Eubios Journal of Asian and
International Bioethics
EJAIB Vol. 23 (3) May 2013
www.eubios.info ISSN 1173-2571
Official Journal of the Asian Bioethics Association (ABA)
Copyright ©2013 Eubios Ethics Institute
(All rights reserved, for commercial reproductions).
consensus building, include a day long workshop by Drs
Contents page
Amy and Arno Mindell on process work. Those readers
Editorial: Cross cultural bioethics discourse 69 who are interested in the ongoing trials of peace building
- Darryl Macer and conflict resolution on difficult issues of bioethics can
Living with a Misunderstood Disease: Myalgic contact the editor.
Encephalomyelitis / Chronic Fatigue Syndrome In this issue of EJAIB there is a paper discussing
in Japan 70 medicalization of fatique, and Living with a
- Miwako Hosoda Misunderstood Disease: Myalgic Encephalomyelitis /
Right to Abortion under International Law 72 Chronic Fatigue Syndrome in Japan, by Miwako Hosoda.
- Stellina Jolly There have been failures of medical systems to
Is Non-procreation the Solution to Human Suffering? 77 recognize certain persons as sick. The condition also
-Karori Mbugua has some implications for the way our society makes
What are the real qualifycations of professionals? people too tired.
Consideration from the Point of View of the Patients in Two papers discussing controversial topics to which
the Practice of Rehabilitation Medicine in Japan 80 there are many sides to debate are, Right to Abortion
- Katsuaki Yamano under International Law by Stellina Jolly, and Is Non-
Right without Choice and the Future of Bioethics procreation the Solution to Human Suffering? which is an
Discourse in Post-Colonial Society 83 analysis of David Benatar’s book by Karori Mbugua.
-Dr. Abdul Wahab Suri The Current State of Surrogacy The real qualification of professionals in rehabilitation
in Thailand and the Ethical Assessment of Dr. Somboon medicine in Japan, that gain people’s trust, is discussed
Kunathikom – A Study of Thai Reproductive Medicine by Katsuaki Yamano. Empathy to help persons come
(Surrogacy) Ethics, by Means of a Three-Layer back to real life was praised as a reason for building turst
Structural Analysis 93 between patients and doctors.
-Masayuki Kodama Abdul Wahab Suri discusses the Right without Choice
ABA membership 100 and the Future of Bioethics Discourse in Post-Colonial
Society, in the case of Pakistan. Masayuki Kodama
Editorial address: reviews the state of Surrogacy in Thailand and work of
Prof. Darryl Macer, Director, Eubios Ethics Institute, Dr. Somboon Kunathikom by Means of a Three-Layer
c/o Center for Ethics of Science and Technology, Structural Analysis. There will be further papers on cross-
Chulalongkorn University, Faculty of Arts, Chulalongkorn
cultural themes in the next issue.
University, Bangkok 10330, Thailand
Email: darryl@eubios.info
We need more submissions for the ABC and APSAFE
conferences, which is a convenient trip for those coming
from overseas, being 19-23 November in Chennai, and
Editorial: Cross-cultural bioethics discourse 27-30 November in Bangkok. Both will be significant
This May 2013 issue of EJAIB includes further papers
gatherings of researchers and policy makers, and please
from the Sixth Joint UNESCO-Kumamoto University
check the websites for conference details.
Bioethics Roundtable, held in December 2012. The 2013
roundtable will be held 7-9 December 2013, as a joint 14th Asian Bioethics Conference (ABC14), 19-23 November,
UNU-IAS and University of Kumamoto Bioethics Loyola College, Chennai, India, with Asian Bioethics
Association (ABA). Contact: selvam.mariadoss@gmail.com
Roundtable, following my departure from UNESCO
Bangkok. From 8-10 May there was a joint UNU- APSAFE1- The First International Conference of the Asia-
Kumamoto University Workshop on Finding Future Pacific Society for Agricultural and Food Ethics: "Food
Visions of our World: A Sustainable Japan and the World Safety and Security for the Twenty-first Century", 28-30
Nov., 2013. Chulalongkorn University, Bangkok, Thailand. See
---Dialogue Methodology for Social Change for A
website http://www.apsafe2013.org/
Sustainable Future at UNU-IAS in Yokohama, Japan.
The 60 participants discussed a variety of approaches to – Darryl Macer
,70 Eubios Journal of Asian and International Bioethics 23 (May 2013)
and placed in the category of psychosomatic diseases.”
Living with a Misunderstood (Mr. C, a ME/CFS patient)
Disease: Myalgic Finding themselves without full sympathy from doctors,
family members, and acquaintances, some ME/CFS
Encephalomyelitis / Chronic patients have created associations to share their
emotions and experiences. They have also approached
Fatigue Syndrome in Japan medical and biomedical scientists asking for further
biomedical research to discover the causes of ME/CFS
- Miwako Hosoda, PhD and more effective treatment options. In addition, patients
Faculty of Life Network Science, Professor, Seisa University, and patient groups have asked insurance and
Tokyo, Japan administrative agencies, as well as politicians, for better
E-mail: miwhosoda@seisa.ac.jp medical and social services.
miwhosoda@gmail.com
People with ME/CFS have refused being called “lazy”
and as having “mood disorders”. They have wanted
Introduction diagnoses to justify their physical symptoms and their
There are 340,000 people suffering from Myalgic pain. This change in status from “lazy person” and/or
Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) “social deviant” to “patient” is a process that Conrad and
in Japan, and 17 million people in the world. Despite the Snyder (1980) referred to as medicalization.
great number of people affected by the disease, there are It is somehow true that medicalization provides positive
still uncertainties surrounding ME/CFS. Of the four million outcomes for patients. For example, people are likely to
Americans who have ME/CFS, for instance, fewer than be considered sick and to avoid criticism that they are
20% have been diagnosed. Even one is diagnosed with unable to engage in expected social activities (Parsons
ME/CFS, few medical and social service is provided, 1951). Once the ME/CFS sufferers are provided with a
because ME/CFS has not been considered a critical legitimate reason for their physical difficulty, they could
illness or a responsible disease for severe disability. obtain the designated treatment, which is covered by
In most cases, people are diagnosed with ME/CFS health insurance and the social services for the person
when they feel long-term fatigue without any physical with disabilities. However, it will take a great effort to
abnormalities recognized by medical examinations, such “medicalize” ME/CFS patients (Clark 2003). Therefore,
as blood test, CT, or MRI. The US Center for Disease Dumit (2006) called ME/CFS “the illness you have to fight
Control (CDC) developed this definition in 1988. to get”.
However, long-lasting fatigue is also a symptom of other
diseases. For this reason, Post-viral fatigue syndrome A survey on the people with ME/CFS
(PVFS) or Chronic Fatigue and Immune Dysfunction In this manuscript, I explore the real life with a lot of
Syndrome （ CFIDS ） has recently been used as an difficulties of the people with ME/CFS by conducting a
alternate name to distinguish it from simple fatigue. questionnaire survey targeting them. Participants were
As of today, the causes of ME/CFS have not been collected through the Japan ME/CFS Association and
identified, and no specific diagnostic tests are available. other ME/CFS patients. Two hundred fifty six
However according to the international criteria, it is questionnaire sheets were distributed from March 2012
known that people with ME/CFS are so run down that the to October 2012, and 135 sheets were returned
syndrome interferes with their lives and can make them (responded rate was 53%). This survey was reviewed by
dysfunctional at all. Furthermore, they are not just the Harvard School of Public Health and approved as an
dealing with extreme fatigue but with a wide range of IRB Exemption (Protocol Number 21687-101).
other symptoms, which include sudden severe fatigue, Half of the participants were in their 40’s and 50’s. And
sleep without refreshing, muscle and joint aches without 7% of the participants were teenagers. 78% percent of
swelling, intense or changing patterns of headaches, the participants were female. As for the marital status,
sore throat, swollen lymph glands in the neck or armpits, 45% of the participants were non-married, while 37%
and memory problems/inability to concentrate. were married. 49% of the participants received university
Despite of the definition, many people including doctors and higher education, 22% were high school graduates,
think that ME/CFS patients are only complaining their and 19% finished occupational school.
fatigue. Even ME/CFS “specialists” adhere to the stress
theory, which suggests that great amounts of stress Results
cause ME/CFS, and these specialists thus diagnose Living with never-ending fatigue and pain
patients with mood disorders or somatic disorders. As a Almost all participants felt severe fatigue all the time;
result, patients have been forced to overcome the illness 49% of the participants felt fatigue and extreme tiredness
through their own efforts. Many patients have complained all the time, 31% did most of the time, and 14% about
about this situation, both in the US and Japan: half of the time, while only 6% suffered a little of the time.
“Physicians did not want to understand my physical In addition, the participants were suffering from the next
pain and seemed to deny my personality, which greatly day soreness or fatigue after non-strenuous daily
saddened me.” (Ms. A, a ME/CFS patient) activities; 61% of the participants felt next day fatigue all
“You see in this country, ME/CFS was not accepted as the time and most of the time, 27% felt about half the
a legitimate illness. It was thought to be psychological time, and seven percent did a little of the time. Exactly a
half of the patients were bothered by severe pain or
, Eubios Journal of Asian and International Bioethics 23 (May 2013) 71
aching muscles throughout the past six months, and 38% physical condition and thought that I did not like school;
got moderate or mild pain and aching. Because of the The name CFS is very stigmatized; I visited an agency
onset of the problems with fatigue/energy, 82% of the hoping to find a job, but the agent did not recognize me
participants had symptoms caused a 50% or greater as a person with a disease.
reduction in the activity level. In response, people with ME/CFS have attempted to
Participants described their physical condition as raise awareness amongst medical professionals and the
follows: I am living with severe pain; I want to die general public and to inform them that ME/CFS is not a
because of extreme fatigue; I am afraid to die of difficulty psychiatric disease but is caused by an external factor,
in breathing; I will not be able to visit my primary care such as virus.
physician (PCP) when my symptoms get worse; My PCP People with ME/CFS have been contesting clinical
does not see me as a patient. diagnoses and expect that biomedical research on
ME/CFS will uncover the real causal factor of ME/CFS
Limited Healthcare and social services (Crossley 2005). Importantly, the people with ME/CFS
Even though the ME/CFS patients have extreme pin their hopes not on medical research as such, but on
fatigue and/or pain to spend their daily life or do not extra biomedical research.
energy to work, they do not receive enough medical and
social service to support them. In terms of the social Discussion
status/occupation, 29% of the participants were The survey shows that the people with ME/CFS were
unemployed. This unemployment rate is much higher suffering from many aspects of life; medical, social
compared to the Japanese average of 7%. welfare, and society. The sense of total isolation
The access to social services is very limited so that sometimes makes them feel their lives are useless
patients have been forced to stay home and isolated from (Hosoda 2010b). It can be said a “structural isolation”.
the society. Recently, some patients started to raise their They cannot work so that they lose their friends at their
voice to get appropriate social services to live their social workplace. They cannot go out so that they lose their
life. For example, Ms. A had negotiated with local private friends. They can sometimes move so that their
government officers for a mobile stretcher free-rent family does not understand their terrible physical
service for people with disabilities and eventually condition. Even more, when their physical condition
achieved this goal. Ms. A now appeals to the national allows them to try to have fun, they are blamed for
officers to ensure that ME/CFS patients are eligible for dishonesty. Once they contribute to the support group
appropriate medical and social services without being activities, people outside of the group expect them to
designated as disabled. work instead.
In many cases, however, they are still unable to receive The association of people with ME/CFS has already
appropriate social service. They said as follows: my made a lot of activities to live through, such as translating
activity range is decreasing. I cannot work anymore; I international documents and information written in
was fired. I have no money to live on; I need a helper to English into Japanese, screening of a documentary film
spend daily life, but it costs a lot; ME/CFS is not on ME/CFS, holding meetings for general public,
considered as a disease, so I cannot receive any social spreading awareness of the disease to medical
services. professionals, hosting lectures by specialists on ME/CFS,
advocacy to seek for social services, and scheduling
Expectations for social awareness patients’ meetings. This could be said to be a strategy for
The ME/CFS patients are also suffering from stigma the people with ME/CFS to live and an important theme
and social discrimination caused by their disease. When of sociology (Brown 2005, Kuhmann 2009).
Ms. A visited a ME/CFS specialist three years ago, she Additionally, these activities would become a connector
was told that, “you have pain because you think you have among many stakeholders, such as government officials,
pain. Your toothache will not disappear if you just lie on medical professionals, clinical practitioners and lab
bed. If you remain in bed because of the pain, you will researchers (Hosoda 2010a). Now would be the time for
not be able to sit in a chair. You have to change your bioethicists and social science researchers to pay
cognition. Try to think you can sit in a chair, then your attention to the patients in such condition. Those
pain will disappear.” Ms. A was very disappointed to hear researchers can also appear as a stakeholder of the
this advice. ME/CFS world.
Many physicians believe that the causal factor of
ME/CFS is psychiatric, and ME/CFS patients are References
sometimes diagnosed with a “somatic disorder”. Brown, P., Zavestoski, S. (2005) Social movements in Health:
However, according to the survey, 65% of the An introduction, Social Movement in Health, Oxford, Blackwell,
participants believed that the cause of ME/CFS is a 1-16.
Clark, A. et al. (2003), Biomedicalization: Technoscientific
physical problem, not a psychological or psychiatric
Transformations of Health, Illness, and U.S. Biomedicine,
factor.
American Sociological Review, Vol.68, 161-194.
Participants felt that were losing their social trust due to Conrad, P & J W Schneider, (1980), Deviance and
ME/CFS. The following statements were seen among the Medicalization: From Badness to Sickness, expanded ed,
open answers of the survey: I got this disease when I Philadelphia: Temple University Press
was a high school student. I was so sad because my
teacher and doctor did not understand my severe
, 72 Eubios Journal of Asian and International Bioethics 23 (May 2013)
Dumit J, (2006), Illnesses you have to fight to get: Fact as dimensional view expressed by Ayn Rand. It is a serious
forces in uncertain, emergent illness, Social Science and emotive issue bringing forth vehement moral, ethical,
Medicine, 62(3), 577-9-. social, religious, legal and human right arguments.
Hosoda, M. (2010a) Social Movement against the revision of
According to the World Health Organization (WHO),
the Social Health Insurance Fee for Rehabilitation Therapy, The 1
about 21.6 million women had unsafe abortions in 2008.
Japanese Journal of Health and Medical Sociology, 20(2), 64-
73.(Japanese) These unsafe abortions were responsible for the deaths
2
Hosoda, M. (2010b) Hansen’s Disease Recoverers as Agents of nearly 47,000 women. This paper attempts to analyse
of Change: A Case Study in Japan, Leprosy Review, 81, pp.5- whether there exists a legal or ethical right to abortion
16. under international human right law. It recapitulates and
Kuhlmann E., Allsop J., and Sacs M. (2009) Professional highlights germane progresses if any within the
Governance and Public Control: A Comparison of Healthcare in international legal systems in support of abortion and
the United Kingdom and Germany, Current Sociology, 57(4), protection of women’s life and health. The paper
511-528.
contends that denial of legal and safe abortion
Parsons, T., (1951), The Social System, Routledge.
procedures forces women to obtain unsafe traditional
abortions, threatening their life and health.
Right to Abortion under Abortion: Ethical and Legal Arguments
Abortion may have become easier as well as
International Law controversial with the rapid rise in technology, but as a
technique to thwart the unwanted pregnancy it can be
- Stellina Jolly, Ph.D. traced as far back as culture and civilisation of
Assistant Professor, Faculty of Legal Studies, humankind. Writings on abortion suggest that induced
South Asian University, New Delhi, India abortions in China dating back –to even 5000 years. A
3
Email: stellinajolly@sau.ac.in
typical case of abortion revolves around three or four
parties, pregnant women, unborn child, and society, and
Abstract
in some cases, father. A catenna of legal and ethical
The recent horrendous death of Savita Halappanavar in
arguments have been raised from all the sides in support
Ireland after the doctors there refused to conduct
and opposition of their positions. The major support for
abortion has evoked fierce, ethical, legal and human
abortion has come from the feminist literature and
rights debate. The Irish government reacted swiftly with 4
writers.
an assurance that a bill will be introduced allowing limited 5
The first argument is of bodily sovereignty. With regard
abortion right to women. Women’s organisations and
to abortion it is argued that bodily sovereignty dictates
feminists have long argued that the denial of access to
that there should not be any compulsion or force explicit
safe abortion is a flagrant violation of human right. This
or implicit on females to become pregnant, nor to carry
paper tries to analyse whether there exists a right to
on her pregnancy to the complete term. The development
abortion under international human rights law. It
of the principle of self-autonomy can be attributed to the
recapitulates and highlights relevant progresses if any
writings of John Stuart Mill. He conceded, ‘Over himself,
within the international legal systems in support of 6
over his own body and mind the individual is sovereign.’
abortion and protection of women’s reproductive
State should accept as lawful any activity unless it
autonomy. The paper points that denial of legal and safe
causes harm to others, even if it is regarded as immoral.
abortion procedures forces women to obtain unsafe and
But this viewpoint can be counterproductive in the
often traditional methods of abortions, threatening their
abortion debate if we accept a fetus as a legal person. In
lives and health. The paper tries to see how the issue of
such a scenario allowing abortion will not only be immoral
abortion can be approached in a balanced way.
but will be harmful to fetus. As an argument, the principle
Keywords: Abortion, Human Rights, Unborn,
of bodily sovereignty has limited application today. Most
International law, Reproduction
legal systems prescribe it as offence to attempt to commit
Introduction
“Abortion is a moral right—which should be left to the 1
World Health Organisation, Unsafe Abortion: Global and
sole discretion of the woman involved; morally, nothing Regional Estimates of the Incidence of Unsafe Abortion and
other than her wish in the matter is to be considered. Associated Mortality in 2008, (2011) pp 1-8.
2
Who can conceivably have the right to dictate to her what Op.cit., p 4
3
disposition she is to make of the functions of her body?” Eduardo Díaz Amado, Abortion Legally and politically feasible,
(Ayn Rand). BIoEthica, 9/ 1(2009), pp. 114-123.
The famous quote by Ayn Rand grants a complete <http://www.scielo.org.co/scielo.php?script=sci_arttext&pid=S1
prerogative to women regarding the utilization and 657-47022009000100011&lng=en&nrm=iso>. accessed
on 08 Jan. 2013.
functions of her body and aptly sums up the basis of a 4
Julie Loesch, Our Bodies, Their Lives, in Pro-life Feminism:
clear and strong argument in support of abortion making
Different Voices ed. G. G. Sweet (Lewiston, New York: Life
one wonder if abortion was such a straight forward sole Cycle Books; 1985), p 186.
concern of female why has it become the leading 5
J. Herring, Medical law and Ethics, (3rd ed., Oxford University
concern of many jurisdictions. Unfortunately the concerns Press 2010) p. 270-350.
6
surrounding abortion are far from the simple uni- J Mil, Liberty, (4th Edition, London: Longman, Roberts &
Green, 1869), p 14.
