Eubios Journal of Asian andInternational Bioethics
EJAIB Vol 16 (2) March 2006 ISSN 1173-2571
Copyright ©2006 Eubios Ethics Institute (All rights reserved, for commercial reproductions).
31 Colwyn Street, Christchurch 8005, New Zealand
c/o Darryl Macer, RUSHSAP, UNESCO Bangkok, 920 Sukhumvit Rd, Prakanong, Bangkok 10110, THAILAND

Eubios Ethics Institute World Wide Web: www2.unescobkk.org.org/eubios/index.htm
http://www.unescobkk.org/index.php?id=41
Official Journal of the Asian Bioethics Association (ABA)

Contents

Editorial: Bioethics across the Region
page

Editorial: Bioethics across the Region29
It is Time we addressed Intellectual Property Rights
Issues in Genomics Research
30- Chamundeeswari Kuppuswamy
Women’s Issues
33- V. Balambal
The Participation of Cognitively Impaired Elderly
in Mental Health Research
39- Emmanuel C. Gorospe
Comparison of attitudes towards euthanasia among
elderly people in New Zealand and Japan45- Dena Hsin-Chen Hsin and Darryl Macer
Considerations about Termination of Pregnancy inPortugal: Seven Answers to Seven Questions
52- M. Cristina R. Pinto and Dina M. M. A. Silva Gomes
From Human Rights to Patient Rights
55- Gokce, A.N., Başağaoğlu, İ., Üvey, D.
News in Bioethics & Biotechnology
59
ABA Membership, IAB Genetics Network,
62
Conferences
63
Ordering Information
64
Send papers to the editor in electronic form if possible.
Please use reference style used in News section, do not
use automatic footnotes or endnotes. Papers are peer
reviewed. The papers do not represent the views of Eubios
Ethics Institute, which upholds the principles of freedom of
expression.
Editorial address: Prof. Darryl Macer
RUSHSAP, UNESCO Bangkok,
920 Sukhumvit Rd, Prakanong,
Bangkok 10110, THAILAND
Fax: Int+66-2-664-3772
Email: d.macer@unescobkk.org

Deadline for the May 2006 issue is 30 April, 2006.

- Darryl Macer, Ph.D.
UNESCO Bangkok, Thailand
This issue of the journal includes six papers, and a
return to the News section. The News section includes
papers from a range of ethics journals but omits thescientific journals and medical journals that have been
useful sources of News in the past issues. Nowadays
search engines for these journals provide easy accessto articles on many themes. There will be mention ofsome noteworthy articles in these types of journals in
the future, but readers’ comments are invited.
In the past few months a number of UNESCO
meetings on bioethics have been organized in the
Asia and Pacific region, which has allowed me tomeet with many readers, and also to receive feedback
on how to develop bioethics in the region more
effectively with network partners. There will befurther meetings in more countries, and please
monitor the RUSHSAP website for forthcoming
events. Future issues will also include meeting reports
from some of these events, including: CBECUNESCO Joint Conference and Workshop on
Bioethics Education, 21-22 January, 2006, Karachi,
Pakistan; International Bioethics Workshops, c.24-27
January, Bangalore, Vellore, Chennai, India; Second
UNESCO Bangkok Workshop on Ethics Partnerships
in Asia and the Pacific, 7-9 February, 2006, Bangkok,
Thailand. There were also conferences in New
Zealand and Sri Lanka (forthcoming), and teacher
training in Thailand. Please see some conference
announcements in the Conference section here also.
Please monitor the websites which are set to
expand and develop to offer more links to regional
activities, resources, teaching programs, and events.
News is welcome so that we can share informationand network better.

30

Eubios Journal of Asian and International Bioethics 16 (March 2006)

It is Time we addressedIntellectual Property Rights
Issues in Genomics Research
Chamundeeswari Kuppuswamy
Researcher, Sheffield Institute of Biotechnological
Law and Ethics
University of Sheffield, UK
Email: K.Chamundeeswari@sheffield.ac.uk
Intellectual Property Rights is the latest currencyof the globalised world. As more and moremanufacturing units and services are moving out
into the third world and developing economies, theindustrialised world is holding on tight tointellectual property rights. As R.A. Mashelkar putsit, ‘Intellectual property will no longer be seen as a
distinct or self-contained domain, but rather as animportant and effective policy instrument relevant
to a wide range of socio-economic, technologicaland political concerns.’ 1 The World Trade
Organisation (WTO) and its cohort organisations
like the World Intellectual Property Organisation(WIPO) are now working towards harmonisation of
intellectual property rights rules across the globe.
They are urging nations where such systems do notexist to put in place an IP regime and where they doexist they are urging states to strengthen
enforcement. For countries like India, which arepresently experiencing a boom in the economy andenormous goodwill in the international community,
such harmonisation of intellectual property rules areboth an opportunity and a threat. On the positiveside, India has a massive potential to intervene inthis harmonisation and raise concerns that are
relevant to its economic growth and future, which it
shares with many other countries in the developingworld. India has a lot to benefit from a robust andeffective intellectual property regime, especially its
cultural industries. India and other countries should
regularly participate and contribute to the debate on
intellectual property rights in the international,
regional and domestic arenas, be it about genomics
research or about the protection of biodiversity. The
contribution of academics in this area is especiallylacking and it is time academics in India launch across disciplinary debate on Intellectual property
rights issues. It is important that all countries of the1

Protecting Intellectual Property, R.A. Mashelkar,
http://www.indiaseminar.com/2005/547/547%20r.a.%20mashelkar.htm

world have their say in this area of law, which has
so far been the preserve of industrialised nations.
An understanding of the role of this peculiar
category of property rights in society is essential inorder to be able to effectively debate the pros ofcons of this system. There are two main aims to an
IP regime, anywhere in the world. They are 1. To
encourage invention by making incentives forinvention 2. Derive benefit for the society fromsuch invention. Any IP regime should have at its
heart the furthering of these two aims. Danger liesin promoting one of these aims over the other, evenmore so when the inventors are favoured.
Historically speaking, the progress of societies
through the infusion of new ideas and inventions
was the first and foremost aim of an IP system. The
grant of exclusive rights to inventors, which was
designed to act as an incentive to get people to start
thinking and inventing was only the mechanism
through which society could derive benefits foritself. This has really worked in societies. Given
that all conditions are equal, anybody canpotentially be an inventor and utilise the IP system
to his or her benefit. The United States is a case inexample where its citizens have derived enormous
benefits from the IP system and at the same time
the society in general has benefited enormously too.
Japan is another such example. However, as the IP
system has grown and reached maturity in many ofthese countries, we are beginning to observe thedark side of the system. A good example is theMickey Mouse case in the US. The Sonny Bono
Copyright Term Extension Act passed by the US in
1998 extended copyright terms by another 20 years.
This Act was nicknamed ‘The Mickey Mouse
Protection Act’ following the hard lobbying by
Disney to get the Act passed through. Mickey
Mouse’s copyright was about to expire in 2003 andtherefore they stood to gain from an extension ofterm in copyrights. Copyrights on other characterslike Pluto, Goofy and Donald Duck were to expire a
few years later. Under this new legislation, an
author's copyright would last until seventy years
after his death, while copyrights for works ofcorporate authorship would last 75 to 95 years.
Also no additional works made in 1923 or after
were still copyrighted in 1998, will enter the publicdomain until 2019. In 1999, the CTEA waschallenged on the grounds that it was
unconstitutional. The case went as far as the US
Supreme Court but did not succeed.

Eubios Journal of Asian and International Bioethics 16 (March 2006)
Critics of the Supreme Court decision havecalled it a ‘tragic mistake’2 that the court chose tointerpret the constitution in a way that it
undermined the importance of the public domain
for the promotion and progress of the useful arts.
The behind-the-scene scene of the Mickey Mouseprotection Act is not very dissimilar to what
happened behind the scene in the negotiations of
WIPO. Susan Sell argues that TRIPS resulted fromlobbying by twelve powerful CEOs of
multinational corporations who wished to mouldinternational law to protect their markets. 3
Recounting the Chilean experience of redrafting
their patent laws following pressure from the US
Pharmaceutical Manufacturers Association, Sellquestions – Where did this power come from?
How did this come to pass? 4 The Intellectual
Property Committee consisting of eleven CEOs of
multinational companies5 was formed in the 1980s.
They presented a proposal, in conjunction withother corporations from around the world to the
GATT secretariat; this led to the drafting of TRIPS
and subsequently to the beginning of a global IP
regime. The industry has demonstrated its power tomake international law by ‘identifying a trade
problem, devising a solution and reducing it to a
concrete proposal to be sold to governments’ 6 .
Intellectual property laws do not seem to be rooted
in democracy but seem more to be the outcome ofarm twisting by the corporate conglomerate that areable to hold peoples and government at ransom
because of their ability to research into and provide
much needed goods. James Boyle talks of the genepatenting and other appropriation of rights relating
to software and the information highway as starving
off the intellectual public domains. He puts forward
the thesis that we are in the Second Enclosure
Movement. He draws parallels between the present
IP situation and the English Enclosure Movement,
which he considers to have been the first Enclosure
Movement. The English Enclosure was a process offencing off of common land and turning it into2

Opposing
Copyright
Extension,
http://homepages.law.asu.edu/~dkarjala/OpposingCopyright
Extension/
3
Private Power, Public Law: The Globalisation of Intellectual
Property Rights, Series: Cambridge Studies in International
Relations (No.88), Susan K. Sell
4
Introduction, Susan Sell
5
Bristol-Myers, CBS, Dupont, General Electric, General
Motors, Hewlett-Packard, IBM, Johnson & Johnson, Merck,
Monsanto and Pfizer
6
Introduction, Susan sell

31

private property, by those who had access to power
and the law7, thus creating the landed gentry.
One needs to consider this in conjunction withother developments such as the recent case in South
Africa where the Government of South Africa wastaken to court by the pharmaceutical industry
association for passing a law enabling import or
local manufacture of generic drugs, which theyargued was infringing their IP rights. The South
African government took such a step in order toaddress the growing incidence of HIV/AIDS in the
country. The NGO Treatment Action Group
intervened and made submissions in the court andargued for the right to health and dignity and statedthat the law did not violate the rights of thepharmaceutical companies and that this was an
essential step to address the health needs of thecitizens of South Africa. A sustained campaign andinternational publicity to this issue ensured that thepharmaceutical companies withdrew their challenge
to the law.
Closer to home is the fate of our own IP system.
What have we done with our patent system? The IP
system is often referred to as being imperialist. It isquite literally true in the Indian scenario. Our first
IP law was enacted in 1856 and soon after
independence a committee was formed to look into
the functioning of the patent system. At that time,the drug prices in India were amongst the highest in
the world. The new Patent Act was put in place in
1970. The impact of this new legislation was very
telling. The drug prices fell to one of the lowest in
the world and other countries from Africa andSouth America began to buy from us. The healthneeds of swathes of people were taken care of ataffordable prices. The point I would like to stresshere is that there was a long and elaborate debate on
the type of IP system that would suit our country
before the 1970 Patent Act and that is the need of
the hour today. Since the 1st of January 2005, the
new Patent regime, which substantially changes theprevailing scenario, came into existence. There aremany criticisms to the new regime ranging from theIndian government having sold out to transnational
corporations (TNCs) to serious concerns about its
utility to the society.
Genomics is power - the power of knowledge. It
is cutting edge technology and symbolises thepower of humanity to get closer to the secrets of life
itself. It might be that India, as a spiritual and7

Enclosing the Genome: What the Squabbles over Genetic
Patents Could Teach Us, James Boyle, creative
commons.org, page 21

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Eubios Journal of Asian and International Bioethics 16 (March 2006)

cultural entity very different from the West has
little interest in unveiling these secrets of life, but
India is not a stranger to power in the international
community and we are actively courting it. We
have held our own in the nuclear arena, we haveplayed it very well in nuclear politics and it is now
beginning to pay off. It is time to do the same in theintellectual property rights area. Genomics might
not be a thriving industry in India but the pressing
questions in genomics regulation is of great interest
to the Indian economy and its people. It is
important because of the direct and indirect impact
Genomics research will have on the health of its
people. It is important because of the power
dimension to intellectual property rights that makes
it so glamorous in today's economy. The IPquestions in genomics are the following –1. There are many genomics companies whose only
assets are a few patents on gene sequences. They
can license that out and keep making money. How
does this serve the purpose of fostering
innovation?
2. There are patents being granted on genesequences, which serve no useful function exceptthat they are research tools. One of the criteria for
granting patents is that they should be useful forsociety. By granting patents on research tools, are
we putting too many road blocks on the research
path such that people are being put off from doing
research which will provide valuable healthbenefits?
3. Since investors recoup their investment fromproducts that they possess the rights for, they will
not research into products for which there is nomarket. Do infectious diseases fall into thatcategory? Should we make the IP incentives lessattractive?
4. Should genes be patented? Are they naturally
occurring or are they man made inventions?
5. Genomics needs capital, it is expensive. How are
we going to incentivise research into genomics, if
we do not guarantee IP rights to investors andresearchers?
The Universal Declaration on Bioethics andHuman Rights provides a very good opportunity for
India to intervene and contribute to the IP debatesin genomics research. The International Bioethics
Committee of UNESCO, which was responsible forthe drafting of this declaration is a multinational
forum, with plenty of opportunity for debate andthere exists an instrument, which acts as a template
to base these discussions and eventually movetowards a treaty on this subject. The IBC is a groupof 36 experts in the field of medicine, law, ethics,
sociology, politics etc appointed by the Director
General of UNESCO to consider impartiallyvarious bioethical issues. Currently there is an
Indian IBC member – Professor Prakash Tandon,
Neurosurgeon at the All India Institute of Medical
Sciences and Chairman of the Indian National
Bioethics Committee. India is also currently amember of the Inter Governmental Bioethics
Committee, which meets every two years to review
the work of the IBC and is composed of member
states of the UNESCO. The Inter-agency committee
on bioethics, which was set up in 2003 has taken up
the issue of IP.
Speaking at the twelfth session of the IBC in
Tokyo in December 2005, Justice Michael Kirby,
one of the leading figures in international bioethics
and member of the IBC drew attention to what
could be done to further the aims of the
Declaration. He laid particular emphasis on two
articles of the Declaration and submitted that theseshould be brought to the attention of the world's
statesmen. They are Article 14 dealing with social
responsibility and health and Article 17 dealing
with the protection of the environment, thebiosphere and biodiversity. He called forintergovernmental and industry co-operation in
addressing issues of intellectual property, the risksof transgenesis, the bioethics of poverty, feminist
perspectives on bioethics and other issues. I endorse
this broad programme and would like to add that agrass-root level debate and a ground swell of
discussions on these issues in academic institutionsin India and other developing countries will provide
balanced, non-prejudiced views on these issues andenhance the profile of academics too. The current
series of UNESCO-Eubios Ethics Instituteworkshops in Bangalore, Vellore and Madras on the
Universal Declaration furnishes an initial model forsuch debates and discussions. The next step would
be document these initiatives through articles inscholarly and lay journals and to use the media tospread the message more widely to the generalpublic, who do profess at least a passing interest in
this subject. Discussions in the regional language
and through alternative means such a dance, music,
drama and Katha Kalashepams would be excellent
vehicles of popular appeal which will enable us to
cut through the elitist debate and include other morerustic points of view on the ethics of genomics
research.
It is time Indian academics and academic
institutions play a greater role in the formulation ofEubios Journal of Asian and International Bioethics 16 (March 2006)
policy. After all education is the source of all ideas,
which in turn is the basis of our society. Who else
better than academics, to address these pressing
issues?

Women’s Issues- V. Balambal. M.A.B.T. Ph. D. FRAS (London)
Professor (Retd) of History, University of Madras
Email: drbala50@eth.net
Despite the fact we are entering in to the 21st
century, and acclaim and proclaim various
declarations and resolutions, an in-depth study on
Indian women reveals their secondary position. The
Indian Constitution and legislations, and UN and
UNESCO Declarations guarantee fundamental
Freedoms, Human Rights, Equality and Social
Justice to women. In the 33rd General Conferenceof the UNESCO adopted by acclamation on 19th
October 2005 many issues relating to Bio-Ethics
and Human Rights have been discussed in the
Universal Declaration on Bioethics and Human
Rights. While discussing various aspects of the
Declaration, I focus on women’s issues, realities
and solutions. Future needs to improve theircondition are also emphasized.
The Declaration recognises that the ethicalissues raised by the rapid advances in science andtheir technological applications should be examinedwith due respect to the dignity of the human person
and universal respect for, and observance of, humanrights and fundamental freedoms. Similarly theConstitution of India also guarantees freedom andequal rights to people belonging to all religion, sex,
sect, caste, language etc. But in real life it is notpracticed and an in depth study on the subject
yields unfavourable results. The violation of thesecodes produce negative results and in the case of
women, it is worse. It is necessary to analyse thepros and cons of the ethical issues and resolve how
best they could be made to enjoy their fundamental
freedom and Human Rights.
The term bioethics refers to the systematic,pluralistic and interdisciplinary study and resolutionof ethical issues raised by medicine, life and social
sciences as applied to human beings and theirrelationship with the biosphere, including issues
related to the availability of scientific andtechnological developments and their applications(Primary Draft Declaration on Universal Norms
on Bioethics, Article 1). A knowledge and33

application of bioethics is essential to lead acomplete life and in that process students learn tosafeguard their dignity and enjoy human rights andfundamental freedoms.
As I concentrate on Women’s Issues, it isnecessary to analyse the position of women of India
from earlier times to the present day and discuss therealities. There are inequalities inherent in the
traditional social structure based on caste,community, creed, religion, language and class withsocially accepted rights, and there are expectedroles of women which have a very significant
influence on the status of women. The directions ofsocial, economic and political changes have theirimpact on the status of women. Equality of womenis necessary as a basic condition of socio-economic
and political development of the nation. Eachsociety owes a special responsibility to women as
mothers, and house makers. Every one knows thatwomen are victims of inequalities and disabilities
which should be removed at all costs to improve thecondition of women.
Manu, the ancient lawgiver, specifies thesubordinate nature of woman all through her life.
‘In childhood, a girl should be subject to her father;in youth to her husband; and when her husband
died, to her son. A woman must be never
independent.’ Birth of the son is greatly rejoiced by
the family members. In the Vedic society, woman
was much needed for performing the religious rites
and her place was inside the house. Pollution was
attached to menstruation and child birth. Hindu
women suffered due to child marriage, polygamy,
widowhood, dowry, bride price, illiteracy,
unemployment, underemployment, inequality inwages, Sati, prostitution, divorce etc. In the case ofMuslim women, though the Holy Quran regards
both men and women as equals , in real life, women
are treated inferior to men. The practice of divorce,
purdha, polygamy etc are not favourable to women.
In the Christian society, women enjoy considerably
a good status.
“The 2005 conference is aware that humanbeings are an integral part of the biosphere, with
an important role in protecting one another andother forms of life, in particular animals.” Theword ‘Human beings’ includes both men andwomen. But the plight of women in the maledominated world is pitiable.Woman, thoughneeding protection, is the great protector. She bears
and rears children; she protects elders at home; sheis the light of the house. However strong she is inmind, she needs the protection of her counterpart.

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Eubios Journal of Asian and International Bioethics 16 (March 2006)

But in most of the families, she is exploited. It isinteresting to note that the Conference recommends
protection of all living beings and equal importanceis to be given to the protection of animals. But
what is the condition of women in the 21st century?
In fact pet animals are treated better than thewomenfolk in many places. Men may protect theirwomen with selfish attitude but in the case of
women, selflessness and sacrifice are part of theirlife and in that process they may be the losers too.
The society also expects them to be like that andattaches no special importance to them. There is no
doubt that the literacy and employment level ofwomen has increased, but their economic and social
freedom are at stake. Politically too, the percentageof women involved in active politics is very less.
The Conference has recognized that based on
the freedom of science and research, scientificand technological developments have been, andcan be, of great benefit to humankind inincreasing, inter alia, life expectancy andimproving the quality of life, and emphasizedthat such developments should always seek topromote the welfare of individuals, families,
groups or communities and humankind as awhole in the recognition of the dignity of thehuman person and universal respect for, andobservance of, human rights and fundamental
freedoms. In spite of the advancement in scienceand technology, and the improvement in women’s
education and financial status, women at large are
denied of their fundamental rights and dignity due
to the chauvinistic attitude of men-folk. The rural
women do not enjoy the fruits of scientific andtechnological developments because of ignorance
and poverty. The quality of their life remains atvery low ebbs. If individual freedom and rights arerespected, the society as a whole will improve. The
quality of life of the society depends on the qualityof life of women in that society. Ignoring women,no society could progress.
Women play different roles in a changing
society. But the traditional practice of decision
making left to men continues in many families.
Male domination could be seen not only in families
but also in village panchayats, municipalities,
corporation, legislative assemblies and parliament.
Child bearing and rearing, cooking and stitching are
identified with feminity. Whether women work in
offices, fields, factories, construction sites, mines
etc, they are expected to be home makers likeunemployed women. They are not treated on parwith men. The agricultural and masonry womenand factory workers face more ordeals due to lackof financial independence though they also earn.
The well-to-do women are spared from thedrudgery of house work because they could afford
domestic help but they are expected to run thehome and bring up the children. Working women
have to balance between official and home work.
There is problem of adjustment for them.
The Conference recognizes that health does
not depend solely on scientific and technologicalresearch developments but also on psychosocialand cultural factors. First of all, the development
in medical research does not reach the poor andthey do not seek any remedy for their ailments due
to poverty and ignorance. Rich can afford evencostly treatment for their sickness. But it is sad tonote that many women of India- rich or poor, urban
or rural- are psychologically put out and feelsocially backward because the way in which they
are treated in the family and in the work spot is notsatisfactory. Their mental health is affected becauseof various social and cultural factors. Theirsecondary position affects them psychologically.
Most of them have no right over their earnings andhave no say in decision making too. This social
disability makes them weaker still. Hence it isnecessary to recognize them for what they are andkeep them in good humour so that theirproductivity will improve and they can participate
more actively.
The Declaration specifies that a person’s
identity includes biological, psychological, social,
cultural and spiritual dimensions. Though theword ‘person’ means woman too, she is not viewed
in different dimensions. Though biologically she istreated as a woman, her psychological aspect, social
status, spiritual identity are not given any prime
attention in the male dominated world. She isidentified as someone’s daughter, wife or mother.
Even if a woman is well employed and settled, if
she is married to a man employed in different place,either she has to resign, or go on leave or get hertransfer to her husband’s place. Similarly, she may
be a good singer or dancer, but the decision of her
husband whether she could continue her music ordance is final. Most of the women lose their identity
or get new identity because of marital status. The
negative elements in it are to be avoided. In manyfamilies, though she is the breadwinner, she is not
given due recognition. Her likes and dislikes are no
matter for people at home. She is psychologicallyaffected due to various reasons. In many families
women lose their identities. This situation should

Eubios Journal of Asian and International Bioethics 16 (March 2006)
change, and woman should be allowed to have her
identity based on her biological, psychological,
social, cultural and spiritual dimensions.
The UNESCO conference has recognized thatan important way to evaluate social realities andachieve equity is to pay attention to the positionof women. The progress of any country or society
could be evaluated on the progress made by
women. But an analysis of existing social realities
reveals the pathetic position of women in thesociety and it is not possible for women to haveequal ranking with men in many spheres. The social
evils continue to exist, though regulations havebeen passed to abolish the same. There is no needfor sympathy for women, but they must be given
equality, freedom and rights. They should be given
education and employment and financial
independence. They should be treated as humanbeings.
One of the aims of the Declaration is topromote respect for human dignity and protect
human rights, by ensuring respect for the life of
human beings, and fundamental freedoms,
consistent with international human rights law(Declaration, Article 2,c). The framers of IndianConstitution have worked out with good intentions
to promote the cause of women and if theprovisions are followed with real spirit, women folk
would definitely benefit. It is necessary to respect
the Fundamental Rights stated in the Constitutionof India as they suit the Indian conditions. But inreality, various pressure groups work against theprovisions ensuring equality, and damage thedignity of womenfolk in India. The Human Rights
which are to be protected and enjoyed are at crossroads. The portrayal of women in advertisements,
cinema and television is not of good taste. When
women are unable to enjoy their rights and theirdignity is not safeguarded, there is no chance toensure them respect, freedom and dignity
The Declaration aims at safeguarding andpromoting the interests of the present and future
generations (ibid .g) Though it sounds well andthere is some improvement in the status of women
due to education and employment, a thorough study
reveals that it is not easy to safeguard and promote
the interests of women. Women face opposition,
discouragement and non-cooperation from family
members if it is home and from colleagues andsuperiors, if office. Women are offended andaffected in various ways. Though there are chancesof getting help from the State, it cannot do any
possible help if the atrocities are not reported to it

35

on time. If women of future generation realize thepredicaments in women’s issues, and improve theirstandard of life with education and employment andgather strength and courage to face opposition, their
future will be bright.
Humandignity,humanrightsandfundamental freedoms are to be fully respected
and the interests and welfare of the individual
should have priority over the sole interest ofscience or society (Article 3). But it is sad to notethat the interest of the people who have money andmuscle power has become primary than the average
ones. In the case of women, it is still worse. The
relationship between earning capacity and status
and autonomy within the family for the women
depends to a great extent on the status of her
earning activity. Since manual labour has a low
status in our society, women labourers, unskilled
and menial workers do not enjoy good status . They
struggle for existence as they work for the whole
day in various capacities with no honour anddignity. They are exploited by their superiors,
especially men at the workspot. They do not evenknow the meaning of human rights and dignity.
Their welfare and interests do not find any place inthe male dominated world. She suffers with thedrudgery of daily cores, drunkard husband, weak
and unhealthy children and malnutrition. Her
ailments are not properly treated and she has notime to think about the same. In the case of elderly
poor women, the treatment is worse. She is an
unwanted burden and in many families, they arethrown out and they are picked up by organizations
like Vishranthi (a home for the Aged). In suchsituations, how could they think of welfare,interests, dignity and fundamental freedom?
Perhaps in the long run, if the interests, dignity,
freedom and welfare of the individuals, especiallywomen are respected , the society as a whole will
benefit.
The autonomy of persons to make decisions,while taking responsibility for those decisions
and respecting the autonomy of others, is to berespected (Article 5). From earlier times, thedecision making, not only in the family but in state
too, is the privilege of men. Education andemployment are denied to many women so thatthey totally depend on menfolk. The practice ofdowry and bride price lowered their status. Till
recently, women had no right over the property of
their parents or husbands which belittled theirposition. Though some are educated and employed,
many do not have any say over their own earnings.

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Eubios Journal of Asian and International Bioethics 16 (March 2006)

Hence with few exceptions, women are deprived of
their rights in decision making. Though after theirmarriage they are expected to respect the in-laws intheir new environment, there is no hard and fastrules to stress their importance in the family. It isone- way traffic in many families.
The Declaration states that any preventive,
diagnostic and therapeutic medical intervention
is only to be carried out with the prior, free andinformed consent of the person concerned, basedon adequate information (Article 6). In spite ofthis article and the Indian Constitution guaranteeing
fundamental rights, many women feel that they
have no right over their own body, child orproperty. She becomes a victim of not only
circumstances but also of the whims and fancies ofher husband and in-laws. Though the law sanctions
her the right over her own body and her right todeny sex to her husband if she is unwilling, most of
the husbands feel that it is the duty of the wife toyield to their call. As far as abortion and infanticide
are concerned, the mother’s instinct in her neverallows her to abort the girl child even if she alreadyhas girl babies. In the Indian society where female
infanticide is illegally practiced by the family
members themselves, women especially of thepoorer section, are at a loss to execute their will.
Preventive measures are not taught to them andthey are the ultimate sufferers. Their consent isnever asked at any stage. Of course in modern
times, there is great awareness of family planningand the educated couples discuss things well inadvance before they take any decision, but it is of
low percentage. Even in their cases, women have tobow down to the interests of men folk. Otherwise,
their life will be miserable. Even though for thetime being, women give consent willingly or
unwillingly for preventive actions like abortion,
they should have the right to change their opinion
next time. They cannot be forced to by any one inthis aspect.
The privacy of the persons concerned and theconfidentiality of their personal information
should be respected. To the greatest extent
possible, such information should not be used ordisclosed for purposes other than those forwhich it was collected or consented to, consistentwithinternationallaw,
inparticularinternational human rights law (Article 9). Thisis relevant not only in medical research andtreatment but in regular day-to –day life. Though
the medical reports are to be kept confidentially,various factors hinder the process and we hear somemedical personnel falling a prey to some forces
knowingly or unknowingly. It affects the patient not
only physically but to a greater extent
psychologically too.
In offices and home too women face ordeals andare exploited by their opponents who take thedelicate and secret issues connected with women. In
this connection, though some may feel it is out ofcontext, I would like to highlight the role of womenin Mega serials in almost all channels. The
exposition of women in many serials is nauseating
and damages the image and dignity of women.
They enter into the privacy of women and exploit
them with revengeful attitude. This is to becondemned. Whether it is medical report or apersonal report, it should not be disclosed to anyone
without the consent of the person concerned.
The fundamental equality of all human beingsin dignity and rights is to be respected so thatthey are treated justly and equitably (Article 10).
Similar to this the Indian Constitution stressequality and social justice. But what is happening inreal life is different. The caste, creed, religious,class, sex and language differences play havoc inpromoting equality and justice. The ‘ Sons of thesoil’ theory put an end to the slogan that ‘Kashmirto Kanyakumari, we are one’. The Tamil proverbthat ‘poor cannot get justice’ proves to be correct as
the money power clubbed with muscle power could
purchase justice. In this process women are also
involved and victimized. Subramania Bharati, theNational poet of India dreams about the liberationof women and equality in Indian society. He feelsthat men and women are like two eyes and if one
eye is blinded we will not get complete vision. By
this he means that a society which harms women
will not prosper. Women should be given goodeducation like men so that they could progress.
No individual or group should bediscriminated against or stigmatized on any
grounds, in violation of human dignity, humanrights and fundamental freedoms (Article 11). It
is very easy to say that no one shall be subjected todiscrimination based on any ground intended toinfringe or having the effect of infringing thehuman dignity,human rights or fundamental
freedoms of an individual,nor shall such grounds beused to stigmatize on an individual, a family,agroup or a community. . But in actual practice wefind that there is discrimination. Even at home,at alllevels, there is difference in treatment between themale and female children. The parents give priority
to male children . If they could afford education toEubios Journal of Asian and International Bioethics 16 (March 2006)
one child, the preference is to the son as they feelthat he would take care of them at old age and thedaughter would go to different family. But in reality
we see that most of the parents are taken better careby their daughters than sons. In the poorer sections,
it is shocking to note that son is fed and educatedbetter than the daughter. In most of the families inthe below poverty line, the daughter has to take careof the younger siblings as both the parents go to
work.
Similarly, at the below poverty line, theproblems faced by tribal and Schedule caste womenare horrible. Though there are Non-Governmental
Organisations to take up their cause, solution or
justice is not got easily. The gender discrimination
is deep rooted in India and it is necessary to findways of eradicating it completely.
It is sickening to note the condition of a raped
girl in a society. There is lot of discrimination intreating the raped girl, though a man or men are thereal culprits. Stigma is attached mainly to the girl.
Though the society is not happy with the incident,
men escape from serious punishment and stigma.
The attitude of the society should change. In thevillages, the village assembly tries to solve theproblem by marrying the raped girl to the rapist as
they feel they have given a future to the girl. But
there are girls who feel instead of marrying theaccused, it is better to penalize him and they takethe matter to the court of law. To decide that way,
they should be strong willed, as they have to facenasty questions in the court and the insults from thesociety. Till last the society attaches some stigma toher. All these happen because she is a woman. Man
escapes from these realities. Many women’sorganizations take up the issues of affected womenand encourage them to lead a courageous life.
In the case of divorcees also, more stigma is
attached to women. A man becomes an eligible
bachelor for the second marriage after the divorce
but women face many ordeals. The stigma is
attached to her for ever. Similarly, the single
women and single mothers face lot of problems andtheir dignity is affected by the gossipers or negative
people. The children of the divorcees and single
mothers are looked upon with coloured glasses by
the society. There should be an end to it.
The importance of cultural diversity andpluralism should be given due regard. However,such considerations are not to be invoked toinfringe upon human dignity, human rights andfundamental freedoms, nor upon the principles
set out in this Declaration, nor to limit their37

scope (Article 12). While making any decision orfollowing any practice, it is necessary to keep inmind the cultural backgrounds, school of thought,
value systems, traditions, religious and spiritualbeliefs and other relevant features of society. But
these considerations should not affect humandignity, human rights and fundamental freedom. In
course of time, there are changes in the society due
to various factors. Education and financial
independence have improved the status of some
women. The western culture has made great impact
on the youth. But in that process, they should notlose their identity or dignity. Co-education andemployment have brought men and women closer.
Inter caste marriages and inter dining have becomecommon. But at the same time, there are people
who attach stigma to all these things and the mostaffected are women. . There should be proper andbetter understanding between two genders. Any
relationship or friendship should not cause damage
to human dignity, human rights and fundamental
freedom.
Article 14 speaks of Social Responsibility and
Health. Every citizen has the fundamental rightwhich guarantees access to quality health care andessential medicines, including for reproductive
health and child health.. It is the duty of thegovernment to look into the needs of the people.
Health of the girl child and women are highly
neglected areas. It is necessary to create awarenessamong people about the need for health andhygiene. Due to ignorance and carelessness many
girl children have been affected by polio in ourcountry and their future is bleak. Similarly many
women are affected by AIDS due to no fault of
their own but face humiliation and insults. Postmaternity care is totally absent in the poorer society
and nutritious food is unknown to the pregnant
women.
Women and children should have adequate
nutrition and water. Water has become a scarcecommodity and it is to be purchased both by therich and poor. In many places, getting water is thetoughest task for women folk. Drinking water posesa great problem and water pollution causes
diseases. It is duty of the government to provide
good and adequate water facilities to the people.
To lead a healthy life, there should be clean
environment. People who live in places where there
is pollution of different kinds face health problems.
This is to be rectified not only by the government
but by the people themselves. Reduction of poverty
and illiteracy may contribute to better health

38

Eubios Journal of Asian and International Bioethics 16 (March 2006)

conditions of the people especially women who are
the more responsible people of the society.
Application of these ethical principles is notdifficult. It needs proper understanding of the theme
and correct application. The Declaration
recommends different Ethics Committees (Article19) which will be independent, multidisciplinary
and pluralist in character to assess the relevant
ethical, legal, scientific and social issues related toresearch projects involving human beings; toprovide advice on ethical problems in clinicalsettings and to foster debate, education and publicawareness of, and engagement in, bioethics. At thisjuncture I would like to stress the importance ofMoral Instruction classes to the students from theelementary school level. In this class the concernedteacher teaches to the students many morals
through stories and the children are impressed withthe positive aspects of life and are warned against
negative aspects. It is the age in which they could
be well shaped for dos and don’ts. Whatever be thereligion, the students should be taught tounderstand the moral stories which would enable
them to know the realities of life. The children
should be taught to know the significance of healthand hygiene in day-to-day life.
The state has to play an important role in solving
women’s issues. It should insist and extend freeeducation for girl children promoting nutritious
food, free medical checkup and advice to them.
Training programmes could be arranged for womento create awareness on ethical issues. Bioethics
education should be a compulsory part of thecurriculum.
Itisnecessarytofostermultidisciplinary and pluralistic dialogue aboutbioethical issues between scientists, healthprofessionals, lawyers, philosophers, ethicists,
theologians and all other intellectual, religious andprofessional groups concerned, policy makers nongovernmental organizations representatives of civilsociety, the persons concerned and society as awhole. Definitely women, though a minority, will
be members of these groups or organizations.
Though regulations have been enacted to end theatrocities(sati,
widowhood,
illiteracy,
unemployment, prostitution, eve teasing, rape etc)
against women, they exist in one form or other inthe society. Government should be strict in dealing
with people who harm women and the severity ofthe punishment should be an eye opener to theculprits. The ultimate point is that men should
respect and honour women and there should bemutual understanding and caring which would help

to solve women’s issues and promote their welfare,safeguarding their dignity, human rights andfundamental freedoms.
References
Primary Sources:
Constitution of India
Final Report on the UNESCO RUSHSAP Regional
Meeting for the Ethics of Science and Technology in
the Asia Pacific, 5-7 Nov. 2003, Bangkok
International Declaration on Human Genetic Data, 16
October,2003, UNESCO.
Preliminary Draft Declaration on Universal Norms on
Bioethics, 28 January, 2005, Paris.
Status of Women in India, ICSSR, New Delhi,
REPRINT, 1998
The First Bangkok Workshop on Ethics Partnerships for
Asia- Pacific Region, Bangkok, (Background Material
prepared by RUSHSAP, UNESCO Bangkok)
Universal Declaration on Bioethics and Human Rights,
UNESCO, 19, October, 2005.
Published works
Altekar, A.S. The position of women in Hindu
Civilization from Prehistoric Times to the Present Day,
Second Edition, Delhi, 1978.
Balambal, V. Studies in the History of the Sangam Age,
Delhi, 1998.
Basham, A.L., The Wonder That Was India, London,
1954.
Desai, P.B. Jainism in South India, Sholapur, 1957
Billington, Fraces:
Women in India, Second
Edition, Delhi, 1987.
Datta, V.N: Sati, A Historical, Social and PhilosophicalEnquiry into the Hindu Rite of Widow Burning, New
Delni, 1988.
Gupta, A.R. Women in Hindu Society, Second Edition,
New Delhi, 1982.
Kamala Mankokar, Women in India, New Delhi, 1975.
Kane, P.V. History of Dharma Sastras, Vols, I-V,
Bombay, 1940.
Krishnaswamy. S. Glimpses of Women in India, New
Delhi,1983.
Majumdar, R.C. (Ed) History and life of the Indian
People, Vols. I-V, Bombay, 1951-60.
Mukerji Kumar Santosh, Prostitution in India, Delhi,
1986.
Pillay, K.K. A Social History of the Tamils, Second
Edition, Madras,1975
Radhakrishnan, S. Religion and Society, London, 1947.
Ram Ahuja, Rights of Women, A Feminist Perspective,
New Delhi,1992.
Subbamma, Malladi, Women - Tradition and Culture,
New Delhi, 1985.
Tara Ali Baig(Ed) Women of India, Reprint, and New
Delhi, 1990.
Vijayalakshmi, R. Women of Tamilnadu (Tamil),
Chennai, 1997.

Eubios Journal of Asian and International Bioethics 16 (March 2006)

The Participation of Cognitively
Impaired Elderly in Mental
Health Research- Emmanuel C. Gorospe, MD
School of Public Health, University of Nevada Las
Vegas and Multicultural Coalition in End-of-Life
Issues, Nevada Center for Ethics & Health Policy(Southern Nevada Branch) University of Nevada
Reno
Address for Correspondence:
The Children’s Nephrology Clinic
3201 S. Maryland Parkway, Suite 606,
Las Vegas, Nevada 89109 USA
Email: GorospeE@unlv.nevada.edu
Abstract
Cognitive impairment threatens every
elderly person as well as society in view of theworld’s aging population. Unfortunately, the very
nature of these mental illnesses also hinders
promising research due to the subjects’ inability toconsent. It is the intent of this paper to argue theempirical need and ethical acceptability of
involving cognitively impaired elderly in mental
health research as long as proper regulatory
safeguards are in place. The need for advancedirectives in research, recognition of the importanceof surrogate decision-makers as well as the need toseek participants’ assent will be re-examined inlight of the special situation of the cognitively
impaired elderly.
Introduction
The abilities to comprehend, to articulate
choices, and to logically elaborate one’s decisions
are cognitive capacities that enable persons to
decide autonomously. Losing the capacity to decide
can be an unfortunate consequence of a medical,
neurologic or psychiatric condition. These
conditions more often than not occur in old age.
Stroke, major depression, Alzheimer’s disease,dementia and other neurodegenerative disorders
may bring about this process of cognitive
impairment. Unfortunately, current treatment
options for most of these conditions are still far
from being effective. Hence, such situation calls forfurther research. However, the very condition thatmakes these neuropsychiatric problems devastating
also hampers research. The loss of proper cognition
may hinder the elderly’s capacity to decide and to
express informed consent for research participation.

39

In the U.S. alone, the elderly (persons aged
65 and above) presently comprise 13% of the total
population. It is estimated that they will continually
increase up to 20% by the year 2030 (US Admin.
on Aging, 2005). Parallel with the growth of theaged population, the number of elderly withcognitive impairment is also expected to increase.
The prevalence of Alzheimer’s disease is estimatedat 1.5% among persons age 65 years old. Thisprevalence increases every four years, reaching
30% by the time the elderly reach the age of 80(Gorelick, 2004). In 2000, there were 49,600 deaths
attributed to Alzheimer’s disease, making it the 7thleading cause of death among the U.S. elderly(CDC, 2005). In addition to these high morbidity
and mortality rates, the estimated health care cost of
cognitive impairment for the U.S. will be around
US$58 Billion annually (Max, 1993).
The development of cognitive impairment in
the elderly does not automatically render anindividual to be incompetent to consent. However,many of the elderly with advanced mental illnesses
such as Alzheimer’s disease, vascular dementia,
schizophrenia and major depression may not beable to give competent consent either for medicalcare or research participation (Grisso &Appelbaum, 1995). This places our society on thequandary of whether to include the vulnerable andcognitively impaired elderly in research activities inlight of their growing number, cost of care andpoorly treated mental health problems. Corollary tothis, how do we protect the autonomy of thecognitively impaired elderly? Should we allow their
appointed
surrogate
decision-makers
toautomatically carry over their substituted judgment
for research activities? Will assent from the elderly
be necessary at all times?
Development of Research Ethics for the
Cognitively Impaired
The Nuremberg code was the firstinternational document that galvanized the need for
informed consent among human participants. It is
however silent about the conduct of research among
those who can not consent because of cognitive
impairment. To interpret literally, the Nuremberg
code forbids research without the consent ofsubjects. Even more, it does not open any
possibility for surrogate consent in research(Bonnie, 1997).
The Helsinki Declaration was the firstinternational guideline to give way to the possibilityof including incompetent subjects in research by40

Eubios Journal of Asian and International Bioethics 16 (March 2006)

assuring favorable risk-benefit considerations(World Medical Association, 1964). Following theNuremberg Code and the Helsinki Declaration,
several initiatives have come up with their own
research ethics guidelines concerning subjects who
can not give informed consent. Currently, there areseveral international institutions that place
safeguards in clinical research concerning the
cognitively impaired. In the U.S., the National
Bioethics Advisory Commission came up with a1998 report, Research Involving Persons with
Mental Disorders that may affect Decision-making
Capacity. Other guidelines include the Canadian
Tri-Council,
theCouncilofEurope’srecommendations, and several branches of the U.S.
National Institutes of Health with their own
recommendations (Wendler & Prasad, 2001).
The issue of informed consent is central tothe debate regarding the participation of cognitively
impaired elderly. Rhodes (2005) argues that thecentrality of informed consent has hindered the
conduct of research and has set the current U.S.
research policies in the wrong direction. Levine(2005) in a commentary about the Rhodes’ article,
Rethinking Research Ethics, also concedes that the
informed consent process consumes more than its
appropriate allocation in reviews conducted by U.S.
institutional review boards. According to Rhodes(2005), this overemphasis on informed consent hasbrought a culture of over-protection among thevulnerable subjects. Fins (2003) echoes the samecontention that the current protectionist attitude has
had the unintended consequence of imperiling
advances in the neurosciences that could benefit thevery population that research ethics has sought toprotect.
Quandary for the Cognitively Impaired Elderly
There are contradicting reports as to thecurrent status of research among the cognitively
impaired elderly. On the contrary, some clinicians
and investigators perceive the lack of clear
regulatory protection in the U.S. (Kim, et al. 2004).
Some fear that conservative institutional review
boards may inappropriately censor research withcognitively impaired elderly as reflected by theviews of Rhodes (2005) and Hougham (2005).
The U.S. Code of Federal Regulations
approves the process of informed consent by alegally authorized representative (Appelbaum,2002). Similar institutions also suggest the same
solutionofutilizing
legallyauthorized
representatives. These include the National

Bioethics Advisory Commission, the state of
Maryland’s Attorney General’s office, the New
York State Office of Mental Health, the Canadian
Tri-Council and the Council of Europe (Wendler &Prasad, 2001). Another notable declaration would
be the position paper of the American College ofPhysicians (1989) which states that:
Consent to research may be taken in advance fromthe subject and designate a proxy to supervise thesubject’s participation. In cases where there is noadvance or proxy designated, a legally authorized
surrogate should act as the decisionmaker…surrogates may consent to research if
participation is in the incompetent person’s bestinterest (pp. 844-845)
However, these guidelines stand as mere
recommendations if not given legislative support.
In addition, many of the guidelines have conflicting
suggestions on the process of seeking informed
consent for the enrollment and continued
participation of cognitively impaired participants.
Kim et al. (2004), believe that many U.S.
researchers are still confused and in need of clearer
regulatory guidelines. They cited the example ofappointing legally authorized representatives which
rest mostly on individual U.S. state laws, whichmore often than not insufficiently address the issue.
As a result, many researchers and stakeholders may
not be aware of the applicable laws in their own
state.
Even family members who have beencustomarily considered as surrogate roles intreatment have been questioned by U.S. courts intheir attempt to act as surrogate decision-makers inresearch. In New York, an intermediate appellate
court declared that, “No incompetent adult or minor
could be entered into a research protocol that
contained any element that has no therapeutic
benefit…and presented more than minimal risk,such as a lumbar puncture or a PET scan”(Appelbaum, 2002, p.122). Similarly, Maryland’s
Supreme Court held the same ruling, “a parent,
appropriate relative, or other applicable surrogate
cannot consent to the participation of a child orother person under legal disability…in which there
is any risk of injury or damage to the health of thesubject” (Appelbaum, 2002, p.122). These two
court decisions, if interpreted conservatively, may
potentially block the enrollment and participation of
cognitively impaired subjects since almost allclinical trials whether therapeutic or nontherapeutic carry risks to their participants.
Presently, many of these issues are individuallyEubios Journal of Asian and International Bioethics 16 (March 2006)
handled by institutional review boards based on
their knowledge of existing guidelines and ethicalsensitivity (Bonnie, 1997). Kim et al., (2004) reportthat in a recent multicenter survey of the
Alzheimer’s disease Cooperative Study, 14% of
study sites reported restriction from their local
institutional review board to accept consent by
proxy. Rosamond Rhodes (2005) contends that weare overprotecting our cognitively impaired to theirdetriment. She notes:
Current policies…presume that all those who can
be classified as “vulnerable” should bepaternalistically protected from researchers
irrespective of whether the individuals in thosegroups consider their participation as a benefit,
whether or not they want to be protected, andregardless of the fact that some, most, or possibly
all of the individuals in the so-called “vulnerable”
group have the capacity to consent to research
participation (p. 12)
Redirecting Our Ethics Perspective
The problem of the cognitively impaired
elderly in research revolves around the issue ofautonomy. Informed consent is a process by which
we document our recognition for our subjects’human dignity. It is through this recognition bywhich we regard our subjects as persons who arecapable of free will and are entitled to the liberty ofchoosing of what they desire and deem to be in
their best interest.
Mental health research involving the
cognitively impaired elderly is a balancing act thatconsiders the deepest values of research ethics-that is autonomy, beneficence, and nonmaleficence.
This author agrees with Rhodes (2005) that theproper social agenda of clinical research is toadvance the knowledge of society for the
betterment of its members. In the process ofachieving such benefit, subjects regardless of theirdecisional competency should not be treated merely
as means even to such noble ends. To avoid
unethical conduct, subjects should be allowed toexercise their autonomy in a manner that isreflective of their personal values, cognizant andconsiderate to whatever physical, medical or mental
condition they are in.
More than respecting autonomy is theconcept of acknowledging the rights of individuals
to participate in research whether this emanatesfrom an altruistic initiative or from vested personal
interests. More often than not, this respect for therights of individuals to participate in research is

41

ignored (Reynolds, 2002). This is especially true
among the elderly who are suffering frompsychiatric, neurologic, or medical conditions that
may weaken their capacity to assert theirpreferences. It is tempting to view the elderly with
our ageist prejudice and to belittle their capacity toundergo such noble endeavors of contributing toscience and humanity.
However, the process of acquiring consent
must also be congruent with the values and wishesof the elderly participants. This may be viewed intheir values inventory, living will, and advancedirectives or through their sincere surrogates who
could attest to the elderly’s personal values anddisposition towards research. Attempts to preclude
their participation based merely on their age,
medical, or mental status devalue their dignity andautonomy. On the other hand, haphazard enrollment
may easily imperil the autonomy of such vulnerable
individuals given their weakness in articulating
their choices and disagreements. It is also the standof this paper to allow greater surrogate decision
making role for research. The arguments for eachpoint will follow in the succeeding paragraphs.
Arguments against Research Participation
Since the 1960’s guidelines have beenformulated for the purpose of permitting the elderly
in research either through advance directives, proxydecision-makers,
orlegallyappointed
representatives. This is however easy to say, yetchallenging to implement. What is currently being
debated in the U.S. is the process of allowing
surrogate decision-makers to consent for thecognitively impaired elderly in research. There iscurrently no consensus as to what extent surrogatesshould be allowed to exercise their proxy decisionmaking roles in research.
For one, an advance directive even in the
U.S. is already a sensitive issue to tackle with. Only
less than a quarter of Americans complete theiradvance directives for medical care (Emanuel,
Barry, & Stoeckle, 1991). All the more, it will bedifficult to ask for advance directives for research.
Another problem is the dilemma of
weighingrisk-benefit
assessment
intheparticipation of the cognitively impaired elderly.
Many debates now surround the topic of classifying
research into either therapeutic or non-therapeutic.
There seems to be a persistent hesitation to include
cognitively impaired elderly in non-therapeutic
research since it does not provide any direct benefit
to the participating subjects.

42

Eubios Journal of Asian and International Bioethics 16 (March 2006)

Arguments for Research Participation
Many of the conditions seen in the elderly
are difficult to find among the younger age groups.
The aged brain has a lot to reveal in terms of
preventing, diagnosing and managing mental
disorders. By automatically prohibiting theparticipation of cognitively impaired elderly, we are
depriving science the chance to serve the elderly aswell as to provide prevention and treatment for the
benefit of society. It is not suggested that we take alax stance on this issue. The elderly are vulnerable
thereby necessitating added but appropriate
protection without blocking research or trampling
upon the autonomy of those who wish to contributeto the noble agenda of rigorous scientific inquiry.
Impaired cognition even among the aged
does not necessarily translate to decisional
incapacity (Rhodes, 2005; Appelbaum, 2002). To
prematurely conclude that the cognitively impaired
elderly can not meet an acceptable degree of
autonomy would be a moral deficit due toprejudice. It is suggested that society could be best
served if investigators and research policy-makers
keep an open mind towards potential research
participants. Only after sufficient evaluation shouldelderly participants be labeled as incompetent(Beauchamp, 2005).
Sachs et al. (1994), report that many persons
with dementia are still capable of participating in
health care discussions even if they fall short of thestrict regulatory guidelines for informed consent. A
systematic review of literature was conducted by
Kim, Karlawish, and Caine (2002) covering 32
relevant studies which indicated that many persons
with dementia are indeed capable of decisionmaking either for medical care or research
participation. The general view towards mental
health research in the U.S. is especially positive
among those who have experienced the burden ofmental health problems among their loved ones. In
a survey covering 246 individuals with family
history of Alzheimer’s disease, 95% of respondents
agreed to participate in clinical trials for dementia
even after they have lost their capacity to consent(Wendler et al., 2002).
More than just preoccupying ourselves withthe process of informed consent, the ethicalacceptability of a research protocol involving the
cognitively impaired elderly would have to consider
the other pertinent facets of research ethics. Respect
for subjects does not end with informed consent.
Respect for subjects should encompass: respect for

subjects’ privacy, tolerance to allow subjects tochange decisions, assurance of subjects’ well-being,
and recognition of subjects’ contribution toresearch. Informed consent is necessary in almost
all cases, but rarely is it sufficient alone to assure
ethical acceptability (Emanuel et al., 2000). The
focus should go beyond informed consent. Policymakers and investigators must learn to embrace amore holistic approach to ethical research such as
culturalsensitivity,
acceptablerisk-benefit
assessments and humane care of participants.
Non-participationinnon-therapeutic
research for the reason that it doesn’t provide any
direct benefit to the elderly participant is a very
selfish attitude towards the social benefits ofresearch. Although no one should be compelled tojoin against his will, society must cultivate a cultureof altruism especially among those in special
medical or mental conditions with whomhumankind may learn about their special situationand possibility derive knowledge to benefit othermembers of society.
Proxy
Decision-Makingfor
Cognitively
Impaired Elderly
In the care of the cognitively impaired
elderly, health care professionals have customarily
turned to families for support and surrogate
decision-making roles. This process of proxyconsent has always been hampered by social,
cultural and legal problems. Yet, it is also a
promising frontier for mental health researchers to
explore in order to gain greater research
opportunities among the elderly in advance stagesof cognitive impairment. There are many arguments
for and against such practice. Arguments
establishing the legitimacy and moral acceptabilityof family members as surrogate decision-makers
emanate from our respect of the family as a basicsocial unit. In matters that affect its members, thefamily should be regarded as a responsible decision
maker (Emanuel & Emanuel, 1992). This isespecially true in Asian cultures where families arecollective decision-makers as represented by theirelders. By the nature of their intimate relationshipto the patient, families are the best judges of thepatient’s values and attitude towards medical careor research participation. Among the vulnerable
groups, the elderly have peculiar characteristics
different from legally incompetent minors. Older
people have lived long lives, had families, worked,
and in one way or the other have developed andexpressed their values in life from which family

Eubios Journal of Asian and International Bioethics 16 (March 2006)
proxy decision-makers could reflect upon for
directions. Hence, traditional surrogate decisionmakers for medical care may be entertained as
possible proxies even in research.
However, we can not deny instances when
the fabric of family ties turns rough andundependable. Family members may have conflictsof interests in the care of their elderly members(Emanuel & Emanuel, 1992). It could be possiblethat some families may take advantage of research
as a means to abandon their elderly patient. They
may also consider research as a means to lighten
their care-giving load or to gain incentives for theirenrollment. Hence, the frail and cognitively
impaired elderly may be used merely as a means forthe family’s end goals. However, the family is still
the best trusted decision-maker. A survey byWendler et al. (2002) suggest that 88% of
individuals would still allow their families to enroll
them in research even in the absence of an advancedirective.
Need for Assent
Cognitive impairment in the elderly such as
Alzheimer’s disease afflicts patients in a spectrumof severity, giving a varied continuum of decisional
capacity. Legally, some may fall short of thestandards of competence, but may still exhibit
certain degrees of appreciation and expression of
choice in the things that happen around them. Thisis called as the capacity to assent. The Helsinki
Declaration (1964) states that, “when a subject
deemed legally incompetent…is able to assent todecisions about participation in research, theinvestigator must obtain that assent in addition to
the consent of the legally authorized representative”(p.357).
In spite of the Helsinki Declaration, there is
still disagreement among existing guidelines on theneed to seek assent from incompetent participants.
Namely, the New York, Maryland, and theCanadian Tri-Council guidelines require assent forenrollment, while others do not. With regards todissent, there is consensus among existing
guidelines advocating withdrawal of incompetentsubjects who express dissent except for the
Canadian Tri-Council which would permit
continued participation if the protocol offers direct
potential benefit to the dissenting subject (Wendler& Prasad, 2001). There is a pressing need for aconsensus to establish guidelines with a unified
stance regarding the need for assent. It is theopinion of this author that the need for assent must43

not be a blanket prerequisite. It should be arequirement based on the mental status of thepotential subject. If the elderly participant is able togive assent, then it should be sought. The ability toassent entails appreciation of feelings, sensations
and outside environment. With assent, comes also
the capacity to feel frustration and distress whichshould be heeded by investigators and proxydecision-makers. Dissent should also be taken in amanner that analyzes the current mental conditionof the subject. Investigators should verify if thedissenting behavior is a manifestation of thesubject’s remaining cognition which desires towithdraw from research or merely an unintelligible
act brought about by the deteriorating mental
illness.
Conclusion
The cognitively impaired elderly deservemuch attention. They are a vulnerable group whose
mental health problems are very much still in theprocess of experimentation and discovery. It is
ethically permissible to allow their participation inmental health research for the reasons discussed
above. They should not be barred from participationon the sole basis of their vulnerable status. To
automatically prohibit research based on such
categorical status would be neglectful of theelderly’s remaining autonomy and dignity. Tohinder a scientific and valid research protocol
merely on the basis of the subjects’ inability toconsent would impede medical advances that would
have benefited both the elderly participant andsociety in general. The elderly should be allowed tocontribute and receive whatever advances mental
health research has to offer. Their participation
should be documented in their advance directives,
through surrogate decision-makers who should beprotective of the elderly’s best interest andcognizant of the elderly’s attitude towards research.
Appointment of proxies should be as rigorous asthat of surrogates for medical treatment or end-oflife decisions. The cognitively impaired elderly
whenever possible should be allowed to express
assent or dissent in addition to surrogate consent toprevent any distress or undue harm. Research
involving the cognitively impaired elderly should
be reviewed not only in terms of informed consent
but also in consideration of all the facets of research
ethics.

44

Eubios Journal of Asian and International Bioethics 16 (March 2006)

Recommendations
It is recommended that stakeholders ingeriatric mental health research must encourage
clinicians, researchers, patients and families to planin advance during the initial stages of cognitive
impairment. Recruitment in this anticipative
manner would encourage discussions on researchamong those who are still decisionally-capable andinterested in contributing to the advances ingeriatric mental health. This dialogue regarding
future research consent should be culturallysensitive, and must be shared with the probablesurrogate decision-maker as to facilitate better
understanding and cooperation. This is a processthat may bring about better and more valid
informed consents that are truly representative ofelderly participants’ understanding and desire toparticipate in research.
References
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Cognitively impaired subjects. Annals
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Appelbaum, P. (2002). Involving decisionally impaired
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Beauchamp, T. (2005).How not to rethink research
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Bonnie, R. (1997). Research with cognitively impaired
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Dunn, L., Lindamer, L., Palmer, B., Golshan, S.,
Schneiderman, L., & Jeste, D. (2002). Improving
understanding of research consent in middle-aged andelderly patients with psychotic disorders. American
Journal of Psychiatry, 10 (2), 142-150.
Emanuel, E., & Emanuel, L., Proxy decision making forincompetent patients. Journal of theAmerican
Medical Association, 267 (15), 2067-2071.
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England Journal of Medicine, 324, 889-895.
Evans D.A., Funkenstein. H., & Albert. M.S., (1989).
Prevalence of Alzheimer’s disease in a community
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reported. Journal of the American Medical
Association, 262, 2551-2556.

Fins, J., Constructing an ethical stereotaxy for severe
brain injury: Balancing risks, benefits and access.
Nature Reviews Neuroscience, 4(4), 323-7.
Grisso, T., & Appelbaum, P.S.(1995).The Macarthur
treatment competence study III: Abilitiesof patients to consent to psychiatric and medical
treatments. Law & Human Behavior,19, 1449-1474.
Gorelick, P. B. (2004). Risk factors for vasculardementia and Alzheimer disease. Stroke, 35(11 Suppl1), 2620-2622.
Hougham, G. (2005). Waste not, want not: Cognitive
Impairment should not preclude research participation.
The American Journal of Bioethics, 5 (1), 36-37.
Kim, S., Appelbaum, P., Jeste, D., & Olin, J., (2004).
Proxy and surrogate consent in geriatricneuropsychiatricresearch:Updateandrecommendations. The American Journal of
Psychiatry, 161(5), 797-806.
Kim, S., Karlawish, J., & Caine, E., (2002). Current
state of research on decision-making
competence of cognitively impaired elderly persons.
American Journal of Geriatric Psychiatry, 10 (2), 151165.
Levine, R. (2005).Reflections on “rethinking research
ethics”. The American Journal of Bioethics, 5(1), 1-3.
Macklin R.(2005). Some questionable premises about
research ethics. The American Journal of Bioethics, 5(1), 29-31.
Max, W., (1993). The economic impact of Alzheimer’s
disease. Neurology, 43, 6-10.
Sachs, G., Stocking C., Stern, R., Cox, M., Hougham,
G., & Sachs, R., Ethical aspects of dementia research:
Informed consent and proxy consent. ClinicalResearch 42(3), 403-12.
Reynolds, C., (2002).Advancing research in decisionmaking capacity. American Journal of Geriatric
Psychiatry, 10 (2),117-119.
Rhodes, R. (2005).Rethinking research ethics. The
American Journal of Bioethics, 5(1), 7-28.
Wendler, D., Martinez, R., Fairclough, D., Sutherland,T., & Emanuel, E., (2002) Views of potential subjects
toward proposed regulations for clinical research withadults unable to consent. The American Journal of
Psychiatry, 159 (4), 585-591.
Wendler, D., & Prasad, K., (2001) Core safeguards forclinical research with adults who are unable toconsent. Annals of Internal Medicine, 135 (7), 514523.
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Helsinki. In T. Beauchamp & L. Walters(Eds.)
Contemporary issues in bioethics 6th ed. (pp. 355-357).
Belmont, CA: Wadsworth.

Eubios Journal of Asian and International Bioethics 16 (March 2006)

Comparison of attitudes
towards euthanasia among
elderly people in New Zealandand Japan- Dena Hsin-Chen Hsin, M.S.N., Ph.D.
China Medical University, Taichung, Taiwan;
Email: hchsin@hotmail.com- Darryl Macer, Ph.D.
RUSHSAP, UNESCO Bangkok, 920 Sukhumwit
Road, Prakanong, Bangkok Thailand 10110
Email: d.macer@unescobkk.org
Abstract
The purpose of this study is to explore theattitudes towards euthanasia among elderly people
in New Zealand and Japan and make comparisons.
In-depth interviews were conducted with 25 elderly
persons in New Zealand and 25 in Japan separately.
All interviews were transcribed verbatim, content
analysis method was conducted to examine the key
ideas that people had regarding euthanasia. The
results showed that 64% Japanese and 24% New
Zealand respondents approved of euthanasia. While
Japanese hold an idealistic thinking in facing the
ethical issues of euthanasia, their concept of
euthanasia is mixed with the concept of natural
death, that we cannot predict their real judgementof mercy-killing. While seniors of New Zealand are
more practical and the availability of effective pain
management or palliative care service is the mainconcern in their end-of-life. I then predict that if themodern medicine can guarantee a pain-free end-oflife, then euthanasia should never be an option for
the elderly to accomplish the wish of dying with
dignity.
1. Introduction
The ethics of euthanasia is one of the mostpopular subjects of debate within the health care
profession as well as in the public from long time
ago until now. The act of euthanasia is today
understood as termination of life on the request of apatient and should be under the assistance of thedoctor (physician-assisted suicide). Thus, theattitudes of subject who is supposed to give (doctor)
and the subject who suppose to take (patient) werethus the focus of most research interest. Few
studies, however, have explored the attitude among
the population who are supposed to receive
euthanasia. Elderly people are assumed to be less45

remote to their end-of-life, gathering the opinions
about euthanasia in their ordinary and healthy days
can provide reliable information which may
enhance a dialogue on end life issues and make thepublic improve their maturity to consider
euthanasia thoroughly.
Japan and New Zealand are island nations
located in the Pacific Ocean. All of them have auniversal health care system, long life expectancy
and relatively advanced medical care. Moreover, inthese relative rich societies, the three leading causesof death among the elderly are the same; that iscancer, cerebral-vascular disease and heart disease.
However, there are cultural differences. We
predicted that the attitude towards their end-of-life
among seniors may be derived from their culturalvalues. In addition there may be religious factors,
the religious affiliations are predominantly
Christian in New Zealand and include
Confucianism, Shinto and Buddhism in Japan. In
addition, there is also an apparent difference ofliving style that senior people of New Zealandenjoy much a relaxed life; while the characteristicof loyalty and obedience has made most seniors ofJapan live precisely. Those may be factors that
influence their attitudes toward euthanasia.
Euthanasia is illegal in both Japan and New
Zealand, however many studies in both countries
have showed that increased medication to alleviate
symptoms which may also cause premature death isacceptable among medical staff as well as the
public (Akabayashi, 2002; Mitchell, 2004; Mitchell& Owens, 2004; Macer,2003). In Japan “death with
dignity” has been a popular idea, while those whohave attempted legislative reform have focused on
forgoing life-sustaining treatment and theimplementation of a living will, not active
euthanasia or physician assist suicide (Akabayashi,
2002). At the same time euthanasia has moved intoa practical dilemma in Japan when medical doctors
have been involved in famous court cases of mercy
killing in 1996 and 1995 (Hoshino, 1993, , 1996).
In New Zealand, till recently, several attempts havebeen made to liberalized laws prohibiting
euthanasia. However, according to the surveys(Mitchell & Owens, 2004; Mitchell & Owens,
2003); physician-assisted death in New Zealand isoccurring. Essentially, both societies haven’t
reached a great commitment on the issue of
euthanasia except that the establishment of an open
dialogue on the subject should be developed.

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Eubios Journal of Asian and International Bioethics 16 (March 2006)

2. Methodology
This study was part of a larger study of life anddeath attitudes. A descriptive design was chosenusing face-to-face, semi-structured, in-depth
interviews.
A. Participants and data collection
Interviews were conducted with 25 seniors
in New Zealand in mid-2003 and 25 seniors inJapan in late 2003. Healthy seniors aged 60 years orolder were invited as participants. In New Zealand,senior persons were enrolled through approaches ina retirement club, home visits and rest homes, with
the introduction of local persons. While in Japaneven with some introduction many recruitment
attempts were all failed, so home is the only sourceof interview cases.
Qualitative data was collected throughpersons who agreed to participate; tape recordings
were used during the one to two hour longinterviews. No one refused an audio tape recording.
B. Analysis
All interviews were transcribed verbatim, andstored in a computer as data bank. Then, content
analysis method was conducted to examine the key
ideas that people had regarding euthanasia and lifeand death questions. The analysis steps began withlistening to participants’ verbal descriptions,followed by reading and re-reading the verbatim
transcriptions or written responses. Significant
statements were then identified and extracted.
These statements were then recorded in a data
management file for ease of ordering later inprocess. All significant statements in the comments
were thus placed into categories depending on
different ideas that they contained.
Open-ended interviewing techniques, taperecordings, and verbatim transcriptions from thosetapes were used to increase the accuracy of datacollection. The transcripts were reviewed and coded
independently by two researchers drawing upon
their expertise in clinical medicine and bioethics.
The qualitative methodology, features of thedensity of data collection, and the inductive way ofanalysis were all chosen to maximize the validity ofthe motifs in order to study seniors’ attitudes
towards euthanasia.
C. Characteristics of participants
In the New Zealand group, 64% were female,
40% were aged 70-79 years, with 48% older (80-89
32%, 90-99 16%) and 12% younger. All of themwere currently living in urban areas. 52% were
widowed and 48% were currently married.
Different from the Japanese group, only one lived
with his children and spouse, 56% were living
alone (including 20% in rest home), 40% were
living only with their spouse. Most of them (80%)
had 2-4 children and 8% had more than 4 children.
When asked their religion, all but one identified
themselves as Christian.
In Japan, 64% were female too. The average ageof the persons in the Japanese sample was lower
than New Zealand. Only 44% were higher than 70,
which do not correspond to the advanced age
population of Japanese society. However, becauseof the conservative attitude towards talking withstrangers among the elderly group, many rejected
our interviews or had difficulty to talk directly
during the interviews. In Japan, 28% were widowed
or singled, 72% were currently married. There is
8% live with children alone. More than half of them
lived with their spouse and children (60%). Similar
to New Zealand, most of them (80%) had 2-4
children and none of them have more than 4children. When asked their religion, 10 identified
themselves as Buddhism only one as Shinto andeight Christians. Thus we can say there is a slightly
Christian bias in this sample. (Table 1).
3. Results
Duringthesemi-structured
interview
conversations in New Zealand and Japan, 25
seniors from each group were asked to express theiropinions about euthanasia. The main categories of
response are in Table 2.
In New Zealand, six persons (24%) approved ofeuthanasia definitely, holding a reason that humanshould not suffer so much, and life got no value insome situations that Euthanasia should be a rightthing for some cases. For example:“…calling out in pain, begging for the needle….
It’s kinder that you slip away and don’t have to go
through that. I don’t think anybody should have tosuffer like that. What’s the point?”“If life hasn’t got any value, what’s the use? When
you lose all knowledge, mentally and physically, if
it comes to that you’re not capable of feeding
yourself, of washing yourself or of looking after,
euthanasia I believe that’s right.”“Not just because I’d rather die, I mean if you’resuffering and you don’t have a way of getting out of
it…and it’s terminal…”

Eubios Journal of Asian and International Bioethics 16 (March 2006)

47

Table 1: Characteristics of the sample in New Zealand (NZ) and Japan (J)Variables
GenderItemmalefemaleSourceFamilyCommunity and park
Institution
Age
60-69
70-79
80-89
90+
Living area
Urban
Rural
Religion
Buddhism
Dao
I-Kuan Tao
Folk religion
ChristianCatholic
ShintoNone
Marriage status
SingleMarried
Widow
Living status
Alone
With spouse
With children
With children &spouse
Number of children 0
1
2-4
4+
None
Education
Primary school
background
Middle school
High school
College and above
Health satisfaction GoodNot bad
Not good
Bad or poor
Frequency to visit More than once a week
a doctor
1-4 times a month
1-12times a year
Less than once a year
Other
6
ADL scale5(Katz Basic
Activities of Daily 4
3
Living Scale)
2-0

NZ
N(25)
9
16
14
6
5
3
10
8
4
25
0
0
0
0
0
23
1
0
0
0
11
14
14
10
0
1
0
1
22
2
1
5
16
3
18
5
2
0
0
1
22
2
0
22
1
2
0
0

NZ
%
36
64
56
24
20
12
40
32
16
100
0
0
0
0
0
92
4
0
0
0
42
58
56
40
0
4
0
4
88
8
4
20
64
12
72
20
8
0
0
4
88
8
0
88
4
8
0
0

Japan
N(25)
9
16
25
0
0
14
10
0
1
25
0
10
0
0
0
8
0
1
6
2
18
5
5
3
2
15
3
1
21
0
0
0
2
14
9
13
9
3
0
0
8
4
9
4
23
0
1
1
0

J
%
36
64
100
0
0
56
40
0
4
100
0
40
0
0
0
32
0
4
24
8
72
20
20
12
8
60
12
4
84
0
0
0
8
56
36
52
36
12
0
0
32
16
36
16
92
0
4
4
0

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Eubios Journal of Asian and International Bioethics 16 (March 2006)

Table 2: Comparisons on views on euthanasia between Japan and New ZealandReasons
Seniors%
Seniors
%
NZ
Japan
25/25
25/25
N comments/ N respondents
Agree
6
24
16
64
Almost Agree, but…
Do not agree
Not sure, depends, do notknow what to do about it6
8
5“…people have something incurable and that theirhealth is suffering to the extent it would be better
they pass on. I think in quite a few cases,
euthanasia should be right.”
In addition to those six who “definitely
approved”, there were another 6 (24%) seniors who
felt that euthanasia might be a good idea, but havesome other concerns and do not agree with it ahundred percent. All of them expressed that it was aserious event and should be concerned moreconservatively. They also have sensed the
difficulties in manipulating euthanasia for human’s
death. They assert it would have to be wellcontrolled and set a strict law to avoid abuse elderlyor those who were frail. Within these six, some
expressed their doubts to help or to be helped to die
and some explained further that even if they are notopposed to it they still prefer to die naturally. For
example:"Ninety percent… I do believe in it. But I do believe
it would have to be well controlled, to stop abuse.”“I agree with it to a certain extent but there would
have to be some very strict controls, I think people
shouldn’t be made to suffer for years if they’renever going to be better. I would say 60%...,“Euthanasia is a very, very dicey subject, I mean. If
there is absolutely no cure and people are in
dreadful pain, yes, I think euthanasia is the answer.
But you’ve got to be so careful about to make itlegal, because there are very unscrupulous people
in the world….”“If there’s absolutely no hope for a person, why letthem suffer for so long…. But I’m afraid it could be
dangerous, it could be that people…how do you put
it…well its dangerous and it’s a big decision andthere are few cases that you really think people
would be better off, very few I think I’d die anatural death”“…if I was just living but I wasn’t taking part inlife, I would just like to be helped to die… I thought
I did agree, but I wouldn’t want anyone else to

24
32
20

2
7
0

8
28
0

have to die…I couldn’t ask anyone to do it for me
and I couldn’t do anybody in”
Eight of 25 (32%) expressed that they wereagainst euthanasia. Most of them held a reason thatpain can be controlled; medicine would help lots torelieve pain. According to them, euthanasia is tooviolent a way to just finish life, they preferred todie on their own and do not want any extra power
involved. Some of them regarded people’s
suffering as part of their life experience, andthought people should be responsible to their life.
One was very sure to state that what they approveof is” Natural death” to let go when there in no
quality of life, but did not approve of euthanasia.
Example comments included:“…you can relieve the pain totally but notnecessarily kill.. Euthanasia is more violent way to
do some action to just finish it.”“I think they can control your pain…I think the big
thing is, as long as your pain is controlled, it must
make a big difference to you, mustn’t it?”“You can accept death easily if you’re in pain andyou wanted to die. But I don’t think we should behelped to be out of this world. Just looked after…”“I would not like anybody to take my life I would
like to die on my own without any help.”“I think that’s part of our life experience, I’m
definitely against euthanasia. I think we should
live our life out….”“I think I lean more towards what I’ve done withthe living world saying that if there is no possibilityof having any quality of life, then stop the
medication, let nature take its course. , that’s
natural death. I don’t think I believe ineuthanasia”.
Five of these 25 seniors (20%) commented they
are not sure and are wavering to decide what to doabout it. One of the reasons is that they do not face
the situation, and they haven’t been in that situation
to experience like a lot of people. Even though they
were not against euthanasia, one of the interviewees
stated that she preferred not to put this on his childto make him in a conflict situation and thought that

Eubios Journal of Asian and International Bioethics 16 (March 2006)
it was awful to ask his family to face something
like that. They concluded that when it comes tothem they do not know what to do and this is a very
hard decision to make for everyone.
Compared to New Zealand, there are moreseniors who approved of euthanasia in Japan(64%). Most of them held a reason that it is goodfor everyone if it is impossible to get better. In themean time, they talked about other benefits likesaving national resources, releasing the burden offamilies and removing suffering. Many of themstated that having tubes connected to machines toprolong life is the most terrible thing, it is for sureworse than death. Euthanasia then would be a goodthing if only it was decided by patient him/herself.
However, many of them defined Euthanasia as tostop the medical treatments or let go the end of life.
Only one could clearly distinguish natural deathand euthanasia, he said: “I would emphasize how torelease from suffering. Natural death is nice but
somehow it is too pain, you just cannot help it but
to choose Euthanasia….”
Similar to New Zealand, in addition to thosewho “definitely approved”, there were another twocomments which agree with euthanasia in certain
conditions, but they have some other concerns likethe feeling of families and the spirit condition ofpatients. For example:“If it suffers too much, why not? To relieve is themost important. Nevertheless, my concern is how tocope with family’s doubts and emotion? We got tothink about the feeling of the families.”
Seven of 25 (28%) expressed that they do not
approve of euthanasia. None of them mentioned
about the practical reason that medicine can help a
lot to relieve pain. They focus on the sanctity of life
to say that your longevity is a destiny; life should
be ended by natural and their feeling of “killing”.
For example:“I do not feel well to hear the word Euthanasia; I
cannot stop the feeling of murder….”“I just don’t want to be killed by an injection; it isawful to think about that…No, I don’t agree…”“No, just because this is human’s longevity (hasbeen decided), …”“It is better to pass away by nature, Euthanasia isagainst natural, I don’t like it so much.”“It is no necessary to force human die in this way,human will die anyway if his time is up.”
None of the seniors we interviewed had
uncertainty towards this subject. One thing for sureis they were concerned that they do not want to be
put on the machine to prolong their end of life.

49

Euthanasia or Natural death has relieved theanxiety of it that would be accepted easily.
4. Discussion
During the sampling period that the interviews
were conducted in New Zealand, there weredebates about making euthanasia legal in New
Zealand. The private member's parliamentary bill
failed in its first reading to proceed to discussionthat could have led to legislation; however,deliberate discussions about euthanasia in the
public have made citizens improve their maturity toconsider this issue thoroughly.
Probably because of the fully discussion
through the media during the legislation period,
most of seniors we interviewed in New Zealandwere very familiar with the subject of euthanasia.
They probably cannot imagine all the details of
every possible situation of the future death,
however at least they have a brief view of the pros
and cons over euthanasia and had started to think
about what is their wish for their end of life.
Among these seniors, they said they would
have different choices between yes or no if we
asked them to vote on euthanasia, but there was not
only discrepancy in ideas but also diverse concepts
can be found over this difficult topic. Whether toapprove or not, all of them had a very positive
attitude to value human life even in the very
difficult stages towards the end of life. What they
were most concerned about was if people are in
dreadful suffering, can they come out of it? If pain
can be controlled only by medical service, that is
one solution. Thus the percentages who say yes orno among seniors is not the key point to explain
their attitude toward death. Instead, some points ofviews about euthanasia are worthy to put emphasis
on to recognize the context of seniors’ preference
for their end of life.
First, pain is the key concern, not old age ordisability. Many seniors considered euthanasia only
for the situation of terrible pain, any other situation
especially like very old age, irreversible condition
or even “lying there and waiting too long” should
not be a reason. To be in pain or not makes a big
difference, which many have set as a margin ofwhether to do or not to do euthanasia. Seniors weinterviewed, moreover, stated that they realized that
if an old man gets to be bedridden, he might get sotired and fed up with being the way he is(declining, disabled and being a burden of others),
it would be possible for him to ask for help to finish
life. While, most seniors commented that even if

50

Eubios Journal of Asian and International Bioethics 16 (March 2006)

you can accept death easily and want to die, it does
not means you should be helped to be out of theworld. “It is harmful to put your death on tosomebody else; you have to think about yourfamily.”Some of them approved of euthanasia becauseof the experience from their families. For example
one old lady said ”I heard my mother crying to diewith cancer, I hate to see that happening toanybody, so I am all for Euthanasia, if they are in
dreadful pain and want to die.” Another said “I
saw my father… and that was enough for me. He’s
only one of thousands….”
None of them complained of the situation of
their very old age and wanted to die because of oldage. They asserted that life is a kind of
responsibility, suffering and aging are part of theirlife experience; people would adjust finally, old andfrail, and died of old age naturally.
Strict control may be essential to avoid abuse
among the elderly, with either a well disciplined
medical profession and guidelines, or legal
provisions. Most people would agree that instead ofkilling the patient to relieve suffering, medicine
should made efforts to relieve those in dreadfulpain. In New Zealand most patients are able to selfadminister morphine to suit the needs for pain
control, thus pain control as part of palliative
medicine has been given a major role in treatmentof terminal illness. Even the result of national
survey in New Zealand suggests that palliative care
did not meet patients’ need and the intent to hasten
death does not seem to be a consequence of the
non-availability of palliative care (Mitchell &Owens, 2003). While this study shows theavailability of aggressive palliative care for theelderly is one determining factor for the attitudes
towards euthanasia, since those seniors who statedthey were against euthanasia were holding a reason
that pain can be controlled and medicine shouldmake the patient feel better.
“Hastening death” and “double effecteuthanasia” are welcomed and more easily to be
accepted. Regarding the violence of aggressive
euthanasia, many elderly preferred to “just give
morphine to help the dying along”. People feel ease
if an action is just under the intention to relieve thepain and not to kill. They believe it exists in
hospital and do not feel anything wrong with it, forexample one person in their idea of euthanasia said:“Hospitals are busy, and if someone is in actual
pain and helplessly dying, they can just give him alittle more morphine to help him along. I don’t
think there is anything wrong with that.”
Again, pain is an important concern thatpeople can be allowed to deal with it with allefforts; even though it might harm the biologicallife and hasten their death. For the very sick andsuffering patients, the intention to relieve pain
would always find its proper place as somethingthat most seniors approved of, to allow death rather
than intend to end life in a very struggling
condition.
According to the opinion of many seniors, we
can understand most seniors do not mind to hasten
their death because of the intention to relieve pain.
However, other than this, there were some other
opinions, for example “I would ask for food to be
stopped and drink to be stopped then let me just go
and not terminate my life” or “I would just like tobe helped to die in a certain state if I was justleaving but I wasn’t taking part in life…”etc..
Which makes us consider that the ideas “notprolonging”, “hasten death” and “to end life under
the name of mercy” can be differentiated byordinary people like the seniors interviewed here
when they were asked to make decisions for theirend of life care. Can they make up their mind
firmly and express their personal ideas well enoughso that the health profession can catch their real
intention and follow their instructions with nomisinterpretation? Can we find a way to encourageseniors to leave a reliable will during their adult life
with good mental function and guarantee that theirwishes and preference for their end of life medicine
and death management can be accomplished whentime is come?
To give mercy is not easy at all in practice.
Although most people really think there are few
cases that would be better to be helped to off theworld, but for themselves they prefer not, and feelawful to put their family in the difficult situation tohave to consider such a procedure or end. They
supposed that to ask their family member or anyone
to do that is unfair. Also, as one person stated “I
could never help a person to die, but I probably
could help myself.” Since they couldn’t ask anyone
to do it for them and couldn’t "do anybody in". The
doctor, having a professional image involved indecisions relating to human’s life and death, andthe power to prescribe drugs, could thus beregarded as the appropriate, and most available,
person to do so. It sounds reasonable as one said
she wouldn’t mind asking her doctor because she is
not related to him. Nevertheless, as a matter of fact,Eubios Journal of Asian and International Bioethics 16 (March 2006)
it is a great imposition of one person upon anotherto ask them to help terminate their life. As a doctor,
he might feel that if it is mercy to give, why restrict
its performance only to doctor? As Dr. Tan codedfrom Shakespeare’s in his article “Why I do notbelieve in Mercy-Killing”, “Mercy is twice blessed;
it bless him that give, and him that takes?”(Tan,
1996). People approve of euthanasia to be merciful
and a right thing to protect human dignity. Then
why do they protect their loved one from doing it or
facing this confused situation? There must have
many doubts about its rightness and goodness. To
be merciful is not easy and to benefit patientscannot give a full reason to perform mercy likeeuthanasia. We can see it very clearly from theopinions of seniors in New Zealand.
In general, euthanasia is accepted to be applied
only when people can speak of unbearable andhopeless suffering. Thus, the request of a dying
patient is the prerequisite to make euthanasia put inpractice. Voluntary euthanasia should exclude thepersonal emotion of depression, feeling ofworthlessness, guilty, anger and confusion.
Gathering the opinions of elderly people in theirordinary and healthy days can provide reliable
information which is the most reasonable to protect
a right to die rather than imposing a duty to die.
Compared to New Zealand, there were moreseniors who approved of euthanasia in Japan andheld a reason that it is good for everyone. The
benefits would be, for example, saving national
resources, releasing the burden of families andeliminating the suffering of the patients. Again,
many respondents stated that having tubes
connected to a machine to prolong life is the mostterrible thing, it is for sure worse than death.
However, many of them defined euthanasia as tostop the medical treatments or let go the end of life.
According to the studies, Japanese doctors wereaffirmative for life-sustaining treatment (Asai,
Fukuhara, & Lo, 1995), and tend to adhere to theprinciple of prolonging life when their patient has
not directly expressed his or her will (Akabayashi,
2002). Because of these, Japanese seniors might
have much worry being treated in a wrong way
when dying. To express their approval ofeuthanasia might be just a way to mitigate theirworry.
Different from New Zealand, there was nowavering comments or uncertain talks about
euthanasia in the Japanese group. This might
confirm that the in-depth thinking of benefit andrisk on this subject are not sufficient in seniors

51

group of Japan compared to New Zealand. As
Shinagawa (2000) said in his book of Tradition,
Ethics and Medicine in Japan, “Curiously enough,virtually almost no formal discussion has eventaken place in Japan on euthanasia, mercy killing,
death with dignity, “do not resuscitate” order andso on.” In spite that the situation is taboo to discussthese issues in Japan, the unitary concern of notencumbering another and keeping an intact dignityof elderly life might have predominated theirattitude towards euthanasia. It showed that in thismoment, Japanese society was not ready to beconcerned seriously about the necessity oflegislation on euthanasia, regardless of the fact thatJapan has the world’s longest life expectancy.
5. Conclusion
Compared to New Zealand, seniors ofJapanese hold an idealistic thinking in facing the
ethical issues of euthanasia. In the non-approving
group, none of them mentioned about the practicalreason that medicine can help a lot to relieve pain.
They focus on the imperative that “life is sanctity”
and “do not kill”. Those who approved ofeuthanasia sometimes included a dramatic thinking
towards it since the meaning of the words“Anrakushi” (euthanasia in Japanese) has inferred ameaning of “peaceful and happily death” and gave
a image that euthanasia accorded with a "perfect"
human death. The finding of the interviews is
consistent with the view point of Lock (1995) thatJapanese’s concept of euthanasia is mixed with theconcept of natural death, so it may be of the utmost
priority to differentiate between euthanasia andnatural death to the public that we can explore thereal judgement of “Mercy Killing”.
Different from Japan, seniors in New Zealand
who stated they were against euthanasia were
holding a practical reason that pain can becontrolled and medicine should make the patient
feel better. The availability of effective pain
management or palliative care service is the mainconcern for elderly in their end-of-life. If themodern medicine can guarantee a pain-free end-oflife, then euthanasia should never be an option for
the elderly to accomplish the wish of dying with
dignity. The only question left is first how seniors
can differentiate between “not prolonging” and “toend life under the name of mercy”, and then to
make up their mind firmly and express theirpersonal ideas well enough so that the healthprofession can catch their real intention and follow
their instructions with no misinterpretation?

52

Eubios Journal of Asian and International Bioethics 16 (March 2006)

6. References
Akabayashi, A. (2002). Euthanasia, assisted suicide, andcessation of life support: Japan's policy, law, and ananalysis of whistle blowing in two recent mercy killingcases. Soc Sci Med, 55(4), 517-527.
Asai, A., Fukuhara, S., & Lo, B. (1995). Attitudes ofJapanese and Japanese-American physicians towards
life-sustaining treatment. Lancet, 346(8971), 356-359.
Hoshino, K. (1993). Euthanasia: current problems inJapan. Camb Q Healthc Ethics, 2(1), 45-47.
Hoshino, K. (1996). Euthanasia in Japan: update (CQ
Vol 2, No 1) by Kazumasa Hoshino. Camb Q
Healthcare Ethics, 5(1), 144.
Lock, M. 1995. "Contesting the natural in Japan: Moraldilemmas and technologies of dying", Culture,
Medicine and Psychiatry 19:1-38.
Macer, D. R. J. “Japanese Bioethics” pp321-337 in
Peppin, J.F. et al., eds., The annuals of Bioethics
Regional Perspectives in Bioethics. Swets &Zeitlinger;
2003
Mitchell, K. (2004). Physician commitment in end oflife care--perspectives from New Zealand and theNetherlands. Soc Sci Med, 59(4), 775-785.
Mitchell, K., & Owens, G. (2004). End of life decisionmaking by New Zealand general practitioners: anational survey. N Z Med J, 117(1196), U934.
Mitchell, K., & Owens, R. G. (2003). National survey of
medical decisions at end of life made by New Zealandgeneral practitioners. Bmj, 327(7408), 202-203.
Shinagawa, S. Tradition, ethics and medicine in Japan.
Berlin: Humanitas Verlag; 2000.
Tan, S. Y. (1996). Why I do not believe in mercykilling. Hawaii Med J, 55(12), 273, 303.

Considerations about
Termination of Pregnancy inPortugal: Seven Answers toSeven Questions- M. Cristina Rosamond Pinto, M.D., PhD.
Human Genetics, University of Lisbon, Lisbon,
Portugal- Dina M. M. A. Silva Gomes, M.S.
Faculty of Sciences, University of Lisbon, Lisbon,
Portugal
Email: genetica_medica@hotmail.pt
Postal: Genética Humana, Rua Amílcar Cabral,Nº21, r/c H. 1750-018 Lisbon, Portugal

Abstract
Regarding abortion there is a great deal ofcontroversy going on in Portugal. Unlike the other
European countries, the exception being Cyprus,
Poland, Spain and Ireland abortion or voluntarytermination of pregnancy is illegal in Portugal. The
authors focus on seven questions and related
answers, which are a matter of debate at thePortuguese Parliament in the threshold of areferendum to be carried on viewing the publicpoles about such a delicate problem.
1 - What’s the Actual Juridical Regime of Abortion
In Portugal?
Abortion or voluntary termination of pregnancy
is defined by the Penal Code as crime against intrauterine life (articles 140º and 141º). The Penal
Code also states the situations when it is admissible(article 142º). The person that performs theabortion is faced with a prison penalty of 2 to 8
years (if against her will, articles 140º/nº1) or a up
to 3 years (if according to her will, article
140º/nº2). The limits of the penalty are increased in
one third when the abortion or the means utilized
result in dead or offense to the physical integrity ofthe pregnant women and when the agent is involvedin frequent practice of abortion or performs it withintention of profit (article 141º/nºs 1 and 2). The
pregnant woman that carries out an abortion ispunished with a prison penalty up to 3 years (article
141º/nº3). The people who whelp her (friends,
family or others) may be judged for complicity(article 27º). If the sentence applies a prison penalty
inferior to 6 months it is replaced by a fine or otherpenalty not affecting freedom (artº 44º). Abortion isa public crime; so the judicial procedure does nodepend on previous denunciation.
Abortion is not punished when (causes of
exclusion of illegality– article 142º) it is performed
by a physician or under his orientation, in an
official health establishment or officiallyrecognized, with the consent of the pregnant
women, in the following situations:a)
If it is the only mean to remove
danger of death or serious and irreversible lesion to
the body or to physical or mental health of thepregnant women or if the fetus in unviable – there
is no limit to time of pregnancy.
b)
If it is shown that is the best
method to avoid danger of death or serious andlasting lesion of the body or of the physical andmental health of the pregnant women and it isperformed in the first 12 weeks of pregnancy.

Eubios Journal of Asian and International Bioethics 16 (March 2006)c)
If there are strong motives tobelieve that the newborn will suffer, in an incurable
way, from serious disease or congenital
malformation (eugenic abortion) and it isperformed in the first 24 weeks of pregnancy.
d)
If the pregnancy results from
crime against freedom or sexual auto determination(for example, rape) and the termination ofpregnancy is performed in the first 16 weeks.
2 – Is Portugal Included in the Countries withMore Restrictive Legislation?
The laws concerning termination of pregnancy
are very restrictive in Cyprus, Poland, Spain,
Portugal and Ireland. In a general matter, abortionis permitted only in cases of violation,
malformations of the fetus and protection of thephysical or mental health of the woman. Ireland is
the only country in the EU (European Union) whereabortion is, in the face of law, forbidden in any
circumstance. In 1992, Ireland signed the Maastrict
Treaty and received guaranties that the restrictive
laws in abortion matters would not be affected.
Portugal does not contemplate economic and social
reasons as cause to terminate pregnancy, contrary
to the majority of other European countries and theinterpretation of the law by the medical services is
too restrictive, justifying the low number ofabortions performed under the law.
3- What are the Differences in the Application of
the Portuguese and Spanish Penal Laws?
The Spanish penal law is very similar to thePortuguese law, and was in fact based on it.
Nonetheless, the Spanish law as some more
restrictive aspects, for example, the stated periods
to eugenic abortion, 22 weeks, and to abortion insequence of rape, 12 weeks. In spite of the more
restrictive interpretation of the law by the public
services, private clinics perform the large majorityof pregnancy terminations in Spain (about 97% of
the abortions take place in private clinics). The
Spanish law does not punish the women that carryout a clandestine abortion in the cases when ispracticed by the motives permitted (by law),however the physicians, mid-wives and others arepunished. Since February 2000, Spain authorized
the utilization of the abortive pill in the publichealth services permitting the fastening ofattendance in those services. The accreditation of
the private health services to the practice ofpregnancy termination and the exigencies necessary

53(specialists, facilities, medical practices, etc.) are
predicted in the law.
4- What are the Recent International
Recommendations Concerning Abortion?
Several entities, including the UN (United
Nations Organization), the WHO (World HealthOrganization), the United Nations Fund for the
Population (UNPF, the European Parliament andthe International Association for Family Planninghave alerted to the consequences of clandestine
abortion in women’s health. CEDAW (Committeeof the Nations for the Elimination ofDiscrimination Against Women) in January 2002
recommended to Portugal:“The Committee is worried with the restrictive
abortion laws in Portugal, in particular because
clandestine abortions have serious negative impact
in the women’s health and in their well-being.” The
Committee recommends that the state member(Portugal) facilitate the national dialog about
reproductive health in women, including the
restrictive laws on abortion. It also asks theGovernment to promote the improvement of thefamily planning services, permitting the access toall women and men, including adolescents andyouth. The committee asks the state member toinclude information about deaths and/ or relateddiseases in consequence of clandestine abortion.”
The European Parliament approved, in July
2003, a resolution about rights in the matter ofsexual and reproductive health, from which weenhance: “We recommend that in order to protect
the reproductive health and the rights of women,
the voluntary termination of pregnancy should be
legal, safe and universally accessible.” Werecommend the governments of the State members
and those of the countries candidates to join, toabstain, in all circumstances, to act judiciallyagainst women that performed illegal abortions.”
5 –Are there Statistics Concerning Abortion in
Portugal ?
In Portugal, the legal termination of pregnancy
is a residual margin in the universe of pregnancy
terminations. Women continue to perform illegal
abortions in private clinics and doctor offices(sometimes in other places with no conditions, likegarages) and auto-abortion with the use of Cytotec(a medication for stomach problems). It isestimated that, in each year, about 20,000 to 40,000
clandestine abortions take place in Portugal, 5,000
women being hospitalized in consequence of54

Eubios Journal of Asian and International Bioethics 16 (March 2006)

complications and 15 dying. It is estimated that one
in every four Portuguese women did a clandestine
abortion (our population is under 10 million). In
young women between fifteen and nineteen years
old, one in 200 did an abortion and in the young
adults aged nineteen the proportion rises to 5% (onein 50). In the last six years approximately 9,000
women went to Spain to abort in private clinics.
In 2002, according to official data, 11,000
women had hospital urgencies and 5 died inconsequence of abortion. The police authorities
investigated 49 cases of abortion in 1998 and 1999
and 23 cases in 2000. In 1998/1999 eight persons
were convicted. In 2002, in a trial nationally andinternationally followed, 17 women were judged
for abortion and one was condemned.
In the decade of 84/94 the hospitals performed
716 legal abortions and received 730 cases ofcomplications of illegal abortions!! For the same
decade, 46 deaths of women victim of clandestine
abortion were reported. A study conducted in 1999
in the Portuguese district hospitals (by the
Association for the Family Planning) concluded
that the majority of the hospitals conducts less thanten voluntary terminations of pregnancy per year
and that the principal cause is the fetal
malformation or disease (65-70%). The same study
reports a low number of pregnancy terminations
related to the physical or psychological health ofthe pregnant woman (21%) showing that theinterpretation of the law is very strict, namely in thecase of psychological health. The same study also
concluded that the hospitals don’t maintainstatistics about the number of attendances inconsequence of clandestine abortions.
A paper published in 2004 (by ISEG – Superior
Institute of Economy and Management) concluded
that are still “no data about the reality of abortion in
Portugal”, “the number of clandestine abortions
remains incognito” and that “there are various
figures pointed out but the truth is that there are no
feasible studies to national level that reveal withrigor the reality of abortion in Portugal”.
6 – What are the Consequences of the Referendum
that took place in 1998?
In June 1998 Portugal held a referendum about
abortion, approved by the Assembly of the
Republic in consequence of accordance between
the two larger Parties of the Left and Right Wing
(PS – Socialist Party and PSD – Social Democratic
Party). The question was: “Do you agree with thelegalization of voluntary termination of pregnancy,

if done by option (of the woman) in the first 10
weeks, in a legalized health establishment?”. Half,
50.9% voted against the law and 49.1% in favor.
The referendum was not validated because only
31.9% of the electors voted (to be validated morethan half of the electors had to vote - Law nº15A/98, April 3). Consequently, the Assembly can
now decide for a new referendum or wait for a
project of law (concerning legalization of abortion)
to be subject to approval. For a referendum to takeplace a proposal with more than 75 000 electors’
signatures must be delivered to the Assembly of the
Republic (AR), the competent Committee andultimately the President have to accept the proposal
and finally the AR has to appreciate and vote it. If it
is approved the President submits it to theConstitutional Court and if accepted the President
has the final decision to the realization of thereferendum.
7 – What is the Present Political Scenario around
Voluntary Termination of Pregnancy?
The present government (now in the hands ofPS) wants to convoke a new referendum. The
proposal to the Assembly was delivered in April
2005 being supported by the other left wing parties(PCP – Portuguese Communist Party, BE - Left
Block and PEV – Green Ecologist Party). The
President Sampaio is personally favorable to theevolution of the law. However, the decision of the
President, known in May, was against thereferendum, not for political reasons but because
the referendum (legally) would have to take place
in a Sunday in the month of July, month of holidays
for many Portuguese. He considered that “minimal
conditions to a significant participation of thePortuguese were not gathered”. A survey conductedin April 2005, revealed right after the position of
the President, indicates that 54,3% of thePortuguese are in favor of the legalization ofabortion, against 28,6% that make the “No” option.
The other 16% didn’t have an opinion or did notwanted to answer.
There were different reactions to the President
decision: PCP defends that the left wing majority
permits the approval of the legalization of abortionin the Assembly without the necessity of a newreferendum. Probably the PCP will be against a
new proposal to public consultation. In face of thedecision of the President the BE also defends theapproval of the law in the Parliament. The PSD and
CDS-PP (Popular Party), both right wing parties,
approved the decision of the President because theyEubios Journal of Asian and International Bioethics 16 (March 2006)
consider that it is not a priority question in face ofother political questions. The Government
promised that it would bring back the question
about the presentation of a new proposal to areferendum, but the PSD (major opposition party)
and CDS-PP were against the referendum before
the end of 2005, proposing it to the spring of 2006,
after the presidential elections.
Conclusions
Regarding Portugal and up to this date, abortionis considered a crime according to the Portuguese
penal code. Abortion may not be punished if itproves to be the only means to avoid irreversible
lesions of the fetus or the physical or mental healthof the pregnant woman.
Statistics have proved that in the countries thatwaived abortion penalty abortion rate as not raised.
The risks of abortion without the surveillance of
health professionals may be severe. The
referendum may not be the best way to tackle sucha delicate situation. The Government however,through the Members of Parliament should
endeavor such difficult task by issuing the rightlegislation. According to the questions in thepresent article one may anticipate that theaddressed Parliament debate, although not meetingthe consensus of the different parties, will prove to
be righteous in introducing the necessary changes
in the present legislation.

From Human Rights to Patient
Rights- Gokce, A.N*., Başağaoğlu, İ., Üvey, D.*
Istanbul University, Istanbul Faculty of Medicine,
Department of Deontology and History ofMedicine,
Istanbul, Turkey
Abstract
Right is an authority given and protected by law.
Human rights, highlighted with French Human
Rights in 1791, were promulgated in Turkey during
the Ottoman Empire with the Gulhane Royal Edict(Gulhane Hatti Humayunu) in 1839, the Reform
Edict (Islahat Fermani) in 1856 and the RoyalConstitution (Kanun-i Esasi) between 1876 and
1878. In the Republican period, human rights wereassessed parallel to patient rights. In the West,
Thomas Percival introduced ethical rules in modern
medicine in his book, "Medical Ethics" in 1803.

55

The international patient rights declaration, theLisbon Declaration, was published in 1981. "The
Medical Deontology Regulation” promulgated in
Turkey in 1960 mentioned patient rights in its 4th,
5th, 6th and 14th articles. The subject was again
exclusively dealt with in the Patient Rights
Regulation promulgated in 1998.
A right is acknowledged and protected by law.
The wide variety of interests, under the protectionof law, indicates the existence a variety of rights
such as rights of creditors, rights of being, right toown property, right to vote etc. The protection ofrights by private law is called private rights
whereas their protection by public law is called
public rights (9). The rights to vote and to be voted,
to propagandise for a line of ideology, to participate
in meetings etc. are assessed amongst private law.
On the other hand, the basic rights of individuals
are dealt within Constitutional law (12). The mostfundamental human right is the right to survive
since the violation of the right leaves the otherrights null and void.
The first written rules regarding human rights
are the French Human Rights Declaration in 1789.
According to the 16 article declaration:
Article 1 - All men are born and remain free and equal inrights. The social distinctions can be founded only on thecommon utility.
Article 2 - The aim of any political association is theconservation of the natural and imprescriptible rights of theman. These rights are freedom, the property, safety andresistance to oppression.
Article 3 - The principle of any sovereignty lies primarily in
the Nation. No body, no individual cannot exert authority,
which does not emanate from it expressly.
Article 4 - Freedom consists in being able to do all that does
not harm others: thus, the exercise of the natural rights of eachman has terminals only those which ensure the other membersof the company the pleasure of these same rights. Theseterminals can be given only by the law.
Article 5 - The law has the right to defend only the harmful
shares of the company. All that is not defended by the law
cannot be prevented.
Article 6 - The law is the expression of the general will. All
the citizens have right to contribute personally or by theirrepresentatives to his formation.
Article 7 - No man can be marked, be stopped or held that in
the cases determined by the law and according to forms'
which it prescribed.
Article 8 - The law should establish only sorrows strictly andobviously necessary and no one can be punished only under
the terms of one law established and promulgated before withthe offence, and legally applied.
Article 9 - Any man being supposed innocent until be was
declared guilty, if it is considered it essential to stop him, any
rigour which would not be necessary to be ensured of its
person must severely be repressed by the law.

56

Eubios Journal of Asian and International Bioethics 16 (March 2006)

Article 10 - No one should not be worried for his opinions,religion, provided that their demonstration does not disturb
the law and order established by the law.
Article 11 - The free communication of the thoughts and theopinions is one of the most invaluable rights of the man; any
citizen can thus speak, write, print freely, except answering of
the abuse this freedom in the cases determined by the law.
Article 12 - The guarantee of the humans right and of thecitizen requires a police force; this force is thus instituted forthe advantage of all, and not for the particular utility of thoseto which it is entrusted.
Article 13 - For the conversation of the police force, and forthe expenditure of administration, a common contribution isessential; it must be also distributed between the citizens,
because of their faculties.
Article 14 - The citizens have the right to note, by themselvesor their representatives, the need for the public contribution,
to agree it voluntarily, to follow employment of it, and to
determine of it the share, the balance, covering and theduration.
Article 15 - The company has the right to request accountfrom any public agent of its administration.
Article 16 - Any company in which the guarantee of therights is not assured nor the determined separation of thecapacities, does not have a Constitution.
Article 17 - The property being a foolproof and crowned
right, no one cannot be private from it, if it is not when publicneed, legally noted, requires it obviously, and under thecondition of a Just and preliminary allowance.

The cry for human rights with the French
Human Rights Declaration was echoed in different
times and countries in the world. Human rights
were handled in the Ottoman Empire on various
occasions such as the Gulhane Royal Edict(Gulhane Hatti Humayunu) in 1839, the Reform
Edict (Islahat Fermani) in 1856 and the RoyalConstitution (Kanuni Esasi) between 1876 and
1878. The chronological order of these activities is
as follows:
1. 1839 Gulhane Royal Edict Principles
The fundamental laws constituting the backbone ofrunning the state are the protection of right tosurvive, to lead a honorary life and to own
property.
2. 1856 Reform Edict Principles- The freedom to adopt any religion and a sect
within the religion is secured. The people ofdifferent nationalities living in the Ottoman land
have the right to be state officials regardless of theirgender and religious background.
- Convention of the Supreme Assembly- No one in the Ottoman Empire will be forced not
to perform his or her religious obligations or to
adopt a different religion.

- Tax is to be equally distributed among themembers of the society.
3. The Articles of the 1876-78 Constitution- All the Ottoman people have their individual
rights and are bound by law not to violate others'
rights.
- All the Ottoman people are equal before law andthey are also equal according to their religions andreligious obligations.
- For the first time, a new type of management,
parliament is established.
- No citizen shall receive punishment for any otherreason or outside the framework of law.
- The religion of state is Islam. All religions in the
Ottoman land can be freely adopted and their
obligations can be freely performed.
- Tax cannot be collected or distributed without anarticle of law ordering it.
- The budget shall be discussed and determined in
the Parliament.
- Not a single article of the Constitution (Kanuni
Esasi) can be violated or omitted.
The subject of human rights was placed
exclusively on the agenda of the world as a matterof discussion following the establishment of
Nurnberg War Tribunal after the World War II. The
discussions have not come to an end yet and they
seem to continue to be on the agenda of the world.
The Universal Declaration of Human Rights (1948)
and its European version, European Convention toProtect Human Rights and Basic Freedoms (1954),
and similar regional documents in America andAfrica can be assessed as other examples in thisregard (8).
Although, as a universal concept, human rights
is protected and tried to be applied in real life
situations over declarations, announcements,
agreements and articles of law, the violations seem
to prevail with growing pace, and unfortunately thedata at hand indicates that the situation gets worse
everyday. Since it is obvious that the problem canonly be solved through education, regarding
courses are scheduled in course programmes ofvarious schools. The first course about humanrights in medicine was initiated at Harvard
University in 1991-92, and it was repeated in the
1994-95 period. Similar courses were scheduled
afterwards at John Hopkins in 1993, at California
University, Yale University and Boston University
in 1994. In a research conducted in the US in 1996,

Eubios Journal of Asian and International Bioethics 16 (March 2006)
the importance paid to the subject of human rights
was researched in post-graduate public healthcourses, and some suggestions were put forth in
this regard. In an article published in the "Healthand Human Rights" magazine, the research results
as to whether 28 public health schools in the US
and 15 other schools scheduling public healthcourses as MBA programmes were scheduling"human rights" courses. Thus, the schedules ofthese schools were scrutinised in detail, besides
public health programmes of other 34 countries
were studied. While 5 out of 28 schools stated thatthey scheduled "Human Rights and Health"courses; the rest declared that they lacked thesecourses (1).
Two Sample Health and Human Rights Courses:
The School of Public Health, Boston University
Title of the Course: Health and Human Rights
Scheduled by: Department of Medical Law
Main Subjects: Human Rights Philosophy in
Health, Human Rights Law, Health and Rights,
Risqué, Human Rights and Public HealthApplications, Women Health and Human Rights,
Health and Human Rights in Times of War, AIDS
and Human Rights, Experiment on Human Beings,
Doctor's Stand Against Human Rights Violations,
Sanctions, Non-governmental Organisations andHuman Rights.
The School of Public Health, Harvard University
Title of the Course: Health and Human Rights
Scheduled by: Department of International Healthand Population
Main Subjects: Part 1: Introduction to Human
Rights, History of Human Rights, Law of Human
Rights, Relevant Institutions, Monitoring, Sanction,
Universalism and Relativity, Responsibilities andRestrictions in Rights.
Patient rights means in a way the application ofhuman rights in medical services and it takes its
reference directly from basic documents regarding
the human rights. Fundamental human rights suchas determining the way to lead a life, leading asecure life, receiving respect from others as ahuman being, showing respect to others, etc.,
constitutes the core of patient rights. After it wasdetermined that the basic rights which can be taken
under the protection of law within the framework of
the legal system were the right to be autonomousand the right to determine one's own way of life,
the legal structure of patient rights, that is the57

relation between patient and doctor which is mainly
conducted in line with ethics and defined with trust,
was defined again. In fact, the principle of equallyremains incomplete when it is defined within theframework of trust relationship, which is a situationthat can only be overcome with the internalisationof the principle of equality.
The main objection to be followed in re-defining
patient rights within modern law and placing themunder the protection of law is to set a ground where
patients can actively and equally participate in theirrelations with the doctor. To determine the legal
framework of patient rights we should take into
consideration the national law, which includes
approximately 47 law articles, 16 regulations and
10 statutes as a medical work of legislation. There
are some problems regarding the legal frameworkof relations between the patient and doctor in
effectively applying patient rights, in drawing thelines of legal responsibility of the doctor, and active
application of rights by the patient. In fact, in
determining the framework of doctor's legal andpenal responsibility the effective application ofpatient rights is regarded as a criterion (5).
The History of Patient Rights
Patient rights follow almost the same historicalpattern with individual rights. Individual rights are
the rights which separate the person from othermembers of the society, and they can only be usedby the specific person. The development of theserights brought about important and new aspects tothe doctor-patient relationship. Previously, thedoctor applied the traditional way which we label
as paternalistic behaviour or manner where, under
the guidance of scientific facts and researches, heconducted the treatment and diagnosis byhim/herself. The traditional way leaves aside
informing the patient about the quality of medical
application, side effects, development, alternatives
etc. and other demands from the patient are nottaken into consideration. When the nature of
relationship is concerned, it seems that the only
individual the patient can claim his/her right is thedoctor. The ethical aspect of doctor-patient
relationship has been thought to be the"responsibility of the doctor" since the time of
Hippocrates until the last 25-30 years.
Consequently, within the axis of responsibilities
and rights, patient rights have been neglected (2).
The responsibility of doctor, as to its historicaldimension, dates back to ancient times. In prehistoric and ancient times, generally magicians and58

Eubios Journal of Asian and International Bioethics 16 (March 2006)

religious men were busy with medicine, and they
prepared drugs using hashish and performing
sorcery to treat patients. As a part of these
activities, it was a generally accepted principle thatin times of wrong-doing or not being able to curepatients the religious men conducting medicine
were not deemed responsible for their deeds. On
the other hand, it was also clear that in times ofmaking obvious mistakes the doctor could notbenefit from a state of absolute non-punishment.
Some documents surviving from ancient times
mention the art or treatment and the rules regarding
the responsibilities of doctors in Babel, Sumerian,Hittite, and Ancient India. These rules can also befound at written documents such as the Hammurabi
Rules (1800-1750 BC) of the Mesopotamian
Civilisation. While famous thinkers such as
Hippocrates (470-399 BC), and Aristotle (384-322
BC) defended the view that the doctor should beheld responsible for wrong-doings, Plato (428-348
BC), on the other hand, defended the opposite
suggesting that the doctor should have immunity intimes of wrong-doing (7).
There are examples indicating that in ancient
times the doctor was held responsible for his deeds
when he avoided paying his patients appropriate
attention, or neglected them. The most striking
example in this regard belongs to Alexander theGreat (356-333 BC). Alexander the Greatsentenced the doctor to death for being responsible
for his lover's death due to negligence. In addition
to many books about medicine, the famous thinkersof the Islam world such as Ar-Razi (854-932),
Farabi (870-950), Biruni (973-1051) and Ibn Sina(980-1037) wrote books and thoughts dealing withmedical ethics. In the Seljukian and Ottoman
periods, medical ethics held the doctor responsible
against his conscience.
The following is a dialogue, which took place
between A. Pare, a renowned surgeon of his time,and Charles IX:
During the Ruen Siege the King asks:- I hope you will treat your king better than a poor
citizen.
- No your majesty. I beg your pardon but that is
impossible.
- Why is that?
- Because I treat a poor citizen like s/he is a king.
In the West, on the other hand, the foundation ofcodes of modern medical ethics was laid byThomas Percival. His views were published under
the title "Medical Ethics". The Medical Academyof Paris adopted the view in 1829 that the doctor

conducting treatment in line with his/her own limitsof conscience should not be held responsible for hisdeeds. American Medical Associations accepted ina meeting in Philadelphia in 1874 the medical
ethics, and demanded the application of themduring medical education. The French Deontology
Law was regulated positively with written
principles and published in the official gazette (6).
The doctor-patient relationship, which is dealt withwithin the framework of "the responsibility of
doctor" in its historical dimension, has changed in a
way that enabled the patient to claim his/her rights
not only from the doctor, but also from all members
working in medical field. The trend, which evenleaves out the responsibility of doctors and othermembers of medicine, regards today the hospital as
the responsible institution. Consequently, not only
doctors or medical workers, but also executives
have crucial responsibilities in securing patient
rights (3).
As a concept patient rights is a completely new
subject in our country. Thus, doctors are not quite
knowledgeable about it, which brings along alimited level of interest. When public interest isconcerned, there is nothing much to mention;
patient rights are put on the agenda when patients
suffering from a wrongdoing are covered by massmedia channels.
In Turkey patient rights, as a concept, arehandled within the framework of health-care rights.
Although patient rights and health-care rights seemto be close to each other, they are completely
different concepts. Patient rights originates fromthe relationship between the doctor-patient andhospital whereas health-care right from state andindividual (4).
The rights of patients are stated in theConstitution of 1982 (17/2) as follows: "Except for
medical necessities and rights stated in codes oflaw, the integrity of an individual's body cannot betouched, and cannot be exposed to scientific andmedical experiments without the individual'sconsent." and the realisation of health-care right isgiven as a responsibility to the state.
"Patient Rights Regulations", promulgated in
1998, are the most important achievement inTurkey when human rights is concerned. Due tobearing the phrase "patient rights" in its title, every
subject placed in the regulations should be accepted
as patient rights and applied in real life situations.
The first article of regulations mentions the generalapproach regarding the concept of patient rights.
The first article is as follows: The regulation wasEubios Journal of Asian and International Bioethics 16 (March 2006)
prepared in order to enable every individual tobenefit from "patient rights" which are thereflection of human rights and are mentioned
initially in the Constitution of Turkey and invarious international legal documents andagreements, to be protected against violations ofrights and to use legal channels in the event of any
violation, in a way that protects human dignity." On
the other hand, Article 48 puts forth an important
aspect as to application.
The regulation bears the underlying reason to
make every relevant individual aware of patient
rights. It requires the preparation of leaflets andinformation boards, which include proper andcomplete information about subjects in medical
institutions. It is stipulated in Article 48 that all
official executives in medical institutions are
responsible for placing the patient rights as a list on
an open environment allowing easy access topatients, the personnel of institutions, and visitors,
aiming at being helpful in realising the basic
principles of patient rights.
The 4th, 5th, 6th and 14th articles of the “Medical
Deontology Regulation”, which has been in force
since 1960, has many aspects in common with the
1st, 2nd, and 4th articles of the Lisbon Declaration, adeclaration issued by the World Medical
Association in 1981. The articles mentioned in the
Medical Deontology Regulation 21 years before theinternational patient rights declaration can be
regarded as the importance given to patient rights in
Turkey.
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p.14-20
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Garan Matbaacılık İstanbul, 1979, p,128-140News in Bioethics & Biotechnology
http://www2.unescobkk.org/eubios /NBB.htm
Please note that since 2005 the News review does notinclude news searches from popular journals such as
Nature, New Scientist, Science, nor Medical Journals, asother search engines will easily pick up bioethics news
articles in those journals.
Engineering Ethics
Papers on integrating ethics into engineering and science courses
are in Science & Engineering Ethics 11 (2005), 631-70. The ethics ofearthquake prediction are discussed in Science & Engineering Ethics
10 (2004), 655-66.
Ethics and Physical Sciences
A series of papers on Einstein, space and time, evolution andphilosophy are in Revista Portuguesa de Filosofia 61 (2005), 3-223.
Nanoethics is discussed in Science & Engineering Ethics 10 (2004),
627-38; 11 (2005), 521-34. On ethical and legal issues ofnanotechnology, Health Law Review 12 (3) (2004), 3-77; Law and
the Human Genome Review 22 (Jan. 2005), 27-48; Health Law J. 12(2004), 103-24.
Genetic Engineering of Plants
Use of oil palms for energy production is discussed in The Ram’s
Horn 235 (2006), 1-2. The World Bank has supported the planting of
1.4 million GM popular trees in a large experiment in China, The
Ram’s Horn 225 (2004), 2-3. Argentina is now the world’s second
largest producer of soybean and most is GM, The Ram’s Horn 229(2005), 1-3.
Genetic Engineering of Animals
Designer Molecules
Biotechnology & the Public
A genetics bill of rights is suggested in GeneWatch 18 (Jan.
2005), 12-4.
Regulation & Field Trials of GMOs
A French court in the city of Orleans dismissed charges ofcriminal vandalism against activists who uprooted GM corn planted
by Monsanto in 2004-2005 in that region, The Ram’s Horn 236(2006), 3. India rules on GMOs are discussed in Asian Biotechnology
and Development Review 7 (2005), 33-42.
The ethics of biowarfare is discussed in CQHE 14 (2005), 30621; GeneWatch 17 (Nov. 2004), 1-21; 18 (Sept. 2005), 9-11. The
ethics of all sorts of new weapons raise serious questions, Science &Engineering Ethics 10 (2004), 667-92. A review of Beam, TE. Et al.,eds., Military Medical Ethics is BME 210 (2005), 20-28.
Vaccines & Diseases
Ethics of vaccination of infants is discussed in Italian, Bioetica e
Cultura 28 (2005), 65-72. MMR ethics is discussed in Nursing
Ethics 12 (2005), 43-58.

60

Eubios Journal of Asian and International Bioethics 16 (March 2006)

AIDS & Sexually Transmitted Diseases
Bioethics in Tanzania with special reference to HIV is discussed
in CQHE 14 (2005), 256-67. On HIV in Malawi, Nursing Ethics 12(2005), 187-92. A Catholic perspective on the use of condoms toprevent HIV is in National Catholic Bioethics Quarterly 5 (2005),
37-50. Public disclosure of HIV status is discussed in Nursing Ethics
12 (2005), 288-95. Ethical issues in HIV vaccine trails in India arereviewed in Indian J. Med. Ethics 1 (2005), 109-112.
Microbes & Pollution Remedies
Environmental Issues
A report from the World Commission on the Ethics of Scienceand Technology (COMEST) on the Precautionary Principle isavailable to download from the UNESCO homepage,www.unesco.org/shs/ethics There are increasing stories of violenceover water shortages, and traditional methods may be used topreserve water resources, Honey Bee 16 (April 2005), 4-6.
Biodiversity
Biological diversity can also be preserved while preserving
human culture as well, Honey Bee 15 (July 2005), 12-3. Biodiversity
contests are also ways to preserve biodiversity being used in India,
Honey Bee 16 (July 2005), 4-7.
Animal Rights
The ethics of behavioural research on captive animals is
discussed in Science & Engineering Ethics 10 (2004), 717-34.
The ethics of pet cloning are discussed in HCR 35 (Nov. 2005),
34-9. Use of animal organs for transplants is discussed in Turkish J.
Medical Ethics 12 (2004), 242-7.
Brain function
Two papers on ethics of neuroscience are in Science andChristian Belief 16 (2004), 98-156. Neuroethics is also discussed in
BME 210 (2005), 3-4.
Safety of Recombinant DNA Products
Food safety
Laws on GM food in the USA are discussed in GeneWatch 18(Jan. 2005), 15-8. The right to food is argued for in The Ram’s Horn
232 (2005), 1-2. A registry of alleged GM food contamination is
online at <www.gmcontaminationregister.org>
Disease Risks & Drugs
Some sensitive public health data is buried from public view,
Science & Engineering Ethics 10 (2004), 597-614. FDA in the USA
is considering reform of drug safety testing, HCR 35 (May 2005),
10-11.
Patenting & Business
Ownership rights of the body are discussed in CQHE 15 (2006),
89-100. Papers on the ethics of IPR from the 5th International
Conference on Bioethics, The Ethics of Intellectual Property Rights
and Patents, Warsaw, Poland, 23-24 April, 2004; are in Science &Engineering Ethics 11 (2005), 1-160. One alternative is open source
biotechnology, GeneWatch 18 (Jan. 2005), 6-11. Anonymity andproperty rights are discussed in Law and the Human Genome Review
22 (Jan. 2005), 153-78.
Bioethics and business are discussed in HCR 34 (Sept. 2004), 1436; The Ram’s Horn 236 (2006), 1-3. There has been controversy
over patent applications by Monsanto which relate to breeding ofpigs, The Ram’s Horn 232 (2005), 7. On the Canadian Supreme
Court decision in Monsanto v. Schmeiser, Health Law Review 13 (1)(2004), 44-7. Papers on patenting of biotechnology in India are in
Asian Biotechnology and Development Review 7 (2005), 1-108.
Birth Control
The ethics of sterilization of young, competent adults is
discussed in BMJ 330 (2005), 1323-5. The Indian Supreme Court has

made an announcement on sterilization, Indian J. Med. Ethics 2(2005), 40-1. A paper on the sense of autonomy in Chinese
reproductive policies is New Genetics and Society 24 (2005), 15-30.
Embryo Status
A new book reviewing the history of abortion in China andproviding interview data on the current opinions is Nie, Jing-Bao,
Behind the Silence: Chinese Voices on Abortion (Lanham, Rowman& Littlefield Pub. 2005, ISBN 0-7425-2371-3; 294pp.). A
supplement to Reproductive Health Matters 12 (2004), is Berer, M.,ed., Abortion Law, Policy and Practice, 234pp. On abortion in
Canada, CQHE 14 (2005), 287-91. Abortion in Australia isreviewed in MJA 182 (2005), 447-52. Papers on power, money andreproductive autonomy are in Reproductive Health Matters 12(2004), 6-137. Links between abortion and breast cancer are
reviewed in National Catholic Bioethics Quarterly 5 (2005), 303-30.
The symbolic value of embryos in debates on ethics is discussed
in CQHE 15 (2006), 22-35. Difficulties of legislating in humanembryo and cloning research are discussed in J. Law & Medicine 12(2005), 483-93. The possibility of making an artificial womb and its
affect upon abortion debates is discussed in National Catholic
Bioethics Quarterly 5 (2005), 283-302. Deciding the fate of frozen
embryos is debated in Medical Law Review 13 (2005), 244-56. A
critique of Health Canada’s proposals on consent for human embryo
research is Health Law Review 14 (2) (2005), 19-27.
Cloning and stem cells
The ethics of ES cell cloning are discussed in CQHE 15 (2006),
7-21; National Catholic Bioethics Quarterly 5 (2005), 249-282; KIEJ
15 (2005), 269-88; Science & Engineering Ethics 11 (2005), 589616; HCR 35 (Nov. 2005), 15-9; GeneWatch 18 (Sept. 2005), 12-5;
Science and Christian Belief 17 (2005), 199-222; New Genetics andSociety 24 (2005), 1-14; Law and the Human Genome Review 21(July 2004), 51-66. On the ethics of creating and sacrificing embryos
for stem cells, JME 31 (2005), 366-70. ES cell banks in the UK are
discussed in Law and the Human Genome Review 20 (Jan. 2004),
147-62.Stem cell research in Islamic countries is discussed in JME
31 (2005), 399-403. The cloning debate in the UK is reviewed in
CQHE 14 (2005), 268-76. The ethics of oocyte-assisted stem cellresearch from a Catholic perspective is discussed in National
Catholic Bioethics Quarterly 5 (2005), 465-70, 579-86. The futureuses of stem cells may affect the way we view human life, HCR 35(March 2005), 25-33.
There was much controversy over the scientific fraud of Prof.
Hwang Wook-suk, who has been fired on 20 March 2006 fromSeoul National University and suspended for five years fromreceiving Korean government funding in science for his fabricationof stem cell research papers, which have been withdrawn from thejournal Science. More articles will be introduced in future issues.
Assisted Reproductive Technology (ART)On ethics of ART, F&S 83 (2005), 1612-21. Use of fertility
treatment in patients with psychiatric illness is debated in Italian,
Bioetica e Cultura 27 (2005), 43-54. A series of papers on humanembryo transfer are in National Catholic Bioethics Quarterly 5(2005), 51-152. A review of commercial surrogacy is Health Care
Analysis 13 (2005), 11-31. On equity of access, JME 31 (2005), 2805. Ethics of sex selection is discussed in JME 31 (2005), 291-4.
Attitudes to ART in Sri Lanka are presented in New Genetics andSociety 24 (2005), 99-118. onsultation on the UK HFEA is called forin the UK, BME 210 (2005), 10-3.
A review of options for preserving fertility in women is in NEJM
353 (2005), 64-73. The psychological risks of multiple births
resulting from ART are reviewed in F&S 83 (2005), 1422-8.
Competition can increase the rates of multiple pregnancy, F&S 83(2005), 1429-34. Frozen sperm and frozen oocytes can give rise toembryos, F&S 83 (2005), 1547-56. The ethics of reproductive
ectogenesis are discussed in Science & Engineering Ethics 10(2004), 615-26. Dangers of egg donation are discussed in
GeneWatch 18 (Sept. 2005), 6-8, 16. Reproductive tourism inEubios Journal of Asian and International Bioethics 16 (March 2006)
Europe is reviewed sin Reproductive Health Matters 13 (2005), 1208.
Fetal Environment & Neonates
Papers on implementing ICPD and maternal health are in
Reproductive Health Matters 13 (2005), 6-119. Ethics of relating
during childbirth for midwives are discussed in Nursing Ethics 12(2005), 606-621. Ethics in pediatrics is discussed in Nursing Ethics
12 (2005), 223-252. Prevention of neural tube defects in Europe isdiscussed in BMJ 330 (2005), 574-5.
Genetic Disease Markers
Genetic Screening Methodology
Imaging and neuroethics is discussed in American J. Bioethics 5(2005), 5-38. Mandatory drug testing in urine of physicians isdebated in J. Clinical Ethics 16 (2005), 85-96. A review oftechniques and ethics of preimplantation diagnosis is F&S 83 (2005),
1347-53.
DNA Fingerprinting & Privacy
Patient’s privacy and human rights are discussed in Nursing
Ethics 12 (2005), 273-95; HCR 35 (Nov. 2005), 49; Health Law
Review 14 (1) (2005), 3-50. Obligations of human genetic data areraised in Macer, D. “Privacy, openness, and obligations of personal
human genetic data”, Dharma Deepika 10 (2006), 85-94. Laws toprotect against genetic discrimination are discussed in HCR 35 (Nov.
2005), 27-33; Law and the Human Genome Review 21 (July 2004),
103-26.
Ethics & Genetic Screening
Genetic testing of children for late onset disease is discussed in
CQHE 14 (2005), 47-56; and on genetic testing after breast cancer
diagnosis, CQHE 13 (2004), 417-19. Prenatal testing and disability
in the context of autonomy are reviewed in CQHE 14 (2005), 65-82.
Newborn screening is discussed in JME 31 (2005), 393-8. Syrian
women’s perceptions of ultrasound screening in pregnancy arereported in Reproductive Health Matters 13 (2005), 6 147-54.
Public opinion is surveyed in Elger, BS. “Attitudes of future
lawyers and psychologists to the use of genetic testing for criminal
behavior”, CQHE 14 (2005), 329-45. The use of genetic defenses forcriminal cases is discussed in Health Law J. 12 (2004), 35-70. In
Germany the debates on reprogenetics include the meaning of ethics,
HCR 35 (May 2005), 42-49. Reflections on Habermas related toeugenics are in HCR 35 (Nov. 2005), 31-42. Race and genes are
discussed in GeneWatch 18 (Jan. 2005), 3-17.
Gene Therapy
A Rawlsian perspective on ethics of human genetic engineering isin CQHE 15 (2006), 35-41. Design constraints on a post-humanfuture are discussed in Monash Bioethics Review 24 (2005), 10-19;
and letters on the post-human future are HCR 35 (Nov. 2005), 4-7.
Seven papers on justice and genetic enhancement are in KIEJ 15(2005), 1-106. The concept of authenticity in enhancement arecommon, HCR 35 (May 2005), 34-41. A review of the licensed genetherapy in China is in GeneWatch 18 (Nov. 2005), 10-3.
Human Genome Project (HGP)
The withdrawal of samples from a population genetic project is
discussed in JME 31 (2005), 385-92. Ethics and the epigenome,
including methylation of DNA, is discussed in GeneWatch 18 (Sept.
2005), 3-5. A review of the Harvard case of Xu Xuping is New
Genetics and Society 24 (2005), 57-78. On ethics of biobanks, Law
and the Human Genome Review 22 (Jan. 2005), 103-114. A paper by
Sir John Sulston on society and the human genome is Law and the
Human Genome Review 20 (Jan. 2004), 25-36.
General Medical Ethics
Medical ethics and culture are discussed in CQHE 14 (2005), 746, 100-6, 355-443; Moazam, F. & Jafarey, A. “Pakistan andbiomedical ethics: Report from a Muslim country”, CQHE 14

61(2005), 249-55. Codes and values on caring in Australia arereviewed in Nursing Ethics 13 (2006), 5-16.Reviews of the Nuovo
Dizionario di Bioetica (New Dictionary of Bioethics) are in Italian,
Bioetica e Cultura 13 (2004), 187-206. A paper on ancient ethics is
Takemura, E. “Approaches to the Samurai ethic in the BakumatsuEra”, Bulletin of the International Research Center for JapaneseStudies 31 (Oct. 2005), 47-68 (in Japanese with English summary).
A book review of Walter, JK. & Klein, EP., The Story of Bioethics:
From Seminal Works to Contemporary Explorations (Georgetown
University press, 2003) is HCR 35 (May 2005), 50-1.
Two new reports describing various models for ethics
committees are available to download from the UNESCO homepage,www.unesco.org/shs/bioethics Papers on ethics committees are in
IJB 15 (2004), 13-129. On research ethics in China, Turkish J.
Medical Ethics 12 (2004), 253-5. Inclusion of ethnic minorities in
research is called for in BME 211 (2005), 22-4. Complications arestill found in UK consent, BME 210 (2005), 15-9.
Patient ethics is discussed in 6 papers in CQHE 14 (2005), 131190. Natural law and moral theology is discussed in Alpha Omega 8(2005), 163-98. A series of papers on Kant in Portuguese are in
Revista Portuguesa de Filosofia 61 (2005), 347-607; 651-1096. The
Christian origin of medical compassion is discussed in National
Catholic Bioethics Quarterly 5 (2005), 243-8. A demand forreligious care in Taiwanese health care is seen, Nursing Ethics 13(2006), 163-79. Papers on Christian approaches to ethics are in
Dharma Deepika 10 (2006), 2-94. A series of papers on religious andcultural influences on behaviour are in Nursing Ethics 12 (2005),
557-605. Research in tribal communities is discussed in Indian J.
Med. Ethics 1 (2005), 122-5.
A review of trends in nursing ethics over the first 11 years of
Nursing Ethics journal is Nursing Ethics 13 (2006), 65-85. Medical
ethics and interrogation are discussed in HCR 35 (Nov. 2005), 17-22.
Bioethics and armed conflict are reviewed in HCR 34 (Nov. 2004),
3, 11-12, 22-30.
Bioethics Education
The resource book or text-book, Darryl Macer, ed., A CrossCultural Introduction to Bioethics, Eubios Ethics Institute 2006, isavailable
in
hard
copy
and
on
the
website<http://www.unescobkk.org/index.php?id=2508>
A call for teaching medical and nursing students together is madein Nursing Ethics 12 (2005), 167-77. Nursing ethics education is
discussed in Nursing Ethics 12 (2005), 5-18. Ethics education is alsoneeded for ethics committee members, KIEJ 14 (2004), 395-406. A
series of papers on public deliberation in bioethics taken by the US
President’s Council are KIEJ 15 (2005), 219-322. How the public
values bioethics commissions in the USA as public forums isdebated in KIEJ 14 (2004), 333-60. Teaching of medical ethics inUniversity of Londrina is reviewed in Turkish J. Medical Ethics 12(2004), 230-3.
A paper explaining a methodology of keyword analysis forassessment of student reports is Maekawa, F. & Macer, D. “HowJapanese students reason about agricultural biotechnology”, Science& Engineering Ethics 10 (2004), 705-16. Indian views on WHO
teaching guidelines are in Indian J. Med. Ethics 11 (2005), 54.
Twenty papers on web-based education in science andengineering ethics are in Science & Engineering Ethics 11 (2005),
323-511. The use of electronic discussion boards to teach responsible
conduct of research is also possible, Science & Engineering Ethics
11 (2005), 617-30. Reflection and ethics education are discussed in
HCR 34 (Nov. 2004), 31-8.
Law & Medical Ethics
Direct to the consumer advertising of medicines is debated in
CQHE 15 (2006), 42-9; Health Law Review 14 (2) (2005), 28-33. A
paper on bioethics in bureaucracy is CQHE 14 (2005),379-84. Papers
on ethical limits on human subjects research are in CQHE 13(2004), 313-416; HCR 35 (Sept. 2005), 12-3, 16-19, 20-43. Papers
on Canadian governance for ethical research on humans are in
Health Law Review 13 (2&3) (2005), 5-116; Health Law J. 12(2004), 125-200. Roles of nurses in clinical trials are discussed in62

Eubios Journal of Asian and International Bioethics 16 (March 2006)

Nursing Ethics 13 (2006), 180-6. Papers on expanding the roles ofnurses are in Nursing Ethics 12 (2005), 431-452. The ethics of proxyconsent for neonatal care is debated in Health Care Analysis 13(2005), 1-9.
Papers on medical malpractice in the USA are in HCR 35(March 2005), 15-24; and in India, Indian J. Med. Ethics 2 (2005),
60-1. An ethics of saying sorry for mistakes is called for in Nursing
Ethics 11 (2004), 568-76, 577-86. The risks of clinical trials are
discussed in KIEJ 14 (2004), 369-94. A critique of bioethics is
Health Care Analysis 13 (2005), 73-86. Papers on the responsible
conduct of basic and clinical research from the 6th International
Conference on Bioethics, Warsaw, Poland, 3-4 June 2005 are in
Science & Engineering Ethics 12 (2006), 1-200.
Prospects for reform of the United Nations are discussed by Ioan
Voicu in ABAC Journal 25 (Sept. 2005), 1-28. A report on theJanuary 2005 UNESCO consultation meetings on the Declaration on
Bioethics and Human Rights is HCR 35 (March 2005), 8. An
editorial on the Declaration is BME 211 (2005), 1. Papers on law andbioethics are in IJB 15 (2004), 15-174.
Scientific Ethics
A Japanese perspective on conflict of interest is in CQHE 14(2005), 277-80. Conflicts of interest are discussed in Science &Engineering Ethics 11 (2005), 515-7, 553-74; HCR 35 (March
2005), 13-4.
Euthanasia & Terminal Care
Causation and active euthanasia are discussed in CQHE 15(2006), 71-80; JME 31 (2005), 311-7; HCR 35 (May 2005), 53. On
terminal sedation in Italian, Bioetica e Cultura 29 (2005), 213-20.
PVS is discussed in Italian, Bioetica e Cultura 28 (2005), 94101.Papers on the distinction between ordinary and extraordinary
treatment are in National Catholic Bioethics Quarterly 5 (2005),
471-578; 4 (2004), 773-784. The Oregon state Death with Dignity
Act is discussed in National Catholic Bioethics Quarterly 4 (2004),
739-54. Assisted suicide in Belgium is discussed in European J.
Health Law 12 (2005), 39-41; and in Switzerland in European J.
Health Law 12 (2005), 25-38. The legal case of Theresa Marie
Schiavo in the USA is reviewed in HCR 35 (May 2005), 16-33;
JAMA 293 (2005), 2403-7; also in JME 31 (2005), 376-8.
The results of surveys are in Hsin, D. & Macer, D. “Confucian
and Taoist influences on the images of life among seniors in
Taiwan”, Turkish J. Medical Ethics 12 (2004), 211-25. Long term
nursing of elderly persons in Finland is reviewed in Nursing Ethics
13 (2006), 116-29. A good life for dementia patients is discussed in
Nursing Ethics 12 (2005), 30-42. On end of life care, JAMA 293(2005), 2265-71; 294 (2005), 359-65. Advance directives in New
Zealand are discussed in Nursing Ethics 12 (2005), 349-59. Ethics
in geriatric management and clinical research are discussed in JME
31 (2005), 355-9. Policies on end of life care in USA are reviewed in
J. Law, Medicine & Ethics 33 (2005), 294-309. Implications of endof life care in India are discussed in Indian J. Med. Ethics 2 (2005),
76-8, 79-85.
Organ Transplants & Brain Death
The preferences to donate organs inside groups is discussed in
CQHE 15 (2006), 50-9. Living donor liver transplantation is
discussed in Indian J. Med. Ethics 2 (2005), 89-93. On organ trade,
CQHE 15 (2006), 60-70; JME 31 (2005), 269-72, 362-5. Presumed
consent is debated in CQHE 14 (2005), 107-118. On the future
regulation of human tissue in the UK, Medical Law Review 13(2005), 170-223. A paper on brain donation for research is BME 211(2005), 17-21. A series of papers on US public attitudes to deathand organ procurement are in KIEJ 15 (2005), 211-32. Brain death
is questioned in Chiong, W. “Brain death without definitions”, HCR
35 (Nov. 2005), 20-30.
Health Costs
Justice and public health are discussed in CQHE 14 (2005), 1326. Age-based decisions on distribution of health care are debated in
CQHE 14 (2005), 83-99. Consent and limiting healthcare costs are

discussed in JME 31 (2005), 424-6. The challenges of global
consumption and governance of pharmaceuticals in the UK are
reviewed in BMJ 331 (2005), 40-2. A review is Hammonds, R. &Ooms, G. “World Bank policies and the obligation of its members to
respect, protect and fulfill the right to health”, Health & Human
Rights 8 (2004), 26-60.
Internet
Two sites which have daily news updates are:http://www.bioethics.com/
http://www.bioethics.net/

International Bioethics Education Project News
<http://groups.yahoo.com/group/Bioethicseducation/>)

IAB Genetics & Bioethics Network: On-line
The complete address list is updated on the Internet.
Send all changes to Darryl Macer.

ABA Membership
http://www.unescobkk.org/index.php?id=41
New members:
Dr. Yasemin Oguz,
Ankara University, School of Medicine,
Dept. of Deontology; Morfoloji Bioasi Kat 2,
Sibhiye, 06100, Ankara, TURKEY
Email: oguzx001@yahoo.com
Dr. Agus Purwadianto
Email: apidiikf@jkt.bozz.com
and Dr. Amru Hydari Nazif
Email: amru96@cbn.net.id
Secretary, Indonesian National Bioethics Commission
Sasana Widya Sarwono LIPI, Lantai II
Jl. Jend. Gatot Subroto No 10, Jakarta 12710, Indonesia
Mr M.K. Tadjudin
Chair, National Accreditation Board for Higher Education
Jl. Jenderal Sudirman Bldg. C Fl. XIJakarta 10002, Indonesia
Email : tajudin@dnet.net.id
Persons who want to confirm their membership of the ABA
must send their completed membership form and fees to thesecretary (copy the form on p.200 of this issue), Darryl
Macer, (by Email, fax or airmail).

PLEASE RENEW ABA membership fees if you
wish to continue to receive EJAIB!

Send papers to EJAIB Editorial Office
Editorial address:

Prof. Darryl Macer
RUSHSAP, UNESCO Bangkok,
920 Sukhumvit Rd, Prakanong,
Bangkok 10110, THAILAND
Fax: Int+66-2-664-3772
Email: asianbioethics@yahoo.co.nz
d.macer@unescobkk.org

Eubios Journal of Asian and International Bioethics 16 (March 2006)
Conferences
A bioethics conference calendar website is:
http://www.who.int/ethics/events/en/
4th
International
DNA
Sampling
Conference: “Genomics and Public Health,” 4-7
June
2006,
Montreal,
Canada.
Visit
www.humgen.umontreal.ca/events/dnasampling.
UNESCO Consultation Meetings on Codes ofConduct in Science and Engineering:Tokyo, Japan, 14 April 2006
Delhi, India, 24-25 April 2006
Bangkok, Thailand, 15-16 May 2006
Contact: d.macer@unescobkk.org
Extraordinary Session of COMEST, 27-28 June,
2006, UNESCO Paris, France
Asia-Pacific Conference on Bioethics Education,
26-28 July, 2006, Seoul, Korea. Joint Conference
between Korean National Commission of
UNESCO and UNESCO Bangkok. Contact: Email:c.zeeland@unescobkk.org
Eighth World Congress of Bioethics and Seventh
Asian Bioethics Conference (ABC7), 6-9 August
2006, Beijing, China. ABC7 will be overlappingwith the Eighth World Congress of Bioethics.
Contact: Renzong Qiu, Email: rzq@chinaphs.org
Eighth Asian Bioethics Conference (ABC8), 19-23
March 2007, Chulalongkorn University, Thailand.
Contact: Dr. Soraj Hongladarom Email:hsoraj@chula.ac.th

The goals of EJAIB include:
1. EJAIB is the official journal of the Asian
Bioethics Association (ABA) and the IUBS
Bioethics Program.
2. To review and update news and trends inbioethics from around the world. Bioethics is
broadly defined as life ethics, including both
medicalandenvironmental
ethics,andenvironmental, ethical, legal and social issues
arising from biotechnology.
3. To pay particular attention to issues raised bygenetic and reproductive technology, and othernews for the International Association of Bioethics
Genetics Network. To publish letters on such
topics, promoting international debate.
4. To publish research papers, and relevant news,
and letters, on topics within Asian Bioethics,
promoting research in bioethics in the Asian region,and contributing to the interchange of ideas within
and between Asia and global international
bioethics. Asia is defined for the general purposesof this journal as the geographical area, including

63

the Far East, China, South East Asia, Oceania, theIndian subcontinent, the Islamic world and Israel.
5. To promote scientific responsibility, in
coordination with MURS Japan (Universal
Movement for Scientific Responsibility); and theInternational Union of Biological Sciences (IUBS)
Bioethics Program.

EJAIB Editor: Darryl Macer
Associate Editors
Jayapaul Azariah (All India Bioethics Association,
India),
Masahiro Morioka (Osaka Prefectural University,
Japan).
Managing Editor: Nobuko Yasuhara Macer
Editorial Assistants: Naoko Kimura, Catherine
van Zeeland
Editorial Board: Akira Akabayashi (Japan), Sahin
Aksoy (Turkey), Angeles Tan Alora (Philippines),
Atsushi Asai (Japan), Alireza Bagheri (Iran),
Gerhold Becker (Germany), Hasna Begum(Bangladesh), Minakshi Bhardwaj (UK), ChristianByk (IALES; France), Ken Daniels (New Zealand),Leonardo de Castro (The Philippines), Ole Doering(Germany), Norio Fujiki (MURS Japan), Tran Han
Giang (Vietnam), Dena Hsin (Taiwan), Rihito
Kimura (Japan), Frank Leavitt (Israel), Abby
Lippman (Canada), Margaret Lock (Canada), H.
Ahmad Ludjito (Indonesia), V. Manickavel(Nepal), Anwar Nasim (Pakistan), Mary Ann Chen
Ng, (Philippines), Jing-Bao Nie (China, New
Zealand), Pinit Ratanakul (Thailand), Qiu Ren
Zong (China), Hyakudai Sakamoto (Japan), Sangyong Song (Korea); Noritoshi Tanida (Japan), A.K.
Tharien (India), Yanguang Wang (China), Daniel
Wikler (USA), Michael Yesley (USA), Jeong Ro
Yoon (South Korea).
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 andthe contents are not endorsed by either Eubios
Ethics Institute or UNESCO, but are publishedin the spirit of academic freedom.
South-South dialogue is encouraged, andpapers outside of Asia and the Pacific arewelcome.

Eubios Journal of Asian and International Bioethics 16 (March 2006)

64

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Eubios Journal of Asian and International Bioethics
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Shaping Genes: Ethics, Law and Science of Using Genetic Technology in Medicine and Agriculture
by Darryl Macer, Oct. 1990, 421pp.
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Equitable Patent Protection in the Developing World
by William Lesser, May 1991, 150pp.
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Attitudes to Genetic Engineering: Japanese and International Comparisons (Bilingual)by Darryl Macer, May 1992 330pp.
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Intractable Neurological Disorders, Human Genome Research and Society Eds: N. Fujiki & D. Macer
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Bioethics for the People by the People
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Bioethics in High Schools in Australia, Japan and New Zealand,
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Protection of the Human Genome and Scientific Responsibility (Bilingual)
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Bioethics in India (includes 115 papers from Jan.1997 conference)
Eds: Jayapaul Azariah, Hilda Azariah & Darryl R.J. Macer
June 1998 ISBN 0-908897-10-3, 403 pp.
(Printed in India)
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Bioethics is Love of Life: An alternative textbook
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Bioethics in Asia (includes 118 papers from Nov.1997 conferences, ABC’97 Kobe and Fukui Satellite)
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June 1998 ISBN 0-908897-12-X, 478 pp. October 1999 ISBN 0-908897-14-6 (Japanese), 320pp.
Ethical Challenges as we approach the end of the Human Genome Project
Editor: Darryl Macer, April 2000 ISBN 0-908897-15-4, 124pp. Cost: US$20 UK£12 NZ$30 A$30 C$30 ¥2500 NZ$35
Bioethics Education in Japanese High Schools (in Japanese only)
Editor: Darryl MacerApril 2000 ISBN 0-908897-16-2, 112pp. Cost: US$20 UK£12 NZ$30 A$30 C$30 ¥1000
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Bioethics and the Impact of Human Genome Research in the 21st Century
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Bioethics in Asia in the 21st Century
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August 2003 ISBN 0-908897-19-7, 450pp. Cost: US$35 Euro35 UK£20 NZ$40 A$38 C$40 ¥3000
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Bioethics for Informed Citizens across Cultures (updated in 2006 as C.C.I.Bioethics below)2004, 280pp. (A4)
Editor: Darryl Macer
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Challenges for Bioethics from Asia
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November 2004 ISBN 0-908897-22-7 656 pp. Cost: US$35 Euro35 UK£20 NZ$40 A$38 C$40 ¥3000
A Cross Cultural Introduction to Bioethics January 2006, 300pp. (A4)
Editor: Darryl Macer

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