Eubios Journal of Asian andInternational Bioethics
EJAIB Vol. 28 (5) September 2018www.eubios.info
ISSN 1173-2571 (Print) ISSN 2350-3106 (Online)
Official Journal of the Asian Bioethics Association (ABA)

Copyright ©2018 Eubios Ethics Institute(All rights reserved, for commercial reproductions).

Contents

page
Editorial: Extending Humanity
135- Darryl Macer
Transhumanism Challenge to Bioethics
137- Ann Boyd
Perspectives on the Ethics of Maternal Somatic Support
141- Kouy BunRong
Pakistani Parents Understand Informed Consent but
not Assent: A Pilot Study
143- Sumaira Khowaja-Punjwani
Cybersecurity Challenges in the Implementation of a
Hospital Management Information System
151- Penggalih Mahardika Herlambang, Rani Tiyas
Budiyanti, Andi NoviantoRole of Ethics in Hospitality and Tourism Industry 154- Amrit Kumar Dhimal
Ethical Challenges of the Zika Epidemic154- Ann Boyd, Caylee Marie Winpigler, Enrique Figueroa
Global Challenges in Sustainable Public Health158- Ann Boyd, Jeni Lacko, Grace Weaver, Juliet Traini and
Jenna Frick
Book Review of: International Biolaw and Shared EthicalPrinciples: Universal Declaration on Bioethics and Human
Rights163- Alexander Waller
ABA Renewal and AUSN Update
165

Editorial: Extending Humanity- Darryl Macer
Email: darryl@eubios.info
Are you happy the way that you are? How could you
be improved? One of the visions of the 21st century isthat this will be a century extending the meaning of what
it is to be human. We can reflect on the meaning of
humanity in many ways. Let us start by asking what itmeans to you to be human? Is it defined by your DNA?
Can a computer become human? Can a chimpanzee
become human?
Is humanhood defined by holding some paper which
describes you as a citizen of one country? There aremany stateless people in the world who are denied
identity documents, and with the growing number ofrefugees in the world unless we have universal
citzenship the number will increase. Not only are there
cases that a person cannot get a document to call them ahuman citizen of a country, it is still official language inthe United States of America to call non-citizens, aliens.
Non-citizens have an alien registration number, andaliens are divided into legal aliens and illegal aliens. This
was also a term borrowed by Japan in the 1990s, whichthen dropped this term.
Is it defined by wearing clothes? The clothes market
for cats and dogs is rapidly expanding, with many clothes
available for cats (See Figure 1).

Editorial address, and all correspondence to:Prof. Darryl Macer, Ph.D., Hon.D.
President,
American University of Sovereign Nations (AUSN)
https://ausovereignnations.org
Email: darryl@eubios.info
EJAIB adopts and complies with the Committee on
Publication Ethics (COPE) Publication ethics andmalpractice policy. All potential authors shouldhave read these guidelines and by submission of anarticle for publication you acknowledge that you
have complied with this policy. Violations will behandled in proportion to the intention andseriousness of the violation.
Registered address of EJAIB: P.O. Box 16 329,
Hornby, Christchurch 8441, New ZealandFigure 1: Pet clothes shop in Japan
So many animals have been treated as persons even
before the clothing craze. There can be some bioethicalarguments to support clothing, for example extreme cold,or booties to avoid getting cut feet from broken glass on

136

Eubios Journal of Asian and International Bioethics 28 (September 2018)beaches. Horse shoes have been used for centuries, andbreeding rams have been fited with false teeth so they do
not starve when their teeth wear out.
Is humanhood defined by attending school? Pet
schools are places for pets to learn many skills, and thelanguage of instruction is usually that of the local humanlanguage. If we defined by our parents, being raised byhuman parents, than that is something true of pets aswell. The idea of social order, and discipline isassociated with what it means to be “civilized”, and in aplanet with a burgeoning population discipline isessential. Too much law and order has been an
antithesis to a vision of situation ethics where love
determines what we do, and our moral limits.
The ideas of transhumanism usually refers to going
beyond current human capabilities to create a humanbeing that is enhanced in some way (Boyd, 2018). There
have been many papers that discuss the ethical, legal andsocial implications of genetic enhancement, and inresearch I have conducted since 1991 we can findwidespread support for genetic enhancement, especiallyin developing countries in Asia (Macer, 1994).
The concept of enhancement is not something that is
only targeted through genetics and diet - educational andsocial systems have been engineering persons overmillenia. All attempts at education to transform ourmind as we grow up, are efforts at enhancement thatmost societies support.
Racism, sexism and harmful discrimination remain
principal ethical challenges for the development ofsociety. Despite efforts to reduce sexism, in the past
several years we have seen the remergence of racist talkand thinking in countries such as the USA. The voices ofpolitical leaders and some extreme media are acting
counter to the ethical evolution of human society to be
one free of discrimination.
We certainly need more moral beings, and religions
have not always helped this. John Bowker (2018) wrote:“Religion Hurts: Do religions cause more harm than
good?” The message of love and moral accountability are
essential in the spirituality of morals. Boyd explores thearguments for and against transhumanism, taking aholisitc perspective. Only time will tell if our future
human experiment with genetic engieering will be any
more successful than efforts through religion andinternational human rights law have been, in making us
any more “human?” than mere selfish “tribal” warriors.
This use of tribal is not written as a derogatory term forindigenous persons, who have coexisted across theworld despite attempts to globalize us all into one
human order. In spaces that have resisted colonisationthat was usually enforced by military might, we can stillfind thousands of population groups. The progress ofenlightenment as an experiment is mixed in its outcomes,
with many atrocities having been commited in the nameof social progress.
The emergence of human rights law and greater
knowledge of each other are successes. However the
existence of rapid communication across the globe, does
not mean that we will always be peaceful. There werecelebrations of the first trans-Atlantic telegraph cable,with claims that this would be the end of war. Soon
however, we realised that it also matters what we say,and how we say it. We need a peaceful and loving
communication with listening between people.
The second paper in this issue refers to one exampleof technological transhumanism – keeping dead orvegetative maternal bodies alive as fetal incubators(Kouy, 2018). Although this practice can be consistent
with the interests of a mother or family to propagate thenext generation, it also is so easy to be viewed as acommodification of a living body for the needs ofanother. If we extrapolate this idea even further we canquestion the meaning of society where people labour forothers, some die in battle to protect nations, some work
like slaves to make cheap consumer goods, coal miners
die to produce electricity, and so on. Most people do notchoose to work with these risks, but the economic
system forces them to do this.
Bioethics as love of life is a vision that all life will love
to live, and love other’s life. I still believe in this utopian
dream as the image of what human beings should andcan become. Making choices starts as children, as
discussed in the paper by Sumaira Khowaja-Punjwani inthis issue of EJAIB. We need to recognise the ontologicalevolution of assent to consent, and to reasoned choices,in developing our humanity. Until recent times nochildren had freedom of choice, and we are starting to
see this emerge.
Herlambang et al. review some of the cybersecurity
challenges in a Hospital Management Information
System. The protection of personal data against humanerror through a well developed information systemshould also be balanced with the security concerns toprotect data. Amrit Dhimal provides some of the issues
faced in the tourism and hospitality industry, which isone of the ways that humankind are brought together.
Lastly there are two papers on public health issues
from Ann Boyd and colleagues, firstly on the ethicalchallenges of the Zika epidemic , and the second moregenerally on global public health. Although we may
pursue the development of transhuman beings we would
do a much more ethical and better job of making themost out of our fragile lives if we lived healthily inharmony with nature and all of life.
Thus from the discussion of reductionism in the firstarticles, we move to consider a more holisitc approach tolife and health. It mirrors a transition in consideration of
the central dogma of molecular biology that we saw in
the 1980s, with DNAàRNAàProtein, that has now
moved to DNAßàRNAßàProtein. While we havephysicially engineered many organisms to produce food,medicines and other products, we still have failed todeliver many proven enhancement to all human beingson our planet to have a good life. The universal love ofothers is the greatest extension of humanity that wemight ever be able to do. Let us try harder.

References

Bowker, John. 2018. Religion Hurts: Do religions cause more
harm than good? London: SPCK.
Boyd, A. 2018. “Transhumanism Challenge to Bioethics”, EJAIB
28(5): 137-140.
Kouy, B. 2018. “Perspectives on the Ethics of Maternal Somatic
Support”, EJAIB 28(5): 141-143.
Macer, DRJ, 1994. Bioethics for the People by the People.
Christchurch, N.Z.: Eubios Ethics Institute.

Eubios Journal of Asian and International Bioethics 28 (September 2018)

Transhumanism Challenge to
Bioethics- Ann Boyd, Ph.D.
Professor of Biology, Hood College, 401 Rosemont Ave,
Frederick, MD 21701 USA
Email: boyda@hood.edu

Introduction
Transhumanism is a philosophy of life seeking
continuation and acceleration of the evolution of
intelligent life beyond its current human limitations bymeans of science and technology. Valuing reason, science,progress and longevity, transhumanism is a form of
Enlightenment Humanism reliant on technology. Threeareas - genetics, nanotechnology and robotics, receive
the most attention as the path to enhancement. The
excitement about the potential to change the human
blueprint reflects the potential to relieve genetic
disorders and improve human quality and quantity oflife. Advocates of transhumanism focus on extended
enhanced life as an autonomous choice. The reasoning isthat the enhanced will have greater abilities that would
enable them to create ways to benefit the rest of society.
Alternatively, the distinctions between the enhanced andunenhanced would grow until species identity becomes
questionable. Will the transhuman no longer recognize
ordinary humans as persons or neighbors but a distinct
species? Transhumanists claim that technologicalinnovations of the past have strongly improved humanlife and wellbeing. The agricultural revolution enhanced
nutrition and food supply but millions still starve in ourworld. Today the availability of cell phones and theinternet connect people around the world making
communication easy and yet wars and conflicts continue.
If it were possible to increase sympathy and altruism bymaking genetic changes to the human genome would it
be a universal good?
Bioethics emerged in theintersection of unprecedented challenges of medical
technology. This paper will explore some ways bioethics
could answer the transhumanist challenge.
Radical enhancement“The Principles of Extropy” was published in 1990 as atranshumanist philosophy in which extropy is defined as“the extent of a living or organizational system’s
intelligence, function, vitality, capacity and drive for
improvement” (More, 2003). Rational thinking includes
questioning all precepts of faith or tradition, andexperimenting and challenging evolutionary progress.
By intervening with technologies that will enhance
intellectual acuity, and longevity without the negative
aspects associated with aging, human beings will survive
and thrive in this putative posthuman world. It is hard
to imagine anyone freely resisting all the wonders of
longer lives with enhanced intellectual and creative
capacities.
Proponents of radical enhancement include
representatives from different disciplines, such as Ray
Kurzweil(technologist),
AubreydeGrey(psychotherapist), Nick Bostrom (philosopher) andJames Hughes (sociologist). Suppose you were offered
the chance to boost your intellect to the extent that you

137

could think like Einstein, compose like Mozart and live
400 years without the negative aspects of aging. Would
you want to be an enhancement subject? This sounds
wonderful, so who could object? How many peers would
you have at 400? How might the way we value lifechange? The talent spectrum of human capacity isdiverse; will transhumanism make it more so, or might
technology erase limitations now separating persons?
(Bostrom, 2013).
Reaching for radical enhancement through genetics,
nanotechnology and robotics (GNR) to overcome current
human limitations is the goal of radical enhancement. If
capacities far exceed today’s “normal human” would it
lead to separate species of being? Nicholas Agarsuggests that the posthuman will not be of the same
species as Homo sapiens (Agar, 2010). The humangenome sequence is at hand and genes are being
matched with location and function. This progress ingenetics offers the opportunity to correct mistakes thatcause disease and limit life. If mistakes can be corrected,
then why not go the additional step to enhance human
functioning?
Nanotechnology offers a means of humantransformation using microscopic nanobots, introduced
into the human body to purge arteries of cholesterol, fix
glitches in the memory, carry a drug, or block a
dangerous gene’s expression. With the development of
optical and quantum nanocomputers, amplification of
intelligence could expand cognitive capacity of thecurrent normal human. How might enhanced capacities
help solve complex problems, and what impact might
they have on human identity? The time is now for open
debate and deliberative dialogue about all thetechnologies that fuel the enthusiasm of thetranshumanist movement.
Ethical Responses
Two ethical objections to transhumanism are that it
reduces human nature to a biology/genetic system thatcan be engineered and overly emphasizes human reason.
Even if the human condition can be improved throughreason, science and technology, it is important to retain
the importance of the relational capacity of humanpersons. The posthuman projects of transhumanism
represent ideas about human development in atechnological age. They represent the narrow view ofhumanphysicality
subjecttotechnologicalimprovements, and invite careful thoughtful reflection
on the relationship between humans and theirenvironments, artifacts and tools in a digital andtechnological age. The social improvement hoped forrequires equal access to technology, a concern for thewider community which puts autonomy in tension withsocial justice (Garner, 2011).
Savulescu (2005) makes the point that in order toprevent harm, moral normalcy is not good enough. Whatis needed is a better cognitive capacity to solve complex
ethical issues. “Our own species-specified natures are arich source of much of the thoroughly unrespectable andunacceptable-susceptibility for disease, murder, rape,
genocide, cheating, torture, racism” (Bostrom, 2005). If
this is the perspective of human nature, it is easy to see
why mere humans need improvement and why
technology is the hoped for means to a better humanity.

138

Eubios Journal of Asian and International Bioethics 28 (September 2018)

I wonder if this improvement/enhancement will be
aimed at the common good or individual good? Further I
question if the gap between knowing what is right andgood and acting accordingly will be bridged any better
than a person well educated with a well-tuned moral
compass. Engaging with others in deliberative dialogue
about the values and virtues of overcoming hardship,
shaping a life that makes the most of the limits, strengths
and weaknesses that define us, is the moral enterprise
today. What it will become in a posthuman world is hard
to imagine. Unless the posthuman is equipped with more
empathy and compassion than the contemporary
executives in businesses such as pharmacology, making
improvements available to everyone everywhere will beslow if it is a priority at all. In the interim, the gap
between the enhanced and the unenhanced may create
great obstacles to maintaining communities, or
respecting the dignity of all persons.
The God machine metaphor shows us that it may bepossible to implant a device in the human brain thatwould inhibit one from harming another person (Harris,2014). If universally applied, it would reduce or
eliminate violence and wars. Do individuals have a
choice? Harris argues that there are times when aordinarily wrong action would be considered good, that
there are times when a person should act to save a life bytaking aggressive – even hostile action. For example, inorder to save the life of an accident-victim, a limb may
need to be amputated. This is a harm, generally speaking,but saving the life is a greater good. Moral philosophy
acknowledges that what is good or right is situation
sensitive. If hurting an agent about to do harm is not
finely controlled, the emergency rescue person might not
be able to save the accident victim. Another possibility isthat harming the environment by discarding waste
products along highways would be inhibited by themechanism and those who would take economic risks
that endanger the savings of many people, could be
stopped. Ethically, it should be a concern, who and how
the machine that seeks to control behavior isprogrammed.
Bold initiatives for large problems
Proponents are quick to point out that pastenhancements have not triggered speciation but havegreatly benefited humanity. The discovery of antibiotics,
sterile surgery, anesthetics, mood altering drugs,
vaccines, have improved quantity and quality of life forthe much of humanity. Yet, it is clear that everyone
everywhere does not enjoy the benefits equally. Ninety
percent of research and development is done in the“developed world” whereas 85% of the population livein “developing regions”. As the human population
approaches 8 billion, water scarcity and climate change
are more threatening than infectious diseases.
The patent system illustrates the winner take allapproach to distribution of human improvements.
Aiming to encourage innovation, intellectual property
protection for 20 years give license to companies tocharge exorbitant prices for their products. Pharma sales
in 2010 were $307 billion, with 21 new discoveries
making it to market out of 10,000 compounds tested.
The path to regulatory approval for a new drug is 12
years at a cost of $100 million - $1.2 billion (Ness, 2015).

This brief review of how we currently assure equitable
distribution of newly discovered drugs that are intended
to benefit human beings puts in perspective the claimthat “posthuman beings would no longer suffer from
disease, aging and inevitable death…by means oftechnology” (Moe-Lobeda, 2013).
The discovery of embryonic stem cells’ ability toreplicate in culture and differentiate into any type ofhuman cell opened the possibility of new therapies fortissue and organ repair. The first reports in 1998 createdpublic policy discussions, creation of new companies topursue the technology, and bioethical debates. The
questions asked were about unintended consequences of
unknown risks, juxtaposed with concern about the risks
of not pursuing the research on behalf of those who
suffer. For twenty years’ scientists have expanded thesearch for other sources of stem cells and sought ways ofgenerating specialized cells to treat disease. Regarding
each person as an end or goal of moral deliberation as
well as the focus of medical therapy confers dignity.
Millions of persons with neurological diseases such as
Parkinson’s could be served through regenerative
medicine. The mandate to love one’s neighbor means theinclusion of those who suffer from diseases. Justice
should look at the availability and access to regenerative
medicine, who benefits, who is at risk, and what it means
to have a preferential option for the disadvantaged.
Beneficence and justice support an affirmative answer tothe question of stem cell therapeutics (Peters et al.,2010). Can the same argument support pursuingenhancement?
If transhuman projects are successfully achieved, willbe they excessively expensive? If only a few can takeadvantage of their benefits expanding the economic andtechnological divide between regions of the world, we
will continue to fuel resentment and embattled
competition. Transhumanism may follow the path ofstem cell research. Proponents take the stance that
employing all our creative abilities for the relief ofsuffering is a human duty. In the process of creatingstem cell therapies, clinics without federal oversight andpatients desperate for treatment are vulnerable totechnological-hype and laissez-faire capitalism. The
progress of stem cell therapy development is promotedin the private sector, but the duty to ensure safe andeffective therapies in the U.S. is the duty of the Food andDrug Administration (FDA). The FDA web site offers
advice about how to know if a stem cell therapy isapproved or being studied under an investigational new
Drug Application (IND). They advise potential patients to
ask if the FDA has reviewed the treatment, and torequest facts or ask question if you do not understand(FDA website). The stem cell evolving story can be a casestudy of ethical assessment of technologies that promise
human improvement.
Neuroscience clues
Neurobiology shows that we humans are relational
beings, that we are nature co-operators and that thedevelopment of more complex Biosystems succeed only
through cooperation (Klein, et al., 2015). Will it make us
better neighbors? Globalization brings groups into
common space making it possible for us to recognize ourinterdependence and potential solidarity. Solidarity is a

Eubios Journal of Asian and International Bioethics 28 (September 2018)moral practice fundamental to a social and cultural
structure of relationships. Recognition of the other is acondition of moral and political membership, and shows
respect for human dignity. Right relationship is acondition of mutuality, interdependence, care andconcern for others and their flourishing. Solidarity isessential to counter the temptation for control and thecentripetal forces that obscure our interdependence andlead us to think that we can each build the place of ourown being. This does not negate the value of privacy orsolitude. Solidarity is not a competing principle but a
way of shaping sensibility to inform ethical principles
such as social justice. Practically speaking, solidarity
takes the posture of standing up for, standing up withand standing up as the other. Moral use of solidarity
teaches us to see health not as a personal achievement or
genetic lottery but one of mutual responsibility. The
quality of our collective health depends on an intricate
web of cooperation and interdependence (Jennings andDawson, 2015).
Enlightenment rationalism
Tranhumanist advocates claim a continuity with
Enlightenment rationalism and humanism, by promising
greater reasoning ability and more autonomy. Like
Renaissance Humanism, education and culture weremeans to improve human nature. Tranhumanist Max
More sees science-technology as the path to progress
holding firm an existential value of human life (More2003).
Philosophers of antiquity, Plato and Aristotle, usedideals as visionary and regulative of behavior rather thanachievable goals. Plato’s forms were aspirations that
directed the human life toward happiness and goodness.
Aristotle recognized that if we achieved the ideals ofperfect courage, justice, prudence, and perseverance wewould no longer be human. What separates humans
from the divine is an ontological gap. Transhumanists
want to “have it all” without sacrifice or suffering,
utopian happiness unlimited. Is it possible to have it allwithout cost and retain those values that currently
define the good? Or must values shift to accommodate
the perfected posthuman?
Proponents and opponents of transhumanism havecited Nietzsche’s Ubermensch (literaly translates asoverman and herein applied to both genders, as
overhuman). “Man is a rope, tied between beast andoverman – a rope over an abyss….what is great about
man is that he is a bridge and not an end” (Nietzsche,
1954, 14-15). Nietzsche’s overhuman is the ideal person,
not an eternal version of the human or a radicallyenhanced form, rather one that has attained mastery of
the will. Kaufmann interprets the overhuman as
sublimating ones impulses through the development ofcharacter (virtue) (Kaufmann, 1950).
To the transhumanist, improvements in IQ would
improve thinking, memory, and recall, thereby
improving the reasoning ability and enhancing
personhood. This reasoning relies almost exclusively on
personhood equating with reason “alone” and bypassing
the relational capacities, or defining the values thesesuper thinkers would posit (Aydin, 2017).
Without knowing what values the posthuman will
have it is difficult to predict what changes would occur

139

through a specific means to enhancement, such as germline engineering. To directly edit or engineer genes toavoid diseases is one ambition of human genetic
medicine, but the transhumanist agenda suggests going
beyond correcting harmful mistakes in the genome. With
the availability of CRISPR (clustered irregularlyinterspaced short palindromic repeats) and Cas9 (arecombinase) the potential exists to modify genetic
sequences at will. Liang et al. (2015) reported editing
human embryos to correct the beta-globin gene. The 86
edited embryos were not implanted, but used to evaluate
the specificity and safety of the technique: 71 survived
the manipulation and 54 had corrected sequences. The
scientists also documented unintentional mutations. The
reaction was swift within the US with National Instituteof Health (NIH) director, Francis Collins, saying that it isunethical to insert or modify sequences in the germline
when you don’t know the full consequences (Petre,2015).
Genetic engineering is taking on the challenge offinding ways to improve human functioning and relieve
suffering. Critics caution that some things will go wrong
in the beginning. Pragmatism leads us to take risks,favoring experimental therapies that follow the
trajectory of scientific evidence in cellular and animalmodel systems. The initiative to ‘do something about it’
rather than complain or leave the suffering to their fate,is to be proactive. Scientists and physicians who aim for
new goals have to be brave as they enter new, potentially
dangerous waters, as those who developed the first
vaccines were. Testing new therapies in a series ofcontrolled clinical trials is the path to new drugs andtherapeutics.
Somatic cell gene therapy has an imperfect record ingene therapy. Clinical trials aimed at reliving symptoms
by delivery of the missing gene or malfunctioning
protein have achieved notoriety when they have failed
and when they have succeeded (Misra, 2013). In anormal process, a new technique is evaluated in an
animal model, goes through a series of clinical trials forsafety and efficacy and is then adopted in standardpractice. When in vitro fertilization (IVF) became a way
to help infertile couples bear children, the UK
established national guidelines for its use, but in the USA,no universal healthcare system exists and no guidelines
were established. The consequence was that IVF clinics
multiplied in the private sector, making access to thetechnology unequal. The current cost of one cycle of IVF
is $12,400 (about 22% of the average household annual
income). If gene editing with CRISPR follows a similar
path into private IVF clinics, the cost will select only thewealthy as potential clients. Correcting what Francis
Collins refers to as “typos in the book of life” leads one toimagine that “editing” is an ordinary therapeutic tool.
Everyone wants genetically healthy children but dare weassume what qualifies today will suit the posthuman?
(Boyd, 2017).
Porter posits a values problem for transhumanism
which concerns how current humans and future
posthumans will value health, “normal” intelligence, andlongevity. Pointing to the potential conflict over values,
would it be possible to maximize beauty and equality
simultaneously? “Transhumanists would use technology,
or allow and encourage individuals to use technology, to140

Eubios Journal of Asian and International Bioethics 28 (September 2018)

make everyone equally beautiful – but this utopiantranscendence of the contrastive nature of beauty andequality vis-à-vis each other is conceptually incoherent”(Porter 2017). How will beauty be recognized if allpossess it?
Technology is by design and intent for the use ofpeople, for their benefit (Boyd 2016). Human becoming
is a way that humans express creativity, but technology
per se does not have its own becoming innate to itself.
Humans become but technology does not. Technology
changes through human action, therefore humans are
the agents of change. Technology demonstrates ourrelationship with the world, reflects our desires, will,
and values. Robotics, nanobots, gene editing, all intended
to improve or enhance humans hold great hope for
improving the length and quality of our lives. It is also
possible that technology is a means to the will to power,
unknown whether it will be used for good or ill effect(Boyd, A. 2017).
Conclusions
What is at stake is a new understanding of what itmeans to be human. By the second half of this new
century, there may be no clear distinction between
human and machine intelligence. On the one hand, wemight have biological brains vastly expanded throughdistributed nanobot implants. On the other hand, we
could have fully nonbiological brains that are copies ofhuman brains, albeit also vastly extended. And we will
have a myriad of other varieties of intimate connection
between human thinking and technology it has fostered
say the transhumanists.
To do what we ought is a universal challenge forhumans. It is evident to our moral natures that seeing apoor person begging for food or a sick person pleadingfor health care or a refugee seeking a safe place to livethat those people are our neighbors, no more and no lesshuman than we are. When we experience others coming
into our presence bearing legitimate claims on us, how
we treat them is a testament to our morality andcommon humanity (Boyd, 2014).
Bioethicists responses should include the following:
Justice requires procedures that allow all social
members to participate – to have access to basic human
goods necessary for life, well-being and the society inwhich we live – to share relationships among peoples
and cultures. Taking a relational view of human nature
as a dynamic and forward moving effort, humans cantransform nature and depend on it for their life. The
common good is reinforced by the virtue of solidarity
and the care for those marginal in any society.
Transhumanism tends to speak of the person
mechanistically, suggesting that better bodies, longer
lives, super intelligence, moral enhancement can be
manipulated at will. It is true that we face global
problems that need collaborative and cooperative
solutions. This world and all who live in it matter. This isaffirmed by unity in diversity. In essence, we should
learn to be human before we seek to be posthuman.

References

Agar, Nicholas, 2010. Humanity’s End: Why we should Reject
Radical Enhancement, Cambridge, MA, MIT Press.
Aydin, C. 2017. “The posthuman as hollow idol: A Nietzschean
critique of human enhancement.” The Journal of Medicine
and Philosophy 42: 304-327.
Bostrom, N. 2013. “Why I want to be a Posthuman when I growup, pp 28-53, IN The Transhumanist Reader: Classical andContemporary Essays on the Science, Technology, andPhilosophy of the Human Future, (eds) M. More and N. VitaMore, Oxford UK, John Wiley & Sons, Inc.
Boyd, A. 2014. “Theological and Philosophical Partners for
Human Rights,” Eubios Journal of Asian and International
Bioethics 24: 7-10.
Boyd, A. (2016) Science and Ethics in Dialogue: EthicalResearch Conduct and Genetic Information Application IN
Colloquium Series on the Genetic Basis of Human Diseases#7, (ed) Michael Dean, Morgan & Claypool Life Sciences.
Boyd, A. (2017) “Better Humans and evolutionary nudge,”
Eubios Journal of Asian and International Bioethics 27: 116121.
Garner, S. 2011. “The Hopeful Cyborg” IN Transhumanism andTranscendence: Christian Hope in an Age of Technological
Enhancement (ed) R. Cole-Turner, Washington, DC,
Georgetown University Press.
Harris, J. 2014. “How Narrow the Strait: The God Machine andthe Spirit of Liberty,” Cambridge Quarterly Healthcare Ethics
23:247-260.
Jennings, B. and A. Dawson, 2015. “Solidarity in the moral
imagination of bioethics,” Hastings Center Report 45: 31-38.
Kaufmann, W. 1950. Nietzsche: Philosopher, Psychologist,
Antichrist. Princeton, NJ: Princeton University Press, p312.
Klein, E. T. Brown, M. Sample, A. Truitt, S. Goering. 2015.
“Engineering the Brain: Ethical issues and the Introductionof Neural Devices,” Hastings Center Report 45 (6): 26-35.
Liang, P., Y Xu, X. Zhang, C. Ding, R. Huang, Z. Zhang, J. Ma, C.
Zhou, J. Huang (2015). “CRISPR/Cas9-mediated gene editingin human tripronuclear zygotes” Protein and Cell 6(5): 363372.
Misra, S. 2013. “Human Gene Therapy: A Brief Overview of the
Genetic Revolution” Journal of the Association of Physiciansof India (JAPI) 61: 127-133.
Moe-Lobeda, C. 2013. Resisting Structural Evil: Love as
Ecological-Economic Vocation, Minneapolis, Fortress Press.
More, M. 2003. The Principles of Extropy, ver. 3.11. The
Extropy Institute (on line) http://extropy.org/princples
accessed August 2018.
Ness, R. 2015. The Creativity Crisis: Reinventing Science toUnleash Possibility, Oxford University Press.
Nietzsche, F. 1954. Thus Spoke Zarathustra. Translated by W.
Kaufmann. NY: Viking Penguin Inc.
Peters, T., K. Lebacqz, G. Bennett. 2010. Sacred Cells? Why
Christians should support Stem Cell Research, New York:
Rowman and Littlefield Publishers.
FDA
website:https://www.fda.gov/ForConsumers/ConsumerUpdates/uc
m286155.htm. Accessed September 2018.
Savulescu, J. 2005. “New Breeds of Humans: The Moral
Obligation to Enhance,” Ethics, Law, and Moral Philosophy of
Reproductive Biomedicine 1 (1): 36-39.
Petre, I. 2015, “Future Generations and the Justifiability ofGermline Engineering,” The Journal of Medicine andPhilosophy 42: 328-341.
Porter, A. 2017 “Bioethics and Transhumanism,” Journal of
Medicine and Philosophy 42:237-260.

Eubios Journal of Asian and International Bioethics 28 (September 2018)

Perspectives on the Ethics ofMaternal Somatic Support- Kouy BunRong
PhD Student, Graduate Institute of Philosophy, National Central
University, Taiwan, R.O.C
Email: bunrong.k@gmail.com

Abstract
Maternal somatic support after brain death occurs
when a brain-dead patient is pregnant and her body is
kept alive to deliver a fetus. The moral controversy
cracks into two different extreme parties which one
praised the worthiness on the dignity of dying motherand the other insists the rights to life of the unborn child.
In other words, the moral status of the brain-deadmother and that of the fetus are of ethical question. This
paper aims to resolve the conflicting point-of-views in
the matter of maternal somatic support, suggesting thatthe key factor should be placed on mother-childrelationship rather creating a separated clash between
the two.
Keywords: maternal somatic support, brain-dead, rights
to life, dignity, moral status
1. Introduction
Cases of brain-dead pregnancy1 have been reported
from time to time on the news worldwide. For instance,in October 1992 a young woman died in a car accident.
She was 13 weeks pregnant and her fetus appeared to beunhurt, so a decision had to be made: should themother’s body be artificially supported in order to givethe fetus a chance to live? (Anstötz, 1993). Similar cases
can be found worldwide. Masaki et.al (2016) summed up
brain-dead pregnancy cases occurring. For instance, inJapan, three brain-dead pregnant women’s cases werereported in 2014. It was reported that these women
were brought to a university hospital and became braindead. Two of the three women had delivered their babies.
One family wanted to save the fetus, the other remained
uncertain until the contraction of the woman began, andthe third had no desire for the baby in the first place. In
Canada, a Canadian woman was just 22 weeks pregnant
when she was declared brain dead. Doctors in charge
kept her alive at her husband’s request so that theirunborn baby would have a better chance of survival. She
was on life support for six weeks before she gave birth toher child. In Hungarian, the woman was 15 weeks
pregnant and she was on life support for 3 months
before she delivered a healthy baby boy. In the USA, apregnant woman who lapsed into a brain-dead state wasremoved from life support after a hospital complied witha judge's order to disconnect her from the machines
keeping her alive. Her husband wanted to have his wife
die with dignity. The fetus, which was at 23 weeks'
gestation, was not delivered.

1 ‘The first successful attempt to bring a postmortem
pregnancy to term is generally taken to be the American one
reported by William P. Dillon and colleagues at Buffalo, New
York, in February of 1981, a case in which a 26-week-old infant
was delivered 5 days after its mother was pronounced brain
dead.

141

Up to recently, “brain-dead” has been the medical
criteria to announce one’s legal death2. Yet announcingthat one died according to this criterion raises a numberof the controversies beyond simply those of organ
donation. In the case of brain-dead pregnancy, the issue
becomes more complicated. Should we regard that themother donates her womb to the fetus? While in thecase of organ donation, one might indicate one’s
preferences, should we assume that the mother would
indicate her willingness to save her baby? What if themother has no preference at all? Does exercising somatic
support to maintain the life of the fetus morally
impermissible?
The moral controversy ranges from two different
extremes – one which praises the worthiness on the
dignity of dying mother and the other insists the rights
to life of the unborn child. In other words, the moral
status of the brain-dead mother and that of the fetus arein conflicting situation. This paper aims to clarify the
conflicting point-of-views in the matter of maternalsomatic support or brain-dead pregnancy through thecriterion of moral status.
2. Using the Mother as a Means
The central argument against the practice of somatic
support in the case of brain-dead pregnancy would gosomething like this:(1) It is morally wrong to use one as a means3.
(2) The practice of somatic support on brain-deadpregnancy uses the mother as a means to the fetus’s end.
(3) Therefore, it is wrong to practice somatic support
on brain-dead pregnancy.
The supporters of the practice of somatic support
would deny the second premise of this argument. So it ison whether or not the mother is merely used as a means
to achieve the fetus’s end. The issue is more complicatedbecause, unlike organ donation where the relationshipoccurs between two unrelated individuals, brain-deadpregnancy involves the mother and her baby, two peopleof the same blood. This difficulty reminds us of somesimilar discussions in the abortion case but thedifference is that in abortion, the mother can express her
rights on her own body because she is alive while in thebrain-dead pregnancy, the mother cannot speak. In otherwords, the presence of the mother is the critical point in
the discussion.
Hilde Lindemann Nelson, an American philosophy
philosopher and bioethicist gives an interesting
ingenious analogy, comparing the mother as an architectin her pregnancy. Basically, she compares it to thefamous distinction between the architect and the bee
from Marx that the woman’s activity of being pregnant isthought to follow its own preordained patterns like thebee. With this common view, the pregnant woman
cannot help what she is doing. This would also be
following the biological imperative for survival, as
The definition of brain-death is sometimes definedinconsistently, but on majority, one follows the Harvard
criteria of brain-dead or based on medical indications.
3 Using “one as a means” here can basically sum up the major
controversies on the mother including dying with dignity andthe right of the dead.
2

142

Eubios Journal of Asian and International Bioethics 28 (September 2018)

discussed in the Selfish Gene (Dawkins, 1976), or the loveof life (Macer, 1998).
Nelson believes that such a picture is false because “itspersistence both testifies to and reinforces social attitudes
toward women that are demeaning” 4 because humanpregnancy is no more purely biological than any others
human activities. She narrates as follows, “As is typicalfor her species, she both obeys the laws of nature andimproves upon them, ordering and shaping what she finds
in the natural world through her own intentional, creative
activity. She transforms natural processes by valuing themor by imbuing them with meaning out of the ordinary
phenomenon of hunger, for example, she creates a dinnerparty. That is, she turns the need for food into an occasion
for expressing friendship, or possibly furthering social
ambition. Like the architect’s, her edifices can be and often
are purposeful and deliberate.”5
Nelson finely argues four ways6 that a woman is rather
an architect rather than a bee after having conceived:(1) Unlike other animals, women often are pregnant orconceiving for a reason: they may conceive and carry afetus because they want a special relationship that will
last over time. They might want an existing child to havea sibling, a partner to play with or because withoutchildren they would feel the family is not complete. In
some special case, they might hope the baby’s bonemarrow will be a lifesaving match for a dying family
member.
(2) Once having conceived, the purposiveness continues
that the woman creates a relationship with her fetus. She
might feel at odds with her own body or having a special
harmony with it when belly gets bigger day by day since
she might still regard this fetus as being or not being partof her own self. She can make decision on either givingup (as in the case of abortion and rape) if she feels
intrusion or embraces the loving relationship with thefetus since the beginning. Moreover, unlike outsiders(the father, grandparents, siblings…) can know theexperience of the child from her own inner perspectives(3) Pregnancy is a creative and purposeful process.
Throughthedeliberation
in
(1)
and
resistance/acceptance in (2), pregnant woman is also
actively doing something in the present moment for the
fetus she carries with hospitality. For example, she has aduty to restrain from smoking, drinking, taking drugs
and so on. In all these ways, the sheltering act of humanpregnancy carries with it a responsible and wellrecognized moral significance.
(4) Like an architect who firstly, got constrained by thelaw of nature (e.g. obeying the law of nature, building
houses that refrains from earthquakes or flooding andsuch) and secondly, got refrained from the social forcesin their profession (through their education and society
they work), a pregnancy woman creates purposefully
within a biological and social context. She, obeying thelaw of nature, carries the pregnancy to full-term,
technically 40 weeks and cannot be hurried with all
acceptances on her body and hormones changes. She
4 Hilde Lindemann Nelson, 1994, “The Architect and the Bee:
Some Reflections on Postmortem Pregnancy”, Bioethics 8(3),p.262
5 Ibid, pp. 262-263
6 Ibid, pp. 262-266

also conforms to the societal values where she lives
regarding how she lives, thinks, acts and carries her
pregnancy.
Nelson comes to a conclusion that the presence andexperiences of women before, during and after
pregnancy is a significant factor that signifies the humanelement of bringing a baby to term, not barely rely uponmechanical or pharmacological mimicry of what abiological pregnancy should have been. She sums up that
postmortem pregnancy is “creepy” because it
exaggerates a false model of pregnancy that “it is theimage of the women as passive, as unconscious, asinstinctively rather than deliberately nurturing”7.
Is Nelson’s argument sound? If we closely examine
the four processes that Nelson has nicely narrated about
a woman’s experience of to conceive, to conceiving andcoming to term, we can now draw out a fact that the
woman accepts the fact that pregnancy is a purposefulplanning and accepted process. It is rather aninternalized process, which women overcome to finally
get to a stage of harmony and results in a responsible
treatment over the fetus. Nonetheless, Nelson’s
conclusion rather tells us that because the mother isabsent, the postmortem pregnancy or any pregnancy
that there is no presence from the mother should beterminated. The external circumstance that endangers orbrings out the termination of the pregnancy has spoiled
all the efforts that the mother has build during the past
40 weeks. Because the mother is no longer able to makea purposeful decision does not entail that she does notwant the fetus to carry to term. Hence, while Nelson
made a presumptuous conclusion on the case, and unless
she has clearly indicated her involuntariness through either
in written documents or verbally in continuing the
pregnancy to term, we have a relatively sounderassumption to derive the women’s will in continuing the
pregnancy. The fact is that the woman does not choose toabort at any point before the tragedy occurs.
3. The Value of the Fetus Life
On the contrary, the supporters of the practice ofsomatic support on brain-dead pregnancy usually voicesthat comparing to a mother who is to be considered as a“cadaveric incubator”, the fetus’s life is more precious forthat there is the potentiality to be survive. Moreover, it isclaimed from a medical point-of-view that it isacceptable to strive to resuscitate the fetus bymaintaining life support if there is a reasonable chance
the pregnancy will continue at least until fetal lungmaturity is achieved (Fadel, 2011). Similarly, from theprinciple of beneficence, physician shall act for the bestinterests of the patients. There is a corresponding
practice in real practices that physicians must primarily
focus on saving the life of the fetus, and that therefore
the treatment protocol should give special
recommendations on how to support the mother in a
way that she can deliver a viable and healthy child(Esmaeilzadeh et.al. 2010).
From the supporters’ viewpoint, it is the life of the
fetus is more valuable than the life of the brain-deadmother. That is being born is better than being unborn
7 Ibid, p.266

Eubios Journal of Asian and International Bioethics 28 (September 2018)
or non-existence. One would straightly recall about
traditional religious viewpoint especially in Christianitythat life begins at the point of conception. Nonetheless, it
should be noted that such argument is already rejectedby current philosophical viewpoint when discussed
about abortion.8 Still, the abortion discuss is not of any
help in the discussion of the practice of somatic support
in brain-dead pregnancy because for the former, theunderlying line can set out criteria of moral status
whether an embryo or fetus is a (human) person while in
the latter, the fetus has reached the last stage ofpregnancy or maturity.9 Therefore, based on the same
criterion, the fetus in the case of brain-dead pregnancy, it
is entitled with moral status. Yet it appears that even if
the fetus gains moral status, the controversy on thepractice of somatic support remains.
How should we then look upon the matter of maternalsomatic support? In addition to the willingness of themother, a medical indication that the neonate would
survive healthily should also be of consideration. Fromthe principle of beneficience, physicians must primarily
focus on saving the life. In the case of maternal somatic
support, that life is that of the fetus. Erlinger (2017)
conducted a literature review on forty-three pregnant
patients, who were in a permanent vegetative state, arebrain dead, or in a coma, 1976-2015. The result showsthat for the neonates, the optimal period for delivery aviable and healthy infant in a normal pregnancy is 32 to
34 gestational weeks. Prior to week 24, the neonate
would have a 20% to 30% chance for survival, with 40%
probability of severe neurological disorders. The
prognosis improves for neonates delivered between
weeks 24 and 28, when the survival increases to 80%,and the risk of neurological complications is 10%. After
gestational week 32, the risk to the life and health of the
fetus is the lowest, with a 98% survival rate and lessthan a 2% risk of neurological complications.
Conclusion
In conclusion, it has been demonstrated that the focusof the discussion is placed on the relationship between
the mother-fetus, rather than as two distinct individuals.
The previous discussions on the brain-dead pregnancy
try to break the two agents into two separated unrelated
persons. More than this, the discussions place largely
biased perspectives, taking side and overlooking thecritical and special component in a mother-child orfamily relationship. Realizing this key point enables us tolook for in-depth into the issues of brain-dead pregnancy.
The question is no longer about the women’s dignity,
their rights after death, and the fetus’s rights to life or
whose value of life is more worth than the other. It israther about the willingness of the mother and how the
medical indications reveal the circumstances, so as how
8 For the arguments on abortion, See Peter Singer, 2011,“Taking Life: The Embryo and Fetus” in Practical Ethics, Third
Edition, (New York: Cambridge University Press), pp.123-154
9 At what point, technically at what term or week of pregnancy,
should the physicians practice the somatic support is stilllacking of empirical data. See Lisa Rose Erlinger, 2017,“Guidelines for Supporting a Pregnant Patient with Brain
Death: A case discussion and literature review”, Journal of
Nursing Education and Practice 7(8): 86-92

143

would we shape our perspective into a right manner.
5. References

Anstötz, Christoph, 1993, “Should a Brain-dead Pregnant
Woman Carry Her Child to Full Term? The Case of the‘Erlanger Baby’”, Bioethics 7(4): 340-350.
Dawkins, Richard. 1976. The Selfish Gene. London.
Esmaeilzadeh, Majid, et.al. 2010, “One Life Ends, Another
Begins: Management of a Brain-dead Pregnant Mother: A
Systematic Review”, BMC Medicine, Accessed on October 19,
2017, from https://doi.org/10.1186/1741-7015-8-74.
Erlinger, Lisa Rose, 2017, “Guidelines for Supporting a
Pregnant Patient with Brain Death: A case discussion andliterature review”, Journal of Nursing Education and Practice7(8): 86-92.
Fadel, Hossam E., 2011, Postmortem and Perimortem Cesarean
Section: Historical, Religious, and Ethical Considerations.
Journal of the Islamic Medical Association of North America
43(3): 194-200.
Macer, DRJ. 1998. Bioethics is the Love of Life. Christchurch,
N.Z.: Eubios Ethics Institute.
Masaki, Sakiko, Ishimoto, Hiroko, Kadooka, Yasuhiro & Asai,
Atsushi, 2016, “Should a Brain-dead Pregnant Woman be
Provided Somatic Support to Save the Life of the Fetus?
Eubios Journal of Asian and International Bioethics 26(4),p.130 (130-136).
Nelson, Hilde Lindemann, 1994, “The Architect and the Bee:
Some Reflections on Postmortem Pregnancy”, Bioethics 8(3),p.262.
Singer, Peter, 2011, “Taking Life: The Embryo and Fetus” inPractical Ethics, Third Edition, New York: Cambridge
University Press.

Pakistani Parents UnderstandInformed Consent but not Assent:
A Pilot Study- Sumaira Khowaja-Punjwani, CPB, MBeth & BScN
Founding Principal & Assistant Professor, Saifee Burhani
School of Nursing, Saifee Hospital Trust, St-1, Block F,
North Nazimabad, Karachi-74700, Pakistan
Email: sumaira.khowaja@yahoo.com;
skpunjwani@sbson.edu.pk
Abstract
Background: Informed Consent should be considered
as essential part of clinical practice in adult as well as inpediatric settings. The scenario of informed consent inpediatric clinical settings varies because minors arelegally considered incompetent to provide decisions thathave legal bindings regarding healthcare.
Research Objectives: The objectives of this study areto (i) understand the importance of Informed Consent
for Clinical Treatment in Pediatric settings from parents
perspective; (ii) explore the current practice of Informed
Consent(IC) obtained for clinical treatment in Pediatricsetting of developing country hospital(s) (iii) identify
factors associated with the practice of obtaining IC; and(iv) recognize involvement of child in decision making
process i.e. assent.
Research Design: This is Descriptive Exploratory
Single Center study that reveals inadequacies in theprocess of informed consent in pediatric settings. Data
was obtained from parents of pediatric patients

144

Eubios Journal of Asian and International Bioethics 28 (September 2018)

admitted in pediatric intensive care unit for at least 24
hours Data was obtained from 128 participants.
Ethical Considerations: The research was approvedby institutional ethics review committee and verbal
informed consent was obtained from all study
participants. All parents who agreed to participate inresearch were assured that their responses would
remain confidential and would not affect their childclinical treatment in any way.
Findings: Most participants were satisfied by current
informed consent process. 89% (n=114) of parents
disagreed over involvement of child in decision making
process for clinical treatment i.e. assent.
Discussion: Previous studies done in Pakistanicontext on adult population reveals inadequate processof informed consent and level of illiteracy, language
barrier, insufficient time provision for signing informed
consent, poverty, power deferential and oppressive mind
as factors hindering meaningful consent.
Conclusion: Our pilot project suggests generalsatisfaction of parents with current process which raises
three important questions i.e. are we getting better? Is
pediatrics different than adult? And are parents satisfied
with an inadequate process?
Key Words: Informed Consent, Pediatrics, Bioethics,
Assent, Pakistan
Introduction
Informed consent is a process grounded in the notion ofrespect for person. In medical practice, the concept of
informed consent is concentrated on the principle ofautonomy where an adult individual makes a decision
for himself by choosing best of the accessible
possibilities (Beauchamp & Childress, 2001). It is right ofan adult to make informed decisions regarding their life
and about medical treatment, for this reason informed
consent is administered by Health Care Professionals(HCPs) to a competent adult patient that enables them toact in accordance of informed choices.
The scenario of informed consent in pediatric clinicalsettings varies because minors are legally considered
incompetent to provide decisions that have legalbindings regarding healthcare. Parents have the legal
and moral authority to make medical decisions on behalfof their children as their Surrogate Decision Makers(SDM) for several reasons (Diekema, 2004). Parents are
considered to make best decisions for their child as theycare for them, know the needs of child and protect theirchildren from harm (Unguru, Pediatric decision-making:informed consent, parental permission, and child assesnt,
2011). However, the right of parents to act as SDM for
their child is not right centered on principle of autonomy
rather it is an obligation of parents to provide
appropriate medical care to their child. According to
Beauchamp & Childress 2001, only parenthood doesn’t
make one qualify for acting as SDM for their child. SDM
must meet the four pre-requisties i.e. (i) be competent tomake resaoned judgements; (ii) possess adequate
knowledge and information; (iii) be emotionally stable
and; (iv) be comitted to the incompetent patient’s
intrests (Fisher-Jeffes, Barton, & Finlay, 2007; Unguru,
Pediatric decision-making: informed consent, parental
permission, and child assesnt, 2011; Hall, Prochazka, &Fink, 2012).

Pakistan is categorized as low-to-middle income
developing country with an annual per capita income indollar terms has reached to US $1512 in 2014-2015(Highlights of Pakistan Economic Survey 2014-2015,2015). Population census illustrates Pakistan as world’s
6th largest populous country with population estimate at
191.71 million (Wikipedia, 2016). As per UN 2015 report
35% of the total population belongs to age group of 0 to
14 years, 58.4% are 15 to 59 years, and 7.2% are over 60
years of age (Population Division of the Department of
Economic and Social Affairs of the United Nations
Secretariat. World Polutaion Propspects, 2015). The
average number of people per family is 6.8, and almost
17.2% people live below the poverty line (Bajwa, 2013).
The average life expectancy for men and women is 63
and 67 years respectively (UNICEF; Pakistan Statistics,
2013). In Pakistan, the decision making process isinculcated in family centered approach and community
based society. Extended families i.e. three or moregenerations are seen residing in the same house(Moazam, 2000). In addition, hierarchal and patriarchal
system is followed where eldest male or earning male ofthe family makes decisions for women and other family
members and following of their decision is expected.
Physicians are generally seen as angles or heavenly
creatures and one that is sent by God to help them indifficult situations and are trusted, respected forauthority and feared (Khan, 2008). Literacy rate is 55%(Literacy Rate of Education in Pakistan 2016, 2015) with
masses having no concept of individual rights. Overall,
the approach used for decision making process ispaternalistic rather autonomous approach (Corrigan,
2003). The concept of informed consent essentiallydemands shifting from paternalistic approach toautonomous approach.
Several studies have been done that investigates theprocess of informed consent in pediatric researchsettings (Pate, 2013). However, there is poor, if any,
published information about the process of informed
consent used for clinical treatment in pediatric settings
especially in hospitals of developing countries anddiscussion is far from being considered by society. Thereis significant need to understand the phenomena ofobtaining informed consent in pediatric clinical settings
to reduce the risk of exploitation and protection ofvulnerable population which in this case is pediatric.
This pilot study reports on a descriptive exploratory
likert scale responses of parents of pediatric patients, toexplore existence of IC form, process and policy forclinical treatment in Pediatric setting in developing
country hospital(s); the importance of IC for clinicaltreatment in pediatric setting will be investigated;current practice of obtaining IC will be discussed at
greater length; the knowledge that parents have ofclinical treatment for which IC was obtained will beassessed; individual and professional attributes will be
explored that are associated with the practice of IC for
example understanding, language barrier, hierarchy,
power differential, gender differences, and cultural
influence; and lastly, parent’s reflection overinvolvement of child in clinical decision making process
in the form of assent will be discussed. The objectives ofthis study are to (i) understand the importance ofInformed Consent for Clinical Treatment in PediatricEubios Journal of Asian and International Bioethics 28 (September 2018)settings from parents perspective; (ii) explore thecurrent practice of Informed Consent(IC) obtained forclinical treatment in Pediatric setting of developing
country hospital(s) (iii) identify factors associated withthe practice of obtaining IC; and (iv) recognize
involvement of child in decision making process i.e.
assent.
Methodology
This study evolved out of a larger study, “The projecton understanding current practice of informed consent inpediatric clinical settings of developing country hospitals”,
which aimed to describe and understand the informed
consent process from perspective of parents of children
admitted in pediatric hematology-oncology intensive
care unit and healthcare providers working in pediatricclinical settings. This is Descriptive Exploratory Single
Center study in which data was obtained from parents ofpediatric patients admitted in pediatric intensive careunit for at least 24 hours. Parents of those children who
were admitted in pediatric intensive care unit wereparticipant in this study. Parents who have anexperience of giving informed consent at least once
during their child’s current stay at hospital were
included in study. Parents who did not give informed
consent for any procedure and those who refused toparticipate in study were excluded. Sample size andsubject selection for parents was determined asconvenience sample to provide data, generate
hypothesis and refine the measurements for a morecomprehensive study. Potential participants wereapproached by the data collector, who explained thestudy and offered participation. Immediately after
obtaining informed consent for research participation,
parent was offered likert scale questionnaire by research
officer. A survey was completed during the child’s
inpatient admission or in outpatient pediatric clinics.
The research was approved by the institutional ethics
review committee and verbal informed consent was
obtained from all study participants. All parents who
agreed to participate in the research were assured that
their responses would remain confidential and would
not affect their child clinical treatment in any way.
Instrument and key measures
An extensive literature search revealed absence of an
instrument for obtaining data required for this study
therefore; a pilot study was designed in whichquantitative instrument i.e. likert scale questionnaire
were developed and tested simultaneously for its
validity and reliability. This instrument was used to elicit
data and provide data regarding informed consent
process experience of parents who recently or in past
provided informed consent for clinical treatment of theirchild. Socio-demographic data including age of parent
and child both, gender, ethnicity, socioeconomic status,
education level, language barriers and purpose ofobtaining informed consent was obtained via brief preinterview questionnaire which was followed byadministration of likert scale questionnaire (see Table 1).
Data collector and language translators administeredquantitative instrument to those participants who wereunable to read, write, speak or understand both thelanguages. The likert scale was comprised of 12 items

145

focused on identifying parent’s understanding about theprocess of informed consent, comprehension, process,voluntariness, their satisfaction with current process
and involvement of child in decision making process. A 5
point scale consisting of ‘strongly disagree, disagree,
don’t know, agree and strongly agree was used. The
instrument was initially developed in English andtranslated in Urdu. Respondents were also asked tocomment on content and flow of survey questionnaire.
Questions that were marked as difficult to understandcorrectly were discussed, revised and pilot tested again.
The questionnaire was finalized after evaluation of allquestions clarity and comprehension.
Results:
Demographic and Socio-Economics:
Data was obtained from 128 participants for pilot testingfrom single center. Overall there were 112 male and 16
female participants (M:F = 7:1). Mean age ofparticipating parent was 45.35 years (SD: 8.875, range
28 - 69). Although, we wanted to have equal
representation from both gender for the purpose of datacollection but most of women did not agree toparticipate in our survey and they deferred us to malehead of household. The mean age of child for whom IC
was obtained from parent was 7.45 years (SD: 4.058,
range 2 - 15). 45 children were female and 83 were male.
The sampling technique was convenient therefore; equal
representation of child gender was not achieved. The
group had equal representation from all ethnic origins,out of 128 research participants 13 (10.2%) were Sindhi,
39 (30.5%) Punjabi, 52 (40.6%) Pashtun, 14 (10.9%)
Balochi, 6 (4.7%) Saraki and 4 (3.1%) Muhajir. Socioeconomic data shows mean monthly income of parents
21350 Pakistani Rupees which is equivalent to USD
203.86 and the mean total number of family members as
8.55. Monthly income per capita in Pak Rupees was also
calculated for each household. 26 families (20.3%) fallunder <1500, 45 families (35.2%) were in bracket 1501
– 2000, 27 families (21.1%) between 2001 – 3000 and
30 families (23.4%) above 3000 monthly income percapita in Pak Rupees (USD 1 = Rs. 105). Satisfaction ofparents with informed consent was not related toeducation level. Satisfaction of parents with informed
consent was not related to ethnicity and monthly
household income per capita. Level of education in
research population was 15 (11.7%) illiterate, 27(21.1%) have studied <10 grade, 33 (25.8%) had
completed 10th grade, 35 (27.3%) had completed 12th
grade, 11 (8.6%) were undergraduate and 7 (5.5%) were
having postgraduate qualification. Impact of level of
education on understanding informed consent was notfound to be significant (see Table 2: Demographic andSocio-Economic Data).
Consenting person:
To examine parental shared decision making model
existence in Pakistani context the research group was
asked specifically regarding the consenting person on
behalf of child with options mentioned as father, mother,both father and mother, and any other. Our study
illustrated that informed consent in pediatric clinicalsettings was mostly given and signed by patient’s father
i.e. 97 (75.8%), 31 (24.2%) by mother and 0 (0%) byTable 1: Informed Consent Survey Questionnaire for Parents
a. Demographic data
1. Date:
3. Age of parent:

2. Participant identification number:
4. Age of Child5. Gender of parent□ Male□ Female

6. Gender of Child□ Male□ Female

7. Race/ Ethnicity□ Sindhi□ Punjabi□ Pashtun□ Balochi□ Saraiki□ Muhajir□ Other, _____________
8. Socioeconomic status□ Monthly income: ____________________□ Total number of family members: __________________
9. Education level□ Illiterate□ < 8th grade□ 10th grade□ 12 grade□ Undergraduate□ Postgraduate or above
10. Relationship with patient□ Father□ Mother□ Brother□ Sister□ Uncle□ Aunt□ Any other, _______________
11. Consent was obtained from□ Father□ Mother□ Both father and mother□ Any other, Specify relationship: ______________
12. Language you speak and understand (select all applicable)□ English□ Urdu□ Sindhi□ Balochi□ Punjabi□ Pashtu□ Any other, ________________
13. Language in which informed consent was obtained (select all applicable)□ English□ Urdu□ Sindhi□ Balochi□ Punjabi□ Pashtu□ Any other, ________________
14. Informed consent was obtained by□ Doctor□ Nurse□ Both□ Any other, specify______________
15. Purpose of informed consent (select all applicable)□ Surgical□ Mechanical□ Chemothe-□ Invasive diagnostic□ Other: _______________
procedure
Ventilation
rapy
proceduresb. Likert Scale
1. As per my understanding obtaining informed consent is moral requirement.
□ Strongly disagree□ Disagree□ Don’t know
□ Agree□ Strongly agree
2. As per my understanding obtaining informed consent is legal requirement.
□ Strongly disagree□ Disagree□ Don’t know
□ Agree□ Strongly agree
3. An informed consent should be obtained for treatement/procedure.
□ Strongly disagree□ Disagree□ Don’t know
□ Agree□ Strongly agree
4. I think it was important to obtain informed consent from me.
□ Strongly disagree□ Disagree□ Don’t know
□ Agree□ Strongly agree
5. I was able to get copy of informed consent form after signing for my record.
□ Strongly disagree□ Disagree□ Don’t know
□ Agree□ Strongly agree
6. I was able to understand information provided to me completely.
□ Strongly disagree□ Disagree□ Don’t know
□ Agree□ Strongly agree
7. I was able to understand the treatment/procedure that they wanted to perform on my child.
□ Strongly disagree□ Disagree□ Don’t know
□ Agree□ Strongly agree
8. I think informed consent was necessary to obtain for said procedure.
□ Strongly disagree□ Disagree□ Don’t know
□ Agree□ Strongly agree
9. I was satisfied by the time given to me for explanation of procedure/treatment.
□ Strongly disagree□ Disagree□ Don’t know
□ Agree□ Strongly agree
10. Enough time was provided to me for making decision and signing informed consent form
□ Strongly disagree□ Disagree□ Don’t know
□ Agree□ Strongly agree
11. I gave informed consent voluntary without any coercsion of influence.
□ Strongly disagree□ Disagree□ Don’t know
□ Agree□ Strongly agree
12. I involved my child in decision making process with me.
□ Strongly disagree□ Disagree□ Don’t know
□ Agree□ Strongly agree

Eubios Journal of Asian and International Bioethics 28 (September 2018)

147

Table 2: Demographic and Socio-economic Data

Table 3: Practice of Informed Consent

Variable
Frequency (%)
Age of parent
18-35 years
7 (5.46)
35-50 years
91 (71.1)
50 and above
30 (23.43)
Gender of ParentMale
112 (87.5)
Female16 (12.5)
Age of child
0-2 years (Infancy)
8 (6.25)
2-5 years (Toddler)
45 (35.15)
6-12 years (School age)57 (44.53)
13-18 years
18 (14.06)(Adolescents)
Gender of childMale
83 (64.84)
Female45 (35.15)
Race/Ethnicity
Sindhi13 (10.15)
Punjabi
39 (30.46)
Pashtun52 (40.62)
Balochi
14 (10.93)
Saraki6 (4.68)
Muhajir
4 (3.12)Monthly income/Capita in Pak Rs.
($1= Rs 105)<1500
26 (20.31)
1501-2000
45 (35.16)
2001-3000
27 (21.09)>3001
30 (23.43)
Education level
Illiterate
15 (11.72)<10 grade (below matric) 27 (21.09)
10 grade (matric)
33 (25.78)
12 grade (intermediate)35 (27.34)
Undergraduate
11 (8.59)
Postgraduate
7 (5.46)

Variable
Frequency (%)
Relationship of research participant with
Patient
Father112 (87.5)
Mother16 (12.5)
Brother
0 (0.00)
Sister0 (0.00)Uncle
0 (0.00)Aunt
0 (0.00)
Consent was obtained from
Father97 (75.78)
Mother31 (24.22)
Both father and
0 (0.00)
motherLanguage participant speaks andUnderstandEnglish7 (5.46)
Urdu
128 (100)
Sindhi13 (10.15)
Balochi
14 (10.93)
Punjabi
39 (30.46)
Pashtu52 (40.62)
Language in which IC was obtained
English0 (0.00)
Urdu
128 (100)
Sindhi0 (0.00)
Balochi
0 (0.00)
Punjabi0 (0.00)
Pashtu0 (0.00)
IC was Obtained by
Doctor96 (75.00)
Nurse
23 (17.96)
Both Doctor and Nurse 9 (7.03)
Purpose of obtaining IC
Surgical procedure34 (26.56)
Mechanical ventilation 47 (36.72)
Chemotherapy
18 (14.06)
Invasive Diagnostic
29 (22.65)
procedures

Table 5: Participant Responses to Assent with reference to Child Age
Age Group
Infancy (0-2 years)
Toddler (2-5 years)
School age (6-12 years)
Adolescents (13-18 years)

Total numberof respondents(n=128)84557
18Strongly
DisagreeDisagree

Don’t
Know

Agree

Strongly
Agree

0 (0)
0 (0)
0 (0)
0 (0)

8 (100)42 (93.33)
52 (91.22)
12 (66.66)

0 (0)
0 (0)
0 (0)
0 (0)

0 (0)
3 (6.66)
5 (8.77)
6 (33.3)

0 (0)
0 (0)
0 (0)
0 (0)

148

Eubios Journal of Asian and International Bioethics 28 (September 2018)

Table 4: Likert scale response analysis
Item
1. As per my understanding informed
consent is moral requirement.
2. As per my understanding informed
consent is legal requirement.
3. An informed consent should be obtained
for treatment/procedure.
4. I think it was important to obtain
informed consent from me.
5. I was able to get copy of informed
consent form after signing for my record.
6. I was able to understand information
provided to me completely.
7. I was able to understand thetreatment/procedure that they wanted toperform on my child.
8. I think informed consent was necessary
to obtain for said procedure.
9. I was satisfied by the time given to me
for explanation of procedure/treatment
10. Enough time was provided to me formaking decision and signing informed
consent form.
11. I gave informed consent voluntary
without any coercion of influence.
12. I involved my child in decision making
process with me.

Strongly
Disagree
n (%)
0 (0)

Disagree
n (%)
0 (0)

Don’t
Know
n (%)
0 (0)

n (%)
97 (75.78)

Strongly
Agree
n (%)
31 (24.21)

0 (0)6 (4.68)

13 (10.15)

88 (68.75)

21 (16.4)

0 (0)

0 (0)

0 (0)

105 (82.03)

23 (17.96)

0 (0)

0 (0)

0 (0)

107 (83.59)

21 (16.4)0 (0)5 (3.9)119 (92.96)

4 (3.12)

0 (0)

0 (0)

0 (0)

0 (0)

89 (69.53)

39 (30.46)

0 (0)

0 (0)

0 (0)

96 (75)32 (25)

0 (0)

0 (0)

16 (12.5)

77 (60.15)

35 (27.34)

0 (0)

0 (0)

11 (8.59)

88 (68.75)

29 (22.65)

0 (0)

0 (0)

13 (10.15)

61 (47.65)

54 (42.18)

0 (0)

0 (0)

0 (0)

104 (81.25)

24 (18.75)

0 (0)114 (89.06)

0 (0)14 (10.93)

0 (0)both mother and father which strengthens patriarchal
approach in Pakistani context and discourages parental
shared decision making model.
Language Barrier:
To examine a potential language barrier, all respondents
were asked to select language(s) that they are able tospeak and understand completely and language(s) inwhich informed consent was obtained from them as
population of Pakistan has many diversified regional andlocal languages and language barrier is one theimportant factor that is frequently encountered inclinical practice while providing care to patients. The
findings represented that all respondents were able tospeak and understand their regional as well as national
language. 100% respondents mentioned the language inwhich IC was taken and the language that they were able
to speak and understand as same which in Pakistaniscenario is Urdu.
Purpose of obtaining Informed Consent:
Data depicts that obtaining informed consent is routine
practice of both doctors and nurses with 96 (75%)
respondents choosing doctors, 23 (18%) selected nurses
and 9 (7%) selected both doctor and nurse as one who
obtained IC from them. Purpose of obtaining IC wasdiversified that included 34 (26.6%) for surgicalprocedure, 47 (36.7%) for mechanical ventilation, 18(14.1%) for initiating chemotherapy and 29 (22.7%) forAgreeinvasive diagnostic procedures (see Table 2: Practice ofInformed consent).
Informed Consent Process:For each item, likert scale response ‘strongly agree’ and‘agree’ indicates that proper procedure obtaining IC was
followed whereas, ‘strongly disagree’ and ‘disagree
depicts lack in the process of obtaining IC. Response‘Don’t know’ illustrates neutral opinion. Most of theparticipating parents reported that they found informed
consent process helpful and were satisfied with current
practice and process of obtaining informed consent thatcan be seen as 85%-100% research participant selected
option agree or strongly agree against item 1, 2, 3, 4, 6, 7,
8, 9, 10 and 11. For item 5, 92.96% (n=119) of
respondents selected don’t know that depicts lack of
insight about individual/patient/caregiver right. For
item 12, 89.06% (n=114) of parents selected option
disagree which demonstrates huge disagreement byparents on involvement of child in decision making
process for clinical treatment or assent (see table 4:
Likert Scale Response Analysis). This disagreement wascommon across all age groups i.e. 100% (n=8), 93.33%(n=42), 91.22% (n=52) and 66.6% (n=12) for age groupinfancy (0-2 years), toddler (2-5 years), school age (6-12
years) and adolescent (13-18 years) respectively (seetable 5: Participant Response to Assent with Reference
to Child Age).

Eubios Journal of Asian and International Bioethics 28 (September 2018)
Discussion
The present study was designed with a purpose toassess the process of IC in critical care pediatric settings.
Several factors complicate informed consent forpediatric clinical treatment in intensive care settings.
The majority of parents that participated in the study
were those whose child was admitted in pediatricintensive care unit with cancer as primary diagnosis
which primarily compromises parent’s ability to makeinformed and independent decisions as the news ofcancer diagnosis itself is very distressing and patients aswell as parents experience physical and psychologicalstress because of hospitalization (Pate, 2013).
This is especially problematic when there is a clinicalurgency to initiate treatment that adds pressure on
parents to make prompt decisions that have direct
impact on life and death of their child. Moreover, as thesettings in which their child was getting treatment wascharity settings and most of the parents had affordability
issues because of which they wanted their child to getcare in respective hospital as the hospital works ofphilanthropic support and provides quality of care freeof cost to these children. Health care facility affordability
is an enormous issue in developing countries andtherefore, admitting child in such facility than poses
great challenge to parents autonomy as their decision
might be coerced by fear of not getting treatment if
refusal is made or affordability issues if they want totake their child to other hospital for treatment which
may not be offered by this hospital.
Moreover, physician-patient power deferential andperception of doctors as divine creatures of God makes it
even more difficult for patients to question physician
judgment. Therefore, the component of voluntarism indeveloping country population cannot be assed as an
absolute feature as decision is driven and influenced bysocio-economic determinants like poverty, illiteracy, andoppressive mind (Khan, 2008). Although these factors
pose great challenges for application of informed
consent in pediatric settings, the the difficulties do notundermine its importance (Kodish, et al., 1998). The
study found that parents (fathers) are satisfied with thecurrent process of IC in pediatric settings. Whereas,
previous studies done in 2006 and 2008 on adult
Pakistani population showed inadequacies in the processof obtaining IC (Humayun, et al., 2008; Amin, et al., 2006).
These findings raises three important questions i.e. are
we getting better? Is pediatrics different than adult? And
are parents satisfied with an inadequate process?
This study reports a very significant findings
regarding absence of role of child in the informed
consent process. The mean age of child was 7.45 years
with range 2 years to 15 years and it was unanimousamong parents that they did not involve their child in
making decision related to their healthcare. Researchsuggests that an imbalance of power between adults andpediatric patients may provide additional stressors,
especially if children are not allowed to participate incollaborative decision-making processes and are forced
against their will to comply (Pate, 2013). Pediatricpatients’ decision making capacity should be assessed
based on their ability to evaluate their medical condition
and the consequences of the medical decisions made,and the power to make accurate and logical deductions.

149

Stages of childhood can be divided into three stages i.e.
early childhood that includes infancy and toddler, middle
childhood and adolescence. In early childhood, parents
are fundamentally the only decision-makers and the
involvement of child in decision-making process is not
permitted. In middle childhood, even though, parents
are the final decision makers nonetheless obtaining
assent from child is important whereas informed
consent is not required. In adolescence age group,
assessment of patient’s capacity is significant andinvolvement of adolescent patient in medical decisionmaking is ethically obliged to the extent appropriate totheir capacity (Parsapoor, et al., 2014). Meaningfulassent required an appreciation of the child’sdevelopmental stage and acknowledgment of his basic
preferences. A child should be included in medical
decisions to the extent that he or she is able to and wants
to be involved. Parents and healthcare providers need toencourage children to communicate openly so thatchildren may be actively involved in assent process(Unguru, 2012).
As this was a pilot study therefore the number ofparents we studied was very small, which may limit thegeneralizability of findings. Furthermore, we studied
only those parents i.e. fathers who agreed to participate.
Also, this study reports findings of a single center which
is private hospital. We believe that if this study will be
conducted in government hospitals than the findings
may be different because of diverse patient populationand dissimilar approach/attitude of healthcare providers
towards patients. It will also provide a contrast ofpractice of informed consent in government and private
pediatric clinical settings. Future research must include
more centers and larger numbers of parents of children
who we enrolled as well as those i.e. mothers who
declined to participate. Despite of these limitations theresults reported by this study have important
implications regarding informed consent for pediatricclinical treatment. The findings suggest that majority ofparents are satisfied with the informed consent process.
Our research demonstrates that ample amount of time
was provided to parents to make decisions but we did
not study whether ample opportunity was provided tothem for asking questions and seeking alternative
treatment.
The only factor that may mitigate this conclusion is
the finding that 93% of parents reported that they don’tknow about having a copy of signed informed consent
for their record. This finding also depicts that people
residing in developing countries are either totallyunaware or partially aware about their rights and sameis true for patients and parents right in healthcare
settings. This study was limited to exploring the current
practice of informed consent in pediatric setting fromparent’s perspective which reports a high satisfaction.
The larger study also focuses on exploring the current
practice of informed consent from a clinician’s
perspective which literature has suggested to be a little
problematic. Satisfaction alone doesn’t guarantee/
constitute adequate informed consent. Comprehensionof information provided represents another importantelement of informed consent. The data reported herecannot address this issue because of small number of
research participants and instrument design. Future

150

Eubios Journal of Asian and International Bioethics 28 (September 2018)

research must evaluate cognitive objectives of informed
consent to assess more completely the adequacy of
current practice. Analysis of level of education andincome per captia in Pak rupees in our small cohort
demonstrated no significant difference with regard tounderstanding of the information provided for informed
consent. More research on assessing the impact of levelof education and household income per capita on
parents understanding of information for informed
consent is necessary.
Conclusions
Previous studies done in the Pakistani context on
adult population reveals an inadequate process of
informed consent and level if illiteracy, language barrier,insufficient time provision for signing informed consent,
poverty, power deferential and oppressive mind asfactors hindering meaningful consent barriers. Our pilot
project suggests general satisfaction of parents with thecurrent process which is gratifying, we remain
concerned regarding the possible gap in comprehension,and acceptance by parents of information and processthat is below international and ethical standards. Future
research than must include more centers and large
number of parents of children especially those mothers
who refused to participate. More qualitative andexploratory research may identify significant factors that
inhibit child involvement in decision making process byparents. Subsequently, investigating approach that istaken by parents in situations where there is diverging
view point of parent and child over treatment options
provided is essentially required. More research on thecapacity and role of child in consent and assent for theirclinical treatment is also necessary. Research on
exploring approach of healthcare providers on
involvement of child in decision-making process,investigate the quality of patient knowledge andunderstanding of information provided for obtaining
informed consent, investigates the role of clinicians andtheir interactions with parents and children during theinformed consent process and explicit research focusedon the knowledge, attitudes, and use of assent byhealthcare providers should continue. Lastly, it isessential to determine an effective, practical, andrealistically applicable decision-making model inpediatric clinical settings.
References

Abbe, M., Simon, C., Angiolillo, A., Ruccione, K., & Kodish, E. D.
(2006). A survey of language barriers from the perspectiveof pediatric oncologists, interpreters, and parents. PediatricBlood and Cancer , 47 (6), 819-824.
Althabe, M., Cardigni, G., Vassallo, J. C., Allende, D., Berrueta, M.,
Codermatz, M., et al. (2003). Dying in the intensive care unit:
Collaborative multicenter study about forgoing lifesustaining treatment in Argentine pediatric intensive careunits. Pediatric Critical Care Medicine , 4 (2), 164-169.
Amin, M. F., Jawaid, M., Shafiq-ur-Rehman, Mudassir, Hina, &Zakai, S. B. (2006). An audit of Information provided during
preoperative informed consent. Pakistan Journal of Medical
Sciences , 22 (1), 10-13.
Angell, M. (1997). The ethics of clinical research in the third
world. The New England journal of Medicine , 337 (12), 847849.

Bajwa, A. (2013). House Hold Integrated Economic Survey 20112012. Islamabad: Government of Pakistan, Statistics Division,
Pakistan Bureau of Statistics.
Beauchamp, T., & Childress, J. (2001). Principles of Bioemdical
Ethics (5th ed.). New York: Oxford University Press.
Berry, D., Dodd, M., Hinds, P., & Ferrell, B. (1996). Informed
consent: process and clinical issues. Oncology Nursing Forum ,23 (3), 507-512.
Bioethics, A. A. (1995). Informed consent, parental permission,and assent in pediatric practice. Pediatrics , 95 (2), 314-317.
Birchley, G. (2014). Deciding Together? Best Intrests andShared Decision-Making in Paediatric Intensive Care. HealthCare Anal , 22, 203-222.
Cheah, P. Y., & Parker, M. (2014). Consent and assesnt inpaediatric research in low-income settings. BMC medical
Ethics , 15-22.
Corrigan, O. (2003). empty ethics: the problem with informed
consent. Sociology of Health and Illness , 25 (3), 768-792.
Diekema, D. S. (2004). Parental refusals of medical treatment:
the harm principle as threshold for state intervention.
Theoritical Medicine , 25, 243-264.
Ethical Principles of psychologists and code of conduct. (n.d.).
Retrieved
2011
йил
March
from
http://www.apa.org/ethics/code/index.aspx
Fisher-Jeffes, L., Barton, C., & Finlay, F. (2007). Clinicians'
knowledge of informed consent. Journal of Medical Ethics , 33,
181-184.
Frey, R. (1998). The Fear of a Slippery Slope. In G. Dworkin, R.
Frey, & S. Bok, Euthanasia and Physician-Assisted Suicide (pp.
43-63). United States of America: Cambridge University
Press.
Gensler, H. (2009). Singer's Unsanctity of Human Life: A
Critique. In J. Schaler, Peter Singer Under Fire (pp. 163-184).
United States of America: Carus Publishing Company.
Hall, D. E., Prochazka, A. V., & Fink, A. S. (2012). Informed
consent for clinical treatment. Canadian Medical Association
Journal , 184 (5), 533-540.
(2015). Highlights of Pakistan Economic Survey 2014-2015.
Islamabad: Government of Pakistan, Ministry of Finance.
Humayun, A., Fatima, N., Naqqash, S., Hussain, S., Rasheed, A.,
Imtiaz, H., et al. (2008). Patients' perception and actual
practice of informed consent, privacy and confidentiality ingeneral medical outpatient departments of two tertiary care
hospitals of Lahore. BMC Medical Ethics , 9 (14).
Khan, R. I. (2008). Informed consent and some of its problems
in Pakistan. Journal of Pakistan Medical Association , 58 (2),82-84.
Kitchener, B., & Jorm, F. (1999). Conditions Required for a Law
on Active Voluntary Euthanasia:A Survey of Nurses' Opinions
in the Australian Capital Territory. Journal of Medical Ethics ,25-30.
Kodish, E. D., Pentz, R. D., Noll, R. B., Ruccione, K., Buckley, J., &Lange, B. J. (1998). Informed consent in the childrens cancergroup: results of priliminary research. American Cancer
Society , 82, 2467-2481.
Krener, P. K., & Mancina, R. A. (2009). Informed Consent orInformed Coercion? Decision-Making in Pediatric
Psychopharmacology. Journal of Child and Adolescent
Psychopharmacology , 4 (3), 183-200.
Levi, R. B., Marsick, R., Drotar, D., & Kodish, E. D. (2000).
Diagnosis, Disclosure, and Informed Consent: Learning From
Parents of Children With Cancer. Journal of PediatricHematology/Oncology , 22 (1), 3-12.
Literacy Rate of Education in Pakistan 2016. (2015, Febuary 19).
Retrieved January 20, 2016, from Archivist Online:
http://www.archivistonline.pk/literacy-rate-in-pakistan/
McCullough, L. B. (2010). Contirbutions of ethical theory topediatric ethics: Pediatricians and parents as co-fiduciaries
of pediatrics patientts. In G. Miller, Pediatric Bioethics (pp.
11-21). Cambridge: Cambridge University Press.

Eubios Journal of Asian and International Bioethics 28 (September 2018)
McHaffie, H. E., Laing, I. A., Parker, M., & McMillan, J. (2001).
Deciding for imperilled newborns: medical authority or
parental autonomy? Journal of Medical Ethics , 27 (2), 104109.
Mercurio, M. R., Murray, P. D., & Gross, I. (2014). Unilateral
pediatric "do not attempt resuscitation" orders: the pros, thecons, and a proposed approach. Pediatrics , 133 (Supplement1), S37-S43.
Miller, V. A., Drotar, D., Burant, C., & Kodish, E. (2005).
Clinician-Parent Communication during Informed Consent
for Pediatric Leukemia Trials. Journal of Pediatric Psycology ,30 (3), 219-229.
Moazam, F. (2000). Families, Patients, and Physicians inmedical decision-making: A Pakistani Prespective. Hasting
Center Report , 30, 28-37.
Orlando, S. (2010 йил 4-January). An Argument for the
Legalisation of Active Euthanasia. Annual Celebration ofStudent Scholarship and Creativity , pp. 1-27.
Parsapoor, A., Parsapoor, M.-B., Rezaei, N., & Asghari, F. (2014).
Autonomy of Children and Adolescents in Consent toTreatment: Ethical, Jurisprudential and Legal Considerations.
Iranian Journal of Pediatrics , 24 (3), 241-248.
Pate, M. F. (2013). Assent and Dissent in Pediatric Progressive
and Critical Care. Nursing Faculty Publications andPresentations , Paper 5.
Pediatrics, A. A. (2000). Committee on Bioethics and Committeeon Hospital Care, Policy Statement: Palliative care for Children.
Pediatrics.
Plantz, D., & Lantos, J. (2014). Parental Authority. In B. a.
Jennings, Bioethics (4th ed., pp. 2298-2305). Detroit:
Macmillan Reference USA.
Population Division of the Department of Economic and Social
Affairs of the United Nations Secretariat. World Polutaion
Propspects. (2010). Retrieved December 31, 2014, from :http://esa.un.org/unpd/wpp/index.htm
Population Division of the Department of Economic and Social
Affairs of the United Nations Secretariat. World Polutaion
Propspects. (2015). Retrieved March 28, 2015, fromhttp://esa.un.org/unpd/wpp/publications/files/key_findings_wpp_2015.pdf
Rachel, J. (1975). Active and Passive Euthanasia.
Roberts, L. W. (2002). Informed consent and the capacity ofvoluntarism. American Journal of Psychiatry , 159 (5), 705712.
Ruccione, K., Karmer, R. F., & Perin, G. (2005). Informed
Consent for Treatment of Childhood Cancer: Factors
Affecting Parents' Decision Making. Journal of PediatricOncology , 22, 58-66.
Sahler, O. J., Frager, G., Levetown, M., Cohn, F. G., & Lipson, M. A.
(2000). Medical education about and of life care in pediatricsetting: Principles, Challenges, and Opportunities. Pediatrics ,105 (3), 575-584.
Satyanarayana, Y. (2010). Ethics:Theory and Practice. New
Delhi: Dorting Kindersley.
Shukla, R. (2011 йил 30-April). Is the 'Next Friend' the Best
Friend. Economic and Political Weekly .
(1994). In P. Singer, A Companion to Ethics. Oxford: Blackwell.
Singer, P. (2003 йил 2003-Dec). Social Science Research
Network .
Singer, P. (1993). Practical Ethics. United Kingdom: Cambridge
University Press.
Sudore, R. L., Landefeld, S., Williams, B. A., Barnes, D. E.,
Lindquist, K., & Schillinger, D. (2006). Use of a modified
informed consent process among vulnerable patients: A
descriptive study. Journal of General Internal Medicine , 21,867-873.
Supreme Court's Judgment on Aruna Shanbaug Euthanasia, 115(The Supreme Court Of India 2009 йил 7-March).
Unguru, Y. (2012). Decision Making for Children with LifeLimiting Illnesses: A Clinical Approach. Journal of Health Care
Law and Policy , 15 (1), 117-128.

151

Unguru, Y. (2011). Pediatric decision-making: informed
consent, parental permission, and child assesnt. In D. S.
Diekema, M. R. Mercurio, & M. B. Adam, Clinical Ethics inPediatrics A Case Based textbook (pp. 1-6). Cambridge:
Cambridge University Press.
Unguru, Y., Coppes, M. J., & Kamani, N. (2008). Rethinking
pediatric assent: from requirement to ideal. Pediatric Clinics
of North America , 55 (1), 211-222.
(2014). UNICEF: Every Child Counts. New York: United Nations
Publications.
UNICEF; Pakistan Statistics. (2013, December 27). Retrieved
December
31,
2014,
from
http://www.unicef.org/infobycountry/pakistan_pakistan_statistics.html
Wikipedia. (2016, March 16). Retrieved March 28, 2016, fromhttps://en.wikipedia.org/wiki/Census_in_Pakistan
Wirshing, D. A., Wirshing, W. C., Marder, S. R., Liberman, R. P., &Mintz, J. (1998). Informed Consent: Assessment ofComprehension. American Jounral of Psychiatry , 155 (11),1508-1511.
Young Minds Debate Euthanasia. (2011 йил 30-September).
The Times of India .

Cybersecurity Challenges in the
Implementation of a HospitalManagement Information System- Penggalih Mahardika Herlambang
Health Faculty, Dian Nuswantoro University, Indonesia
Email: penggalih@dsn.dinus.ac.id- Rani Tiyas Budiyanti*
Public Health Faculty, Diponegoro University, Indonesia
Email: rani_tyas@live.undip.ac.id- Andi Novianto
Computer Science Faculty , Duta Bangsa University ,Indonesia
Email: solobreak05@yahoo.co.id
Abstract
Background: Hospital Management Information
Systems (HMIS) have become an important part of a
hospital's business process. The integration of HMIS withother vertical and horizontal health system elements ispart of the roadmap of national health information
system development (HIS). However, this integration has
various risks in terms of cybersecurity like the case of
the previous Wannacry Ransomware in several
Hospitals.
Method: Literature review was used to obtain data andinformation about what risks of cybersecurity can occur
to HMIS. Sources of literature used come from journals,
articles and reports of cyberattack attacks from within
and outside Indonesia.
Results: There are various forms of cyberattacks thatcan occur to HMIS including Phishing, Ransomware,
DDoS (Distributed Denial of Service), and also internal
data leakage. This security gap can interfere withbusiness processes, patient safety, to lawsuits against
hospitals if not anticipated.
Conclusion: Cyberattack threats can occur to hospital
data through HMIS. A standard operational procedure isneeded to monitor and evaluate HMIS to minimize theoccurrence.

Eubios Journal of Asian and International Bioethics 28 (September 2018)

152
Keywords:
ransomware

cybersecurity,

cyberattacks,

HMIS,

Introduction
The hospital as a work organization certainly needs asoftware to manage business processes in the form of
Hospital Management Information Systems (HIS). The
existence of HMIS is very helpful for stakeholders inmanaging various units within the hospital, from patientregistration systems, medical record systems, laboratory
information systems to billing systems (MoH, 2013). The
types of HMIS , both free / open source and paid, face thesame challenges, and need to be integrated (Alsafar et al,2017). The integration of HMIS with other vertical andhorizontal health system elements is part of the roadmap
of national health information system development
roadmap (HIS) (MoH, 2015).
HIS communication with various elements of thesystem through the internet is at risk to attack HMIS
security. The Wannacry ransomware attack in early2017 against several hospitals at Indonesia and othercountries (Nangoy & Da Costa, 2017). In addition, patientelectronic medical record data contained in HMIS has
economic value for hackers. Electronic medical record
data can be traded on the dark web for up to USD50 per
patient (Filkins et al, 2016). This will certainly disrupt
business processes up to a complaint of patients to thehospital.
Data security in HMIS is very important. This is because
data security is related to medical records andconfidentiality of patient data. Data security and medical
confidentiality of patients has been regulated in theRegulation of the Indonesian Ministry of Health (MoH)
No. 269 of 2008 on Medical Records, Health Minister
Regulation No. 36 of 2012 on Medical Secret, Law No. 29
of 2004 on Medical Practices, Article 332 of the Criminal
Code and Law Number 44 of 2009 on Hospitals. In
addition, acording to the Indonesian Medical Ethics Codeyear 2012, the confidentiality and patient medical data
are very important. Therefore this publication will
discuss cyber security threats like what can happen to
HMIS and what should be done by the hospital toprevent it.
Methods
This study uses a literature review method from journals,
web articles and also cyberattack reports both fromwithin and outside Indonesia in the last 2 years. Data
from various sources of literature will be classified toconsider what forms of cyberattack have the potential tooccur against HMIS.
Results And Discussion
In two years, the incidence of cyberattacks has increased.
HealthcareITNews report states that up to August 2018
there have been 42 cases in 2018 (Healthcare IT News,2018). While in 2017 there were 40 cases reported
abroad (Healthcare IT News, 2017). Domesticallyreports on cyberattack incidents against hospitals,
especially HMIS, were very limited such as ransomware
and healthcare facility web defacing (Nangoy & Da Costa,
2017). The types of attacks that often occur against HMIS

can be in the form of Phishing, Ransomware, DDoS, andinternal data leakage.
Phishing
Phishing is a term from the word ‘fishing’, where hackers
get control to access rights by utilizing system users'
weaknesses or inaccuracies (Rajivan &Gonzalez, 2018).
By obtaining this access control, hackers can enter thesystem then carry out activities such as data theft, data
hostage, and data damage. One of the biggest cases
occurred in July 2018 where 1.4 million patient medical
record data at Unitypoint Meriter Hospital, Wisconsin
were stolen by this method via email to employees. The
email was taken over by the hacker after the employee
was unsuspecting to click it. As a result hackers could
enter the hospital system and steal data from March 42018 to April 3, 2018 (Davis, 2018).
Ransowmare
Derived from the word ‘Ransom’ and ‘Software’ is one
form of a malicious program (Malware) which has thefunction of locking data to a system and then hostage it.
Victims will get a message to pay a certain amount of
ransom so that the data can be accessed again (Pope,
2016). In addition to Wannacry, there are several new
types of ransomware that have the potential to attack
health systems such as SamSam, OrangeWorm, andPetya. Losses caused by global Wannacry Ransomware
are reported to be US $ 500,000 in the form of ransoms
and business process disruptions estimated at millionsof dollars (Arjun, 2017). While Petya Ransomware has
caused Merck pharmaceutical companies to lose US$ 275,000,000 (Erman & Hussein, 2017).
DDoS (Distributed Denial of Service)
DDoS is an action in the form of an attack on a system bysending insistent data until the system out of service(Ayala, 2016). Boston Children Hospital in 2014
experienced a DDoS attack on their website and newactors were caught in 2018. Although not directly about
HMIS, DDoS attacks on the website have disrupted
service activities and caused the hospital's loss of US$ 300,000 (Departement of Justice, 2018)
Internal data leakage
Employee carelessness in managing hospital data
contributed to 7 out of 42 cases of medical data leakage
in 2018 to September (Healthcare IT News, 2018). Leaks
can occur intentionally such as misuse of data for sale,loosing laptop or personal misuse.
In addition to the four methods above, a variety ofnew, more complicated hacking methods emerged.
Hacking 1.5 million Singaporean health data in July 2018
is one form of complex, structured and planned hacking.
The hacker enters the system gap and then implements
the malware that works after the gap is closed. Malware
works to duplicate data and then sends it to hackers
from 1 May 2015 to 4 July 2018 (Tham, 2018). New
methods such as Cryptojacking are predicted to target
the health sector. Cryptojacking allows hackers to embedmalware into servers with the aim of using the server tomine digital currencies (cryptocurency). The impact isthat the server will experience a decrease inEubios Journal of Asian and International Bioethics 28 (September 2018)
performance due to the additional burden of
cryptojacking malware (Bloomberg, 2018).
Of the above cyber threats, patient health data is the
key. Economic value and the impact of misuse of patient
data can harm health services and patients. An ethicalreview requires health care providers to guarantee theprivacy, confidentiality and security of patient data fromthose who do not have the right to access it. Even sharing
data with third parties such as insurance requires
patient approval first (Ozair et al, 2015). In addition to
ethics, legal protection for patient data is also important
to ensure the security of the use of information
technology for health services. The United States ofAmerica has a regulation called Health Insurance
Portability and Accountability Act (HIPAA) which
regulates the security of personal health information(HHS, 2017). Europe has General Data Protection
Regulation (GDPR) which also regulates the safety ofpatient data (EPF, 2018). While Indonesia has no specificregulations governing the safety of patient data. But
implicitly there are regulations regarding the protectionof personal data that are spread in several regulations
such as population administration laws, information andelectronic transactions laws to health laws and theirderivatives (Hidayat, 2018 ; MoH, 2013). Also data
security and stability and data sharing agreements arealso implied in several regulations (Budiyanti et al,
2018)
Various forms of the cyber threat according to the
Canadian Cyber Incident Response Center can beprevented up to 85% because it is impossible for anelectronic system to be 100% safe (Ayala, 2016).
Healthcare Information Management and System Society(HIMSS) recommends a standard operating procedurefor hospitals to conduct cybersecurity testing
periodically at least 2 times a year so that the systemvulnerabilities found can be immediately patched(HIMSS, 2017). Whereas in terms of humans, improving
knowledge of Cyberhygiene to hospital employees can
reduce the risk of data leakage from within (Ayala, 2016).
Routine data backup protocols and data disasterrecovery planning (data disaster recovery) should also
be prepared if a cyberattack occurs (Ayala, 2016).
Conclusion
HMIS which is integrated with various elements ofhealth has the potential to be susceptible to attacks thatcan eliminate, damage, or hostage patient data. Somethreats that can occur are phishing, ransomware, DDoS
to internal data leakage. Preventive actions such as
cyberhygiene socialization, scheduling cybersecurity
testing to disaster recovery data protocols can minimize
the risk and impact of cyberattack on HMIS.
Refferences

Alsaffar, M., Yellowlees, P., Odor, A., & Hogarth, M. (2017). The
State of Open Source Electronic Health Record Projects: A
Software Anthropology Study. JMIR Medical Informatics, 5(1),e6. http://doi.org/10.2196/medinform.5783
Ayala, L. (2016). Cybersecurity for Hospitals and Healthcare
Facilities: A Guide to Detection and Prevention. Apresa:
Virginia, USA.
Bloomberg, J (2018). Cryptojacking Displaces Ransomware As
Most
Popular
Cyberthreat.
Availablefrom:https://www.forbes.com/sites/jasonbloomberg/2018/07/2

153

9/cryptojacking-displaces-ransomware-as-most-popularcyberthreat
Budiyanti, RT., Arso, SP., Herlambang, PM. (2018). Rekam Medis
Elektronik Berbasis Cloud dalam Perspektif Etika dan Hukum
di Indonesia. Cermin Dunia Kedokteran, 45(9):695-698.
Availablefrom:
http://www.kalbemed.com/Portals/6/15_268Rekam%20M
edis%20Elektronik%20Berbasis%20Cloud%20dalam%20P
erspektif%20Etika%20dan%20Hukum%20di%20Indonesia.
pdf
Davis, J. (2018). 1,4 Million Patient Records Breached inUnityPoint Health Pishing Attack. Available from:https://www.healthcareitnews.com/news/14-millionpatient-records-breached-unitypoint-health-phishing-attack
Department of Justice. (2018). Jury convicts Man Who Hacked
Boston Children’s Hospital and Wayside Youth and Family
Support
Network.
Availablefrom:https://www.justice.gov/usao-ma/pr/jury-convicts-manwho-hacked-boston-childrens-hospital-and-wayside-youthfamily-support
Erman, M., & Hussain, NZ., (2017). Merck Cyber Attack May Cost
Insurers $275 Million : Verisk’s PCS. Available from:https://www.reuters.com/article/us-merck-co-cyberinsurance/merck-cyber-attack-may-cost-insurers-275million-verisks-pcs-idUSKBN1CO2NP
EPF.(2018).
EPF
Privacy
Policy.
Availablefrom:
http://www.eu-patient.eu/About-EPF/epf-privacy-policy/
Filkins, B. L., Kim, J. Y., Roberts, B., Armstrong, W., Miller, M. A.,
Hultner, M. L., … Steinhubl, S. R. (2016). Privacy and security
in the era of digital health: what should translational
researchers know and do about it? American Journal ofTranslational Research, 8(3), 1560–1580.
HHS (2017). Your Rights Under HIPAA. Available from:https://www.hhs.gov/hipaa/for-individuals/guidancematerials-for-consumers/index.html
Healthcare IT News. (2017). Biggest Healthcare Breaches 2017.
Availablefrom:https://www.healthcareitnews.com/slideshow/biggesthealthcare-breaches-2017-so-far?page=1
Healthcare IT News (2018). Biggest healthcare Breaches 2018.
Availablefrom:https://www.healthcareitnews.com/projects/biggesthealthcare-data-breaches-2018-so-far
Hidayat, R (2018). Yuk Simak, Perlindungan Data Pribadi yang
Tersebardi
UU.
Availablefrom:https://www.hukumonline.com/index.php/berita/baca/lt5aa2522899af7/yuk-simak--perlindungan-data-pribadi-yangtersebar-di-beberapa-uu
HIMSS (2017). 2017 HIMSS Cybersecurity Survey. Available
from: https://www.himss.org/sites/himssorg/files/2017HIMSS-Cybersecurity-Survey-Final-Report.pdf
Kharpal, A. (2017). Hackers who Infected 2000 Machines Have
only Made $50000 Worth of Bitcoin. Available from:https://www.cnbc.com/2017/05/15/wannacryransomware-hackers-have-only-made-50000-worth-ofbitcoin.html
Marsh & Oliver Wyman. (2018). Holding Healthcare to Ransom:
Industry Perspective on Cyber Risks. Available from :http://www.verizonenterprise.com/resources/protected_he
alth_information_data_breach_report_en_xg.pdf
MoH. (2013). Hospital Management Information System
Guideline. Jakarta: Ministry of Health of the Republic ofIndonesia.
MoH. (2015). 2015-2019 Health Information System Roadmap
Guideline. Jakarta: Ministry of Health of Indonesia.
Nangoy, F., & Da Costa, A. (2017). Two major Indonesian
hospitals attacked in 'ransomware' storm. Retrieved fromhttps://www.reuters.com/article/us-cyber-attackindonesia/two-major-indonesian-hospitals-attacked-inransomware-storm-idUSKBN1890AX

154

Eubios Journal of Asian and International Bioethics 28 (September 2018)

Pope, J. (2016). Ransomware: Minimizing the Risks. Innovationsin Clinical Neuroscience, 13(11-12), 37–40.
Rajivan, P., & Gonzalez, C. (2018). Creative Persuasion: A Studyon Adversarial Behaviors and Strategies in Phishing Attacks.
Frontiers
in
Psychology,
9,135.
http://doi.org/10.3389/fpsyg.2018.00135
Tham, I. (2018). Personal Info of 1,5 M SingHealth Patients,
Including PM Lee, stolen in Singapores’s Worst Cyberattack.
Availablefrom:https://www.straitstimes.com/singapore/personal-info-of15m-singhealth-patients-including-pm-lee-stolen-insingapores-mostRole of Ethics in Hospitality
and Tourism Industry
Amrit Kumar Dhimal,
Kathmandu, Nepal
Email: dhamrit_007@yahoo.com
Introduction
Tourism is currently one of the top industries driving the
global economy, with all countries having an increased
opportunity to play a part either as the source market or
the tourism destination. There is growing concern of
ethics in both the hospitality and tourism industry as
these professionals are faced with lots of ethicaldilemmas in their daily operations. By nature, tourism
industry products to a large extent depend on culturaland environmental resources. The industry involves
activities that are continuously interacting with nature.
Tourists’ interest to visit different places leads toincreased clearance of various natural areas for the
purpose of developing hotels and resorts. Organic andsolid wastes produced by the hospitality industry may
contribute to environmental pollution.
In addition to the interactions with natural system,
tourism activities involve both direct and indirectcontact between local community and tourists. Like agro
tourism and eco- tourism involve direct interaction
whereas mass tourism has lesser direct involvement. In
both situations, however contacts between hostcommunity and tourists cause various problems such asimportation of new culture and lifestyle, overcommercialization of cultural commodities and conflictof values. Most of these problems are ideally ethical innature as they lead to pollution, economic imperialism,
environmental degradation, depletion of natural
resources as well as sexual abuse.
As a result of these numerous ethical issues, there has
to be a global acknowledgement of the need to think
about the concept of sustainable or responsible tourism.
Sustainable tourism: it is that which creates better places
for tourists to visit and local community to live in. This
form of tourism broadens the concept of sustainable oreco-tourism to include environmental, ethical and social
considerations.
Responsible tourism: this form of tourism is relatedwith all type of tourism that have reverence to thedestination, cultural and natural environment and theinterests of all involved parties. It will reduce harmfulenvironment, social as well as economic impacts. And

will create more economical benefits for the hostcommunity and improving the overall interests of thedestination.
Ethical principles include integrity, fairness, honesty,
respect, attitude, leadership, accountability, loyalty andtrustworthiness. Promoting these values in hospitality
and tourism industry may cost some money in shortterm but they are likely to contribute to the long term
success of the organization as well as the better future of
the nation. Hospitality professionals is faced with an
ethical dilemma of whether to give priority to profits orthe customers. Ethics has a positive relationship withprofits and overall success of an organization which willdefinitely help a country to move ahead in best economic
condition. Creating a strong ethical environment in those
sector can result in increasing a flow of the tourist fromdifferent part of world which leads a country to a
successful destination and one of the greatest in theworld.
Conclusion
Ethics is essential in every aspect of life. Ethics willreflect the nature of the person as well as theorganization. In the hospitality and Tourism sector,
Ethics will play a vital role to lead the organization
towards the successful way. Hospitality and Tourism
industries are the best source of economy of the nation.
It will drive the nation to the development, prosperity
and peace. To build up and improve these industry,
attitude and the behavior of the person who does involveon this sector is very crucial. For example, if the managerof the company leads the team with a good attitude,
equality and respect to the fellow staffs then theoutcome of the staffs will be productive which may keep
the reputation of the industry will be high forever. Since
the Tourism sector is one of the pillars as well as thevertebrate of the Nation in terms of the sources of
economy, the ethical attitude and the behavior of thepersons, attached with this sector will play an extreme
role to guide it to greater success.

Ethical Challenges of the Zika
Epidemic- Ann Boyd*, Caylee Marie Winpigler, Enrique Figueroa
Professor of Biology, Hood College, 401 Rosemont Ave,
Frederick, MD 21701 USA
Email: boyda@hood.edu
Introduction
Zika virus provides a case study for the intersectionof science and ethics. The occurrence of formerly
unreported cases of microcephaly following Zika
infection of a pregnant woman caused the World HealthOrganization to declare Zika a global public healthemergency in 2016. The virus was first described in1947 and has caused sporadic outbreaks in Southeast
Asia and several Pacific islands. The infections were
described as mild febrile illness that were resolved bytreating the symptoms.
Like other viruses in the Flavivirus family, Zika
infection is primarily the result of a mosquito bite but isEubios Journal of Asian and International Bioethics 28 (September 2018)
distinct in causing Congenital Zika Syndrome (CZS).
Reports from Brazil of microcephaly in neonates
attracted attention and highlights several ethicalconcerns. Health care access, reproductive rights andcare for children with disabilities are social justice issues.
Newly developed experimental vaccines raises questions
about testing in a challenge design or by recruitment ofvolunteers within the outbreak. The Zika pandemic
raises many ethical questions, the two addressed in thispaper are reproduction and vaccine related.
Zika Virus
In 2015 a large outbreak of Zika virus occurred withcases of microcephaly in fetuses born to women infectedduring pregnancy. This was a new pathology not
associated with other viruses in the Flavivirus family
which includes Dengue, Chikungunya, Yellow Fever andWest Nile Virus.
Zika was first isolated in 1947 from the blood of arhesus macaque in the Zika Forest of Uganda. The firstrecognition of human illness caused by Zika occurred in
Nigeria in 1953. The three cases were described as amild febrile illness. A 2007 outbreak on the Yap islands
resulted in an estimated 5000 infections within apopulation of 6700 (Duffy et al., 2009). Subsequent
outbreaks in French Polynesia occurred in 2013
involving 32,000 persons. Zika virus infections werereported in other Pacific islands and Southeast Asia
(Cao-Lormeau, et al., 2013).
Spread of Zika virus in the Western hemisphere was
first reported in Brazil. The Ministry of Health estimatedover a million suspected cases within the year and noted
an increase in the number of infants born withmicrocephaly. Within five months, 4300 cases of
microcephaly were documented and in retrospective
studies, of French Polynesian health care professionals
confirmed an increase in fetal abnormalities as well.
Finding Zika virus RNA in the amniotic fluid and brain
tissue of fetuses with microcephaly added confidence tothe causal relationship between Zika virus infection of
the pregnant woman, her fetus and the consequential
birth defect (Rasmussen et al., 2016).
Zika is transmitted by Aedes aegypti mosquito andmoves perinatally from mother to fetus. Subsequent
analysis of blood and semen revealed the virus also may
be transmitted person to person through sexualintercourse and blood transfusion. The first confirmed
person to person case occurred in a patient in Rio deJaneiro, Brazil (Calvet et al., 2016). By the late spring of
2016, 61 countries had reports of locally acquired casesof Zika. In February 2016, the WHO declared Zika virus
disease a public health emergency of international
concern.
Emergent virus
Zika may have emerged along with global increases inthe spread of other Flavivirus, such as Dengue.
Globalization and urbanization in an era of climatechange contributes to more cases and an expanded
geographical reach. Whether mutations in Zika
contributed to microcephaly is a topic of current
research focused on a better understanding of the full
spectrum of clinical outcomes resulting from fetal Zika
virus infection (Peterson et al., 2016)

155

In the “sylvatic cycle,” Zika virus circulates between
non-human primates and the Aedes mosquitoes. The“urban cycle” features virus circulating between humans
and domestic mosquitoes. Until 2007, Zika was confined
primarily to the sylvatic cycle with rare humaninfections. The virus can transmit through at least 20
species of mosquito, and as such, the vector-borne
spread encompasses the demographics of the vector.
Zika’s recent epidemiological profile illustrates how
rapidly mosquito borne virus can transition from local to
global (Fauci and Morens 2016).
Zika virus evolution based on genetic relationshipamong isolates reveal two clusters, one representing theAfrican lineage and the Asian lineage. The most sensitive
diagnostic method is detection of RNA by Reverse
Transcriptase – Polymerase Chain Reaction (RT-PCR).
Viral RNA can be detected in the first seven days of thedisease in serum and amniotic fluid (Mlakar et al., 2016).
Molecular tests are more sensitive than antigen or
antibody based tests but may not be readily available.
Differential diagnosis of Zika from Dengue and other
Flaviviruses can be done by Plaque Reduction
Neutralization Titer (PRNT) assay and RT-PCR (Singh etal., 2016).
Climate Change Impact
Global warming and climate changes have redefined
the geographical distributions of important vectors ofarthropod-borne viruses. The “Congenital Zika
Syndrome” led WHO to declare the ZIKV epidemic a
global public health emergency. Whereas other
Flaviviruses may transfer from mother to fetus andcause preterm delivery and encephalopathy, Zika is the
only virus of the group to be associated withmicrocephaly. Other viruses such as cytomegalovirus(CMV) and measles when acquired in vitro may also
cause microcephaly (Chan et al., 2010).
Prevention and Control Strategies
Prevention and control of Zika virus is focused on
vector control and protection from mosquito bite andperson to person transmission. Vector control can bebased on mechanical removal of standing water as
breeding areas for female mosquitoes. Chemical control
uses pyrethroids, organochloride or organophosphorus,
compounds that are toxic to mosquitoes and otheranimals. N,N-diethyl-meta-toluamide (DEET) is aneffective insect repellent safe for pregnant women. Plant
extracts such as Citronella is an effective repellent. In
work originally aimed at controlling Dengue, femalemosquitoes infected with a Walachia parasite pass it intheir eggs after mating with wild male mosquitoes andthe next generation is resistant to Dengue and Zika
viruses. The project, “Eliminate Dengue” has released
mosquitoes in more than 40 areas in Australia, Vietnam,
Indonesia, Colombia and Brazil. If shown to beenvironmentally safe and sustainable, the remaining
question will be whether fewer infectious mosquitoes
mean fewer human infections (Sevick, 2016).
Vaccines
Developing a protective vaccine is a long process.
Scientists are expanding efforts to create a vaccine
against Zika following methods used for Dengue andYellow Fever. Ideally vaccines should be protective

156

Eubios Journal of Asian and International Bioethics 28 (September 2018)against infection known as “sterilizing immunity.” Thefirst of three experimental Dengue vaccines to belicensed was the Sanofi Pasteur, Dengvaxia, a live
attenuated Yellow Fever vaccine backbone with genes
from Dengue virus four serotypes spliced into the Yellow
Fever genome. It was administered to children in thePhilippines and some of the children developed a severe
forms of disease, prompting questions about the safetyof the vaccine. The little-understood phenomenon,
antibody-dependent enhancement (ADE), is observed
when a second infection by a different serotype ofDengue occurs and the person has antibody against thefirst serotype infection. Antibody to the first serotype
can cross react with the second in a way that increases
virus uptake in host cells leading to increased viremia
and decreased immune clearance. Two groups working
on other Dengue vaccines learned that it is important todetermine if a person has antibody to any of the four
serotypes before administering the vaccine. DENVax
developed by Takeda is a Dengue serotype 2 genome
with key genes from the other three dengue serotypes.
TV003/TV005 is a National Institute of Allergy and
Infectious Diseases and Butantan Institute vaccine using
wild type strains with genetic mutations engineered toreduce virulence. Results from phase III trials are duelate 2018 (Normille, 2017).
Reproductive Ethics
The highest case rate of microcephaly with 4,300
cases dating from 2015 was reported from Brazil where
health care resources are limited and in a particularly
impoverished region. Care of a microcephalic childposes a dilemma for mothers with other children.
Responding to the crises, the Brazilian Ministry of Healthpublished guidelines with recommendations regarding
family planning. In Brazil, abortion is illegal. The Zika
emergency illuminates inequities in the healthcare
system and lack of reproductive health services alongwith restrictive abortion laws (Dinz et al., 2018).
Latin America accounts for 40% of the world’s
population of Roman Catholics and as of 2014, 69% of
Latin Americans identify themselves as Catholic. The
Magesterium (teaching authority of the Roman Catholic
denomination) opposes contraception and abortion
which in turn has influenced the policies of the regional
governments. Recommendations vary across countries,
some recommending women postpone pregnancy for 612 months during the outbreak. In order to reduce
spread of the ZIKV and prevent more cases of
microcephaly. Abstinence policies are not overtly
negative, but they are not easy to follow either without
realistic and practical support. One undergraduate
observed: “Latin American countries have given womena recommendation without providing resources for themto fulfill it.”
Family planning services including contraception andsex education are highly effective ways for women tocontrol their bodies but services are not wide spread oreasily accessible. Contraception can include products
other than condoms, such as intrauterine devices which
in some cases prevent pregnancy. One such devise wasadded to the World Health Organization Essential
Medicines List in 2015 but only Chile among fifteen
countries in Latin America provided the device to the

public (Ali et al., 2017; Jamrozik and Selgelid, 2017).
Women resort to unsafe abortions to avoid unwanted
pregnancies or high-risk pregnancies especially innations with vigorously enforced criminal abortion law.
In the face of a public health emergency, governments
struggle to balance public health interests such as
compulsory containment, contact tracing, andmandatory reporting against personal autonomy andprivacy.
Under the International Covenant on Economic, Social
and Cultural Rights, the Committee on Economic, Social
and Cultural Rights addresses the issue: “the right tosexual and reproductive health entails a set of freedoms
and entitlements.” The freedoms include the right tomake free and responsible decisions and choices, free ofviolence, coercion and discrimination, over mattersconcerning one’s body, sexual and reproductive health.
The entitlements include unhindered access to a whole
range of health facilities, services and information, which
ensure all people full enjoyment of the right to sexualand reproductive health under article 12 of the Covenant”(Diniz et al., 2016).
In principle, reproductive health rights should apply
to the control of and promotion of reproduction.
Brazilian law does not bar a woman’s use ofcontraception, but it also does not provide all women
access to it. It is ironic that the Ministry of Health would
direct women to avoid becoming pregnant during theheight of the Zika outbreak without providing access tocontraceptives. To punish any attempt to terminate
affected pregnancies is callous. In the words of Dinez eta.l (2016): “Politicians’ indifference to, if not sympathy
with religious opposition to, lawful, safe abortion isliable to remain while they and their families areunaffected. Disadvantaged women with low incomes
have to face hazardous pregnancies and legal constraints
on termination, whereas, ‘middle- and upper-class’
women, who have the means to seek a private clinic, cancount on a wide net of abortion and post-abortion
services – clandestine in many cases but also a few thatare somewhat more mainstream – usually undisturbed
by the legal prohibition or enforcement agencies…Thisdisparity is a key element in keeping the widespread
opposition to abortion intact, since a change in thelegislation is much less important for the most politicallyand economically influential segments of society giventhat they do, to a large extent, get the appropriate
abortion services they need…and avoid any negative
consequences to their social, moral and religious
standing.” Class discussion raised the point that whereas
less restrictive abortion laws would ease the burden on
some women, it would be preferable to have equal
access to reproductive planning services at all times.
Recommendations that women avoid or delay
pregnancy, practice safe sex or abstain from sex during
pregnancy all assume that women in affected regions
enjoy high levels of reproductive freedom and selfdetermination. Restrictive abortion laws in many
countries in Latin America leave women who may wish
to discontinue their pregnancies with little access to safe,
legal termination and leave them exposed to the risks ofunsafe procedures. The International Planned
Parenthood Federation: “poor women and adolescentsliving in rural areas, where mosquitoes are a part ofEubios Journal of Asian and International Bioethics 28 (September 2018)
everyday life, are more susceptible to infection and lesslikely to have access to sexuality education,
contraception, and safe abortion services where legal. In
Brazil, for example the epidemic is concentrated among
young women of color living in the least developed areasof the country” (Davies and Bennett, 2016). Zika represents ethical issues of long-standing concern inbioethics such as those related to prenatal testing for
fetal malformations and global disparities in healthoutcomes.
Children’s rights
Brazil ratified the Convention on the Rights of theChild (CRC) and the Convention on the Rights of Persons
with Disabilities (CRPD). Consequently Brazil has
promised to provide assistance “free of charge,
whenever possible, taking into account the financial
resources of the parents or others caring for the child,and shall be designed to ensure that the disabled childhas effective access to and receives education, training,
health care services, rehabilitation services, preparationfor employment and recreation opportunities in amanner conducive to the child’s achieving the fullest
possible social integration and individual development”(Diniz et al., 2016; Brasil et al., 2017).
Zika vaccine ethics
The most efficient and cost effective prevention of avirus is a vaccine. Eradication of smallpox is the proof ofwhat an effective vaccine can do. Contemporary creationof vaccines employ biotechnology and recombinant DNA
techniques. The ideal vaccine mimics a normal infection,
triggering antibody that can neutralize the virus (block
its attachment to a new host cell) and cell-mediatedimmune clearance of virus infected cells. Full protection
requires both arms of the immune response in order tobe fully protective. Any vaccine offered in a new
pandemic such as Zika would be experimental. Thus the
ethical question is what kind of testing for a Zika vaccine
is reasonable and ethical?
Should women who are pregnant and at risk ofinfection be given special consideration for vaccinationor should be get other preventative help such as
mosquito control? Is it exploitative to take an unprovenvaccine into a community suffering high infection rates?
What is the risk-benefit ratio and how does one calculate
it when the vaccine is not yet proven protective?
To avoid charges of exploitation, an alternative todetermining the merits of an experimental vaccine is achallenge study. Herein, the vaccinated subjects would
be given a (challenge) infectious dose of Zika. Placebo
controls would become infected whereas the vaccinatedpersons “should” resist infection. This approach would
rely on fully autonomous individuals volunteering withfully informed consent in a place not in the midst of an
outbreak.
Shah, S.K. et al. (2017), released a report and set ofrecommendations on the “Ethical considerations for Zika
virus human challenge trials.” In the executive summary
the authors answer the questions: Can a Zika virus
human challenge trial be ethically justified? If so, underwhat conditions? “Given the potentially devastating
effects of Zika infection during pregnancy, the insidiousnature of the disease, and the promise of what can be157

learned from human challenge trials, the writing
committee, concluded that a Zika virus human challenge
trial could be ethically justified if certain conditions were
met. However, at this point in time, based on what washeard at the consultation meeting and on our review ofthe latest scientific and ethics research, the writing
committee has determined that these conditions
preclude the conduct of a Zika virus human challenge
trial, as detailed in the body of the report.” (Shah et al.,2017). Conducting such a study should recognize a clear
potential for public health impact and there should not
be alternative means to gather the same information.
The study should collect and produce reliable, relevant
data. The committee did not recommend challenge trials
based on social benefit analysis that considered thefollowing questions: Are vulnerable populations
protected? Is there a robust informed consent process?
Is the level of compensation adequate but not undue? Is
the right to withdraw respected? Have independent
expert reviews been conducted? Is there a system ofcompensation for injury? Is there a plan for community
engagement?
Students debated the ethical justification for achallenge study vs. experimental vaccine trials in the
midst of an outbreak. Issues discussed werecompensation risk being coercive; recruiting homelesspeople or those in need of health care, as vulnerable
population more likely to be exploited in the name ofscientific research. Much concern was raised overwhether pregnant women should be included in thevaccine. Given the disappointing results of the firstreleased Dengue vaccine and reports of cross reactivity
between Dengue and Zika, the place and population
becomes even more sensitive an issue (Blackman et al.,2018). Current epidemiology of Zika is still emerging(Bambery et al., 2016). Alternatively, a field trial among
at-risk individuals raises questions too. The number of
Zika cases has dropped so sharply that it may be difficult
to do field trials. If a virus is not spreading, theprotectiveness/effectiveness of the vaccine cannot bemeasured (Cohen 2017).
Vector Control
Alternative to vaccine, protection of people against
Aedes mosquitoes could provide a solution that protects
against all the viruses borne by this vector. It is a key
public health recommendation for mosquito borne viraldiseases. Insecticide use has led to resistance in Aedes
mosquitoes. New technologies such as Walachia infectedmosquitoes designed to interfere with reproduction may
be ecologically safer than genetically modified
mosquitoes, a conjecture without supporting scientificdata. (Resnik, 2014).
Summary
Zika as a case study illustrates how profoundly
injustices in resource distribution and healthcare
anywhere in the world is a threat to everyone in theworld. It is clear that the hardest hit communities lackaccess to basic preventive measures such as mosquito
nets, contraception, maternal health services. Global
attention to the plight of the underprivileged reveal how
local epidemics become pandemics through population
movement, urbanization, deforestation, and climate

158

Eubios Journal of Asian and International Bioethics 28 (September 2018)change. Sadly those most at risk to climate change
disease burdens are those who contributed least to
carbon emissions (Jamrozik and Selgelid 2017).
Outbreaks of Zika illustrate the interconnectedness ofhumanity in a world of airplanes and social media.
People within an outbreak depend upon WHO andinternational help for fast and accurate communicationof new hotspots of infectious diseases. Public Healthservices are charged with a rapid response to a crisis,
educating the public to reduce stigmatization of victims
and curtailing transmission of the virus. As disease
outbreaks challenge public health resources andinternational collaboration, they provide interesting,timely and relevant material for ethics education.
References

Duffy, M.R. Chen T-H, Hancock WT, AM Powers, JL Kool, RS
Lanciotti, M Pretrick, M Marfel, S. Holzbauer, C Dubray, L
Guillaumot, A. Griggs, M. Bel, A. J. Lambert, J. Laven, O. Kosoy,
A. Panella, BJ Biggerstaff, M. Fisher, EB Hayes. . Zika virus
outbreak on Yap Island, Federated States of Micronesia,
NEJM 2009; 360:2536-43
Cao-Lormeau VM, Roche, C, Teissier, A et al., Zika Virus, French
Polynesia, South Pacific, 2013. Emerg Infect Dis 2014; 20:1085-6
Rasmussen SA, Jamieson DJ, Honein MA, Petersen LR. Zika
Virus and Birth Defects – Reviewing the Evidence for
Causality. N Engl J Med 374: 1981-1987, 2016.
Calvet GA, Filippis AM, Mendonca MC, Sequeira PC, Siqueira AM,
Veloso VG, Nogueria RM, Brasil P. 2016. First detection of
autochthonous Zika virus transmission in a HIV-infectedpatient in Rio de Janeiro, Brazil. J Clin Virol 74: 1-3.
Peterson LR, Jamieson DJ, Powers AM, Honein MA. Zika Virus. N
Engl J Med 374:1552-1563, 2016.
Fauci AS and DM Morens. Zika virus in the Americas – yetanother Arbovirus threat. N Engl J. Med 374: 601-604(2016).
Mlakar, J., M. Korva, N. Tul, M. Popovic, M. Poljsak-Prijateli, J.
Mraz, M. Kolenc, K. R. Rus, T. V. Vipotnik, V.F. Vodusek, A.
Vizjak, J. Pizem, M. Petrovec, T.A. Zupanc. Zika Virus
Associated with microcephaly. N Engl. J. Med. 374: 951-958(2016).
Singh RK, Dhama K, Malik YS, Ramakrishnan MA, Tiwari KR,
Saurabh S, Sachan S, and SK Joshi, Zika virus – emergence,evolution, pathology, diagnosis, and control – acomprehensive review. Veterinary Quarterly 36 (3): 150-175(2016).
Chan JFW, Choi GKY, Yip CCY, Cheng VCC, Yuen K-Y. Zika feverand congenital Zika syndrome: An unexpected emerging
arboviral disease. Journal of Infection 72: 507-524 (2016).
Servick K, Biting Back. Science 354:154-167, 2016.
Normile, D Safety concerns derail dengue vaccination program,
Science 368: 1514-1515, 2017.
Diniz D, Gumieri S, Bevilacqua BG, Cook RJ, Dikens BM. Zika
virus infection in Brazil and human rights obligations. Int J
Gynecol Obstet 2016:1-6 doi 10.1002/ijgo.12018.
Ali, M., K. Miller and FR.F.G. Ponce de Leon. Family planning
and Zika virus: need for renewed and cohesive efforts toensure availability of intrauterine contraception in Latin
America and the Caribbean, European Journal ofContraception and Reproductive Health Care 22: 102-106(2017).
Jamrozik, E and MJ Selgelid, “Ethics, Health Policy and Zika:
From Emergency to Global Epidemics?” J. Med. Ethics 0:1-6(2017) doi 10.1136/medethics-2017-104387
Davies SE and B Bennett. A Gendered human rights analysis of
Ebola and Zika: locating gender in global health emergencies.
International Affairs 92: 1041-1060, 2016.

Brasil, P., J.P. Pereira, M.E. Moreira, R.M. Ribeiro Nogueira, L.
Damasceno, M. Wakimoto, R.S. Rabello, S.G. Valderramos, UA. Halai, T.S. Salles, A.A. Zin, D. Horovitz, P. Daltro, M. Boechat,C. Raja Gabaglia, P. Carvalho de Sequeira, J.H. Pilotto, R.
Medialdea-Carrera, D. Cotrim Da Cunha, L.M. Abreu deCarvalho, M. Pone, A. Machado Siqueira, G.A. Calvet, A.E.
Rodrigues Baiao, E.S. Neves, P.R. Nassar de Carvalho, R.H.
Hasue, P.B. Marschik, C. Einspieler, C. Janzen, J.D. Cherry, A.M.
Bispor de Filippis, and K. Nielsen-Saines, “Zika Virus
Infection in Pregnant Women in Rio de Janeiro, N. Engl. J.
Medicine 375: 2321-2334 (2016).
Shah, S.K., J. Kimmelman, A.D. Lyerly, H.F. Lynch, F. McCutchan,
F.G. Miller, R. Palacios, C. Pardo-Villamizar, C. Zorrilla, Ethicalconsiderations for Zika virus human challenge trials: Report
andRecommendation,(2017).
https://www.niaid.nih.gov/sites/default/files/EthicsZikaHu
manChallengeStudiesReport2017.pdf).
Blackman, M.A., I-J Kim, S. Lin, S.J. Thomas. Challenges of
Vaccine Development for Zika Virus, Viral Immunology 31:
117-123 (2018)
Bambery, B., M. Selgelid, C. Weijer, J. Savulescu, A.J. Pollard,
Ethical criteria for human challenge studies in infectious
disease. Public Health Ethics 9:92-103 (2016).
Cohen J. Where has all the Zika gone? Science 357:631-2,(2017).
Resnik, D.B. Ethical issues in field trials of genetically modified
disease-resistant mosquitoes. Dev World Bioeth 14(1): 37-46,(2014).

Global Challenges in Sustainable
Public Health- Ann Boyd*, Jeni Lacko, Grace Weaver, Juliet Traini and
Jenna Frick
Professor of Biology, Hood College, 401 Rosemont Ave,
Frederick, MD 21701 USA
Email: boyda@hood.edu
Introduction
Sustainable development requires practices andpolicies that protect human rights and simultaneously
encourages development of human flourishing, within an
ecosystem that is vibrant and healthy. It is counterintuitive to suggest that the animals and plants andhumans cohabitating on planet Earth are indestructible
or merely exists for the benefit of humans. The goal ofsustainable development is: “healthy people living on a
habitable planet” (Sachs, 2015 p1). Societies are diverse
in many aspects and universal in others. A virus thatspreads through a mosquito bite is immune to social
diversity: nature instructs them to feed and replicate andhuman infections are no more than bystander effects.
Emerging viruses such as Ebola reflect the delicate webof interactions between the ecosystem and humans.
Distribution of technology to diagnose, treat and prevent
diseases invite a stronger health care capacity. This
paper will explore and contrast theoretical and actual
responses to virus outbreaks, using the recent outbreakof Ebola in western Africa as a case study. Sustainable
development requires a safety net finely woven withthreads from economy, society, environment and politics.
Justice is the fair and equal treatment of human beings
according to their needs. Using a social contract

Eubios Journal of Asian and International Bioethics 28 (September 2018)
framework of justice embraces human rights andsustainable development.
Human Rights
Human Rights posits that every person, regardless of
their relative social position is inherently due theconditions necessary for wellness (Sachs, 2015 p 226).
Inherent in the Universal Declaration of Human Rights(UDHR) is the notion that every human being derives
rights simply by being human. Whether the document
continues to be universal can be tested in the reality of
infectious diseases that spread by vector or humanmobility. What humans need to sustain health andwellbeing is less controversial than who has the duty or
responsibility to provide reasonable availability ofresources needed to claim that right.
Psychologically, humans require social interaction,
relationships, and a sense of community. Physiologically,
humans need food, water, shelter and health care. The
concept of human rights recognizes the psychologicaland physiological dimensions. At the basic survival level,
meeting physical needs takes time, attention, and energy
with little left over for more liminal goals. In contrast, if aperson lives in a place where the basic necessities are
assured and does not need to struggle to survive, timeand effort can shift to developing new technologies,
improving community solidarity, and contributing tosustainable development.
UDHR grants all persons the right to health care
(Article 25). Sadly, individuals, nations, and institutions
may make choices that ignore or violate human rights
without evident consequences. It takes a vigilant
neighborhood watch approach to expose injustices. A
coordinated approach has more impact but it takes
committed individuals and responsive governments toprovide universal access to health care or any othersystem that provides an opportunity to claim one ormore human rights.
Failure to secure basic human rights for every
member of the human family only exacerbates existing
inequalities, widening the socioeconomic disparities
between individuals creating what Paul Farmer calls the“poverty trap”. No right can be a human right unless it isan equal right (Khatchodourian, 1985 p. 231). Humanrights invite active listening to those whose experiences
require empathy and responsiveness. What weunderstand about the plight of another may well informthe choices we make on a daily basis. One example is theway we measure development in terms countries Gross
Domestic Product (GDP). Certainly measurement of GDP
fails to consider other conditions that can affect humanwellbring. Many countries increase GDP by maximizing
energy and resource ‘throughput” without a future
vision of sustainability (Beddoe , 2009).
Sustainable Development Goals
The Sustainable Development Goals (SDG) wereadopted at the 70th Session of the United Nations in 2015.
The 17 goals endorsed by Heads of State andGovernment Leaders represent a universal, ambitious,
sustainable development agenda. In Table 1, the 17 goals
are listed with the principle objective and rated for
relationship to public health directly or indirectly. A
directly related goal such as extreme poverty affects the159

ability of a person to obtain sufficient food, shelter, cleanwater all of which reduces well-being and health. Quality
education indirectly affects health when a person lacks aclear understanding of how an infectious disease istransmitted and what can be done to prevent it. Ten of
the seventeen goals directly affecting public healthespecially outbreaks of infectious diseases such as Ebola.
It can be difficult to impress citizens of the world orof any one nation with the reality that all epidemics are
not infectious diseases. The obesity epidemic is an
example. In many parts of the world overeating is moreof a problem than famine. In rich communities’ residents
eat salad, while the poor neighbor miles away push away
hunger with a hamburger or pizza. In 2014 more than
2.1 billion people were overweight, compared to 850
million who suffered malnutrition. In 2010 famine andmalnutrition killed about one million persons whereas
obesity killed 3 million (Mokdad, et al. 2016).
Table 1: Sustainable Development Goals and theirrelationship to health
GOAL
GOAL OBJECTIVE
Relatedto#publichealth(yes-directly or
indirectly)
Goal 1 End Poverty
Yes directly
Goal 2 End Hunger
Yes directly
Goal 3 Well-Being
Yes directly
Goal 4 Quality Education
Yes indirectly
Goal 5 Gender Equality
Yes directly
Goal 6 Water and Sanitation for all
Yes directly
Goal 7 Affordable and Sustainable Yes directly
EnergyGoal 8 Decent Work for all
Yes indirectly
Goal 9 Technology to Benefit all
Yes directly
Goal
Reduce Inequality
Yes directly
10
Goal
Safe Cities and Communities Yes indirectly
11
Goal
Responsible Consumption Yes indirectly12by allGoal
Stop Climate Change
Yes directly
13
Goal
Protect the Ocean
Yes indirectly
14
Goal
Take Care of the EarthYes indirectly
15
Goal
Live in PeaceYes directly
16
Goal
Mechanisms
and Yes directly
17
partnerships to Reach Goals
Ebola outbreak in Western Africa
Historically infectious diseases were second only tohunger as a threat to human life and longevity. With theadvancement of science, development of vaccines,
antibiotics and antiviral drugs, the plagues of history
seem gone for good…until…another Ebola outbreakoccurred in 2013 in three nations of West Africa that had
never had a case of Ebola. This outbreak infected 28,000
people and 11,000 died. By early 2015, the epidemic wascontrolled by good public health initiatives: testing,isolation, contact tracing, and education. The WHO

160

Eubios Journal of Asian and International Bioethics 28 (September 2018)

declared it over in January 2016. It was a reminder thatepidemics still occur, but public reaction was critical of
WHO for not containing the outbreak faster. The false
assumption is that humans have the knowledge andtechnology to prevent or curtail plagues whenever andwherever they occur.
One lesson learned from the Ebola outbreak in West
Africa is the importance of health care infrastructure andtrained health care workers. Good health is at the centerof human well-being, a precondition for a person to be afunctional member of society (Sachs 2015, p275).
Anyone can be sick and unable to work. If a person lives
in poverty, the web of influence spreads: loss of wages
means lack of money to buy food, or pay for medical care
if it is even available. Being unable to afford medical
treatment, the person may recover more slowly and if
their disease is infectious in nature, they infect others.
Universal Access to Treatment
In the Ebola outbreak, lack of universal treatment leadto increased rates of transmission. Treatment (standardof care) for Ebola includes maintaining fluids, reducing
fever, and providing supportive care. If received,
standard of care can reduce the mortality rate by half.
Prompt and accurate diagnosis is a challenge if thedisease appears in a new region as it was in West Africa.
Providing health care workers with proper personal
protective equipment (PPE) helps protect them from
infection and allows them to work for the benefit of all
who are sick. Ebola spreads from person to person,
through exposure to bodily fluids. Funerary customs andclose living quarters increase probability of viraltransmission (Luge, 2015).
Reports of people going into a home to deliver foodunaware that a person inside was infected, or a
symptomatic person refusing to go to a hospital,
increased fear of the disease and stigma for those
infected. The idea that people could be exposed to a virus
with a 50% mortality rate, increased the focus on Ebola
Education. One of the keys to controlling the outbreak isin the form of better public education programs. It may
be necessary to recruit local representatives foreducating the public to get the best results.
Bubonic plague in the 14th century established goodpractices for limiting spread of an infectious agent
consisting of a quarantine zone and prohibition people
entering and leaving the zone until the outbreak wasover. To get supplies to the quarantine zone, help was
essential for food, water, medicines, equipment. Within
the zone, healthcare workers face a high risk of infection,
as they are in direct contact with symptomatic patients.
If the healthcare workers are contained within the zone,
it affects their families, and may result in a limited
capacity to care for the sick.
Increased air and sea travel changes the notion ofborders. Small to extreme differentials in transnational
inequality are exposed and play an important role inemergent disease transmission dynamics. Comparing theoutbreak in West Africa in 2013 with the most recent
outbreak in Congo illustrates several important lessons.
In Guinea, Sierra Leone and Liberia, infected individuals
would opt to stay home and be cared for by a family
member, or to travel to a medical facility in a nearby city.
The exposure of the household members and theircontacts spread the virus in widening concentric circles,
but the introduction of the virus into a city hospital has
the potential to send virus in radial arcs beyond the city.
The Democratic Republic of the Congo (DRC) has dealt
with seven Ebola outbreaks and is currently dealing withthe eighth. The health care workers and Ministry of
Health are well coordinated in dealing with the virus.
Two lab confirmed cases and 48 probably cases had 350
contacts, all of which were monitored. The location
where the outbreak occurred had few roads and bridges
necessitating supplies be delivered by helicopters.
Mobile labs were established, for testing and treatment
and containment. Quick, proper isolation of patients,
contact tracing and quarantine has worked in the pastand should limit this epidemic as well – unless one
infected person reaches a large city (Cohen, 2017).
Health Care System
WHO defines a health system as “built on having
trained and motivated health workers, a well maintained
infrastructure, and a reliable supply of medicines andtechnologies, backed by adequate funding, strong healthplans and evidence based policies?” (WHO. Healthsystems:
World
HealthOrganization
http://www.who.int/healthsystems/about/en).
The
unprecedented spread of Ebola has been explained inmany ways, such as human mobility between affected
countries, cultural practices like traditional burials andinefficient health system. Each of these three countries
have had civil wars with a negative impact on healthsystem infrastructure. In Guinea, health workforce
density is less than 1.5 per 10,000 population with threehospital beds per 10,000 people. Per capita government
expenditure on health is 9 US$ per year. Sierra Leone has
a workforce for health care of 2.2/10,000, 4 beds per
10,000 in hospitals, and equivalent expenditure, 12
US$ per year. Liberia has less than 3.7 health workers
per 10,000, about 8 hospital beds per 10,000 and per
capita expenditure on health of 13 US$ per year. All three
countries noted lack of medical supplies, transportsystems and diagnostic tools. It is important tosurveillance and isolation to have accurate and available
diagnostic tests. The outbreak is an educational casestudy in public heath, with lessons about how to build
resilient health systems, and invest in capacity building(Shoman et al., 2017).
Between 1 January 2014 and 31 March 2015, 815
cases (confirmed and considered probable) occurredamong health workers in the region (328 in Sierra Leone,
288 in Liberia and 199 in Guinea). An additional 225
suspected cases were reported but were not part of theanalysis. Nurses, Nurse Assistants and Nurse Aides
account for 50% of infections, and 77% of them were
hospitalized. However, the case-fatality ratio was notstatistically significantly lower than among nonhealthcare workers infected. Among health workers
39% were female and 61% male. In contrast among nonhealth workers 52% were female and 48% male. “It isdifficult to establish the setting where health workers
acquired the infection. They may have occurred in healthfacilities where triage may have not been effective andhealth workers unknowingly provided care to Ebola
infected patients. It is also possible that the infection was
acquired in the community with or without linkage toEubios Journal of Asian and International Bioethics 28 (September 2018)care provision” (WHO Preliminary Report, 2015). The
report lists a number of recommendations for future use,
including better point of care assessment and differential
diagnosis, better supplies and training, isolation of Ebola
patients from general patient wards, safe transport
vehicles, environmental controls, such as hygiene
stations, alcohol and chlorine based disinfectants,
disposal system, adequate PPE. Certainly healthcare
workers have rights to protection in an outbreak with amortality rate as high as Ebola’s. Governments need to
institutionalize policies to protect healthcare workers inorder to offer effective care and increase confidence inhealth system (Yakubu, et al., 2014).
Ebola is one of several “emerging” viral diseases.
Gaining visibility in press coverage has helped to give asense of urgency and to leverage funding for research. It
is difficult to limit an explanation to one discipline, eventhough virologists will claim expertise in the pathogenic
mechanism of the illness, and immunologists andvaccinologists will search for treatment and prevention
measures, emerging diseases are more complex thantheir biology. “Responsible factors include ecologicalchanges, such as those due to agricultural or economic
development or to anomalies in the climate; humandemographic changes and behavior; travel andcommerce; technology and industry; microbial
adaptation and change; and breakdown in public healthmeasures” (Farmer, 2010).
Certainly the fragile health system affected the lengthand penetrance of the outbreak. Limited numbers ofclinics for diagnosis and treatment, fear or lack ofunderstanding about transmission of the virus, andlimited resources in terms of health care workers andfacilities means everyone will not receive standard ofcare. This is the harsh reality of the conditions when the
Ebola outbreak spread across Guinea, Liberia and Sierra
Leonne. This outbreak demonstrated a real crisis andexposed the lack of sustainable health care staff andresources needed for an effective response (Gostin et al.,2014; Boozary et al., 2014).
Diagnosis: fast and accurate
Ebola outbreaks prior to 2013 were mainly inequatorial regions such as Congo. Familiarity with thesymptoms and being alert to the infection throughexperience means that an outbreak in Congo is more
likely to be recognized sooner than a few cases in Guinea
where until 2013, there had never been a case. Not
expecting Ebola, but having other hemorrhagic fever
virus infections such as Lassa Fever requires adifferential test that is quick and accurate. Different
testing strategies were used in this case. For example, in
Guinea deceased individuals were not tested for Ebola
meaning these persons were not counted as confirmed
cases, unlike in Liberia and Sierra Leone. Use of aconsistent protocol, case definition, will improve datacollection and analysis. Modern molecular techniquessuch as Reverse Transcription -Polymerase Chain
Reaction (RT-PCR) is sensitive, accurate, and differential,
but it requires the equipment, electricity, technicians to
run the assay. The method is available in the major city
hospitals in Liberia, Guinea and Sierra Leone, but
samples of blood have to be taken, labeled, andtransported and the results communicated. It may not161

yet be practical to expect comprehensive coverage ofvery rural societies. More effort should be made to
develop rapid spot tests even though less sensitive forpreliminary diagnosis, so that the alarm to trigger publichealth interventions can curtail the spread of the virus.
Collecting and analyzing data from an epidemic isessential to standardizing responses and learning themost efficient and effective interventions (Cori et al.,2017).
Human Right to Health Care
Human rights provide an ethical foundation for why
and how remote areas of the world ought to haveassistance in building a health care system to promote
and protect human health. National Human Rights
Institutions help societies and individuals move towardsustainability, ensure accountability to governments
who have a duty to create conditions wherein citizens
can claim their rights. These same organizations inconcert with government in nation-states can protect
human rights from exploitative systems (Jensen, et al.,2015). After citing this report, one undergraduate
observed: “In our endeavors to exercise the rights wehave been granted, we must take care so as not toinfringe upon the rights of other human beings. Each of
us is born into conditions that we cannot control. Where
and when we were born, and the resources that ourparents had factor into shaping our lives. …What mattersjust as much as the resources humans need to live a lifeof health and dignity are the ways in which we utilize theresources we have been given as we attempt to address
the problems at hand.”
Medicine and allied health sciences are marginallyinvolved in human rights advocacy. Fifty years ago, withthe crafting of the UDHR, Article 25 addressed healthwithin the broader social and economic rights:“Everyone has the right to a standard of living adequate
for the health and well-being of himself and of his family,
including food, clothing, housing and medical care andnecessary social services, and the right to security in theevent of unemployment, sickness, disability, widowhood,
old age or other lack of livelihood in circumstances
beyond his control.” The exclusive use of the malepronoun testifies to the age of the document. However, it
is sad to admit that so little progress has been made.
Paul Farmer rightly observes: “An irony of this global era
is that while public health as increasingly sacrificed
equity for efficiency, the poor have become wellinformed enough to reject separate standards of care.”(Farmer 2010).
It is humbling to include Human Rights in courses
taught in the United States at this time of politicaltension and policies that are contrary to the broad scopeof rights proscribed in the UDHR. Years ago Michael
Ignatieff warned in Human Rights as Politics and Idolatry,that hypocrisy too often is exposed in the actions nations
take. “Human rights is increasingly seen as the languageof moral imperialism just as ruthless and just as selfdeceived as the colonial hubris of yesteryear”(Ignatieff,2001, p19).
Human Rights should be recognized as universal, butunity is not uniformity. Human Rights advocates bear theburden of systemic misuse and hypocrisy, such as
happens when a nation violates civil or economic rights

162

Eubios Journal of Asian and International Bioethics 28 (September 2018)

within and points to human rights infringements within
another country. Sadly, my own country is guilty of thisand it is very difficult for students to recognize it. Allforms of suffering are not equivalent. Some harms
encompass subpopulations whereas others differentiate
on more personal criteria such as the ability to pay for
health care.
As science progresses in development of new
diagnostic tests and treatment protocols, our humancapacity to distribute them equitably lags. The poor, thevulnerable, women and children, migrants and illegal
aliens constitute a huge control group of the untreated.
Farmer is right in noting that “the withdrawal of statesfrom basic business of providing housing, education, andmedical services usually means further erosion of thesocial and economic rights of the poor.” (Farmer, 2010).
Perhaps it is time to recognize that consensus onhuman rights may find plurality in practical policies that
befit cultural differences. Charles Taylor suggests thatinternational consensus on human rights canaccommodate a diverse set of values on norms of
behavior without rejecting what humans have incommon (Taylor, 1999). It is not necessary to prioritize
the human species over all other life forms to embracerights. It only requires recognition of the fragility of thehuman person whereby the capabilities individual
persons need to function and live a life of dignity.
Nussbaum lists life, bodily health, bodily integrity, sense
cognition, emotions, practical reason, and affiliation infamilies, communities, play, awareness and relationshipwith world of nature, and control or influence over one’s
environment (Nusbaum, 2011). The requirements forhuman flourishing are the subject of the rights claims.
Correspondingly, the duty to provide conditions
wherein the holder of rights can make just claim is thenation state. Students insist that human rights arerecognized as an ideal: that the realization of them is lostin political chaos. They are cynical before they reach theend of the second decade of life that what seems obvious
is so difficult to achieve. They quote Rawls, “Original
position and veil of ignorance” over and over, from
freshmen to seniors, they say, “If we could only see thatthe poor person begging for food, trying to reach a safe
place to raise their children, acquire health care could be
me, we might act differently” (Rawls, 1971).
Ebola outbreak as case study
The Ebola outbreak is an excellent case study of how
interconnected people are in this world. The first case in
Guinea was December 2013 and within a year cases
were reported in Liberia, Sierra Leone, Senegal, Nigeria,
Spain and the USA. It is clear Ebola is a threat to publichealth for the global community. The principles andindividualistic focus of medical ethics fails to prioritize
global injustice and that was all too clear in the recent
outbreak. Experimental vaccines and monoclonal
antibody therapy in very limited supply were sent for
testing with no doubt an intent to help, yet none of the
products were known to be safe or licensed for humanuse.
It is worth ethical reflection on whether in the midstof a public health crisis, an experimental vaccine can beadequately tested. Would not anyone infected with avirus with a 50% chance of death be willing to accept an

unknown risk from an unlicensed preventive vaccine?
WHO committee reviewed the use of the vaccine and set
criteria that reflect the usual concerns about informed
consent, freedom of choice, confidentiality, respect forthe person, preservation of dignity, involvement ofcommunity (Dawson, 2015). Several of the expressed
criteria are generally considered part of an informed
consent process, even involvement of community insome cultural circumstances. Additional considerations
were given to transparency, trust, fair distribution in theface of scarcity which reflect the Helsinki guiding
principles. The committee concluded that it was goodand right to test experimental vaccines and treatments inthe best possible clinical trials under the circumstancesin order to prove or disprove their utility. What they did
not do was call upon nations to join in responding to a
public health crisis of unprecedented scope (WHO 2014).
Students discussed the situation and how direconditions seemed to be for the basic coverage of healthcare to those who were sick and protection of those notinfected. They could not imagine how a clinical trial
could be done in the middle of the epidemic without
either distracting from the primary care of patients, or
risking a charge of exploitation. The priority for a robust
public health effort to contain and combat the disease
would show the most solidarity with those living in theaffected region. Neglect of the public healthinfrastructure is an example of global injustice thatshould be addressed long ago and that is very apparent
in the Ebola epidemic.
Conclusions
To see in the other a reflection of myself is a way of
being in a diverse and complicated world. The real andequal value of human beings brings moral weight tohuman rights, especially in the context of a deadly viraloutbreak. The International Bill of Human Rights does
not base the common needs of human beings on a creed
or religious text, a particular strain of philosophical or
sociological or political thought, rather, it articulates theexperiential lessons learned from watching what
happens when we fail to treat humans humanly (Boyd,2014). The Ebola outbreak highlights the need foruniversal health care infrastructure as a global justicepriority. Testing vaccines and passive immunization with
antibody can be a straight forward way to determine
efficacy, but in the midst of the chaos of a medical
emergency, it raises questions unanswered as yet. It was
clear that foreign workers who became infected were
medically transported to home hospitals and not treatedin country. Does this not demonstrate in a global era, theneed for policy goals that resist a double standard for therich world and the poor world? We need a shift fromwhat went amiss in respecting and protecting humanrights in the context of public health to what we should
do. We need an agenda for action that builds trust andsolidarity within and among nations.
References

Sachs, JD (2015). The Age of Sustainable Development, Columbia
University Press.
Khatchadourian, H. (1985). “Toward a Foundation for Human
Rights” IN: Man and World, vol 18: 226-239.

Eubios Journal of Asian and International Bioethics 28 (September 2018)
Beddoe, R., R. Costanza, J. Farley, E. Garza, J. Kent. (2009).
“Overcoming Systemic Roadblocks to Sustainability: The
Evolutionary Redesign of Worldviews, Institutions, andTechnologies.” Proceedings of the National Academy of
Science of the United States of America, vol 106, (8): 24832489.
Mokdad, AH, MH Foruzanfar, F. Daoud, A.A. Mokdad, C.E.
Bcheraoui, M. Moradi-Lakeh, H. H. Kyu, R.M. Barber, J.
Wagner, K. Cercy, H. Kravitz, M.Coggeshall, A. Chew, K.
O’Rourke, C.Steiner, M. Tuffaha, R. Charara, E.A. Al-Ghamdi,
Y. Adi, R.A. Afifi, H. Alahmadi, F. AlBuhairan, N. Allen, M.
AIMazoa, A. Al-Nehmi, Z. AlRayess, M. Arora, P. Azzopardi, C.
Barroso, M. Basulaiman, Z.A. Bhutta, C. Bonell, C. Breinbauer,
L. Degenhardt, D. Denno, J. Fang, A. Fatusi, A.B. Feigl, R.
Kakuma, N. Karam, E. Kennedy, T.A.M. Khoja, F. Maalouf,
C.M. Obemeyer, A. Mattoo, T. McGovern, Z. Memish, G.
Mensah, V. Patel, S. Petroni, N. Reavley, D. R. Zertuche, M.
Saeedi, J. Santelli, S.M. Sawyer, F. Ssewamala, K. Taiwo, M.
Tantawy, R.M. Viner, J. Waldfogel, M.P. Zuniga, M. Naghavi,
H. Wang, T. Vos, A. Lopez, A. Al Rabeeah, G. Patton, C. J.L.
Murray, (2016). Global burden of diseases, injuries, and risk
factors for young people’s health during 1990-2013: asystematic analysis for the Global Burden of Disease Study
2013. Lancet 387: 2383-2401.
Luge, T. (2015). GIS support for the MSF Ebola response in
Liberia, Guinea and Sierra Leone: Case Study, Medecins,
Sans Frontieres, 2015 accessed August 2018 athttps://reliefweb.int/sites/reliefweb.int/files/resources/G
IS%20Support%20Ebola%202015_EN.pdf.
Cohen, J. (2017) New Ebola outbreak rings alarm bells early,
Science 356:788-789.
WHO Preliminary Report: Health worker Ebola Infections in
Guinea, Liberia and Sierra Leone, 21 (2015).
www.who.int.hrh/documents.
Yakubu, A., M.O. Folayan, N. Sani-Gwarzo, P. Nguku, K. Peterson,
B. Brown. (2014). The Ebola outbreak in Western Africa:
ethical obligations for care. J. Med. Ethics online Sept 2014
doi: 10.1136/medethics-2014-102434
WHO. Health Systems: World Health Organization
http://www.who.int/healthsystems/about/en.
Shoman, H. E. Karafillakis and S. Rawaf, (2017). The link
between the West African Ebola outbreak and healthsystems in Guinea, Liberia and Sierra Leone: A systematic
review, Global Health 13 doi 10.1186/s12992-016-0224-2.
Farmer, P. (2010). “Rethinking Emerging Infectious Diseases”
pp 151-155 IN Partner to the Poor (ed. Haun Saussy,
Berkeley, University of California Press .
Gostin, LO, D. Lucey, A. Phelan. (2014). The Ebola Epidemic: aglobal health emergency. JAMA 312: 1095-1096.
Boozary, A.S., PE Farmer, AK Jha. (2014). The Ebola Outbreak,Fragile Health Systems, and Quality of Care. JAMA 312:
1859-60.
Cori, A., C.A. Donnelly, I. Dorigatti, N.M. Ferguson, C. Fraser, T.
Garske, T. Jombart, G. Nedjati-Gilani, P. Nouvellet, S. Riley,
M.D. Van Kerkhove, H.L. Mills, I.M Blake. (2017). Key datafor outbreak evaluation: building on the Ebola experience.
Phil.
Trans.
R.
Soc.
B
372:
20160371
http://dx.doi.org/10.1098/rstb.2016.0371
Jensen, S.L.B., A. Corkery, K. Donald. (2015). Realizing Rights
Through Sustainable Development Goals: The role ofnational human rights institutions. The Danish Institute for
Human Rights: Center for Economic and Social Rights, June
2015, www.humanrights.dk/publications/realizing-rightsthrough-sustainable-development-goals-role-nationalhuman-rights.
Ignatieff, M. (2001) Human Rights as Politics and Idolatry (ed.)
A. Gutmann. Princeton University Press.
Taylor, C. (1999). “Conditions for an unforced consensus on
Human Rights,” IN The East Asian Challenge for Human
Rights, edited by Joanne Bauer and Daniel Bell, 124-144.
Cambridge: Cambridge University Press.

163

Nussbaum, M.C. (2011) Creating Capabilities: The Human
Development Approach, The Belknap Press of Harvard
University Press, Cambridge, MA.
Rawls, J. (1971). A Theory of Justice. Cambridge, MA: Harvard
University Press, 1971.
Dawson, A.J. (2015). Ebola: What it tells us about medical
ethics, J. Med. Ethics 41: 107-110.
World Health Organization: Ethical considerations for use of
unregistered interventions for Ebola Virus Disease (EVD):
summary of the panel discussion (12/08/14). Geneva:
WHO,
2014.
http://www.who.int/mediacentre/news/statements/2014/evola-ethical-review-summary/en/.

Book Review of: International
Biolaw and Shared EthicalPrinciples: Universal Declaration
on Bioethics and Human Rights,

Edited by Cinzia Caporale and Ilja Richard Pavone,
Routledge Taylor & Francis: Abingdon and New York,2018. 164pp. ISBN 978-1-315-58931-2 (ebk). ISBN 978-1472-48398-0 (hbk)
Reviewed by Alexander Waller, Ph.D., Thailand
Email: arwaller1@hotmail.com
This volume is a collection of ten essays that reflect
upon the significance of UNESCO’s role in further
widening human rights, the efficacy and strength of the
Universal Declaration on Bioethics and Human Rights(UDBHR) non-binding soft law that was adopted by 191
countries in October 2005. The UDBHR formed a third
pillar, along with the Universal Declaration on the
Human Genome and Human Rights of 1997 and theInternational Declaration on Human Genetic Data of
2003, to establish bioethics within internationallyagreed soft law. In an early chapter Roberto Andorno
reminds readers of the roots of UNESCO’s role inestablishing global human rights being from the horrific
events of the Second World War and the resulting
Nuremberg Code. The UDBHR went further thanprevious legislation as it broadened bioethics beyond
biomedical related ethics to include in Article 17
recognition of the environment and biodiversity as being
integral. The aim of the UDBHR was to provide aframework of principles and procedures as a guide forstates to formulate legislation and policies in the field ofbioethics. Collectively this text provides illustrations of
how far progress has been made towards this goal.
Part II of the book specifically deals with the UDBHR
contribution to globally shared bioethics. The UDBHR
has illuminated ethical concepts such as dignity,
informed consent and relevant environmental issues
such as overpopulation, poverty and pollution. Article 23of the UDBHR states the requirement for meaningful
bioethics educational programmes. The development of
the Core Curriculum Syllabus for the teaching of
Bioethics was published in 2008. Two authors in this text
applaud the content within this curriculum but do not go
as far as to include discussion of how this been included
within the statutory curricula of different states or164

Eubios Journal of Asian and International Bioethics 28 (September 2018)higher education establishments let alone any evaluationof case studies that illustrate the impact of this bioethics
curriculum on changing the attitudes, behaviour or
cognitive abilities of the students who have followed theprogramme.
Pavone recognises some issues such as the legal
status of human embryos or gene therapy that were notspecifically addressed within the UDBHR and the limited
new bioethical principles that were introduced at thatstage. However, the unanimous acceptance of thedeclaration without any objections was a significant
achievement and gives the UDBHR more weight thansimilar recommendations of international NGOs.
Furthermore, it may have a level of complianceequivalent to, or greater than, hard law treaties such as
the 1992 UN Framework Convention on Climate Change
or Paris Accord of 2015.
In one essay Thomas Faunce argues the role ofbioethics to assist in the transition from the“corporatocene” where multinational corporations could
challenge nation states’ legislation (as tobacco giants
have done in Australia for example) to the “sustainocene”
where global pathologies will be effectively addressedsuch as climate change, environmental degradation orsocietal imbalances in access to food, fuel and medicine
to name a few. Encouragingly he identifies artificial
photosynthesis as being an ethical and potentially viable
solution to many of these ills, and proceeds to justify thecase for the next UNESCO soft law to be a Universal
Declaration on Photosynthesis and Human Rights. Surelythat would bring a ray of sunshine to the global outlook!
A limitation of this volume is that few contributors
are from outside Europe; none are from Asia, SouthAmerica or Africa. Thus in some discussions an
unawareness of great work that has been accomplishedis revealed. For example Emilia D’Antuono and Emilia
Taglialatela make no reference to UNESCO Bangkok’s
Asian-Arab Philosophical Dialogue publications when
they attempt to seek a definition of dignity. Similarly,
there is a void in this collection that should have sharedand credited the work of UNESCO’s own Ethics andClimate Change in Asia and the Pacific (ECCAP) working
groups in the reports such Water Ethics and Water
Resource Management, Ethics and Biodiversity, Energy
Equity and Environmental Security, Energy Flow,
Environment and Ethical Implications for Meat
Production or Asia Pacific Perspectives on Bioethics
Education all of which explore real applications of the
UDBHR in depth. This void is apparent as International
Biolaw and Shared Ethical Principles has devoted moreemphasis on the biomedical principles and ethical issues
rather than those addressed in Articles of the UDBHR
that concern bioethics education, the environment andbiodiversity and future generations. Consideration of theapplauded ECCAP reports for example would haveprovided a more global insight into the legal, application
and adherence to this universal agreement.
Collectively this volume provides a good backgroundto the history of the development of the UDBHR from a
Eurocentric or Western perspective. The momentous

task of uniting nearly 200 nations into a formative
agreement on standards must not be underestimated.
Hopefully future researchers will adhere to theseprinciples and standards as the routine minimum andtherefore this is a useful text for many undergraduate
and graduate students. For all those working in the fieldof bioethics it will also be a welcome addition to theirlibrary as it welds together several themes.
For forthcoming conferences see: www.eubios.info
Email to Darryl@eubios.info.
Nineteenth Asian Bioethics Conference (ABC19): Bioethics for
Smart Living in Asia and Beyond: Taiwan as a hub for nurturing
international partnerships and sustainable practices, 13-16
November 2018, Kaohsung and Pingtung, Taiwan.
Twelfth Kumamoto University and AUSN International Bioethics
Roundtable (KBRT12): Bioethics in the 21st Century, 30 Nov; 1-2
December 2018, Kumamoto University, JapanEJAIB Editor: Darryl Macer
Associate Editor
Nader Ghotbi (Ritsumeikan Asia Pacific University(APU), Japan)

Editorial Board: Akira Akabayashi (Japan), Sahin Aksoy(Turkey), Martha Marcela Rodriguez-Alanis (Mexico),Angeles Tan Alora (Philippines), Atsushi Asai (Japan),
Alireza Bagheri (Iran), Gerhold Becker (Germany), Rhyddhi
Chakraborty (India/UK), Shamima Lasker (Bangladesh),
Minakshi Bhardwaj (UK), Christian Byk (IALES; France), Ken
Daniels (New Zealand), Ole Doering (Germany),
Amarbayasgalan Dorjderem (Mongolia), Hasan Erbay(Turkey), Soraj Hongladarom (Thailand), Dena Hsin
(Taiwan), Rihito Kimura (Japan), Abby Lippman (Canada),
Umar Jenie (Indonesia), Nobuko Yasuhara Macer (Japan),
Masahiro Morioka (Japan), Anwar Nasim (Pakistan), JingBao Nie (China, New Zealand), Pinit Ratanakul (Thailand),Qiu Ren Zong (China), Hyakudai Sakamoto (Japan), Sangyong Song (Republic of Korea), Takao Takahashi (Japan),
Noritoshi Tanida (Japan), Ananya Tritipthumrongchok(Thailand), Yanguang Wang (China), Daniel Wikler (USA),
Jeong Ro Yoon (Republic of Korea).

Eubios Journal of Asian and International Bioethics 28 (September 2018)165

ASIAN BIOETHICS ASSOCIATIONMEMBERSHIP 2018and 2018 subscription to Eubios Journal of
Asian and International Bioethics (EJAIB)____ I wish to pay my annual membership fees of Asian Bioethics Association (ABA), and receive the 2018
issues of Eubios Journal of Asian and International Bioethics (EJAIB) (The Official Journal).
____ Regular Price: US$80 Euro 60 ¥9000 (=Credit card price NZ$100)____ I wish to make a reduced contribution of____ I wish to register as a member of Asian Bioethics Association, but am not in the position to pay a fee. I
understand that I should be satisfied with Internet access to Eubios Journal of Asian and International
Bioethics (EJAIB) <http://eubios.info/EJAIB.htm>.
____ I wish to make a donation to Eubios Ethics Institute of ________ Exchange subscription with journal, newsletter, etc. (Name____________________ )____ I agree / ____ do not agree to my name being listed on the ABA www site
List Research Interests to be included:
Post or send an E-mail with your address* (or include current address label)
To: E-mail: asianbioethics@yahoo.co.nz
Please charge my VISA / MASTERCARD card (circle) for NZ$________
Account #Expiry Date

Signature

Name:*Mailing address:
E-mail:Web site: <http://eubios.info/ABA.htm>

Education for All People – We offer the best of every tradition! You can start any week, with atailor-made and flexible residential or combination hybrid mixture of in-person classes and workshops held all around theworld, and/or on-line group skype classes and/or video. Share perspectives of over a hundred students with a hundredfaculty from over 40 countries, and study in different countries. We celebrate learning from every culture and every discipline!
Students proceed at their own pace to suit their own life!

American University of Sovereign Nations(https://ausovereignnations.org)

166

Eubios Journal of Asian and International Bioethics 28 (September 2018)

Eubios Ethics Institute Publications (Books sent by SAL post, Journal by Airmail - Price included)
Eubios Journal of Asian and International Bioethics (Annual subscription)
NZ$100
Shaping Genes: Ethics, Law and Science of Using Genetic Technology in Medicine and Agriculture
by Darryl Macer, Oct. 1990, 421pp.
NZ$50
Equitable Patent Protection in the Developing World
by William Lesser, May 1991, 150pp.
NZ$40
Attitudes to Genetic Engineering: Japanese and International Comparisons (Bilingual)by Darryl Macer, May 1992 330pp.
NZ$40
Human Genome Research & Society
Eds: Norio Fujiki & Darryl R.J. Macer July 1992
ISBN 0-908897-03-0 (English), 230pp. ISBN 0-908897-04-9 (Japanese), 240pp.
NZ$40
Intractable Neurological Disorders, Human Genome Research and Society Eds: N. Fujiki & D. Macer
Feb. 1994 ISBN 0-908897-06-5 (English), 320pp. ISBN 0-908897-07-3 (Japanese), 340pp.
NZ$40
Bioethics for the People by the People by Darryl Macer,... May 1994 ISBN 0-908897-05-7, 460pp. NZ$50
Bioethics in High Schools in Australia, Japan and New Zealand, by D.Macer, Y.Asada,
M.Tsuzuki, S.Akiyama, & N.Y.Macer March 1996, ISBN 0-908897-08-1, 200pp.(A4)
NZ$50
Protection of the Human Genome and Scientific Responsibility (English and Japanese Bilingual)
Editors: Michio Okamoto, Norio Fujiki & D.R.J. Macer, April 1996, ISBN 0-908897-09-X, 210pp. NZ$40
Bioethics in India Eds: Jayapaul Azariah, Hilda Azariah & Darryl R.J. Macer
June 1998 ISBN 0-908897-10-3, (includes 115 papers) 403 pp. (Printed in India)
NZ$60
Bioethics is Love of Life: An alternative textbook by Darryl Macer, July 1998 ISBN 0-908897-13-8,
152pp. (Note 2nd edition published on iTunes Store as an iBook in 2015)
NZ$40
Bioethics in Asia Eds: Norio Fujiki & Darryl R.J. Macer, (includes 118 papers from Nov.1997
conferences, ABC’97 Kobe and Fukui Satellite) June 1998 ISBN 0-908897-12-X, 478 pp.
October 1999 ISBN 0-908897-14-6 (Japanese), 320pp.
NZ$50
Ethical Challenges as we approach the end of the Human Genome Project
Editor: Darryl Macer, April 2000 ISBN 0-908897-15-4, 124pp.
NZ$40
Bioethics Education in Japanese High Schools (in Japanese only)
Editor: Darryl MacerApril 2000 ISBN 0-908897-16-2, 112pp.
NZ$40
Bioethics and the Impact of Human Genome Research in the 21st Century
Eds: Norio Fujiki, Masakatsu Sudo, & D.R.J. Macer March 2001 (English and Japanese bilingual, 350pp).NZ$50
Bioethics in Asia in the 21st Century
Eds: Song Sang-yong, Koo Young-Mo & Darryl R.J. Macer
August 2003 ISBN 0-908897-19-7, 450pp.
NZ$50
Challenges for Bioethics from Asia Ed: Darryl R.J. Macer
November 2004 ISBN 0-908897-22-7 656 pp.
NZ$70
A Cross Cultural Introduction to Bioethics, Editor: Darryl Macer 2006, 300pp. (A4)
NZ$50
(Note 2nd edition published on iTunes Store as an iBook in 2015)
Bioethics in Iran, Editor: Alireza Bagheri, 2014. ISBN 978-0-908897-25-4 262 pp.
NZ$50
Bioscience Ethics Education Curriculum for Pre-Schoolers to Elementary Age Children,
Irina Pollard and Amara Zintgraff,. 2017 ISBN 978-0-908897-28-5, 60pp. (A4)
NZ$50
Getting Along: The Wild, Wacky World of Human Relationship, Laura R. Ramnarace 2017
ISBN 978-0-908897-29-2, 73pp. (A4)
NZ$50
Most Books can be downloaded for free online at www.eubios.info
Please charge my VISA / MASTERCARD card for NZ$
Account #Signature

Expiry Date
Name:

Date (D/M/Y)
Mailing address:
Email:
Research Interests (for Network)
Email this order page/details to asianbioethics@yahoo.co.nz