Eubios Journal of Asian andInternational Bioethics
EJAIB Vol 19 (4) July 2009ISSN 1173-2571

Copyright ©2009 Eubios Ethics Institute (All rights reserved, for commercial reproductions).
Eubios Ethics Institute World Wide Web: www.eubios.info/index.htm
Official Journal of the Asian Bioethics Association (ABA)

Contents

page

Editorial
97
Health Care in a Democracy98- Ann Boyd and Mariam Nejati
Punishing Paternalism: An Ethical Analysis ofJapan's Leprosy Control Policy
103- Michio Miyasaka
Caesarian Sections in Australia: Medical andEthical Issues
107- Arthur Saniotis
The Setting up of a National Bioethics Committee –Social and Cultural Considerations
110- Siti Nurani Mohd Nor
Are Human Rights and Health Care Universal?:Reflections on Health Care in India?
113- M. Selvanayagam and Francis P Xavier
Do the Developing Countries with High Disease
Burdens Need to Take a More Active Role in
Defining Health and Disease?
121- Chhanda Chakraborti and Rhyddhi Chakraborty
Darwinism and Humans
124- K. K. VermaOther information and conferences
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126
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Send papers to the editor in electronic form if
possible. Please use numbered reference style, do not
use automatic footnotes or endnotes. Papers are peer
reviewed.
The journal is independent of UNESCO and thecontents are not endorsed by either Eubios Ethics
Institute or UNESCO, but are published in the spirit ofacademic freedom.
Editorial address:
Prof. Darryl Macer, RUSHSAP, UNESCO Bangkok,
920 Sukhumvit Rd, Prakanong, Bangkok 10110, THAILAND
Fax: Int+66-2-664-3772 Email: d.macer@unesco.org

Editorial
This issue of EJAIB focuses on medical ethics withseveral papers examining the basis of health careaccess policies. Currently there are debates and bills
being discussed in USA and other countries regarding
the building of national health care systems. The Paper
by Boyd and Nejati examines the US situation, and thepaper by Selvanayagam and Xavier examines the
Indian situation. As two of the world‟s largest
democracies they are in need of better safety nets for
medical care.
Miyasaka examines the history of exclusion of
leprosy sufferers in Japan, and calls upon thegovernment and legal-medical system to address someunanswered questions. Saniotis examines the surge in
use of caesarian sections in Australia. He questions thejustifications for this, and also points out the rates are
significantly higher in patients with private medical
insurance. The definition of disease is examined in thepaper by Chakraborti and Chakraborty, while Vermaexamines evolution in humankind.
Siti Nor reports from a workshop held in Malaysia in
June 2009 that was organized by several government
departments in cooperation with UNESCO on theestablishment of a National Bioethics Committee there.
At the COMEST session the Malaysian Minister of
Science, technology and Innovation announced thatsuch a committee will be established by the end of theyear. In July at a UNESCO workshop in Bangladesh,the Bangladesh Bioethics Association was founded,and the Minister of Education also expressed his
support to establish a National Bioethics Committee
there,The next issue of EJAIB will focus on the Ethics ofEnergy Technologies in Asia and the Pacific (EETAP)
Project of UNESCO Bangkok, with a growing number of
papers open for consultation and peer review on thewebsite.
-Darryl Macer

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Eubios Journal of Asian and International Bioethics 19 (July 2009)

Health Care in a Democracy- Ann Boyd and Mariam Nejati
Biology Dept., Hood College, 401 Rosemont Ave,
Frederick, Maryland 21701-8575, U.S.A.
Email: boyd@hood.edu
Democracy is a form of government in which thepeople hold power through a free electoral process.
Hereditary and arbitrary class privileges are nothonoured as automatic access to office but require themajority of the electorate‟s endorsement. The
composers of the U.S. Constitution and Bill of Rights
shared a commitment to the principle of natural
freedom and equality. The Constitution adopted in 1788
provided for an elected government and protected civilrights and liberties. The United States Declaration of
Independence reflects the rights and liberties of men[sic] and was adopted by the Second Continental
Congress on July 4, 1776. The second section of the
Declaration of Independence states: “We hold thesetruths to be self-evident, that all men are created equal,
that they are endowed by their creator with certain
unalienable rights, that among these are life, liberty andthe pursuit of happiness.” To the extent that laws
promote and protect human beings free pursuit ofhappiness, they are good. When laws exclude
members of the community, such as women‟s right tovote, in opposition to the wording of the Declaration of
Independence, either the law is unjust or the purpose oflaw is inconsistent with the underlying principles.
Defending one‟s rights and liberties is accordingly
guaranteed (Dunn, 1994). Laws crafted by humanbeings for their benefit regulate community only so far
as they apply to all the people, a significant omission inpractical application between 1776 and today. One
must wonder why it was not more self-evident that all
human beings are in need of the same freedoms.
One civil war and two world wars later, the United
Nations considered the proposed Declaration of Human
Rights and approved the Declaration with a forty-eight nation affirmation and eight nations abstaining. The
Declaration set forth a common universal standard ofhuman rights for all people. Wording in Article 3 of the
Universal Declaration of Human Rights is very close to
the Declaration of Independence, "Everyone has theright to life, liberty and security of person. What rights
are extended to all persons is articulated in Article 25 of
the United Nations Declaration of Human Rights:“Everyone has the right to a standard of living adequate
for the health and wellbeing of himself and of his family,
including food, clothing, housing and medical care andnecessary social services, and the right to security inthe event of unemployment, sickness, disability,
widowhood, old age or other lack of livelihood in
circumstances beyond his control. Motherhood andchildhood are entitled to special care and assistance.
All children, whether born in or out of wedlock, shallenjoy the same social protection” (UNDHR, 1948).
Eleanor Roosevelt, wife of President Franklin D.
Roosevelt was an active proponent and sponsor of the
UNDHR. It may be historically significant that the U.N.
delegate, Eleanor Roosevelt, was supportive of auniversal application of human rights and moreover that

the U.S. did not ratify the Declaration until civil rights
section was separated from economic rights in 1966.
Verbal affirmation of human rights finds consistentopposition when economic factors emerge, as appears
in the conflict regarding universal health care and inparticular the State‟s Children Health Insurance
Program (SCHIP).
Students‟ written papers and oral discussion
frequently refer to rights in order to legitimate theirmoral claims. Few know the history of the UNDHR, but
most assume that things are now as they have always
been. It is interesting that the majority of students favor
human rights to the extent that allows individuals to dowhat seems right and best to him or her. Rather thanembrace human rights as an example of a universal
normative principle, most students apply “rights” inways that support liberty from interference so that anindividual can do what he/she desires. One student wasappalled that the United States Congress and President
failed to extend SCHIP. She wrote: “The United Statesis one of the wealthiest nations in the world. It is anation that conducts costly clinical trials in different
parts of the world, bears the burden of paying the
medical bills of individuals on respirators for decades,
and can wage wars that cost Americans over USD808
billion, yet it cannot (or will not) provide [all] its children
with medical care. The president vetoed SCHIP, statingthat it was a step toward federalizing healthcare, which
would ruin choice and competition of privatized
healthcare, as well as increasing government spending”(Nejati).
Being a federally funded-state managed program,
SCHIP provides medical insurance to children 18 years
and younger living within families with more income thatthe qualifying amount recognized by Medicaid andwithout enough income to pay for private medical
insurance. All employers do not provide healthinsurance and some employees opt-out. SCHIP
provided medical insurance through state sponsorshipto 6.6 million children in 2007. Legislation to continue
SCHIP met stiff opposition in the administrative branchof our democracy. The student asserted: “Failing toprovide children with health insurance is a failure by theAmerican government to provide social justice for its
children” (Nejati).
The challenge presented by the student‟s essay raises
questions appropriate for democratic public discourseon health care. Whose responsibility is it to oversee,monitor, and provide social justice? What is social
justice? Is social justice the correct ethical lens toevaluate health care in a democracy? How isconsensus achieved regarding medical care for any or
all citizens in a capitalistic competitive culture? Is theideal of social justice compatible with the competitivecommodity based health care system in the U.S.? How
is SCHIP related to health care reform in the US?
These comments-questions on the bottom of thestudent‟s essay prompted her to request an opportunity
to examine U.S. health care from a perspective ofsocial justice and human rights. This paper reflects ourongoing search for answers.
SCHIP and the status of US healthcare
Healthcare in the U.S. is a competitive and commodity
based system in which economic constraints risk someEubios Journal of Asian and International Bioethics 19 (July 2009)
persons having no access to health care except
through the hospital emergency room. Every citizen is amember of the nation (which we will hereafter call the“commons” to emphasize the importance of community
in contrast to individualistic moral values). It is vital tothe overall health of the commons that individuals
receive treatment when they are sick. Individuals will
not require the exact same amount of care so a flat
voucher worth x dollars per person per year isunrealistic. Recent practice has shown that failure to
insure all citizens leads to wasteful spending throughemergency room based care (the most expensive
option). An estimated 47 million citizens lack healthinsurance in the U.S., consequently, the uninsured
forego preventative care, and frequently allow
conditions to deteriorate until they resort to emergency
treatment (estimated to cost $30 billion each year).
Balancing the drain of uninsured treatment costs andescalating cost of care, premiums increased 87% from2000 through 2006 (Capretta, 2008). The average costof insurance for a family of four is $12,680/year. To
offset the cost, employers reduce wages, and to retain
coverage employers bid among insurance companies
for the best deal. The cumulative cost for U.S. healthcare is $2.1 trillion annually. Moreover, only 30% of thismoney is used to improve health, while the remainderfunds administrative, diagnostic and unnecessary
treatment (Anft, 2008).
Employer-based insurance covers 55% of U.S.
citizens. National systemic coverage for the poor (about
1 in 6) is available through Medicaid. The poverty level
for a family of four in 2008 was $21,200. All citizens 65
years of age or older qualify for Medicare with a graded
fee for coverage based on income. Federal employees,
including elected officials and military and civilian
employees are covered by federal insurance programs.
Those who are classified as uninsured comprise about
15% of U.S. citizens. When Nejati presented some ofher preliminary research findings to a class ofundergraduates, the majority of students were opposed
to any form of universal health care on the basis that it
would compromise quality of care and limit individual
choice.
An outside observer might question why the Medicaid,
Medicare, and Federal insurance programs are notuniversal health care systems, even if they do notcurrently enroll all citizens. The short answer is thatsuch programs have limited scope. If they were merged
and expanded it would create a universal healthcare
system. The resistance to moving in that direction isbased on the potential lack of choice currently available
through private competitive based insurance. A 2007
poll revealed that 41% of those surveyed were opposed
to any government controlled health plan, while 47%
favored such a plan (Jacobs, 2008). If during theinterview the respondent was told that universal
coverage could mean a reduction in some form oftreatment, 64% of those who initially supported
universal coverage became opponents. The perceptionof a superior standard of care in the US in comparison
with government sponsored programs is frequently
made as illustrated in the following published article.
“Outcomes for diseases such as cancer and99

hypertension depend much more on access to quality
health care than infant mortality and life expectancy, so
are a better measure of quality. Five-year survival of all
types of cancer is higher in the United States than inEurope…in Europe, the incidence of hypertension is 60
percent higher and the slope of hypertension related toadvancing age is steeper compared with the UnitedStates; this might be explained by the higher UnitedStates spending on prescription drugs” (Sade, 2008 p
486).
Recognizing the troubled healthcare system and therising costs of care, universal coverage or somealternative reform is high on the political agenda. The
2008 election of President Obama signaled amovement in support of several healthcare related
issues. Within the first weeks in office, he signed the$32.8 million SCHIP bill providing coverage to 11
million children. In signing the bill, President Obamasaid, “this is a down-payment on my commitment tohealth care for all citizens” (AARP Global Network, Feb.
5, 2009).
Proponents of reforms argue on the basis of better
economic efficiency: “There will come a time when theinequities, inefficiencies, and costs of the current
methods of financing health care will be so intolerable
that the public will not only accept but demandcomprehensive reform. At that time, the politicalfeasibility of the voucher system will be compelling. It is
more congruent with American values than are thealternatives of employer or individual mandates with
explicit subsidies or a single-payer plan. By providing
publicly funded basic care for all, with free choice of aplan and freedom to buy additional services, thevoucher system reconciles the distinctively American
tension between equality and individual freedom more
directly and efficiently than do any of the alternatives”(Emmanuel, 1258, 2005). This proposal may be auseful bridge from our unjust and inadequate system
toward universal coverage. A national organization ofphysicians argue that single-payer plan would be more
efficient and affordable but the administrative branch
has shown little interest in the proposal, claiming it is
too disruptive a step given other economic concerns.
Opponents assert that health care reform will mean
loss of freedom, choice, and an implicit lower standardof care. The more inflammatory pendants warn of a
Leviathan model in a non-benevolent state: “TheLeviathan model of the state explains many features ofpublic health insurance: its uncontrolled growth, its
tendency toward monopoly, it capacity to buy trust andloyalty from the common people, its surveillance ability,
its controlling nature, and even the persistence of its
inefficiencies and waiting lines” (Lemieux, 2008, p 416).
It is clear that extrapolating to extreme poles in a
debate about health care is more effective at increasing
the volume in the debate than inspiriting deliberative
dialogue. Alarms, warnings, and labels, such as“socialized medicine” are effective polemics andretardants to democratic debate. In class, students willuse inflammatory language such as “socialized
medicine” to oppose universal health care. The media
fuel the flames by reporting on how inferior “socialized
medicine” is in contrast to the U.S. standard, such as

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Eubios Journal of Asian and International Bioethics 19 (July 2009)

long waiting periods for medical intervention, rejectionof treatment on the basis of age, etc. The news media
report frightening stories of long waiting periods forelective surgeries and denial of intervention in universal
health care countries. Such warnings are notjuxtaposed with similar triage of our organ transplantsystem. Regretfully affluent consumers are easily
manipulated to pay attention to rights in a defensive
posture rather than to consider the needs of thecommunity and the rights of the less privileged. What issurprisingly strange is that the opposition to universal
health care fails to admit that health is as necessary toindividual flourishing as is education or fire and police
support.
Health care reform is not a new political topic in the
US. President Nixon made a bold proposal for broader
health insurance courage through an employer
mandate that was defeated in Congress. In thesubsequent administrations, President Carter andPresident Clinton proposed plans which were also
defeated in Congress. The issue in each attemptedreform has been disagreement over how a universal
plan, employer mandated, or voucher based system
would be financed (Morgan and Lee, 2005). Thisparticular issue again highlights the separation of civilrights from economic rights.
Medical bankruptcy is rare in industrialized nations
with universal health care whereas 40% of bankruptcies
in the US are due to medical debt (Gottleib, 2000). It isdifficult to explain how wasteful the current system is.
Emergency based care by law cannot deny treatment toa person without insurance. A 2005 report calculated
that $43 billion was spent on care for uninsured and$29 billion of that was shifted into higher premiums forprivate health insurance, raising the price of premiums.
Competitive marketing among private insurancecompanies increases the cost of private coverage over
Medicare by 31% ($420 billion a year) (Menzel andLight, 2006).
The underinsured and uninsured population of the US
is between 46 and 48 million, about 16% of the
population. The Institute of Medicine reports,“Uninsured children and adults suffer worse health anddie sooner than those with insurance” (2004). In
addition to not covering nearly one in every six citizens,
health care per capita is a higher percentage of grossdomestic product than any other developed country(Anderson, 2005). Health care expenditures rise at an
average of 10% per year. A single-payer system ofnational health insurance has been proposed to be themost cost-effective way of achieving the goals of care
(DeGrazia, 2008). Proponents of single-payer system of
insurance argue that cost of care is reduced byeliminating overhead in the competitive for profit systemcurrently in place. A single-payer system would havestandard fees for services, annual negotiations between
hospitals, physicians, and drug prices and the one
payer insures that the whole population realizes thesavings and benefits of efficient delivery and long-term
health promotion. Using a universal information
technology system would allow efficient retrieval ofpatient‟s records. The Medicare system in place for
persons over 65 years of age has lower administrativeand overall costs per patient than any other systemtried thus far (DeGrazia, 2008).

Opponents claim that a single-payer system issocialistic, but if the system is publicly funded it is not
any more socialistic than universal education.
Objections to single-payer plan like universal coveragein general include, fear of loss of individual choice
about physicians and treatment options, rationing ofcare, and longer waits for services, diminished quality,and general limitations on individual freedom. Ironically,
the lack of care and its accompanying costs have
similar affects. If costs are not contained, other risks
emerge e.g. compromising other items in the federal
budget. Further opposition comes from the libertarian
position of negative rights: in a system of free market
exchange of goods, each individual is free to pursue
and purchase what suits his/her goals. The Lockean
conception of rights is negative: the right of anindividual to not have interference by government orother agents in his pursuit of happiness.
Sade claims that the right to liberty is a metanormative principle: without guidance to right or good
choices are particular, individual, to choose between
alternatives within those available without constraint.
Sade further asserts that welfare rights obstruct the
freedom of individuals to choose and the power ofgovernment should be limited to protective functions.
Health care reforms in the past have only complicatedthe system by entitlement programs and therefore thereform necessary to liberate health care from themistaken community interest back to individual interest
is to return to an entirely free market system in which
every person purchases his/her health care andrestructures Medicare and Medicaid to allow clients tobuy insurance like everyone else or to rely on the
charitable voluntary gift of benevolent members of thecommunity (Sade 2008).
The argument will doubtless find favor with many freemarket proponents, but it does not provide the kind ofcommunity ethos necessary to protect the innocent andvulnerable. Children are not consumers or competitive
bidders in the economic health care system. Children
are the wards of parents, whose choices or lackthereof, impose limitations on many aspects of humanflourishing. For a society to deny to its most vulnerable
members the right (even entitlement) to adequate
health care places money over humanity. Even
prisoners get health care while incarcerated. Negative
rights will not spawn community solidarity. Standing
with those who suffer evokes compassion. Health caredoes not seem to be any less basic than adequate
clothing, shelter, and food, in a just society. While avision of justice has yet to gain consensus in the U.S.
positing the ideal reminds us to work to a more perfectunion where every member has a fair and equal chanceat the human potential free societies promise.
Healthcare is considered a primary human right intreaties passed by the United Nations and ascribed assuch in many countries; sadly the US is not among
them. Few rational people would disagree that
adequate health is a prerequisite for living a good life.
Basic health like education, food, clothing, and shelter
are preludes to the pursuit of other forms of happiness.
Any distribution scheme seeking to assure equal
access to the basics of life, including education andhealthcare, require funding priorities. Budgets reflect
the values of a person and a nation. Failure to provide a

Eubios Journal of Asian and International Bioethics 19 (July 2009)
community based system of health care equivalent to
the education system is a failure to protect the basic
rights of citizens. Competitive, for-profit care systems
are appealing to self-interest so long as one has the
position within a society to enjoy the benefits of healthinsurance. Community based systems of care require a
broader sense of who deserves what in the social
order; it requires that healthcare be equated with otherbasic survival needs of human persons such as
education. Universal health care like universal
education does not dictate that every person pursue
every possible benefit, rather provides the basic
elements necessary to contribute to the society in which
one resides.
Human Rights, civic and economic
The Declaration of Human Rights crafted in 1948
embraces an ideal of human commonality. Humanrights speak across national and cultural boundaries,
and are interpreted and protected within the context of
economic and political cultural diversity. Contemporary
debates about universalism and relativism, individualand communitarian norms press ethics boundaries insearch for common ground. Without some philosophicalcommon conception of the good for human beings, we
invite an infinite plurality of culturally conditioned norms
to thrive. The problem with extreme relativism is thefailure to find common ground on which to build an
ethical discourse. At the opposite extreme of absolutist
universalism, the dictation of one norm over otherconsiderations likewise rejects open dialogue. The
appeal of human rights as a universal claim to the
dignity of individuals regardless of economic, social,educational, and geographical circumstances carves
out a commons for humanity. Accepting human rights
as universal does not exclude relative interpretations of
how and where specific rights are granted to individuals
and herein lies our trouble.
Fundamental human rights claim the goal ofsustaining life, by ensuring economic, social, politicaland personal freedoms. Respect for freedom of
conscience respects plurality of values, social customs,
cultural norms, and individual free moral agency.
Government is that aspect of a social construction that
holds the power and responsibility to establish laws that
insure mutual respect of human dignity. Inherent in theestablishment of political systems is the tension
between the good of the individual and the good of thecommunity. Respecting the dignity of each person, thepolis must protect freedom and create conditions that
promote each person developing his/her full potential(Hollenbach, 1979).
The multifaceted nature of human beings requires thatrights are intrinsically interrelated, the rights to life,
bodily integrity, food, clothing, shelter and to somedegree, health care. Rights that defend the dignity ofthe person, including the right to work, economic rightsthat insure a fair wage, the right to expression,assembly and social interaction, contribute to conditions
that support the truly human person within diverse
social and cultural circumstances (Hollenbach, 1979).
Where does access to health care fit in this functional
scheme?

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Justice
Justice according to Plato is a social system of
distributing a fair share of resources according to need.
Treating persons equally according to need recognizes
human dignity. Sitting in a sidewalk café watchingpeople pass by should show the observer the diversity
among persons. Equal treatment does not require an
equal share of attributes. Being a member of the same
species should awaken us to the natural common
ground among us. The ideal of justice, as inclusive,
mutual, interdependent embraced in the human rights
movement rests on the cardinal axiom that all humanbeings are born free and equal, in dignity and rights,
and are endowed with reason and conscience (Kunz,
J.L. 1949; Annas, G.J. 1998). Broad and encompassing
claims to freedoms and rights gloss over specific rights
to things related to human flourishing.
Human beings live in communities, families, societies,
large and small. Our nature is both reasoning andrelational. If we view rights in a freedom frominterference (negative rights) manner, we risk losing
sight of the larger group which provides the context for
choice. It is possible to do harm by neglect.
Human beings do not flourish in isolation but in
community. It is the communal, relational nature thatsuggests that there is within the nature of the person an
intuitive and natural claim to human rights. “All persons
share a common human nature and can discover byreason an order in nature, and resolve by reason andthe human will to act in order to pursue the purpose ofbeing human” (Maritain, 1943). Protecting theconditions that strengthen the nature of the person
allows each member to achieve his/her potential. To theextent that human rights are intrinsically interrelated:
the right to life, bodily integrity, food, clothing, shelter,
and to some degree health care pertain to the holistic
wellness of the human being. The right to work for a fairwage, the right to expression, assembly and social
interaction contribute to conditions that promote social
interactions and community solidarity (Hollenbach,1979).
Rights language promotes human dignity. Only asociety of clones could be conceived as having
absolutely equal abilities, talents, and desires. Rather
than expect that every member of the commons
contribute and extract the same amount in health care,the view of a true democracy ought to focus on the
wellbeing of the entire populace. Karen Lebacqz
observes, “Relative justice involves the calculation ofcompeting interests, the specification of rights andduties, and the balancing of life forces” (Lebacqz,
1986). An egalitarian system of justice fails to recognize
the different endowments of health and wealth. A
person should not be restricted to a “life-time” allotmentof medical treatment just as no person ought to beforced to take the allotted amount. Limited resources
force choices, and the values of equity and freedom
provide principles with which to approach a justallocation (Lovin, 1995). Limitations also create an
opportunity inviting us to look more closely at what wevalue and why spurring ethical dialogue.

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Eubios Journal of Asian and International Bioethics 19 (July 2009)Children ought to have a special place in the dignity
principle recognizing our duty to protect and care for thevulnerable. Breaking the stranglehold of injusticerequires a deeper understanding of who suffers fromlack of equal access to prompt and preventive healthcare in the current system. Hearing the cry of the
oppressed is a challenge to the privileged. It requires
recognizing that we are more likely to have privilege asa lottery of birth than a consequence of our merits. The
reciprocal is also true: those who suffer chronic ill
health are not sick by choice or lack of merit but bychance. Particular diseases may have genetic or
environmental causation but what child controls his or
her genes or living environment?
Responding to the needs of the poor in a preferential
manner gives dignity to those who suffer anddemonstrates compassion by the caregiver. A moral
agent has a duty to create strategies that liberate andempower full participation in the society. Justice begins
by taking injustice seriously and making a commitment
to mutual responsibility in which the entire humancommunity experiences a restoration of thefundamental relational nature of persons (Lebacqz,
1987). Justice is as important as autonomy except for
those concerned about the particular choices andbenefits to themselves. Those at the margins of asociety may know from experience how unequal ethicalprinciples are applied in modern policy matters.
The ideal of the common good is difficult for liberals
and communitarians alike. The pluralism ofcontemporary society makes a single vision of the goodsociety difficult, but jettisoning the project altogether ismore threatening. The common good may be apluralistic ensemble, but to support and promote thedignity of every human person requires recognition of
the relational nature of human beings. Theinterrelationships and interdependence of persons insociety cannot be justified by an individualistic
understanding of human rights. Dignity of a humanperson is an ontological claim. What persons of limited
abilities contribute to community is the opportunity for
us to learn to care for our neighbor. We may learncompassion best in the laboratory of human suffering.
Duty of Democratic Government
The duty of government is to craft fair policies thatallow individual freedom of choice within a system ofchoices, not assure all potential choices are viable. The
failure to see the negative consequences of neglectedcare for millions of citizens on the public health of all
citizens limits the ability of individuals to embrace a
community based system of care (Iltis and Cherry,2008). The example of SCHIP highlights the inequalityof the competitive private based insurance system. The
current system is unjust because children are
vulnerable and lack the autonomy necessary to acquire
health care insurance independent of their guardian(s).
Shifting to universal coverage could and should
eliminate some forms of injustice in the current system.
A step in that direction is to fund SCHIP so that all
children are given access to insurance while the nation
decides what to do with a commodity based competitive
health care system.
Autonomy or dignity in Kantian terms requires thatvulnerable individuals be protected by other rationaland free persons. Because children cannot makeimportant decisions on their own, society has a duty toprovide services that protect their quality of life. Healthinsurance and access to care for children are no lessimportant than legislative intervention to prevent childneglect and abuse. Failing to provide general access tohealth care, except in cases of emergency, children are
at risk of developing more serious conditions withhigher treatment costs. Saving a few dollars today bydelaying or denying preventative care is a debt laid on
future generations of citizens.
The ideals of social justice prohibit discriminatory
allocation and access, rather require that inequalities becorrected (Daniels, 2002). If the majority opinion is self
serving the universal health care ideal is far from thecurrent practice in this democracy. A positive benefit of
the current economic distress could be a sharedexperience some formerly privileged citizens may sharewill those neglected for too long. When by choice orforce we are in need, our vision is clearer about why
access to healthcare should or could be understood asa human right. To reform health care for all citizens thecompetitive commodity driven for profit system will haveto change (Taylor, 2008). Democratic systems change
by majority consensus or dramatic need. Future
generations will pay a premium price if justice delayed
is justice denied.
In the 2008 election, health care was one of manysocial reforms that voters named as a factor in theirselection of a candidate. Few constituents could claim
more moral legitimacy than children. In cases ofneglect, social services have the authority to transfer achild into foster care. It is ironic that education is not
only universally available but that legal enforcement ofattendance is practiced with penalties for truancy. Foodis made available in schools for children who need it.
How voters can deny health care while supporting
education as a universal standard for the open future
for every child is a mystery. Health care is one strand
in the social web of factors that affect the lives anddevelopment of children. Citizens of a democracy, evena representative one (republic) should understand thatthe community has a duty to transmit the “inalienable
rights” for all citizens from generation to generation.
References
AARP News, “Widened Coverage for Kids Now Law”,
Feb.
5,
2009,
@
http://bulletin.aarp.org/states/hi/articles/widened_coverage_for_kids_now_law.html, accessed March 16,
2009.
Anderson, G, (2005) Health Spending in the UnitedStates and the Rest of the Industrialized World, Health
Affairs 24: 903-914.
Anft, Michael, (Nov. 2008) “Search for an Rx” Johns
Hopkins Magazine, 60: 48-55.
Annas, G.J. (1998) Human Rights and Health – The
Universal Declaration of Human Rights at 50, New
England Journal of Medicine 339: 1778-1781.
Capretta, James (2008), Health Care 2008: A Political
Primer, The New Atlantis 20:17-31
Daniels, Norman. Justice, (2002) Health and HealthCare, The American Journal of Bioethics, 2: 2-16.

Eubios Journal of Asian and International Bioethics 19 (July 2009)
DeGrazia, David. (2008) Single Payer Meets Managed
Competition: The Case for Public Funding and Private
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May 2009.

103

Punishing Paternalism: An
Ethical Analysis of Japan's
Leprosy Control Policy
Michio Miyasaka, Ph.D.
School of Health Sciences, Niigata University
Asahimachi-dori 2-746, Niigata City 951-8518, Japan
Email: miyasaka@clg.niigata-u.ac.jp
Abstract
Leprosy (Hansen's disease) has been associated witha deep stigma that dates back to ancient history.
Japan‟s leprosy control policy exemplifies the ethicalquestions this disease evokes in the context of humanrights in modern medicine. This paper explores thehistory of Japanese leprosy control policy which started
during its rapid modernization in the late 19th century
and continued until 1996. I argue that the responsibilityof the medical profession for development of the overall
control policy which resulted a mass human rights
violation. Japanese leprosy control policy can beinterpreted as four powers given to the medical
profession: 1) forced isolation, 2) sterilization, 3) forcedlabor, and 4) arbitrary punishment. Japaneseleprologists considered forced isolation necessary,even after sulfone drugs became widely available andthe international medical community suggested thatforced isolation should be abolished. Male patients who
wished to marry had to undergo vasectomy, andpregnant female patients were forced to have abortions.
Patients with milder symptoms were assigned heavylabor, which may have exacerbated their condition.
Leprosarium directors were empowered to arrest andpunish disobedient patients without court order.
Records show that 22 of 92 persons imprisoned in
Jukambo, a special leprosarium facility for the most
severe punishments, died in confinement. In thelandmark Kumamoto judgment in 2001, the court ruledthat forced isolation was not justifiable after it became
medically unnecessary, since at least the 1960s.
However, the other three troubling aspects of thecontrol program were left unquestioned, even thoughthose would be much more difficult to justify.
Furthermore, the lawsuit was filed against the country,
and no individual responsible for the establishment andcontinuation of the policy was prosecuted.
1. Introduction
Leprosy, or Hansen's disease, has been associatedwith a deep stigma that dates back to ancient history. In
many parts of the world, patients were ostracized bytheir communities and families based on religious or
popular beliefs that often described leprosy as a resultof sins or wrongdoings. It was described as a divine
punishment for immorality in the Old Testament, andhundreds of leprosy patients were considered to be
killed because of rumors that some of them poisoned
1)wells and fountains in medieval Europe. In Japan,
there was a Buddhism-rooted belief that explained
leprosy as an outcome of wrongdoings in the patient's
previous lives. Japanese folklore tells of leprosy

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Eubios Journal of Asian and International Bioethics 19 (July 2009)2)

patients cast away in valleys or on mountains.
However, the leprosy control policy in modernizedJapan exemplifies a situation that has evoked serious
ethical questions in the scientific period of modern
medicine and public health. In the second section ofthis paper, I will explore the history of Japanese leprosy
control policy from a paternalism point of view in whichfour powers were given to the medical profession. The
third section briefly sketches how the control policy
ended.
2. Leprosy Control Policy In Japan
Japan's leprosy control policy started during its rapid
modernization in the late 19th century when the country
opened its ports and started introducing Western sociolegal systems and medicine. Leprosy patients of the
day gathered and formed colonies around shrines,
temples, and hot springs. Some Westerners observed
them leading miserable lives on the streets as outcasts
3)
or beggars,
and some missionaries establishedprivate leprosaria. In 1889, the French Catholic
missionary Germain Léger Testevuide opened the firstprivate leprosarium, Koyama Fukusei Hospital in
Shizuoka Prefecture. The establishment of private
leprosaria by several other foreign missionaries
followed. Their activities were welcomed by patients,
but stimulated a rivalry from Japanese leaders who
wished to make Japan "a first-class nation" with a4)
modernized public health system.
From an ethical point of view, Japanese leprosy
control policy can be interpreted as four powers given
to the medical profession which resulted a mass humanrights violation: 1) forced isolation, 2) sterilization, 3)
forced labor, and 4) arbitrary punishment.
1) Forced isolation
The first International Leprosy Conference was held in
Berlin in 1897, in which two Japanese physiciansparticipated. The conference acknowledged leprosy as
a contagion caused by Mycobacterium leprae, as
described by a Norwegian physician, Armauer Hansen,
in 1873. There were differing views among theattendees regarding the containment of leprosy by
5)
isolation, but the conference eventually concluded thatpatient isolation was necessary as part of the disease
control strategy. This conclusion inspired Japanese
6)
leaders and physicians to support patient isolation In
1900, the Japanese Ministry of Home Affairs conducteda national survey and reported 30,359 leprosy
4)
patients. In 1907, the Leprosy Prevention Law (LPL)
was enacted, under which physicians were required toreport all leprosy patients they found, and political
officers were empowered to order these patients
admitted to leprosaria. In 1909, five public leprosaria
opened in Aomori, Tokyo, Osaka, Kagawa, andKumamoto. Additional leprosaria were added later tototal 13 national leprosaria that covered most of thecountry.
During the 20th century, international and Japanese
health care professionals gradually diverged in theirviews of forced isolation of leprosy patients. The
International Leprosy Association (ILA) increasingly
emphasized voluntary and limited isolation. After
sulfone drugs were found effective in the 1940s andtheir use increased in the 1950s and 1960s, the ILA

and otherinternational medical organizations
recommended that enforced isolation be avoided as
6)much as possible. In Japan, on the other hand,
leprologists continued to believe that patient isolation
was effective and necessary. Furthermore, they
repeatedly requested expansion of the capacity ofleprosaria and more intensive isolation. There was only
minor argument among Japanese leprologists thatforced isolation may not be necessary. In 1931,
leprologist Noboru Ogasawara of Kyoto University
insisted that the disease was not incurable, not7)
heritable, and not highly contagious, but his claim was
ignored and attacked by other leprologists. In 1935, thegovernment adopted a program to eradicate leprosy
within 20 years, and local governments launched anationwide campaign in 1938 named Muraiken Undo
(literally, "campaign to clean up leprosy in every
prefecture") through which they encouraged local
residents to identify leprosy patients in theirneighborhood and inform officials in order to send themto leprosaria.
After WWII, Japanese society was drastically
democratized under US occupation; however, the policy
of forced isolation of leprosy patients survived. The newConstitution proclaimed fundamental human rights for
all nationals, including freedom of political activity. In
1951, the National Leprosaria Patients' Association wasestablished. Although this association demanded theabolition of forced isolation, leprologists weresuccessful in maintaining it. In the same year, three
leprosarium directors, Kensuke Mitsuda, Yoshinobu
Hayashi, and Matsuki Miyazaki, recommended that theDiet maintain and reinforce the isolation policy. The LPL
was revised in 1953 in accordance with the leprologists'
opinions: it upheld compulsory isolation, prohibition ofleave without permission, and punishment of
disobedient patients. As the law defined no discharge
codes, patients had to be isolated for life. Meanwhile,the nationwide campaign Muraiken Undo had resulted
in almost complete isolation of patients. The number of
those hospitalized in leprosaria reached 11,057 in
1955, which was estimated to be 91% of all leprosy
8)
patients in the country. Therefore, in the 1950s,
almost all leprosy patients in Japan had been isolated
in leprosaria and were destined to live out their lives
there, even after they were treated with sulfone drugs
and proven not to have bacilli.
2) Sterilization
The notion that leprosy patients should be prevented
from having children had been accepted, not only by
Japanese leprologists, but also by foreign missionaries
involved in the care of leprosy patients. However, they
adopted very different approaches. Hanna Riddell, an
English missionary who opened a private leprosarium,
Kaishun Hospital in Kumamoto, insisted on sex
segregation, the idea of hospitalizing female and malepatients separately. However, Kensuke Mitsuda, aleading leprologist, argued against her approach,pointing out that sex segregation was unrealistic. He
wrote, "It will be natural for desperate persons to live
only for the pleasure of the moment. But the only
pleasures they can obtain in leprosaria are gambling or
adultery. ... Here, a moral anarchy has emerged that
resulted in more than a dozen babies that should notEubios Journal of Asian and International Bioethics 19 (July 2009)9)

have been born."
Mitsuda concluded that sex
segregation was impracticable in national leprosaria,
and that sterilization of patients was more realistic andwould contribute to patient welfare by permitting themto marry. Furthermore, he believed that sterilization
would contribute to a peaceful atmosphere in
leprosaria, because physicians could allow patients tomarry without letting them have children.
In 1915, Mitsuda began to vasectomize male patients
who wished to cohabit with female patients. In the bookhe published in 1950, Mitsuda wrote that the first10)
vasectomy was performed on a voluntary patient, butmany patients later claimed that sterilization was
conducted against their wishes and that it severely
impaired their dignity. Furthermore, pregnant female
patients were often forced to have abortions. Former
patient Shige Tamashiro regretfully described an
enforced abortion, or rather, the infanticide. She clearly
remembers the infant waving its hands and legs on asurgical plate, before a nurse covered the nose and themouth of the infant with a piece of gauze to terminate
its breathing, saying to Tamashiro, "It is a cute girl, and11)
looks very much like you."
During Japanese colonization of the Korean
peninsula, officials of Shorokuto Kousei-en, aJapanese-run leprosarium on Sorokdo Island near thesouthwestern tip of the peninsula, performed patient
sterilization as a punishment. A former Korean patient
testified in a lawsuit against the Japanese government
in 2004 that he was vasectomized when he refused toworship at a Japanese Shinto shrine in the leprosarium.
He was placed in the confinement room, and forced toundergo sterilization without being given any
explanation. Vasectomies and abortions had been
conducted on leprosy patients without legal basis, butboth were legalized by the Eugenic Law (Yusei Hogo
Hou) enacted in 1948.
3) Forced labor
Former patients have claimed that living conditions in
national leprosaria were far from appropriate. They
were assigned many types of labour, because doctors
in leprosaria "encouraged patients towards mutual
12)aid." Patients with milder conditions were assigned tonurse invalid patients, bury dead patients, wash
bandages and gauze for reuse, collect night soil, andrepair buildings and roads. For example, During WWII,
patients of Kuryu Rakusen-en, a national leprosarium in
Gumma located on a hillside at an altitude of 1200
meters, were ordered to walk down to markets about 10
kilometers (6.3 miles) away to buy charcoal andfirewood in order to save gasoline. They had to walk on
mountain trails back to the leprosarium carrying heavy
13)
loads of charcoal and firewood. It is presumed thatheavy labour exacerbated their condition, because thedisease renders victims insensitive to wounds and pain.
Former patient Yuji Kodama of Kuryu Rakusen-en
related that when he and other patients were gathering
firewood in a steep valley, he noticed that bunches offirewood passed from one patient to another were
stained with blood.

1054) Arbitrary punishment
Leprologist Mitsuda wrote that some patients inleprosaria committed assault and battery, theft,adultery, and incited riots, but "there was no way to
14)control disorderliness." He also pointed out that if aleprosy patient who was not institutionalized committeda crime and was arrested, he or she would be sent to aleprosarium instead of a prison because prisons would
not accept leprosy patients. In 1916, the government
accepted their request for police power by revising the
LPL so that leprosarium directors were empowered toarrest and punish disobedient patients. Accordingly,
confinement facilities were built in all national
leprosaria. The director could imprison patients for up to
one month and reduce their meals to twice a day
without a court order. However, leprologists of the day
regarded confinement as nothing but a mild "housearrest" which "seldom had any effect on the brutal ones15)
who could repeat their crimes." Directors of national
leprosaria decided to build a special facility in which
they could give more severe punishments. The special
facility was constructed in Kuryu Rakusen-en in 1938
and officially named Tokubetsu Byoshitsu ("special
sickroom"), but was called Jukambo ("maximum
confinement facility") by patients. In fact, it was a placeof deadly confinement composed of eight cells. A postWWII investigation of Jukambo unveiled one of thedarkest aspects of Japanese leprosy control policy.
Records showed that 22 of 92 persons imprisoned diedduring their imprisonment or within a few months after
their release. The dates of their deaths in Jukambo
were concentrated between November and March,when the air temperature of the region dropped to 16°C (-3.2°F) or below. Jukambo cells had no heating
apparatus, and the building was on a low foundation,
probably to prevent patients from escaping through thefloor. Furthermore, patients were usually imprisoned
much longer than the ordained period. The average
length of confinement was more than 130 days. The
longest imprisonment was over 500 days.
In 1947, media coverage made Jukambo a scandal
and officials of the Ministry of Health and Welfare(MHW) commented at the Diet that they would abolishit. However, the power given to leprosarium directors toarrest and punish patients remained in effect, and a"leper's prison" was established in Kikuchi Keifu-en, anational leprosarium in Kumamoto, in 1953.
3. End of The Policy
The Japanese leprosy control policy remained
unchanged for a long time. It survived the 1950s whenpost-WWII reform democratized Japanese socio-legal
systems, the 1960s when sulfone drugs became widely
available and studies showed that leprosy was rarely
16)
contagious,and the 1970s and 1980s when
Japanese scholars introduced bioethics and its
concepts (i.e., patients' rights and informed consent).
Its crucial last moments came as late as the 1990s,
when all residents in leprosaria had become "former
patients" who were bacteriologically negative and had
spent most of their lives there.

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Eubios Journal of Asian and International Bioethics 19 (July 2009)

1) Patients’ rights movement
It should be noted that patients' activities to abolishthe control policy started early. Since the 1920s,
patients' associations were organized in each
leprosarium to improve living conditions. Their activities
were suppressed during wartime, and they wereterrorized by arbitrary punishment, especiallyconfinement in Jukambo. However, the suppressedenergy burst out once the Constitution of Japanguaranteed fundamental human rights, including
freedom of assembly and speech, and the Jukambo
was abolished. As mentioned above, the National
Leprosaria Patients' Association was established in
1951, and demanded abolition of the above-mentioned
questionable powers. Some patients went on hunger
strikes at their leprosaria, and a few hundred went on a
sit-down strike in front of the MHW and Diet Building.
However, their movement came up against public
ignorance. There had seldom been media coverage
about the patients' movement, and Japanese media
generally approved of the isolation policies until aroundthe 1980s.
2) Abolishment of LPL
Admittedly, at least in the 1980s, patients' unions andmedical professionals began to cooperate to change
the situation. Fujio Otani, a medical official of MHW, isregarded as a key player in the partnership between
medical professionals and former patients who were
now old and afraid of being discharged from leprosaria
by force. Furthermore, due to sterilization, they had nochildren who could support them when they went backinto society. The powers given to medical professionals
over patients were now applied mildly. Former patientswere almost free to leave their leprosaria and werereleased from heavy labor (which had gradually been
17)
assigned to the leprosarium staff).
Otani expressed
his opinion that the LPL should be repealed andreplaced by a new law to guarantee their livelihood andwelfare at the 1994 meeting of the Japanese Leprosy
Association and at the 1995 Government-organized
LPL Review Committee. In accordance with theCommittee‟s report, the Diet passed the Act to Abolishthe Leprosy Prevention Law in 1996.
3) Lawsuit against the country
On May 11, 2001, the Kumamoto District Court
declared that the isolation policy had violated thefundamental human rights guaranteed in theConstitution of Japan. The court associated theisolation policy with an "absolute isolation" and"extinction" of leprosy patients. It held the MHW
responsible for failing to seek an early reversal of the
LPL, and the Diet responsible for inaction in repealingit, ordering compensation and an apology from the18)
government.
The point at issue in the Kumamoto
judgment was the forced isolation of leprosy patients,
which the court ruled to be unjustifiable after it became
medically unnecessary, since at least the 1960s.
However, the other three questionable aspects of theleprosy control policy that I have considered here wereleft unexamined, even though those would be evenmore difficult to justify. Furthermore, the lawsuit was
filed against the country, and no individual responsible

for the establishment and continuation of the policy wasprosecuted.
Conclusion
The history of Japanese leprosy control policy
described here suggests that the responsibility of
medical professionals for development of the overall
control policy was significant. Most aspects of thecontrol policy were proposed by leading leprologists,
and the policy can be considered as their strong
paternalism being realized as extreme powers toaccomplish 1) forced isolation, 2) sterilization, 3) forcedlabor, and 4) arbitrary punishment. On the other hand,
the history also shows that there was a patients‟ rights
movement in its own right - a half century before
academic bioethics introduced Western concept of
patients' rights to the country. However, the movementfound the society less supportive in pre-bioethics Japanin which overwhelming power was given to thephysician. The patient's only choices were to obey or tooffer a hopeless resistance at the risk of punishment.
Acknowledgment
This manuscript was supported by a grant-in-aid for
Scientific Research (project number: 15652001) fromthe Japan Society for the Promotion of Science.
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1)
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Gumma. Goza no yukuchi-hi kanko kyoryoku iinkai,
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Ashmead, A.S. Suppression and Prevention of
Leprosy, Norristown, PA: Herald Printing andBinding Rooms, 1897, 80-85.
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Shuppan, 2001. (in Japanese)5)
Pandya, S.S. The First International Leprosy
Conference, Berlin, 1897: The Politics ofSegregation.
História,Ciências,
Saúde–
Manguinhos. 2003;10 (supplement 1):161-177.
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Balina, L.M. and Valdez, R.P. Reflections on theInternational Leprosy Congress and Other Events in
Research, Epidemiology, and Elimination of
Leprosy.
International
Journalof
Leprosy
1994;62:412-27.
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Ogasawara, N. (1931) Rai ni kansuru mittsu no
meishin. Shindan to chiryo 1931;18. (in Japanese)8)
Tofu Kyokai. Mitsuda Kensuke and leprosy
prevention in Japan. Tokyo. Tofu Kyokai, 1958. (inJapanese)
9)
Mitsuda, K. Kaishun byoshitsu. Tokyo, Asahi
Shimbun, 1950, 204-205. (in Japanese)
10)
Ibid., 54.
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Chugoku Shimbun. Yatto taiyo gatetta. Anonymous
article on May 12, 2001. (in Japanese)
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Mitsuda, op. cit., 210-211.
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Kuryu Rakusen-en Kanja Jichikai (ed). Fusetsu nomon (Fifty-year History of Patients of Kuryu
Rakusen-en). Gumma. Kuryu Rakusen-en Kanja
Jichikai, 1982, 205-214.

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Mitsuda, op. cit., 204.
Mitsuda, op. cit., 204-205.
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Sato, H. and Narita, M. Politics of Leprosy
SegregationinJapan:The
Emergence,
Transformation and Abolition of the Patient
Segregation Policy. Social Science & Medicine.
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Narita, M. "Rai yobo-ho" 44nen no michinori.
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Watts, J. Japan's government compensates leprosy
patients for isolation policy. Lancet 2001;357:1599.
15)

Caesarian Sections inAustralia: Medical andEthical Issues- Arthur Saniotis
Discipline of Anthropology, School of Social Sciences,
University of Adelaide, South Australia 5005
[Also affiliated with Discipline of Public Health, Schoolof Population Health and Clinical Practice]
Email: saniotis@yahoo.co.uk
Abstract
Caesarian Sections in Australia have risen
exponentially in the last fifteen years. Reasons for therise of caesarian sections are both broad and complex
and highlight the increasing medicalization andintervention of the western bio-medical model. This
article gives an overview of caesarian sections inAustralia and discusses some of the main medical andethical issues regarding this practice.
Keywords:
Caesariansection,intervention,
medicalisation, ethics
Introduction
Until recently, caesarian section (CS) has been
complementary to vaginal birth deliveries among
Australian women. However, during the last 10-15
years there has been an exponential rise in CS among
Australian women. Consequently, the steep rise in CS
has brought up various medical, social and ethicalissues which have not been adequately addressed.
This paper gives an overview of CS in Australia andpurports some of the medical and ethical issues which
are located in this practice.
Prevalence in CS among Australian Women
CS has increased in Australia as a preferred form ofgiving birth, from a base of 19.4% in 1994 to 28.5% in
12003. Australia‟s rates of CS are high when comparedwith other countries. For example, CS rates in the2
United Kingdom during 2003-2004 were 22.7%, 22.7%
1

Australian Institute of Health and Welfare. (2007)“Australia‟s Mothers and Babies 2003.” AIHW (online)
6
October
2007,athttp://www.ranzcog.edu.au/womenshealth/index.shtml
2
Department of Health (2005) NHS Maternity Statistics,
England: 2003–04 Bulletin 2005/10. Department of Health, 3
March 2006, at http://www.dh.gov.uk/Home/fs/en

107
3

4

in New Zealand, and 9.2% in the Netherlands. In
relation to CS “in 2003, 57.9% were without labour
5
while 41.9% were with labour.”In addition, CS
deliveries from Aboriginal and Torres Strait mothers
were less frequent at 23.3% compared to 28.8% for
5
non-indigenous mothers. From 1983-2003 emergency
6
CS have increased in Australia by 70%.
In Western Australia there were more than 430,000
6
CS deliveries for the period between 1984-2003.
Statistics reveal that planned or elective CS have risenamong females in Western Australia from 6% to 13%
over a twenty year period, while there has been a 70%
6
increase in emergency CS for the same period. In
New South Wales 20% of 131,101 women had a CS for7
the period 1998-2002. Research has also found that
Australian women with private medical cover are threetimes as likely to have elective CS than women who are6
not insured.
This trend is further illustrated withwomen having CS at 37. 4% in Australian private
hospitals while women in Australian public hospitals
5
having CS at 25.7%.
Medical Risks of Caesarian Section
The popularity of CS among Australian women should
not downplay its inherent risks. A 2005 study of
136,000 “second pregnancies” in New South Wales that
had CS performed during their first delivery were foundto be at greater risk of uterine rupture, hysterectomy
and infection.
Moreover, babies that were born
8
prematurely needed intensive care.
In addition,
women who had CS in their first delivery had increasing
complications if the second birth was also delivered by
7
CS. Despite medical improvement, CS delivery has
increasing health complications for the mother and6child.
According to Fenwick et al, CS “poses greater9physical and emotional risk to both mother and baby.”
10 11 12 13 14
A study conducted in the United States

3

New Zealand Health Information Service (2004) Report onMaternity: Maternal and Newborn Information, 12 November
2005,athttp://www.nzhis.govt.nz/publications/maternityreport.html
4
G. Bernard. “Summary of Vital Statistics 1995,” Pediatrics
98, no. 6 (1996): 115–120.
5“Caesarian Sections and Births on the Rise in Australia.”
News-Medical.Net 15 December 2005. 17 October 2007, at
http://www.news-medical.net/?id=15000
6“Dramatic Rise in Caesarian Section in Australia,”
ScienceDaily.com 21 May 2007. 17 October 2007, at
http://www.sciencedaily.com/release/2007/05/070516091842.
htm
7
Effects of Caesarian Sections on Future Pregnancies. 17
October,at
http://www.pregnancyinfo.net/csections_future.html
8
J. Robotham. “Tough New Rules for Caesarian: Growth
Spurt Caesarians in NSW.” Sydney Morning Herald. 7 April
2007.
9
J. Fenwick., J. Gamble., & Y. Hauk. “Reframing Birth: AConsequence of Caesarian Section,” Journal of Advanced
Nursing 56, issue 2 (2006):121-130.
10E. L. Ryding., K. Wijma., &B. WijmaB. “Predisposing
Psychological Factors for Posttraumatic Stress Reactions
After Emergency Caesarean Section,” Acta Obstetrica et
Gynecolgica Scandinavica 77 (1998): 351–352.

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Eubios Journal of Asian and International Bioethics 19 (July 2009)

cites that newborns delivered by CS are three times
more likely to die than newborns delivered by vaginal
15
birth. Death rates in the US for CS babies was 1.77%
for every thousand births compared with 0.62% for
15
every thousand births from vaginal delivery.
Medical and Ethical Issues
Research also indicates that there are long term
“disturbances to children‟s emotional, behavioural andcognitive development when their mother has suffereda postpartum mood disorder, which tends to occur more
9 16 17 18 19
after CS.”
There are several reasons for theincrease in CS. Firstly, CS offers women a sense ofcontrol and planning which is not given by vaginal
9
delivery. This notion is greater management of CS
accommodates within the western model of control overunknown circumstances.
“Fewer unknowns” areinterpreted by many women with increasing safety of
9
CS. Women‟s onus on baby safety is reflected inresearch in which half of mothers who chose CS did soon the belief that it was safer for their baby than vaginal
20
birth.
Increasing CS has also been linked to the invasive
element of the western bio-medical model in dictating
what is considered best for women. This issue involves
loss of women‟s autonomy over their bodies. Dr Farrell(AustralianCouncilfor
Obstetricians
andGynaecologists) stated on ABC radio that “it isimportant that women are given accurate information
20
and that they have the right to choose.” Professor
Sabaratnam Arulkumaran (President of the UK Royal
College of Obstetricians and Gynaecologists) statedthat women should be educated “rather that just20
agreeing to do a caesarian.”In New South Wales
new rules are coming into force which will outline to
women the benefits and risks of CS compared to11

E. K. Slaytor., E. A. Sullivan., & J. F. King. “Maternal
Deaths in Australia 1997–1999.” Maternal Deaths Series No.
1. Australian Institute Health and Welfare Cat. No. PER-24,(2004) Canberra, Australia.
12
C. A. Armstrong., S. Harding., T. Matthews., & J. E.
Dickinson. “Is Placenta Accreta Catching Up With Us?”
Australian and New Zealand Journal of Obstetrics andGynaecology 44:210–213.
13
H. Goer. “The Case Against Elective Caesarean Section,”
Journal of Perinatal and Neonatal Nursing 15, no. 3 (2001):
23–38.
14
N. Jukelevics. “Women in the Crossfire: Forced Repeat
Cesareans,” Birth 29 (2002):149–150.
15
D. Gibson. “State Eyes Crackdown on Elective Caesarian.”
The Western Australian. 17 October 2007, at http://www.
thewest.com.au/default.aspx?MenuID=25575
16
T. Field. “Infants of Depressed Mothers,” Developmental
Psychopathology 4 (1992): 49–66.
17
L. Murray. The Impact of Postnatal Depression on Infant
Development,” Journal of Child Psychology and Psychiatry
33, no. 3, (1992): 543–561.
18
A. Sinclair & L. Murray. “Effects of Postnatal Depression on
Children's Adjustment to School,” British Journal of Psychiatry
172 (1998): 58–63.
19
V. Koo., J. Lynch., & S. Cooper. “Risk of Postnatal
Depression After Emergency Delivery,” Journal of Obstetricand Gynaecology Research 29, no. 4 (2003): 246–250.
20
L. Hall. “Fear a Factor in Surgical Births.” The Sun-Herald 6
October
2007.
17
October,at
http://www.smh.com.au/news/national/fear-a-factor-insurgical-births/2007/a0/06/1191091421081.html

8vaginal birth. The new policy change also stipulates
that health practitioners need to advise women about
the “implications for subsequent pregnancies” due toemerging evidence of the health risks of CS. The onus
on educating women on CS is based on evidence that
20% to 50% of women having had CS were notsatisfied by the amount of information provided to them21
nor by their decision to have CS. Turnball et al ask
whether women who have had CS in the first birth will
opt for vaginal delivery in subsequent births if given
22
appropriate information?
Western Australian Health Minister, Jim McGinty wentso far as to treat CS with circumcisions in that both
15
should be performed if medically required.
McGintyclaims that giving birth at present has too much medical
intervention. McGinty‟s comments may hold sometruth. Although uterine rupture is uncommon it is more
likely to occur during subsequent vaginal delivery rather
than repeat CS. For this reason women need more
21 23 24 25
information.
A survey practice sent toAustralian and New Zealand obstetricians andgynecologists attempted to determine current rates for
women with a prior CS. 96% of respondents agreed
that vaginal birth after CS (VBAC) should be presented
as an option to women, while 44% disagreed that26
VBAC was the safest option.
In addition, mostobstetricians indicated that VBAC was safest for
women, while they were less certain if it was safest for
26
babies.
Turnball‟s study reveals that 25% of women
21 22“insisted on” and were “keen to have” CS.
Similarly, according to Mould et al, 10% of women in a
London hospital felt that they had autonomy in theirdecision to have CS while 50% of women indicated that
21 27
they would have CS in a further pregnancy.
Another reason for the dramatic increase in VBAC is9
the result of a targeted campaign. For example, Goer
et al in a letter to the editor of Birth explains that theprestigious New England Journal of Medicine (NEJM)
has “served as a platform for anti-VBAC, and indeed,anti-vaginal birth movement within the obstetrics
21

C. M. de Costa. “Caesarian Section: A Matter Choice,” The
Medical Journal of Australia 170 (1999):572-573.
http://www.mja.com.au/public/issues/jun21/decosta/decosta.html
22
D. Turnball., C. S. Wilkinson., & A. Yaser. “Women‟s Roleand Satisfaction in the Decision to Have a Caesarian Secton,”
The Medical Journal of Australia 170 (1999): 580-583.
23
B. P. Sachs., C. Kobelin., M. A. Castro., &F. Frigoletto.
“The Risk of Lowering Caesarean-Delivery,” New England
Journal Medicine 340 (1999): 54–57.
24
M. McMahon., E. Luther., W. Bowes., & A. Olshan.
“Comparison of a Trial of Labor With an Elective Second
Caesarian Section,” New England Journal Medicine 335(1996): 689-695.
25
R. H. Paul. “Towards Fewer Caesarian Sections – The Roleof a Trial of Labour (editorial),” New England Journal
Medicine 335 (1996):735-736.
26
J. Dodd,. & C. A. Crowther. “Vaginal Birth after Caesarian
Section: A Survey of Practice in Australia and New Zealand,”
Journal of Obstetrics and Gynaenocology 43, no. 3(2003):226-236.
27
T. A. J. Mould., S. Chong., J. A. D. Spencer., & S. Gallivan.
“Women‟s Involvement with the Decision Preceding Their
Caesarian section and their Degree of Satisfaction,” British
Journal of Obstetrics and Gyanecology 103 (1996): 10741077.

Eubios Journal of Asian and International Bioethics 19 (July 2009)
profession by publishing several demonstrably biased
28
articles and editorials in recent years.”Moreover,
Goer contends that 1998 Guidelines on VBAC by theAmerican College of Obstetricians and Gynaecologists(ACOG) limited VBAC and supported repeat “CS as
9protection from malpractice suits. The fact that CS has
become an acceptable alternative of childbirth should
be considered in relation to women‟s objections inhaving vaginal births. For some women “fear of pain,
sphincter damage, possible stress incontinence and“compromised sexual dysfunction” were other reasons
21
for opting for CS.
The role of medical practitioners was a significant
indicator affecting women‟s decision making in having
CS. Fenwick et al state that vaginal birth was in somecases not a possibility while other women were told that
9
VBAC had not been discussed with them. Anothergroup of women noted that VBAC was not an option.
As one woman said, “I knew my doctor would not let me
have a normal because he believes in all CS. So I just9never expected to have one.”
Moreover, somemedicalpractitioners have sometimes tended to
discuss birthing issues in such a way that pressures9
women in complying with their recommendations. Thisis expressed by one women whose doctor said, “Do
you want a live baby or a dead mother, or a dead baby
or a live mother, or do you want a dead baby and a9dead mother.” Such language is tenuous as it acts tocompromise women‟s autonomy in deciding which typeof delivery is most suitable for her. Apart from its
unethical stance, such language is particularly
distressing to pregnant women whose condition makes
them especially vulnerable and dependent on others.
Conclusion
This article has provided an overview of some of the
medical and ethical issues surrounding CS.
Insummary, Australian women have opted for CS due totheir belief that it is safer for the baby than vaginal birth;and secondly, CS is deemed as being a more
9
convenient and manageable way of giving birth. The
rise of CS in Australia highlights the power of the
medical intervention, as well as, the possibility of
medical practitioners
to“undermine
women‟s9
confidence to give birth vaginally.” For theorists suchas Cahill, CS has been conducted within the ambit of apatriarchal medical model and is enforced by “legal and29
medical intervention.”
While this paper has notdiscussed CS in relation to gender issues, Cahill‟sstudy on maternity in the United Kingdom prompts us to
ask to what extent do doctor-patient interactions
sanction or violate women‟s autonomy in birthing?
Cahill argues that obstetricians have regularly useddefinitions such as “normal and abnormal” in order “to29strengthen their power base.”
On this point Cahill
avers:The successful medicalization of reproduction and its
prevention accounts for the majority of consultations

109

between women and doctors (Clarke 1981) whilst thedevelopment of a specific medical specialty for dealing
with women‟s reproductive functions (i.e. gynaecology)
and its association with obstetrics serves to further
reinforce the pathological nature of pregnancy andillustrates the controlling influence of medicine over29
women‟s lives.
CS clearly represents the increasing medicalisation of
women‟s reproductive functions while raising concerns
about misinformed decisions by women.
Cahillrightfully
asserts
thatthemedicalisedandinterventionist „birth culture‟ invariably undermines
psychosocial aspects which women undergo in the
29 30
transition for woman to mother.
On this theme,
Oakley suggests that CS, epidural anaesthesia andforceps are “closely associated with postnatal mood
29 31
disturbance.
Thus, mood disturbances may be due
to iatrogenic causes. If this is the case, a moratorium
on CS is needed.
I would suggest that CS in Australia reflects changes
in Australian society, and its transition to becoming ahigh-tech culture. Australian medical culture advocateshigh-tech medical facilities and techniques with
provisioning the needs of the population. Technological
medical innovations are generally viewed as being
progressive and increasing medicine‟s mastery over thehuman body. In this way, medical technology attempts
to fulfill social expectations while society encourages
technological medical innovation. What is often ignored
is the psychosocial well being of people and the factthat our humanity is rooted in biology, not technology.
The dominance of the western bio-medical modelneeds addressing in order to place CS where it
belongs, as an ancillary to vaginal birth, not as aprincipal form of giving birth.

EJAIB welcomes articles,
news and commentaries for
publication. Please send to
the Editor.

28

H. Goer. “VBAC and the New England Journal of
Medicine,” Birth 29 (2002):150–151.
29
H. A. Cahill. “Male Appropriation and Medicalization ofChildbirth: An historical Analysis,” Journal of Advanced
Nursing 33, no. 3 (2001):334-342.

30

R. E. Davis-Floyd. “The Technological Model of Birth,”
Journal of American Folklore 100 (1987): 479-495.
31
A. Oakley. Women Confined: Towards a Sociology ofChildbirth. (Oxford: Martin Robertson, 1980).

110

Eubios Journal of Asian and International Bioethics 19 (July 2009)The Setting up of a National
Bioethics Committee –Social and Cultural
Considerations- Siti Nurani Mohd Nor, Ph.D.
Associate Professor, Department of Science &Technology Studies, Faculty of Science, University of
Malaya, 50603 Kuala Lumpur
Malaysia
Email: sitinuraninor@um.edu.my
Abstract
The rationale for the establishment of a National
Bioethics Committee is discussed. Social and culturaldimensions of bioethics that led to the flourishing of
bioethics as a system of thoughts and ideas in theWestern world and the influence it has made in parts ofthe Eastern world is explored. It is held that bioethics
is valuable as an educational tool to enhance criticaland decision-making skills. The need for a National
Bioethics Committee in Malaysia is practical for the
purpose of assisting the government in drawing up ofsound public policies pertaining to health care andscientific research practices and, to advance bioethics
as an integrated study of life, science, and society.
Introduction
On 19 June 2009, a Workshop for the Establishment
of A National Bioethics Committee, was organized by
two Ministries in Malaysia, with the cooperation of
UNESCO.
At the end of the workshop, it was
concluded that it was necessary to initially form a
Steering Committee or a Task Force to study thefeasibility of establishing a National Bioethics
Committee before one can concretely be founded. The
need for such a committee has already been expressed
five years earlier (July-August 2005), when a concept
paper for the setting up of National Consultative Council
for Bioethics was prepared.
To begin the discussion on the relevance of instituting
such a committee, a talk on the “Social and Cultural
Dimensions of Bioethics” was presented.
The
UNESCO Declaration on Bioethics and Human Rights(2005) preamble was recalled;
Conscious of the unique capacity of human beings toreflect upon their own existence and on theirenvironment; to perceive injustice; to avoid danger; toassume responsibility; to seek cooperation and to
exhibit the moral sense that gives expression to ethicalprinciples.
This statement presented a challenge for the
Malaysian community to be directly involved byresponding in a conscientious manner to various
advancements in the biosciences such as stem cellresearch, genetic testing and human cloning, which
gives new power to control the development process of
all living things. In addition, the Universal Declarationon the Human Genome and Human Rights (1997),
article 21 has relayed that. "States should takeappropriate measures to encourage other forms ofresearch, training and information dissemination
conducive to raising the awareness of society and all of
its members of their responsibilities regarding thefundamental issues relating to the defense of humandignity which may be raised by research in biology, in
genetics and in medicine, and its applications. They
should also undertake to facilitate on this subject anopen international discussion, ensuring the free
expression of various socio-cultural, religious andphilosophical opinions.”
It must be noted that bioethics is not alien to the
Malaysian people, whether from the academic circle or
the lay public. Issues affecting social, cultural andethical implications of the then „new‟ revolutions inhuman reproductive technology had already caught theattention of the popular media as noted by Nor (1999).
Local newspapers in 1992 expressed public concern
over moral implications of “the development of „spermbanks' and behind the controversial project, claims thatthe sperm-banks were necessary „to help husbands ofchildless women to produce and store active sperms‟[and that] an elite group donors were chosen among
those who „had the brains and could produce goodprogeny'.”
The furor eventually died down due toapparent Islamic sensitivities of the subject. Chan
(1998) later deliberated the ethical aspects of healthcare reform in the country and observed cautiously how
Western bioethics has given primacy to the individual
against the interests of the community. He noted,“What has happened to our Asian values and ethics,
which put the priority of our collective welfare abovethat of individualist concerns.”
Social and cultural impacts of science and technology
have led to development of bioethics as a novel
discipline in the history of knowledge that significantly
influenced societies on a great scale. It became an
ideology that gained practical importance especially inmatters dealing with decision-making that involves thephysician and his/her patient. The word "bioethics" wasfirst coined in English by Van Rensellaer Potter in 1970
to address a new discipline dealing with contemporary
ethical issues in medical care such as abortion,
euthanasia and the doctor-patient relationship. Before
the mid-1960s medical ethics had been discussed in
the context of the Hippocratic tradition, the „duty of thedoctor towards his patient‟. Today, chants such as
patient competency, patient rights and the best interestof the patient have dominated bioethics literature in
unfettered ways.
Institutional developments related to bioethics beganwith the birth of a bioethics centre in June 1969 which
later became known as the Hastings Center in New
York. Soon afterwards in 1971, the Centre of Bioethics
was founded by Joseph and Rose Kennedy Institute at
the Georgetown University in Washington DC.
It isnoted that the US Society for Health and Human Values
was founded as an expression of public concerns overthe impact of technological and industrial practice of
medicine on the lay society. (McCullough, 1978)
Literature that developed from this discipline ofknowledge emerged in the publication of the first
Encyclopedia of Bioethics in 1978. In 1983, Thomas L.
Beauchamp and James F. Childress produced atextbook Principles of Biomedical Ethics that introduced
a vision of normative ethics with a strong emphasis on

Eubios Journal of Asian and International Bioethics 19 (July 2009)
prima facie principles. According to the book, actual
bioethical problems may be resolve by the systematic
application of four principles to each case, namely,
autonomy, beneficence, non-maleficence and justice. It
is worth noting that critics have argued, for example,
that these principles ignore psychological factors
including a person's (or patient‟s) character, life story,
cultural background, and gender.
Under the aegis of bioethics, the practice andprocedures including research management in therealm of medicine have been „standardized‟
internationally. For example, the use of informed
consent forms is virtually a taken for granted procedure.
It is the norm, so to speak and anything or any practicethat goes against it is dubbed a wrongdoing or
unethical. During Hippocratic times, the preferredconception was that physicians should protect theirpatients from information of their disease and theirtreatment options on the bases that doctors know what
is best for their patients. In modern times, informed
consent gives patients the upper-hand in a medicaltransaction or contract and the term „informed choice‟has been coined as an eclectic addition to put bothparties at par with each other so as to reduce the„subordinate‟ character of the „weak‟ and ill patient.
Western bioethics is known to have also on a largesociological scale influenced Eastern culture. The
transfer of new medical technologies seemed to beaccompanied by the importation of new values (Macer,2003).
For example, before 1990,
Japanesephysicians routinely protected dying patients by not
informing them of their terminal diagnosis. This isbecause decisions about dying are considered acommunal affair and not the sole province of individual
patients.
In fact, organ donation from deceased
persons is not an easy affair for transplant specialists inJapan (Ohunki-Tierney, 1994).
It is remarkable that it was also at the Fifth World
Congress of Bioethics in London (2000) that I had thegreat opportunity to witness a public apology delivered
on behalf of all the wrongdoings committed during theJapanese Biological Warfare of World War II (Tsuchiya,
2000 and Nie, 2001). Such is the power of bioethics,
an enterprise of thoughts, that seemed successful indigging out every moral event worth mulling overopenly.
The influence of bioethics has also swept across theworld as manifested in the development of new
curricula of almost all schools of medicine in theWestern world and some in non-Western parts of the
globe, including parts of Thailand, Taiwan and Croatia(Boyd & Doering, 2001, Gosic & Segota, 2001, Tai,
2000).
I am therefore inclined to say that bioethics is thedevelopment of a disciplined culture of ideas that not
only reflects upon concerns regarding current practices
in science and medical research and practice but that it
has gained popularity as a tool for organizing logicaland rational thinking that has pervaded all over theworld to displace conventional, emotional andsubjective behaviour. The „brain death‟ definition, forexample, has given doctors the additional „license‟ toact fast to inform next-of-kin of deceased persons of the111

option to donate organs. It has become a routine andacceptable procedure in most hospitals and the period
to mourn has been overtly cut short.
It is safe to say that in Malaysia, the first instance of
bioethics encounter occurred as early as 1987 when
the first „test-tube‟ baby was born. This is attributed toa renowned Malaysian gynecologist, Hamid Arshat who
reflected warily that “until March 1989, no formal codeof ethics has been drawn to safeguard the legal,religious, and social norms regarding this humanreproductive technology”(Arshat, 1989). It is elsewhere
also emphasized that guidelines on the use of assisted
reproduction should be explicitly made in accordancewith the distinctive cultural and religious values of the
Malaysian people (Malaysian Laws and Policies on
Human Reproduction, 1988). There was, therefore,awareness that the peculiarities of the technology
called upon careful and deep deliberation, ethically,socially and culturally. Similar concerns had earlier
been raised by practitioners that the practice of ART
may create ethical, legal and religious problems in the
country, where jurisdiction in matters of the personal
status of Muslims is governed by the religious Shariah
and civil authorities (McCoy, 1989).
It is interesting though that others saw the coming of
IVF to the country as „timely technical solution‟ to„marital problems‟ directly affected by childlessness –the staging of a Public Forum on Infertility and the
Pathway to Parenthood in 1993 seemed to portray this(Nor, 1999).
Over in the Western world, the new reproductive
technology made impact of a different nature; therecognition of third parties, the surrogate, into family
institutions. An unrelated woman may be paid forgestational services, sisters and even grandmothers
could bear babies for their siblings and daughters,
respectively. While some discussed that anonymity begiven to donors (of gametes), others contemplated ifthey should be recorded on birth certificates of suchchildren.
Some in the audience at the workshop questioned theneed for the formation of an over-arching National level
Bioethics committee. Accordingly, there were alreadyin place various Institutional Ethics Review Committees
in medical schools, medical research centres anduniversities throughout the country besides theavailability of various internal guidelines that
supposedly offer rules of conduct for the
implementation of various scientific research activities
such as the “Guidelines on the Release of GMOs” or
the “Guidelines on the Disposing of Chemical Waste.”
The role of existing accreditation bodies that audit
institutions to monitor and/or combat non-conforming
practices was also pointed out. In addition, there arealso acts to govern medical malpractice such as thePrivate Healthcare Facilities and Services Act 1998
which has been effective in deterring unethicalbehaviour.
Some members of the audience
anticipated that the task of the NBC would overlap thenumerous mechanisms already in place for maintaining
professional integrity among scientists and researchersand some believed that the task ahead for the NBC
would be immensely larger than it envisaged.

112

Eubios Journal of Asian and International Bioethics 19 (July 2009)

So what then would essentially be the job scope andspecifications of a National Bioethics Committee? A
National Bioethics Committee would, of course,
primarily provide consultation service that assists withidentifying and resolving ethical, cultural or social
issues in the planning and conduct of research in therealm of bioscience and medical innovation. The
responsibilities and the scope of duties that the NBC
would be tasked with would include:
1.
Advising scientists and program organizers on
ethical, social and cultural (ESC) matters inbiotechnological research and medical innovation.
2.
Educating researchers on ethical concerns andon their proper resolution.
3.
Providing consultation to researchers anduniversity-based ethical review committees to resolve
differences over ethical concerns.
4.
Developing outreach programs that foster
better understanding of the ESC challenges in research
to the scientific community and the public.
5.
Promoting public forums, surveys and othermechanisms to help identify public concerns overbiotechnological research agendas and to provide
information on the goals and conduct of such researchand,6.
Assuming the role as mediator between
scientists and the public so as to maintain scientificintegrity and foster public trust.
To begin effectively, the first task would be to compile
a directory of researchers or experts with interest inbioethics to establish lines of communication. This
would aid the Committee in maintaining a pool ofexperts hence providing qualified persons to serve as
ethicists, for example, on bio-safety monitoring boards.
It is most important for the NBC to work closely with
policy makers of relevant Ministries with the ultimate
aim of assisting the nation in developing common
ethical standards in an organized manner. The NBC is
expected to disseminate information to the widest
possible audience within the nation by regularly
developing materials (publication) that provide essential
coverage of ethical, social and cultural concerns of thebiosciences. Last, but not least, and consistent with thegoals of the 1974 UNESCO Recommendations of the
Status of Scientific Researchers which specificallystates the importance of the “development ofeducational techniques for awakening and stimulating
ethical personal qualities and habits of mind”, the NBC
should advance training programs and assist thedevelopment of university courses on bioethics so as tocreate a bioethics competent group of citizens of the
future.
It is expected that there will be two major functions of
the NBC and this would include; first, the drawing up ofsound public policies pertaining to health care andresearch practices giving unwavering consideration todemonstrate respect for every ethnic group orcommunity's value system and worldview because
these may profoundly affect their livelihood, and;second, to advance bioethics as an integrated study oflife, science, and society. The latter is expressed in the1997 Universal Declaration on the Human Genome andHuman Rights;
States should take appropriate measures to promote
the principles set out in the Declaration, througheducation and relevant means, inter alia through theconduct of research and training in interdisciplinary
fields and through the promotion of education inbioethics, at all levels, in particular for those responsible
for science policies.
Bioethics is appreciated as a tool for the developmentof critical thinking capacity. This aspect must never bedismissed as has openly been done by opponents who
are against assimilating bioethics within normal schoolor university curriculum.
Bioethical deliberations
consider the medical, scientific, societal, and politicalfactors that represent troubling dilemmas for bothindividuals and societies. In the same week that theWorkshop was organized, a paper by Nor (2009) titled“Institutionalizing Ethics – How may COMEST help
Malaysia” was presented at a UNESCO-ISTIC satellite
conference held in correspondence with the Sixth
Ordinary Session of the World Commission on the
Ethics of Scientific Knowledge and Technology(COMEST,) Kuala Lumpur 15-19 June 2009. It wasdisclosed that the course Professional Ethics andMorals which incorporates issues on bioethics
including, human cloning, GM foods and the humangenome project, has indeed been taught to students ofBiology, Chemistry, Physics, Geology and Mathematics
since 2001. It is held that the valuable outcome of thecourse that was conducted using the problem-basedlearning method is that it encouraged the students to bebold decision-makers. Students had the opportunity toengage in discussions of risk, benefits, strengths anddrawbacks of technologies which they never have been
given the time to consider in the usual undergraduate
curriculum. Through such discussions, students areable to hone their analytical and critical thinking skills.
Conclusion
The Steering Committee must understand that no one
in the academic (or professional) world would accept
any compulsory compliance with rigid rules. The not too
distant task for the Steering Committee to execute is to
first understand that there are two ways to view andapply bioethics- Descriptive andPrescriptive.
Descriptive bioethics is the way people view life, theirmoral interactions and responsibilities with livingorganisms in their life. Prescriptive bioethics is to tellothers what is ethically good or bad, or what principles
are most important in making such decisions including
who has rights and who has duties (Macer, 1998).
I believe the Steering Committee should steer clear
from the dogmatic adoption of prescriptive bioethics as
has been done by undiscerning members of thescientific and medical fraternity and first embark upon aseries of local research on descriptive bioethics so as toassess, define and map the cultural loci of the plural
mixture of the Malaysian community. Bioethics covers
several aspects of human life as reflected by theencroachment of new technologies that gives (andbegs) new meanings to “when life begins”, “when it
ends”, “what constitutes the family unit”, and the current

Eubios Journal of Asian and International Bioethics 19 (July 2009)
fashionable question, “how can we live right andsustainably”. Some writers say that, “Bioethics is notabout thinking that we can always find one correct
solution to ethical problems.” I beg to differ and believethat there is actually only one answer to each of thosequestions and each answer is unique and intrinsic toeach culture and that has to be respected.
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Are Human Rights and
Health Care Universal?:Reflections on Health Carein India?
- M. Selvanayagam and Francis P Xavier SJ
Loyola Institute of Frontier Energy (LIFE), Loyola
College, Chennai-600034, India
Email: drmssel@yahoo.co.in
Introduction
Human rights and the right to health care have explicit
intrinsic connections and have emerged as powerfulconcepts with regard to human dignity and fullness oflife. A rights-based approach to health uses
International Human Rights treaties and proposes
norms to hold governments accountable for their
obligations. It recognizes the fact that the right tohealth is a fundamental right of every human being andit implies the enjoyment of the highest attainable
standard of health that governments have thebounden responsibility for the health of the citizens
which can be fulfilled only through the provision ofadequate health care and social concern. The sameshould get integrated into research, advocacy
strategies and research tools, including monitoring;
community education and mobilization; litigation andpolicy formulation. The right to the highest attainable
standard is encapsulated in Article 12 of theInternational Covenant on Economic, Social andCultural Rights.
The enjoyment of the highest standard, in any given
milieu is one of the fundamental human rights
without distinction of race, religion, political belief orsocial condition. Article 25 of the Universal Declarationof Human Rights is concerned with the right to health.
According to this article, everyone has the right to a
standard of living with reasonable health of oneself,
including food, clothing, housing, medical care asnecessary to ensure fullness of life. The preamble ofthe World Health Organization states that theenjoyment of the highest standard of health is afundamental right of every human being. Aristotelianphilosophy is based on the principle that it issociety's obligation to maintain and improve people's
health. Therefore, public health should focus on theindividual's capacity to function, and health policy
should aim to maintain and improve this capacity bymeeting health needs. The relationship between healthand economic development
istwo- directional.
Health affects labor productivity as well as investments
in physical and human capital and savings rates. In
the other direction, income can affect health anddemography by improving the ability to obtain food,114

Eubios Journal of Asian and International Bioethics 19 (July 2009)

sanitation and housing and by providing incentives toreduce the family size.
st
As we are in the later part of the first decade of 21
Century, the awareness on health care has increased
enormously and everyone wants to lead a healthy life.
National Governments and State Governments should
be positive to provide medical care for all. But, do thesefacilities and benefits reach out or are they available toall the citizens of the country? What are the existingdraw backs and problems? How to overcome suchproblems to universalize the health care to allirrespective of their economical and social status?
These would be discussed in the paper.
Paradigm shift: Policy to human rights approach
Our past experience over a period of more than sixty
years has not given any comprehensive and universal
access approach by developing selective schemes orprograms. Hence, our historical experience tells us that
we should abandon the policy approach and adopt thehuman rights route to assuring universal access to all
people for healthcare. The State is today talking ofhealth sector reform and hence it is the right time toswitch gears and move in the direction of right to healthand healthcare.
The right to healthcare is primarily a claim to anentitlement, a positive right, not a protective fence. As
entitlements rights are contrasted with privileges, groupideals, societal obligations, or acts of charity, and once
legislated they become claims justified by the laws of
the state (Chapman, 1993). The emphasis thus needs
to shift from „respect‟ and „protect‟ to focus more on„fulfill‟. For the right to be effective optimal resourcesthat are needed to fulfill the core obligations have to bemade available and utilized effectively.
Further, using a human rights approach also implies
that the entitlement is universal. This means there is no
exclusion from the provisions made to assure
healthcare on any grounds whether purchasing power,
employment status, residence, religion, caste, gender,
disability, and any other basis of discrimination. But thisdoes not discount the special needs of disadvantaged
and vulnerable groups who may need special
entitlements through affirmative action to rectify
historical or other inequities suffered by them.
Thus establishing universal healthcare through thehuman rights route is the best way to fulfill theobligations mandated by international law and domestic
constitutional provisions. International law, specifically
ICESCR, the Alma Ata Declaration, among others,
provide the basis for the core content of right to healthand healthcare. But country situations are very different
and hence there should not be a global core content, itneeds to be country specific. In India‟s case a certain
trajectory has been followed through the policy routeand we have an existing baggage, which we need tosort out and fit into the new strategy.
Present scenario
Specific features of this historical development can bedepicted as follows:A very large and unregulated private healthsector with an attitude that the existing policy is the best
one as it gives space for maximizing their interests
needs to be checked. A complete absence ofprofessional ethics and absolute disinterest inorganizing
aroundissuesofself-regulation,
improvement of quality and accountability, and need foran organised health care system needs to beaddressed.

A declining public health care system which
provides selective care through a multiplicity ofschemes and programs, and discriminates on the basisof residence (rural-urban) in providing for entitlements
for healthcare should be looked into.
The existing inequities in access to healthcare
based on employment status and purchasing powershould be reviewed.

Inadequate development of various preconditions of health such as water supply andsanitation, environmental health and hygiene andaccess to food should be taken care of.
Very large numbers of unqualified anduntrained practitioners should be checked.
Declining investments and expenditure in publichealth needs special care.
Adequate resource availability when we
account for out-of-pocket expenses needs attention.

Human power and infrastructure that arereasonably adequate, though inequitably distributed,
are the needs of the hour.

Wasteful expenditures due to lack of regulationand standard protocols for treatment should be
avoided.
Thus the operationalisation of the right to healthcare
will have to be developed keeping in mind what wehave and how we need to change it.
Right to Quality Healthcare:
Health is one of the goods of life to which man has aright; wherever this concept prevails the logicalsequence is to make all measures for the protection
and restoration of health to all, free of charge; medicine
like education is then no longer a trade - it becomes apublic function of the State ... Henry Sigerist
The quote used as the Preamble is very relevant to
the notion of right to healthcare. Sigerist said this long
ago and since then most of Europe and many othercountries have made this a reality. And today whensuch demands are raised in the developing countries,
India being one of them, it is said that this is no longer
possible - the welfare state must wither away and makeway for global capital! Europe is also facing pressures
to retract the socialist measures, with working classthstruggles had gained since 19 century. So we are in a
hostile era of global capital which wants to make profit
out of anything it can lay its hands on. But we are also
in an era when social and economic rights, apart fromthe civil and political rights, are increasingly on theinternational agenda and an important cause foradvocacy.
Thus health and health care are now being viewed
very much within the rights perspective and this isreflected in Article 12 “The right to the highest
attainable standard of health” of the International
Covenant on Economic, Social and Cultural Rights towhich India has acceded. According to the General
Comment 14 the Committee for Economic, Social andCultural Rights states that the right to health requires

Eubios Journal of Asian and International Bioethics 19 (July 2009)
availability, accessibility, acceptability, and quality withregard to both health care and underlying preconditionsof health. The Committee interprets the right to health,as defined in article 12.1, as an inclusive right
extending not only to timely and appropriate health care
but also to the underlying determinants of health, suchas access to safe and potable water and adequate
sanitation, an adequate supply of safe food, nutritionand housing, healthy occupational and environmental
conditions, and access to health-related education andinformation, including sexual and reproductive health.
Understanding of health and health care
The understanding of health and health care are speltout below:
The right to health in all its forms and at all levels
contains the following interrelated and essential
elements, the precise application of which will dependon the conditions prevailing in a particular State party:(a) Availability: Functioning public health and healthcare facilities, goods and services, as well as
programmes, have to be available in sufficient quantity
within the State party. The precise nature of the
facilities, goods and services will vary depending on
numerous factors, including the State party's
developmental level. They will include, however, theunderlying determinants of health, such as safe andpotable drinking water and adequate sanitation
facilities, hospitals, clinics and other health-relatedbuildings, trained medical and professional personnel
receiving domestically competitive salaries, andessential drugs, as defined by the WHO Action
Programme on Essential Drugs.
(b) Accessibility: Health facilities, goods and services
have to be accessible to everyone without
discrimination, within the jurisdiction of the State party.
Accessibility has four overlapping dimensions:i)
Non-discrimination: health facilities, goods andservices must be accessible to all, especially the mostvulnerable or marginalized sections of the population, inlaw and in fact, without discrimination on any of theprohibited grounds.
ii)
Physical accessibility: health facilities, goods
and services must be within safe physical reach for all
sections of the population, especially vulnerable or
marginalized groups, such as ethnic minorities andindigenous populations, women, children, adolescents,
older persons, persons with disabilities and persons
with HIV/AIDS. Accessibility also implies that medical
services and underlying determinants of health, such as
safe and potable water and adequate sanitation
facilities, are within safe physical reach, including inrural areas. Accessibility further includes adequate
access to buildings for persons with disabilities.
iii)
Economic accessibility (affordability): healthfacilities, goods and services must be affordable for all.
Payment for health-care services, as well as services
related to the underlying determinants of health, has tobe based on the principle of equity, ensuring that these
services, whether privately or publicly provided, areaffordable for all, including socially disadvantaged
groups. Equity demands that poorer households should115

not be disproportionately burdened with healthexpenses as compared to richer households.
iv)
Information accessibility: accessibility includes
the right to seek, receive and impart information andideas concerning health issues. However, accessibilityof information should not impair the right to havepersonal health data treated with confidentiality.
(c) Acceptability. All health facilities, goods andservices must be respectful of medical ethics andculturally appropriate, i.e. respectful of the culture ofindividuals, minorities, peoples and communities,
sensitive to gender and life-cycle requirements, as well
as being designed to respect confidentiality andimprove the health status of those concerned.
(d) Quality. As well as being culturally acceptable,
health facilities, goods and services must also be
scientifically and medically appropriate and of goodquality. This requires, inter alia, skilled medical
personnel, scientifically approved and unexpired drugs
and hospital equipment, safe and potable water, andadequate sanitation. (Committee on Economic, Social
and Cultural Rights Twenty-second session 25 April-12
May 2000)
Universal access to good quality healthcare equitably
is the key element at the core of this understanding ofright to health and healthcare. To make this possible
the State agencies are obligated to respect, protect andfulfill the above in a progressive manner:
The right to health, like all human rights, imposes
three types or levels of obligations on State parties: theobligations to respect, protect and fulfill. In turn, theobligation to fulfill contains obligations to facilitate,provide and promote. The obligation to respect requires
States to refrain from interfering directly or indirectlywith the enjoyment of the right to health. The obligation
to protect requires States to take measures that prevent
third parties from interfering with article 12 guarantees.
Finally, the obligation to fulfill requires States to adopt
appropriate legislative, administrative, budgetary,
judicial, promotional and other measures towards thefull realization of the right to health. (Ibid)
State parties are referred to the Alma-Ata Declaration,
which proclaims that the existing gross inequality in thehealth status of the people, particularly between
developed and developing countries, as well as withincountries, is politically, socially and economicallyunacceptable and is, therefore, of common concern toall countries. State parties have a core obligation toensure the satisfaction of, at the very least, minimum
essential levels of each of the rights enunciated in theCovenant, including essential primary health care.
Read in conjunction with more contemporary
instruments, such as the Programme of Action of theInternational
Conferenceon
Population
andDevelopment, the Alma-Ata Declaration provides
compelling guidance on the core obligations arisingfrom Article 12. Accordingly, in the Committee's view,
these core obligations include at least the following
obligations:(a)To ensure the right of access to health facilities,
goods and services on a non-discriminatory basis,
especially for vulnerable or marginalized groups;

116

Eubios Journal of Asian and International Bioethics 19 (July 2009)(b)
To ensure access to the minimum essential
food which is nutritionally adequate and safe, to ensure
freedom from hunger to everyone;(c)
To ensure access to basic shelter, housing andsanitation, and an adequate supply of safe and potablewater;(d)To provide essential drugs, as from time to time
defined under the WHO Action Programme on
Essential Drugs;(e)
To ensure equitable distribution of all healthfacilities, goods and services;(f)
To adopt and implement a national publichealth strategy and plan of action, on the basis of
epidemiological evidence, addressing the healthconcerns of the whole population; the strategy and planof action shall be devised, and periodically reviewed, on
the basis of a participatory and transparent process;they shall include methods, such as right to healthindicators and benchmarks, by which progress can beclosely monitored; the process by which the strategy
and plan of action are devised, as well as their content,
shall give particular attention to all vulnerable or
marginalized groups.
The Committee also confirms that the following are
obligations of comparable priority:(a)
To ensure reproductive, maternal (pre-natal aswell as post-natal) and child health care;(b)
To provide immunization against the major
infectious diseases occurring in the community;(c)
To take measures to prevent, treat and control
epidemic and endemic diseases;(d)
To provide education and access to information
concerning the main health problems in the community,
including methods of preventing and controlling them;(e)To provide appropriate training for healthpersonnel, including education on health and humanrights. (Ibid)
The above guidelines from General Comment 14 on
Article 12 of ICESCR are critical to the development of
the framework for right to health and healthcare. As areminder it is important to emphasize that in the Bhore
Committee report of 1946 we already had theseguidelines, though they were not in the 'rights'
language. Thus within the country's own policy
framework all this has been available as guiding
principles for now 56 years.
The growth over the years of healthcare services,
facilities, human power etc. has been inadequate andthe achievements not enough to make any substantive
impact on the health of the people. The focus of public
investment in the health sector has been on medical
education and production of doctors for the private
sector, support to the pharmaceutical industry throughstates own participation in production of bulk drugs at
subsidized rates, curative care for urban population andfamily planning services. The poor health impact we
see today has clear linkages with such a pattern ofinvestment:
The investment in medical education has
helped create a mammoth private health sector, notonly within India, but in many developed countries
through export of over one-fourth of the doctors
produced over the years. Even though since mideighties private medical colleges have been allowed,
still 75-80% of the outturn is from public medical

schools. This continued subsidy without any social
return is only adding to the burden of inequities andexploitation within the healthcare system in India.

Public sector participation in drug production
was a laudable effort but soon it was realized that thefocus was on capital goods, that is bulk drug
production, and most supplies were directed to private
formulation units at subsidized rates. It is true that the
government did control drug prices, but post midseventies the leash on drug prices was gradually
released and by the turn of the nineties controls
disappeared. Ironically, at the same time the public
pharmaceutical industry has also disappeared – thelittle of what remains produces a value of drugs lesser
than their losses! And with this withering away of public
drug production and price control, essential drugs
availability has dropped drastically. Another irony in thisstory is that while today we export 45% of our drug
production, we have to import a substantial amount of
our essential drug requirements.

Most public sector hospitals are located inurban areas. In the eighties, post-Alma Ata and India
ratifying the ICESCR, efforts were made towards
increasing hospitals in rural areas through theCommunity Health Centres. This was again a goodeffort but these hospitals are understaffed by over 50%
as far as doctors are concerned and hence become
ineffective. Today urban areas do have adequate
number of beds (including private) at a ratio of one bed
per 300 persons but rural areas have 8 times lesshospital beds as per required norms (assuming a normof one bed per 500 persons). So there is grossdiscrimination based on residence in the way thehospital infrastructure has developed in the country,
thereby depriving the rural population access tocurative care services. Further, the declining investmentin the public health sector since mid-eighties, and theconsequent expansion of the private health sector, has
further increased inequity in access for people acrossthe country. More recently a facility survey across thecountry by the Ministry of Health and Family Welfare
clearly highlights the inadequacies of the public healthinfrastructure, especially in the rural areas. This survey
is a major indictment of the underdevelopment of the
public healthcare system - even the District Hospitals,
which are otherwise well endowed, have a major
problem with adequacy of critical supplies needed to
run the hospital. The rural health facilities across theboard are ill provided. (MOHFW, 2001)

Family planning services is another area ofalmost monopolistic public sector involvement. The
investment in such services over the years has beenvery high, to the tune of over 15% of the total publichealth budget. But over and above this the use of theentire health infrastructure and other government
machinery for fulfilling its goals must also be added tothese resources expended. This program has also
witnessed a lot of coercion and grossly violated humanrights. The hard line adopted by the public healthsystem, especially in rural areas, for pushing population
control has terribly discredited the public health system
and affected adversely utilization of other healthprograms. The only silver lining within this program isthat in the nineties immunisation of children andEubios Journal of Asian and International Bioethics 19 (July 2009)
mothers saw a rapid growth, though as yet it is stillquite distant from the universal coverage level.
Then there are the underlying conditions of health andaccess to factors that determine this, which are equallyimportant in a rights perspective. Given the high level ofpoverty and even a lesser level of public sector
participation in most of these factors the question ofrespecting, protecting and fulfilling by the state is quite
remote. Latest data from NFHS-1998 tells the following
story:

Piped water is available to only 25% of the rural
population and 75% of urban population.

Half the urban population and three-fourths of
the rural population does not purify/filter the water inany way.

Flush and pit toilets are available to only 19%of the rural population as against 81% of those in towns
and cities.
Electricity for domestic use is accessible to
48% rural and 91% urban dwellers.

For cooking fuel 73% of villagers still use wood.
LPG and biogas is accessed by 48% urban households
but only 6% rural households.
As regards housing 41% village houses arekachha whereas only 9% of urban houses are so.

21% of the population chews paan masaala
and/or tobacco, 16% smoke and 10% consume alcohol.
Besides this, environmental health conditions in bothrural and urban areas are quite poor, working
conditions in most work situations, including manyorganized sector units, which are governed by various
social security provisions, are unhealthy and unsafe. Infact most of the court cases in India using Article 21 of
the Fundamental Rights and relating it to right to healthhave been cases dealing with working conditions at theworkplace, workers rights to healthcare andenvironmental health related to pollution.
Other concerns are related to the question of
economic accessibility. It is astounding that large-scale
poverty and predominance of private sector in
healthcare have to co-exist. It is in a sense acontradiction and reflects the State‟s failure to respect,
protect and fulfill its obligations by letting vast inequities
in access to healthcare and vast disparities in healthindicators, to continue to persist, and in many situations
get worse. Data shows that out of pocket expenses
account for over 4% of the GDP as against only 0.9 %of GDP expended by state agencies, and the poorer
classes contribute a disproportionately higher amountof their incomes to access health care services both in
the private sector and public sector. (Ellis et al, 2000;
Duggal, 2000; Peters et al, 2002). Further, the better offclasses use public hospitals in much larger numberswith their hospitalization rate being six times higher
than the poorest classes, and as a consequence
consume an estimated over three times more of public
hospital resources than the poor (NSS-1996; Peters etal, 2002).
Related to the above is another concern vis-à-vis
international human rights conventions‟ stance onmatters with regard to provision of services. Allconventions talk about affordability and never mention

117„free of charge‟. In the context of poverty this notion isquestionable as far as provisions for social security likehealth, education and housing go. Access to thesefactors socially has unequivocal consequences forequity, even in the absence of income equity. Free
services are viewed negatively in global debate,especially since we have had a unipolar world, because
it is deemed to be disrespect to individual responsibility
with regard to their healthcare. (Toebes, 1998, p.249)
For instance in India there is great pressure on publichealth systems to introduce or enhance user fees,
especially from international donors, because they
believe this will enhance responsibility of the publichealth system and make it more efficient (Peters et al,2002). In many states such a policy has been adopted
in India and immediately adverse impacts are seen, themost prominent being decline in utilization of public
services by the poorest. It must be kept in mind thatIndia's taxation policy favours the richer classes. Our
tax base is largely indirect taxes, which is a regressive
form of generating revenues. Direct tax revenues, likeincome tax is a very small proportion of total tax
revenues. Hence the poor end up paying a larger
proportion of their income as tax in the form of sales
tax, excise duties etc on goods and services they
consume. Viewed from this perspective the poor havealready pre-paid for receiving public goods like healthand education from the state free of cost at the point ofprovision. So their burden of inequity increases
substantially if they have to pay for such services whenaccessing from the public domain.
The above inequity in access gets reflected in healthoutcomes, which reflect strong class gradients. Thus
infant and child mortality, malnutrition amongst womenand children, prevalence of communicable diseases liketuberculosis and malaria, attended childbirth are
between 2 to 4 times better amongst the better offgroups as compared to the poorest groups (NFHS1998). In this quagmire of poverty, the genderdisparities also exist but they are significantly smaller
than the class inequities. Such disparity, and theconsequent failure to protect by the state the health of
its population, is a damning statement on the healthsituation of the country. In India there is an additional
dimension to this inequity – differences in healthoutcomes and access by social groups, specifically thescheduled castes and scheduled tribes. Data showsthat these two groups are worse off on all counts whencompared to others. Thus in access to hospital care as
per NSS-1996 data the STs had 12 times less accessin rural areas and 27 times less in urban areas ascompared to others; for SCs the disparity was 4 and 9times, in rural and urban areas, respectively. What isastonishing is that the situation for these groups isworse in urban areas where overall physical access isreasonably good. Their health outcomes are adverse by
1.5 times that of others (NFHS-1998).
Another stumbling block in meeting state obligations is
information access. While data on public healthservices, with all its limitations, is available, data on theprivate sector is conspicuous by its absence. The
private sector, for instance does not meet its obligations
to supply data on notifiable, mostly communicable,

118

Eubios Journal of Asian and International Bioethics 19 (July 2009)diseases, which is mandated by law. This adversely
affects the epidemiological database for those diseases
and hence affects public health practice and monitoring
drastically. Similarly the local authorities have miserably
failed to register and record private health institutions
and practitioners. This is an extremely importantconcern because all the data quoted about the private
sector is an under-estimate as occasional studies haveshown. The situation with regard to practitioners isequally bad. The medical councils of all systems of
medicine are statutory bodies but their performance
leaves much to be desired. The recording of their own
members is not up to the mark, and worse still since
they have been unable to regulate medical practicethere are a large number of unqualified and untrained
persons practicing medicine across the length andbreadth of the country. Estimates of this unqualified
group vary from 50% to 100% of the proportion of thequalified practitioners (Duggal, 2000; Rhode et al,1994). The profession itself is least concerned about
the importance of such information and hence does notmake any significant efforts to address this issue. This
poverty of information is definitely a rights issue even
within the current constitutional context as lack of suchinformation could jeopardize right to life.
Finally there are issues pertaining to acceptability andquality. Here the Indian state fails totally. There is aclear rural-urban dichotomy in health policy andprovision of care; urban areas have been provided
comprehensive healthcare services through public
hospitals and dispensaries and now even astrengthened preventive input through health posts for
those residing in slums. In contrast rural areas havelargely been provided preventive and promotive
healthcare alone. This violates the principle of nondiscrimination and equity and hence is a major ethicalconcern to be addressed.
Medical practice, especially private, suffers from acomplete absence of ethics. The medical associations
have as yet not paid heed to this issue at all and over
the years malpractices within medical practice havegone from bad to worse. In this malpractice game thepharmaceutical industry is a major contributor as it
induces doctors and hospitals to prescribe irrational
and/or unnecessary drugs. All this has drastic impacts
on quality of care. In clinical practice and hospital carein India there exist no standard protocols and hencemonitoring quality becomes very difficult. For hospitals
the Bureau of Indian Standards have developed
guidelines, and often public hospitals do follow theseguidelines (BIS, 1989; Nandraj and Duggal, 1997). But
in the case of private hospitals they are generally
ignored. Recently efforts at developing accreditation
systems has been started in Mumbai (Nandraj et al,2000), and on the basis of that the Central government
is considering doing something at the national level on
this front so that it can promote quality of care.
First Steps Towards a Right to Healthcare:
To establish a right to healthcare with the above
scenario certain first essential steps will be compulsory:equating directive principles with fundamental
rights through a constitutional amendment;
incorporating a National Health Act (similar to
the Canada Health Act) which will organize the present

healthcare system under a common umbrellaorganization as a public-private mix governed by anautonomous national health authority which will also be
responsible for bringing together all resources under asingle-payer mechanism;
generating a political commitment throughconsensus building on right to healthcare in civilsociety;
development of a strategy for pooling all
financial resources deployed in the health sector; and
redistribution of existing health resources,
public and private, on the basis of standard norms(these would have to be specified) to assure physical(location) equity
As an immediate step, within its own domain, theState should undertake to accomplish the following:
Allocation of health budgets as block funding,that is on a per capita basis for each population unit ofentitlement as per existing norms. This will create
redistribution of current expenditures and reduce
substantially inequities based on residence. Local
governments should be given the autonomy to use
these resources as per local needs but within a broadly
defined policy framework of public health goals.

Strictly implementing the policy of compulsory
public service by medical graduates from public medical
schools, as also make public service of a limited
duration mandatory before seeking admission for postgraduate education. This will increase human resources
with the public health system substantially and will havea dramatic impact on the improvement of the credibilityof public health services.

Essential drugs as per the WHO list should be
brought back under price control (90% of them are offpatent) and/or volumes needed for domestic
consumption must be compulsorily produced so thatavailability of such drugs is assured at affordable prices
and within the public health system.

Local governments must adopt location policies
for setting up of hospitals and clinics as per standard
acceptable ratios, for instance one hospital bed per 500
population and one general practitioner per 1000
persons. To restrict unnecessary concentration of such
resources in areas fiscal measures to discourage suchconcentration should be instituted.

The medical councils must be madeaccountable to assure that only licensed doctors arepracticing what they are trained for. Such monitoring is
the core responsibility of the council by law which they
are not fulfilling, and as a consequence failing to protect
the patients who seek care from unqualified anduntrained doctors. Further continuing medical educationmust be implemented strictly by the various medical
councils and licenses should not be renewed (as perexisting law) if the required hours and certification is notaccomplished.
Integrate ESIS, CGHS and other such
employee based health schemes with the generalpublic health system so that discrimination based on
employment status is removed and such integration will
help more efficient use of resources. For instance, ESIS
is a cash rich organization sitting on funds collectedfrom employees (which are parked in debentures andEubios Journal of Asian and International Bioethics 19 (July 2009)
shares of companies!), and their hospitals anddispensaries are grossly under-utilised. The latter could
be made open to the general public.
Strictly regulate the private health sector as perexisting laws, but also an effort to make changes inthese laws to make them more effective. This willcontribute towards improvement of quality of care in theprivate sector as well as create some accountability.
Strengthen the health information system anddatabase to facilitate better planning as well as audit
and accountability.
Carrying out the above immediate steps, for which weneed only political commitment and not any radicaltransformation, will create the basis to move in the
direction of first essential steps indicated above. In
order to implement the first-steps the essential corecontents of healthcare have to be defined and madelegally binding through the processes of the first-steps.
The literature and debate on the core contents is quite
vast and from that we will attempt to draw out the corecontent of right to health and healthcare keeping theIndian context discussed above in mind.
The Core Content of Right to Healthcare
In the words of Chapman: “Operatively, a basic andadequate standard of healthcare is the minimum levelof care, the core entitlement, that should be guaranteed
to all members of society: it is the floor below which noone will fall” (Chapman, 1993). She further states thatthe basic package should be fairly generous so that it is
widely acceptable by people, it should address special
needs of special and vulnerable population groups likeunder privileged sections (e.g. scheduled castes andtribes in India), women, physically and mentallychallenged, elderly etc it should be based on costconscious standards but judge to provide services
should not be determined by budgetary constraints, andit should be accountable to the community as also
demand the latter‟s participation and involvement inmonitoring and supporting it. All this is very familiar
terrain, with the Bhore Committee saying precisely thesame things way back in 1946.
We would like to put forth the core content as thePrimary care services that should include at least thefollowing:General practitioner/family physician services
for personal health care.
First level referral hospital care and basic
specialty services (general medicine, general surgery,obstetrics
andgynecology,
paediatrics
andorthopaedic), including dental and ophthalmic services.

Immunisation services against all vaccine
preventable diseases.
Maternity and reproductive health services forsafe pregnancy, safe abortion, delivery and postnatal
care and safe contraception.
Pharmaceutical services - supply of only
rational and essential drugs as per accepted standards.

Epidemiological services including laboratory
services, surveillance and control of major diseases
with the aid of continuous surveys, information
management and public health measures.

119Ambulance services.

Health education.
Rehabilitation services for the physically andmentally challenged and the elderly and othervulnerable groups.
Occupational health services with a clear
liability on the employer.

Safe and assured drinking water and sanitation
facilities, minimum standards in environmental healthand protection from hunger to fulfill obligations ofunderlying preconditions of health.
The above listed components of primary care are theminimum that must be assured, if a universal healthcare system has to be effective and acceptable. And
these have to be within the context of first-steps and not
to wait for progressive realisation – these cannot be
broken up into stages, as they are the core minimum.
The key to equity is the existence of a minimum decent
level of provision, a floor that has to be firmly
established. However, if this floor has to be stablecertain ceilings will have to be maintained toughly,
especially on urban health care budgets and hospitaluse (Abel-Smith, 1977). This is important because
human needs and demands can be excessive andirrational. Those wanting services beyond theestablished floor levels will have to seek it outside thesystem and/or at their own cost.
Therefore it is essential to specify adequate minimum
standards of health care facilities, which should bemade available to all people irrespective of their social,
geographical and financial position. There has beensome amount of debate on standards of personnel
requirements [doctor: population ratio, doctor: nurse
ratio] and of facility levels [bed: population ratio, PHC:
population ratio] but no global standards have as yet
been formulated though some ratios are popularly
used, like one bed per 500 population, one doctor per1000 persons, 3 nurses per doctor, health expenditure
to the tune of 5% of GDP etc.
We are at a stage in history where political will to dosomething progressive is conspicuous by its absence.
We may have constitutional commitments and backing
of international law but without political will nothing will
happen. To reach the goals of right to health andhealthcare discussed above civil society will have to be
involved in a very large way and in different ways.
The initiative to bring healthcare on the political
agenda will have to be a multi-pronged one and fought
on different levels. The idea here is not to develop aplan of action but to indicate the various steps andinvolvements that will be needed to build a consensus
and struggle for right to healthcare. We make thefollowing suggestions:
Policy level advocacy for creation of anorganized system for universal healthcare
Research to develop the detailed framework of
the organized system
Lobbying with the medical profession to build
support for universal healthcare and regulation of
medical practiceFiling a public interest litigation on right tohealthcare to create a basis forconstitutional amendment

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Eubios Journal of Asian and International Bioethics 19 (July 2009)


Lobbying with parliamentarians to demandjustice be protected in directive principles
Holding national and regional consultations onright to healthcare with involvement of a wide array ofcivil society groups
Running campaigns on right to healthcare with
networks of peoples organizations at the national andregional level
Bringing right to healthcare on the agenda ofpolitical parties to incorporate it in their manifestoes
Pressurizing international bodies like WHO,
Committee of ESCR, UNCHR, as well as national
bodies like NHRC, NCW to do effective monitoring ofIndia‟s state obligations and demand accountability
Preparing and circulating widely shadow
reports on right to healthcare to create internationalpressure
The above is not an exhaustive list. The basic idea isthat there should be widespread dialogue, awarenessraising,
research,documentation
andlegal/constitutional discourse. CEHAT has developed
an action plan towards facilitating the realization of thisagenda collaboratively with a range of civil society
actors through a national initiative on right to health andhealthcare in India.
Overview
It is evident that the neglect of the public healthsystem is an issue larger than government policy
making. The latter is the function of the overall political
economy. Under capitalism only a well-developed
welfare state can meet the basic needs of its
population. Given the backwardness of India thedemand of public resources for the productive sectorsof the economy (which directly benefit capital
accumulation) is more urgent (from the businessperspective) than the social sectors, hence the latterget only a residual attention by the state. The policy
route to comprehensive and universal healthcare has
failed miserably. It is now time to change gears towards
a rights-based approach. The opportunity exists in theform of constitutional provisions and discourse,international laws to which India is a party, and thepotential of mobilizing civil society and creating a sociopolitical consensus on right to healthcare. USIBC
President Ron Somers said: "Access to effective andaffordable healthcare is essential to ensure India's
remarkable growth," while announcing the initiative of
the body representing over 250 of the largest US firms
investing in India and about 25 of India's largest global
companies.
Government is only part of the solution. We must
harness the dynamism of the private sector for thiseffort to be successful. The goal is to make patient
outcomes as good in India as they are in any other partof the world. India‟s healthcare system is quickly
expanding, but faces considerable challenges – to be
expected in a country rapidly transitioning into a global
economic power. It must satisfy the rising demands andexpectations of the burgeoning middle class, while
addressing the needs of those not benefiting from
economic development. Nevertheless, India has anopportunity to avoid the problems that healthcare

systems in many developed countries are experiencing
by transforming financing and delivery, redefining theaccountabilities of stakeholders, and improving quality
and access.
India has had notable health achievements since
Independence in 1947. The country‟s population has
increased from 361 milliion 1951 to 1.13 billion in 2007(a 313 percent increase). Life expectancy has morethan doubled (32 years to 68.6), infant mortality rate
has decreased 76.3 percent (146 per 1000 babies to34.6) and crude death rate has fallen 73.7 percent (25.1
per 1000 population to 6.6).
Other achievements include eradication of somediseases (small pox and guinea worm) and nearelimination of others (for example, leprosy and polio).
India‟s doctors and hospitals are also increasingly
receiving recognition for the quality of care they
provide. Their services cost a fraction of those of their
India‟s burgeoning middle class has greater access to
excellent healthcare, but the vast majority of citizens
have limited access to basic healthcare of varying
quality. While government health services are by law
free, patients must often pay for drugs out-of pocket toget sustained treatment. More than 40 percent of
hospitalized patients borrow money or sell assets for
medical care and 24 percent become impoverished due
to medical crises.
An examination of healthcare systems in othercountries underscores the importance of achieving avalue-based, affordable, sustainable healthcare system
in India. In a recent study by the IBM Institute for
Business Value demonstrated that unrelentingpressures are pushing many healthcare systems along
an unsustainable path. If left unaddressed, many
countries will reach a breakpoint in their current paths,
forcing immediate and major forced restructuring. What
does this mean for India? Without significant changes,
an unsustainable path for India could have publichealth, economic, social and political ramifications. For
example, the healthcare infrastructure will remain
fragmented, focused on acute, reactive, episodic careand will be inaccessible, particularly in rural areas.
There is also the potential impact on prematuremorbidity/mortality due to unaffordable, inaccessible
and inconsistent quality of healthcare. And the IBM
Global Business Services insufficient healthcaredelivery capacity would exacerbated, as providers areburdened by such issues as workforce shortages, costsof treating the uninsured and overcrowding. There areother ramifications of the status quo. Economically,
continued depletion in the quality and quantity ofgeneral work force and lead to lower national output innational income. Between 2005 and 2015, for example,
heart disease, stroke and diabetes are expected toaccount for Rs 1,040,800 crores (US$ 236 billion) inlost productivity. Socially, there would likely be a
reduced transfer of skills and wealth across generations
and continued developmental losses for children.
Politically, India could fail to deliver healthcare as afundamental public right for all citizens. Moreover, there
would be a possible loss of global competitiveness as
the country‟s health status is unable to effectively
support its ambitious economic growth plans.

Eubios Journal of Asian and International Bioethics 19 (July 2009)
Conclusion
Everyone born in the world should live a full human
life. To make this possible, a health care system andhygienic environment and effective livelihood need to
be assured for all citizens. In the world today medical
advancement is progressing very fast and the quality oflife is on the increase, thereby making people live
longer and longer. While the medical advancement in
the industrialized countries is making progress theavailability of medical facilities in many developing
countries are abysmal. It is the responsibility of theState to provide with adequate health care especiallyfor the children who are the future hope of the nationand the globe.
In the first place the people, especially those in therural areas, should be given awareness with regard to
health care especially preventive measures to be taken
to avoid infection and diseases. Health cares should be
not only accessible but affordable – The State shouldcome to the rescue of the poor in providing effective
health care system. Primary care centers should begiven priority and in State run medical centers all
facilities should be extended without any difficulty –Strict laws should be enforced against corruption inproviding medical aids and negligence of duty inemergency.
The neighbourhood outreach programme could be
introduced in educational institutions especially in
medical institutions where the students spend
considerable time with the poor, in the slums in cities
and rural areas, teaching them hygiene and helping
them have health care facilities. The medical students
could be asked to spend a couple of years of theirservice in the rural areas.
Also traditional medicine, such as herbal, Ayurvedic,
Sidha etc, could be encouraged by the State which
could give effective medical facilities at much lower costof care. The State should make it clear that the people
are the wealth of the nation and health is the first
concern as well as area of investment for any nation.

121

Do the Developing Countries
with High Disease Burdens
Need to Take a More Active
Role in Defining Health andDisease?
- Chhanda Chakraborti
Associate Professor in Philosophy, Department of
Humanities and Social Sciences, Indian Institute ofTechnology Kharagpur, India.
Email: chhanda@iitkgp.ac.in, chhandac@gmail.com- Rhyddhi Chakraborty
Doctoral student, Department of Humanities and Social
Sciences, Indian Institute of Technology Kharagpur,
India.
Do developing countries with high disease burden
need to take a more active role in developing, or
adhering to, a conceptualization of health and disease
that is more relevant for them? This paper argues that
there are number of reasons to make a rather
compelling case to answer in the affirmative.
First, the facts. There can be no doubt that great
health disparities still persist among the countries in theworld. In spite of great advances in medical technology,
medicine, and treatment, and high-spirited initiatives
such as Alma Ata (1978), the disparities in health status
remain stark between the populations of the developed
countries and the developing countries in particular. To
date, the poorer countries, as a matter of fact, see moreof death, disease and disability.
The WHO fact sheets show that the developing
countries in Africa and Asia bear a disproportionately
high disease burden from an array of major fatal
communicable and endemic diseases. For example,
though incidences fell in certain countries, WHO reportsthat in 2008 Malaria is endemic in 109 countries andpreventable deaths from Malaria is close to a million
32
lives, with mostly that of children under 5, in Africa .
The 1.2 billion people who are at high risk from Malaria
are mostly living in the developing nations of Africa(49%) and Southeast Asia (37%). Similarly, the WHO
33
tuberculosis (TB) 2009 report mentions twenty-two
high-burden countries, covering 80% of world‟s TB
cases, which almost without exception belong to thedeveloping world. The report also mentions that the coinfection of HIV-TB and the drug-resistant variety of TB
in some of these countries are matters of great
concern, as one out of four TB deaths in 2007 was HIVrelated. Since the burden of non-communicablediseases was found to be no less on the developing

32

WHO. World Malaria Report 2008. Geneva: WHO.
Available at: http://apps.who.int/malaria/wmr2008/ [Accessedon 29 May 2009].
33
WHO. Key Points: Gobal TB Control 2009. Geneva: WHO.
Available at:www.who.int/tb/publications/global_report/2009/key_points/

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Eubios Journal of Asian and International Bioethics 19 (July 2009)

countries, WHO has named the burden of the34
developing countries the „double burden‟ of diseases.
Although the recent global outbreaks such as the2009 global spread of A H1N1 flu showed that the risk
from a global pandemic is a great leveler for thecountries across the globe, epidemiological models
predict that the impact may be more severe forcountries with weaker health systems. In case of an
influenza pandemic analogous to that of 1918, it isclaimed that the maximum loss of life would occur in
two developing regions: Sub-Saharan Africa and South
35
Asia , two of the world‟s poorest regions with weakest
health systems. The risk disparity is underscored by thefact that the lower income countries with high-disease
burdens usually have weak public health infrastructure,poor and inefficient healthcare delivery services,whereas most developed countries have highlysophisticated health systems equipped much better toprovide specialized care and protection from bio-risk.
If we consider these key differences among thedeveloped and developing countries in health anddisease status, and in the capability of the healthsystems, consequently in the health needs, a question
rises whether given their own contexts the lower
income countries should become more involved inarticulating how they want to conceptualize „health‟ and„disease‟. The question is both timely and pertinent.
For, health sector reforms and health policy formulation
have been and are at present on the agenda of many36
developing countries. Though some studies regard
them as being driven and directed primarily by theconditions laid down by the World Bank credits, theefforts at health sector reforms are likely to affectpositively the provision, financing, human resources,and overall healthcare management.
India, forinstance, is in the process of making some majorchanges in the health sector. In 2005 the National Rural
Health Mission was launched by Government of India toprovide accessible, affordable, and quality healthservices to even the poorest in remotest rural regions
by directing increased government financing to thestate public health systems. The latest review (2008) of
the Mission finds that, among other things, there has
been a general improvement in the utilization of public
37
health services . The Ministry of Health and Family
Welfare, India, has also initiated a National Bill on
38„Right to Health‟ which is at present at the drafting
34

WHO. Surveillance of noncommunicable disease risk
factors Available at:
http://www.who.int/mediacentre/factsheets/fs273/en/e
35
C.J.L. Murray, A.D. Lopez, B.Chin, D.Feehand, K.H.Hill.
Estimation of Potential Global Pandemic Influenza Mortality
on the basis of Vital Registry Data from 1918-20 Pandemic: A
Quantitative Analysis. Lancet 2006; 368: 2211-2218.
36
Shiner, A. Shaping Healthcare in Tanzania-Who is pullingthe strings? Lancet 2003; 362:829-830.
37
Ministry of Health and Family Welfare, Government ofIndia. 2008. Second Common Review Mission. National Rural
Health Mission. New Delhi, India: Govt of India. Available at:
http://www.mohfw.nic.in/NRHM.htm [ Accessed on: 25 May
2009]
38

Ministry of Health and Family Welfare, Government ofIndia. The National Health Bill. 2008. Available at:
http://mohfw.nic.in/nrhm/draft_bill.htm

stage but when passed would arguably confer on every
citizen an entitlement to health and healthcare.
Apparently China also has launched health-sector
39
reform plans . Similar efforts are on in different stagesof development in many of the African countries, suchas Nigeria, Zambia. Thus, at this stage bioethicaldeliberations among the developing countries on the
nodal concepts of „health‟ and „disease‟ will be of
constructive assistance.
It is a question of ethics also; for, a definition of health,even an operational one, is necessary as a guiding
principle for the health sector reforms. Similarly, weneed a definition of „disease‟. Definitions of these key
concepts shape the vision on which public health policy
may be formulated and public health system may beorganized. The implications of the definitions cover,among other things, the conditions under whichbudgetary increments will be allocated to healthcare
resources and services, how the healthcare priorities
are to be set nationally in terms of research andintervention programs, and who will be treated in needof care and who will not be.
However, like many other abstract concepts, e.g.
„peace‟, „welfare‟, the concepts of „health‟ and „disease‟too have many available definitions. The panoply ofvarious definitions of health could be appreciated fromthe following observation of Hood et al:“…health is difficult to define. Health is described invarious sources as a value
judgment, a subjective
state, a relative concept, a spectrum, a cycle, aprocess, an abstraction that cannot be measured
objectively.
In many definitions, physiologic andpsychological components of health are dichotomized.
Other sub-concepts thatmight be included indefinitions of health include environmental and social
influences, freedom from pain or disease, optimum
capability, ability to adapt, purposeful direction and40
meaning in life, and sense of well-being.”
As for „disease‟, at least two approaches, a normative
41
or evaluative one advocated by Engelhardt Jr and an
42
objective or value-neutral one offered by Boorse , arewell-established in the literature.
This indicates, among other things, that the concepts
are open to interpretation. It also suggests that thedifferences in the available definitions of theseconcepts, like in case of other definitions, largely reflect
the differences in the social and political milieu fromwhich they emerged and in the interests that have
driven them. For example, preoccupied traditionally withthe task of prevention and medical solution of the
problem of diseases and disease-causing agents(„germs‟), the clinical or the medical model naturally
found health in the simple dichotomy as „the absence of
39

Chen, Z. Launch of the Healthcare Reform Plan in China.
Lancet 2009; 373 (9672): 1322-1324.
40
Hood, Lucy, J. Susan Leddy, J.Mae Pepper. 2005. Leddyth
and Pepper’s Conceptual Bases Of Professional Nursing. 6
Ed. Lippincott Williams and Wilkins, 203-204.
41
Engelhardt, Tristram, Jr. The Disease of Masturbation:
Values and the Concept of Disease. Bulletin of the History ofMedicine, 1974; 48 (2): 243-248.
42
Boorse, C. On the Distinction between Disease and Illness.
Philosophy and Public Affairs 1975; 5 (1): 49-68.

Eubios Journal of Asian and International Bioethics 19 (July 2009)disease‟. The straightforward but narrow focus of thisdefinition
obviously
missesoutthesocial,environmental, the genomics, and other determinants ofhealth, but it remains true to its point of interest: To
define undesired, treatable conditions as disease, andto restore health by eradicating disease. The
ecologically dedicated environmental model of health,similarly, depicts health as the state of equilibrium or
adjustment between human and natural environment.
Obviously,
there
can
possiblybedifferentinterpretations of what counts as „equilibrium‟ or what
are the necessary conditions for such „adjustment‟; but
the model is able to draw our attention to the place ofhumans as just another member in a larger ecosystem.
The WHO, on the other hand, because of its
commitment to positive health, and not merely to„absence of disease‟, has tried to define health as
holistically as possible: as a state of complete physical,
mental, and social well-being and not merely the43absence of disease or infirmity . This highly idealized
and too wide a definition has been criticized by many.
However, it has accomplished its goal of including
many well-being needs under healthcare needs. As
Beauchamp and Walters put it, „The broader theconception of health, the broader the potential list of44
45
needs‟. Boddington and Raisanen claim that there isalso a political dimension to this widening of thedefinition in the post-world war days. They argue that
health as a human right requires a huge commitment of
resources, and with the broadness in the definition
using a larger context, the resources could come, notjust from standard health care, but from many different
social, economic and political sectors. The Alma Ata(1978) declaration pronounces a similar holistic
definition of health as a „world-wide social goal‟.
Similarly, the concept of „disease‟ also is interpretable.
From the viewpoint of healthcare professionals, it may
be a pathological condition, a deviation from normal
functioning; while some may interpret it as a deviationfrom socially expected roles or from social etiquettes.
Given that contextual interpretations and interests
shape definitions, it may be
more fruitful if thedeveloping countries, specially the ones with highdisease burdens, draw from their own contexts toenrich the international deliberations with inputs about
which conceptualizations of „health‟ and „disease‟ would
be more suitable for them. These inputs could also help
us to understand developing world bioethical issues
better. We generally assume that we as a society are
obligated to promotion of health and protection from
disease and disability; and expect that governments asimportant machineries would translate this collective will
into action. From the perspective of developing world
bioethics, it would be interesting to find out how exactly

43

WHO,
1947.
Availableat:
http://www.who.int/about/definition/en/print.html
44
Beauchamp, T.L. & L.Walters. Eds. Contemporary Issues inrdBioethics. 3 Ed. Belmont, CA: Wadsworth Publishing Co, 73.
45
Boddington P & U.Raisanen. Theoretical and Practical
Issues in the Definition of Health: Insights from AboriginalAustralia. Journal of Medicine and Philosophy 2009; 34: 4967.

123

the high burden developing countries would own andjustify this obligation.
Lately, in the developed countries, there have been
many theoretical discussions on health, healthcare, andmacro-allocation and micro-allocation issues in healthpolicies at different levels. There are debates about
how to ground the social obligation towards health on asound ethical theory. Many consider it purely a matterof social justice. Drawing from Rawls‟ theory of justice,
Daniels, for example, has chosen to view health as„normal functioning‟ or „…absence of …deviation fromthe natural functional organization of a typical member
46
of a species‟ to argue that health is of special moral
importance because of its connection to social justice.
He argues that health, when understood in theabovementioned sense becomes the precondition forenjoying the „normal opportunity range‟ (NOR) or the
total range of reasonable life-plans in a given societythat the society‟s members with relevant skills and47
competence can pursue . A just society should havean obligation to protect the individual fair share of NOR,
i.e. „the set of plans of life a person functioning normally
could pursue, given her talents and skills (developed
48
under just conditions)‟ . Thus, Daniels contends, a justsociety should have an obligation to protect the healthof its members.
In a similar line but focusing more on the social
obligation to remove health disparities within a society,49
Anand et al has brought out the equity aspect ofsocial commitment in public health. Extending Sen‟s
50
capability approachto human development,
51
Nussbaum too has understood human development interms of development of not just the GNP but of ten
basic human capabilities, which includes bodily health.
In contrast to these theories in which health has beenpromoted as instrumental for making other importantlife-choices, WHO, however, has claimed health as anend, or a human value in itself, in its declaration ofhealth as a human right.
These efforts are indeed valuable, but these are yet totake place in the developing countries. This invites thequestion whether the developing countries should
simply „borrow‟ the thoughts. Is it necessary for them todo so? It appears that there may be practical andconceptual difficulties in assuming so, and we do notjust mean the operational problem of implementing atypical western concept and a western approach in a
non-western culture, though with the example ofAustralian aboriginals Boddington and Raisanen haveargued that ideas of health and disease may vary in
different cultural contexts and the notion of importing an
46

N.Daniels. 2008. Just Health: Meeting Health Needs Fairly.
New York: Cambridge University Press, p.37.
47
Ibid. p.36.
48
Ibid., p.37.
49

S. Anand, F.Peter, and A.Sen. Eds. 2004. Public Health,
Ethics and Equity. New York: Oxford University Press.
50

Sen, A. 1985. Commodities and Capablities. Oxford: Oxford
University Press.
51
Nussbaum, Martha C. 2000. Women and Human
Development: The Capabilities Approach.
Cambridge
University Press, Cambridge.

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52

external idea sits uneasily on a community . We thinkthat the systemic differences between the two kinds ofsocieties are large enough to be skeptical about
supposing what a developed society finds suitable as a
pursuable notion of health and acceptable notion of
disease would naturally be appropriate for a lessdeveloped one also.
For instance, consider Daniel‟s version of „health‟ asa precondition for protection of „normal opportunity
range‟ (NOR) that an individual may enjoy in a society.
This depiction, however, seems to presume that an
exercisable NOR, or a set of life-choice plans, exists(should exist) for every individual member in any given
society. Perhaps that presumption is correct in mostdeveloped societies. But, how safe is that assumption
in case of hugely populated developing countries,
where the available basic NORs can not exist for every
individual because necessarily there are more takers,
with relevant skill and talent, than opportunities? Most
individuals in many such societies simply do not havethe luxury to exert individual choices over life-plans, orover the career path, that they want to pursue. Instead,they follow just whatever opportunity by „natural lottery
and social lottery‟ becomes available. And, with thatdecision usually there is very little connection to theconsiderations of the state of „natural functionalorganization‟ of one‟s bodily system. It is a survivability
issue.
Daniels‟ theory appears to rely upon a „decent
minimum‟ threshold of just distribution of Rawlsian
primary opportunities and liberties in a society as a prerequisite. Based on that, he views health as anecessary condition for living a chosen life in thatsociety. However, in many developing countries, for avariety of reasons it may not be possible to sociallyguarantee that minimal threshold for everyone. There,
the onus often is largely on the individual to ensure thatwelfare remains above a certain threshold at all times.
Since the applicability of the pivotal concept ofindividual‟s fair share of NORs is doubtful, thegrounding of Daniel‟s approach within the context ofdeveloping countries becomes questionable. Though
Daniels has claimed his theory is globally applicable,
the process of its real-world applications remains
largely unclear.
This is not to argue that developing countries mustnever follow the precepts from the developed nations.
Rather, the point is that it is not safe to assume thatthey must always blindly do so.
So, how should the high burden countries proceed?
One initial suggestion may be that, as has been alreadydiscussed above, diseases and disabilities, more thanhealth, seem to be relatively weightier considerations
for these countries. At least given the fact of large
number of lives lost in these countries because of
preventable, treatable diseases, perhaps they should
start first with how they would like to approach theconcept of „disease‟ and may consider making „absenceof disease‟ a more ethical and pragmatic priority in theirhealth policies. „Health‟ may follow as a subsequentgoal.
This may sound to some as just verbal jugglery; theymight ask, what is „absence of disease‟ if not health? In
52

Boddington, P., & U.Raisanen, op.cit., note 14, pp.62-63.

response, let us remind ourselves that „absence ofdisease‟, except for medical model, is not health. A
person who is generally dissatisfied with life andtherefore cannot keep up his performance at job does
not have to have a disease, but may not be healthy
either. Someone who has only one kidney has absenceof health but need not be considered diseased. An
aged person may not be in health, but need not be
diseased. In fact, the concepts of „health‟ and „disease‟need not be mutually exhaustive. Hoffman, for example,
has interestingly suggested a disjunctive model inwhich „health‟ and „disease‟ are opposite but partly
disparate concepts with „epistemological, taxonomical,
53
etymological, axiological and practical differences‟
between them. Explorations are necessary to find out
what would suit the developing world health policies
and action plans better.
Finally, one might object that if all the countries,
developed and developing, do not commit themselves
to a universal and common understanding of „health‟and „disease‟, then particularly the developing countries
with high disease burdens may suffer. For, they thenwould disassociate themselves from the purview of theuniversal discussions, such as health as a human right,
and that of universal policies, such as increased
financing in the health sector to ensure global healthsecurity. To this, the response could be that this is not a
proposal for high burden countries to delink themselvesfrom the international discourse on health and disease.
Rather, this is to urge them to carve their own nichewithin the discourse. Also, for many developing
countries engaging themselves in the task of defining,or choosing a definition of, crucial concepts such as„health‟ and „disease‟ for themselves could augur the
beginning of a realization about accepting the larger
responsibility of health and healthcare for their general
populace. The possibility always remains that healthreform efforts, when done purely under externalpressure, be it the compulsion of complying to theconditions laid down by increased international
finances, or pressure from international bodies andgrassroots NGOs, may not be sustainable in the longrun. As such the distance between having effect on thepolicies and having effect in actions is long; impositionof concepts could make it more difficult to traverse that
distance.

Darwinism and Humans- K. K. Verma, Ph.D.
Retd. Professor of Zoology, HIG 1/327,
Housing Board Colony, Borsi, Durg – 491001, India.
Email: kk.sheel@gmail.com
thRecently, in August 2008 we have celebrated 150
anniversary of publication of the Darwinian Principle of
Natural Selection. 2009 is the year for celebrating theth
200 birth anniversary of Charles Darwin. Darwinism isfor the life system on the Earth. It has relevance to53

Hoffman, B. Simplified Models of the Relationship between
Health and Disease. Theoretical Medicine and Bioethics
2005; 26: 369.

Eubios Journal of Asian and International Bioethics 19 (July 2009)human problems as well. In this communication aneffort is being made to make out this relevance tohuman civilization.
Sociobiology
Application of Darwinism to the organization andbehaviour of social species, including the humans, isreferred to as Sociobiology. Sometimes it is also called
Social Darwinism. Sociobiology, when dealing withhuman problems and affairs, has to answer twoquestions, often asked, viz.
(1)
Whether humankind is still evolving?
(2)
What are human races, and if there is any
basis for racial prejudices?
Whether humankind is still evolving?
By evolution we generally mean speciation, i.e.
formation of new species. In that meaning humans are
not evolving. During the past 150,000 years, no
speciation has taken place; Homo sapiens has
continued as a single species. The following two factors
have been mainly responsible for no further speciation,viz.
(1) Human technology,(2) Human‟s restlessly migratory habit.
Human technology allows us to invade different
environments without evolving any bodily adaptations.
Our technology allows us to live successfully in desert
areas as well as in polar regions or tropical forests
without undergoing any organic change in himself.
Humans have been migratory since their very
beginning. Soon after their origin in East Africa, morethan 80,000years back, they moved out of Africa to theMiddle East, and thence to the rest of the world.
Thousands of years ago, when the modern means oftransport were not available, Buddhism, after its Indian
origin, could reach China and Japan. Islam after its
foundation in the Middle East, spread to South East
Asia, including Malaya and Indonesia. Christianity, also
having its origin in the Middle East, swept throughEurope and even reached the New World. Because ofsuch migratory human tendency, allopatric populations
were never formed, and as per the Natural Selection
Theory, allopatry, among populations of a species, isnecessary for further speciation.
In humans intraspecific evolutionary changes do
occur. A good example of such evolutionary fluctuations
is in Remmert‟s book on Ecology (1980): “It is a regularfeature of the leafing out of woods in spring that certain
individual trees are ahead of the main group and others
are far behind. In favourable years without late night
frosts, the leaders are genetically at an advantage,
because they have the opportunity for greater
production. In years with late frosts they are in dangerof producing nothing at all, for their buds and leaves are
irreversibly damaged. The extreme individuals also
represent genetic reservoirs upon which the species
draws in adjusting to long term changes in climate. As
the growing season shortens or lengthens overcenturies, the population can respond without requiringa single (new) mutation.”.
A number of examples of such intraspecificevolutionary fluctuations among humans may be cited.

125

Verma and Saxena (2000) have mentioned thefollowing example: “In 1960s the Time magazine
conducted a survey of I.Q. among children born in auniversity campus, and noted that there was literally aburst of I.Q.. Several children were having I.Q. close tothat of Newton. But this did not result in formation of asuperintelligent human species, as the population in theuniversity campus was not isolated from the rest of the
US population.”.
Some factors dampen such intraspecific evolutionarychanges among humans. They include:
1.
Egalitarianism, i.e. equal rights for all.
2.
A fine and detailed distribution of labour in ahuman society, as a result almost every individual isable to find a suitable niche to serve and survive.
3.
Medical help. For example, a child withproclivity to develop phenylketonuria, if this genetic
tendency is detected early, may be kept on a diet freefrom the amino acid phenylalanine, and, therefore will
not suffer from the disease. A myopic person may beprescribed suitable glasses for his spectacle, and will
do well in the society.
Because of such factors a lot of variation has
accumulated in the human populations. Homo sapiens,
and their domestic animals and cultivated plants
present much more variability than any other species.
Applying Darwin‟s Natural Selection concept tohumans is a very complex task, and this had been in away foreseen by Darwin, who, in his book “Descent ofMan”, published in 1871, said, “It must not be forgottenthat although a high standard of morality gives but aslight advantage to each individual man and hischildren over other men of the same tribe…….an
increase in the number of well-endowed men and an
advancement in the standard of morality will certainly
give an immense advantage to one tribe over another.”.
Taking cue from the above opinion of Darwin, Wilson
and Wilson (2007) have formulated a hypothesis about
evolution among humans. They say that evolutionarychanges in humankind are multilayered. Such changes
occur both at the individual level as well as at the grouplevel. The hypothesis further says that in a group or asociety there are some individualist members and some
altruistic ones. An individualist considers only his
individual gains and not the social needs. He may takeeven to tortuous ways for personal benefit and ignore
the social ethics. He may well provide his family andafford costly education for his children, who will inherit
the traits from their parents, and theirs will be aprosperous family. Thus this family will be positively
selected at the family level, but will contribute little to oreven harm the social structure. An altruist willconcentrate on social needs, will keep in view the lawsof the land and the religious ethics, but may do notmuch for his family. In this family there will be, incomparative terms, a negative selection at the familylevel, but at the group or social level evolution theirs will
be a positive contribution and selection. Thus bothindividualists and altruists have to face a “trade off”. If ina society altruists dominate, this society will do better
and will be more progressive than another society, inwhich individualists have dominance. A society with the

126

Eubios Journal of Asian and International Bioethics 19 (July 2009)

former constitution will be positively selected at thesociety/group level.
In the preceding paragraph inheritance by children in
the family has been mentioned. It may be kept in viewthat among humans inheritance is not only genetic but
also cultural, because of a long post-natal association
with parents and the rest of the family, and an extra
long period of psychological immaturity.
The hypothesis by Wilson and Wilson (loc. cit.) has
been well supported by several computer generated
models considering all the relevant factors.
Altruism is a need for a functional and healthy society
not only among humans, but also among social insects.
A number of bees, ants and wasps have in theirworkers‟ sting barbs, curved towards their body. When
the workers, defending the colony, sting the attacker,
the shaft of the sting cannot be pulled out from the fleshof the attacker, and, therefore, through autotomy, it isleft there. The worker after the autotomy dies. The
defending workers of a number of ant and termite
species rupture their abdomens to release a sticky fluid
to entangle the attacker. Tofilski et al. (2008) havedescribed a regular and extreme case of altruism in a
Brazilian ant species. At dusk some workers of thisspecies close the mouth of their subterranean nest by
kicking the loose earth, which has been arranged neatly
in a mound near the mouth, when opening of the nest
mouth is done in the morning. During the closure anumber of workers take part, but, when the mouth isnearly closed, some get into the nest, and a few remain
outside. The latter get killed during night. All this has
been carefully recorded by videography by the authors.
After a long discussion on their hypothesis Wilson andWilson (loc. cit.) put their inference in a „nut shell‟ in thefollowing words: “Selfishness beats altruism withingroups. Altruistic groups beat selfish groups. Everythingelse is commentary.”.
About human races and racial prejudices
Often we talk of races in humans. But „race‟ has no
taxonomic recognition. Several authors have used theterm „race‟ in place of the taxonomically recognizedterm „subspecies‟. Mayr and Ashlock (1991) havepointed out that geographical subspecies be named
only when they differ “taxonomically, that is, by
sufficient diagnostic morphological characters”, and thatthe breeding ranges of the two subspecies of the same
species do not overlap. Geographically varying humanpopulations cannot be regarded as subspecies,
because we cannot point out taxonomically significant
and consistent differences among them, and also
because their distributional/breeding areas broadly
overlap. Oliviera and Ferreira (2004) have correctly
pointed out that the racial concept is “imprecise” and“subjective”. They have also said that through“extensive genetic studies of several humanpopulations from different continents……it was verified
that the human diversity was higher inside the “racial”
or geographic groups than among them”.
In view of all this the human populations in different
geographical areas be taken only as geographic
variants, and we should shed our „racial‟ prejudices.

References
Darwin, C., 1871. The Descent of Man, and Selection
in Relation to Sex, vol. I & II., Appleton, New York.
Mayr, E., and Ashlock, P.D., 1991. Principles of
Systematic Zoology. McGraw-Hill Inc., New York.
Oliviera, S.F., and Ferreira, L.B., 2004. Biologicalviews of the inexistence of human races. EJAIB 14(2):59 – 61.
Remmert, H., 1980. Ecology. Springer-Verlag, Berlin,
Heidelberg, New York.
Tofilski, A., Couvillon, M.J., Evison, S.E.E., Helantera,
H., Robinson, E.J.H., and Ratnicks, F.L.W., 2008.
Preemptive defensive self-sacrifice by ant workers. The
American Naturalist, 172(5) (Published online; doi:
10.1086/591688).
Verma, K.K., 2008. Darwin-Wallace Saga: Ethics inresearch. EJAIB 18(4): 105 – 106.
Verma, K.K., and Saxena, R., 2000. Man in Biological
Perspective. Himanshu Publications, Udaipur, New
Delhi.
Wilson, D.S., and Wilson, E.O., 2007. Rethinking thetheoretical foundation of Sociobiology. The Quarterly
Review of Biology, 82(4): 327 – 348.

Asian Bioethics Association (ABA)<www.eubios.info/ABA.htm>

Ethics of Energy Technologies in Asiaand the Pacific (EETAP) Project,
http://www.unescobkk.org/rushsap/energyethics/
Please send comments and suggestions to:
Dr. Darryl Macer: rushsap(at)unescobkk.org

News in Bioethics & Biotechnology
http://eubios.info/NBB.htm
International Bioethics Education ProjectNews<http://groups.yahoo.com/group/Bioethicseducation/>)

UNESCO Asia-Pacific School of Ethics
http://www.unescobkk.org/index.php?id=apse

Conferences
For a list of some ethics meetings in Asia and Pacific:
http://www.unescobkk.org/index.php?id=current_and_fu
ture_events
Third Joint UNESCO-Kumamoto University Bioethics
Roundtable: What is Medical?, 12-13 December, 2009,
Kumamoto, Japan. Contact: Prof. T. Takahashi, Kumamoto
University, Japan. Email: ttaka@kumamoto-u.ac.jp
Eleventh Asian Bioethics Conference (ABC11), and theFifth UNESCO Asia-Pacific School of Ethics Bioethics
Roundtable, 31 July – 2 August, 2010, Singapore. (Inconjunction with the Tenth International Congress of
Bioethics, 27-31 July 2010).

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