BIOETHICS FOR 

EVERY GENERATION

Deliberation and Education in 

Health, Science, and Technology

May 2016

BIOETHICS FOR 

EVERY GENERATION

Deliberation and Education in 

Health, Science, and Technology

Washington, D.C.

May 2016

http://www.bioethics.gov
ii

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

ABOUT THE PRESIDENTIAL COMMISSION FOR 

THE STUDY OF BIOETHICAL ISSUES

The Presidential Commission for the Study of Bioethical Issues (Bioethics 

Commission) is an advisory panel of the nation’s leaders in medicine, science, 

ethics, religion, law, and engineering. The Bioethics Commission advises the 

President on bioethical issues arising from advances in biomedicine and related 

areas of science and technology. The Bioethics Commission seeks to identify 

and promote policies and practices that ensure scientific research, health care 

delivery, and technological innovation are conducted in a socially and ethically 

responsible manner. 

For more information about the Bioethics Commission, please see http://www.

bioethics.gov.

The use of trade names and commercial sources in this report is for identification 

only and does not imply endorsement.
iii

CONTENTS

Letter of Transmittal to the President .................................................................................. iv

Members of the Bioethics Commission ............................................................................... vi

Bioethics Commission Staff and Consultants ................................................................... vii

Acknowledgements .................................................................................................................. viii

EXECUTIVE SUMMARY ..................................................................................................... 1

CHAPTER 1: Introduction.................................................................................................... 13

About This Report .............................................................................................................. 18

CHAPTER 2: Democratic Deliberation in Bioethics ...................................................... 21

At What Level Is Democratic Deliberation Useful? .................................................. 29

How Does Democratic Deliberation Work? ................................................................ 32

Begin with an Open Question and Consider Distinct Points of View ................... 33

Time the Deliberation for Maximum Impact ............................................................ 37

Invite Input from Experts and the Public ................................................................... 38

Foster Open Discussion and Debate ............................................................................40

Develop Detailed, Actionable Recommendations ...................................................... 41

Benefits of Democratic Deliberation..............................................................................42

Recommendations ..............................................................................................................44

CHAPTER 3: Bioethics Education ...................................................................................... 51

Education of Bioethicists .................................................................................................. 55

Bioethics Education ........................................................................................................... 55

Ethics Education ................................................................................................................. 56

Ethics Education Across the Lifespan ........................................................................... 57

Outside the Classroom.................................................................................................... 58

Primary School ................................................................................................................60

Secondary School ............................................................................................................. 61

Postsecondary School .......................................................................................................64

Professional and Graduate School ................................................................................66

Adult Bioethics Education in Public and Private Life ............................................. 68

Obstacles and Potential Solutions ................................................................................... 71

Mutual Reinforcement of Deliberation and Ethics Education ............................... 76

Recommendations ..............................................................................................................77

CONCLUSION ........................................................................................................................ 89

ENDNOTES ............................................................................................................................. 93

APPENDICES ........................................................................................................................ 105

Appendix I: Steps for Deliberation ............................................................................... 106

Appendix II: List of the Bioethics Commission’s Educational Materials by Format .. 108

Appendix III: Guest Presenters to the Bioethics Commission Regarding Deliberation 

and Bioethics Education .....................................................................................................111
iv

Presidential Commission for the Study of Bioethical Issues

President Barack Obama

The White House

1600 Pennsylvania Avenue, NW

Washington, DC 20500

Dear Mr. President:

On behalf of the Presidential Commission for the Study of Bioethical Issues 

(Bioethics Commission), we present to you Bioethics for Every Generation: 

Deliberation and Education in Health, Science, and Technology. In this legacy 

report, the Bioethics Commission focuses on two essential, mutually reinforcing 

missions—both practical and ethical—in our constitutional democracy: 

democratic deliberation and ethics education. These two tools can and should 

be used in tandem to address and resolve complex problems in developing 

health, science, and technology policy for our society. 

A primary mission of the Bioethics Commission has been to reimagine and 

reinvigorate the deliberative and educational roles of bioethics commissions in 

our democracy. Expanding the reach of our many in-person meetings, we have 

used online media tools for public outreach and input, and we have developed 

an unprecedented range of educational materials that help tailor our work 

to a variety of audiences. We undertook this report—which focuses on the 

future of bioethics deliberation and education—because of our nation's urgent 

ongoing need to foster civil and robust public discourse and civic involvement, 

especially in service of health, science, and technology policy that serves the 

common good.

The Bioethics Commission approached each of its past projects with robust 

and reasoned deliberation, inviting presentations from a variety of experts 

and leaders, soliciting and receiving thoughtful input from the public, and 

conducting almost 200 hours of public discussion over seven years. In each 

1425 New York Avenue, NW, Suite C-100, Washington, DC 20005

Phone 202-233-3960 Fax 202-233-3990 www.bioethics.gov
v

of its reports, the Bioethics Commission has recommended improvements in 

ethics and bioethics education. The Bioethics Commission’s body of over 60 

accompanying educational materials is already aiding in the integration of 

bioethics into classrooms and professional settings across our country, from 

high schools to hospitals and beyond. These educational materials reflect the 

Bioethics Commission's commitment to develop useful and accessible tools 

that enable and encourage all citizens to familiarize themselves with the most 

important developments in health, science, and technology. 

To inform this capstone report, the Bioethics Commission held four public 

meetings with deliberation and education as the focus, and heard from speakers 

with diverse backgrounds and perspectives. The Bioethics Commission also 

received many thoughtful public comments.

In Bioethics for Every Generation, the Bioethics Commission offers eight 

recommendations to increase and improve the use of democratic deliberation 

and ethics education in order to enhance complex decision making in bioethics 

and health, science, and technology policy at all levels. Because education and 

deliberation are mutually reinforcing, we offer ideas for innovative ways to 

incorporate deliberation skills into ethics education, and to enhance deliberative 

processes by improving ethics education. 

The Bioethics Commission is honored by the trust you have placed in us and 

appreciative of the opportunity to serve you and our nation in this way.

Sincerely,

Amy Gutmann, Ph.D. 

Chair 

James W. Wagner, Ph.D.

Vice Chair

1425 New York Avenue, NW, Suite C-100, Washington, DC 20005

Phone 202-233-3960 Fax 202-233-3990 www.bioethics.gov
vi

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

PRESIDENTIAL COMMISSION FOR THE STUDY OF BIOETHICAL ISSUES

AMY GUTMANN, Ph.D., CHAIR

President and Christopher H. Browne

Distinguished Professor of Political Science and Professor of Communication, 

University of Pennsylvania

JAMES W. WAGNER, Ph.D., VICE CHAIR

President, Emory University

ANITA L. ALLEN, J.D., Ph.D.

Vice Provost for Faculty, 

Henry R. Silverman Professor of Law 

and Professor of Philosophy, 

University of Pennsylvania

BARBAR A F. ATKINSON, M.D.

Founding Dean, 

University of Nevada, Las Vegas

School of Medicine

NITA A. FAR AHANY, J.D., Ph.D.

Director, Duke Initiative for 

Science & Society; 

Director, Duke M.A. in Bioethics and 

Science Policy, Professor of Law and 

Philosophy, Duke University

CHRISTINE GR ADY, R.N., Ph.D.

Chief, Department of Bioethics, 

National Institutes of Health 

Clinical Center

STEPHEN L. HAUSER, M.D.

Director, UCSF Weill Institute for 

Neurosciences; Robert A. Fishman 

Distinguished Professor and Chair 

of the Department of Neurology, 

University of California, San Francisco

R AJU S. KUCHERLAPATI, Ph.D.

Paul C. Cabot Professor, Department

of Genetics, Harvard Medical School;

Professor, Department of Medicine,

Brigham and Women’s Hospital

NELSON L. MICHAEL, M.D., Ph.D.

Colonel, Medical Corps, U.S. Army;

Director, U.S. Military HIV Research 

Program, Walter Reed Army Institute 

of Research

DANIEL P. SULMASY, M.D., Ph.D., FACP

Kilbride-Clinton Professor of Medicine

and Ethics, Department of Medicine

and Divinity School; Associate Director,

The MacLean Center for Clinical Medical

Ethics, University of Chicago 

Former Members*

YOLANDA ALI

Michael J. Fox Foundation

Founders' Council;

Emory Neurosciences

Community Advisory Board

JOHN D. ARRAS, Ph.D.

Porterfield Professor of Biomedical

Ethics; Professor of Philosophy; 

Professor of Public Health Sciences;

University of Virginia

ALEXANDER G. GARZA, M.D., M.P.H.

Assistant Secretary, Office of Health

Affairs; Chief Medical Officer, 

Department of Homeland Security

*Affiliation at time of Commission membership. 

John D. Arras was a member of the Presidential Commission for the Study of Bioethical Issues from May 2010 

until his death in March 2015. The Bioethics Commission recognizes his contributions to its ongoing reflections on 

education during this time, informed by his over 46 years of experience in teaching.
vii

PRESIDENTIAL COMMISSION FOR THE STUDY OF BIOETHICAL ISSUES 

STAFF AND CONSULTANTS

Executive Director

Lisa M. Lee, Ph.D., M.A., M.S.

Associate Director

Kata Chillag, Ph.D.

Senior Advisors

Paul A. Lombardo, Ph.D., J.D.

Jonathan D. Moreno, Ph.D.

Research Staff, Fellows, and Interns*

James Aluri, M.A.

Misti Ault Anderson, M.S., M.A.

Elizabeth M. Fenton, Ph.D., M.P.H.

Perry Goffner

Steven Kessler, M.S.

Karen M. Meagher, Ph.D.

Michael Moorin

Cristina Nigro, M.S.

Elizabeth R. Pike, J.D., LL.M.

Maneesha Sakhuja, M.H.S.

Nicolle K. Strand, J.D., M. Bioethics

Victoria Wilbur, B.A.

Tenny R. Zhang, B.A.

Administrative Staff

Tynetta Dreher

Esther E. Yoo

Consultants

Bonnie Hamalainen, M.F.A

Burness Communications

C. Kay Smith, M.Ed.

*Includes former research staff, fellows, and interns
viii

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

ACKNOWLEDGEMENTS

This report reflects the culmination of our nearly eight years of work as the 

Presidential Commission for the Study of Bioethical Issues. We are grateful 

to our former members, Lonnie Ali, Alex Garza, and John Arras whose 

contributions to our deliberations reflect a deep and abiding dedication to 

public service and learning.

We are grateful to each of the over 200 speakers who provided us with personal 

and professional testimony that enabled us to consider a breadth of perspectives 

on disparate topics over the years. We appreciate their candor, their clarity, and 

their engagement with the important issues placed before us. In addition, we 

appreciate the hundreds of public comments we received on the various topics 

that we addressed; this public participation in bioethical issues was essential 

for us to arrive at legitimate recommendations. 

We are indebted to our capable and committed staff whose energy, careful 

research, and variety of expertise made indelible contributions to our success. 

Executive Director Lisa M. Lee and senior advisors Paul A. Lombardo and 

Jonathan D. Moreno led and inspired staff to do their best work, which allowed 

us to meet the numerous complex demands we faced. Valerie H. Bonham, who 

served as Executive Director during our first two years, was instrumental in 

getting us off to a productive start. Associate Directors Michelle Groman and 

Kayte Spector-Bagdady, and later Kata Chillag, provided impeccable logistic 

and production support for our reports in addition to subject matter expertise. 

Communications Director Hillary Wicai Viers and Communications Assistant 

Alannah Kittle ensured that our activities and materials reached the right 

audience at their release and laid the path for their enduring use. We thank 

the following staff members and advisors for their contributions across the 

Bioethics Commission’s tenure: 
ix

Anne Pierson Allen

Misti Ault Anderson

Kavita M. Berger

Rachel S. Bressler

David DeGrazia

Brian C. Eiler

Elizabeth M. Fenton

Debbie Forrest

Holly Fernandez Lynch

Eleanor E. Mayer

Debra J.H. Mathews

Karen M. Meagher

David G. Miller

Cristina Nigro

Elizabeth R. Pike

Alan Rubel

Maneesha Sakhuja

Cary Scheiderer

Nicolle K. Strand

Jason L. Schwartz

Jeremy Sugarman 

Bonnie Hamalainen of NIH Division of Medical Arts provided expert design 

advice and service across the body of our work. Tynetta Dreher and Esther 

Yoo served as the administrative glue, consistently going above and beyond to 

ensure Bioethics Commission members and our guest speakers were able to 

gather around the same table to deliberate. To the many Research Associates, 

fellows, interns, and others with whom we have had the pleasure of working, 

we thank you. 

e

For their contributions to Bioethics for Every Generation, we are grateful to the 

23 presenters who spoke before the Bioethics Commission about deliberation 

and ethics education. We also acknowledge that this report is informed and 

enriched by the many other speakers who have commented on deliberation and 

ethics education over the years while presenting to the Bioethics Commission 

on topics addressed in previous reports. We would like to recognize and thank 

our staff for expert assistance in completing this report, as well. A special 

thanks to Bioethics for Every Generation’s project lead Elizabeth Fenton and to 

Nicolle K. Strand for expert drafting of the volume. 

Our deepest appreciation goes to Executive Director Lisa M. Lee and Senior 

Policy and Research Analyst Misti Ault Anderson for envisioning a substantial 

role for us in the bioethics education landscape. Their steadfast commitment 

to and expertise in bioethics education has served us well. 
x

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology
1

EXECUTIVE SUMMARY
2

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

Bioethics permeates multiple facets of our public and private lives. The 

Presidential Commission for the Study of Bioethical Issues (Bioethics 

Commission) has tackled challenges that all of us face as individuals, 

professionals, family members, and members of society in an increasingly 

interconnected world. Such questions include, among others, whether and 

how to employ advancing technology, how researchers and health care 

providers should behave in certain situations, how governments should 

handle public health emergencies, and how individuals should incorporate 

their values when making decisions on behalf of loved ones. Taken together, 

these questions get to the heart of what it means to be a participant in our 

democracy and, in an even broader sense, a responsible member of our world. 

Tackling these questions requires careful and reasoned deliberation, as well 

as a comprehensive understanding of the values that each of us brings to 

the discussion. Deliberation and education are joined in a virtuous circle, 

reinforcing one another to create a more democratic and just society.

Addressing these important questions, which have both practical and ethical 

dimensions, requires a thoughtful deliberative process, because disagreement is 

not something that individuals, professionals, or public officials can or should 

avoid.1

 Arriving at publicly defensible answers to these questions requires 

careful and reasoned deliberation as well as a comprehensive understanding 

of the values that each of us brings to the discussion. The range of relevant 

values—whether part of an individual’s ethics or a professional’s obligations—

can be in conflict, and those value conflicts require reconciliation and 

sometimes public negotiation. For example, in health and science policy, we 

often must address the tension between the importance of individual autonomy 

on one side of the debate and the potential for great societal benefit on the 

other. We must consider how to protect against risk while also advancing 

science and finding cures for diseases or injury-prevention strategies. In 

modeling a process for addressing these questions and steering a way forward, 

the Bioethics Commission has demonstrated that democratic deliberation 

and ethics education complement one another, raising the level of discourse 

about difficult bioethical concerns and improving the way we address ethical 

challenges in health, science, and technology.

The first part of this report provides a justification for the value and use of 

democratic deliberation in bioethics, sets forth a roadmap for conducting 
3

democratic deliberation, and outlines recommendations for advancing and 

improving its use in solving complex bioethics and health policy problems. 

Democratic deliberation about these problems requires an understanding of 

their ethical dimensions. This ethical understanding develops in large part 

through education in ethics. Ethics education provides stakeholders with the 

tools for understanding, reasoning through, and articulating their own values 

when making good decisions about bioethics and health for themselves, their 

loved ones, or their communities and society.

The second part of this report explores possibilities for building on the 

Bioethics Commission’s past work on education by recommending the 

infusion of bioethics training throughout education, building knowledge and 

skills that are tailored for different educational levels and life stages. Even as 

young children are beginning school, they can grasp general ethics concepts 

such as right and wrong. As older students focus their interests and begin 

work or professional training, ethics education can and should become more 

topic-specific. This report outlines recommendations for how ethics education 

can be enhanced at all stages and in different educational contexts with the 

goal of increasing ethical readiness for engagement in civil deliberation about 

bioethical concerns.

Ethics education is crucial for robust democratic deliberation, and deliberation 

broadens participants’ interest in and understanding of different perspectives and 

values that exist in their communities.2

 Deliberation and education complement 

one another, elevating the level of discourse and improving the way our society 

resolves morally complex challenges in health, science, and technology. This 

report concludes by recommending a path to strengthen the association between 

deliberation and education and to ensure that both are reflected in the work of 

future bioethics advisory bodies and in society more broadly.

Democratic Deliberation in Bioethics

Democratic deliberation is a method of decision making in which participants 

discuss and debate a question of common concern, justifying their arguments 

with reasons and treating one another with mutual respect, with the goal of 

reaching an actionable decision for policy or law, open to future challenge 

or revision.3

 The process of democratic deliberation is especially useful for 

Executive Summary
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

the types of ethical questions we face in bioethics, in which solutions have 

complex empirical as well as moral bases and about which reasonable people 

can disagree. Bioethics advisory bodies can play a key role in leading these 

deliberations on the local, state, national, and international levels.

Effective democratic deliberation calls for inclusive and respectful debate 

and depends on collaborative decision making. Stakeholders with a range 

of perspectives are encouraged to present their views, seek common ground 

whenever possible, and maintain mutual respect even when irreconcilable 

differences among viewpoints remain.4

The notion of collaborative decision making and inclusion of a range of 

perspectives is especially important when deliberating about bioethics. Bioethics 

is inherently interdisciplinary and involves questions of broad public concern 

that can be technical and complicated, both scientifically and ethically. Effective 

deliberation about these topics requires careful presentation and analysis of 

information as well as inclusion of all relevant viewpoints and stakeholders, 

from scientists and health care providers who are experts in the technology 

or policy being deliberated, to members of the public who will be affected by 

a decision, to professionals across a diversity of fields who can understand the 

implications of a policy for the law, industry, government, and beyond.

The field of bioethics is often called upon to resolve seemingly intractable 

ethical conflicts and challenges.5

 Distributing scarce health resources, 

determining which patient should receive an organ available for transplant, or 

determining when restricting individuals’ liberty for the community’s safety 

and wellbeing is justifiable are central questions in bioethics that cannot be 

resolved except through a process in which multiple perspectives are shared 

and considered. These debates occur at all governmental levels in addition to 

communities, hospitals, institutional review boards, and professional societies. 

Deliberation is an essential process for finding points of agreement and moving 

forward on these morally complex concerns in all of these contexts.

Recommendation 1: Guide Bioethics Policy Decisions with Democratic 

Deliberation

Stakeholders in the democratic process at all levels—including communities, 

policymakers, popular opinion leaders, and advisory bodies—should use a 
5

well-crafted form of democratic deliberation to inform and guide health, 

science, and technology policy decisions and their ethical dimensions. 

Policymakers, communities, and advisory bodies should use democratic 

deliberation to consider morally complex and controversial bioethical 

problems to promote mutual understanding and respect among participants 

as well as greater legitimacy for resulting policy.

Successful democratic deliberation fosters greater individual and mutual 

understanding of problems of common concern, broader public engagement 

with complex policy questions, and legitimacy of decision making. Both 

immediate and long-term benefits result from diverse stakeholders in our 

democracy participating in forums for decision making that reflect the core 

values of democratic deliberation.6

Recommendation 2: Conduct Deliberative Activities in Ways Conducive 

to Mutual Respect and Reason-Giving Among Participants in Accordance 

with Best Practices

Organizers of deliberative activities should ensure that deliberation is 

accomplished in accordance with best practices established in the broad body 

of scholarly literature. At a minimum, effective deliberative processes require 

participants to give reasons for their arguments and to show respect for fellow 

participants. In addition, the set of concerns for deliberation should raise 

questions for which practical decisions need to be made, and the deliberations 

should be intended and designed to influence how those decisions are made.

Individuals and entities that organize deliberative processes, or would 

like to incorporate democratic deliberation into their decision-making 

processes, should review and incorporate existing literature on methods and 

best practices. Steps in the process are described below and are included in 

Appendix I (Steps for Deliberation). Other considerations include how long 

to deliberate, how many individuals to include, whether to seek a random 

sample or ensure inclusion from members of certain groups, what preparatory 

materials to make available, and how to incorporate expert consultation and 

supply useful information for those engaged in deliberation. Regardless of 

variations in the deliberative process, at a minimum, it should require that 

participants give reasons for their views and show respect for one another. 

Executive Summary
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

As a concrete demonstration of respect, decisions should aim, if possible, to 

enable minority practices to continue to flourish, provided these practices do 

not threaten the common good or unduly burden the majority’s ability to 

implement the agreed-upon policy. Additional best practices will depend on 

the particular goals and context of the deliberative activity. 

Recommendation 3: To Further the Practical Contribution of 

Deliberation in Bioethics, Conduct Additional Research on the 

Effectiveness of Deliberative Methods

Scholars of democratic deliberation, along with individuals and organizations 

using democratic deliberation for decision making, should continue to 

assess the effectiveness of particular deliberative methods as tools to address 

complex bioethical challenges. These studies should evaluate the processes 

and outcomes of different kinds of deliberation and establish measurements 

of success.

During the past decade, scholars have begun to develop and refine measures 

for evaluating the effectiveness of deliberative activities.7

 In evaluating these 

activities, they have been attentive to both processes and outcomes, but more 

work remains. Specifically, formative and process evaluations should include 

questions about how to conduct democratic deliberation to maximize mutual 

respect, optimize engagement, and elicit less commonly held perspectives 

to create an inclusive discussion of policy proposals. Public health policies 

are a particularly important area for public deliberation because they require 

cooperation among substantial portions of the population. A deliberative 

approach that engages affected communities and uses deliberative processes to 

reach policy solutions that are both ethically and scientifically sound leads to 

public health policies with greater legitimacy for those most affected by them.

Bioethics Education

Regardless of whether we are aware of it, bioethics affects us all. As individuals, 

we have no alternative but to navigate an increasingly complex health care 

system for ourselves and our loved ones. As voters, taxpayers, and community 

members, we must decide what communal values should guide policy on 

fundamental questions of birth and death, health, and wellbeing—or these 
7

will be decided for us. As scientists, clinicians, and lawyers, to fulfill our 

professional obligations, we must resolve dilemmas, understand the obligations 

of our professions, and attend to the broader social impacts of our work. In 

each of these roles, the ability to recognize, articulate, and resolve ethical 

challenges is absolutely essential.

National bioethics bodies like ours can accept an increasingly important 

role by encouraging and supporting bioethics education. This Bioethics 

Commission has strived to fulfill this role in several ways. We have developed 

educational materials related to our reports to reach diverse audiences. We 

participate in deliberation and learn details of particular topics to gain a deeper 

understanding of how ethics principles we have learned throughout our lives, 

both personally and professionally, should be applied to the open questions 

we face as a federal commission. In modeling this educational component of 

deliberative democracy, we aim to encourage future generations of bioethicists, 

scientists, health care providers, other professionals, and the public at large to 

become informed and make reasoned decisions in this pluralistic society. As 

the Bioethics Commission nears the end of its tenure, we encourage future 

bioethics advisory bodies to continue to fulfill this role, as bodies before us 

have done.

Ethics education should start early, building a foundation for ongoing learning 

throughout education. Early ethics education provides a base on which to build 

skills to engage with the ethical dimensions of subjects taught in postsecondary 

school, as well as ethical matters in specific professions. In addition, ethics 

education at different stages of life helps individuals grapple with ethical 

choices as individuals, family and community members, and professionals.

Ethics education can and should be incorporated throughout education, from 

curricula in primary school through secondary school, to undergraduate 

coursework, graduate school, and professional training programs. Ethics 

education is best when it builds on itself over time. To build ethics literacy, 

broad-based ethics education must start early, before students begin to track 

into more specialized interests and careers. Over time, ethics education should 

become more targeted, and provide preparation for the particular challenges 

that health, science, and technology professionals are likely to face.

Executive Summary
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

Recommendation 4: Implement Foundational Broad-Based Ethics 

Education at all Levels

Educators at all levels, from preschool to postsecondary and professional 

schools, should integrate ethics education across the curriculum to prepare 

students for engaging with morally complex questions in a diverse range of 

subjects. Ethics education should include attention to both the development of 

moral character and virtue as well as the cultivation of ethical reasoning and 

decision-making skills that can be deployed in a bioethics context. Methods 

of ethics education should be evidence-based and grounded in best practices.

Development of ethical reasoning skills begins early in childhood. Questions 

and case studies with a bioethical component can be an important element of 

this early education. For example, elementary school students might be asked to 

think about what questions they would have if they were invited to participate in 

research. Older elementary school students might be asked to compare theories 

arrived at by science versus those arrived at by other methods or to reason 

through the concept of neurobiologic determinism by answering such discussion 

questions as, “Are our futures and fates fixed? Does what we do today have any 

effect on what happens in the future?”8

 Ethics education builds critical thinking 

and argumentation skills, develops character, and emphasizes the importance of 

virtue. Those who develop curricula should draw from the empirical evidence 

about moral development to scaffold questions and topics that are tailored for 

students’ level of thinking at different ages.9

Recommendation 5: Develop Bioethics Education and Training for 

Professionals

Educators at the graduate and professional levels, including in the health care, 

public health, engineering, and legal fields, should develop, integrate, and 

emphasize bioethics education to foster continued character development, 

cultivate a culture of responsibility, and teach the specific skills and bioethical 

reasoning applicable to the profession.

Professional ethics seeks to identify and guide professionals’ actions on the 

basis of the moral foundations of their chosen careers, and these actions 

often need to be explicitly taught. Graduate programs in such professions 

as nursing and public health ought to help students develop the confidence, 
9

reasoning skills, and moral resources they will need to address the distinct 

ethical considerations of their professional work. Importantly, some graduate 

programs including laboratory science and public health have independently 

documented a need to develop critical reasoning skills and moral sensitivity.10

Recommendation 6: Support Opportunities for Teacher Training in 

Bioethics Education

Education policymakers, teacher training programs, and other funders 

should support development of teacher training in ethics education to prepare 

teachers of all subjects to facilitate constructive bioethical conversations in 

their classrooms. Teacher training programs should anticipate existing 

educational inequities and provide teachers and students with equitable access 

to ethics education, with an aim of preparing all students for the bioethical 

questions that might arise during the course of their lives.

Educators need support and professional development that prepares them to 

overcome obstacles to implementing bioethics education and that rewards them 

for doing so. Training in ethics and techniques for conducting deliberative 

discussions in the classroom can help teachers overcome their own and others’ 

hesitancy to engage in bioethics education. Training also can prepare teachers 

for addressing administrators’ and parents’ concerns that ethics education seeks 

to indoctrinate students.

Mutual Reinforcement of Deliberation and Ethics Education

Ethics education, through its focus on engagement with values and analytical 

reasoning, prepares members of communities to engage with and deliberate 

about morally complex bioethical questions arising in science and technology. 

In turn, deliberative practices are educational, leading to a more informed 

and participatory public. These mutually reinforcing functions create a 

virtuous circle, reflecting the ways in which ethics education and democratic 

deliberation are linked. Learning to recognize, articulate, and resolve the 

different ethical challenges we encounter as individuals will foster the skills 

necessary for deliberating with others about contentious civic concerns we face 

in our increasingly pluralistic society. In other words, education is crucially 

important for democratic citizenship.11 Deliberation can be used as a tool to 

Executive Summary
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

develop more informed and educated students, professionals, communities, 

and leaders who can constructively contribute to conversations about morally 

complex topics—including bioethical ones. The mutual reinforcement of 

deliberation and ethics education promotes values essential to an engaged and 

civic-minded population.

Recommendation 7: Foster Mutual Reinforcement of Deliberation and 

Ethics Education

Educators and organizers of deliberative activities should use the tools of 

deliberation and education to facilitate civic engagement about pressing bioethical 

concerns surrounding developments in health, science, and technology.

This Bioethics Commission has demonstrated its commitment to furthering 

ethics education at all levels, by making recommendations calling for both 

broad public ethics education and specific professional ethics training, 

as well as developing bioethics educational materials that can be used in a 

broad range of settings by educators who want to incorporate bioethics into 

their classrooms. The Bioethics Commission has developed more than 60 

educational tools at the time of this printing and is continuing to develop 

more, including case studies, deliberation exercises, modules on key bioethics 

topics, classroom discussion guides, videos, and webinars, all of which are 

available for free download on the Commission’s website. The materials can 

be used by teachers in high school, college, and graduate school classes; by 

professionals in the health sciences and technology fields, including clinicians, 

public health practitioners, and researchers; and by members of the public.

Recommendation 8: Encourage Future Bioethics Commissions to 

Further Their Deliberative and Educational Roles

Future bioethics commissions should continue to explore, reimagine, and 

reinvigorate the educational and democratic roles fulfilled and exemplified by 

such commissions. They also should encourage discourse and civic involvement 

in developing health, science, and technology policy. The work of bioethics 

commissions should be used as the foundation for creating educational tools 

tailored for different levels, from primary school through postgraduate and 

professional training, that enable teachers to introduce deliberation about 

contemporary and meaningful bioethics topics in their classrooms.
11

Supporting public bioethics education and engaging in deliberation are 

important functions of bioethics advisory bodies. Bioethics commissions 

ought to serve as public forums by engaging, educating, and listening and 

responding to citizens.12 This Bioethics Commission has actively engaged in 

and helped to implement deliberative practices and bioethics education. It has 

made direct contributions to bioethics education by developing teaching tools 

that are wide-ranging in scope and format and intended to be accessible to 

both educators and members of the public. These materials draw on research 

about effective education to ensure that all kinds of learners are able to access 

the work of the Bioethics Commission, and through that work, engage in some 

of the most challenging contemporary bioethics topics.

* * *

Since its inception, this Bioethics Commission has been committed to the 

values embedded in democratic deliberation. We hope that this report informs, 

inspires, and guides future bioethics commissions. We have described our 

deliberative processes, outlining the key steps in the process of democratic 

deliberation, and recommended ways of incorporating and extending a 

deliberation approach to making recommendations and formulating advice 

on complex ethical challenges in health, science, and technology. As the 

tenure of this Bioethics Commission draws to a close, we hope that future 

commissions and advisory bodies at all levels will continue to invoke the values 

of democratic deliberation as they work to find ways forward on the most 

pressing bioethical questions that confront our society.

Executive Summary
12

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology
13

CHAPTER 1

Introduction
14

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

Democracy has to be born anew every generation, 

and education is its midwife.13

—John Dewey, American educator and philosopher, 1859–1952

I

n the late 1980s, the state of Oregon attempted to pass a new budget that, 

in part, would reduce the cost of health care. The proposed budget cut 

coverage for common but expensive medical procedures from the state’s 

publicly funded health care plan, drawing widespread public outcry.14 Oregon 

state officials quickly discovered that such major decisions about government 

health care benefits should not be imposed on the public unilaterally. These 

decisions, which affect everyone, arouse deeply held values about what 

government owes its citizens and what citizens owe one another. They are best 

vetted through a consultative public process. The legitimacy of government 

action, more often than not, depends on inclusion of the governed in the 

decision-making process.

The Oregon case is particularly instructive. A deliberative process involving 

the public was needed—and eventually implemented—to create a prioritized 

list of health benefits that citizens viewed as legitimate. Legislative decisions 

about rationing health care, as with many policy decisions related to health 

and wellbeing, are value-laden and have profound consequences for all. As 

this report will demonstrate, democratic deliberation dramatically increases the 

likelihood that health policies will be accepted as legitimate and justifiable. It 

expresses due respect for those who will be governed by such policies.

The Presidential Commission for the Study of Bioethical Issues (Bioethics 

Commission) focuses on bioethics, which raises a diverse set of complex and 

weighty questions that will challenge nearly all of us at some point in our 

lives, as individuals and as members of our communities. A sample of the 

challenges this Commission has tackled include the following: How should 

we safeguard children from potential bioterrorism while ensuring their safety 

as we test medical countermeasures? What should doctors, researchers, and 

online health care companies do when they find something they did not expect 

(e.g., information indicating that an individual might develop an incurable 

disease)? How should the United States and other countries participate in 
15

Introduction I

global efforts to curtail outbreaks of highly infectious diseases such as the 

Ebola virus without compromising the liberty of their residents, mistreating 

aid workers, or contributing to the stigmatization of affected groups? How can 

we move forward with promising large-scale genomic research while protecting 

individual privacy? What are the implications of using new and innovative 

neuroscience research and technology to make us smarter or as evidence in a 

court of law?

Considering bioethical questions is at the heart of what it means to be an 

active participant in our democracy—whether as a clinician caring for patients, 

a family member making decisions for an ill relative, a company making 

personalized medical data available to consumers, a policymaker deciding how 

to regulate research, or a scientist advancing important discoveries. Addressing 

these important considerations, which have both practical and ethical 

dimensions, requires a thoughtful deliberative process, because disagreement 

is not something that individuals, professionals, or public officials can or 

should avoid.15 Arriving at publicly defensible answers to each of these 

questions requires careful and reasoned deliberation as well as a comprehensive 

understanding of the values that each of us brings to the discussion. 

The range of relevant values—whether part of an individual’s ethics or a 

professional’s obligations—can be in conflict, and those value conflicts require 

reconciliation and sometimes public negotiation. For example, in health and 

science policy, we often must address the tensions between the importance 

of individual autonomy on one side of the debate and the potential for great 

societal benefit on the other. In another example, we must consider how to 

protect against risk while also advancing science and finding cures for diseases or 

injury-prevention strategies. In modeling a process for addressing these questions 

and steering a way forward, the Bioethics Commission has demonstrated that 

democratic deliberation and ethics education complement one another, raising 

the level of discourse about difficult bioethical concerns and improving the way 

we address ethical challenges in health, science, and technology.

Respect, compromise, and constructive public engagement are values embedded 

in the theory and practice of democratic deliberation. Democratic deliberation 

is an essential tool for building constructive policy and practices, especially in a 

climate of polarization and distrust regarding government and public officials. 
16

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

Democratic deliberation is a decision-making process in which participants give 

reasons for their views and decisions and respond to the reasons given by others 

in return. Reason-giving ensures that decisions made are justifiable and reflects 

the value of mutual respect for those who might be bound by such decisions, 

treating them as individuals who participate in their own governance.

The first part of this report provides a justification for the value and use of 

democratic deliberation in bioethics, sets forth a roadmap for conducting 

democratic deliberation, and outlines recommendations for advancing and 

improving its use in solving complex bioethics and health policy problems. 

Democratic deliberation about these problems requires an understanding of 

their ethical dimensions. This ethical understanding develops in large part 

through education in ethics. Ethics education provides stakeholders with the 

tools for understanding, reasoning through, and articulating their own values 

when making good decisions about bioethics and health for themselves, their 

loved ones, or their communities and society.

The Bioethics Commission also has prioritized bioethics education—both 

through its own public deliberation and in its published work. In its 

reports, the Bioethics Commission has confronted almost a dozen distinct 

bioethics topics—each one involves technical and scientific information 

and a set of values that are understood and weighed differently in each 

case. Throughout the course of its tenure, Commission members have 

addressed these topics methodically, always beginning by developing a 

thorough understanding of the scientific and ethical principles at stake. In 

this way, the Bioethics Commission has attempted to model effective ethics 

education as a fundamental element of deliberating and reaching agreeable 

recommendations and solutions at the federal policy level. In addition, the 

Bioethics Commission has produced more than 60 diverse educational 

materials, designed for audiences of different levels and disciplines from high 

school students to clinicians, lawyers, and other professionals. In each of its 

reports, the Commission has emphasized the importance of education for all 

members of society with a stake in the topic, because education helps raise the 

level of public discourse and contributes to more robust and legitimate policy 

decisions about these complex bioethics questions.

The second part of this report explores possibilities for building on the 

Bioethics Commission’s past work on education by recommending the infusion 
17

Introduction I

of bioethics training throughout education, building knowledge and skills 

at different educational levels and life stages. Even as young children begin 

school, they can grasp such general ethics concepts as right and wrong. As older 

students focus their interests and begin work or professional training, ethics 

education can and should become more topic-specific. This report outlines 

recommendations for how ethics education can be enhanced at all stages and in 

different educational contexts with the goal of increasing ethical readiness for 

engagement in civil deliberation about bioethical concerns.

Ethics education is important for individuals making decisions that involve 

bioethics on a personal level—decisions about how aggressively to treat a 

terminal illness, whether to participate in medical research, or whether to 

use an emerging scientific technology—and can help individuals recognize 

ethical challenges while reflecting on the values implicit in them. Individuals 

also confront bioethics in decisions about policies and laws that will affect 

them and their neighbors—questions about who should be covered by publicly 

funded health care, whether physician-assisted dying should be available 

for individuals with terminal illness, or whether and how the public health 

department ought to nudge the public toward habits that might improve health 

and wellness or prevent obesity. Ethics education can help prepare individuals 

to deliberate and decide together what these policies should be and what values 

they should reflect.

Deliberation and education are joined 

in a virtuous circle, reinforcing one another to create 

a more democratic and just society.

Ethics education is crucial for robust democratic deliberation, and deliberation 

broadens participants’ interest in and understanding of different perspectives 

and values that exist in their communities.16 Deliberation and education are 

joined in a virtuous circle, reinforcing one another to create a more democratic 

and just society. This report concludes by recommending a path to strengthen 

the association between deliberation and education and to ensure that both 

are reflected in the work of future bioethics advisory bodies and in society 

more broadly.
18

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

About This Report

Throughout its tenure, the Bioethics Commission has completed 10 projects, 

including this one, on topics as diverse as privacy and whole genome 

sequencing, ethics and Ebola virus disease, and neuroscience and society 

(Figure 1). Presented with topics that involve deeply held values, public 

concern, and longstanding bioethical questions, the Bioethics Commission 

has approached each project with reasoned deliberation. They have invited 

testimony from experts in various disciplines and from across the country and 

the world, solicited input from the public, and conducted approximately 200 

hours of public discussion over 7 years. Deliberation has been a key feature of 

this Bioethics Commission’s work.

NEW DIRECTIONS The Ethics of Synthetic Biology 

and Emerging Technologies

December 2010

Presidential Commission 

for the Study of Bioethical Issues

0039

0076 0077 0078 0079 0081

878 879 880 881 882 883 884 885

918 919 920 921 922 923 924 925

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03810382038303840385

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0741 CCTTC

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787 788 789 790 791 792 793 794

962 963 964 965 966 967 968 969

0041 0040 0042 0043

0044

0112 0113 0114 0115

0116

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0145 0146 0147

01480149

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008000820083 0046

September 2011

“Ethically impoSSiblE”

STD Research in Guatemala 

from 1946 to 1948

Presidential Commission for the Study of Bioethical Issues

1425 New York Avenue NW, Suite C-100

Washington, D.C. 20005

(202) 233-3960

www.bioethics.gov

9/14/11 2:37 PM

December 2011

MORAL SCIENCE

Protecting Participants in 

Human Subjects Research

Presidential Commission for the Study of Bioethical Issues

1425 New York Avenue NW, Suite C-100

Washington, D.C. 20005

(202) 233-3960

www.bioethics.gov

MORAL SCIENCE Protecting Participants in Human Subjects Research Presidential Commission for the Study of Bioethical Issues December 2011

October 2012

PRIVACY and PROGRESS

inWhole Genome Sequencing

March 2013

SAFEGUARDING 

CHILDREN

Pediatric Medical 

Countermeasure Research

ANTICIPATE and

COMMUNICATE

Ethical Management of 

Incidental and Secondary Findings 

in the Clinical, Research, and 

Direct-to-Consumer Contexts

December 2013

GRAY MATTERS

Integrative Approaches for 

Neuroscience, Ethics, and Society

VOLUME 1

May 2014

ETHICS and EBOLA

Public Health Planning 

and Response

February 2015 March 2015

GRAY MATTERS

 Topics at the Intersection of 

 Neuroscience, Ethics, and Society

VOLUME 2

FIGURE 1: THE BIOETHICS COMMISSION’S REPORTS, 2010–2015

Since its inception in 2010, the Bioethics Commission has published nine reports, not including this one. 

Topics include synthetic biology, protection of human research participants, public health planning and 

response, and neuroscience, among others.
19

Introduction I

In each of its reports, the Bioethics Commission’s substantive recommendations 

have included improvements in ethics and bioethics education to advance 

ethical decisions and policymaking. After each report’s release, the Bioethics 

Commission published educational materials to amplify its analysis and 

recommendations, making its work more accessible to diverse stakeholders (see 

Appendix II for a list of these materials).

The Bioethics Commission chose deliberation and education as the topic 

of its capstone report to underscore the importance it places on these two 

tools. To develop the recommendations contained in this report, the Bioethics 

Commission conducted four public meetings, heard from more than 20 

experts, received numerous thoughtful public comments, and drew from its 

own experience on the topic of deliberation and education in bioethics. The 

report offers eight recommendations to advance the use of both tools as they 

intersect with bioethics.
20

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology
21

CHAPTER 2

Democratic Deliberation in Bioethics
22

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

[D]eliberating with other human beings is the morally only 

and best way we have in order to find good solutions to the 

challenges for our societies and our global community.17

—Christianne Woopen, Chair, German Ethics Council, 2012–present

Democratic deliberation is a method of decision making in which 

participants discuss and debate a question of common concern, 

justifying their arguments with reasons and treating one another with 

mutual respect, with the goal of reaching an actionable decision for policy 

or law, open to future challenge or revision.18 The process of democratic 

deliberation is especially useful for the types of ethical questions we face in 

bioethics, in which solutions have complex empirical as well as moral bases 

and about which reasonable people disagree. Bioethics advisory bodies can 

play a key role in leading these deliberations on the local, state, national, and 

international levels.

Although democratic deliberation can—and should—occur at all levels of 

decision making across a wide range of matters of common concern, we focus 

in this report on democratic deliberation in the areas of health, science, and 

technology policy for two reasons. First, these areas are the focus of bioethics 

and represent the topics on which the Bioethics Commission is best able 

to make a contribution in leading and supporting democratic deliberation. 

Second, topics in these areas are particularly well-suited to the process of 

democratic deliberation. They often are unsettled, become contentious, have 

public impact, and need public guidance to chart a path forward.

Effective democratic deliberation calls for inclusive and respectful debate 

and depends on collaborative decision making. Stakeholders with a range 

of perspectives are encouraged to present their views, seek common ground 

whenever possible, and maintain mutual respect even when irreconcilable 

differences among viewpoints remain.19 Deliberation is distinct from the 

broader notion of discussion. A major goal of discussion is to develop an 

understanding of a topic. Deliberation includes understanding and adds 

the goal of arriving at a shared policy or course of action in response to a 

particular question of the form, “What should we do about this?”20 The notion 
23

Democratic Deliberation in Bioethics II

of collaborative decision making and inclusion of a range of perspectives is 

especially important when deliberating about bioethics. Bioethics is inherently 

interdisciplinary and involves questions of broad public concern that can 

be technical and complicated, both scientifically and ethically. Effective 

deliberation about these topics requires careful presentation and analysis of 

information as well as inclusion of all relevant viewpoints and stakeholders, 

from scientists and health care providers who are experts in the technology or 

policy being deliberated, to members of the public who will be affected by a 

decision, to professionals across a diversity of fields who can understand the 

implications of a policy for the law, industry, government, and beyond.

Democratic deliberation has played a vital role 

for bioethics bodies both inside and outside the 

United States as they formulate public policy 

on morally complex bioethical questions. For 

example, a national-level deliberation in the 

United Kingdom considered the implications of 

a new scientific technology that could prevent 

certain devastating diseases caused by failing 

mitochondria, the engine of cells, that can be 

passed on to children by the mitochondria in 

the mother’s egg cell.21 An estimated 1 in 5,000 

individuals suffer from mitochondrial disease, 

which can cause damage to the brain, heart, 

liver, and kidneys.22 The method honed in 2010 

involves transferring the nucleus of the mother’s 

egg cell into a donor egg that has healthy 

mitochondria. In 2012, the United Kingdom’s 

Human Fertilisation and Embryology Authority (HFEA)—an independent 

regulatory agency for research and treatment involving embryos, sperm, and 

eggs—was asked by the government to assess public views on mitochondrial 

donation.23 Through this project, HFEA hoped to “stimulate a rich and varied 

public debate, to help [it] make an informed decision” about regulations for 

this promising new intervention.24 HFEA partnered with Sciencewise, a U.K. 

publicly funded national center for public dialogue in science and technology 

policy, to design a 13-month public dialogue process by using deliberative 

“[B]ioethics is simply too 

important to be left to the 

bioethicists, but should offer 

opportunities for the general 

public to engage on a broad 

array of pertinent issues and 

to articulate their beliefs, 

secular or religious, and their 

concerns, be they related 

to technology or social 

injustices.”

Levin, D., Associate Professor, 

Department of Political Science, 

University of Utah. (2014). 

Deliberation and Bioethics 

Education: Overview. Presentation 

to the Bioethics Commission, 

November 6. Retrieved March 22, 

2016 from http://bioethics.gov/

node/4321. 
24

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

workshops, open consultation meetings, a representative survey, patient focus 

groups, and an open consultation questionnaire.25

At the conclusion of this process, HFEA reported that public deliberations 

had demonstrated that “general support [existed and]...that ethical concerns 

are outweighed by the arguments in favour of mitochondria replacement.”26

Drawing on HFEA’s work, results of the public dialogue process, and input 

from the Nuffield Council on Bioethics, legislators developed the necessary 

infrastructure to regulate mitochondrial donation. Regulations were approved 

by U.K.’s Parliament in 2015.27

The process of democratic deliberation can serve both instrumental and 

expressive purposes: through deliberation, decision makers can ensure that 

decisions are based on relevant facts that have been subjected to reasoned 

judgment, serving the instrumental purpose of reaching better policy outcomes. 

A mutually respectful process also serves the expressive purpose of including 

and respecting affected stakeholders in the decision-making process, ensuring 

that decisions and policies are justifiable to those who will be affected by them.28

Democratic deliberation is not foolproof—limitations and challenges exist 

with every method of decision making. For example, reaching consensus 

can be difficult and the process misused to mask differences rather than 

understanding them. However, in general and compared with the status quo 

in our U.S. political system, deliberation has many advantages. It provides a 

morally and practically defensible way for addressing hyperpartisan gridlock. 

It also promotes mutual respect rather than fueling the sharp polarization and 

heightened differences that make consensus and legitimate outcomes nearly 

impossible in our current context.

A central tenet of democratic deliberation is reason-giving. Participants in 

deliberation are expected to offer reasons for their arguments and views and 

to incorporate the facts offered by opposing views into their reasoning.29

This reciprocal reasoning has four fundamental features: accessibility, moral 

quality, respect, and revisability.30 A deliberative exercise used in health 

care policymaking illustrates these four features. “Choosing Healthplans 

All Together” (CHAT), developed by Susan Goold, Marion Danis, and 

colleagues, uses a deliberative approach to engage participants in making 

complex decisions about which benefits to include in a health insurance 
25

Democratic Deliberation in Bioethics II

package (Figure 2). During the exercise, participants move from making 

decisions individually, as if choosing coverage for themselves or their 

families, to choosing on behalf of a small community, to deciding on behalf 

of all members of a defined population (e.g., a state).31 The results of CHAT 

exercises have guided decisions about health care prioritization, including 

capturing the health care coverage preferences of such underrepresented 

groups as low-income, uninsured individuals and older Medicare enrollees; 

streamlining employer-offered insurance; and developing innovative, 

collaborative insurance pools.32

CHAT

Choosing Health Plans All Together

Choosing Health Plans All Together

Mental

Health

Substance

Abuse

Last

Chance

Infertility

Home

Health

Vision

Hospitalizatio

n

Uninsured

Tests

Dental

Long Term Facility

Pharmacy Other

Primary

Sp

e

cialty

HIGH MEDIUM BASIC

HIGH MEDIUM BASIC

BASIC MEDIUM HIGH

FIGURE 2: CHAT WHEEL

“Choosing Healthplans All Together” (CHAT) is a structured small-group deliberative exercise in which 

participants use the board pictured here to make decisions about health coverage for themselves and 

for the public. Source: Danis, M., Head, Section on Ethics and Health Policy, Department of Bioethics, 

National Institutes of Health (NIH) Clinical Center. (2015). Facilitating Public Dialogue about Bioethics. 

Presentation to the Bioethics Commission, September 2. Retrieved March 23, 2016, from http://

bioethics.gov/node/5265.
26

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

The first feature of reciprocal reasoning is that the reasons given are accessible to 

everyone, which rules out, for example, reasons that appeal only to members of 

the population who hold certain beliefs (e.g., those with a particular religious 

belief) or scientific findings expressed in terms that are not intelligible to 

attentive laypersons. By asking individuals to make health coverage decisions 

on behalf of entire communities or populations, the CHAT exercise forces 

participants to incorporate others’ perspectives. At the beginning of the 

exercise, when they are choosing health plans only for themselves, they can 

make decisions solely on the basis of their own values, but after they have to 

take other perspectives into account, the relevant reasons they give must be 

accessible to a broader audience.

The second feature of reciprocal reasoning is that the justifications given 

are moral reasons, in that they apply to everyone who is situated similarly 

in all morally relevant respects. For example, during the CHAT exercise, 

if participants believe that they are morally entitled to coverage of certain 

medical services, they should then extrapolate that moral reasoning to the 

rest of the community and the population, building that entitlement into the 

benefits package they design for everyone.

Third, the reason-giving process needs to be mutually respectful, an element 

that requires more than mere tolerance or indifference to others’ viewpoints. 

Mutual respect entails engaging constructively with those who hold differing 

positions. Again, in CHAT deliberations, because participants must take 

on others’ perspectives by choosing health plans for entire communities, 

individuals gain respect for their fellow participants because the results will 

affect all of them. One element of respect involves avoiding winner-take-all 

solutions that preference the majority opinion over others. Minority views 

should be considered, and solutions should be found that both impinge as little 

as possible on the dominant point of view and that satisfy as much as possible 

the minority goals. Respecting minority viewpoints instead of discounting 

them demonstrates respect for all participants in a deliberative process.

Finally, the conclusions reached need be revisable over time: a mechanism 

must be in place to revisit decisions in light of new information or conditions. 

The science or technology in question might advance, the context might 

change, or our understanding of the values at stake might shift with time. 
27

Democratic Deliberation in Bioethics II

Revisability allows decision makers to 

respond to these changes and ensures that 

all aspects of a decision, including norms, 

values, and theoretical commitments, are 

open to future challenge and subsequent 

revision or rejection if they no longer 

withstand scrutiny.33 Policymakers who 

have used CHAT have noted that they 

must continue to revisit the deliberations 

and perhaps conduct new exercises 

to determine if the social climate has 

changed, especially when new information 

comes to light (e.g., new approved medical 

procedures or a shift in cultural norms).

These four features of reciprocal reasoning are essential in deliberations about 

bioethics. Bioethical concerns, which often involve matters of life and death, 

can evoke strong personal responses, and those participating in deliberations 

might have strong feelings about and be deeply invested in their views. These 

concerns are often also profoundly communal and collective, implicating 

moral questions, about what we owe each other in a just society, or what it 

means to be human. In the face of such questions, which are at once deeply 

personal and social, reciprocal reasoning requires that participants enter the 

deliberative process willing to respect those with different views and willing 

to give accessible reasons for their arguments rather than relying on personal 

beliefs or individual circumstances. Revisability is also important in bioethics 

deliberation, because bioethics often 

involves emerging technologies that, along 

with our understanding of them, are likely 

to evolve rapidly.

The field of bioethics is often called upon 

to resolve seemingly intractable ethical 

conflicts and challenges.34 Distributing 

scarce health resources, determining which 

patient should receive an organ available for 

transplant, or determining when restricting 

“Everywhere around the world...we 

found [that] people are smart if you 

create the conditions for collective 

deliberation.... The public is not 

stupid. It’s just, normally, they’re not 

paying attention. So if you can give 

them a reason [to] think their voice 

matters, they do very well.”

Fishkin, J.S., Janet M. Peck Professor of 

International Communication, Director, 

Center for Deliberative Democracy, Stanford 

University. (2015). Connecting Democratic 

Deliberation Theory to Practice. Presentation 

to the Bioethics Commission, May 27. 

Retrieved March 23, 2016 from http://

bioethics.gov/node/4944.

“[D]eliberation does something. 

People change their minds after 

they deliberate.”

De Vries, R., Professor of Learning Health 

Sciences; Co-Director, Center for Bioethics 

and Social Sciences in Medicine; Professor 

of Sociology; Professor of Obstetrics 

and Gynecology, University of Michigan. 

(2015). Fostering and Measuring Success 

in Ethics and Deliberation. Presentation 

to the Bioethics Commission, September 

2. Retrieved March 23, 2016 from http://

bioethics.gov/node/5268.
28

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

individuals’ liberty for the community’s safety and wellbeing is justifiable are 

central questions in bioethics that cannot be resolved except through a process 

in which multiple perspectives are shared and considered. These debates occur 

at all governmental levels in addition to communities, hospitals, institutional 

review boards, and professional societies. Deliberation is an essential process 

for finding points of agreement and moving forward on these morally complex 

concerns in all of these contexts.

In a deliberative democracy, the quality of deliberation legitimates the resulting 

consensus.35 In contrast with outcomes determined by the victor of a battle of 

wills and power, the outcomes of deliberation derive from and are legitimized 

by exercise of reason toward the common good.36 Deliberation can also 

legitimate policy decisions for the public by incorporating citizen voices—the 

majority of which are often unheard amid the clamor of interest groups—into 

the policymaking process.37

Democratic deliberation encourages 

participants to view issues and questions 

from different perspectives. 3 8 A s 

recognized by the moral philosopher 

John Stuart Mill, when an individual 

contributes to decisions that impact the 

public, he must, “weigh interests not his 

own; ...be guided, in case of conflicting 

claims, by another rule than his private 

partialities; [and] apply, at every turn, 

principles and maxims which have for 

their reason of existence the common 

good....”39 In the deliberative process, 

participants must look outside their 

own interests and consider matters of 

common concern from the perspective 

of the broader public interest—an aspect of deliberation that is featured 

prominently in the CHAT exercise, where participants must choose plans 

not simply for themselves, but for entire communities. Exercises like CHAT 

demonstrate how deliberative processes can help individuals consider others’ 

positions when making collective decisions about matters of public concern; 

“The process can also increase 

the likelihood the priorities will be 

acceptable to the public. We often 

hear the public feeling like someone 

else has imposed priorities on them, 

and the limits are simply somebody 

else’s ill-conceived ideas. But to 

the extent that they are involved 

themselves in making these tough 

choices, they appreciate the 

decisions that are made.”

Danis, M., Head, Section on Ethics and Health 

Policy, Department of Bioethics, National 

Institutes of Health (NIH) Clinical Center. 

(2015). Facilitating Public Dialogue about 

Bioethics. Presentation to the Bioethics 

Commission, September 2. Retrieved March 

23, 2016 from http://bioethics.gov/node/5265.
29

Democratic Deliberation in Bioethics II

such decisions will then be justifiable to and regarded as legitimate by those 

who are bound by them.

National bioethics bodies can help to facilitate the deliberative process.40 When 

constituted in a balanced way, bioethics bodies are designed to be conducive to 

deliberation, with members from diverse backgrounds and disciplines engaging 

in reasoned give-and-take regarding matters of public concern.41 Acting as 

a form of national conscience, bioethics commissions can provide a public 

forum for consideration of concerns that are too complex, divisive, or entwined 

in the hands of interest groups to be addressed meaningfully by the U.S. 

Congress or other decision-making bodies. In a New York Times article and 

in public comment to the Bioethics Commission, bioethics scholar Alexander 

Capron emphasized the Commission’s role in introducing the ethical, social, 

and scientific implications of biomedical advancements to the public in an 

organized way so as to encourage broad democratic deliberation: “[W]e’ve 

come to rely on more diverse bodies, like the bioethics commissions that have 

advised successive presidents since 1979. The challenge for any commission 

is to move these issues out of federal meeting rooms and engage the general 

public in deliberating about them in town halls, churches, schools and living 

rooms across the nation. Experts can help clarify the issues but policymaking 

ought to arise from a more democratic process.”42

Although deliberation cannot make otherwise incompatible views compatible, 

it can help clarify what is at stake, elucidate points of agreement, help decision 

makers assess the widest range of public-spirited positions, and determine how 

much weight should be afforded to the different expressed preferences.43 The 

success of this process in dealing with inescapable disagreement demonstrates 

that on concerns of great public interest with weighty ethical dimensions 

democratic deliberation is an essential tool for building policy that reflects and 

responds to public views. Democratic deliberation contributes to constructive, 

ethical decision making by expanding and improving public discourse. 

Embedded within this process is mutual respect among citizens, which is a 

core value of our constitutional democracy.

At What Level Is Democratic Deliberation Useful?

Making decisions in a large and diverse democracy is complex. Important 

decisions need deliberative forums of various types and sizes. Democratic 
30

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

deliberation can occur in many ways and at different levels of decision 

making, including among international, national, state, and local bodies. It 

also happens in smaller community-level organizations (e.g., schools, churches, 

hospitals, and universities). These different deliberative levels and venues reflect 

the complexity of decision making in a democracy and can be understood as 

interacting parts of a larger deliberative system that also accommodates other 

forms of decision making.44

“[T]he kinds of public deliberation about bioethics and regarding bioethics within the 

government is not and cannot and should not be restricted to groups with bioethics in their 

name or bioethics in their mandates; that these kinds of questions are present throughout 

the government’s day-to-day work in health and medicine and not just in the obvious 

issues around genetics and pandemic preparedness and things like that, but how the FDA 

[Food and Drug Administration] weighs the risks and benefits of individual pharmaceuticals, 

how we debate the quality of evidence regarding preventative strategies, how we think 

about prioritizing vaccines as part of the recommended vaccination schedule.”

Schwartz, J., Harold T. Shapiro Fellow in Bioethics, University Center for Human Values, Princeton University. 

(2015). Roundtable Discussion with the Bioethics Commission, May 27. Retrieved March 24, 2016 from http://

bioethics.gov/node/4946. 

The Bioethics Commission is a federal advisory committee and, as such, has 

deliberative features built into its structure. The Federal Advisory Committee 

Act—the act that governs all federal advisory committees—requires that 

committee meetings be open to the public with sufficient prior public notice; 

that those who are interested be permitted to attend, appear, or file comments 

with a committee; and that documents made available to or prepared for and 

by a committee be publically accessible.45 Given its charge and its defined 

function under the act, the Bioethics Commission has deliberated publicly 

about many pressing questions of public concern. In the case of pediatric 

medical countermeasures, described in the following section, the deliberative 

function of the Bioethics Commission facilitated uptake of one of its key 

recommendations by other agencies across the federal government.

Deliberation also can occur on a global scale. World Wide Views, an 

organization supported by the Danish Board of Technology, has developed a 

method for hosting citizen deliberations on a global scale around a particular 

topic.46 For example, the most recent global deliberation gathered 10,000 

individuals at 97 sites across 76 countries to discuss climate and energy.47 At each 
31

Democratic Deliberation in Bioethics II

site, organizers recruited 100 participants of representative diversity, provided 

them with educational preparatory materials, presented key policy questions for 

moderated groups of five to eight participants across five sessions, and asked those 

participants to vote on the questions at the end of each session.48 Key findings 

from the deliberations were connected to policymaking through presentations 

in New York City at the United Nations and in Paris at events surrounding 

the 2015 United Nations Climate Change Conference.49 Previous World Wide 

Views deliberations have included global climate change and biodiversity. These 

global events demonstrate that individuals from diverse nations can participate 

in meaningful deliberations involving policy concerns at the nexus of science and 

ethics. Such a model can be extended to other pressing bioethics topics.

Highly controversial questions also have been deliberated at the state level. 

The ethical questions of if and when life-sustaining treatments for critically 

ill patients should be removed and who should make such decisions have 

challenged bioethicists, health care workers, and family members for decades. 

The New York State Task Force on Life and the Law dealt with this topic 

and published multiple reports tackling it from different angles, including a 

report about do-not-resuscitate orders, one about physician-assisted dying, and 

another about appointing surrogates for making decisions about end-of-life 

sustaining treatment when the patient is unable to communicate.50

The Task Force is an example of a body designed to deliberate on the ethical 

dimensions of law and policy at the state level. It was established by Governor 

Mario Cuomo in 1985 and is a standing body consisting of 23 appointed 

experts who volunteer their time to assist the state in developing public policy 

regarding the interface of medicine, law, and ethics. The Task Force comprises 

leaders in religion, philosophy, law, medicine, nursing, and bioethics and 

is chaired by New York State’s Commissioner of Health.51 It has produced 

influential reports on cutting-edge bioethics topics, including surrogate 

consent for human subjects research, assisted reproductive technologies, 

organ transplantation, dietary supplements, genetic testing, and allocation 

of ventilators during an influenza pandemic.52 Ten of the Task Force’s 

recommendations have been adopted as legislation or regulation in New 

York, and they have substantially affected health care delivery in the state. 

Additionally, other states, including Georgia, Illinois, Massachusetts, and 

Vermont, have embraced the Task Force’s recommendations as models for their 

own legislation.53
32

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

At the institutional level, hospital ethics committees bring together a range 

of perspectives and voices from within the institution to deliberate policies 

relevant to its functioning. These committees can serve both educational and 

advisory purposes. Hospital ethics committees typically include physicians, 

nurses, and other health care professionals who have an interest in ethics.54 The 

committees also might include patient representatives or community members 

who are not hospital staff.55 A central function of hospital ethics committees 

is to assist in resolving complex ethical problems that arise during care and 

treatment of individual patients in the institution. Although individual cases 

are decided privately, not deliberated publicly, recommendations of ethics 

committees also are used to guide institutional policies that have complex 

ethical dimensions (e.g., patients’ rights, end-of-life decisions, and staff and 

family conflicts).56

How Does Democratic Deliberation Work?

As a public advisory body, the Bioethics Commission has used deliberative 

processes to formulate recommendations regarding some of the country’s most 

challenging bioethical dilemmas. Although context, topic, timeline, resources, 

and other variables can affect how democratic deliberation is conducted, 

the deliberative process should have certain general features that can be 

adapted to suit the needs and goals of a particular group. In the case of the 

Bioethics Commission, the features are illustrated by the steps followed in 

our deliberation on pediatric countermeasure research. In 2013, the Bioethics 

Commission released its report on research with children to study medical 

countermeasures for use in the event of a bioterrorist attack: Safeguarding 

Children: Pediatric Medical Countermeasure Research (Safeguarding Children).57

The process of democratic deliberation was essential to arriving at 

recommendations that all members could support and that could have a 

critically important practical impact. After more than a year of intense 

deliberation that included four public meetings and input from diverse 

experts and stakeholders, the Bioethics Commission recommended that 

testing of medical countermeasures be conducted by using progressive age 

de-escalation (see following Text Box). The Biomedical Advanced Research and 

Development Authority and the Centers for Disease Control and Prevention 

subsequently conducted a study of anthrax vaccine that provided the basis for 
33

Democratic Deliberation in Bioethics II

using informed age de-escalation with pediatric research participants.58 The 

uptake of this recommendation demonstrates that public deliberation can be 

an effective process for finding a reasoned way forward on some of the most 

morally controversial and difficult science policy questions that our society 

faces. This process followed the steps for deliberation outlined in this section. 

Examples of real deliberation from those meetings are displayed in Figure 3. 

The following steps serve as a guide for those planning a deliberative activity as 

they make choices about the design of the process.

PROGRESSIVE AGE DE-ESCALATION

In its report Safeguarding Children: Pediatric Medical Countermeasure Research, the 

Bioethics Commission recommended that pre-event pediatric medical countermeasure 

research proceed through progressive age de-escalation whenever possible. By assessing 

and evaluating risks from a group of young adults, age de-escalation can be used to guide 

the research design and the estimate of risk level for a group of older children; those 

results can be used to characterize the research risks for the next younger age group, and 

so forth. This recommendation represents a compromise between those who believe that 

being prepared for an emergency is of the utmost importance, even if research poses more 

than minimal risk, and those who believe that it is never acceptable to expose children to 

more than minimal risk without the prospect of direct benefit.

Presidential Commission for the Study of Bioethical Issues (PCSBI). (2013, March). Safeguarding Children: Pediatric 

Medical Countermeasure Research. Washington, DC: PCSBI.

Begin with an Open Question and Consider Distinct Points of View

Democratic deliberation is best suited for questions or complex topics with 

no clear consensus about a way forward. One bioethics topic particularly 

well-suited for democratic deliberation is surrogate consent for participation 

in research. This topic has been debated for decades and, although progress 

has been made toward resolving the questions of if and how surrogate consent 

might be provided for participation in research, questions remain. As the 

Bioethics Commission recognized in its report, Gray Matters: Topics at the 

Intersection of Neuroscience, Ethics, and Society, legal guidance on this topic is 

inadequate and varies considerably by state.59 Research indicates that when 

members of the public are given the opportunity to engage in a deliberative 

discussion about this topic, considerable progress can be made toward practical 

solutions.60 The Bioethics Commission modeled democratic deliberation on 

this topic at the federal policy level and succeeded in influencing federal policy 
34

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

in the form of a proposed change to the interpretation of human subjects 

protection regulations.61 Because state and local laws and policies are also 

involved, continued deliberation at other levels is necessary—in fact, the New 

York State Task Force, described in the previous section, also confronted this 

question and succeeded in changing relevant state policies. The problem of 

consent capacity demonstrates that a topic might be well-suited for deliberation 

at one level, but the relevant questions and goals on the same topic might vary 

when deliberated at another level.

Similar to the question of surrogate consent for research, topics for deliberation 

should allow for discussions that are not purely theoretical; rather, the topics 

in question should have practical implications—deliberations should involve 

questions about how we can move forward and what should be done.62 As Figure 

3 illustrates, the question of medical countermeasure research, and specifically 

if pediatric research on the anthrax vaccine should proceed, was a complex and 

challenging topic that required a practical answer and a path forward.

FIGURE 3

STEPS FOR DELIBERATION

Begin with an open policy question

Time deliberation for maximum impact

Invite input from experts and the public

Foster open discussion and debate

Develop detailed, actionable recommendations 
35

Democratic Deliberation in Bioethics II

STEPS FOR DELIBERATION – EXAMPLE IN ACTION

Safeguarding Children: Pediatric Medical Countermeasure Research

National Biodefense Science Board, October 2011 ∙ Before an anthrax attack occurs, should 

pediatric research testing the safety and degree of immune response to an anthrax vaccine go 

forward? “The issue should be referred to an appropriate review board to formally address the 

ethical considerations. This board should include ethicists and public representation.”

Letter from Kathleen Sebelius, Secretary of Health and Human Services, to the Bioethics 

Commission, January 2012 ∙ “Given the complexity and sensitivity of this issue, I ask that the 

Commission consult with a range of experts within and outside the United States Government, to 

include the medical and scientific communities in addition to non-profit organizations and other public 

constituencies. I ask that the Commission provide me with a report of its findings, as well as any recommendations 

and suggestions the Commission deems appropriate. I would welcome the opportunity to further discuss a timeframe 

for this project that is mutually agreeable, taking into consideration both the urgency and complexity of the issue.”

Commission Meeting, May 2012 ∙ Dr. Gutmann, Chair: Is there a vaccine, anthrax vaccine for 

adults, and does that allow us to extrapolate that there could be a safe one developed that could 

be tested at minimal risk for children? In other words, that's a big question but I think we need 

some baseline here as to what the factual records suggests about one of the questions we're very 

specifically being asked to answer. 

Dr. Robert Nelson, Senior Pediatric Ethicist/Lead Medical Officer, Office of Pediatric Therapeutics, Office of the 

Commissioner, Food and Drug Administration: The anthrax vaccine is approved for adults for prevention. I mean, 

it's disbursed in the military and given under that indication...In other words, in the case of an event, you would 

then deliver it...There's no data in pediatrics at all.

Commission Meeting, November 2012 ∙ Bruce Lockwood, Vice President, USA Council of International 

Association of Emergency Managers: Absent the security of prepositioned antibiotics in-home, pre-event 

vaccines, and increased awareness about the need to simultaneously protect first responders and their 

households, there is a distinct possibility for degraded emergency services. The potential for this cascading 

effect keeps me awake at night. It also underscores the necessity for the development of a pathway for licensing 

vaccines, including AVA for children.

Commission Meeting, November 2012 ∙ Dr. Gutmann, Chair: We don't want to begin with a 

statement up front that basically decides issues, as opposed to opening our minds and any 

groups' minds to thinking about all of the steps that have to go through.

Dr. Arras, Member: This research will give us a smidgeon of the evidence.  It is not going to tell us 

whether this particular vaccine is safe or effective...it is going to give us just one small step in that direction, 

which a lot of our panelists said, well, you know, it is better than nothing and you’ve got to start somewhere. 

Dr. Kucherlapati, Member: The goal for society as a whole is to try to keep all of the population, including the 

children, to be as healthy as possible...There is no human enterprise that is completely devoid of risk.  

And so one has to be willing to accept some level of risk and I don’t know what that level of risk is.

Safeguarding Children Report, March 2013 ∙ The Bioethics Commission concluded that higher risk 

is unacceptable in pre-event research as such research does not directly benefit the child 

participants and the likelihood that the results of such research would benefit other children 

is unknown or unknowable.... Minimal risk pediatric research should employ progressive age 

de-escalation whenever possible, from the oldest group of children to the youngest. p. 20, p. 4

Adapted from deliberations during Bioethics Commission meetings. Transcripts available at http://www.bioethics.gov.
36

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

Debates that involve deep disagreement and seemingly incompatible moral 

values, but that also have broad public impact and require concrete action, 

are particularly suitable for democratic deliberation in which the emphasis 

is on providing mutually acceptable justifications for the policy to those 

who will be bound by it.63 The Community Ethics Committee in Boston, 

a group of citizens who provide feedback to Harvard teaching hospitals on 

policies with ethical dimensions, is an example of how diverse members of 

the community can deliberate to propose answers to emotionally charged and 

value-laden ethical questions. One such topic addressed by the Community 

Ethics Committee was whether pediatric patients with neurodevelopmental 

disabilities should be treated differently than other patients when listing them 

for organ transplantation.64 The Committee’s process included hearing from 

individuals and family members affected by the discussion topic, followed 

by deliberation regarding responses to the challenging ethical question.65

Interdisciplinary deliberation similar to that of the Community Ethics 

Committee can produce nuanced responses to problems, drawing from 

relevant expertise across many perspectives.66

Democratic deliberation is especially effective for decisions and policies related 

to emerging technologies. Advances in science, medicine, and technology offer 

tremendous promise and potential benefits to individuals and society and also pose 

known and unknown risks, especially when their consequences are not yet wellunderstood. Because of their novelty, emerging technologies present uncertainty, 

which can make calculating how to promote innovation while also minimizing 

harm difficult. Thus, careful and iterative review is necessary. Deliberation among 

the scientific community, policymakers, and 

the public fosters open debate, helps educate 

stakeholders and the public, and ensures 

that a broad constituency is represented in 

the outcome. It can be a helpful approach to 

monitoring and facilitating use of emerging 

technologies. 67 Typically, democratic 

deliberation about ethical controversies 

gives voice to the public’s views about 

content and application of ethical norms 

and facilitates the public’s standing in health 

and technology policy. 

“The first and, in many ways, I think 

the most important [reason for 

public engagement], is to hear the 

often unheard voices, by which I 

mean that often silent majority of 

people beyond the organized and 

vociferous stakeholder groups.”

Jackson, R., Executive Chair, Sciencewise. 

(2015). Facilitating Public Dialogue about 

Bioethics. Presentation to the Bioethics 

Commission September 2. Retrieved March 

25, 2016 from http://bioethics.gov/node/5265.
37

Democratic Deliberation in Bioethics II

Time the Deliberation for Maximum Impact

Deliberation optimally is conducted when a topic is ripe for discussion—

meaning relevant facts are established—and ready for potential policy 

change—meaning an opportunity exists to make a decision and change a 

policy or law in response to the deliberation. Enough time to deliberate should 

be available before a decision becomes absolutely necessary. When the Bioethics 

Commission deliberated about pediatric medical countermeasures in 2012, the 

fundamental question was whether research with children to determine safety 

and effectiveness of the anthrax vaccine for individuals aged less than 18 years 

should be conducted before a potential bioterrorist attack occurs. The anthrax 

vaccine is currently approved for use in adults only.68 These deliberations were 

conducted with time to make a reasoned and ethical decision and to have a 

new policy in place before an attack occurs (Figure 3).

Because pre-decisional timing is impossible in the midst of an emergency, 

ensuring that public officials anticipate and are vigilant about ethical 

challenges that might arise during an emergency is all the more important. 

Engaging in deliberative discussions in advance will aid decision making when 

an emergency does arise. In its report Ethics and Ebola: Public Health Planning 

and Response (Ethics and Ebola), the Bioethics Commission considered some of 

these challenges as they arose during the 2014–2016 Ebola epidemic in western 

Africa. It recognized that democratic deliberation is key to preparedness for 

future public health emergencies, given that the success of public health 

policies depends, in large part, on their perceived legitimacy to individuals 

and communities most affected by them. Decisions made both before and 

during public health emergencies, particularly related to measures that might 

restrict individuals’ liberties, should be deliberated democratically to ensure 

that they are viewed as legitimate, supported by reasons that include bestavailable scientific and public health evidence, and can be revisited in light of 

rapidly changing information.69 To the extent possible, deliberation should be 

conducted in advance of an emergency because it might be impossible while 

the emergency is ongoing.

Experiences on the ground in western Africa during the Ebola epidemic 

demonstrate that, even in the midst of a devastating public health crisis, 

committing time and resources to public deliberation is both possible and 

productive. In Liberia, UNICEF (United Nations) rapid-response teams 
38

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

engaged with communities in some of the most devastated areas through 

house-to-house visits, town hall meetings, and focus group discussions about 

urgent concerns, including prevention measures, reporting and isolation of ill 

family members, burial practices, and stigma.70 In Guinea, the Centers for 

Disease Control and Prevention (U.S.) worked with community members 

to host seven town hall meetings with more than 1,000 participants, each 

of which lasted until every participant’s concern and question had been 

addressed.71 These efforts highlight the importance of creating opportunities 

for communities to deliberate together on the most urgent matters of common 

concern, even in the midst of an emergency.

Invite Input from Experts and the Public

Establishing the scientific and other empirical evidence about a topic is 

an essential step in the democratic deliberation process. Sometimes, new 

information will emerge during deliberations, or existing information will 

change. Figure 3 illustrates Commission members learning new information 

from experts in real time around the deliberation table. The task of gathering 

facts is best understood not as a step that is performed once at the outset of the 

deliberation, but rather as an iterative process where relevant information aids 

the deliberation as new facts emerge. Moreover, those leading or participating 

in the deliberation might disagree about the facts of a given topic. Ensuring 

all purported facts are checked through an established and reliable mechanism 

is an essential step to take both before and during deliberation. Providing 

established facts in the form of accessible background materials available 

to all participants is important before starting deliberation, but it is equally 

important during deliberation as well.72

In its own work, the Bioethics Commission has dealt first hand with the 

challenge of establishing the facts around a question while engaging in its 

deliberation. When conducting its deliberations on the applications of 

neuroscience to the legal system, the Bioethics Commission aspired to 

use substantiated facts to avoid using exaggerated or unverified scientific 

claims. The Bioethics Commission noted in its report on neuroscience that, 

especially in the courtroom where life and liberty are at stake, the expert 

invocation of unsubstantiated facts or unverified scientific conclusions is 

ethically indefensible. Sometimes, review of the literature revealed two 

or three published articles describing neuroscience findings linking, for 
39

Democratic Deliberation in Bioethics II

example, a particular brain region with violent or impulsive behavior. Rather 

than assuming that this kind of evidence was ready for use as evidence in a 

criminal trial, the Bioethics Commission endeavored to investigate whether 

findings were validated, replicated, or challenged by other studies. Using 

reliable and validated scientific facts allowed the Bioethics Commission to 

make practical and reasoned recommendations regarding use of neuroscience 

in the courtroom, including a recommendation to avoid overstatement and 

unfounded conclusions.73

When deliberating while information is rapidly changing, establishing facts 

as much as possible at the outset is crucial; however, willingness to adapt to 

changing circumstances and reestablish agreed-upon facts, if they change, 

is also essential. As described previously, in Ethics and Ebola the Bioethics 

Commission discussed the importance of democratic deliberation before and 

during a public health emergency, acknowledging the challenges of deliberating 

while information is rapidly changing.74 Even outside of the emergency context, 

facts and circumstances sometimes change during the course of or after a 

deliberation. Designed to deal with the dual complexities of social change and 

imperfect knowledge, deliberative bodies can always welcome improved and 

updated information to better guide their ongoing deliberations.

For a structured deliberative activity, background materials should be prepared 

by objective parties or by experts holding various views on a contested topic. 

The materials also might include a reasoned argument on different sides of 

a question, to model for participants how to use established facts and ethics 

principles to form opinions with fully formed justifications. However, deciding 

what to include in these materials—that is, deciding what the established facts 

are—is not always straightforward. Reaching agreement between experts 

on what constitutes balanced and accurate information might be difficult, 

particularly when the topic is new or controversial or when those preparing the 

materials are invested in particular views.75 The Bioethics Commission strived 

to achieve a balanced and objective gathering of evidence by hearing from a 

diverse set of experts during its public meetings. These experts reflected the 

interdisciplinary nature of the relevant topics. Often the panelists disagreed 

with one another, and listening to the reasons they gave for their positions 

helped Commission members form or modify their own views.
40

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

“[D]eliberation needs facts, but it 

doesn’t end with facts. The issues 

are too important to be left for 

scientific experts.”

Thompson, D., Alfred North Whitehead 

Professor of Political Philosophy, Faculty 

of Arts and Sciences; Professor of 

Public Policy, John F. Kennedy School of 

Government, Harvard University (Emeritus). 

(2015). Facilitating Public Dialogue about 

Bioethics. Presentation to the Bioethics 

Commission, September 2. Retrieved 

March 25, 2016 from http://bioethics.gov/

node/5265.

Multiple factors should be considered when 

deciding whom and how many individuals 

to include as participants in a deliberative 

process. For national deliberative polls, 

which do not usually involve deliberative 

decision making but often inform decision 

makers, the aim is for the participants to 

reflect the nation’s population.76 This might 

mean selecting as many as 500 individuals, 

either randomly or through stratified 

random sampling to ensure that those 

selected reflect the nation’s diversity.77 For deliberative processes that fulfill the 

decision-making function of deliberation, groups made up of one or two dozen 

participants can strike a good balance between including differing perspectives 

while maximizing efficiency and minimizing cost.78

Foster Open Discussion and Debate

Mutual respect and reason-giving are two 

principal values of democratic deliberation. 

Mutual respect serves both instrumental 

and ethical functions. It enables more 

effective deliberation because it enhances 

c om mu n ic at ion a nd le ad s to more 

compromise and productive solutions. 

It also reflects the value of community 

members w it h d iverse perspect ive s 

participating together in the governance of 

a pluralistic society.79

“[A]verage people whose daily 

lives don’t get them involved in 

decision making like is happening 

here, they are just doing their 

jobs, raising their families, living 

their lives—but they do have 

opinions, very strong opinions 

about the things they see in the 

paper or hear on the news. And so, 

if they are given information and 

opportunity, they can contribute to 

the wellbeing of all of us.”

Evans, F., Deliberative Poll Participant, 

What’s Next California (2015). Facilitating 

Public Dialogue about Bioethics. 

Presentation to the Bioethics Commission, 

September 2. Retrieved March 25, 2016 

from http://bioethics.gov/node/5265.

Similarly, reason-giving has both instrumental 

and ethical functions. Instrumentally, it 

helps those engaged in deliberation come to 

a decision based on reasoned arguments that can be justified to and regarded 

as legitimate by those who will be bound by it. Ethically, it reflects the value 

of community members as participants in their democracy. Rather than being 

treated merely as “objects of legislation,” it ensures that they engage with the 
41

Democratic Deliberation in Bioethics II

process and that legislators and other 

policymakers give and respond to reasons 

for laws and policies.80

Although the ideals of mutual respect 

and reason-giving can be challenging to 

maintain in the midst of a contentious 

deliberation, facilitators must create an 

environment that enables participants 

to practice these principles. Facilitators 

can be trained to nurture civility 

during deliberative proceedings.81 Their 

prompts can encourage participants 

to express minority views, to provide 

reasons for their arguments, to consider 

the pros and cons of their own stances, 

and not to demand or expect that the 

group reach a consensus.82

“We stress mutual respect, however, 

because, even more than other ethical 

considerations, it is intrinsically a part 

of deliberation. To deliberate with 

another is to understand the other as 

a self-authoring source of reasons and 

claims. To fail to grant to another the 

moral status of authorship is, in effect, 

to remove oneself from the possibility 

of deliberative influence. By the same 

token, being open to being moved by 

the words of another is to respect the 

other as a source of reasons, claims, 

and perspectives.”

Source: Mansbridge, J., et al. (2012). A Systemic 

Approach to Deliberative Democracy. In J. 

Parkinson and J. Mansbridge. (Eds.). Deliberative 

Systems: Deliberative Democracy at the Large 

Scale (pp. 1-26). New York, NY: Cambridge 

University Press, p. 11. [Original emphasis]

Develop Detailed, Actionable Recommendations

After a compromise, consensus, or agreement has emerged from the 

deliberation, the decisions made must be fed back into the decision- and 

policymaking processes, wherever possible. Deliberations can be linked to the 

policy process in different ways. For example, in the United Kingdom, the 

Sciencewise program was established with the explicit purpose of embedding 

public dialogue in the policymaking process.83 Sciencewise provides advice and 

support directly to policymakers about how to conduct deliberative dialogue 

with the public on a topic, with the aim of ensuring that public dialogue 

is an integral part of policymaking. Findings from the public dialogue on 

mitochondria replacement were integrated back into the HFEA advice to 

the government, which in turn guided its decision to allow patients access 

to this new technology.84 Notably, Sciencewise only engages with topics 

for deliberation about which policy decisions are not yet determined and 

can be influenced by public engagement. The legitimacy of the outcome 

of deliberations increases when stakeholders are involved in initiating and 

designing the activity.85 In the United States, the Oregon Citizens’ Initiative 

Review program selects citizens to deliberate and produce a written analysis 
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

about state ballot initiatives. The analysis is distributed in the official voters’ 

pamphlet, linking the deliberation to the policy process.86 Evaluation of the 

program revealed that a majority of Oregon voters were aware of the process, 

two-thirds of those reading its products regarded them as helpful for voting, 

and reading the analysis improved voter knowledge.87

Benefits of Democratic Deliberation

Democratic deliberation can help groups of citizens and decision makers 

reach consensus when other methods have failed. It also can help disparate 

groups arrive at decisions that are regarded as legitimate by all parties, even 

if not everyone agrees. It fosters mutual respect and understanding among 

individuals with diverse values and viewpoints. These benefits are illustrated 

by examining cases in which the absence of deliberation led to policies that 

likely decreased their public legitimacy. The well-publicized example of 

the development of the Oregon Health Plan—in which a vote by the state 

legislature was insufficient for the public to recognize a policy change as 

legitimate, but subsequent inclusion of the public in deliberation was wellreceived—merits an extended discussion, because it demonstrates the evolution 

of policy on a weighty topic as it is guided by public deliberation.

In 1989, Oregon converted its Medicaid program to the Oregon Health 

Plan, with the aim of expanding the program to all residents living in 

poverty. For more residents to receive this Medicaid coverage, the plan had 

to cover fewer medical procedures. The proposal created a ranking system of 

medical priorities—a list of all medical procedures ranked from most to least 

important. Medicaid would cover procedures to a certain point on the list 

determined by the Oregon legislature.88

Before the creation of this plan in July 1987, the Oregon state legislature voted 

to discontinue Medicaid funding for heart, liver, pancreas, and bone marrow 

transplants. These services were considered optional under federal Medicaid 

rules. The legislators justified the decision on the basis of the high costs and 

low success rates of those procedures, but they made the decision without input 

from the public or health care professionals.89 Nationwide attention focused 

on this decision when Coby Howard, a 7-year-old male with leukemia, was 

denied funding for a bone-marrow transplant.90 After he died, the Oregon 

legislature voted on a measure to appropriate $220,000 from the state’s general 
43

Democratic Deliberation in Bioethics II

fund to pay for transplants for the eight remaining individuals who had been 

denied funding under the new policy. The motion was defeated twice at the 

urging of then state senate president John Kitzhaber, an emergency department 

physician, who argued for development of an evidence-based policy for 

rationing health care.91 Kitzhaber wanted to shift the debate over Medicaid 

funding to focus instead on what, rather than whom, the plan should cover.92

The proposed bill, the Oregon Basic Health Services Act, made provisions 

to expand state health care coverage to include all Oregonians living at or 

below 100% of the poverty level. The bill would create the Oregon Health 

Services Commission (HSC), an 11-member group comprising health care 

providers and consumers. The commission would compile “a list of health 

services ranked by priority, from the most important to the least important, 

representing the comparative benefits of each service to the population to be 

served.”93 HSC would create a new list every 2 years.94 The Oregon legislature, 

provided with estimated costs of placing the funding level at each point on the 

list, would then determine how much of the list would be funded—where the 

cut-off point would be. It would remove the option of cutting program costs 

by changing eligibility restrictions or reimbursement rates. All services needed 

for establishing a diagnosis would be included, even if the treatment for the 

uncovered condition would cost less than the cut-off point.

Because the health services ranking list was the central component of the Oregon 

Health Plan, designers of the program believed that it should be developed 

using a method that would garner public confidence and trust. Hence, public 

participation in the ranking process was encouraged. The bill required that HSC 

have open meetings exclusively and sponsor forums for members of the public to 

contribute their views. A key lesson from public outcry over the earlier decisions 

to cut funding for transplantation of certain organs was that, for the policy to 

succeed, the public must be part of the decision-making process.95

HSC was required to hold public hearings to solicit input from “advocates for 

seniors; handicapped persons; mental health services consumers; low-income 

Oregonians; and providers of health care” and actively seek “consensus on the 

values to be used to guide health resource allocation decisions.”96 The public 

hearings were intended to provide an opportunity for groups with different 

views to express prioritization preferences. The community meetings where 

public involvement was solicited were intended as sessions for gathering 
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

information from the community about what values were important to the 

residents of the state.97 A summary report detailed the 13 themes that members 

of the public thought should guide the ranking process, and in response to 

this report, HSC developed a new ranking process, based in large part on 

the public’s input.98 Even critics who might find the resulting coverage to be 

inadequate can acknowledge that a deliberative process better enables their 

criticisms to be brought to light.

Decisions that affect the deeply held values and welfare of the public, such as 

the allocation of scarce resources for competing health care priorities, cannot 

be left to policy- and lawmakers alone without input from the community 

and affected stakeholders. In the absence of democratic deliberation on policy 

matters of deep public interest, trust in the policymaking process is corroded. 

Including public consensus brought about through democratic deliberation 

helps create policies that are perceived as legitimate by the public, particularly 

when policy decisions have bioethical dimensions—affecting medical care, 

participation in research, and other questions of life and welfare. Thus, the 

Bioethics Commission makes three recommendations for increasing and 

improving use of democratic deliberation in bioethics, with particular focus 

on public policy with bioethical dimensions.

Recommendations

Earlier in this chapter, we described a recommendation in Safeguarding 

Children that the Bioethics Commission made after a year-long process 

of deliberation and that was subsequently implemented at the federal level. 

Such examples demonstrate the success of democratic deliberation in helping 

solve complex bioethical challenges. Developing legitimate policy solutions to 

these challenges requires listening to, considering, and incorporating diverse 

perspectives. Bioethical concerns are often polarizing and controversial, not 

unlike topics debated and discussed among politicians and on the national 

stage. Our role, as a nonpartisan bioethics commission, is to demonstrate 

respectful deliberation of controversial topics as an antidote to the polarized 

political climate, which is increasingly permeated by scapegoating, namecalling, and gridlock, while the urgency and depth of the problems faced by 

the public persist.
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Democratic Deliberation in Bioethics II

The following recommendations, if implemented, would enhance public 

dialogue and deliberation in circumstances in which complex ethical concerns 

are at stake, and would contribute to sound and legitimate public policy for 

health, science, and technology.

Recommendation 1: Guide Bioethics Policy Decisions with Democratic 

Deliberation

Stakeholders in the democratic process at all levels—including communities, 

policymakers, popular opinion leaders, and advisory bodies—should use a 

well-crafted form of democratic deliberation to inform and guide health, 

science, and technology policy decisions and their ethical dimensions. 

Policymakers, communities, and advisory bodies should use democratic 

deliberation to consider morally complex and controversial bioethical 

problems to promote mutual understanding and respect among participants 

as well as greater legitimacy for resulting policy.

Successful democratic deliberation fosters greater individual and mutual 

understanding of problems of common concern, broader public engagement 

with complex policy questions, and legitimacy of decision making. Both 

immediate and long-term benefits result from diverse stakeholders in our 

democracy participating in forums for decision making that reflect the core 

values of democratic deliberation.99

Democratic deliberations should occur at the different levels of decision 

making and involve the depth and breadth of stakeholders necessary to develop 

a way forward on difficult policy questions of broad societal import. Examples 

of deliberation occurring at different levels were described earlier in this 

chapter, including deliberations of this Bioethics Commission at the federal 

level, development of national regulations on mitochondrial donation in the 

United Kingdom, and other initiatives at the state, local, and community 

levels (e.g., the New York State Taskforce on Life and the Law), and in certain 

instances, by institutional ethics committees.

Well-designed deliberations, whether large or small, are structured to ensure 

that all participants are respected and engaged, that minority views and voices 

are heard, and that outcomes are the product of respectful and reasoned 

dialogue among participants with diverse backgrounds, expertise, and 

perspectives. The community consultation conducted by the Oregon Health 
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

Services Commission in the late 1980s and early 1990s, described earlier in the 

chapter, is an example of a well-designed deliberation. The deliberative process 

was successful because it encouraged community members and policymakers 

to reflect on their values and arrive at a solution outside of their original 

predisposition in a way that left the public feeling respected and included 

in the process. Public deliberations like these are iterative processes, open to 

revision and self-correction.

e

From formal and structured deliberative polling activities to less formal 

community conversations, democratic deliberation is an effective element of 

decision making in many different contexts. An extensive body of research 

has been conducted during past decades to determine the methods for group 

communication and deliberation that are most effective and conducive to 

success. That research has resulted in a growing body of literature detailing 

effective methods and best practices for deliberation, some of which was 

summarized in the previous discussion. Those who organize and facilitate 

deliberative activities should review the process for democratic deliberation, 

including the sections presented previously on when and for what kinds 

of topics democratic deliberation should be conducted, how to conduct 

the deliberations, and how those deliberations can contribute to the policy 

process. Taking lessons from past successful—and unsuccessful—methods of 

deliberation will help organizers tailor their activities to the population who 

will participate and the topics under consideration.

Recommendation 2: Conduct Deliberative Activities in Ways Conducive 

to Mutual Respect and Reason-Giving Among Participants in 

Accordance with Best Practices

Organizers of deliberative activities should ensure that deliberation is 

accomplished in accordance with best practices established in the broad body 

of scholarly literature. At a minimum, effective deliberative processes require 

participants to give reasons for their arguments and to show respect for fellow 

participants. In addition, the set of concerns for deliberation should raise 

questions for which practical decisions need to be made, and the deliberations 

should be intended and designed to influence how those decisions are made.
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Democratic Deliberation in Bioethics II

Individuals and entities that organize deliberative processes, or would like 

to incorporate democratic deliberation into their decision-making processes, 

should review and incorporate existing literature on methods and best 

practices. Steps in the process were described previously and are included in 

Appendix I (Steps for Deliberation). Other considerations include how long 

to deliberate, how many individuals to include, whether to seek a random 

sample or ensure inclusion from members of certain groups, what preparatory 

materials to make available, and how to incorporate expert consultation and 

supply useful information for those engaged in deliberation. Regardless of 

variations in the deliberative process, at a minimum, it should require that 

participants give reasons for their views and show respect for one another. 

As a concrete demonstration of respect, decisions should aim, if possible, to 

enable minority practices to continue to flourish, provided these practices do 

not threaten the common good or unduly burden the majority’s ability to 

implement the agreed-upon policy. Additional best practices will depend on 

the particular goals and context of the deliberative activity. For example, the 

2014–2016 Ebola epidemic in western Africa raised ethically relevant policy 

questions regarding quarantine of returning health care workers and research 

conducted during a public health emergency. The Bioethics Commission 

recognized the need to respond to these pressing challenges swiftly and 

effectively through transparent, democratic, and public deliberation. The 

Bioethics Commission assembled a diverse group of experts and stakeholders, 

including representatives from affected communities, and adapted its 

deliberative process to meet an accelerated timeline.100

e

Democratic deliberation has been demonstrated to be an effective tool for 

facilitating public engagement and fostering an environment of mutual respect. 

But deliberation is not a one-size-fits-all process—it can involve substantially 

different variables and methods. Measures for comparing different deliberative 

methods and deliberative and non-deliberative processes of decision making 

should be developed to further support the goals of Recommendation 2. For 

example, many scholars agree that incorporating public opinion into bioethics 

scholarship and health policy development is important. Further research 

to determine the comparative value and success of deliberative activities in 

this context will help guide the process of soliciting public views and using 
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

them to best effect. One study, for example, compared the relative merits 

of opinion surveys versus deliberative processes for gauging the views of the 

public in decisions about how and whether to obtain surrogate consent for 

research participation.101 The authors concluded that opinion surveys risk 

eliciting superficial and uninformed views that might be insufficient for 

guiding policymaking. Democratic deliberation, by contrast, ensures that 

participants are educated about the topic under discussion and its nuances and 

complexities, and by its very nature necessitates that participants give reasons 

for their views. More research on the effectiveness of deliberation will improve 

the empirical evidence for best practices in different contexts.

Recommendation 3: To Further the Practical Contribution of 

Deliberation in Bioethics, Conduct Additional Research on the 

Effectiveness of Deliberative Methods

Scholars of democratic deliberation, along with individuals and organizations 

using democratic deliberation for decision making, should continue to 

assess the effectiveness of particular deliberative methods as tools to address 

complex bioethical challenges. These studies should evaluate the processes 

and outcomes of different kinds of deliberation and establish measurements 

of success.

During the past decade, scholars have begun to develop and refine measures 

for evaluating the effectiveness of deliberative activities.102 In evaluating these 

activities, they have been attentive to both processes and outcomes, but more 

work remains. Specifically, formative and process evaluations should include 

questions about how to conduct democratic deliberation to maximize mutual 

respect, optimize engagement, and elicit less commonly held perspectives to 

create an inclusive discussion of policy proposals. Public health policies are 

a particularly important area for public deliberation because they require 

cooperation among substantial portions of the population. A deliberative 

approach that engages affected communities and uses deliberative processes to 

reach policy solutions that are both ethically and scientifically sound leads to 

public health policies with greater legitimacy for those most affected by them.

Evaluation of the outcomes of public deliberation should include an 

understanding about how to design deliberative activities to produce the 

desired goals. Goals include a more informed voting public, a potential policy 
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Democratic Deliberation in Bioethics II

change, and a greater public sense of inclusion in law and policy decisions. 

An inclusive and broadly shared framework for evaluating both processes and 

outcomes of deliberation would be a valuable tool to encourage policymakers 

and other leaders to use democratic deliberation as an integral part of the 

decision-making process. Empirical evidence regarding what works and what 

does not—with a focus on how to change what does not—is essential to 

implementing sound strategies to improve public policy.103

* * *

Deliberation is especially necessary in our current and increasingly polarized 

political climate. As science and technology rapidly advance, often what we 

technically can do becomes clear before we have assessed what we ethically 

should do. In these areas, deeply held personal values are at play, life and death 

can be at stake, and the addition of perspectives from diverse stakeholders 

and public citizens can enrich and add legitimacy to policy decisions. Wellreasoned and effective deliberation about bioethics is not possible without 

participants who are educated about the relevant science and technology and 

who are clear about the values they bring to the discussion. Ethics education 

is necessary for effective democratic deliberation about bioethics—a topic 

addressed in the next chapter of this report.
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology
51

CHAPTER 3

Bioethics Education
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

We must remember that intelligence is not enough. 

Intelligence plus character—that is the goal of true education. 

The complete education gives one not only power of concentration, 

but worthy objectives upon which to concentrate.” 104

—Dr. Martin Luther King, Jr., American civil rights leader, 1929–1968

I

n fall 2010, President Barack Obama charged the Bioethics Commission 

with overseeing a fact-finding historical review of research conducted and 

supported by the U.S. Public Health Service in Guatemala in the 1940s that 

involved deliberately exposing human subjects to certain sexually transmitted 

diseases without their consent. Records of this research, which involved 

vulnerable populations, including prisoners and hospitalized psychiatric 

patients, were discovered in 2003. When the discovery was made public in 

2010, the U.S. Government responded swiftly to the revelation with apologies 

to the Guatemalan government and its people.105

In addition to the fact-finding investigation, the President charged the 

Bioethics Commission with reviewing contemporary human subjects research 

protections to determine if they are adequate to safeguard the health and 

wellbeing of human participants in research. To answer the charge, the 

Commission conducted a thorough historical review, examining thousands of 

documents to learn the details of the 1940s research; it conducted four public 

meetings in 1 year and invited experts from diverse subject areas. This work 

highlighted numerous topics in professional and research ethics, both of which 

served to educate both the public and the research community.

After the release of its report, “Ethically Impossible” STD Research in Guatemala 

from 1946 to 1948, and a companion report, Moral Science: Protecting 

Participants in Human Subjects Research, the Bioethics Commission released 

eight educational modules to accompany the reports, including a study guide 

companion to the report, which was later translated into Spanish.106

Regardless of whether we are aware of it, bioethics affects us all. This is the 

single most salient reason that ethics education and ethics literacy are essential 

for guiding both individuals and deliberative bodies. As individuals, we have 

no alternative but to navigate an increasingly complex health care system for 
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Bioethics Education III

ourselves and our loved ones. As voters, taxpayers, and community members, 

we must decide what communal values should guide policy on fundamental 

questions of birth and death, health, and wellbeing—or these will be decided 

for us. As scientists, clinicians, and lawyers, to fulfill our professional 

obligations, we must resolve dilemmas, understand the obligations of our 

professions, and attend to the broader social impacts of our work. In each of 

these roles, the ability to recognize, articulate, and resolve ethical challenges 

is absolutely essential.

National bioethics bodies like ours can accept an increasingly important 

role by encouraging and supporting bioethics education. This Bioethics 

Commission has strived to fulfill this role in several ways. We have developed 

educational materials related to our reports to reach diverse audiences. We 

participate in deliberation and learn details of particular topics to gain a deeper 

understanding of how ethics principles we have learned throughout our lives, 

both personally and professionally, should be applied to the open questions 

we face as a federal commission. In modeling this educational component of 

deliberative democracy, we aim to encourage future generations of bioethicists, 

scientists, health care providers, other professionals, and the public at large to 

become informed and make reasoned decisions in this pluralistic society. As 

the Bioethics Commission nears the end of its tenure, we encourage future 

bioethics advisory bodies to continue to fulfill this role, as bodies before us 

have done.

Bioethics education cannot be crafted and conducted solely at the national 

level. We also need to build a foundation of ethical reasoning at all levels 

of society. Ethics education is a multilevel and intergenerational process of 

building ethics literacy: a basic understanding of ethics concepts and language 

that can serve as the bedrock of civil discourse and of individual and collective 

decision making. Schools from pre-kindergarten to professional training 

programs can and should incorporate ethics education into their curricula to 

help build the ethics literacy that will enable us to reason through complex 

bioethical problems we all will face. Ethics education can raise the population’s 

ethics and scientific literacy and can help prepare everyone for the difficult 

conversations and decisions that bioethics presents.

We focus here on ethics education primarily in bioethics for two reasons. 

First, bioethics is the area in which we can deploy our Commission’s expertise 
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

to greatest effect. Second, bioethical concerns permeate our culture, society, 

and lifespan. They concern matters of life and death and deeply held personal 

values. They raise fundamental questions of how we should coexist and what 

we owe one another as fellow humans. Bioethics requires us to reason and 

deliberate together, and for that, we all need an understanding of ethics to 

articulate and justify our beliefs, understand how our values intersect with 

those of our fellow community members, and provide the basis for collective 

decision making on matters of common concern.

Throughout its tenure, the Bioethics Commission has emphasized the societal 

importance of bioethics education. It has recommended improving ethics 

education for health, science, and technology students and professionals, 

as well as consumers of health services and technologies. The Bioethics 

Commission’s commitment to strengthening educational efforts to promote 

greater ethics literacy is demonstrated by its numerous recommendations across 

reports for increasing the depth and breadth of bioethics education. Building 

on this commitment and on current attention to national education policy 

after the passage of the Every Student Succeeds Act in 2015, the Bioethics 

Commission takes this opportunity to reinvigorate a national discussion about 

ethics education and our collective responsibility for ensuring that our society 

is prepared to make informed and justifiable decisions about morally complex 

aspects of science, technology, and health policy.107

This section describes how ethics education can be infused throughout all 

levels of education, from primary school through professional and postgraduate 

training. It also addresses how learning about moral topics outside traditional 

learning settings, including as community members, plays an important role 

in creating an informed and engaged public. It then considers some of the 

obstacles to implementing ethics education and how these might be overcome.

* * *

Ethics education encompasses broad instructional practices and experiences 

that develop one’s ability to make and act on considered moral judgments. To 

facilitate clarity, three related but distinct concepts should be distinguished: 

education of bioethicists, bioethics education, and the broader notion of ethics 

education.
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Bioethics Education III

Education of Bioethicists

Education of bioethicists is the process of educating someone to enter the field 

of bioethics. Bioethics is a broad interdisciplinary set of practices that includes 

academic inquiry, policy analysis, and practical guidance relating to science, 

technology, and health topics. Because no single disciplinary path exists for 

entering this field—and this diversity is a key strength—professionals who 

consider themselves bioethicists often have their primary training in one field 

(e.g., law, medicine, nursing, science, or philosophy) and additional formal or 

informal training in ethics or bioethics. This notion of dual competence has been 

a hallmark of those educated in bioethics since the inception of the field.108

Since the early 2000s, the opportunity for formal bioethics training—in the 

form of post-baccalaureate certificates and master’s degrees—has increased 

substantially, in part because of growth in the number of programs in these 

areas offered by universities and other tertiary institutions.109 This trend adds 

to the complexity of longstanding and ongoing discourse about the identity 

and strength of bioethics as an interdisciplinary field.110 Although bioethicists 

play a principal role in certain professional settings, the majority of the 

population will face bioethical challenges throughout their lives and need 

skills to work through them.

“Although bioethics is central to the education of health care professionals, its reach 

should be much broader. Health care is important to all members of society, and therefore 

bioethics should be a concern of every citizen. Every citizen should give thought to whether 

they want to be an organ donor, and to what kind of care they want to receive at the end of 

life. It is, therefore, our responsibility to ensure that all members of society understand the 

importance of bioethics and that we provide opportunities for reflection on these issues.”

Lehmann, L., Director, Center for Bioethics, Brigham and Women’s Hospital; Associate Professor of Medicine and 

Medical Ethics, Harvard Medical School; Associate Professor of Health Policy and Management, Harvard School of 

Public Health. (2014). Deliberation and Bioethics Education: Overview. Presentation to the Bioethics Commission, 

November 6. Retrieved March 22, 2016 from http://bioethics.gov/node/4321.

Bioethics Education

Bioethics education encompasses efforts to engage students in various science, 

technology, and health-related contexts that include complex ethical, social, 

and legal dimensions. One key purpose of bioethics education is preparing 

individuals for making decisions about their own health and that of others.111
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

Bioethics education fosters skills that will help students confront decisions that 

they will inevitably face—how to contend with a difficult medical diagnosis, 

what aspects to consider when making treatment decisions, how to be a good 

caregiver, and how to make plans for the end of life. We can make better 

decisions when we develop and use skills to recognize, articulate, and consider 

the ethical dimensions of how we ought to proceed. Learning these skills is a 

life-long process requiring foundational skills in ethics; opportunities to apply 

these skills are abundant in personal and professional life.

Both formal and informal bioethics education is instrumental to improving 

public understanding of the ethical dimensions of emerging technologies, 

human subjects research, clinical decision making, public health emergencies, 

advances in neuroscience, and more. Bioethics education helps to build 

the scientific and ethics literacy individuals need for understanding the 

implications of these complex matters for their own life as well as that of their 

loved ones and their communities.

“A serious argument can be made 

that, while we teach American 

school children multiple materials, 

largely because we always have, 

we fail to teach them content that 

is vital to full participation in the 

life of contemporary democracy.”

Steiner, D., Executive Director, Johns 

Hopkins Institute for Education Policy; 

Professor, School of Education, Johns 

Hopkins University. (2015). Implementing 

Innovations in Ethics Education. 

Presentation to the Bioethics Commission, 

November 17. Retrieved March 23, 2016 

from http://bioethics.gov/node/5358.

Ethics Education

Everyone, including those training to be 

bioethics professionals and those who might 

encounter a bioethical challenge during 

their lifetime, needs a foundation of general 

ethics education on which to build more 

specific bioethical moral reasoning. Ethics 

education fosters the ability to identify, 

articulate, and act upon justified moral 

positions. It develops skills of critical and 

practical reasoning through which students 

learn to question, strengthen, inform, and 

enrich their own positions in light of others’ perspectives. Ethical analysis and 

reasoning is often coupled with problem-solving and active learning, enabling 

students to challenge, reflect on, and learn how to enact and live up to their 

professed values. Ethics requires that students understand how and why their 

views resemble or differ from others’ views. This aspect of ethics education 

intersects with the values and skills of democratic deliberation, described in 

the previous chapter, including mutual respect and public spiritedness.
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Bioethics Education III

Integration of ethics education into other classroom activities has long been 

part of educational discourse in the United States. In 1749, Benjamin Franklin 

recommended moral teaching for Pennsylvania’s youth, proposing that history 

lessons can be used to build moral character, foster aesthetic appreciation, 

and instill a sense of public spirit, among other aims.112 Ethics education can 

be integrated into existing curricula by introducing subject-relevant ethical 

dilemmas or challenges into classes in which they are likely to arise (e.g., 

the sciences, history, social studies, economics, or media studies). Concrete 

examples and problem-based learning help to ground ethics discussions 

in their practical implications that connect to students’ current and future 

experiences. Understanding complex science topics, for example, is facilitated 

by the critical interpretation skills and intellectual curiosity fostered by ethical 

analysis, and ethics can even “whet students’ appetites” for science, increasing 

interest among students who might otherwise perceive science as uninteresting 

or irrelevant.113 Moreover, both ethics and science are necessary for arriving 

at the best solutions to complex problems in scientific practice and policy. 

Well-reasoned arguments for action must 

be guided by the best available evidence; 

in turn, attaining high standards in ethical 

scientific practice requires honing skills in 

reflection, analysis, and decision making.

Ethics Education Across the Lifespan

Ethics education should start early, building a 

foundation for ongoing learning. Early ethics 

education provides a base on which to build 

skills to engage with the ethical dimensions 

of subjects taught in postsecondary school, as 

well as ethical matters in specific professions. 

In addition, ethics education at different 

stages of life helps individuals confront 

ethical choices as individuals, family and 

community members, and professionals.

Ethics education can and should be incorporated throughout education, from curricula 

“[T]o prepare students for modern 

life, we need to teach in a way 

that cuts across disciplinary 

boundaries to offer skills and 

resources that transfer across 

what is all too often a divide 

between the classroom and life 

and learning and career outside 

of school.... The interdisciplinary 

study of bioethics provides a 

very natural way for teachers 

to reach across disciplines, to 

engage their students in complex 

and real issues, to provide 

relevant learning and research 

opportunities around topics of 

contemporary concern.”

Bishop, L., Head of Academic Programs, 

Kennedy Institute of Ethics, Georgetown 

University. (2015). Implementing 

Innovations in Ethics Education. 

Presentation to the Bioethics Commission, 

November 17. Retrieved March 23, 2016 

from http://bioethics.gov/node/5358.
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

in primary school through secondary school, to undergraduate coursework, 

graduate school, and professional training programs. Ethics education is best 

when it builds on itself over time. To build ethics literacy, broad-based ethics 

education must start early, before students begin to track into more specialized interests and careers. Over time, ethics education should become more 

targeted, and provide preparation for the particular challenges that health, 

science, and technology professionals are likely to face.

“[S]tart early to raise ethical 

literacy... All of us need skills 

to help us resolve ethical issues, 

whether we are a plumber or a 

physician or a scientist...[we will 

need these skills if] we become a 

surrogate decision maker, [and] 

many of us will.”

Lee, L.M., Executive Director, Presidential 

Commission for the Study of Bioethical 

Issues. (2015). Roundtable Discussion. 

Presentation to the Bioethics Commission, 

September 2. Retrieved March 23, 2016 

from http://bioethics.gov/node/5269.

The nature and content of ethics education 

depend on context. With younger students, 

ethics education might consist of a broad 

base of pedagog y about basic moral 

principles by using different age-appropriate 

methods to encourage children to start 

thinking about morality and ethics and 

by using examples they might encounter 

during their lifetime. In undergraduate 

courses, discussion and instruction on 

ethical and social issues might be tied more 

closely to specific subjects—for example, 

a molecular biology class might consider 

the ethics of stem cell research. In graduate or professional school, ethics 

training can be tailored to particular issues that professionals in that field are 

likely to encounter. Mentoring, case discussions, and ethics consultations are 

opportunities for continuing ethics education for professionals throughout 

their careers. At the community level, less formal ethics education can occur 

through discussion forums or opportunities to contribute to local ethics review 

boards or institutional ethics committees. Ethics education is most engaging 

when it addresses situations relevant to an individual’s immediate or nearfuture contexts.114 The following sections describe examples of ethics education 

programs at different levels and educational settings.

Outside the Classroom 

Broadly understood, education encompasses all features of society that inspire 

learning and self-realization.115 On this broad view, as John Stuart Mill 

stated, education is “[w]hatever helps to shape the human being; to make the 
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Bioethics Education III

individual what he is, or hinder him from being what he is not...”116 In the 

context of institutions such as schools, colleges, and universities, education 

takes on a more specific meaning, conveying what “each generation purposely 

gives to those who are to be its successors, in order to qualify them for at 

least keeping up, and if possible for raising, the level of improvement which 

has been attained.”117 Mill’s remarks point out the connections between 

education, ethics, and identity, highlighting the importance of both kinds of 

ethics education.

Moral insights are gained from experiences of all kinds: the circumstances we 

encounter, the challenges we face, and the choices we make. Many individuals 

and diverse social and cultural institutions play crucial roles in broad ethics 

education. Relationships of all kinds are important teachers, even if moral 

instruction is not their main purpose. Families, for one, are a central source 

of learning about values, especially early in life as loved ones communicate 

and instill distinct familial values throughout childhood and into adolescence. 

Parenthood is also educational, providing individuals with new insights that 

lead them to question, develop, and understand their parental obligations. 

Relationships can spark knowledge relevant to moral development throughout 

adolescence and adulthood, revealing an individual’s own capacity for love, 

patience, growth, compassion, and reciprocity.

Communities are also important sources of values, often linking more formal 

articulations of values and principles to individual and community identities. 

In a pluralistic society, individuals participate in and seek out shared ways of 

life, sometimes strengthening old ties and sometimes forming new ones. From 

the implicit messages within the aphorisms passed on through generations 

to the explicit moral education of religious communities, these traditions 

reflect the diversity of ways we learn to live up to our values in practice. By 

participating in and forming communities, instilling character, and fostering 

habits, individuals learn to enact their values in deeds as well as words.

Drawing from complex and varied sources of moral life, a broad ethics 

education does not contradict the more focused goals found in traditional 

learning settings. On the contrary, each influences the other. Whether inside 

or outside the walls of a classroom, different forms of education enrich our 

moral development.
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

Primary School

Ethics education must start early to prepare a strong foundation on which to 

build the ethics skills one needs in adult life, and to help children develop into 

better world citizens as they mature. Teaching ethics to adults or professionals 

as a starting point is inconsistent with evidence of how education and learning 

builds throughout time and with our understanding of moral development. 

Just as we would not expect to develop math skills in an engineer or an 

accountant by starting with calculus, similarly, we cannot expect to develop 

ethics literacy unless we build an early foundation starting with the basics. 

Studies indicate that children as young as 2 years are capable of engaging with 

critical reasoning in moral judgment and can begin to distinguish between 

moral rules and social conventions as early as preschool.118 In early education, 

we can also start to build moral character, including the formation of moral 

sensitivity, moral identity, and lasting habits, all of which are important for 

future ethical decision making.

An innovative example of ethics education in primary school is a program 

developed for students in New South Wales, Australia.119 The curriculum for 

the program is organized around age-appropriate questions, scenarios, and case 

studies that encourage students to think for themselves. The youngest children, 

for example, consider such questions as whether telling others a friend’s secret 

is okay or whether being frustrated with someone justifies physically hurting 

that individual. Older children consider more complex questions for example, 

whether being fair means giving everyone in the group an equal share or 

what counts as cheating. Often the questions are closely related to a child’s 

everyday experiences.120 The program emphasizes both “sequential and spiral” 

learning, meaning the curriculum revisits the questions through progressively 

more detailed engagement as the children get older and advance through the 

program.121 Because the classes are led by volunteers from the community, 

including parents and grandparents, the program also makes a distinctive 

contribution to broader public ethics education and ethics literacy.

The United States does not have national requirements for ethics 

education in schools. Decisions about curricular content and resources 

for implementation of content are under the purview of state and local 
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Bioethics Education III

“Our aim is to have children think for themselves about, for example, the extent to which the 

intention of the agent is important when judging rightness or wrongness of, say, breaking 

a promise. We want children to think about whether we need to take the circumstances 

into account when deciding whether a particular act of lying is wrong. We want them to 

think carefully about their relationships with their friends and to consider whether they care 

about their friends for their friends’ own sakes or whether they might be simply using their 

friends for their own ends, and if they are, whether that’s okay. And we want them to think 

about how important it is to be a good person, to live a good life and, if it is important, what 

character traits we need to develop in pursuit of this goal.”

Knight, S., Curriculum Author, Primary Ethics Limited Australia. (2015). Ethical and Deliberative Skills across the 

Lifespan. Presentation to the Bioethics Commission, September 2. Retrieved March 23, 2016 from http://bioethics.

gov/node/5267.

governments. Character.org, a national nonprofit organization, supports 

character development programs in schools, providing leadership and 

resources to “develop ethical citizens committed to building a just and 

caring world.”122 Their program supports school systems and administrators 

in any district or state, and includes teacher training and lesson plans for 

elementary and secondary educators. Approximately 5,000 U.S. schools 

and districts, representing half a million students, have participated in the 

program since it began in 1998.123

Secondary School

After we have built a foundation of ethics education by developing character 

and moral identity among young children, we continue to cultivate moral 

development in the higher grades. By high school, students’ understanding of 

morality and their own values start to solidify. High school is an opportune 

time to incorporate ethics education and discussion into existing topic-based 

classes—high school teachers can start to incorporate ethical questions into 

existing curricula and to apply ethical reasoning to specific topics and problems 

regarding class content. In secondary school biology, chemistry, social studies, 

history, and other subjects, teachers can incorporate ethical questions or 

problems and exercises with ethical dimensions. Students can apply ethical 

decision-making skills, engage in self-reflection and discussion among peers, 

and begin to understand bioethics concepts.
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

Some mistakenly assume that bioethics education should be provided to 

high-achieving students only.124 Previous research on mathematics education 

has demonstrated that students of higher socioeconomic status have more 

opportunity to learn than students of lower socioeconomic status.125 Assuming 

this trend also exists in science education, bioethics education—when 

integrated into science classes—might exacerbate these inequities. Professional 

development for teachers of all subjects at all levels can be designed to 

anticipate and confront these dynamics so that student opportunities for 

engagement are more justly distributed. Fair distribution of these types of 

educational opportunities is especially important because evidence indicates 

that education in civic engagement might also promote student achievement in 

other areas, including attainment of higher levels of education.126

Multiple efforts have been made to implement bioethics education at the 

high school level in the United States. In 1990, The Hastings Center, 

the New Jersey Science Education Leadership Association (then the New 

Jersey Science Supervisors Association), and Roche Pharmaceuticals (then 

Hoffman-La Roche) published a teaching resource to help high school 

science teachers in New Jersey incorporate bioethics concepts into their 

classrooms.127 The resource contained case studies, lesson plans, and teaching 

strategies on such topics as genetics and environmental responsibility.128 In 

the Northern Valley Regional High School District in Bergen County, New 

Jersey, project leaders provided a 3-day in-service program to train teachers 

on using the supplement.129 More recently, the Kennedy Institute of Ethics 

at Georgetown University developed a high school bioethics curriculum to 

equip teachers with classroom materials that can be integrated into existing 

curricula.130 The National Institutes of Health Exploring Bioethics curricular 

supplement provides science teachers with six classroom modules and learning 

activities that address bioethics considerations associated with specific topics, 

ranging from “Balancing Individual and Community Claims: Establishing 

State Vaccination Policies” to “Modifying the Natural World: Human 

Responsibilities Toward Animals.”131

In programs like these, teacher training and support is essential. Teachers face 

multiple challenges when incorporating ethics into high school classrooms. 

By high school, students begin to individuate from their parents, developing 

their own values and perspectives. They develop curiosity about the world 
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Bioethics Education III

and morality. Teachers must be prepared to consider tough questions without 

offending parents or school administrators, control potentially heated 

classroom discussions, and provide tools to help students differentiate between 

facts, opinions, values, and ethical perspectives. Support for teachers through 

these programs has included professional development workshops, course 

materials to structure classroom discussions, and viable solutions to challenges 

related to teaching ethics.132

Structured deliberative activities, developed 

by Diana Hess, use deliberative methods 

to teach controversial topics—including 

bioethical concepts—in high school settings. 

These activities involve structured discussions 

that focus on specific, intentionally chosen 

problems with the students placed at the fore 

of the discussion rather than the teacher. 

Although consensus is not required at the end 

of these activities, they are structured to foster 

high-quality deliberation in which students 

engage each other’s views respectfully rather 

than amplify disagreement. Hess offers 

three specific activity models that can be 

effective in teaching deliberation involving 

controversial topics.

The first activity is the “Town Meeting Model.”133 Students assume the 

roles, interests, and beliefs of actors and stakeholders in a town meeting 

on a public policy discussion. Background material tailored for each role is 

studied in preparation for the meeting. During the meeting, students drive 

the discussion, and the teacher serves as moderator, calling on students and 

intervening infrequently to redirect the conversation or pose a pointed question 

to spark new insights. Led by the teacher, the students debrief after the activity, 

reflecting on what went well and what went poorly.134

The second activity is the “Seminar Model.”135 In this activity, discussion 

centers on a specific text. The purpose of limiting the discussion to one text is 

to develop a deeper understanding of the issues and arguments presented in the 

“[I]n terms of creating safe 

space for students to have 

these kinds of discussions, we 

first have to care about helping 

the teachers be prepared, 

and that’s not a trivial task 

because teacher preparation, 

as everybody knows, is very 

different across different 

places and they have a lot on 

their plates.”

Grady, C., Chief, Department of 

Bioethics, National Institutes of Health 

(NIH) Clinical Center; Senior Research 

Fellow, Kennedy Institute of Ethics, 

Georgetown University. (2015). Member 

Discussion, November 17. Retrieved 

March 23, 2016 from http://bioethics.

gov/node/5357.
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

text. In this text-based seminar, students must refer back to the text to provide 

evidence for their arguments. They must consider multiple perspectives and 

strive to present all arguments in their best light. The teacher poses questions 

to facilitate discussion and might raise and defend a minority viewpoint to 

avoid a premature consensus.136

The third activity is the “Public Issues Discussion Model.”137 In this activity, the 

teacher splits the class into smaller discussion groups to address controversial 

topics. Before the activity, students are taught about methods of effective and 

respectful discussion and must strive to implement them in the subsequent 

activity. The teacher mostly observes the discussions, assessing students on 

their ability to engage in reasoned and respectful discussion. Occasionally, 

the teacher might challenge the students’ analysis or invite a minority view to 

deepen the deliberations.138

These are promising models because they align “theory and practice, teaching 

for and with discussion.”139 That is, these activities impart knowledge and 

develop skills in high-quality discussion. In this way, these activities serve 

as mechanisms both for learning about specific concepts and as forums for 

developing skills for respectful democratic deliberation.

Postsecondary School

After high school, students’ environments change substantially. Many students 

are living away from home for the first time. College can expose students 

to individuals with many different backgrounds, values, and perspectives. 

After building a strong base of moral character and ethical reasoning skills 

in primary school and applying those skills to specific topics in secondary 

school, ethics education in college offers further opportunity to continue to 

apply and specify. In undergraduate education, students start to specialize their 

learning, choosing tracks and majors. Ethics education in college courses can 

start to teach students how to identify, confront, and resolve ethical dilemmas 

they will encounter as professionals. The college classroom environment, with 

greater diversity of peers and perspectives, will help students articulate their 

values and refine their ethics in relation to the broader world.

Bioethics education has been integrated across undergraduate curricula 

in different ways. For example, the Kennedy Institute of Ethics has 
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implemented several ethics education initiatives at Georgetown University 

that demonstrate the diverse opportunities for instructors to collaborate 

in developing interdisciplinary learning opportunities related to ethics.140

Through the Conversations in Bioethics series, students and classes study a 

bioethics topic during the fall semester. In the spring semester, speakers with 

relevant expertise or experience are invited to present to the entire student 

body, opening up campus-wide conversations. The institute has also pioneered 

Ethics Lab, where students from different majors grapple with ethics in a 

practical way by creating products to address complex problems with both 

scientific and ethical dimensions.141

Online teaching has also been used to increase access to bioethics education, 

presenting the opportunity to reach a large and diverse group of learners. 

The Kennedy Institute’s bioethics massive open online course (MOOC), 

Introduction to Bioethics, is open to students worldwide, and during 2015, 

included 5,000 participants.142 The cultural exposure that college can bring—

transporting students to different environments where they are confronted 

with diverse peers—can be magnified in the MOOC setting. On the Internet, 

an even more diverse set of backgrounds, attitudes, and beliefs exists. Students 

learning about ethics in the MOOC context learn how to conduct ethical 

decision making and articulate ethical beliefs in a broader context.

Team teaching is a commonly used instructional approach to ethics education 

at the postsecondary level.143 Mirroring the notion of dual competence, the 

goal of team teaching is to integrate different disciplines, for example ethics 

and law or ethics and public health, bringing them to bear on complex 

problems. Foresight and careful planning is needed to overcome obstacles that 

might make team-teaching difficult, including cost, administrative obstacles, 

and logistical challenges.144

Another edifying and engaging opportunity for college students to learn 

ethics is the extracurricular Intercollegiate Ethics Bowl, which celebrated 

its 20th year in 2016. Ethics Bowl teams comprise interested students with 

diverse backgrounds and majors and one or more faculty sponsors. Teams 

deliberate, reach consensus, and present their perspectives on cases with 

challenging ethical dimensions. The teams reason their way to an answer, 

present their responses to a panel of judges, and respond to follow-up questions 
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

that challenge their application of ethical reasoning to the case. Competing 

teams comment on one another’s presentations. After both teams complete 

this process, the judges evaluate the teams’ performance in four categories: 

intelligibility, depth, focus, and judgment. The Ethics Bowl provides unique 

educational benefits, helping students develop a framework for ethical 

reasoning and understanding about a broad range of issues. It also fosters an 

appreciation for “viewing from the inside other ethical positions besides those 

with which a person agrees.”145

Unlike classroom discussion, which tends to be instructor-driven and lacks 

direct engagement between students’ viewpoints, the Ethics Bowl requires 

students to deliberate within their teams and present a unified response 

despite likely disagreement among team members. The consensus-building 

aspect of the activity ensures that “[e]ither differences of opinion narrow 

with further discussion, or, if not, team members nonetheless develop a 

clearer understanding of each other’s positions.”146 The ability to listen to and 

appreciate the force of opposing viewpoints is integral to effective deliberation 

and ethical understanding of complex, controversial topics about which 

reasonable people can genuinely disagree.147 Although the activity covers a 

range of academic, professional, and personal subjects, bioethics topics are 

included as well.148 A national undergraduate Bioethics Bowl—following the 

same format as other Ethics Bowls but exclusively featuring cases and questions 

about bioethics topics—is held annually.149

The Intercollegiate Ethics Bowl requires teams to qualify for the highest levels 

of competition.150 Although this tiered structure restricts the number of teams 

that can compete for the championship, the educational impact of the Ethics 

Bowl is not limited to those at the highest competition levels. For example, 

the Illinois Institute of Technology’s Intercollegiate Ethics Bowl team—which 

has involved students from a variety of majors (e.g., architecture, business, and 

biomedical engineering)—is embedded in a student organization that hosts 

multiple campus events to engage students in conversations about ethics.151

Professional and Graduate School

Ethics education becomes even more applied and specific in professional 

and graduate school. In addition to concepts learned in a classroom setting, 

graduate students and professionals frequently need to address real-world 
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Bioethics Education III

problems. They need skills to identify and 

articulate the ethical dimensions of their work, 

to deliberate with colleagues and others, and to 

implement and evaluate solutions.

Professional training and development can—and 

sometimes does—introduce tailored curricula 

that explore ethics topics in context, situating 

ethical questions in settings that resemble those 

that professionals will encounter in research, 

medicine, engineering, or business. Applied and 

contextual learning experiences can be created 

for professionals with the goal of developing 

the critical reasoning skills and desired habits 

of mind that are reflective of dedicated and 

thoughtful experts and leaders.152

Professional degrees—including the sciences, 

medicine, nursing, public health, engineering, 

journalism, and business—often include ethics coursework as a requirement 

or option. A few medical schools incorporated the humanities and human 

values into their curricula as early as the 1960s, and more followed in the 

1970s as medical progress galvanized public 

interest in ethical questions.153 A 2004 

survey revealed that 78% of medical schools 

integrated ethics into preclinical courses.154

Case-based discussion is the most common 

pedagogical approach to medical ethics 

education and is often combined with other 

approaches, including team teaching, smallgroup article discussions, reflective writing 

media presentations, and role-playing.155

Bioethics education programs are crucial, 

albeit not always required, in public health 

and nursing training. Although public 

health professionals report facing ethical 

challenges, only half of accredited schools 

“Anecdotally what I have seen 

is an incredible hunger for 

[communications training] 

among the generation of 

scientists that are coming 

up through the system now. 

At the Graduate Program in 

Science Writing—that has 

always been for journalists—

there has been an enormous 

uptick in science Ph.D. 

students who want to 

enroll in that program 

simultaneously....”

Mnookin, S., Associate Director, 

MIT Graduate Program in Science 

Writing. (2015). Fluency in Science 

and Ethics. Presentation to the 

Bioethics Commission, September 

2. Retrieved March 24, 2016 from 

http://bioethics.gov/node/5266.

“The first goal [of bioethics 

education in nursing] is to 

stimulate students to critically 

reflect upon and question the 

values, beliefs, and assumptions 

that they bring to clinical 

practice in an atmosphere that 

supports and respects diversity 

of intellectual thought, cultural 

paradigms, and respect for 

persons.”

Ulrich, C., Associate Professor of Bioethics 

in Nursing, University of Pennsylvania 

School of Nursing. (2015). Goals of and 

Approaches to Bioethics Education. 

Presentation to the Bioethics Commission, 

May 27. Retrieved March 24, 2016 from 

http://bioethics.gov/node/4945.
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

of public health require any ethics courses.156 A survey of practicing nurses 

indicated that, without such training, nurses are less likely to take action or 

seek assistance with an ethical problem and are more vulnerable to moral 

distress—distress arising from the tension between what is being done and 

what one thinks should be done.157

Advanced training in the natural sciences, including in biomedical research, 

typically includes some ethics education through responsible conduct of 

research training. However, such training has been perceived to emphasize 

regulatory compliance over scientists’ abilities to reflect on and contend with 

the ethical and social challenges arising in their work.158 Enabling scientists 

to explore the ethical and social implications of their work is an important, 

yet frequently overlooked, responsibility for institutions of higher education 

in the United States.159 Expanded curricula should address dynamics that the 

Bioethics Commission has focused on in previous reports, for example, the 

hype that often accompanies research results.160

Mentoring of professional students is an important mechanism for 

communicating the norms, expectations, and obligations of a profession. Many 

assume that most character formation is complete by the time students reach 

graduate school. However, graduate and career training inevitably involve 

acculturation to the dominant professional norms. Professional schools should 

attend to fostering professional virtues such as trustworthiness and compassion 

and try to counter institutional environments that erode students’ ideals.161

Evidence suggests that mentoring can influence students toward or away from 

unethical practices.162 To foster virtue and counter negative influences, certain 

approaches emphasize that graduate-level ethics education must bridge theory 

and practice, connecting professionalism to identity formation.163 Given its 

relation to identity, ongoing ethics education involves expanding on earlier 

moral lessons, drawing on exemplars and insights from both inside and outside 

the classroom (Figure 4).

Adult Bioethics Education in Public and Private Life

Bioethics education continues beyond formal education and professional 

training. A broad base in ethics education provides a solid foundation on which 

to build abilities for engaging with life’s ethical dimensions in postsecondary 

school, including highly contextual ethical concerns in the professions. 
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Bioethics Education III

In addition, ethics education throughout life prepares individuals to address 

ethical choices in their lives both as private individuals and as members of 

their communities. Most of us have or will confront bioethical questions 

about what we should do in the face of difficult health-related decisions for 

ourselves or our loved ones. As our population ages, questions about living and 

dying well will become more than hypothetical. As members of communities, 

PROFESSIONAL AND GRADUATE SCHOOL

Applying to situations encountered in the 

profession 

Example: Identify and articulate ethical 

dimensions of field-specific problems,

develop solutions 

POSTSECONDARY SCHOOL

Enhancing skills to confront and resolve ethical dilemmas 

in specific fields 

Example: Refine ethical arguments using relevant texts, 

draw from examples in given field of study, develop ethics 

decision-making skills 

SECONDARY SCHOOL

Developing character and moral identity 

Example: Develop personal views on ethical issues raised in class, 

discuss and defend those views with peers 

PRIMARY SCHOOL

Forming the foundations of moral development, simple maxims 

Example: Learn simple lessons about sharing, non-violence, etc. through 

age-appropriate examples 

FIGURE 4

ETHICS EDUCATION ACROSS THE LIFESPAN

Ethics education starts with a broad foundation in primary school, cultivating character and moral reasoning. As students 

get older, ethics education builds on the foundation, becoming more specific and tailored to students’ career trajectories, 

professional lives, and community membership.
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

we are often called upon to help make decisions about the public good and 

allocation of limited resources. We participate in public decision making about 

bioethics and health policies in various ways—when we vote, pay taxes, write 

or email public officials, and attend public meetings. Even for adults who do 

not continue their education past secondary or postsecondary levels, ethics 

literacy and an understanding of values and moral reasoning are necessary 

both for private and public ethical decision making.

One public effort in bioethics education implemented in Australia, the 

European Union, and North America is the death café, a community-based 

forum intended to help individuals understand their preferences and options 

at the end of life and overcome reluctance to think about or discuss death.164

In addition to real-time gatherings such as death cafés, other materials are 

available for free online to help adults make bioethical decisions. The Bioethics 

Commission’s educational materials include a set of primers for the public. 

These “Conversation Series” materials provide patients, research participants, 

and consumers with a guide to incidental findings, the focus of the 2013 

report, Anticipate and Communicate: Ethical Management of Incidental and 

Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts. 

These guides help individuals understand 

key ethical considerations related to 

incidental findings and clinical, research, 

and direct-to-consumer testing. For patients 

and participants, they help determine what 

questions should be asked during a visit with 

a clinician or to the research team to prepare 

for the findings.

Throughout adulthood, an individual 

has many opportunities to engage with 

and learn about bioethics topics. Local 

universities and community colleges offer 

lifelong learning and continuing education 

opportunities. Short courses often address 

such topics as surveys of ethics and law 

in medicine and aging with dignity. 

Community organizations and churches 

“[A] lot of [ethics education], 

I think, is getting at the kind of 

subtle, nuanced, rich language 

that is ethical language because 

it helps you to interpret what 

you’re seeing and that helps set 

the stage for how to think about 

it. So an example might be...the 

difference between discrimination 

and subordination. That’s powerful 

to people because it lets them 

name a reality that they might not 

otherwise have words for.”

Little, M., Director, Kennedy Institute 

of Ethics; Professor of Philosophy, 

Georgetown University. (2015). Goals of 

and Approaches to Bioethics Education. 

Presentation to the Bioethics Commission, 

May 27. Retrieved March 24, 2016 from 

http://bioethics.gov/node/4945.
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Bioethics Education III

also host classes, talks, and discussions engaging different topics such as 

ethics and religious teachings; pressing issues in current events; surveys of 

world religions; and ethical implications of advances in health, science, and 

technology. Adult learning opportunities provide for ongoing engagement 

with, and sometimes new exposure to, moral traditions and communities. 

In addition, these forms of learning offer much-needed guided exposure to 

the constantly changing technologic landscape of modern society, and such 

learning opportunities frequently attend to adults’ shifting needs and interests 

through all of life’s stages.

Advocacy organizations focused on specific conditions also can serve as an 

educational resource for ethical concerns that arise among affected individuals. 

For example, the Alzheimer’s Association provides educational information 

for surrogate decision makers to help them make choices for those with the 

disease regarding research participation.165 The Alzheimer’s Association also 

has created a list of resources for individuals with dementia and their families 

addressing rapidly changing scientific advances and ethical complexities 

surrounding Alzheimer’s disease and dementia.166

A 2000 AARP survey indicated that keeping up with “what’s going on in the 

world” and seeking “spiritual or personal growth” were top motivations for 

interest in learning among adults age 50 years and over.167 Especially relevant 

to ethics education, respondents also cited desires to help, understand, and 

get along better with others.168 Importantly, a large portion of surveyed adults 

also indicated they had experienced a personal illness, the illness or death 

of a family member, or becoming a caregiver for an older family member 

during the previous year.169 These findings provide evidence that encouraging 

bioethics education for adult learners can be especially important.

Obstacles and Potential Solutions

Integrating ethics into education at all levels is a promising model for 

increasing ethics literacy and teaching students how to examine the subjects 

they are studying through the lens of ethics.170 Yet teachers might be reluctant 

to introduce ethical considerations into the classroom. This reluctance can 

pose serious challenges to integrating ethics education into existing educational 

structures, but these challenges can be overcome. This section describes some 
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

of those obstacles that lead to reluctance, which can include lack of training, 

concern from parents or administrators about indoctrination, and logistical 

and practical challenges. It then provides some methods for addressing and 

attenuating these obstacles.

The first and perhaps most substantial obstacle is lack of teacher training or 

preparation. Teachers might think that teaching or leading a discussion on 

an ethics topic requires expertise that they lack, or they might believe that 

teaching the ethical aspects of a subject like science is not their responsibility 

and should be reserved for a class dedicated to bioethics.171 Training materials 

and guides have been developed to help teachers understand and prepare for 

teaching ethics topics as part of their existing curricula. 

Training and support can address teachers’ concerns that they will lose control 

of their classrooms if challenging or controversial ethics topics arise. The 

increasingly polarized political and social climate makes many topics with 

ethical dimensions seem untouchable. Teachers are worried that classroom 

discussions will become disorderly.

Some scholars argue that, instead of abandoning political discussion and 

deliberative democracy because of polarization, we must instead embrace 

it.172 Discussions with other teachers and experts about strategies and 

pedagogical techniques can help teachers develop skills in managing and 

promoting discussions of ethical issues in their classrooms. For example, the 

Northwest Association for Biomedical Research, a body that promotes public 

understanding of biomedical research and its ethical conduct, has developed 

resources for training and supporting teachers when integrating ethics topics 

into science classrooms.173 These resources, available on their website, include 

curricula that describe relevant scientific and ethical issues on specific topics 

(e.g., human immunodeficiency virus vaccines) and an Ethics Primer, which 

describes ethical theories, decision-making frameworks, and classroom 

strategies.174 Teachers can also participate in annual workshops designed for 

practicing strategies outlined in the primer and developing lesson plans and 

case studies.175

Another resource for teachers is the free online National Institutes of Health 

bioethics curriculum material. Exploring Bioethics, mentioned previously, is a 

curricular supplement for biology classes in grades 9–12 created to provide 
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Bioethics Education III

an opportunity for students to address complex bioethics topics and develop 

critical thinking and problem-solving skills. These teaching materials include 

information for instructors about handling common challenges in teaching 

bioethics which is useful at all educational levels.176

Ethics education initiatives should be developed and implemented in 

accordance with the best available evidence about what works, making ongoing 

research and evaluation essential for success. Research and evaluation can take 

different forms, from surveys conducted by the teacher to large independent 

studies. Teachers should set goals for what each class or program is attempting 

to achieve so that they can more easily assess their success. Evidence gathered 

can then be used to design more effective future classes. For example, the 

Romanell Report on medical ethics education, released in 2015, identified ways 

of evaluating ethics education, including self-assessment, reflective practice, 

evaluation in changes of attitudes, performance portfolios, examinations that 

assess knowledge, clinical evaluation exercises, objective structured clinical 

examinations, and small-group discussions with feedback.177 Directors of 

ethics courses in medical schools also have used different methods for assessing 

medical students’ ethical learning, including class participation, examinations, 

papers, case analyses, behaviors, and journals.178

Robust evaluation often requires attention 

to both short- and long-term outcomes.179

Immediate pre- and post-intervention 

surveys and assessments are a common 

way of evaluating a particular teaching 

method, an assignment, grasp of student 

material or attainment of a skill set, as 

well as the overall influence of a course. 

Other types of research focused on longterm outcomes include periodic follow-up 

surveys or interviews. Comprehensive 

prog r a m s — r at her t h a n te a c h i n g 

approaches or individual courses—can 

use measures such as enrollment in 

a particular major or attendance at 

conferences to assess interest.180

“[Evaluation] can really help give us 

feedback about what we’re doing 

well and maybe to help us tweak 

our goals and make sure that we’re 

meeting them.... [I]t can also, 

then, provide accountability to our 

stakeholders, to ourselves—to see 

if we are meeting our goals—and to 

our constituencies, our funders, our 

participants.”

Ripple, C. Associate Director for Education 

Research and Engagement, Duke University 

Social Science Research Institute. (2015). 

Fostering and Measuring Success in Ethics 

and Deliberation. Presentation to the Bioethics 

Commission, September 2. Retrieved January 

22, 2016 from http://bioethics.gov/node/5268.
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

A second obstacle to infusing ethics across the curriculum is resistance from 

administrators or parents, some of whom believe that ethics is subjective, that 

younger students are incapable of high-level reasoning or deliberation, or that 

ethics education imposes particular values on students—values that might not 

match their own.181 On the contrary, ethics education teaches students how

to think, not what to think. It involves helping students understand different 

perspectives and schools of thought and to develop analytic and respectful 

deliberative skills that help them avoid an uncritical acceptance of values. 

One purpose of ethics education is to encourage students to understand their 

own views, recognizing that a classroom discussion might be the first time 

that they think carefully and critically about a particular topic.182 Moreover, 

discussion of an ethical question might expose students to a broader range of 

views and values than they have previously encountered, helping them consider 

the matter from a new perspective.

“Another problem is that the public often doesn’t want students to hear points of view that 

are different than their own. Parents, in particular, sometimes believe that it’s important 

that schools...perfectly reflect the values in the home. And I think what we need to do, 

more than anything, is communicate to the parents in a very kind and pedagogical way, 

that that is not something that they should want in schools. That what parents should want 

from schools, what we should all want from schools, is for schools to help young people 

deliberate about these important issues with people who are different from they are, and 

hearing views that are different from what they hear at home. Because if we don’t do that, 

we are never going to get beyond what we see right now, which is, unfortunately, people 

kind of marinating in their own ideological stew.”

Hess, D.E. Professor of Curriculum and Instruction, University of Wisconsin-Madison; Senior Vice President, 

Spencer Foundation. (2014). Deliberation and Bioethics Education: Overview. Presentation to the Bioethics 

Commission, November 6. Retrieved March 24, 2016 from http://bioethics.gov/node/4321.

To facilitate this reflective process, ethics education should occur in an 

inclusive environment that encourages open and honest discussion.183 Teachers 

must be trained to facilitate these types of discussions, whether or not they 

teach a dedicated ethics lesson, because conversations among students about 

differing values are inevitable.

The notion of creating conditions for inclusive discussion should be 

distinguished from current discourse around creating a safe space, which first 

emerged to describe an enclave for students trying to avoid racism and sexism. 

It is now often used to eliminate possible exposure to ideas that might bring 
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emotional discomfort.184 However, attempting to shield students from ideas 

or topics that make them uncomfortable can impede the exploratory thinking 

needed for ethics education and development of deliberative skills needed for 

democratic citizenship.185 Rather than excluding these topics from classrooms, 

teachers should carefully prepare and strategize to introduce these topics in a 

manner that is tailored for their students’ ages, sensitive to diverse cultures and 

groups, and fair to participants and their views.186

The logistics of implementing new programs into existing, often crowded 

curricula can present a third obstacle.187 Trying to adhere to national 

standards such as the Common Core can add to the difficulty.188 In certain 

cases, however, ethics discussions, readings, or case studies—particularly cases 

from bioethics—can fit into current standards and requirements. Moreover, 

they can enhance the goals that those standards are meant to achieve. For 

example, the Common Core State Standards emphasize reason-giving—a key 

skill for democratic deliberation that entails presenting a claim, distinguishing 

it from opposing claims, and giving reasons and evidence to defend it. This 

skill manifests in writing requirements for grades 9–12 in which students are 

expected to construct reasoned arguments by using sufficient evidence. Even 

students as early as grade 6 develop speaking and listening skills by drawing 

on facts and details when presenting their claims. Analysis and discussion of 

an ethical dilemma provides an opportunity for students to become familiar 

with conceptual and substantial aspects of ethical concerns while fulfilling 

Common Core skill-building requirements.

Next Generation Science Standards also require that students learn about 

the nature of science, technology, society, and the environment and the 

relationships among them.189 This requirement could be met by considering the 

ethical and social implications of emerging technologies (e.g., synthetic biology 

or whole genome sequencing) or developments in neuroscience. Understanding 

how bioethics topics relate to national curriculum standards in these ways can 

help teachers and administrators think of ethics and bioethics not as additional 

subjects that they do not have time to teach, but instead as skill-building topics 

that can be woven into existing curricula.

A fourth obstacle, most common in the university setting, especially in graduate 

and postgraduate education, is an incentive structure that discourages faculty 

from adding ethics to their formal teaching and informal mentoring of students 
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

and burgeoning professionals. Cross-disciplinary engagement is often tacitly 

discouraged simply because such structures as tenure-track hiring and grants 

incentivize razor-sharp focus on a researcher’s chosen topic. Siloed funding can 

disincentivize incorporation of ethics topics and can act as a barrier to seeking 

perspectives of other disciplines to help solve ethical dilemmas. Also, programs 

can be siloed and isolated such that engaging experts from other disciplines 

(e.g., ethics) is nearly impossible.190

As the Bioethics Commission explained in its report, Gray Matters: Integrative 

Approaches for Neuroscience, Ethics, and Society, overcoming these disincentives 

requires pushing back against them.191 Universities must secure enough 

funding and resources to access ethics expertise and convey the importance 

of and concepts of ethical reasoning to their students and young professionals. 

If ethics education stops at the undergraduate level, professionals will not 

have the tools they need to confront ethical challenges specific to their fields. 

Developing ethics skills in students and faculty requires universities to be 

supportive of the goals of ethics education throughout a student's lifespan and 

career development.

Mutual Reinforcement of Deliberation and Ethics Education

Ethics education, through its focus on engagement with values and analytical 

reasoning, prepares members of communities to engage with and deliberate 

about morally complex bioethical questions arising in science and technology. 

In turn, deliberative practices are educational, leading to a more informed 

and participatory public. These mutually reinforcing functions create a 

virtuous circle, reflecting the ways in which ethics education and democratic 

deliberation are linked. Learning to recognize, articulate, and resolve the 

different ethical challenges we encounter as individuals will foster the skills 

necessary for deliberating with others about contentious civic concerns we face 

in our increasingly pluralistic society. In other words, education is crucially 

important for democratic citizenship.192 Deliberation can be used as a tool to 

develop more informed and educated students, professionals, communities, 

and leaders who can constructively contribute to conversations about morally 

complex topics—including bioethical ones. The mutual reinforcement of 

deliberation and ethics education promotes values essential to an engaged and 

civic-minded population.
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“The expert physicist does not 

necessarily bring the habits and 

scruples of the scientist into 

assessing the policy proposals of 

candidates for political office. And 

so we cannot expect that once 

our students are well-educated in 

the basic sciences within school 

they will bring scientific know-how 

and passion to their deliberation 

as citizens outside the institution. 

We need a curriculum for schools 

in which a substantial part of the 

curriculum brings established 

academic disciplines directly to bear 

on the pressing questions of public 

policy whose resolution will shape 

the future of our democracy.”

Source: Callan, E., Pigott Family School of 

Education Professor, Stanford University. 

(2015, June 4). Comments submitted to the 

Presidential Commission for the Study of 

Bioethical Issues, p. 2.

Two of the pedagogical approaches 

described previously demonstrate the 

synergy between democratic deliberation 

and bioethics education. First, the 

Intercollegiate Ethics Bowl teaches 

college students how to engage in ethical 

reasoning by deliberating in teams about 

specific cases, including bioethics topics. 

The Ethics Bowl challenges the traditional 

pedagogical approaches and requires 

students to engage with the topic and 

deliberate together, each bringing her 

own values and ethical reasoning skills 

to bear. It raises the stakes by using 

team competition, engaging students 

in active learning. Second, the high 

school deliberative classroom activities 

described by Diana Hess, including town 

hall meetings, text-based seminars, and 

discussion groups, teach students topical 

content and the related ethical issues, as 

well as skills in articulation and discussion of challenging topics. Activities like 

these that bring deliberation to life in the classroom demonstrate their value as 

an educational tool, especially for teaching ethics and bioethics.

Recommendations

Ethics education is important throughout life and can help prepare us for 

addressing ethical and bioethical issues that arise in everyday life and 

professional settings. These issues include questions for which no clear right 

or wrong answer exists, but that require careful consideration and reflection. 

Such problems include what medical decisions to make—and how best 

to make them—on behalf of a loved one who is incapacitated, and how to 

understand the potential social implications of research findings. Many of us 

also participate as members of private and public associations in our workplace; 

our local, state, and national governments; and voluntary associations where we 

encounter broad bioethics topics about which we have concern and over which 
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

we might have influence. Education throughout the lifespan that cultivates 

ethical reasoning and development of moral character can help individuals 

better meet these challenges in their own lives and in their relationships, and 

participate in decisions that affect them. Although schools play a key role in 

developing the values and analytical skills that contribute to an informed 

population, ethics education is not emphasized in the United States as part 

of standard curricula. However, great potential exists for incorporation of 

discussions of ethics into classrooms to develop these skills. Teachers and 

schools should make use of such educational materials as those developed by 

the Bioethics Commission and others.

Recommendation 4: Implement Foundational Broad-Based Ethics 

Education at all Levels

Educators at all levels, from preschool to postsecondary and professional 

schools, should integrate ethics education across the curriculum to prepare 

students for engaging with morally complex questions in a diverse range of 

subjects. Ethics education should include attention to both the development 

of moral character and virtue as well as the cultivation of ethical reasoning 

and decision-making skills that can be deployed in a bioethics context. 

Methods of ethics education should be evidence-based and grounded in 

best practices.

Development of ethical reasoning skills begins early in childhood, as previously 

discussed. Questions and case studies with a bioethical component can be an 

important element of this early education. For example, elementary school 

students might be asked to think about what questions they would have if they 

were invited to participate in research. Older elementary school students might 

be asked to compare theories arrived at by science versus those arrived at by 

other methods, or to reason through the concept of neurobiologic determinism 

by answering such discussion questions as, “Are our futures and fates fixed? 

Does what we do today have any effect on what happens in the future?”193

Ethics education builds critical thinking and argumentation skills, develops 

character, and emphasizes the importance of virtue. Those who develop 

curricula should draw from the empirical evidence about moral development 

to scaffold questions and topics that are tailored for students’ level of thinking 

at different ages.194
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Continuing ethics education into secondary school builds on the foundation 

of character and virtue developed in primary school. In secondary school, 

students can learn higher order ethical concepts as they relate to their 

coursework. Programs aimed at training teachers how to introduce bioethics 

into their classrooms can help ensure teachers have the knowledge and skills 

to facilitate student engagement.195 Later, at the university level, as moral 

development continues to evolve and students begin to specialize, ethics 

education should also begin to specialize. In undergraduate education, 

the foundations of character development, decision making, and analytic 

reasoning skills should be applied to the specific concepts that students are 

exploring in their coursework.

As programs in ethics education are developed across the lifespan and in 

diverse settings, creators of these programs should ensure that they are designed 

in accordance with best evidence and practices. The goals and purposes of each 

program should be clearly stated, and programs should be evaluated to ensure 

that they are meeting those goals. Just as schools use evidence amassed over 

decades about what methods work to teach other topics, so should they design 

ethics curricula components in accordance with evidence about what works. 

An effective education in ethical character and reasoning serves everyone 

well—as current and future patients, caregivers, and community members, all 

of whom are affected by new developments in science, health, and technology. 

The importance of ethics education makes evaluating the conditions that lead 

to successes and failures in building bioethics skills and virtues essential. Such 

evaluations will then enable building on what is learned to continue improving 

ethics education.

e

All individuals should have an opportunity to participate in ethics education 

to prepare them for the inevitable bioethical decisions they will face. Specific 

bioethical knowledge and skills should be taught to professionals. In six of 

its past nine reports, the Bioethics Commission has recommended bioethics 

training for professionals in fields ranging across medicine, basic science, public 

health, engineering, and law. This recommendation builds on the Bioethics 

Commission’s past work by urging educators and trainers in these fields to 

develop continuing bioethics education.
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

Bioethical challenges within specific 

professions present questions for which 

a general ethics education is insufficient. 

Certain obligations, duties, and virtues are 

embedded in each profession and social 

role, and incorporating these into bioethics 

analyses is important.196 For example, in its 

2013 report, Anticipate and Communicate: 

Ethical Management of Incidental and 

Secondary Findings in the Clinical, Research, 

and Direct-to-Consumer Contexts, the 

Bioethics Commission analyzed the different 

roles that clinicians, researchers, and direct-toconsumer professionals play in our society and 

in relation to the patients, participants, and 

consumers with whom they interact. Thus, 

rather than making broad recommendations 

about what any practitioner should do when 

they discover an incidental finding, the 

Bioethics Commission made separate recommendations based on the different 

roles and ethical duties of these professionals in each context.197

Additionally, in its 2010 report, New Directions: The Ethics of Synthetic Biology 

and Emerging Technologies, the Bioethics Commission recommended that, 

because synthetic biology crosses multiple disciplines, bioethics education 

and training should be developed in relevant fields, including engineering 

and materials science.198 Professional ethics seeks to identify and guide 

professionals’ actions on the basis of the moral foundations of their chosen 

careers, and these actions often need to be explicitly taught. Graduate programs 

in such professions as nursing and public health ought to help students develop 

the confidence, reasoning skills, and moral resources they will need to address 

the distinct ethical considerations of their professional work. Importantly, 

some graduate programs including laboratory science and public health have 

independently documented a need to develop critical reasoning skills and 

moral sensitivity.199

“I think that the same drive for 

accountability should animate a 

Bioethics Commission’s thinking 

and practice with respect to...

active participation by citizens. 

There are...two aspects to this 

dimension: Public education, the 

focused effort to lead citizens 

to an informed understanding 

of some usually rather complex 

issue in biomedicine, an effort 

that might utilize any number of 

educational methods, and the 

direct engagement of an informed 

citizenry in deliberations as a 

Commission.”

Davis, F.D., Director of Bioethics, Geisinger 

Health System. (2015). Democratic 

Deliberation in Bioethics. Presentation 

to the Bioethics Commission, May 27. 

Retrieved March 25, 2016 from http://

bioethics.gov/node/4943.
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Recommendation 5: Develop Bioethics Education and Training for 

Professionals

Educators at the graduate and professional levels, including in the health care, 

public health, engineering, and legal fields, should develop, integrate, and 

emphasize bioethics education to foster continued character development, 

cultivate a culture of responsibility, and teach the specific skills and bioethical 

reasoning applicable to the profession.

Administrators and teachers in a wide array of professional fields—

including health care, the biosciences, engineering, business, and law—can 

choose from various options to ensure that their graduates are prepared to 

recognize and address bioethical issues that arise in their profession. The 

Bioethics Commission’s 2014 report, Gray Matters: Integrative Approaches for 

Neuroscience, Ethics, and Society, described several methods for integrating 

bioethics into the neuroscience research enterprise. These approaches are 

not limited to neuroscience, nor necessarily to scientific research. All of the 

approaches described have an educational component. For example, ethics 

mentoring programs, collaboration with experts on ethics review boards, and 

benchside ethics consultation services are some of the ways to incorporate 

innovative methods for educating professionals who encounter bioethical 

challenges.200 Graduate-level training for professionals and students training 

in those professions—such as master’s degree programs in bioethics or health 

care ethics—can create a cadre of individuals with dual competence in both 

their field and in ethics. Integrating bioethics into existing professional school 

curricula also can help develop the necessary skills for ethically competent 

professionals. These programs could add a bioethics component to each 

course, have students engage in a separate course that uses a bioethics lens 

to reflect on a topic, or both. These bioethical elements should be tailored to 

the specific careers that students are entering and to the kinds of bioethical 

issues that they are likely to encounter as professionals. For example, in law 

school, courses that help prepare future attorneys to confront cases involving 

health care, science, and technology should include a bioethics component 

for when questions of ethics, not simply law, arise. Competency in bioethics 

should continue to develop even after graduation—professionals and trainees 

at all levels can cultivate their ethical competency though formal and informal 

mentoring programs.
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e

Ethics education at all levels is essential for preparing current and future 

community members to engage in conversations about challenging and 

controversial topics. However, introducing ethics and potentially controversial 

bioethical questions into the classroom can present pedagogical challenges 

for educators. As described previously, teachers might be concerned that 

conversations will spiral out of control or that parents, other teachers, or 

school administrators will object.201 Teachers in science fields rarely receive 

training in ethics or in leading discussions and therefore might feel unprepared 

to implement bioethics curricula.202 Moreover, many professional incentive 

structures can discourage incorporating ethics into scientific training.203

Educators need support and professional development that prepares them 

to overcome these obstacles to implementing bioethics education and that 

rewards them for doing so. Training in ethics and techniques for conducting 

deliberative discussions in the classroom can help teachers overcome their 

own and others’ hesitancy to engage in bioethics education. Training also 

can prepare teachers for addressing administrators’ and parents’ concerns that 

ethics education seeks to indoctrinate students.

Recommendation 6: Support Opportunities for Teacher Training in 

Bioethics Education

Education policymakers, teacher training programs, and other funders 

should support development of teacher training in ethics education to prepare 

teachers of all subjects to facilitate constructive bioethical conversations in 

their classrooms. Teacher training programs should anticipate existing 

educational inequities and provide teachers and students with equitable access 

to ethics education, with an aim of preparing all students for the bioethical 

questions that might arise during the course of their lives.

Training programs should prepare educators at all levels to conduct ethics 

education that provides students with skills and knowledge that will help 

them navigate through the bioethical decisions they will likely face. Teacher 

training programs can help direct bioethics education opportunities to be 

more inclusive. Training programs should be inclusive when considering 

which teachers are offered training and thus which students are offered ethics 
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education opportunities. They should also consider how to train teachers to 

think critically about which student contributions to conversation will be 

perceived as legitimate.204

Existing materials for teacher training or professional development programs 

in bioethics education are a principal resource. Previous training efforts have 

included workshops, texts that provide instructors with an overview of topics 

for discussion, teaching manuals, continuing support after initial training, and 

online resources.205

e

Ethics education, through its focus on analytical reasoning, prepares 

communities and their members to engage with and deliberate about 

morally complex bioethical questions in health, science, and technology. 

In turn, deliberative practices are educational, leading to a more informed 

and participatory public. These mutually reinforcing functions can create a 

virtuous circle, reflecting the ways in which ethics education and democratic 

deliberation are inextricably linked. Deliberation can be used as a tool to 

develop more informed and educated students, professionals, communities, 

and leaders. Deliberating about an array of morally complex topics—including 

bioethical ones—facilitates ethics learning and skill-building. The mutual 

reinforcement of deliberation and ethics education promotes values essential 

to an engaged and civic-minded population.

Recommendation 7: Foster Mutual Reinforcement of Deliberation and 

Ethics Education

Educators and organizers of deliberative activities should use the tools of 

deliberation and education to facilitate civic engagement about pressing 

bioethical concerns surrounding developments in health, science, and 

technology.

Many innovative ways exist to incorporate deliberation into bioethics 

education. We described several contemporary examples of deliberation 

enhancing education, including the Ethics Bowl and various deliberative 

classroom activities. Each of these methods should be implemented with a clear 

understanding of how they can help achieve educational goals. For example, 

educators hoping to teach their students about specific substantive topics, while 
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

honing their civic skills, might choose to 

incorporate deliberative activities into 

the classroom. Structured deliberative 

activities can help revitalize democratic 

deliberation in our politically polarized 

society. Deliberative activities are designed 

to teach “for and with discussion,” meaning 

that they not only teach a topic through 

discussion, they are also intended to foster 

high-quality discussion.206

Educators who hope to foster the 

deliberative skills of mutual understanding 

and respect for differing positions can 

adapt the format of the Ethics Bowl in 

which high school or undergraduate 

students participate in deliberations on 

diverse ethics and bioethics topics (e.g., 

raising the minimum wage or testing 

an unproven medical intervention on 

dying patients). Ethics Bowl teams must 

deliberate, anticipate, and incorporate 

different perspectives and present a unified 

response, which can yield educational 

benefits that a classroom discussion might 

have difficulty generating.207 Beyond helping students develop a framework 

for ethical reasoning and cultivating understanding of a broad range of topics, 

such activities can foster the critical deliberative skill of taking on the position 

of an individual with whom they disagree.208

e

Supporting public bioethics education and engaging in deliberation are 

important functions of bioethics advisory bodies. Bioethics commissions ought 

to serve as public forums by engaging, educating, listening, and responding 

to citizens.209 This Bioethics Commission has actively engaged in and helped 

to implement deliberative practices and bioethics education. It has made 

“[A] team’s challenge in preparing 

for the Ethics Bowl is to identify the 

key ethical issues raised by each 

case, and then work out positions 

on them that everyone on the 

team agrees are reasonable in the 

sense that a morally conscientious 

person could accept the position 

after careful consideration. And to 

reach this kind of agreement among 

themselves each team member has 

to be able to listen to the others with 

an open mind. The team members 

have to be able to consider seriously 

different views from their own 

and to appreciate their force, not 

in the sense of being persuaded 

necessarily, but in recognizing why 

a morally responsible person could 

hold that position or find them 

persuasive.”

Ladenson, R.F., Emeritus Faculty Associate, 

Center for the Study of Ethics in the 

Professions, Illinois Institute of Technology. 

(2015). Ethical and Deliberative Skills across 

the Lifespan. Presentation to the Bioethics 

Commission, September 2. Retrieved March 

25, 2016 from http://bioethics.gov/node/5267.
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direct contributions to bioethics education by developing teaching tools that 

are wide-ranging in scope and format and intended to be accessible to both 

educators and members of the public. These materials draw on research about 

effective education to ensure that all kinds of learners are able to access the 

work of the Bioethics Commission, and through that work, engage in some of 

the most challenging contemporary bioethics topics.

Recommendation 8: Encourage Future Bioethics Commissions to 

Further Their Deliberative and Educational Roles

Future bioethics commissions should continue to explore, reimagine, and 

reinvigorate the educational and democratic roles fulfilled and exemplified by 

such commissions. They also should encourage discourse and civic involvement 

in developing health, science, and technology policy. The work of bioethics 

commissions should be used as the foundation for creating educational tools 

tailored for different levels, from primary school through postgraduate and 

professional training, that enable teachers to introduce deliberation about 

contemporary and meaningful bioethics topics in their classrooms.

This Bioethics Commission has demonstrated its commitment to furthering 

ethics education at all levels by making recommendations calling for both 

broad public ethics education and specific professional ethics training, 

as well as developing bioethics educational materials that can be used in a 

broad range of settings by educators who want to incorporate bioethics into 

their classrooms. The Bioethics Commission has developed more than 60 

educational tools at the time of this printing, and is continuing to develop 

more, including case studies, deliberation exercises, modules on key bioethics 

topics, classroom discussion guides, videos, and webinars, all of which are 

available for free download on the Commission’s website. The materials can 

be used by teachers in high school, college, and graduate school classes; by 

professionals in the health sciences and technology fields, including clinicians, 

public health practitioners, and researchers; and by members of the public.

At our 23rd meeting in November 2015, the Bioethics Commission welcomed 

visitors from Rachel Fink’s biology class at Mount Holyoke College in South 

Hadley, Massachusetts. For more than a decade, she has engaged her students 

in deliberative activities to help them understand the societal, political, and 

ethical implications of the science they study in the classroom.210 At the 
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

November 2015 meeting, students observed Commission members as they 

engaged in deliberation and solicited comment from experts who came to 

present their views and recommendations. Students participated by submitting 

comments to the Commission as the members deliberated. Their participation 

in this public meeting is an apt illustration of the intersection of bioethics 

education and public deliberation and is an example of inspiring educational 

efforts that can build a more informed, engaged, and participatory democracy. 

Our work in public deliberation and bioethics education has built on the legacy 

of past bioethics commissions, and we encourage future bioethics commissions 

to continue in this tradition.

* * *

This discussion about ethics education has wider educational policy 

implications: the question of what subject matter schools should teach often 

obscures equally important questions about why schools should teach. Too 

often, education policy jumps to how questions, focusing on the content 

of education and assessment methods—what subjects should be taught 

and mastered and at what age? Although important, these questions are 

inextricably related to the questions of why students are being educated in 

the first place. Individuals, families, communities, and societies have different 

goals for education. Some want the education system to prepare students for 

an increasingly competitive work environment, whereas others want students 

to be trained in basic life skills. Others see education as an initial introduction 

to a lifetime of learning, or they envision education as developing individual 

talent and potential. Each of these goals is laudable in its own right and ought 

to underpin conversations about objectives of educational policy reforms. 

Ethics education, as an integral part of the educational landscape, offers an 

exploration of these broader goals.

By initiating and encouraging continued conversations about ethics education, 

the Bioethics Commission hopes to motivate broader reflection on educational 

policy by setting the question of values and their role in education, front and 

center. The Bioethics Commission’s analysis reveals that educational goals 

are not mutually exclusive, but often compatible and even complementary. 

By highlighting bioethics education, the Bioethics Commission’s analysis 

constitutes a call to all those with a stake in teaching and learning to consider 
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the worthwhile goal of fostering thoughtful discussion about our individual 

and collective values.

This section emphasized the importance of ethics education, from 

kindergarten through professional development and adult education, for 

promoting reasoned deliberation about bioethical issues. Moving forward 

with complex decisions that involve social and ethical dimensions of our lives 

and that involve deeply held values requires decision makers and the public 

alike to have a clear understanding of the factors and concerns involved. 

The only way for us, as a society, to arrive at informed and ethical decisions 

about important questions concerning advances in science, medicine, and 

technology is to understand these questions, including their ethical contours. 

Both education and democratic deliberation are necessary for society to make 

informed choices about scientific advances.
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology
89

Conclusion IV

CONCLUSION
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Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

Since its inception, this Bioethics Commission has been committed to the 

values embedded in democratic deliberation. We hope that this report 

informs, inspires, and guides future bioethics commissions. We have described 

our deliberative processes, outlining the key steps in the process of democratic 

deliberation, and recommended ways of incorporating and extending a 

deliberative approach to making recommendations and formulating advice 

on complex ethical challenges in health, science, and technology. As the 

tenure of this Bioethics Commission draws to a close, we hope that future 

commissions and advisory bodies at all levels will continue to invoke the 

values of democratic deliberation as they work to find ways forward on the 

most pressing bioethical questions that confront our society.

As this report goes to press, the national and international science communities 

are grappling with the ethical and societal implications of a promising new 

technology: clustered regularly interspaced short palindromic repeats, or 

CRISPR.211 CRISPR is a powerful and efficient technology that is being used 

by thousands of scientists to edit plant and animal DNA.212 Researchers hope 

to use CRISPR to alter human genes to cure and eliminate diseases.213 Many 

eminent scientists, ethicists, and members of the public have raised serious 

concerns about using CRISPR in humans, including potential consequences 

of an error in genetic engineering, use of the technology for bioterrorism, 

and unanticipated implications for future generations of altering even such 

seemingly harmless genes as eye color.214 Altering a human’s germline means 

altering the genome of all their descendants.215 Philosophers have previously 

raised concerns about potential implications of such alterations.216

The continued research and use of CRISPR technology is a topic well-suited 

for democratic deliberation. A host of complex questions concerning how we 

should use CRISPR technology are open for deliberation. What limits—if 

any—should we place on its use in humans? Deliberations about this topic 

should involve diverse stakeholders including scientists and clinicians, as well 

as ethicists, philosophers, and communities affected by diseases that CRISPR 

might cure. Deliberating about CRISPR now is of utmost importance 

because the technology is on the cusp of use in humans, including human 

embryos. A set of deliberative efforts that include stakeholders and members 

of the public and that foster open discussion and debate is best designed for 
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Conclusion IV

arriving at actionable decisions about what to do about CRISPR research 

and use.

The National Academy of Sciences (NAS) has initiated an effort to do just 

that. NAS is committed to examining both the scientific as well as the 

“clinical, ethical, legal, and social implications of human genome editing 

technologies,” (e.g., CRISPR).217 David Baltimore, chair of the NAS committee 

emphasized, “This is the way decisions get made in a democracy. We may not 

be representative of all America, but it is a beginning process and an ongoing 

process. It does establish a precedent for the handling of difficult issues that we 

can be proud of.”218 NAS held its first international summit in December 2015 

and will continue to deliberate, convening experts and members of the public, 

before releasing a final report by end of 2016 (Figure 5).

FIGURE 5: THE INTERNATIONAL SUMMIT ON HUMAN GENE EDITING

A major component of the National Academy of Sciences and the National Academy of Medicine's 

Human Gene-Editing Initiative is an international summit that took place December 1-3 in 

Washington, D.C. Co-hosted with the Chinese Academy of Sciences and the U.K.'s Royal Society, the 

summit convened experts from around the world to discuss the scientific, ethical, and governance 

issues associated with human gene-editing research. 

After these three days of thoughtful discussion, the organizing committee for the summit issued a 

statement on human gene-editing research and its potential applications, including uses that could 

alter the human germline. Read the statement, as well as a response from the presidents of the four 

summit co-hosts.

The National Academy of Sciences held an international summit on CRISPR in December of 2015. 

Source: http://nationalacademies.org/gene-editing/Gene-Edit-Summit/index.htm.
92

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

The deliberative process that NAS is using to guide policy on the emerging 

CRISPR technology is another excellent example of how policymakers and 

advisory bodies can and should approach complex problems in health policy 

and bioethics. The core values of democratic deliberation, including mutual 

respect and reason-giving, are ideally suited to finding ethical ways forward 

on pressing matters of common concern, respecting the diverse opinions of 

stakeholders and arriving at legitimate policy solutions.

* * *

For wise and legitimate decision making about bioethical concerns in a 

democracy, both experts and the public at large need to understand not only 

the science, but also attendant values and ethical dimensions. We also must 

develop skills that enable reasoned ethical argument. Ethics education is 

necessary for effective deliberation, and deliberation is an excellent tool for 

ethics education. Teaching communities how to participate in deliberation 

about real bioethics topics is an efficient and effective way to teach students 

about the ethical dimensions of health, science, and technology, enabling them 

to participate in the democratic process.

Bioethics permeates multiple facets of our public and private lives. This 

Bioethics Commission has tackled challenges that we all face as individuals, 

professionals, family members, and members of society in an increasingly 

interconnected world. These questions include, among others, whether 

and how to employ advancing technology, how researchers and health care 

providers should behave in certain situations, how governments should 

handle public health emergencies, and how individuals should incorporate 

their values when making decisions on behalf of loved ones. Taken together, 

these questions get to the heart of what it means to be a participant in our 

democracy and, in an even broader sense, a responsible citizen of the world. 

Tackling these questions requires careful and reasoned deliberation, as well 

as a comprehensive understanding of the values that each of us brings to the 

discussion. Democratic deliberation and ethics education complement one 

another, elevating the level of discourse about tough bioethical concerns and 

improving the way our society resolves morally complex challenges in science, 

technology, and health.
93

ENDNOTES
94

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

1 Gutmann, A. (1999). Democratic Education, with a new preface and epilogue. Princeton, NJ: Princeton 

University Press, pp. xi-xiv, 5-6.

2 Gutmann, A., supra note 1, p. 52, et passim.

3 Gutmann, A., and D. Thompson. (2004). Why Deliberative Democracy?. Princeton, NJ: Princeton University 

Press, p. 7.

4 Presidential Commission for the Study of Bioethical Issues (PCSBI). (2010, December). New Directions: 

The Ethics of Synthetic Biology and Emerging Technologies. Washington, DC: PCSBI, p 5.

5 Gutmann, A., and D. Thompson. (1997). Deliberating about bioethics. Hastings Center Report, 27(3), 38-41, 

p. 28.

6 Thompson, D., Alfred North Whitehead Professor of Political Philosophy, Faculty of Arts and Sciences, 

Professor of Public Policy, John F. Kennedy School of Government, Harvard University (Emeritus). (2015). 

Facilitating Public Dialogue About Bioethics. Presentation to the Presidential Commission for the Study of 

Bioethical Issues, September 2. Retrieved March 25, 2016 from http://bioethics.gov/node/5265.

7 Knobloch, K.R., et al. (2014). Empowering citizen deliberation in direct democratic elections: A field study of 

the 2012 Oregon Citizens’ Initiative Review. Field Actions Science Reports, 11, 1-10; De Vries, R., et al. (2010). 

Assessing the quality of democratic deliberation: A case study of public deliberation on the ethics of surrogate 

consent for research. Social Science and Medicine, 70(12), 1896-1903.

8 Primary Ethics. (2015). K-6 Curriculum [Curriculum Framework]. Retrieved March 25, 2016 from http://

www.primaryethics.com.au/K-6curriculum.html.

9 Knight, S., Curriculum Author, Primary Ethics Limited, Australia. (2015). Ethical and Deliberative Skills 

Across the Lifespan. Presentation to the Presidential Commission for the Study of Bioethical Issues, September 

2. Retrieved March 25, 2016 from http://bioethics.gov/node/5267.

10 Lee, L.M., Wright, B., and S. Semaan. (2013). Expected ethical competencies of public health professionals and 

graduate curricula in accredited schools of public health in North America. American Journal of Public Health, 

103(5), 938-942; Ulrich, C., Associate Professor of Bioethics in Nursing, University of Pennsylvania School of 

Nursing. (2015). Goals of and Approaches to Bioethics Education. Presentation to the Presidential Commission 

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11 Gutmann, A., supra note 1, pp. 282-291, et passim.

12 Dzur, A.W., and D. Levin. (2004). The “nation’s conscience:” Assessing bioethics commissions as public forums. 

Kennedy Institute of Ethics Journal, 14(4), 333-360.

13 Dewey, J. (1916). The need of an industrial education in an industrial democracy. In J.A. Boydston (Ed.). 

(1980). John Dewey: The Middle Works, 1899-1924, Vol. 10, p. 139. London, UK: Southern Illinois University 

Press.

14 Safier, P. (2006). Rationing in Public: The Oregon Health Plan. In A. Gutmann and D. Thompson (Eds.). 

Ethics and Politics: Cases and Comments, Fourth Edition (pp. 332-357). Belmont, CA: Wadsworth.

15 Gutmann, A., supra note 1, pp. xi-xiv, 5-6.

16 Gutmann, A., supra note 15, p. 52, et passim.

17 Woopen, C., Executive Director, Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health. 

(2016). Introduction to the 11th Global Summit 2016, Berlin, Global Health – Global Ethics – Global Justice, 

March 17. Retrieved March 25, 2016 from https://www.globalsummit-berlin2016.de/documents-and-links/

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18 Gutmann, A., and D. Thompson, supra note 3, p. 7.

19 PCSBI, supra note 4, p 5.

20 Hess, D.E., and P. McAvoy. (2014). The Political Classroom: Evidence and Ethics in Democratic Education. New 

York, NY: Routledge, p. 5; Parker, W.C. (2003). Teaching Democracy: Unity and Diversity in Public Life. New 

York, NY: Teacher’s College Press.
ENDNOTES

95

21 Katsnelson, A. (2010, April 14). Freeing human eggs of mutant mitochondria. Nature. Retrieved March 

22, 2016 from http://www.nature.com/news/2010/100414/full/news.2010.180.html; Sciencewise. (2016). 

Mitochondria Donation [Webpage]. Retrieved March 22, 2016 from http://www.sciencewise-erc.org.uk/cms/

assets/Project-summaries/Mitochondria-donationproject-summary.pdf.

22 United Mitochondrial Disease Foundation (UMDF). (2015). What is Mitochondrial Disease?. Retrieved May 

2, 2016 from http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7934627/k.3711/What_is_Mitochondrial_

Disease.htm; Schaefer, A.M., et al. (2004). The epidemiology of mitochondrial disorders—past, present and 

future. Biochimica et Biophysica Acta, 1659(2-3), 115-120; Elliot, H.R., et al. (2008). Pathogenic mitochondrial 

DNA mutations are common in the general population. The American Journal of Human Genetics, 83(2), 

254-260.

23 Human Fertilisation and Embryology Authority (HFEA). (2012, January 19). HFEA to consult on ethics of 

‘mitochondria transfer’ [Press Release]. Retrieved March 22, 2016 from http://www.hfea.gov.uk/6898.html.

24 Ibid.

25 Sciencewise, (2013). Case Study. Mitochondria replacement: A major public dialogue to review the ethical, 

social and regulatory issues involved in mitochondria replacement and provide the main contribution to HFEA’s 

advice to Government. Retrieved March 22, 2016 from http://www.sciencewise-erc.org.uk/cms/assets/Uploads/

SciWiseMitochondria-CS05-04-14.pdf; Watermeyer R., and G. Rowe. (2013, July). Evaluation of the project: 

“Mitochondria Replacement Consultation.” Retrieved March 22, 2016 from http://www.hfea.gov.uk/docs/

Mitochondria_evaluation_FINAL_2013.pdf.

26 Human Fertilisation and Embryology Authority (HFEA). (2013, March). Mitochondria Replacement 

Consultation: Advice to Government, p. 4. Retrieved March 22, 2016 from http://www.hfea.gov.uk/docs/

Mitochondria_replacement_consultation_-_advice_for_Government.pdf.

27 Nuffield Council on Bioethics. (2015, 25 February). UK approves regulation on mitochondrial DNA 

donation [Press Release]. Retrieved March 22, 2016 from http://nuffieldbioethics.org/news/2015/

uk-approves-regulation-on-mitochondrial-dna-donation/.

28 Gutmann, A., and D. Thompson, supra note 3, pp. 22-23.

29 Gutmann, A., and D. Thompson. (2010). Deliberative Democracy. In R.A. Couto. (Ed.). Political and Civic 

Leadership: A Reference Handbook (pp. 325-332). Washington, DC: Sage Publications, Inc., p. 325; Gutmann, 

A., and D. Thompson, supra note 3, pp. 3, 139; Gutmann, A., and D. Thompson, supra note 5, 38-41, p. 38.

30 Gutmann, A. and D. Thompson, supra note 3, p. 139; Gutmann, A., and D. Thompson, supra note 29.

31 Goold, S.D., et al. (2005). Choosing Healthplans All Together: A deliberative exercise for allocating limited 

health care resources. Journal of Health Politics, Policy and Law, 30(4), 563-601.

32 Danis, M., Ginsburg, M.M., and Goold, S. (2010). Experience in the United States with public deliberation 

about health insurance benefits using the small group decision exercise, CHAT. The Journal of Ambulatory Care 

Management, 33(3), 205-214.

33 Gutmann, A., and D. Thompson, supra note 29.

34 Gutmann, A., and D. Thompson, supra note 5, p. 28.

35 Cohen, J. (1997). Deliberation and democratic legitimacy. In Bohman, J. and W. Rehg (Eds.). Deliberative 

Democracy: Essays on Reason and Politics (pp. 67-92). Cambridge, MA: MIT Press, pp. 72-73; Mansbridge, 

J., et al. (2012). A Systemic Approach to Deliberative Democracy. In J. Parkinson and J. Mansbridge. (Eds.). 

Deliberative Systems: Deliberative Democracy at the Large Scale (pp. 1-26). New York, NY: Cambridge University 

Press, p. 1.

36 Mansbridge, J. (2007). “Deliberative Democracy” or “Democratic Deliberation”?. In Rosenberg, S.W. (Ed.). 

Deliberation, Participation, and Democracy (pp. 251-271). UK: Palgrave MacMillan, pp. 251-252.

37 Jackson, R., Executive Chair, Sciencewise. (2015). Facilitating public dialogue about bioethics. Presentation to 

the Presidential Commission for the Study of Bioethical Issues, September 2. Retrieved March 23, 2016 from 

http://bioethics.gov/node/5265.
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38 Gutmann, A., and D. Thompson, supra note 5, p. 39.

39 Mill, J.S. (1861). Considerations on Representative Government. Kitchener, Canada: Batoche Books, p. 46.

40 Dzur, A.W., and D. Levin, supra note 12, p. 341.

41 Gutmann, A., and D. Thompson, supra note 5, pp. 40-41; Dzur, A.W., and D. Levin, supra note 12, p. 334.

42 Capron, A.M. (2015, May 28). Room for debate. New York Times; Capron, A.M., Board Chair, Public 

Responsibility in Medicine and Research. (2015, May 27). Comments submitted to the Presidential 

Commission for the Study of Bioethical Issues (PCSBI).

43 Gutmann, A., and D. Thompson, supra note 5, p. 40.

44 Mansbridge, J., supra note 36.

45 Federal Advisory Committee Act. 5 U.S.C. §§ 10, 11.

46 Sarewitz, D. (2015). CRISPR: Science can’t solve it. Nature, 522(7557), 413-414.

47 World Wide Views. (2015). World Wide Views on Climate and Energy [Synthesis of Results]. Retrieved 

March 24, 2016 from http://climateandenergy.wwviews.org/wp-content/uploads/2015/09/WWviews-ResultReport_english_low.pdf.

48 World Wide Views on Climate and Energy. (n.d.) The Method. Retrieved March 24, 2016 from http://

climateandenergy.wwviews.org/the-method/.

49 United Nations Framework Convention on Climate Change. (2015, September 25). Global citizens strong 

support for ambitious Paris agreement: World Wide Views presents consultation results at UN [Press Release]. 

Retrieved March 24, 2016 from http://newsroom.unfccc.int/unfccc-newsroom/world-wide-views-new-yorkpress-release/; World Wide Views. (2015, December 16). WWViews: The citizens’ voice at COP21 [Blog]. 

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50 New York State Department of Health. (n.d.). Task Force on Life and the Law: Reports and Publications 

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reports_publications/.

51 New York State Department of Health. (n.d.). Task Force on Life and the Law [Webpage]. Retrieved March 24, 

2016 from https://www.health.ny.gov/regulations/task_force/.

52 Ibid.

53 Ibid.

54 American Medical Association. (n.d.). Opinion 9.11 - Ethics Committees in Health Care Institutions. Retrieved 

March 24, 2016 from http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medicalethics/opinion911.page.

55 Ethics in Medicine, University of Washington School of Medicine. (n.d.). Ethics Committees, Programs and 

Consultations. Retrieved March 24, 2016 from https://depts.washington.edu/bioethx/topics/ethics.html.

56 American Medical Association, supra note 54; McGee, G., et al. (2002). Successes and failures of hospital ethics 

committees: A national survey of ethics committee chairs. Cambridge Quarterly of Healthcare Ethics, 11(1), 

87-93; McGee, G., et al. (2001). A national study of ethics committees. The American Journal of Bioethics, 1(4), 

60-64.

57 Presidential Commission for the Study of Bioethical Issues (PCSBI). (2013, March). Safeguarding Children: 

Pediatric Medical Countermeasure Research. Washington, DC: PCSBI, pp. vii-viii, 4-5.

58 King, J. C., et al. (2015). Evaluation of anthrax vaccine safety in 18 to 20 year olds: A first step towards age 

de-escalation studies in adolescents. Vaccine, 33(21), 2470-2476.

59 Presidential Commission for the Study of Bioethical Issues (PCSBI). (2015, March). Gray Matters: Topics at the 

Intersection of Neuroscience, Ethics, and Society. Washington, DC: PCSBI.
ENDNOTES

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60 Kim, S.Y.H., et al. (2009). Assessing the public’s views in research ethics controversies: Deliberative democracy 

and bioethics as natural allies. Journal of Empirical Research on Human Research Ethics, 4(4), 3-16; Kim, 

S.Y.H., et al. (2011). Effect of public deliberation on attitudes toward surrogate consent for dementia research. 

Neurology, 77(24), 2097-2104.

61 Proposal to Improve Rules Protecting Human Research Subjects, 80 Fed. Reg. 173, 53969 (September 8, 2015).

62 Mansbridge, J., supra note 36.

63 Gutmann, A., and D. Thompson, supra note 5, 38-41.

64 Community Ethics Committee. (2014, February). Organ Transplant Recipient Listing Criteria. Retrieved 

March 24, 2016 from http://bioethics.hms.harvard.edu/sites/g/files/mcu336/f/CEC-REPORT-OrganTransplant-Listing-Criteria-February-2014.pdf.

65 Willard, J. (2015). Structuring bioethics education: The question, the disciplines, and the integrative challenge. 

Ethics and Social Welfare, 9(3), 280-296.

66 Community Ethics Committee. (2015, July 4). Comments submitted to the Presidential Commission for the 

Study of Bioethical Issues (PCSBI), p. 1.

67 Gutmann, A. (2011). The ethics of synthetic biology: Guiding principles for emerging technologies. Hastings 

Center Report, 41(4), 17-22, p. 20.

68 PCSBI, supra note 57.

69 Presidential Commission for the Study of Bioethical Issues. (PCSBI). (2015, February). Ethics and Ebola: Public 

Health Planning and Response. Washington, DC: PCSBI, p. 8.

70 UNICEF. (2015, January). Liberia: Ebola Situation Report no. 69. Retrieved March 25, 2015 from http://www.

unicef.org/appeals/files/UNICEF_Liberia_SitRep_14_January_2015.pdf.

71 Pitts, D. (2015). Guinea: Meaningful Messengers [Presentation Abstract, 2015 National Conference on Health 

Communication, Marketing, & Media]. Retrieved March 25, 2016 from https://cdc.confex.com/cdc/nphic15/

webprogram/Paper36118.html.

72 Fishkin, J.S., and R.C. Luskin. (2005). Experimenting with a democratic ideal: Deliberative polling and public 

opinion. Acta Politica, 40(3), 284-298.

73 PCSBI, supra note 59.

74 PCSBI, supra note 69, pp. 8-9.

75 Fishkin, J.S. (2006, March 1). The nation in a room: Turning public opinion into policy. Boston Review. 

Retrieved March 25, 2016 from https://www.bostonreview.net/james-fishkin-nation-in-a-room-turningpublic-opinion-into-policy.

76 Ibid.

77 Ibid; Gastil, J., Head and Professor, Communication Arts and Sciences and Political Science, The Pennsylvania 

State University. (2015). Fostering and measuring success in ethics and deliberation. Presentation to the 

Presidential Commission for the Study of Bioethical Issues, September 2. Retrieved March 25, 2016 from 

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78 Gastil, J., supra note 77.

79 Mansbridge, J., supra note 36, p. 11.

80 Gutmann, A., and D. Thompson, supra note 3, pp. 3-4.

81 Fishkin, J.S., et al. (2010). Deliberative democracy in an unlikely place: Deliberative polling in China. British

Journal of Political Science, 40(2), 435-448; Danis, M., Head, Section on Ethics and Health Policy, Department 

of Bioethics, National Institutes of Health (NIH) Clinical Center. (2015). Facilitating public dialogue about 

bioethics. Presentation to the Presidential Commission for the Study of Bioethical Issues, September 2. 

Retrieved March 25, 2016 from http://bioethics.gov/node/5265.
98

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82 Luskin, R. C., et al. (2014). Deliberating across deep divides. Political Studies, 62(1), 116-135; Evans, F., 

Deliberative Poll Participant, What’s Next California. (2015). Facilitating public dialogue about bioethics. 

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25, 2016 from http://bioethics.gov/node/5265.

83 Sciencewise. (n.d.). Background. Retrieved March 25, 2016 from http://www.sciencewise-erc.org.uk/cms/

background/.

84 Sciencewise, supra note 25.

85 Jackson, R., supra note 37.

86 Gastil, J., Richards, R.C., and K.R. Knobloch, (2014). Vicarious deliberation: How the Oregon Citizens’ 

Initiative Review influenced deliberation in mass elections. International Journal of Communication, 8, 62-89.

87 Knobloch, K.R., et al., supra note 7.

88 Safier, P., supra note 14.

89 Ibid.

90 Ibid.

91 Ibid.

92 Ibid.

93 S. 27, 65th Legis. Assemb., § 4 (Or. 1989).

94 Safier, P., supra note 14.

95 Ibid; Fleck, L.M. (1994). Just caring: Oregon, health care rationing, and informed democratic deliberation. 

Journal of Medicine and Philosophy, 19(4), 367-388.

96 S. 27, supra note 93.

97 Safier, P., supra note 14; Fleck, L.M., supra note 95.

98 Safier, P., supra note 14, p. 337.

99 Thompson, D., supra note 6.

100 PCSBI, supra note 69.

101 Kim, S.Y.H., et al, supra note 60.

102 Knobloch, K.R., et al., supra note 7; De Vries, R., et al., supra note 7.

103 Thompson, D.F. (2008). Deliberative Democratic Theory and Empirical Political Science. American Review of 

Political Science, 11, 497-520.

104 King, Jr., M.L. (1947). The Purpose of Education. In Carson et al (Eds.). (1992). The Papers of Martin Luther 

King, Jr., Volume I: Called to Serve, January 1929-June 1951 (pp. 123-124). Berkeley, CA: University of 

California Press, p. 124.

105 Presidential Commission for the Study of Bioethical Issues (PCSBI). (2011, September). “Ethically Impossible” 

STD Research in Guatemala from 1946 to 1948. Washington, DC: PCSBI, p. 2-3.

106 Ibid; Jones, J.H. (1993). Bad Blood: The Tuskegee Syphilis Experiment. New York, NY: The Free Press.

107 U.S. Department of Education (ED). (n.d.). Every Student Succeeds Act (ESSA). Retrieved March 25, 2016 

from http://www.ed.gov/essa.

108 Commission on the Teaching of Bioethics. (1976). Part Two: The Scope of Bioethics Teaching. In The Teaching 

of Bioethics (pp. 14-60). Hastings-on-Hudson, NY: The Hastings Center: Institute of Society, Ethics, and the 

Life Sciences, p. 49.
ENDNOTES

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109 Lee L.M., and F.A. McCarty. (2016). Emergence of a discipline? Growth in U.S. postsecondary bioethics 

degrees. Hastings Center Report, 46(2), 19-21.

110 Commission on the Teaching of Bioethics, supra note 108; Andre, J. (2002). Bioethics as Practice. Chapel Hill, 

North Carolina: University of North Carolina Press; Sugarman, J., and Sulmasy, D. P. (2010). Part I: Overview. 

In Sugarman, J., and Sulmasy, D. P. (Eds.). Methods in Medical Ethics. Second Edition. Washington, DC: 

Georgetown University Press, pp. 3-36.

111 Commission on the Teaching of Bioethics, supra note 108, p. 17.

112 Franklin, B. (1976) [1749]. Proposals Relating to the Education of Youth in Pennsylvania. In Journal of General 

Education, 28(3), 256-261.

113 Miller, G. (2008). Students learn how, not what, to think about difficult issues. Science, 322(5899), 186-187.

114 Joffe, S., Emanuel and Robert Hart Associate Professor of Medical Ethics and Health Policy, University 

of Pennsylvania Perelman School of Medicine. (2015). Goals of and Approaches to Bioethics Education. 

Presentation to the Presidential Commission for the Study of Bioethical Issues, May 27. Retrieved March 23, 

2016 from http://bioethics.gov/node/4945.

115 Gutmann, A., supra note 1, pp. 232-255.

116 Mill, J.S. (1867). Inaugural address at the University of St. Andrews. In J.M. Robson (Eds). (1984). Collected 

Works, Volume XXI: Essays on Equality, Law, and Education (pp. 215-257). Toronto, Canada: University of 

Toronto Press, p. 217.

117 Ibid, p. 218.

118 Smetana, J.G. (1981). Preschool children’s conceptions of moral and social rules. Child Development, 52(4), 

1333-1336.

119 Primary Ethics. (n.d.). Our History. Retrieved March 23, 2016 from http://www.primaryethics.com.au/

ourhistory.html.

120 Primary Ethics. (n.d.). K-6 Curriculum. Retrieved March 23, 2016 from http://www.primaryethics.com.

au/K-6curriculum.html.

121 Knight, S., supra note 9.

122 Character.org, (n.d.). Vision and Mission [Webpage]. Retrieved March 23, 2016 from http://character.org/

about/vision-and-mission/.

123 Character.org, (n.d.). Character.org Announces Record Number of Applicants with its Schools 

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124 Bishop, L.J., and L. Szobota. (2015). Teaching bioethics at the secondary school level. Hastings Center 

Report, 45(5), 19-25; Others have documented how learning through discussion (regardless of content) occurs 

more frequently in courses for high-achieving students. See, Nystrand, M., et al. (2003). Questions in time: 

Investigating the structure and dynamics of unfolding classroom discourse. Discourse Processes, 35(2), 135–198.

125 Schmidt, W.H., et al. (2015). The role of schooling in perpetuating educational inequality: An international 

perspective. Educational Researcher, 44(7), 371-386.

126 Dávila, A. and M.T. Mora. (2007). An assessment of civic engagement and educational attainment. Retrieved 

March 23, 2016 from http://www.civicyouth.org/PopUps/FactSheets/FS_Mora.Davila.pdf.

127 Bishop, L.J., and L. Szobota., supra note 124.

128 Jennings, B., et al. (1990). New Choices, New Responsibilities: Ethical Issues in the Life Sciences. Briarcliff Manor, 

NY: The Hastings Center.

129 Lundmark, C. (2002). Improving the science curriculum with bioethics. BioScience, 52(10), 881.

130 Bishop, L.J., and L. Szobota., supra note 124.
100

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131 National Institutes of Health (NIH) Clinical Center Department of Bioethics. (2009). Exploring Bioethics 

[Curriculum Supplement]. Retrieved March 25, 2016 from https://science.education.nih.gov/supplements/nih9/

bioethics/guide/pdf/teachers_guide.pdf.

132 Kennedy Institute of Ethics. (n.d.) High School Bioethics Curriculum Project: Workshop Archive. Retrieved 

March 23, 2016 from https://highschoolbioethics.georgetown.edu/archive/workshops/; Lundmark, C., supra

note 129; NIH, supra note 131.

133 Hess, D. (2009). Controversy in the Classroom. New York, NY: Routledge, p. 57.

134 Ibid, pp. 56-60.

135 Ibid, p. 61.

136 Ibid, pp. 60-65.

137 Ibid, p. 67.

138 Ibid, pp. 65-71.

139 Ibid, p. 76.

140 Little, M., Director, Kennedy Institute of Ethics; Professor of Philosophy, Georgetown University. (2015). 

Goals of and Approaches to Bioethics Education. Presentation to the Presidential Commission for the Study of 

Bioethical Issues, May 27. Retrieved March 23, 2016 from http://bioethics.gov/node/4945.

141 Ibid.

142 Ibid.

143 Callahan, D. (1980). Goals in the Teaching of Ethics. In D. Callahan and S. Bok (Eds.). Ethics Teaching in 

Higher Education (pp. 61-80). New York, NY: Plenum Press, pp. 79-80.

144 Ibid.

145 Ladenson, R. (2001). The educational significance of the ethics bowl. Teaching Ethics, 1(1), 63-78, 68.

146 Ibid.

147 For a list of all past national and regional IEB cases, see Association for Practical and Professional Ethics. 

(n.d.). Cases, Rules, and Guidelines. Retrieved March 24, 2016 from http://appe.indiana.edu/ethics-bowl/

previous-cases/. 

148 Skipper, R.B. et al., (2016). Cases for the Twentieth Intercollegiate Ethics Bowl National Championship [Case 

Packet]. Retrieved March 29, 2016 from http://appe.indiana.edu/files/9014/5288/0828/National_Ethics_

Bowl_Cases_2016_corrected.pdf.

149 Arora, K. et al. (2016). 2016 Bioethics Bowl Case Packet [Case Packet]. Retrieved March 29, 2016 from http://

nubc2016.com/wp-content/uploads/2014/12/2016-Bioethics-Bowl-Case-Packet.pdf; National Undergraduate 

Bioethics Conference 2014. (n.d.). Bioethics Bowl Competition. Retrieved from https://nubc2014.wordpress.

com/13-2/.

150 Association for Practical and Professional Ethics (APPE). (n.d.). About Ethics Bowl: Intercollegiate Ethics Bowl. 

Retrieved March 22, 2016 from http://appe.indiana.edu/ethics-bowl/ethics-bowl/.

151 Illinois Institute of Technology Center for the Study of Ethics in the Professions. (n.d.). QED: The Ethical 

Debaters. Retrieved 3/22/2016 from http://ethics.iit.edu/teaching/ethics-bowl/iit-team.

152 Solomon, M., President, The Hastings Center; Clinical Professor of Anaesthesia, Harvard Medical School. 

(2013). Integrating Ethics and Neuroscience through Education. Presentation to the Presidential Commission 

for the Study of Bioethical Issues, December 18. Retrieved March 24, 2016 from http://bioethics.gov/

node/3238.

153 Pellegrino, E.D. and T.R. McElhinney. (1982). Teaching Ethics, the Humanities, and Human Values in 

Medical Schools: A Ten-Year Overview. Washington, D.C.: Institute on Human Values in Medicine, Society for 

Health and Human Values.
ENDNOTES

101

154 Lehmann, L.S., et al. (2004). A survey of medical ethics education at U.S. and Canadian medical schools. 

Academic Medicine, 79(7), 682-689.

155 Ibid; Macklin, R. (1993). Teaching bioethics to future health professionals: A case-based clinical model. 

Bioethics, 7(2-3), 200-206; Carrese, J.A., et al. (2015). The essential role of medical ethics education in achieving 

professionalism: The Romanell report. Academic Medicine, 90(6), 744-752.

156 Lee, L.M., Wright, B., and S. Semaan, supra note 10.

157 Ulrich, C., supra note 10; Grady, C., et al. (2008). Does ethics education influence the moral action of 

practicing nurses and social workers? American Journal of Bioethics, 8(4), 4-11.

158 Solomon, M., supra note 152; Anderson, M.A. (2016). Pedagogical support for responsible conduct of research 

training. Hastings Center Report, 46(1), 18-25.

159 Solomon, M., supra note 152.

160 Anderson, M.A., supra note 158; Presidential Commission for the Study of Bioethical Issues (PCSBI). (2014, 

May). Gray Matters: Integrative Approaches for Neuroscience, Ethics, and Society. Washington, DC: PCSBI.

161 Sulmasy, D.P. (2000). Should medical schools be schools for virtue? Journal of General Internal Medicine, 15(7), 

514-516.

162 Anderson, M.S., et al. (2007). What do mentoring and training in the responsible conduct of research have to 

do with scientists’ misbehavior? Findings from a national survey of NIH-funded scientists. Academic Medicine, 

82(9), 853-860.

163 Wald, H.S., et al. (2015). Professional identify formation in medical education for humanistic, resilient 

physicians: Pedagogic strategies for bridging theory to practice. Academic Medicine, 90(6), 753-760.

164 Sabatino, C.P. (2014). Advance care planning tools that educate, engage, and empower. Public Policy & Aging 

Report, 24(3), 107-111; Tucker, E. (2014, March 22). What on earth is a death cafe? The Guardian. Retrieved 

March 24, 2016 from http://www.theguardian.com/lifeandstyle/2014/mar/22/death-cafe-talk-about-dying; 

Health Ethics Australia. (n.d.) Building health ethics literacy for Australians [Webpage]. Retrieved March 24, 

2016 from http://www.healthethicsaustralia.com/our-activities. 

165 Alzheimer’s Association. (2011). Protection of Participants in Research Studies. Retrieved March 24, 2016 from 

http://www.alz.org/documents_custom/statements/Protection_of_Participants_in_Research.pdf.

166 Alzheimer’s Association. (2012). Ethical Issues and Dementia. Retrieved March 24, 2016 from https://www.alz.

org/library/downloads/ethics_rl2012.doc.pdf.

167 AARP. (2000). AARP Survey on Lifelong Learning [Research Report]. Retrieved March 24, 2016 from http://

assets.aarp.org/rgcenter/general/lifelong.pdf, pp. 15-16.

168 Ibid, pp. 16.

169 Ibid, pp. 37, 78.

170 PCSBI, supra note 160, pp. 12-18.

171 Bishop, L.J., and L. Szobota., supra note 124; Chowning, J.T. (2005). How to have a successful science and 

ethics discussion. Science Teacher, 72(9), 46-50; Chowning, J.T. (2009). Why societal issues belong in science 

class. Science Teacher, 76(7), 8; The Wellcome Trust. (2001). Valuable Lessons: Engaging with the social context 

of science in schools [Recommendations and summary of research findings]. Retrieved March 24, 2016 from 

http://www.wellcome.ac.uk/stellent/groups/corporatesite/@msh_peda/documents/web_document/wtd003446.

pdf.

172 Hess, D.E., and P. McAvoy, supra note 20, p. 6.

173 Bishop, L.J., and L. Szobota., supra note 124, p. 21.

174 Northwest Association for Biomedical Research. (n.d.). Teacher Center [Webpage]. Retrieved March 24, 2016 

from https://www.nwabr.org/teacher-center; Chowning, J.T. and P. Fraser. (2007). An Ethics Primer [Instructor 

guide]. Retrieved March 24, 2016 from https://www.nwabr.org/sites/default/files/NWABR_EthicsPrimer7.13.

pdf.
102

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175 Miller, G., supra note 113.

176 NIH, supra note 131.

177 Carrese, J.A., et al., supra note 155.

178 DuBois, J.M., and J. Burkemper. (2002). Ethics education in U.S. medical schools: A study of syllabi. Academic 

Medicine, 77(5), 432-437.

179 Ripple, C., Associate Director for Education Research and Engagement, Duke University Social Science 

Research Institute. (2015). Fostering and Measuring Success in Ethics and Deliberation. Presentation to the 

Presidential Commission for the Study of Bioethical Issues, September 2. Retrieved March 24, 2016 from 

http://bioethics.gov/node/5268.

180 Ibid.

181 Hess, D.E., and P. McAvoy, supra note 20, p. 6; McAvoy, P., and D. Hess. (2013). Classroom deliberation in 

an era of political polarization. Curriculum Inquiry, 43(1), 14-47, p. 21; Chowning, J.T. (2005), supra note 171; 

Miller, G., supra note 113.

182 Bishop, L., Head of Academic Programs, Kennedy Institute of Ethics, Georgetown University. (2015). 

Implementing Innovations in Ethics Education. Presentation to the Presidential Commission for the Study of 

Bioethical Issues, November 17. Retrieved March 23, 2016 from http://bioethics.gov/node/5358.

183 Commission on the Teaching of Bioethics, supra note 108, p. 16.

184 Sherlock, R. (2015, November 28). How political correctness rules in America’s student ‘safe spaces.’ The 

Telegraph. Retrieved March 24, 2016 from http://www.telegraph.co.uk/news/worldnews/northamerica/

usa/12022041/How-political-correctness-rules-in-Americas-student-safe-spaces.html; Lukianoff, G., and J. 

Haidt. (2015, September). The coddling of the American mind. The Atlantic. Retrieved on March 24, 2016 from 

http://www.theatlantic.com/magazine/archive/2015/09/the-coddling-of-the-american-mind/399356/.

185 Steiner, D.M. (2014, February 21). The new common core assessments: How they could stop patronizing our 

students. Huffington Post. Retrieved March 24, 2016 from http://www.huffingtonpost.com/david-m-steiner/

the-new-common-core-asses_b_4809973.html.

186 Hess, D.E., and P. McAvoy, supra note 20, p. 6.

187 Chowning, J.T., supra note 171.

188 Common Core State Standards Initiative. (2010). Common Core State Standards for English Language Arts & 

Literacy in History/Social Studies, Science, and Technical Subjects [Educational Standards]. Retrieved March 

25, 2016 from http://www.corestandards.org/wp-content/uploads/ELA_Standards1.pdf, pp. 45, 49-50.

189 Next Generation Science Standards. (2013). APPENDIX J–Science, Technology, Society and the Environment. 

Retrieved March 13, 2016 from http://nextgenscience.org/sites/default/files/APPENDIX%20J_0.pdf.

190 PCSBI, supra note 160, p. 24.

191 PCSBI, supra note 160, pp. 24-30.

192 Gutmann, A., supra note 1, pp. 282-291, et passim.

193 Primary Ethics, supra note 8.

194 Knight, S., supra note 9.

195 Miller, G., supra note 113.

196 Pellegrino, E.D. (2001). The internal morality of clinical medicine: a paradigm for the ethics of the helping 

and healing professions. Journal of Medicine and Philosophy, 26(6), 559-579; Andre, J. (1991). Role morality as a 

complex instance of ordinary morality. American Philosophical Quarterly, 28(1), 73-80.

197 Presidential Commission for the Study of Bioethical Issues (PCSBI). (2013, December). Anticipate and 

Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-toConsumer Contexts. Washington, DC: PCSBI.
ENDNOTES

103

198 PCSBI, supra note 4, p. 11.

199 Lee, L.M., Wright, B., and S. Semaan, supra note 10; Ulrich, C., supra note 10.

200 PCSBI, supra note 160, pp. 12-23.

201 Hess, D.E., and P. McAvoy, supra note 20, p. 6; Chowning, J.T., supra note 171; Miller, G., supra note 113.

202 Chowning, J.T., et al. (2012). Fostering critical thinking, reasoning, and argumentation skills through bioethics 

education. PloS one, 7(5), e36791; NIH, supra note 131.

203 PCSBI, supra note 160, p. 24.

204 McAvoy, P., and D. Hess., supra note 181, pp. 24-25.

205 Bishop, L.J., and L. Szobota., supra note 124.

206 Hess, D., supra note 133, p. 76. [Original emphasis].

207 Ladenson, R., supra note 145, pp. 68-79.

208 Ibid, p. 68.

209 Dzur, A.W., and D. Levin, supra note 12, 333-360.

210 Fink, R.D. (2002). Cloning, stem cells, and the current national debate: Incorporating ethics into a large 

introductory biology course. Cell Biology Education, 1(4), 132-144.

211 Cong, L., et al. (2013). Multiplex genome engineering using CRISPR/Cas systems. Science, 339(6121), 819-823; 

Jinek, M., et al. (2012). A programmable dual-RNA–guided DNA endonuclease in adaptive bacterial immunity. 

Science, 337(6096), 816-821; Knoepfler, P. (2015, November 30). We need a moratorium on genetically 

modifying humans. Slate. Retrieved March 25, 2016 from http://www.slate.com/articles/health_and_science/

science/2015/11/crispr_genetic_modification_should_not_be_used_on_humans.html.

212 Knoepfler, P., supra note 211.

213 Ledford, H. (2015). CRISPR, the disruptor. Nature, 522(7554), 20-24; Gene editing tool can remove HIV 

DNA from infected cells. (2016, March 27). News Independent. Retrieved March 30, 2016 from http://www.

thenewsindependent.com/gene-editing-tool-can-remove-hiv-dna-infected-cells/11229/.

214 Ledford, H., supra note 213; Krieger, L.M. (2015, December 3). Gene editing: Don’t use in 

human reproduction, says panel. Santa Cruz Sentinel. Retrieved March 25, 2016 from http://www.

santacruzsentinel.com/article/ZZ/20151203/NEWS/151208848; Basulto, D. (2015, November 

4). Everything you need to know about why CRISPR is such a hot technology. Washington Post. 

Retrieved March 25, 2016 from https://www.washingtonpost.com/news/innovations/wp/2015/11/04/

everything-you-need-to-know-about-why-crispr-is-such-a-hot-technology/.

215 Basulto, D., supra note 214.

216 Sandel, M.J. (2004, April). The case against perfection. Atlantic Monthly. Retrieved March 25, 2016 from http://

www.theatlantic.com/magazine/archive/2004/04/the-case-against-perfection/302927/; Habermas, J. (2003). 

The Future of Human Nature. Cambridge, UK: Polity Press.

217 The National Academies of Sciences, Engineering, Medicine. (n.d.) About the Study. Retrieved March 25, 2016 

from http://nationalacademies.org/gene-editing/consensus-study/about/index.htm.

218 Krieger, L.M., supra note 214.
104

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology
105

APPENDICES
106

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

Appendix I: Steps for Deliberation

This appendix provides a condensed guide for how to conduct democratic 

deliberation in any context. Facilitators of deliberative processes can use this 

guide as a resource to determine whether deliberation is appropriate for the 

question at hand, and as a guide to the steps for conducting the process.1

Step I. Begin with an open policy question

• Choose an open question and consider distinct points of view. The question should have an 

applied component, including questions about how to move forward and what should be done. 

• Example in bioethics: The Bioethics Commission deliberated about numerous open 

questions, including: What are the ethical implications of the emerging science of 

synthetic biology and how should we address them? Should the government move ahead 

with pediatric testing of medical countermeasures in the face of unknown or unknowable 

risk of a bioterrorism event? What are the core ethical standards that should guide 

neuroscience research and its applications.

Step II. Time deliberation for maximum impact

• Allow ample lead time for deliberation before a decision becomes absolutely necessary. 

In the case of an ongoing emergency situation, conduct deliberation simultaneously, and 

apply results as soon as possible.

• Example in bioethics: In the Bioethics Commission’s work on Ethics and Ebola, an 

ongoing public health emergency, deliberations were conducted quickly with the hope of 

providing policy guidance in the midst of an emergency. In its work on pediatric medical 

countermeasures the Bioethics Commission’s deliberations were conducted in advance 

of a potential bioterrorism attack, so that guidance could be provided with ample time to 

implement ethical policy and sound science. 

Step III. Invite input from experts and the public

• Use sound and relevant information to inform the deliberation. If new information 

emerges, integrate it into the deliberation. Evaluate evidence through an established and 

reliable mechanism before and during deliberation. Make established facts, in the form 

of accessible background materials, available to all participants. 

1 For a more in-depth discussion of this process, including resources for further reading, see Chapter 2 of this report.
APPENDICES

107

•

•

•

•

•

Example in bioethics: For each of its topics, the Bioethics Commission sought to uncover 

all relevant facts and emerging evidence through thorough background research, 

input from members of the public, and testimony from invited experts and community 

members, including individuals from affected communities. 

Step IV. Foster open discussion and debate

Cultivate an environment that encourages participants in the deliberation to practice 

mutual respect and reason-giving. 

Example in bioethics: After hearing testimony from experts and community members 

at each meeting, the Bioethics Commission engaged in roundtable discussions with 

speakers to allow for an exchange of ideas and perspectives. The background and 

experiences of the experts and community members, combined with that of the 

Bioethics Commission members fostered thoughtful and robust discussion, enhanced by 

the integration of public comment. 

Step V. Develop detailed, actionable recommendations 

Feed decisions back into the policymaking process whenever possible, either by 

making the results of deliberation binding, or by asking participants to develop a set of 

recommendations that policymakers can use to guide their decisions. 

Example in bioethics: In all of its reports, the Bioethics Commission developed detailed, 

actionable recommendations, many of which have been implemented into policy, 

law, or practice. For example, in its report Privacy and Progress in Whole Genome 

Sequencing, the Bioethics Commission recommended that laws be drafted to protect 

individuals’ genetic privacy. The California legislature introduced such a law, modeled 

after the Bioethics Commission’s recommendation.1

 In the Bioethics Commission’s 

report Anticipate and Communicate: Ethical Management of Incidental and Secondary 

Findings in the Clinical, Research, and Direct-to-Consumer Contexts, it recommended 

that clinicians respect a patient’s preference to opt-out of receiving incidental and 

secondary findings, consistent with the clinician’s fiduciary duty. The American College 

of Medical Genetics and Genomics (ACMG) initially concluded that these findings be 

reported without consideration of patient preferences, but subsequent to the Bioethics 

Commission’s recommendation, the ACMG updated its stance, allowing patients to opt 

out of receiving such findings if desired.

1 See more at: http://blog.bioethics.gov/2013/03/12/privacy-and-progress-inspires-california-genetic-informationprivacy-bill/. 

Step III continued
108

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

Appendix II: List of the Bioethics Commission’s Educational 

Materials by Format*

Case Studies

Public Health Case Studies Introduction

Communicating During a Public Health Emergency

Ethical Use of Liberty-restricting Public Health Measures

Conversation Series

For Consumers: A Guide to Incidental Findings

For Patients: A Guide to Incidental Findings

For Research Participants: A Guide to Incidental Findings

Deliberative Scenarios

Guide to Classroom Deliberation for Students and Teachers

Deliberative Scenario: The Use of Prescription Stimulants for Enhanced 

Academic Performance

Teacher Companion for Deliberative Scenario: The Use of Prescription Stimulants for 

Enhanced Academic Performance

Deliberative Scenario: Law Enforcement Access to a University's Genetic Database

Teacher Companion for Deliberative Scenario: Law Enforcement Access to a 

University's Genetic Database

Discussion Guides

Classroom Discussion Guide on Ethics and Neuroscience

Classroom Discussion Guide on Ethics and Public Health Emergencies

Empirical Research Resources

Guatemala Subject Data Spreadsheet

Human Subjects Research Landscape Project – Analysis Dataset

Primers

For Clinicians: Incidental and Secondary Findings

For Direct-to-Consumer Providers: Incidental and Secondary Findings

For IRB Members: Incidental and Secondary Findings

For Researchers: Incidental and Secondary Findings

For Researchers: Neuroscience and Consent Capacity
APPENDICES

109

Videos

Promoting and Providing Materials for Bioethics Education

The Role of a Presidential Bioethics Commission

Who is the Bioethics Commission?

Challenging Topics for the Bioethics Commission

Incidental Findings: Why Practitioners Need a Plan

Gray Matters

What Goes into Successful Deliberation?

Study Guides

Study Guide to “Ethically Impossible” STD Research in Guatemala from 1946 to 1948

Study Guide to "Ethically Impossible” STD Research in Guatemala from 1946 to 1948 

(Spanish translation)

Topic-Based Modules (listed by topic)

COMMUNITY ENGAGEMENT

Community Engagement Background

Community Engagement in New Directions: The Ethics of Synthetic Biology and 

Emerging Technologies

Community Engagement in Moral Science: Protecting Participants in Human 

Subjects Research

Community Engagement in Privacy and Progress in Whole Genome Sequencing

COMPENSATION

Compensation Background

Compensation in Moral Science: Protecting Participants in Human Subjects Research

Compensation in Safeguarding Children: Pediatric Medical Countermeasure Research

INFORMED CONSENT

Informed Consent Background

Informed Consent in “Ethically Impossible” STD Research in Guatemala from 1946 

to 1948

Informed Consent in Privacy and Progress in Whole Genome Sequencing

Informed Consent in Safeguarding Children: Pediatric Medical Countermeasure 

 Research

Informed Consent in Anticipate and Communicate: Ethical Management of Incidental 

and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts

Informed Consent in Gray Matters
110

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

PRIVACY

Privacy Background

Privacy in Privacy and Progress in Whole Genome Sequencing

Privacy in Ethics and Ebola: Public Health Planning and Response

RESEARCH DESIGN

Research Design Background

Research Design in Gray Matters: Integrative Approaches for Neuroscience, 

Ethics, and Society

Research Design in Ethics and Ebola: Public Health Planning and Response

VULNERABLE POPULATIONS

Vulnerable Populations Background

Vulnerable Populations in “Ethically Impossible” STD Research in Guatemala from 

1946 to 1948

Vulnerable Populations in Safeguarding Children: Pediatric Medical 

Countermeasure Research

Vulnerable Populations in Gray Matters

User Guides

High School Teachers

Researchers

Human Subjects Researchers

Legal Educators

Public Health Professionals

Public Policy Educators

Science Educators

Webinars

Advancing Bioethics Education

Multidisciplinary Implementation of Bioethics Commission Educational Materials

Ethics and Ebola

Gray Matters: Neuroscience, Ethics, and Society

*At the time of printing.
APPENDICES

111

Appendix III: Guest Presenters to the Bioethics Commission 

Regarding Deliberation and Bioethics Education

Laura Bishop, Ph.D. 

Head of Academic Programs

Kennedy Institute of Ethics

Georgetown University 

Marion Danis, M.D.

Head, Section on Ethics 

and Health Policy

Department of Bioethics

National Institutes of Health 

Clinical Center

F. Daniel Davis, Ph.D.

Director of Bioethics

Geisinger Health System

Raymond De Vries, Ph.D.

Professor of Learning Health Sciences

Co-Director, Center for Bioethics 

and Social Sciences in Medicine

Professor of Sociology

Professor of Obstetrics and Gynecology

University of Michigan

Florence Evans

Deliberative Poll Participant

What’s Next California

James S. Fishkin, Ph.D.

Janet M. Peck Professor of 

International Communication 

Director, Center for 

Deliberative Democracy

Stanford University

John Gastil, Ph.D.

Head and Professor 

Communication Arts and Sciences 

and Political Science

The Pennsylvania State University

Diana E. Hess, Ph.D.

Professor of Curriculum and Instruction

University of Wisconsin-Madison

Senior Vice President

Spencer Foundation

Sir Roland Jackson

Executive Chair

Sciencewise

Steven Joffe, M.D., M.P.H.

Emanuel and Robert Hart Associate 

Professor of Medical Ethics and 

Health Policy 

Vice Chair for Medical Ethics

Department of Medical Ethics 

and Health Policy

Perelman School of Medicine 

University of Pennsylvania

Scott Kim, M.D., Ph.D.

Senior Investigator

Department of Bioethics

National Institutes of Health 

Clinical Center

Sue Knight, Ph.D.

Curriculum Author

Primary Ethics Limited

Australia
112

Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology

Robert F. Ladenson, Ph.D.

Emeritus Faculty Associate

Center for the Study of Ethics 

in the Professions

Illinois Institute of Technology

Lisa M. Lee, Ph.D., M.A., M.S.

Executive Director

Presidential Commission for the 

Study of Bioethical Issues

Lisa Lehmann, M.D., Ph.D., M.Sc.

Director, Center for Bioethics

Brigham and Women’s Hospital

Associate Professor of Medicine 

and Medical Ethics

Harvard Medical School

Associate Professor of Health Policy 

and Management

Harvard School of Public Health

Daniel Levin, Ph.D.

Associate Professor

Department of Political Science

University of Utah

Margaret Little, B.Phil., Ph.D.

Director, Kennedy Institute of Ethics

Associate Professor 

Philosophy Department

Georgetown University

Seth Mnookin

Associate Director

MIT Graduate Program in 

Science Writing

Carol Ripple, Ph.D.

Associate Director for Education 

Research and Engagement

Duke University Social Science 

Research Institute

Jason L. Schwartz, Ph.D., M. Bioethics

Harold T. Shapiro Fellow in Bioethics

University Center for Human Values

Princeton University

David Steiner, Ph.D. 

Executive Director

Johns Hopkins Institute for 

Education Policy

Professor, School of Education

Johns Hopkins University

Dennis Thompson, Ph.D.

Alfred North Whitehead Professor of 

Political Philosophy

Faculty of Arts and Sciences

Professor of Public Policy

John F. Kennedy School of Government

Harvard University (Emeritus)

Connie Ulrich, Ph.D., R.N., F.A.A.N.

Associate Professor of Bioethics 

and Nursing

Department of Biobehavioral 

Health Sciences

Secondary Appointment, Department 

of Medical Ethics and Health Policy

Associate Director, NewCourtland 

Center for Transitions and Health

University of Pennsylvania Schools 

of Nursing and Medicine

Presidential Commission for the Study of Bioethical Issues

1425 New York Avenue NW, Suite C-100

Washington, D.C. 20005

(202) 233-3960

http://www.bioethics.gov