bluuebunny/crossref_metadata_2025 huggingface dataset:
Alzheimer's disease and personhood
Authors: Parens Erik
Published: October 2014

As in the United States, the Dutch conversation about assisted suicide emerged primarily in the context of cancer. At least in that context, before acceding to a request for assistance in dying, caregivers must be sure that the person has made a voluntary and carefully considered request, and that her suffering is unbearable and without prospect of improvement. The Dutch have recently been trying to use those criteria in the context of Alzheimer's disease. Given the wave of Alzheimer's cases poised to crash onto wealthy countries, along with emerging technology to detect the disease process before symptoms appear, we should be grateful to the Dutch for that attempt.

As a newcomer to this discussion, however, I was struck that those criteria may have a somewhat odd result. A patient with Alzheimer's disease can easily meet the conditions in the early stage of the disease, when one usually has the mental capacity to request assistance in dying and to make the case that one's existential suffering is unbearable. If one is in the late stage, though, it can be much harder to get such assistance because one does not have that capacity.
New Report Features
Authors: Kaebnick Gregory E.
Published: October 2014

We introduce several new editorial developments in this issue aimed at increasing the conversational give‐and‐take that appears in our pages. First, we are moving our editorial, Another Voice, to a spot following the article it addresses, which allows us to experiment with it a bit, letting it run longer and soliciting multiple editorials–“Other Voices.” Second, our letters section has been rebranded “Exchange” to acknowledge the short essay section that, over the years, it has grown to be. And finally, this issue includes, as a supplement, a guest‐edited Special Report that takes up the idea of a “learning health care system.” It is our hope and plan that this will be the first in an occasional series of externally sponsored Special Reports, and we welcome proposals for additional installments in the series.
The Arguments Matter
Authors: Marquis Don
Published: October 2014

One of three commentaries on “Scholarly Discussion of Infanticide?” by Mirko D. Garasic, and “Reflections from a Troubled Stream: Giubilini and Minerva on ‘After‐Birth Abortion,’” by Michael Hauskeller, from the July‐August 2012 issue.
The Importance of Rationality
Authors: Schaefer G. Owen
Published: October 2014

One of three commentaries on “Scholarly Discussion of Infanticide?” by Mirko D. Garasic, and “Reflections from a Troubled Stream: Giubilini and Minerva on ‘After‐Birth Abortion,’” by Michael Hauskeller, from the July‐August 2012 issue.
The Authors Reply
Authors: Hauskeller Michael
Published: October 2014

A reply by the author of “Reflections from a Troubled Stream: Giubilini and Minerva on ‘After‐Birth Abortion’” to “The Arguments Matter,” by Don Marquis, “The Importance of Rationality,” by G. Owen Schaeffer, and “Reasons and Freedom,” by Alberto Giubilini and Francesca Minerva.
The Outlier
Authors: Kirschner Kristi L.
Published: October 2014

Amy's excellent home care was the only reason she was doing as well as she was. There was no one better at taking care of Amy than her husband. When she had a respiratory infection, Steve managed the necessary increased suctioning, nebulizer treatments, and ventilator, in addition to all the other intimate personal assistance she needed on a routine basis. Yet by law he could not be paid to be her personal care assistant. After a revolving door of unreliable, inadequate assistants and recurring medical crises, Amy and Steve made the painful decision to divorce so he could quit his job and be paid by the state to care for her.
Not with a Bang, but a Whimper: Sherley v. Sebelius
Authors: Davis Dena S.
Published: October 2014

After a tortuous legal process that resembled nothing so much as a game of chutes and ladders, on August 24, 2012, the United States Court of Appeals for the District of Columbia Circuit decided in favor of the Department of Health and Human Services' position that human embryonic stem cell research is not research that harms embryos, and therefore is not a violation of the Dickey‐Wicker Amendment. Bioethicists have been following this case because of our interest in the ethics and politics of embryonic stem cell research, but the final decision hinged largely on a series of rather arcane points of law and procedure.
Determining Death in Uncontrolled DCDD Organ Donors
Authors: Bernat James L.
Published: October 2014

The most controversial issue in organ donation after the circulatory determination of death is whether the donor was truly dead at the moment death is declared. My colleagues and I further analyzed this issue by showing the relevance of the distinction between the “permanent” and the “irreversible” loss of circulatory functions. Permanent cessation means that circulatory function will not return because it will not be restored spontaneously and medical attempts to restore it will not be conducted. By contrast, irreversible cessation means that circulatory function cannot be restored using currently available technology. In this issue of the Report, Kevin Munjal and colleagues criticize the unjustified application of the permanent‐irreversible distinction, which my colleagues and I developed for cDCDD, to their well‐designed and carefully conducted experimental protocol of uncontrolled DCDD (uDCDD) in New York City, for which our analysis was not targeted. They claimed that to determine a donor's death in uDCDD, it is unnecessary to show that permanence is a valid surrogate indicator of irreversibility because the unsuccessful attempt to resuscitate the patient comprises prima facie evidence of circulatory irreversibility. Ironically, that potent justification defending death determination in uDCDD yields limitations that are similar to those created when our permanent‐irreversible distinction is applied to death determination in cDCDD.
Reasonable Disagreement about Identifed vs. Statistical Victims
Authors: DANIELS NORMAN
Published: October 2014

People tend to contribute more—and think they have stronger obligations to contribute more—to rescuing an identified victim rather than a statistical one. Indeed, they are often disposed to contribute more to rescuing a single identified victim than a greater number of statistical ones. By an “identified victim,” I mean Terry Q., lying injured in the passenger seat of the wrecked automobile on the corner of Main Street and Broadway, or Jessica McClure, the child who fell into the Texas well in 1987 and whose family was sent $700,000 in donations for her. We need not know their names, however, and we can accept a very minimal form of identification. By a “statistical victim,” I mean the person who, extrapolating from traffic records, will be in a similar, serious car accident tomorrow (and may then be identified), or the children who will fall into wells next year if we do not cap them better than we did the well that trapped Jessica.

Does this disposition (or perceived obligation) have any normative force? I initially thought there could be no such normative force, but consequentialist and nonconsequentialist arguments, pro and con, have convinced me that reasonable people can disagree with each other. This disagreement poses a problem for political philosophy: how should policy choices take such disagreement into account?
Ethical Oversight: Serving the Best Interests of Patients
Authors: Selby Joe V. , Krumholz Harlan M.
Published: October 2014

The papers by Nancy Kass, Ruth Faden, and colleagues describe an ethical imperative to study clinical care as it is being delivered. The goal of learning from each patient is attractive, but integrating research and clinical practice is not easy. The authors suggest that the bioethical framework in use for the past forty years to oversee clinical research may be as much an impediment to the development of a learning health care system as a means of protecting the interests of patients. This framework draws a bright line between clinical research and clinical care activities, subjecting clinical research to institutional review and ongoing oversight while assuming that clinical care is conducted primarily in the interests of patients and not in need of additional ethical oversight. The authors identify five characteristics that have been used to distinguish the two activities, and they conclude that none succeed. The practical implications of this conclusion are left unspecified, however. Should ethical oversight simply be eliminated for these kinds of research activities on the grounds that oversight is not mandated for clinical care and the two cannot be distinguished?
The Perils of Progress
Authors: MEILAENDER GILBERT
Published: October 2014

In Contested Reproduction, John Evans outlines the results of a major piece of sociological research he has conducted. Evans suspects that reproductive genetic technologies will be a significant issue in coming cultural conflicts in the United States and that religious perspectives will play an important role in determining the shape these conflicts take. If one believes that we are hopelessly and bitterly divided on such issues, then the shape of our future conflicts may simply pit one entrenched side against another. Evans’ findings suggest that ordinary religious believers in the United States have rather complex views about these technologies—more shades of gray than black or white. He concludes that the coming conflicts may be neither as insuperable nor as hopeless as we sometimes suppose. Serious exchange, and not just caricature or dismissal, may characterize even our deep disagreements.

Perhaps so. But a reading of Progress in Bioethics, a collection of essays edited by Jonathan D. Moreno and Sam Berger, might give one pause here, and not because of anything it reveals about the views of religious believers.
Manipulation in the Enrollment of Research Participants
Authors: Mandava Amulya , Millum Joseph
Published: October 2014

Recruitment is a challenge for many biomedical research studies with human participants. Strategies to increase the speed and ease of recruitment are therefore valuable. One way to improve these strategies is to design them so as to make use of other factors that play a role in potential participants’ decisions. In this paper, we analyze the noncoercive ways in which researchers can use knowledge about the decision‐making tendencies of potential participants in order to motivate them to consent to research enrollment. We identify which modes of influence preserve respect for participants’ autonomy and which disrespect autonomy, applying the umbrella term “manipulation” to the latter. We then apply our analysis to a series of cases adapted from the experiences of clinical researchers in order to develop a framework for thinking through the ethics of manipulating people into research participation. All manipulation disrespects autonomy and is therefore pro tanto wrong. However, only deceptive manipulation invalidates the consent that results from it. Use of the other forms of manipulation can be permissible, but only if the outcome of using manipulation is sufficiently good, and the research cannot be carried out using ethically preferable means to obtain consent.
The Author Replies
Authors: Johnston Josephine
Published: October 2014

A reply by the author of “Normalizing Atypical Genitalia: How a Heated Debate Went Astray,” to “The Battle Lines of Sexual Politics and Medical Morality,” by John D. Lantos, and “More Rhetoric Than Argument?” by Ellen K. Feder, Alice Dreger, and Anne Tamar‐Mattis.
Drug Compounding, Drug Safety, and the First Amendment
Authors: Dresser Rebecca
Published: October 2014

In September 2012, news broke of a developing drug disaster in the United States. Health authorities had linked a fungal meningitis outbreak to a contaminated steroid made by a company called the New England Compounding Center. The contaminated steroid was a compounded drug that had not been approved by the Food and Drug Administration, differing from three others that had been approved in that it lacked preservatives present in those agents. Factory inspections revealed unsanitary conditions at NECC's drug production facility. By the time the source of the outbreak was identified, an estimated fourteen thousand people had been injected with the drug. As of December 2012, thirty‐nine had died of meningitis, and hundreds more had been diagnosed with meningitis and other drug‐related conditions.

Many factors contributed to this disaster. One was a 2002 Supreme Court decision holding that a law prohibiting providers of compounded drugs from promoting their products through advertising and other means impermissibly restricted commercial speech.
What's So Meaningful about Meaningful Use?
Authors: Galbraith Kyle L.
Published: October 2014

The 2009 Health Information Technology for Economic and Clinical Health (HITECH) Act aims to promote the use of electronic health records by providing over $27 billion in financial incentives for eligible health care providers who become “meaningful users” of them. The goal of increased “meaningful” electronic health record adoption is to create a more efficient, patient‐centered health care system by lowering providers’ administrative costs, improving coordination of care among multiple providers, and increasing patients’ participation in and responsibility for their own care. Recently published data from the Centers for Disease Control and Prevention's National Center for Health Statistics indicate that the HITECH Act's passage has led to a significant increase in electronic health record use among physicians. However, everyone involved in the conversations surrounding the HITECH Act—health care analysts, policy‐makers, and providers alike—must recognize that “meaningful use” of electronic health records can only be authentically meaningful to both clinicians and patients when certain structural issues are also addressed.
Found Your DNA on the Web: Reconciling Privacy and Progress
Authors: Gutmann Amy , Wagner James W.
Published: October 2014

An article by Melissa Gymrek and colleagues, published this January in Science, described how the researchers used surname inferences from commercial genealogy databases and Internet searches to deduce the identity of nearly fifty research participants whose supposedly private data were stored in large, publicly available datasets. This news comes just months after the Presidential Commission for the Study of Bioethical Issues published a report that expressed serious concerns about personal privacy and security in whole genome sequencing. The bioethics commission (on which we serve as chair and vice‐chair) highlighted the importance of reconciling the enormous public benefits anticipated from research in this area with the potential risks to individuals’ privacy, and it offered several policy proposals to help balance the potential of scientific progress with privacy and respect for persons.

The human subjects research protections laid out in the federal regulations are triggered by the identifiability of data. The participants in the Gymrek et al. study were not “readily identifiable”; however, the data proved far more easily identifiable than expected. With rapidly evolving technology, a precise definition of that notion may be impossible. But if we move the debate from the rhetoric of identifiability to the ethical principles of public beneficence and the centrality of respecting all persons, we find that the real ethical focus must be on promoting generalizable progress while at all times respecting individual privacy.
Continuing education
Authors: Griffin Joyce A.
Published: October 2014

Working at The Hastings Center has been a tremendous professional stepping stone for me. I have long wanted to work in publishing, and I'm leaving the Center to work for America's oldest publisher, John Wiley and Sons. But I feel that my time here has been more than that‐that it has truly continued my education in ways I could not have anticipated. Thank you for letting me be part of your intellectual lives.
If Shaming Reduced Obesity, There Would Be No Fat People
Authors: Tomiyama A. Janet , Mann Traci
Published: October 2014

One of six commentaries on “Obesity: Chasing an Elusive Epidemic,” by Daniel Callahan, from the January‐February 2013 issue.
Obesity Stigma: A Failed and Ethically Dubious Strategy
Authors: Goldberg Daniel S. , Puhl Rebecca M.
Published: October 2014

One of six commentaries on “Obesity: Chasing an Elusive Epidemic,” by Daniel Callahan, from the January‐February 2013 issue.
Good and Bad Ideas in Obesity Prevention
Authors: Walter Jennifer K. , Barnhill Anne
Published: October 2014

One of six commentaries on “Obesity: Chasing an Elusive Epidemic,” by Daniel Callahan, from the January‐February 2013 issue.
National Obesity Rates: A Legitimate Health Policy Endpoint?
Authors: MacDougall D. Robert
Published: October 2014

One of six commentaries on “Obesity: Chasing an Elusive Epidemic,” by Daniel Callahan, from the January‐February 2013 issue.
A “Fair Use” Exception for Public Health Uses of Medical Information?
Authors: Berg Jessica
Published: October 2014

Should public health authorities have access to your personal medical information without your permission? The usual justifications for requiring informed consent do not necessarily apply. That is not to say that consent may be avoided in all situations, just that the reasons for requiring consent in public health are different than for traditional medical treatment.
The Predictable Irrationality of Righteous Minds, and the Work of Ethicists
Authors: Ubel Peter A.
Published: October 2014

As Jonathan Haidt explains in The Righteous Mind, it is often our moral intuitions that come first, rapidly or even automatically, with ethical reasoning coming later. Haidt's book is one of many that have come out in recent years highlighting the relevance of psychology (and its close cousin, neuroscience) for understanding human morality. As a behavioral scientist, I have devoured many of these books. I am fascinated by human nature and love trying to understand why all of us behave and think the way we do. But as a physician ethicist, I often find myself reading these books with a parallel agenda: not just to understand human nature, but also to see whether this line of research has relevance for my work as an ethicist. My bottom line: Understanding moral psychology ought to be a required component of ethics training, not because the science will help us to differentiate between right and wrong, but because it will better equip us to teach ethics in a way that promotes moral behavior in our students.
Shots for Tots?
Authors: Feldman Eric A.
Published: October 2014

By endorsing the use of a vaccine that makes the experience of puffing on a cigarette deeply distasteful, Lieber and Millum have taken the first few tentative steps into a future filled with medical interventions that manipulate individual preferences. It is tempting to embrace the careful arguments of “Preventing Sin” and celebrate the possibility that the profound individual and social costs of smoking will finally be tamed. Yet there is something unsettling about the possibility that parental discretion may be on the cusp of a radical expansion, one that involves a new and unexplored approach to behavior modification.
What's Not Being Shared in Shared Decision‐Making?
Authors: Stark Meredith , Fins Joseph J.
Published: October 2014

What's not to like about shared decision‐making? These programs employ specially crafted decision aids to educate patients about their treatment options and then merge the newly informed patient preferences, both general and treatment‐specific, with guidance from physicians to optimize medical decisions. Sounds great, right? Even better, recent evidence indicates that shared decision‐making programs may also help bend the proverbial cost curve by reducing the use of medical interventions that patients, now properly educated about their options, often say they do not want. The notion that programs to inform and elicit patient choice might also help to align health care delivery with patient preferences for less invasive and therefore less costly treatment options seems the rarest of mutual wins in health care, in which what is best for the individual might also benefit the whole. Yet there has been scant attention to how the goals of patient care and cost‐containment, and perhaps even profitability, coincide or conflict.
Fairness, health, and access
Authors: Gusmano Michael
Published: October 2014

During the past two years, much of my work at The Hastings Center has explored the implementation of health reform in the United States and its implications for poor and vulnerable groups. These projects include a study of access to care for undocumented patients and one that examines state‐level decisions about health reform, including Medicaid expansion and the creation of health insurance “marketplaces.” Both raise issues central to bioethics, including fairness, justice, and the stewardship of society's resources. Our nation spent about 2.7 trillion dollars on health care in 2012, and its major public health insurance programs represent over 20 percent of the federal budget. Despite these investments, there are troubling differences in life expectancy, infant mortality, and premature death depending on factors like income, race, ethnicity, gender, and where people live.
Patient Autonomy and Provider Beneficence Are Compatible
Authors: Brody Howard , Colloca Luana
Published: October 2014

A commentary on “What's Not Being Shared in Shared Decision‐Making?” from the July‐August 2013.
The Authors Reply
Authors: Stark Meredith , Fins Joseph J.
Published: October 2014

A response to a commentary by Howard Brody and Luana Colloca about “What's Not Being Shared in Shared Decision‐Making?” from the July‐August 2013.
The Death Debates: A Call for Public Deliberation
Authors: Rodríguez‐Arias David , Véliz Carissa
Published: October 2014

In this issue of the Report, James L. Bernat proposes an innovative and sophisticated distinction to justify the introduction of permanent cessation as a valid substitute standard for irreversible cessation in death determination. He differentiates two approaches to conceptualizing and determining death: the biological concept and the prevailing medical practice standard. While irreversibility is required by the biological concept, the weaker criterion of permanence, he claims, has always sufficed in the accepted standard medical practice to declare death. Bernat argues that the medical practice standard may be acceptable on the ground that proving circulatory or brain permanence is sufficient to assure complete accuracy for death diagnosis.

The topic requires public deliberation: processes to survey people's opinions and mechanisms to channel their opinions into policy‐making. What is at stake is the nature of our society. Do we want an expertocracy, in which an enlightened few design policies for the greater good of the majority and exploit the lack of public knowledge to achieve compliance?
The Quest for Justice in Global Health
Authors: Benatar Solomon
Published: October 2014

A number of high‐profile ethical dilemmas are embedded in the emerging topic of global health. The three books under review here provide various lenses through which to view them. In Ethics in Global Health: Research, Policy, and Practice, Ruth Macklin offers finely honed contemporary arguments and applies them to the future. Global Justice and Bioethics, a collection of essays edited by Joseph Millum and Ezekiel Emanuel, focuses on theories of justice, and in Long‐term Care, Globalization and Justice, Lisa Eckenwiler looks more broadly at the global implications of caring for the aged in wealthy societies.
Qualms of a Believer in Narrative Ethics
Authors: Mitchell Christine
Published: October 2014

It seems to be a fundamental feature of being human to make meaning out of experiences and events by telling stories. We are born into a web of narratives‐to become a self is, it can seem, to hear others' stories about you and, eventually, to insert yourself into those webs and assert your own story. When we teach ethics illustrated by cases, we tell stories. When children and parents talk about how they came to hospital, what they hoped, how things have gone, what worries them about the decisions we ask them to face, we hear stories. Stories often reveal best the meaning a person attaches to his or her experiences, and stories shape the meaning those experiences will come to have for that person or family as the story is told, retold, and refined. I share the belief of narratologists that most of us are, at our core, storytellers. And I can't help but notice that many of those stories contain moral evaluations, explicitly or implicitly.
Narrative Reciprocity
Authors: Charon Rita
Published: October 2014

I have become curious about reciprocity within clinical practice. A vast topic that mobilizes considerations of money, knowledge, kinship, power, culture, and uses of the body, reciprocity is a strong means by which to achieve the egality required of just health care. Within health care, reciprocity might enable not only so‐called shared decision‐making and patient autonomy. It might open the door to mutual acknowledgement of the value of each participant's beliefs and habits. It might appear as a humble realization that no one understands what health is and a concurrent welcoming curiosity about one another's conception of how the body and speech and mind work. From the intimate to the international levels of care, such forms of reciprocity may culminate in the radical and powerful state of reciprocal recognition.

In this short essay, I will focus on one aspect of reciprocity in health care: the narrative and potentially reciprocal nature of attention in health care. A critical element in the development of therapeutic alliance, clinical accuracy, and effective practice, attention requires a donation of the self as a vessel into which can enter that which is perceived or, from the other side, a penetrating of that which is perceived so that one sees it from within its own vessel.
Narratives Hold Open the Future
Authors: Halpern Jodi
Published: October 2014

Principles are static; narratives move. They show us how people change; they depict character development and moral growth (or decline). They do this by pulling us inside lived time, where we empathize with a character's dilemmas about, and responsibility for, his or her future. This feature of narratives fits well with ethics, for ethics begins with practical questions about what to do or how to be (or even whether to be). Such questions require that one view the future as something one has some freedom to shape. Narrative and principle‐based ethics support each other, and both are necessary, but in this essay I will focus on one side and consider how narrative dynamism enlivens a static bioethical principle, opening up new possibilities for moral action.
The Authors Reply
Authors: Piemonte Nicole , Hermer Laura
Published: October 2014

Reply to a commentary by Kate Robins‐Browne.
The Authors Reply
Authors: Stark Meredith , Fins Joseph J.
Published: October 2014

Reply to a commentary by Kate Robins‐Browne.
Autonomous Choice and the Right to Know One's Genetic Origins
Authors: Ravitsky Vardit
Published: October 2014

In “The Ethics of Anonymous Gamete Donation: Is There a Right to Know One's Genetic Origins?,” Inmaculada de Melo‐Martín deconstructs the interests the right is supposed to protect. She argues that these interests are not set back or thwarted when one has no access to one's genetic origins. The basis of her argument is that we lack robust empirical evidence that donor‐conceived individuals suffer certain alleged harms, and that even when such harms are present, they do not provide strong enough justification to ground the right.

Indeed, the research on the needs, preferences, and well‐being of donor‐conceived individuals is scant. In fact, we lack robust empirical evidence regarding all aspects of donor conception. I argue, however, that the right to know one's genetic origins does not rest on empirical evidence. Some donor‐conceived individuals who are unable to know their genetic origins may suffer great harms. Others may suffer no harm at all. But all are treated wrongly when they are deprived of the ability to access information about their genetic origins. They are deprived of an important aspect of their autonomy: the liberty to choose what meaning they assign to the genetic components of their identity.
Ethics & Evidence in Medical Debates: The Case of Recombinant Activated Factor VII
Authors: Ghinea Narcyz , Lipworth Wendy , Kerridge Ian , Little Miles , Day Richard O.
Published: October 2014

While ethics and evidence‐based medicine are often viewed as separate domains of inquiry and practice, what we know influences what we can ethically justify doing, and what we see as our moral obligations shapes the way we interpret evidence. The boundaries between the moral and epistemic spheres become particularly blurred when the health of people is at stake and even more so when no “officially” recommended medical intervention is available to help a patient in need. The treatment of major hemorrhages using recombinant factor VIIa (rFVIIa), which was originally approved under orphan drug legislation to treat hemophilia, is a case in point.

Following reports in the late 1990s that rFVIIa was success­fully used to stop bleeding in gunshot trauma, there was much excitement about its potential to help patients with uncontrolled bleeding in other clinical settings, leading to wide‐spread off‐label use of the drug. In recent years, new evidence has raised questions about the off‐label use of rFVIIa for severe bleeding. Nonetheless, while some clini­cians are now adamantly opposed to prescribing rFVIIa for massive bleed­ing, many remain determined to continue the practice. This raises the question: why do clinicians have such variable responses to the same body of evidence?

We analyzed the debate around off‐label use of rFVIIa and character­ized its main conceptual features and tensions. We did not seek to provide a normative analysis as to whether the evidence supports the case for off‐label prescribing, nor did we try to provide a historical analysis of how attitudes and clinical practice have changed. Rather, we sought to make visible the moral and epistemic values underpinning stakeholders’ opinions and practices. On the basis of our analysis, which is described in this ar­ticle, we suggest that debates such as those surrounding rFVIIa will not be resolved simply by conducting more studies and that, therefore, there is also a need for conceptual and pro­cedural frameworks that more sys­tematically incorporate values into clinical policy‐making.
Neuroimaging:Beginning to Appreciate Its Complexities
Authors: Parens Erik , Johnston Josephine
Published: October 2014

For over a century, scientists have sought to see through the protective shield of the human skull and into the living brain. Today, an array of technologies allows researchers and clinicians to create astonishingly detailed images of our brain's structure as well as colorful depictions of the electrical and physiological changes that occur within it when we see, hear, think and feel. These technologies—and the images they generate—are an increasingly important tool in medicine and science.

Given the role that neuroimaging technologies now play in biomedical research, both neuroscientists and nonexperts should aim to be as clear as possible about how neuroimages are made and what they can—and cannot—tell us. Add to this that neuroimages have begun to be used in courtrooms at both the determination of guilt and sentencing stages, that they are being employed by marketers to refine advertisements and develop new products, that they are being sold to consumers for the diagnosis of mental disorders and for the detection of lies, and that they are being employed in arguments about the nature (or absence) of powerful concepts like free will and personhood, and the need for citizens to have a basic understanding of how this technology works and what it can and cannot tell us becomes even more pressing.
Brain Images, Babies, and Bathwater: Critiquing Critiques of Functional Neuroimaging
Authors: Farah Martha J.
Published: October 2014

Since the mid‐1980s, psychologists and neuroscientists have used brain imaging to test hypotheses about human thought processes and their neural instantiation. In just three decades, functional neuroimaging has been transformed from a crude clinical tool to a widely used research method for understanding the human brain and mind. Such rapidly achieved success is bound to evoke skepticism. A degree of skepticism toward new methods and ideas is both inevitable and useful in any field. It is especially valuable in a science as young as cognitive neuroscience and its even younger siblings, social and affective neuroscience. Healthy skepticism encourages us to check our assumptions, recognize the limitations of our methods, and proceed thoughtfully. Skepticism itself, however, also must be examined.

In this article, I review the most commonly voiced criticisms of functional neuroimaging. In the spirit of healthy skepticism, I will critically examine these criticisms themselves. Each contains at least a kernel of truth, although I will argue that in some cases the kernel has been overextended in ways that are inaccurate or misleading.
Public Trust and Institutional Culture
Authors: Capron Alexander M. , Hurley Elisa A. , Davis Amy L.
Published: October 2014

Biomedical and behavioral research is a complex, multidisciplinary, and highly varied enterprise with but a single goal: to produce and disseminate knowledge about the causes, effects, prevention, diagnosis, and treatment of human illnesses and impairments. Success requires public trust in the process. When that trust has been shaken (or worse), the response has been to establish offices to exercise oversight of the various actors and to require them to adhere to regulations that specify, with various levels of detail, what they may or may not do.

The two regulatory frameworks examined in this report by Barbara Bierer and Mark Barnes began separately, provoked by different scandals and abuses of public trust.
Obesity, Liberty, and Public Health Emergencies
Authors: Herington Jonathan , Dawson Angus , Draper Heather
Published: October 2014

Widespread obesity poses a serious challenge to health outcomes in the developed world and is a growing problem in the developing world. There has been a raft of proposals to combat the challenge of obesity, including restrictions on the nature of food advertising, the content of prepared meals, and the size of sodas; taxes on saturated fat and on calories; and mandated “healthy‐options” on restaurant menus. Many of these interventions seem to have a greater impact on rates of obesity than does simply providing information about health risks and healthier lifestyles. The more interventionist policy options have, however, been implemented only slowly, in large part because of criticisms that they are unjustified infringements on the liberty of consumers. Food industry groups, free‐market think tanks, and the popular press regard measures that incentivize or penalize particular food and lifestyle choices as unjustifiable state regulation of purely self‐regarding behavior.

To counteract the liberty‐oriented position, those who favor a more interventionist role for the state have recently argued for labeling obesity as a public health emergency. By labeling obesity as a public health emergency, policy‐makers could override concerns about individual liberty in order to pursue more interventionist policies designed to guide consumer choices toward healthier lifestyles. In this paper, we argue that, contrary to initial appearances, obesity possesses some of the morally relevant features of public health emergencies, though we do not argue that it actually constitutes one.
Identity or Behavior: A Moral and Medical Basis for LGBTQ Rights
Authors: Solomon Andrew
Published: October 2014

The progress of lesbian, gay, bisexual, transsexual, and queer rights entails the erosion of prejudice, and erosion is a slow process. Much press accrues to the dramatic advancement of gay marriage, but that progress reflects decades of committed activism that antedate the sea change. Social science, physical science, politics, philosophy, religion, and innumerable other fields have bearing on the emergence of healthy LGBTQ identities. The field of bioethics is implicated both in revolutionizing attitudes and in determining how best to utilize such ameliorated positions. For decades, the debate around homosexuality has centered on whether it is a choice or an inherent quality. A growing segment of the population believes that gay people are “made that way” and therefore do not deserve to be treated with the prejudice they might warrant if they had simply elected what others resisted. In effect, they are like disabled people, who can't help the challenges they face, and unlike murderers, who could choose not to kill.

Anti‐gay arguments tend to hinge on a view of gayness as a behavior; the liberatory ones, on gayness as an identity. A behavior can be avoided; an identity is integral and therefore warrants acceptance—or even celebration. People have a right to their identities, even if they have the capacity to act out other, different identities. Bioethics is the field in which this distinction between gay acts and a gay self may be argued most directly.
Are Gay and Lesbian People Fading into the History of Bioethics?
Authors: Murphy Timothy F.
Published: October 2014

In many ways, we live in propitious times for gay and lesbian people. In 1996, the Supreme Court struck down Colorado law prohibiting any kind of protected status based on sexual orientation. In 2003, the Supreme Court held that states may not criminalize sexual conduct between consenting adults of the same sex in private, so long as no money changes hands. In 2010, the Congress repealed the “Don't Ask, Don't Tell” policy that excluded openly gay men and lesbians from military service. In 2013, the Supreme Court struck down key elements of the Defense of Marriage Act that prohibited any federal recognition of same‐sex marriage. Most states do not allow same‐sex marriage, but more and more states are joining the fold. Likewise, most U.S. states do not forbid discrimination based on sexual orientation, but the number that does is increasing. Arguably, no other social minority has made as much legal progress in so short a time.

Despite these advances, the story of gay and lesbian people and the law is not yet finished, and the meaning of homosexuality for bioethics is still being written too. Concerns about gay and lesbian people remain important to bioethics in key domains, especially in seeing to the conferral of optimal health care benefits and in sorting through the priorities and social effects of research. Progress in these domains still involves lifting certain burdens of medical and social misjudgments about same‐sex attraction.
Medicine and Making Sense of Queer Lives
Authors: Nelson Jamie Lindemann
Published: October 2014

As practiced, medicine bumps along with the rest of us, doing its level best to cope with the contingencies of this often heartbreaking world. Yet it's a commonplace that much of medicine's self‐image, and a good deal of its cultural heft, come from its connection with the natural sciences and, what's more, from a picture of science that has a touch of the transcendental, highlighting the unmatched rigor of its procedures, its exacting rationality, and the reliability of its results.

In contrast, the very idea of “queer” carries with it a little taste of the uncanny. What we're inclined to label queer resists understanding, not so much because it's too complicated, but because it tends to be too slippery to capture neatly in our conceptual nets—that queer ache in your side, for instance, or your partner's queer notion of doing laundry. The outmoded use of “queer,” as a way to refer disparagingly to gay people, carried similar uncanny connotations: the unnatural, the perverse.

One might think, then, that the reclamation of “queer” as an umbrella term referring to the lesbian, gay, bisexual, and transgender spectrum has a pleasing depth to its irony—not only does it wrench the customary direction of evaluation conveyed by the word from condemnation to celebration, but it also hints that what you find comprehensible depends a good deal on who you are and where you're standing. What from the perspective of many heterosexual and cisgendered people may seem opaque, exotic, threatening—erotic love directed toward someone with the same kind of body you have, lives lived in ways that challenge the immutability of birth‐assigned gender—are to LGBT folk not uncanny at all, but as familiar as breathing.

I like this conceit, but alas, it is too simple. It slights the variety of difficulties associated with making sense of queerness that can vex deeply thoughtful people of undoubted good will—as I found out some years ago when I first talked about my efforts to understand my own transgender identity with a ferociously intelligent, highly sophisticated friend.
Hormone Treatment of Children and Adolescents with Gender Dysphoria: An Ethical Analysis
Authors: Abel Brendan S.
Published: October 2014

In the context of transgender health, most people are not comfortable with allowing a twelve‐year‐old child with gender dysphoria to elect to undergo gender reassignment surgery. The likelihood is too high that the child would be unable to fully comprehend the scope of a decision that carries significant, permanent consequences, particularly because the decision to surgically change gender is based upon a conception of gender that can fluctuate during adolescent years. Conversely, however, most people would not contend that this fluidity is reason to wholly deny certain medical care such as hormonal treatments to transgender youth, a demographic with extremely high rates of violent behavior, self‐harm, and suicide. This paper will explore ethical considerations to this emerging debate of what therapeutic options should be offered to transgender children and adolescents.

Pediatric endocrinologists have been treating gender dysphoric adolescents with puberty‐suppressing drugs and, to a lesser extent, with cross‐sex hormone therapies for more than twenty years. Clinicians and thought leaders have mentioned ethical components of this emerging practice in the few cohort studies and clinical review articles about the subject. However, ethics have generally been a secondary consideration in the medical academic literature. In this paper, I will provide a brief overview of the practice, summarize the current research on hormone treatment for transgender minors, and provide an ethical analysis of the practice.
Writing on the Margins
Authors: Kaebnick Gregory E.
Published: October 2014

When a set of articles or essays in the Report revolves around some common theme, we have planned it that way only about half the time. With this issue, I realized halfway through its assembly that we would have two pieces on what one of the articles calls “the woman question.” Quite late in production, I realized that these two pieces were themselves part of a broader theme: several of the columns also address the health care of people who are socially marginalized in one way or another.
What's in a Number?
Authors: Weisberg Daniel
Published: October 2014

“I'm a six,” Freddy Lowell says after a thoughtful pause. Seven milligrams of Dilaudid, a potent narcotic pain reliever, is already being pushed into a port in his chest by a visibly busy nurse. She registers his pain score with a grunt. She will be back in two hours to ask for an updated number. At some point during this time, his pain will creep back, so strong it will render him mute. When the nurse next inquires, he will respond with seven fingers, his face buried in his pillow.

The Numerical Rating Scale has been a mainstay of clinical care since the late 1990s, when pain came to be referred to as the “fifth vital sign” alongside temperature, blood pressure, heart rate, and respiratory rate. But while the first four are measured with precise objectivity, pain is nuanced, complex, and personal, so much so that Freddy will quickly chastise anyone who tries to empathize with his plight. “Nobody knows what it's like,” he says decisively.
Glossed Over
Authors: Kirschner Kristi L.
Published: October 2014

I open the glossy cover of my alma mater's alumni magazine. Images of new frontiers in medicine abound—state‐of‐the‐art research buildings and the latest in high‐tech hospital innovations. Nestled among the articles on cutting edge medicine is a feel‐good story about medical students. The article profiles volunteer medical students and their uninsured patients with chronic health conditions. At one site, they are touted as providing “the only medical care.” Indeed.

I think back to my medical student days and cringe.
Prenatal Whole Genome Sequencing
Authors: Donley Greer , Hull Sara Chandros , Berkman Benjamin E.
Published: October 2014

Whole genome sequencing is quickly becoming more affordable and accessible, with the prospect of personal genome sequencing for under $1,000 now widely said to be in sight. The ethical issues raised by the use of this technology in the research context have received some significant attention, but little has been written on its use in the clinical context, and most of this analysis has been futuristic forecasting. This is problematic, given the speed with which whole genome sequencing technology is likely to be incorporated into clinical care. This paper explores one particular subset of these issues: the implications of adopting this technology in the prenatal context without a good understanding of when and how it is useful.

Prenatal whole genome sequencing differs from current prenatal genetic testing practice in a number of ethically relevant ways. Most notably, whole genome sequencing would radically increase the volume and scope of available prenatal genetic data. The wealth of new data could enhance reproductive decision‐making, promoting parents' freedom to make well‐informed reproductive decisions. We argue, however, that there is potential for prenatal whole genome sequencing to alter clinical practice in undesirable ways, especially in the short term. We are concerned that the technology could (1) change the norms and expectations of pregnancy in ways that complicate parental autonomy and informed decision‐making, (2) exacerbate the deleterious role that genetic determinism plays in child rearing, and (3) undermine children's future autonomy by removing the option of not knowing their genetic information without appropriate justification.