Bioethics in Asia: Cultural or Ideological Boundaries?
Eubios Ethics Institute presents abstracts of the:
Fourth International Tsukuba Bioethics Roundtable (TRT4) and the Second Conference of the International Association on Feminist Approaches to Bioethics (FAB2)
The abstracts and program of the Fourth International Tsukuba Bioethics Roundtable and Second Conference of the International Association on Feminist Approaches to Bioethics. Copyright Eubios Ethics Institute 1998. These meetings were held 31 October - 3 November, 1997 in the University of Tsukuba. On-line at http://eubios.info/trt4.html
Cooperating Associations with Eubios Ethics Institute, FAB and IAB included: University of Tsukuba, All Indian Association of Bioethics, Asia Bioethics Association, Chinese Academy of Social Sciences, EuroScreen, Ford Foundation, Ibaraki Prefecture Science and Technology Foundation, International Union of Biological Sciences (IUBS) Bioethics Program, Korean Bioethics Association, WHO (SEARO), and additional donations from Sankyo Corporation, Japan Paper and Pulp Company.
The Ford Foundation sponsorred FAB2.
Chair TRT4: Darryl Macer
Chair FAB2: Gwen Anderson
This file is large and includes all abstracts that were received, please check EJAIB for publication of papers from these
meetings.
31 October
9am-1pm Methodology in Global
Bioethics and Medical Ethics
Darryl Macer, Eubios Ethics Institute, Japan/New Zealand - Welcome and
Explanation
Noritoshi Tanida, Hyogo College of Medicine, Japan - How Japanese medical
students understand informed consent?
Vicki Smye, St. Paul's Hospital Vancouver, Canada - Addressing Treatment
Refusal in Anorexia Nervosa: Application of an Ethical Decision-Making
Framework
Young Rhan Um, Dept. of Nursing, SoonChunHyang University, Korea - An
integrated Method of new Casuistry and Specified Principlism to Resolve Ethical
problems in Clinical Situations
Jong-sik Reem, Seoul, Korea - Respecting the cancer patient's right to know
Jens Seeberg, WHO/SEARO, (Denmark) - Qualitative methods in cross-cultural
health ethics research: Experiences from South-East Asia
Jan Bernheim, Free University of Brussels, Belgium - If subjective QOL is used
as the criterium, there is global progress, and this progress includes the
global ethical situation
Makina Kato and Darryl Macer, Japan - Lessons from the attitudes to persons
with AIDS in Asia
Sahip Pelin, University of Ankara, Turkey - Turkish women and medical ethics
R.R. Kishore, Ministry of Health and Welfare, India - The living minor as an
organ donor
Kaori Sasaki, University of Lancaster, UK - Beyond the conventional
dichotomy/dualism: Occidental value and Oriental value
John P. Lizza, Kutztown University, USA - Is defining death a biological or
cultural matter?
Daniel Fu-Chang Tsai, National Taiwan University Hospital, Taiwan - 'Respect
for autonomy' in Confucius' ethics
Lourdesita S. Chan, Ateneo de Davao University, the Philippines - Issues To Be
Considered In The Formulation of a Code of Ethics For Members of the Philippine
Health Social Science Association (PHSSA)
Caroline Camu–as, Columbia University, USA - Development of a Code of Ethics in
Viet Nam (POSTER)
2pm-6pm Is Bioethics Love of Life? Theories of Bioethics
Robert Veatch, Kennedy Institute of Ethics, USA - Theories of Bioethics
Darryl Macer, Japan - Bioethics is Love of Life
Alastair Campbell, Bristol University, UK- Rediscovering Virtue in Bioethics
Godfrey Tangwa, University of Yaounde, Cameroon - Is bioethics love of life? An
African view-point
V. Manickavel, College of Medical Sciences Bharatpur, Nepal - Love in Medical
Ethics in South Asia
Sunil K. Pandya, Jaslok Hospital & Research Centre, India - The importance
of love in ancient Indian biomedical ethics
Boris Yudin, Institute of Human Sciences, Russia - Love in Russian Bioethics
Zhang Daqing, Beijing Medical University, China - Love in Chinese Bioethics
Ole Doering, Institute of Asian Affairs, Germany - Can love be a language of
bioethics?
Frank J. Leavitt, Israel - The Meaning of Life as a Metaprinciple of Bioethics
(Is There Really any Difference between Religious and Secular Bioethics?)
Alireza Bagheri, Center for Medical Ethics, Iran - Love and Medical Ethics in
Iran
Leonardo de Castro, University of Phillipines, Philippines - Kagandahang Loob':
Love in Philippine Bioethics
Pinit Ratanakul, Mahidol University, Thailand - Love: A basis of ethical
principles in Thai bioethics
A.K. Tharien, Christian Fellowship Hospital Foundation, India - Love in Health
and Healing
6pm-8pm Opening reception
1 November
9am-1pm Bioethics Education (cosponsored by IUBS)
Jayapaul Azariah, Anbu Arivkkodi, R. Dhanapriya, Anbu Krishnika &
Minakshi, University of Madras, India - Coordinated Presentation of Opinion
Survey on Bioethics Education in India
Izumi Ohtani & Hiroaki Koizumi, et al. Japan - Bioethics Education Network
in Japanese High Schools
Hiroko Obata, Darryl Macer ,University of Tsukuba and Mairi Levitt - Biocult
survey in Japan and New Zealand, and comparisons to Europe
Tom Buller, University of Alaska, USA - The Scientist, the Lawyer, the Poet,
and the Comedian
Naomi Gale, Bar-Ilan University, Israel - Educating women for self worth
Peter Whittaker, National University of Ireland, Ireland - Bioethics and
Undergraduate Biology Education
Shinichi Shoji & Katsuko Kamiya, Japan - Student attitudes to illness
Mark G. Brennan, University of Bristol, UK - Ethics in action: a case study of
medical ethics education in a UK medical school
James Dwyer, USA - An ethics exercise for medical students
George Agich, Cleveland Clinic Foundation, USA - Developing Clinical Ethical
Judgment: Strategies for Clinical Bioethics Education
Ivan Segota and Nada Gosic, University of Rijeka,Croatia - Bioethics Education
in Croatia
Michael Tai, Chungshan Medical & Dental College, Taiwan - The Teaching of
Bioethics and the Making of a Socially Reponsible Health Professional
Bela Blasszauer, Medical University of Pecs, Hungary- Corruption in Health
Care: A Hungarian Analysis
Jens Seeberg, WHO, SEARO and Reidar Lie, University of Bergen, Norway - Ethical
dilemmas in clinical work: A research base for a teaching module for South- and
South East Asia
Vasantha Muthuswamy, Indian Council for Medical Research, India - The Role of
ICMR in Bioethics Education in India
Satoko Hayashi & Darryl Macer, Japan - The reporting of genetic engineering
in the Japanese media since 1973
Mairi Levitt, University of Central Lancashire, UK - The Gene Shop: assessing
the impact of a public education facility
Takeshi Oka, Kazushi Tsuruta, & Darryl Macer, Japan - Trials of teaching
strategies in bioethics education in Japanese high schools (POSTER)
2pm-6pm Environmental Ethics
Irina Pollard, Macquarie University, Australia - Bioscience Ethics - A New
Conceptual Approach to Bioethical Deliberation
K.K. Dua, Dayabagh University, India - Bhagavad Gita on the Genesis of
Bioethics
Richard Evanoff, Aoyama Gakuin University, Japan - A bioregional perspective on
global ethics
Hisanori Higurashi & Darryl Macer, Japan - Bioethics of transportation
choices
Richard Weisburd, Tsukuba, Japan - Is it Ethical to Securatize Ecosystem Goods
and Services?
Ryuta Kudo & Darryl Macer, Japan - Relationships towards animals in Japan
R.N. Sharma, India - The Noospherical restriction
Kouji Amemiya & Darryl Macer, Japan - Environmental education in schools
(POSTER)
Jan Bernheim, Free University of Brussels, Belgium - Quality of life (QOL) as
an individual empirical emergent construct (POSTER)
6pm-8pm Reception
Overdinner: Michael J. Kirby, UNESCO IBC, (Australia) -Challenges of global
bioethics
2 November (together with FAB2, cosponsored by Ford Foundation)
9am-11:15am Human Reproduction
Ken Daniels, University of Canterbury, New Zealand - Information sharing in
families who have utilised third party gametes - some cross-cultural
considerations
James J. Hughes, University of Connecticut, USA - Genes, Contracts and
Families: Attitudes Towards Surrogate Motherhood
Shinryo Shinagawa, Hirosaki, Japan - Human reproduction in Japan - Laissez
faire, assisted and controlled
Young Rhan Um, Dept. of Nursing, SoonChunHyang University, Korea - A Study of
Ethics about Induced Abortion in Korea
Peggy Battin, USA - Concepts of Contraception
Pilar Ramos Jimenez, Philippines - Social and Clinical Research of Reproductive
Tract Infections (RTIs) in Two Philippine Urban Poor Communities: Some Ethical
Issues
Irina Pollard, Macquarie University, Australia - Substance-Abuse and
Parenthood: Biological Mechanisms - Bioethical Challenges
Vangie Bergum, University of Alberta, Canada - Revisiting Personhood: Lessons
from Pregnancy and Mothering
Pitak Chaicahereon, Mahidol University - Buddhism and reproductive technologies
11:15am-1pm Biotechnology and Ethics
Donald M.Bruce, Society, Religion and Technology Project, Church of Scotland -
A Merging of Worlds - Engaging Biotechnology and Ethics in Scotland
Chee Khoon Chan, Universiti Sains Malaysia - The Double Jeopardy of
"Intellectual Property Rights"
M. Selvanayagam, and Francis P. Xavier, LIFE, India - Values for Bioethics and
Biotechnology
Kaoru Ushijima, Chiba Museum of Science & Industry - Trial exhibition on
biotechnology at a Science Museum & Visitors' knowledge & attitudes
toward biotechnology
Matti Hayry, University of Helsinki, Finland - Does cloning produce unnatural
persons?
Zelina Ben-Gershon and Bracha Rager, Ministry of Health, Israel - Human
Cloning: The evolution of the Israeli Legislation Project
Hiromitsu Komatsu and Darryl Macer, Japan - Expectations of biotechnology of
Japanese students (POSTER)
2pm-6pm Genetics and Ethics (cosponsored by Euroscreen)
Ruth Chadwick, University of Central Lancashire, UK - Virtual Genetic
Counseling
Fernanda Carneiro, FundaŤ‹o Oswaldo Cruz, Brazil - What does a woman want?
Considerations concerning an instant of Free and Informed Consent for the
Genetic Diagnosis of Breast Cancer
Gwen Anderson, Shriver Center For Mental Retardation, Inc., USA - A Feminist
Deconstruction of an Interdisciplinary Model of Delivering Genetic Health Care:
Building Transdiciplinary Teams
Alison Brookes, Deakin University, Australia - Women Negotiate Prenatal Genetic
Screening Programs
Darren Shickle, University of Sheffield, UK - Genetic screening and the Wilson
and Junger criteria
Simo Vehmas, University of Jyvaskyla, Finland- The Moral Significance Of Social
and Individualistic Explanations Of Disability In Bioethics
Yanguang Wang, Chinese Academy of Social Sciences - A call on a new definition
of eugenics
Ann Lewis Boyd, Hood College, USA - Genetics, testing, screening, enhancement
and therapy
Tuija Takala, University of Helsinki, Finland - Genes and the Future Shock
Fumi Maekawa and Darryl Macer, Japan - The Japanese concept of familial privacy
and genetic information in Asia
Erin Williams, Foundation of Genetic Medicine, USA - Foundation of Genetic
Medicine and Generally Accepted Principles, Protocols and Practices
Daniel Wikler, University of Wisconsin, USA - Cost-Effective Genetics and
Eugenics
Renzong Qiu, Chinese Academy of Sociasl Sciences, China - Cultural and Ethical
Dimensions of Genetic Practices in China
Robin Alta Charo, University of Wisconsin, USA - The Ethics of Genetic
Epidemiology
6pm-8pm
Reception
Overdinner: Wendy Orr, Truth and Reconcilation Commission, South Africa - Are
medical doctors the only scientists with ethical obligations?
3 November
FAB2 Globalizing Feminist Bioethics
(cosponsored by Ford Foundation)
08:00 -8:30 Welcome and Goals of the Conference - Anne Donchin
Darryl Macer, Host Committee, University of Tsukuba
Naoko Miyaji, FAB Country Representative, Kinki University School of Medicine
8:15-8:30 What Do We Learn from Japanese Feminist Bioethics?
Mashahiro Morioka, Japan
8:30- 10:00 Plenary Panel
Can Japanese Men Respond to Feminist Challenges? Toward a Dialogue
between Women's and Men's Studies
(Chair: Mary V. Rorty, USA)
Ryoko Takahashi, Japan - Gender in Bioethical Decision Making
Ichiro Numazaki, Japan - The Moral Responsibility of the Impregnating Sex: An
Autocritique of the Sexual and Reproductive Ethics of Men
Naoko Miyaji, Japan - On the Possibility of Legalizing Male Responsibility for
Contraception
10:00-10:30 Refreshments and Networking
10:30-12:00 Concurrent Sessions
A: The Practice of Feminist Bioethics
(Chair: Aida Santos, Philippines)
Debora Diniz, Brazil & Ana Cristina Gonzalez, Colombia - Feminist
Bioethics: The Speech of the Noise
Rainera Lucero, Philippines - Social Development Organizations & Their
Ethical Dilemmas
Maria Lourdes Acosta, Philippines - Hospital Ethics Committees in the
Philippines: Perspectives and Approaches in Decision Making
Lourdesita Sobrevega-Chan, Philippines - Abortion and Reproductive Health among
Filipino Women
B: Feminist Bioethics
as a Collaborative Enterprise
(Chair: Vangi Bergum, Canada)
Susan Sherwin, Canada - Reflections on the Experience of Pursuing Feminist
Health Care Ethics in a Collaborative, Interdisciplinary Network
Francoise Baylis & Jocelyn Downie, Canada - Women and Health Research: New
Canadian Research Guidelines
C: Evaluating the Relevance of Race, Ethnicity, and Gender in Medical
Research
(Chair: Susana Sommer, Argentina)
Nadine Taub, USA - Sex Bias in Pre-Distribution Drug-Testing: Two Northern
Responses
Florencia Luna, Argentina - AIDS Research and Developing Countries: Compassion
for Whom?
Laurel Guymer, Australia - Norplant: Women's Friend or Foe?
12:00-13:30
Lunch and FAB Business Meeting
Chair: Anne Donchin, USA; Gwen Anderson, USA; Susan Sherwin, Canada; FAB
Country representatives
13:30-2:30
Concurrent Sessions
E: Toward a Relational Understanding of Autonomy
(Chair: Nikola Biller, Germany, Argentina)
Anne Donchin, USA - Genetics and Personal Autonomy: At the Intersection of
Bioethical and Feminist Theories
Susan Dodds, Australia - The Development and Protection of Autonomy Competency and
Health Care Practice
Wendy Rogers, Australia - Autonomy in General Practice Consultations:
Theoretical and Practical Considerations
F: Fostering Reproductive Health and Sexuality
(Chair: Lourdesita Sobrevega Chan, Philippines)
Salud Zaldivar, Philippines - The Ethics of `HIV Clearance' for Returning
Overseas Filipino Workers
Veronica Tallo, Philippines - Financial Empowerment of Women Mediating for
Treatment of the Sick Child
Fatima Alvarez-Castillo, Philippines - Changing Perspectives and Challenges to
the Notion of Expertise: Grassroots Women as Experts and Exposing the Myth of
Bottom Up
Maria Delia Monares, Philippines - Poverty, Gender, and Reproduction:
Understanding the Terrain of Women's Lives
G: Combating Sexually Transmitted Disease
(Chair: Young Rhan Um, South Korea)
Zhai Xiaomei, Capital Medical University Beijing, China - Homosexuality in
China: Ethical Perspective
Xia Guo-mei Xia, China - Prostitution: Between Humanity and Commodity
Jin-Ling Wang, China - HIV/AIDS and Prostitution: A Feminist Perspective
Anjie Xu, China - Sex Education for Adolescents
3:00-3:30 Refreshments and Networking
3:30-5:00
Concurrent Sessions
H: Subverting Paternalist Legacies: Cross-Cultural Perspectives
(Chair: Alison Brookes, Australia)
R.R. Kishore, MHW, India - The Woman and Contemporary Bio-Medical Ethics:
Legacy, Paradox and Affirmation
Julia Bartkowiak, USA - Public Patients
Jeanelle de Gruchy & Laurel Baldwin-Ragaven, South Africa - Population
Control - health professional accountability in apartheid South Africa
Hasna Begum, Bangladesh - Feminists' Paradox in Relation to the Reality in
Bangladesh
I: Gender, Justice, and Families in Contemporary China
(Chair: Ren-zong Qiu, China)
Re-Feng Tang, China - Chinese Population Policy--Good Choice or Right Choice?
Zhu Wei, China - A Dilemma about Women's Reproductive Autonomy
Jiaxiang Wang, China - Domestic Violence in China: Facts, Causes and Measures
Ren-Zong Qiu, China - Reproductive Health: A Feminist Perspective
J: Advancing Feminist Bioethical Theory
(Chair: Gwen Anderson, USA)
Viola Schubert-Lehnhardt, Germany - Women's Views on Health in Times of Social
Change
Beth Goldstein, USA - Virtue Theory and Biomedical Ethics: A Feminist Approach
Carol Quinn, USA - Taking Seriously Victims of Unethical Experiments: Susan
Brison's Conception of the Self and its Relevance to Bioethics
5:00-5:30 Concluding remarks and announcements
Prof. Darryl Macer
Institute of Biological Sciences, University of Tsukuba
Tsukuba Science City, Ibaraki 305-8572, JAPAN
Fax: Int+81-298-53-6614
Please send comments to Email
< asianbioethics@yahoo.co.nz >.
31A1.Welcome and explanation of Tsukuba Bioethics Roundtables
Darryl Macer, Eubios Ethics Institute, Japan/New Zealand
This is the fourth Tsukuba International Bioethics Roundtable hosted by the
Eubios Ethics Institute. The earlier meetings were in 1993 (TRT1), 1996 (TRT2), and 1997 (TRT3) also in cooperation with the
University of Tsukuba. Each time themes in cross-cultural dialogue and
international bioethics were discussed, and every time the number of
participants grows, so that this year there are 140 foreigners from over 30
countries expected in the coming four days. The style is informal roundtable
discussion on short presentations, focusing on a number of themes. In 1997 the
theme was what Japan can offer to international bioethics, and was held
together with the 9th annual meeting of the Japan Association of Bioethics,
prior to the UNESCO Asian Bioethics Conference.
This year the themes cover medical ethics, theories of global bioethics,
bioethics education, environmental ethics, human reproduction, biotechnology in
general, genetics and ethics. Overall we can ask whether there are geographical
or ideological boundaries to bioethics within Asia, and between Asia and other
regions of the world. This year's meeting is held together with the
International Network on Feminist Approaches to Bioethics, who will have a day
devoted to specific feminist approaches on the 3rd November, but will also be
involved throughout the meeting. That network is one of the networks of the International
Association of Bioethics (IAB), that is the overall host of the coming 8 days
of bioethics in Japan, together with the Asian
Bioethics Association (ABA) . I personally do not think any one approach to
bioethics should be separated from others because we need an integrated
approach to cross-cultural issues - and there are many cultures within every
society. However, this view may be idealistic, and there is a need for feminine
voices. In addition I should mention the International
Union of Biological Sciences (IUBS) Bioethics Program that I direct has
been recently established to develop bioethics among biologists in all
countries of the world and this meeting will also help development of the
program. There are also coordinators of various IAB networks here in TRT4,
including especially corruption, education, and genetics. Perhaps my view that
bioethics is love of life might be quite appropriate for many, but the focus of
these roundtables is always a global view to studying how each person and each
culture may contribute to our knowledge of the total. We may have quite a
different view from the prevalent views of some cultures, like North America or
Europe that many of our guests at this meeting are not familiar with, so we
should all learn together in what some of us call the Eubios family.
31A2. How Japanese medical students understand informed consent?
Noritoshi Tanida, Hyogo College of Medicine, Japan.
Clinical practices differ among countries with different traditions and
culture. This may be true also for the notion regarding informed consent among
countries. The Japanese version of informed consent is named "setsumei
(explanation) to (and) doi (consent)", where truth disclosure is not
always necessary. I studied how medical students understood informed consent
and "setsumei to doi". Students who started to study clinical
medicine, i.e. fourth-year (from 1991 to 1994) or third-year (from 1994 to 1997),
were asked to answer to a questionnaire regarding informed consent and truth
disclosure. In 1991, 36% and 48% of students knew the words informed consent
and "setsumei to doi", respectively. The corresponding figures were
95% and 67% in 1997. The proportion of students who recognized the idea of
informed consent as patient's rights were between 0 to 4% during these years.
At the same time, students have been gaining the idea of informed consent as
"sincere setsumei to doi". "Inhomudo konsento" became a
very popular word among Japanese medical students. Many of them understood
"Inhomudo konsento" as "sincere setsumei to doi" without
recognizing patient's rights, which is also the notion of many Japanese
regarding informed consent.
31A3. Addressing treatment refusal in anorexia nervosa: application of an ethical decision-making framework
Vicki Smye, St. Paul's Hospital Vancouver, Canada
Nurses as well as other health care professionals increasingly are being
faced with complex ethical issues. This increase is due, in part, to attention
being focused on the rights of the individual. There are a number of groups of
people historically, including those with mental health problems, who have not
had their rights acknowledged. Therefore, the overall shift to recognize those
rights has been a healthy one, however, the change has not been without
potential risks and consequence. An example of this dilemma exists in the
treatment of anorexia nervosa: What to do when someone is seriously ill and
refusing to accept treatment?
Anorexia nervosa is a condition that diminishes life quality and is
potentially lethal. Naturally, those interested in the welfare of an individual
struggling with anorexia nervosa will wish to ensure that assistance is
provided, particularly at a time when there is a crisis, or risk of
deterioration and death. Yet many individuals with anorexia nervosa protest
against treatment initiatives and actively refuse treatment. How does one
determine whether it is appropriate to comply with a person's refusal to accept
treatment? When, if ever, should treatment such as feeding, medication, or
psychotherapy be imposed? If anorexia nervosa is a dangerous condition
characterized by the irrational belief that a person's weight must be driven
down, can a person holding such a belief make a critical decision whether to
accept weight-increasing treatment?
This presentation will focus on the use of an Ethical Decision-Making
Framework in the Mental Health setting as a tool for addressing the issue of
treatment refusal and as a part of the Continuous Quality Improvement (CQI)
process. The framework has application in many clinical settings and has been
used across St. Paul's Hospital, Vancouver, Canada in a number of clinical
areas. This paper will be helpful to those working on a multidisciplinary team
who face the complexities of ethical issues as part of everyday work and are
interested in the application to practice related to clinical interventions.
31A4. An integrated method of new casuistry and specified principlism to resolve ethical problems in clinical situations
Young Rhan Um, Dept. of Nursing, SoonChunHyang University, Korea
The purpose of the study was to introduce an integrated approach of
casuistry and specified Principlism in resolving ethical problems and studying
nursing ethics. In studying clinical ethics and nursing ethics, there is no
systematic research method. While nurses often experience ethical dilemmas in
practice, much of previous research on nursing ethics has focused merely on
describing existing problems. In addition, nursing ethics present theoretical
analysis and critics rather than providing specific problem solving strategies.
There is a need in clinical situations for an integrated method for resolving
specific problems. The method described here is a combination of casuistry and
specified Principlism.
Casuistry is suggested as a practical method for clinical practice. It is
characterized by a "typology of cases and the analogy as an inference
method". A case is the unit of analysis. The structure of the case is
understood as the interaction between the 'situation' and consistent moral
rules. The 'situation' is what surrounds or stands around. The moral rule is
the essence of case. An analogy is made between cases based on "the grounds,
the warrants, the theoretical backing, the modal qualifiers" identified in
particular cases. In specified Principlism, a principle is made specified by
limiting the scope, and restricting the range of a principle.
The purpose of this study was to better understand "Ethical problems
experienced by nurses in the care of terminally ill patients". A
semi-structured in-depth interview was conducted with fifteen nurses who took
care of terminally ill patients. In the first stage of the project, twenty one
cases were identified as relevant to the topic, and then were classified into a
typology of four types of ethical problems. For instance, one of these types
was the patient's refusal of care. In the second stage, ethical problems in the
case were defined, and then the case was analyzed. The researcher focused on
three ethical elements: 1) the process of reasoning, 2) ethical values, and 3)
identifiable ethical principles found inside the cases. Interpretation was
conducted synthetically by integrating the situation with the process of
analysis. The aim of the third stage of the project was to order the cases
according to the result of the interpretation and the common principles in the
cases. The first two stages describe the methodology of casuistry, and the final
stage describes the methodology of specified Principlism. The findings showed
that specification may lead to two opposing behaviors; that the most common
principles were autonomy and caring. On one hand, when the principle of
autonomy is specified; the nurse is compelled to discontinue care in order to
respect the patients' decision to refuse care; when the patient is competent.
When the principle of caring is specified; the nurse is compelled to continue
to provide care in order to preserve life. This paradox serves to emphasize why
it is so important in nursing to clarify nurses' philosophical underpinnings
and intended social mission as they face ethical decisions in clinical
practice.
31A5. Respecting the cancer patient's right to know
Jong-sik Reem, Seoul, Korea
Because my aunt, a sixty-two-year-old farmer's wife, experienced a
tremendous amount of pain, she was admitted to a hospital. She was diagnosed as
having a spinal cancer. The family thought it over and decided to manipulate
the truth. The physician accepted the family's request to withhold information
about the diagnosis and prognosis from my aunt, a competent patient. The
majority of Koreans thinks from the paternalistically motivated ground that a
patient should not be told the diagnosis of metastatic cancer. Does the
physician have the obligation not to deceive the patient who wants to know the
truth about his or her illness? As far as I know, no physician in Korea is
truthful with patients when families request that the information be withheld.
Are physicians' deceptive practices morally justifiable? Would truthful
information harm the patient? In this paper, I will attempt to show why the
family and the physician should not intentionally deceive the competent
patients and why they should respect the patients' right to know. Related to
this issue is the question of determining treatment procedures. I close my
discussion with the observation that a patient should determine the procedure
if he or she is competent.
31A6. Qualitative methods in cross-cultural health ethics research: Experiences from South-East Asia
Jens Seeberg, WHO/SEARO, (Denmark)
In recent years a number of studies have been carried out in various
countries on issues in health research, and differences have been found among
different countries in doctors' perception on ethical values. However, few
studies have provided in-depth information based on qualitative research. WHO
(SEARO) has commissioned a multicentre research project on ethical values in
the SEA Region where repeated, qualitative in-depth interviewing has been used
to identify ethical dilemmas as perceived by the doctors in everyday clinical
practice. One important intention in the adoption of this method was to obtain
more contextual information than is normally achieved in questionnaire studies.
The experiences from carrying out a multi-centre qualitative research
project simultaneously in six countries will be described, including the
training involved, the difficulties encountered in data collection, and the
analysis strategy used. Finally, the presentation will briefly discuss the
strengths and weaknesses of using qualitative interviewing in this field
compared to quantitative and other qualitative methods.
31A7. If subjective QOL is used as the criterium, there is global progress, and this progress includes the global ethical situation
Jan Bernheim, Free University of Brussels, Belgium; Ruut Veenhoven, Erasmus
University, Netherlands; and 2, Francis Heylighen, Free University of Brussels,
Belgium
This paper argues that both the relativist and the pessimist critiques of
the idea of human progress are unfounded, while agreeing that the 18th century
concept needs to be updated by a more evolutionary and holistic approach.
Progress is defined as worldwide increase in global quality of life (QOL) per
person and QOL as the aggregated perceived and expressed Gestalts of emergent
constructs about happiness by individuals. Such QOL is intrinsically
subjective, but not relative. It is constrained and to be censored only by
universal ethical imperatives. It can be reliably estimated through overall
life satisfaction questions and better
still through Anamnestic Comparative Self-Assessment (ACSA), a uniscale of QOL
using the personal life experience as an internal standard (see Rose et al. and
Bernheim and Rose, in IAB4). Thus the subjective can be objectivated and
quality can be quantified. The Rotterdam World Database of Happiness contains the normalized results of surveys asking
the one question on overall, global, life satisfaction in random samples of the
populations of 53 countries. The Northern European and Anglo-Saxon countries
report the greatest happiness, and Third World and Eastern European countries
the lowest. Also extensive objective data on social, economic and psychological
factors that correlate with QOL are available. They include health, wealth,
security, knowledge, freedom, public honesty, and equality. It is revealing to
note that most of these objective factors are closely related to universal
ethical values: the ethical values in conformity with and overlying the
indicators of happiness are beneficence, non-maleficense, autonomy and justice.
Various statistical data suggest that, worldwide, all these QOL indicators have
undergone significant improvements during the last half-century. As a
corollary, suffering can conversely be measured, and can be shown to globally
be decreasing.
Taken together, these data give a strong support to the thesis that progress
objectively occurs and that progress also encompasses the ethical state of the
world. Some down-sides of contemporary evolution, such as pollution and the
increased pace of life are discussed, but it is concluded that they can be
tackled without really endangering global progress. The anxiety that they
engender is unfortunately amplified by a "bad news" bias in the
media, which on the other hand also reflects humanity's novel intolerance for
suffering. It is finally argued that progress is a necessary component of
evolution, which is fueled by the mechanisms of natural selection, knowledge
growth and virtuous cycles.
31A8. 'Respect for autonomy' in Confucius' ethics
Daniel Fu-Chang Tsai, National Taiwan University Hospital, Taiwan and Centre
for Social Ethics and Policy, University of Manchester, UK
The concept of autonomy has assumed a constituent part in contemporary moral
and political philosophy as well as in bioethics. Some bioethicists identified
the principle of respect for autonomy (PRA) as an absolute value that trumps
all others, the side constraint, and the 'supreme principle' with
nonmaleficence, benevolence and justice as its subordinate principles. The
others, however, questioned the primacy of PRA since health, well being and
security, which are particularly the fundamental concern of medicine, can be
the competing values to and override autonomy. This paper examines the concepts
of autonomy and autonomous person in Confucius' ethics with a view to verifying
PRAs, plausibility and applicability to this influential Chinese moral
philosophy on which ancient Chinese medical ethics were founded. The author
identifies the characters of 'hsin', 'gong', 'jing' and 'jen' in Confucius'
ethics as compatible to many correspondent virtues to PRA such as trustfulness,
truthfulness, respectfulness, veracity and humanness. Confucius' theory of the
morally ideal person, 'chun-tze' (the superior man), which entails the
characters of self-activation, self-cultivation, self-reliance, moral
authenticity and dignity of person, interprets the concept of autonomous person
comprehensively and thoroughly. However, this Confucian person, who knows
himself as 'an individual in relationships' and is characterized by 'moral
self-cultivation and an altruistic commitment towards society (i.e. sagely
within and kingly without)', is very different from the post-enlightenment
Western concept of seeing persons as rational, self-conscious individuals who
have liberty and equality to choose for himself. This consequently draws major
distinctions in the interpretation and application of PRA, despite the fact
that the concept of chun-tze embraces the idea of the autonomous person
perfectly well.
31A9. Lessons from the attitudes to persons with AIDS in Asia
Makina Kato and Darryl Macer, University of Tsukuba, Japan
AIDS is one of the diseases that people dread the most at present, though
people's attitudes to patients with AIDS, as for other diseases, vary widely.
We would like to talk about research on people's attitudes to persons infected
with HIV and AIDS patients. There are several ways to examine these attitudes,
for example, face-to-face or telephone, interviews, written surveys, recording
experiences of people with HIV, legal cases of discrimination, pretending to
have HIV and seeing people's reactions, to mention just a few.
The International Bioethics Survey was performed in 1993 and one of the 32
open questions that was included was what people thought of persons infected
with HIV or had AIDS (Macer, 1994). By examining keywords and concepts we
categorized the comments to this question by public and students from these
countries, Australia (A N=296), Hong Kong (HK N=94), India (I N=700), Israel
(Is N=30), Japan (J N=610), New Zealand (NZ N=308), the Philippines (P N=131),
Singapore (S N=209). In 1993 the comments had been categorized, so our purpose
here was to explore more deeply the negative attitudes towards these persons.
Because of incomplete translations of Russian and Thai comments their responses
could not be reexamined in this way.
The keywords used to explore negative attitudes were: deserve/serve/ask for,
fruit, fault, punish, sin, God, ethic, moral, promiscuous/promiscuity, loose,
prostitution, homosexual/gay, drug/needle, innocent. In the paper some examples
of comments for each category will be presented, and comparisons will be made,
discussing what we can learn from this descriptive bioethics methodology.
31A10. Turkish women and medical ethics
Serap Sahinoglu Pelin, Ankara University, Turkey
Discussing the above subject, in my opinion, develops from two basic
necessities. One of these being Turkish women and especially their relationship
with medicine. While the other is related with medical ethics and its
relationship with women's problems. Generally thinking of Turkish women and
medicine leads us to two sets of women. In the first set, we have women doctors
or rather, female health personnel and in the second one we find females who
benefit from doctors or health personnel. Considering these two, we can see
some actions resembling each. The women movements which began in other parts of
the world in mid-19th century among Turkish women. However, the part reflecting
medicine, as far as the said developments were concerned, had to wait until the
1920. In 1922, ten young females were admitted to the medical faculty for the
very first time. Interestingly, this period coincided with the time a new and
modern Turkey, under the leadership of M. Kemal Ataturk, was being founded. In
the second set, ethical problems encountered in medicine by women due to their
gender, will be considered, which will be the focus of this paper. From the
view point of ethical problems in medicine, an attempt will be made to present
such problems as abortion, assisted reproductive technologies and sex
discrimination against women within a general framework.
31A11. A minor as life organ donor: Ethical, legal and medical perspectives
R. R. Kishore, Ministry of Health and Welfare, India
The minor has been treated all along as an incapacitated individual for the
purpose of consensual rights, imparting him/her a great deal of vulnerability
and subjugation in the matter of medical decisions. In the realm of legal
generalism there seems to be no difference between a neonate and an adolescent
in spite of grossly different biological and socio-economic dimensions. In
certain areas like organ donation, involving major surgical intervention on a
healthy individual with no therapeutic gain, the parental authority may assume
alarming proportions of subjectivism, if not adequately regulated. In this
context minor constitutes a highly vulnerable segment of society in the matter
of organ donation. The growing scarcity of human organs and tissues has created
a milieu in which the minor's dependent status and legal incompetence can be
easily subjected to extraneous pressures. Despite these express and inherent
possibilities of the minors exploitation many jurisdictions do not have
adequate legislative provisions to govern the process of organ donation by the
minor, although there have been substantial recommendations from the Law
Commission of UK and also by the Law Reforms Commission of Canada emphasizing
the need to subject the minors organ donation to the approval of a specially
constituted authority. The circumstances contemplate evolution of distinct
ethical formulations and matching legislative response in order to ensure
functional autonomy to this segment of society. In this paper I have endeavored
to examine the subject of organ donation from living minors in a global
context, from multiple angles, and have drawn certain conclusions which may be
helpful in the development of a suitable legal technology in this regard.
31A12. Beyond the conventional dichotomy/dualism: Occidental value and
Oriental value
Kaori Sasaki, University of Lancaster, UK
This paper will examine, in terms of culture, imperialism and
internal-Orientalism, the power relations embedded within the new USA
originated, scientific / practical / philosophical / ideological knowledge,
namely one form of "bioethics". Adopting knowledge (see Foucault) of
US-style bioethics and modern clinical medicine in the especially so-called
East, has imposed hegemonic definitions on native perception, including its
lore and custom, of illness, life and death. This has been the case despite the
good faith in introducing these technologies. This involvement may bring, or
have brought about already, not only a ravage of original symbolic system, but
also political struggling to define own cultural value, as a social reaction
against the lack of a cultural quintessence. Yet this instituting cultural
identity often advocate an "original" culture which (almost) never
really existed, but was "discovered" by the Occident within
(cultural) colonial relations (i.e. Orientalism, Said 1978). In short, the
alternative voice gives rise to the risk of a reproduction of Orientalism by
Oriental people themselves (i.e. internal-Orientalism, Breckenridge & van
der Veer 1993). For example, Japanese bioethics maintains the conflict between
the West (i.e. enlightenment & development: c.f. Orientalism) and the East
(i.e. so-called traditions formed by social-evolutionary standpoints, inferring
virtue: c.f. internal-Orientalism). The conceptual frameworks of these were
established by the same background, the cultural imperialism perspective,
Orientalism. Such discourse of the East-West dichotomy can be found today in
many (political) voices from so-called East (for example, the Iranian Islamic
Revolution). Thus, global bioethics will contain problematic politics if it
remains within this conventional setting.
This paper will aim to suggest alternative method of global bioethics,
beyond the cliche of the dichotomy between the dominance West and the primitive
East, that is, beyond the current stale framework.
31A13. Is defining death a biological or cultural matter?
John P. Lizza, Kutztown University, USA
In the debate over the definition of death, many bioethicists (e.g. Bernat,
Culver, Gert, Taylor) assume that death is fundamentally a biological phenomena
and attempt to reduce the matter of defining death to a clinical or biological
decision. I argue that this assumption and strategy are fundamental mistakes in
coming to terms with individuals who have lost all brain function or the
capacity for consciousness. Moreover, this assumption and strategy have
sterilized the debate over the definition of death from its ontological and
ethical complexities. I suggest that the problem of defining death has
persisted because we have been unable to reconcile a strictly biological
definition of human or personal death with views about humanity and personhood
that are not strictly biological.
31A14. Issues to be considered in the formulation of a code of ethics for members of the Philippine Health Social Science Association (PHSSA)
Lourdesita S. Chan, presenting for Rosena D. Sanchez, Ateneo Task Force on
Reproductive Health, Gender and Sexuality, Ateneo de Davao University, the
Philippines
This paper has three objectives. First, to present ethical issues/dilemmas
and how they should be addressed. Second, to present issues or topics contained
in existing codes. Third, to propose a code of research ethics for members of
the PHSSA. Conduct of regional consultations, peer consultations, and review of
related documents were used to gather data. Some of the ethical concerns raised
are informed consent, confidentiality, and privacy. There exist various codes
of ethics from national and international sources tackling various dimensions
of these issues. However, due to continuing experiences that blatantly defy
these provisions, there is need for evaluation and re-formulation of a code to
serve as an ethical guide for social science health researches in the
Philippines.
This paper proposes that the envisioned code include two themes: 1)
responsibilities to participants of research, and 2) responsibilities to the
community, colleagues and funding agencies. Elaboration of each theme is
provided. The recommended guidelines for all research teams is to proceed from
the fundamental principles of "respect for person,"
"beneficence," "non- malifecence" and "justice".
2pm-6pm Is Bioethics Love of Life? Theories of Bioethics
31B1. Theories of bioethics
Robert Veatch, Director, Kennedy Institute of Ethics, USA
A theory of biomedical ethics is a systematic account of ethical questions
in the medical sphere. These may include professionally or lay articulated
theories and describe the moral character and conduct of both health
professionals and lay people.
Five central questions are addressed: (1) What is the metaethic of the
theory?, (2) What Is the value theory?, (3) What counts as virtue?, (4) What
are the principles of right conduct?, and (5) What is the relation between
principles and cases? Looking at these questions cross-culturally, there is
little possibility of convergence or agreement about the metaethics of
bioethical theory and theories of value. They include very different virtues.
Principles relate differently to specific cases.
The real hope for cross-cultural agreement is in the principles of right
action. Considerable convergence occurs around a small set of principles that
include utility, veracity, fidelity to promises, avoiding killing, justice, and
autonomy. Sometimes these principles are organized differently and some of them
may be considered derivative from others. Some theories may omit one or more,
but enough similarity exists to permit cross-cultural conversation.
The presentation will end with observations on the place of love in bioethical theory. Love cannot play a role in
metaethics or in relating principles to cases. It may play a role in value
theory, but merely if it is taken as synonym for value. Here it is "love of things" that is at
stake. Love cannot play a role in action theory since it is contentless in
behavioral guidance. Love is a virtue. Moreover, it is dominant primarily in
Christian ethical theory. It is not a primary virtue in other major bioethical
systems. It may be important in health care in certain special small communities,
but cannot provide action guidance in medicine among strangers and cannot even
be agreed upon as the premier virtue.
31B2. Bioethics is love of life
Darryl Macer, University of Tsukuba, Japan
In this paper I will introduce the alternative language for bioethics
outlined in the book Bioethics is Love of Life, arguing that love is a universal virtue, and principle of bioethics.
I will argue that love is not only the highest good, but is a normative
principle. There are a set of principles or ideals which people use as a common
ground for bioethics, or which at least have been suggested to be the key ones.
They include the autonomy of individuals to make choices, while respecting the
choices of others, justice. In all things we do, the ideal is to avoiding doing
harm, and try to do good. I will argue these four principles can be summarized
by the word love, as self-love, love of others, loving life and loving good.
Other terms may also stem from these ideals, such as human rights, animal
rights, stewardship, harmony, but in the end these terms also come from love.
We all may agree love is dominant in our mind, but how do we extend an
emotion, to a system to analyze our decisions? Other questions we could discuss
include the boundaries to love, love for oneself, other people, animals, nature
or all of life? How much "Love of our own life" is ethical,
considering autonomy, selfishness and altruism? Love of oneself can also be
called autonomy by some and selfishness by others, can we separate them? We can
look at definitions of love that stretch across species boundaries. Love
preoccupies the human mind, and it would be naive of Homo sapiens to
think it suddenly appeared overnight in our species. I argue that helping
another species may be the least ambiguous sign of an all-giving love above the
shadow of selfish genes. This concept should not be unfamiliar to many, who
live with pets of other species, but is there something deeper than personal
companionship? How to we judge what is the greatest good for the greatest
number, the action which will produce the most love? The values that will be
regarded as good need to be defined. Looking among cultures the value that
seems premier is life itself, and its preservation, therefore the conclusion
that bioethics is love of life.
The inner motivation and strength for ethical behaviour comes from love.
Joseph Fletcher (1966) in Situation Ethics
said love was the premier principle, and we should use case-based decision
making to solve problems, always acting in love. There was strong reaction to
that book and the ideas, especially among those in Christian ethics. It was
called a new morality, and also an attempt at democratization of theology;
making theological ethics understandable to all. Fletcher called love active
goodwill toward the neighbour, calculating the best for the neighbour and it
was not the same as emotional love. Fletcher divided decision-making into three
basic approaches, 1. antinomians, who reject rules as well as general
principles of morality; 2. legalists, who think that some moral rules are
absolute and inviolable no matter what the circumstances, and 3. situationists,
who lie between, rejecting absolute moral rules but finding general moral
principles to be helpful.
The book The Gift Relationship by
Richard Titmuss took the example of donating blood and called for a general
social philosophy of giving in society, which he called creative altruism.
Another book exploring love as a basis for medical ethics is Moderated
Love of Alastair Campbell (1984). In
attempting to define love, Campbell includes brotherly love or philia
(friendship based on mutual understanding and respect) and agape (concern for
all humankind). Nurses have been associated more with the image of an Angel of
Mercy, or of the care expressed in Motherly love and especially companionship.
Love in social work is expressed as hopefulness, helping the depressed.
While situationalism may be more consistent as a theory of decision-making,
there is still a need for a minimum standard to protect the weak. What is
striking is that given all the popular support for the concept of love, why it
is not the principle seen in textbooks of bioethics? I would suggest several
reasons for this. First, the problem with case-by-case and situation ethics is
that it is difficult to judge which is the best course of action in practice.
However, this is not so obvious under other theories of bioethics as those
authors would like us to believe. I would suggest that academics like to have a
monopoly on prescriptive bioethics.
31B3. Rediscovering virtue in bioethics
Alastair V. Campbell, Centre for Ethics in Medicine, University of Bristol,
UK
Too much of the literature of bioethics has focused on the dilemmas of acute
medicine, giving the false impression that most of health care proceeds through
dramatic decision making in life or death situations. In fact, for the vast
majority of patients, the issues are ongoing ones with no obvious resolution
through a single decision. So we need a re-orientation that deals first and
foremost with chronic illness and its challenges to the endurance and
creativity of those who suffer it. The questions raised by chronic illness
raise questions about the adequacy of the dominant theories of contemporary
bioethics and provide a natural entree for the theories of virtue ethics.
In this paper I shall describe the theoretical background to a project under
the European Commission BIOMED programme, of which I am the coordinator, which
is entitled "Virtues and Chronic Illness". This project is designed
to offer fresh insights into how an alternative approach to medical ethics can
give a better understanding of the problems faced by the chronically ill. We
have selected four conditions in which the main issue is not simply a treatment
one, but a question of the patient's capacity to cope. In such situations, the
doctor may well play a subsidiary role to that of the patient, for, the main
question to be resolved is that of the patient's ability to find a sense of
value in an ongoing battle with pain and disability. We are, therefore, not
interested in virtuous doctors, but in virtuous patients! Researchers in the
Centre for Ethics in Medicine, Bristol, UK, will work with two groups of
patients: women with endometriosis (which causes chronic pelvic pain and
creates major problems with fertility) and men and women with osteoarthritis (a
degenerative process affecting the joints, which is the commonest cause of pain
and disability in older people). In the Department of Ethics, Philosophy and
History of Medicine, Nijmegen, Netherlands, patients undergoing haemodialysis
for end stage renal disease will be studied. Haemodialysis is an effective
lifesaving treatment, but it has major physical and psychological disadvantages
which lead to a discontinuation rate in nine percent of patients. In the
Psychoanalytic Institute for Social Research, Rome, Italy the ongoing problems
faced by patients with Affective (Mood) Disorders will be the focus of
research. Disorders of this kind are among the most common of all chronic
illnesses, with depression alone affecting some 12 percent of women and 8
percent of men. To assist in the theoretical analysis and practical
implementation of the empirical work the researchers will be advised by patient
representatives and consumer groups, and will also use the expertise of two
other Centres, the Department of Medical Philosophy and Clinical Theory at the
University of Copenhagen, Denmark and the Centre for Applied Ethics, University
of Wales, Cardiff, UK.
Since the research project is currently at the start-up phase, I will not
discuss the detail of any of the nominated chronic conditions. This would be
premature, when no empirical research involving the patients themselves has
been carried out. Instead I shall concentrate on explaining the conceptual
relationship between virtue and responsibility for health as this affects the
actions of both patients and health professionals involved with chronic
illness.
31B4. Is bioethics love of life? An African view-point
Godfrey Tangwa, Cameroon
In his recent book, Bioethics Is Love Of Life: An Alternative Textbook, (Eubios Ethics Institute, 1998), Darryl Macer
suggests that 'love of life' is 'the simplest and most all encompassing
definition of Bioethics'. Macer does make a very good case for his way of
looking at things. But an African who thoroughly agrees with him is more likely
to say that Bioethics is like love of life rather than that it is love of life.
The resort to similes, metaphors, proverbs, parables etc. by Africans in
expressing views, beliefs, convictions etc., has deep epistemological and
didactic foundations.
I would prefer to say that Bioethics is RESPECT or REVERENCE FOR life rather
than LOVE OF life. Love seems to me to be too complex, generic and diffuse a
concept, and one with too many problematic associations and connotations, to
conveniently and economically carry our characterization of Bioethics. What I
am looking for in my attempt to describe Bioethics is a concept that would
accommodate at one and the same time my love of crickets and termites, my
indifference to glow-worms and butterflies, my fear of snakes and scorpions and
my aversion towards vultures and chameleons. It seems to me that RESPECT and
REVERENCE would do this better than LOVE even though it could be argued that
the former are included in the latter.
In global Bioethics, however, it is less important to agree on a description
of Bioethics than, what is much more important, on the ethical concerns and
imperatives that underlie it.
31B6. The importance of love in ancient Indian biomedical ethics
Sunil K. Pandya, Jaslok Hospital & Research Centre, India
The fundamental Hindu belief that all living beings are manifestations of
the same universal spirit (Brahman or God) make it mandatory for all of us to
treat all forms of life with love and respect. This belief also engenders the
spirit of daya or compassion. The principle of ahimsa, so ardently championed
by Mahatma Gandhi, demands that each of us so acts that all other living beings
will feel safe with us. Hindu epics emphasize the Golden Rule.
Legend has it that ancient Indian medicine developed from the principles of
Ayurveda revealed by the gods to a representative of sages who pleaded on
behalf of suffering humanity. The classic Ayurvedic texts - the Caraka and
Susruta Samhitas - demand the qualities of nobility, compassion, dedication and
purity of the medical teacher and student. The injunction, "Thou shouldst
always seek the good of all living creatures." is encountered again and
again.
A Hindu couplet sums it all up: "May all be at ease; may all be
sinless; may all experience happiness; may none experience suffering."
31B9. Can love be a language of bioethics?
Ole Doering, Institute of Asian Affairs, Germany
Among the approaches to 'What Bioethics really is?', a recent one by Darryl
Macer is exploring the impact of the ancient and ever new theme of 'Love'.
Macer explicitly acknowledges the merits of 'Love' for an integrated theory of
bioethics. He calls it the missing element in such a theory. Its numerous
personal and subjective interpretations and manifestations notwithstanding,
'Love' is not exactly a new concept in ethical and practical thinking. This
paper will dwell upon the Chinese philosopher Mo Di (480-397) whose teachings
of social politics and morals are circulating around the notion of 'Universal
Love', or 'Co-Love' (Jian ai), which includes patterns of astonishing
familiarity to the present state of the bioethics discussion, namely in
combining 'Love' with utilitarianism. This concept will be discussed and
compared with Macer's view. The paper will argue that 'Love' in a certain
understanding indeed may be suitable to become one of the most moving
foundations and motivations in bioethics. Its richness and power is, however,
at the same time its limiting factor as it comes to the concepts and the
language of bioethics. 'Love', as a normative concept is not only vague, but it
can be misleading, can be abused, and is regularly misunderstood, which, in
effect, makes it an unreliable and even dangerous principle. We are in
desperate need of a common language in bioethics, as the field of vital
relevance for mankind. The paradox conclusion of this paper is that, exactly
from an attitude of 'Love', we should reject 'Love', not as the highest good,
but as a normative principle in the language of bioethics.
31B10. The meaning of life as a metaprinciple of bioethics (is there really any difference between religious and secular bioethics?)
Frank J. Leavitt, Ben Gurion University of the Negev, Israel
It is argued that none of the four well-known principles of bioethics is
clinically applicable unless there is a prior discussion of the meaning of
life. This is not to suggest that I intend to tell the audience what the
meaning of life is. Indeed it is important to bioethics that we have the
humility to admit that we don't really know what life is all about, and that
life might have a meaning of which we are all unaware. The concept of the
meaning of life is a fundamental concept which cannot be defined but can be
illustrated. One way to illustrate it is by saying what it is not. Meaning of
life is not quality of life, nor is sanctity of life the same thing as the
meaning of life.
The concept of the meaning of life can also be illustrated by discussing its
three levels: l) The meaning of one's life in one's own eyes; 2) The meaning of
one's life in the eyes of others; and 3) The meaning of one's life with respect
to transcendental matters, i.e. God, upper worlds and beings, and the
afterlife. This third level may be discussed whether or not one believes that
transcendental matters exist. For even the statement that there is no God,
there are no higher beings and there is no afterlife is of clinical relevance
with respect to decisions as to whether or not to continue treatment of a dying
patient.
31B11. Love and medical ethics in Iran
Alireza Bagheri, Center for Medical Ethics, Iran
During the whole history of human being, the concept of love has neither
been alien nor neglected. In this long period, different nations and various
religious have used this concept with slight variations in its meaning. We can
claim that the concept of love, like that of worshipping, has provoked a common
sensation and perception between different nations. It's true that Islamic
society based on Islamic teaching is very familiar with this concept. In this
paper after a brief presentation of love in Persian literature, the concept of
love in Islamic Gnosticism will be discussed. Reference has been made to the
division of love into, True love and Metaphoric love by Plato, and also the
views of Islamic Gnostics on this topic. Following this, the impression of
love, and the present situation of Medical Ethics in Iran will be discussed.
31B12. Kagandahang loob: Love in Philippine bioethics
Leonardo de Castro, University of Philippines, Philippines
Kagandahang loob is a central concept in Philippine ethical discourse. As an
expression of good will, it is often manifested in actions beneficial to
others. More importantly, however, such actions must be characterized by
positive feelings towards the intended beneficiaries. Hence, kagandahang loob
can be seen as an expression of love. To convey kagandahang loob is to give part
of oneself voluntarily, without consideration of reciprocity or reward, and
while motivated by positive feelings towards others. Ordinary language analysis
serves to clarify the significance of these features not only for
characterizing the concept of kagandahang loob, but also for defining an
indigenous concept of love. Comparison with a parallel concept such as
beneficence may serve to bring out characteristic features of kagandahang loob.
Taking cognizance of these features in Philippine bioethical discourse enables
one properly to contextualize many of the issues that arise as well as the
solutions that emerge. For instance, there are significant differences between
organ donation perceived as an act of kagandahang loob and organ donation
perceived as an act of beneficence. Our appreciation of the act of volunteering
to be a subject for experimentation could similarly be enriched if kagandahang
loob were to provide the framework for analysis.
31B13. Love: A basis of ethical principles in Thai bioethics
Pinit Ratanakul, Mahidol University, Thailand
Thai bioethics is inseparable from moral and religious values and precepts.
All these precepts are based on the Buddhist comprehensive concept of love.
Among them "loving kindness" is the most important ethical principle
that can be used as an action guide in ethical decision-making in medical
practice. Accordingly when a difficult decision is faced a physician should
always ask himself a simple question. What is the loving kindest act to do, all
relevant matters considered?
"Loving kindness" is sensitivity and caring. In the case of
terminal patients this means alleviating pain, if it is beyond our capacity to
cure, and providing loving care to them as well as allowing them to die with
dignity. In the area of allocation of limited resources "loving
kindness" is not concerned with the provision of health care to particular
individuals, but with finding a fair distribution of these resources for all.
Similarly in the case of seriously defective newborns "loving
kindness" is provided for all concerned and involves balancing the welfare
of more than a single individual. In the area of genetics the principle of
"loving kindness" is extended to the not-yet borns. Thus the
individuals known to be at risk as carriers of genetic defects will be advised
to be tested before marriage. In the same manner all known carriers are also
encouraged to seek other ways to have children, if they desire.
1 November
9am-1pm Bioethics Education (cosponsored by IUBS)
1A1. Opinion survey on bioethics education in India
Jayapaul Azariah, Anbu Arivkkodi, Dhanapriya,R, Krishnika, A, Minakshi, Baby
Flankit Vittabai, University of Madras, India
A twenty two day long refresher course entitled " Environment,
Biodiversity and Bioethics" was conducted for professors in colleges
affiliated to the University of Madras. Among the 50 participants, there were
16, 10, 13, 8 and 3 professors belonging to the disciplines of zoology, botany,
chemistry, physics and biochemistry respectively. There were Hindus (32),
Christians (13) and Muslims (5). Female participants (32) were more than the
males (18). Lectures were arranged involving all-India-experts on various
themes. Such a transdisciplinary approach and an assemblage of participants of
different disciplines provided an opportunity to access the impact of bioethics
education on their world views on the above themes. In order to achieve this
objective, a questionnaire with a five point grading (prepared after Macer
1994), was administered before and after the course containing the following
sections (i) Definitions/ word / picture description of a theme (ii) general
(iii) cloning (iv) AIDS (v) gene therapy (vi) Organ transplantation (vii)
environmental ethics. The responses of the educated respondents (ER) were
tabulated and the frequency distribution was assessed to study the impact of
bioethics education in changing perceptions and opinions.
Over the TRT4/IAB4 conference a series of papers from this study will be
presented. In this paper the focus is on the impact of education on the
perception of general bioethical issues. In order to understand the perception
of academics of Tamil Nadu a set of 27 questions and open statements were
administered. The survey suggested that while bioethics perception may have
universal outlook it is shaped by local culture and customs and world views.
It is known that, in India, religion was the base from which health was
assured to the community. In a typical Hindu home it is in the kitchen where
the pictures of gods will be kept so that health food can be prepared. Where
the gods reside, that place can afford to be kept dirty. However, 56% in this
survey considered health as a non religious word. After discussion there was
only a marginal reduction (51%). The strongly agreed group showed an increase
from 6 to 15%. The community has shifted from its ancient religious moorings.
However, more considered that religion is very important in their daily life
(72% to 84%) after the course of instruction. At first 22% of respondents said
religion was "Not important", after it was reduced to 8%, suggesting
thereby that the community is inclined to religion and that education can
either strength or alter one's opinion.
Overall, 99% were in favour of bioethics education to impart the fundamental
values of life. The Indian cultural scenario is changing and the community is
facing a dilemma in certain medical problems. The question of women's right to
life and abortion is continuing to be an deep ethical problem since there was a
marked change in the strongly agree (from 20 to 8%) and disagree (14 to 20%)
categories. A sharp increase (2 to 17%) may indicate that this ethical area has
not only a global dimension but also a deep regional ethical dilemma. Surely
any educational reforms must be very carefully done. They strongly agreed that
foetus has a right to live (80% 82%). The survey revealed that the Indian
culture which is gradually shifting towards western culture, still deeply holds
the moral values of Indian culture. The paper discusses the value conflict
situations and areas that are amenable to reshaping through education.
It is necessary to bring out major educational reform by restructuring the
first degree course. Recent biological research has extended our limitless
knowledge horizon. Bioethical values may be formed by applying a three tier
approach name]y (i) imparting basic knowledge (ii) personality development and
(iii) practical utility of acquired knowledge. At the same time there is a need
to place emphasis on the development of necessary basic skills and practical
capabilities for jobs. The following three elements in bioethics curriculum
need to considered: (i) classical spiritualism (ii) reconstruction of basic
attitudes and values and (iii) communication of acquired awareness and skill.
The curriculum should be balanced to include both broad and narrow based, pure
and applied science, learner centered and learning oriented, theoretical and
practical aspects, Indian and foreign (cross cultural) and transdisciplinary.
If education is the heart of bioethics then curriculum development is the most
powerful level in decision making in gray areas that has risen due to recent
biological research.
1A2. Bioethics education network in Japanese high schools
Hiroaki Koizumi (1), Izumi Ohtani (2), * Yukiko Asada (3), Darryl Macer (3)
and colleagues of BEN; 1. Kojimachi Girls High School, 2. Kokubunnji High
School; Tokyo, Japan; 3. Institute of
Biological Sciences, University of Tsukuba, Japan
The International Bioethics Education Survey conducted in 1993 found over
80% of the biology and social studies teachers from Japanese high schools who
responded thought bioethics education is needed. In response to call from
teachers to begin or deepen bioethics education from contact since that time
led to a High School Bioethics Education Network being formed in 1996 (Asada
& Macer, TRT3, JAB9, ABC'97). To date over 60 teachers from all over Japan
have joined the network. The network has held 11 meetings since the end of 1996,
and 15-20 teachers participate each time. At each meeting different teachers
talk, from either biology or social studies backgrounds. The results of these
meetings, and the potential for this activity to promote bioethics education in
this and other settings, for example among groups of different ages, and within
society will be discussed. The personal experiences of two teacher members of
this network will be shared, as examples of the themes we discuss.
1A3. Biocult survey in Japan and New Zealand, and comparisons to Europe
Hiroko Obata, Darryl Macer, University of Tsukuba, Japan, Mairi Levitt,
University of Central Lancashire, UK, Ken Daniels, University of Canterbury,
New Zealand, and Howard Bezar, Crop and Food Research, New Zealand
Biocult was the name given to a survey given to young persons between 11-18
years old in Finland, Germany, Spain and the UK in 1996 by researchers
coordinated by Mairi Levitt and Ruth Chadwick in the Centre for Professional
Ethics, University of Central Lancashire, UK (Biocult, 1996; see IAB4
abstract). This paper focuses on the results in Japan and New Zealand. Three
main age groups were selected to represent the ages when children left
different stages of schooling, as chosen in Europe, 11-12, 14-15, and 17-18 year
olds.
The students were asked many open questions, for example, "What would
you like to do when you finish at your present school/college?". In both
countries two thirds indicated further or higher education. The students were
asked, "Q. What sorts of things are you concerned about or worry about at
the moment? Write them down in the "thinking" bubbles below" (3
bubbles given). There was a major difference between NZ out (54%) and J out
(18%), reflected also in social, environment, animal and biotechnology
concerns. More Japan students expressed a concern about themselves, except for
the 11-12 year olds which was the result of opinions at one school which may
have had a more direct environmental education. Generally, in Europe more
students expressed concerns outside of themselves.
There were open questions on the advantages and disadvantages of science,
images of Nature, taking a fat-free gene, on xenotransplants, cleaning up
pollution, and improving fruit and vegetables. This survey shows that young
people can express diverse comments about biotechnology, science and
technology, and often expressed both benefits and risks in response to
different questions, although the response to the science and technology
question was not as mixed as observed in public questionnaires on specific
applications (e.g. Macer 1994).
Despite the general disagreement that we could do anything with science and
technology, about 40% said that someone (Sam) should take a fatfree drug,
suggesting a positive image of biotechnological solutions. This figure is
higher than the acceptance of gene therapy to enhance physical characteristics
in the medical student and public surveys conducted in 1993 (Macer, 1994; Macer
et al. 1995).
1A4. The Scientist, the Lawyer, the Poet, and the Comedian
Tom Buller, University of Alaska, USA
The difference in content amongst lower division undergraduate courses,
upper division, and graduate courses is reflected in the depth and breadth to
which subjects and topics are covered, and the complexity of the arguments,
ideas and experiments. These differences in content are tied to our belief that
students become more advanced the greater their familiarity with the
discipline. All of these, in turn, are based on the fact that there is a broad
consensus as to the important elements in a well-defined academic curriculum.
Similarly, we expect students taking bioethics courses to become more advanced
the greater their familiarity with the discipline, which should be reflected in
the differences in course content relative to level. However, bioethics
presents a challenge because of its relative novelty and interdisciplinary
nature: the discipline is still in the process of being defined and there is
less consensus as to its core elements. We need, therefore, to answer the
following questions: (i) What are the appropriate differences in content
amongst lower division undergraduate courses, upper division, and graduate
courses? (ii) What constitutes becoming "more advanced" in bioethics?
What development in skills, knowledge, or expertise is important? (iii) In what
ways should the curriculum accommodate students in professional programs
differently from students taking general education requirements?
In this paper I answer these questions by presenting four models of
bioethics education: Scientific; Legal; Poetic; Comedic. I argue that the most
successful model is that which recognizes that bioethics shares with
mathematics and science a pedagogical emphasis on structured learning and
skill-building, and that it shares with the humanities an emphasis on content
and argumentation. I propose the Comedic, using the classical sense of the
term, as the ideal model for a bioethics curriculum.
1A5. Bioethics and Undergraduate Biology Education
Peter Whittaker, National University of Ireland, Ireland
In undergraduate biology education, in Ireland at least, it has been
traditional practice to present information, scientific concepts and debates
without more than a passing reference to ethical considerations. The major
advances in man's ability to manipulate and exploit organisms and the
environment, demand a reappraisal of this situation. It is important, not just
to raise students consciousness of bioethical problems by providing for this by
way of an optional extra, but to ensure that consideration of bioethical issues
becomes fully integrated into all aspects of the course. Only in this way will
we ensure that future developments in biology evolve within an ethical
framework which is fully compatible with the advance of science.
1A6. Student attitudes to illness
Shinichi Shoji & Katsuko Kamiya, University of Tsukuba, Japan
An educational program "Clinical anthropology" for humanity and
bioethics to undergraduate university students has been carried out. This
program was conducted by presentation of a concrete clinical case or scene
relating to birth, aging, illness or death, presentation of typical opinions
and necessary information, free discussion in small group, reports of summary
of discussion, general discussion, then tutors present their own opinion
clearly. Student attitude to illness was analysed, so they described their own
impressions. Attitudes were very widely diverse. Through this program the
students learn that there are very varied attitude to illness among the
students.
1A8. An Ethics Exercise for Medical Students
James Dwyer, New York University, USA
In this paper I discuss an exercise in bioethics education. In my bioethics
course, I ask medical students to write about an ethical problem that they have
encountered in their clinical experience. In their responses, students describe
ethical problems they face when they work with a physician or nurse who treats
a patient disrespectfully. When they see how social and economic class affects
patient care; when they decide what to tell a patient about their status as a
student and their level of experience; when they see that a patient is
subjected to additional pain or discomfort for teaching purposes; and when they
hesitate to voice their disagreement with a resident or attending physician. I
consider the social context in which these problems arise, the ethical values
that are involved, the concerns that students feel, and their obligation to
speak up. I also consider what ethicists can contribute to this exercise. I
emphasize three points. First of all, ethicists need to provide students with a
discourse that is useful for dealing with the problems they typically
encounter. Second, since the personally experienced problems often reflect
social problems, ethicists need to help students connect their individual
problems to relevant social norms and values. Finally, ethicists need to help
students connect the issues they face to questions about virtue and
character-to questions about the kind of physicians and persons they are
becoming. In conclusion, I reflect on some of the benefits and limitations of
this exercise. By forcing students to look for ethical problems in their daily
experience, the exercise increases moral perception. By helping students to
connect their personal experience to larger questions about values and virtues,
the exercise develops moral reasoning. The exercise even encourages students to
express their ethical concerns in action. At its best, the exercise is a practice
of the self that has important social implications, but it seems limited in
that it deals only with those problems that students perceive and identify as
ethical problems.
1A9. Developing Clinical Ethical Judgment: Strategies for Clinical Bioethics Education
George Agich, Cleveland Clinic Foundation, USA
In the education of health professionals, bioethics needs to be defined not
only in terms of bioethics concepts, theories, problems, or issues, but in
terms of ethical discernment and ethical decision making as well as ethical
analysis and reflection. These skills comprise the general capacity of making
sound clinical ethical judgments. Ethical discernment, decision making,
analysis and reflection, however, needs to be developed into a capacity for
making sound practical ethical judgments. After all, clinical bioethics
addresses questions and problems in the care of particular patients and in the
management of their illnesses. Caring for patients is a complex process in
which judgment is essentially involved.
Developing sound clinical judgment is, arguably, the most important task of
medical education, but the ethical aspect of this judgment has not received
sufficient attention in bioethics education. Comparing bioethics to the basic
sciences, we can say that although acquiring sophisticated background
scientific and clinical knowledge is essential for the good practice of
medicine, one also needs a judgment seasoned by experience of a range of cases.
Without a practical, clinical judgment, the physician would be nothing more
than an academic expert in the biomedical sciences. So, too, for bioethics. One
implication of this analogy is that sound clinical ethical judgment will not be
adequately developed by relying on typical classroom or academic educational
approaches; it needs to be taught in clinical settings. Even attempts to
integrate clinical reality into classroom teaching, for example, by using a
case-based approach, cannot adequately cultivate clinical ethical judgment.
Even if the cases used involve an accurate summary of patient care problems, it
loses the dynamic element within which sound clinical judgment is needs to be
exercised and in which it is learned. Paper cases unavoidably lose the dynamic,
practical, and existential aspects of patient care, though I grant that
sophisticated case-based approaches are possible. Clinical ethical judgment of
health professionals, however, is forged not simply by learning how to handle
paper-based or other formats of "ethics" cases, but in the course of
dealing with the emergent reality of actual patient care. In this presentation,
I discuss the use of three instructional modalities to developing sound
clinical ethical judgment: unit or ward based ethics rounds, ethics
consultation, and the use of simulated patients.
1A10. Bioethics Education in Croatia
Ivan Segota and Nada Gosic, University of Rijeka, Croatia
The contents, methods, models and practice of bioethical education at the
Medical Faculty in Rijeka is described. It was the first in Croatia to include
into teaching bioethics as a separate subject. By comparing the practice of
bioethics education from The Hastings Center project in New York, the article
systematically presents the contents and presentation of lectures, seminars and
students' ethical workshops, and especially the professional levels of ethical
education as an innovation in the "Rijeka model". In conclusion, the
authors deal with the problem of evaluation of knowledge, issues regarded by
ethics with special attention. Therefore, in this part, the reader's interest
is directed toward the establishment of full communication between the wealth
of ethical contents and the wish to create dialogue amongst the subjects of the
scientific-teaching process and between the developing forms of ethical
behaviour.
1A11. The Teaching of Bioethics and the Making of a Socially Responsible Health Professional
Michael Tai, Chungshan Medical & Dental College, Taiwan
The progress of medicine in the last few decades has brought profound
changes on human life. Not only are people healthier, they actually live
longer. The role of medicine has changed from mainly caring to curing and now,
prevention. In talking about modern medical technology, Bernard Haring
suggested that medicine has to pay attention from the present to the future,
from an individual personalism of the patient-doctor relationship to a
social-collective accountability of medicine and to the whole human society. In
his words, "we are forced to take a courageous step towards an understanding
of freedom expressed in terms of social responsibility for the whole of
humanity and for the world environment." The impact of modern medicine on
human life and his society has been so profound that medical educators in the
21st century must re-design a curriculum that will respond to the new reality
it confronts.
A new understanding developed which motivated medicine to move from a simple
body-centered paradigm to a holistic approach to human health. We can see three
different paradigms: The dominant paradigm of medical science in the 20th
century is the biomedical model. A second is psychosomatic medicine, the study
of the interaction of psychosocial and biological factors in health and
disease. The biopsychosocial model considers all social, environmental and
behavioural factors are to be taken into consideration to determine the cause
of illness.
In order to respond to the new reality of medicine and to a new
understanding of health from a biopsychosocial perspective, the content of
medical education needs to be re-evaluated. The Harvard Medical School's New
Pathway model is a good example of this attempt. Medical Colleges in Taiwan had
started contemplating a new curriculum since the early 90's. A Conference on
Medical Education was convened in 1993. All deans of medical colleges in Taiwan
along with many professors and students participated in this three days
seminars to reflect on a medical education that would respond to the challenges
and needs of the new century. The purposes of this emphasis on medical humanity
can be summarized as follows:
1. to cultivate a holistic understanding of personhood
2. to enable medical students/physicians to know the human side of medicine
and the effect of environment including life style on health
3. to provide a continuing reflection on medical students/physicians
themselves as they grow in medical knowledge
4 to foster a sense of "Medicine as Vocation" in the minds of
medical students and physicians
5. to study ethical theories and their applications to clinical
decision-makings thereby enabling students/physicians to solve day-to-day
problems ethically
6..to promote a consciousness of physician's social responsibility.
Medical humanity attempts to equip students with a better understanding of
human beings so as to produce physicians of tomorrow who are not only effective
healers of diseases, but also restorers of human wholeness (a person of body,
mind and spirit) and promoter of social justice. To achieve these goals, the
National Taiwan University Medical College launched a new curriculum commencing
in 1995. The goal of introducing medical humanity courses is no other than to
instill a sense of empathy in the mind of students while training them to be
competent physician responsible to himself, his patients and to the whole
society. A socially responsible person is the one who answers the call and sees
his patients as his close friends. He acts not selfishly, but for the welfare
of the whole society. He acts in relationship to others not for making his own
goals or simply serving his obligation. He goes beyond himself to meet people
and serve the need of society. Such a socially responsible physician is what
traditional Taiwanese refers to as a superior physicians. The saying goes as
this: "A superior physician heals the ills of a nation. An ordinary
physician heals the brokenness of a person. An inferior physicians heals
disease " meaning that a physician's role is threefold, namely, to care
and cure diseases, to mend a person's brokenness and to promote justice in
society. Such a physician is a deputy-ship such as father acts for children.
Thus, he is their deputy never being an isolated individual but always
combining in himself the services of others. A superior physician is hard to
come by. Our world may have changed so much that such an expectation is
regarded as unrealistic. Yet with physicians' traditional high social image,
medical education must set a noble goal to pursue.
1A12. Corruption in Health Care: A Hungarian Analysis
Bela Blasszauer, Medical University of Pecs, Hungary
Corruption is a world wide phenomenon that occurs in every area of life. The
health care system is not an exception. Preliminary studies carried out by the
International Network on corruption in health care systems show significant
similarities in corrupt or dishonest practices. The paper gives an outline of
these phenomena and attempts to find explanation for their origin, as well as
for the causes of their prevalence. The author names and briefly analyses those
dishonest practices that are rather common and in the focus of public interest
in Hungary. Corruption has a destructive effect in any field of human endeavor,
but especially in the area of health care, where not only trust should be a
main element of human relationship, but where greed, lies, deception and alike
may result in tragic outcome. The honesty in the health care systems, on the
other hand, does not seem to receive very much interest, perhaps, because it
seems quite natural that most of the health professionals do their jobs
decently, some with obsession, while others with expected commitment and
dedication.
1A13. Ethical dilemmas in clinical work: A research base for a teaching module for South and South East Asia
Jens Seeberg, WHO, SEARO and Reidar Lie, University of Bergen, Norway -
(preliminary findings)
While it has always been recognized that practical on-the-job training forms
a very important part of medical education in terms of diagnostics and
treatment, the teaching in medical ethics has traditionally been granted little
place and been text-book oriented in many countries. There may traditionally
have been a tendency to view bioethics as an external element in comparison to
technical, clinical skills.
WHO/SEARO has supported a multicentre project which is being carried out to
develop new training modules based on research on ethical values in seven
teaching hospitals in six countries in the WHO South-East Asian Region. The
research part of this project covers identification of ethical dilemmas in
patient care (qualitative interview study), ethical values in the
doctor-patient relationship, and ethical values in resource allocation in
health care (questionnaire studies). Based on the preliminary findings, this
presentation will identify and discuss the relationship between these different
levels of analysis and discuss identified socio-cultural differences across the
participating countries of Bangladesh, India, Indonesia, Myanmar, Nepal and Sri
Lanka. (see also IAB 62D1)
1A15. The reporting of genetic engineering in the Japanese media since 1973
Satoko Hayashi & Darryl Macer, University of Tsukuba, Japan
As revealed in surveys of people's attitudes to biotechnology and genetic
engineering, the media is the major source of information on not only the facts
but also the issues associated as they are introduced into society. The media
has a large responsibility to communicate science, and scientists should also
inform people about science. The media also has a responsibility to present
balanced information, on the benefits and risks of alternative technology and
to do this independently of commercial interests. Therefore a study is being
conducted on how the media chooses and uses the information about science,
technology and the associated bioethical issues.
An International Study of Policy, Media Coverage and Public Perceptions, is
being coordinated by the Science Museum in the UK, which includes media
analysis for articles about biotechnology on newspapers and magazines. For the
Japanese media study a major newspaper, Asahi Shimbun, was chosen as the
material. The morning edition of every second day of sample years was read and
articles copied that were judged relevant to a set of about 60 key words or
concepts, related to biotechnology and genetic engineering, food and vaccine
safety, reproduction, diseases and bioethics in a broad sense. Because the
coding of articles into keyword lists by computer is not always inclusive, the
reading by eye was necessary. The years included in this study to date are:
1975, 1977, 1980, 1982, 1985, 1990, 1995. The frequency of the appearance in
the newspaper, of some of these concepts, over time will be discussed. More
detailed analysis of each article included analysis of the size, contents,
actors, location of event, benefits and usefulness, type of benefits, risks and
costs. Each article is being rated, with a judgment: negative or positive
valuation of biotechnology, and some examples will be shown.
1A16. The Gene Shop: assessing the impact of a public education facility
Mairi Levitt, University of Central Lancashire, UK
1A17. Educating women for self worth
Naomi Gale, Bar-Ilan University, Israel
'A woman, for herself, is worthless but for the group and her family, she is
the most valuable commodity'. We women must change this axiom. In traditional
societies, and in many groups within the modern societies, women are socialized
into submissive roles, programmed to think, act, behave and feel according to behavioral
patterns set out by socialization processes in order to fulfill their husband's
and children's needs. In many societies women feelings, abilities and
capabilities do not matter. The worst part is when women are programmed so
successfully into their inferior position, that they themselves become the
strongest advocate for the perpetuation of these roles and carry out the
necessary initiation ceremonies to uphold their inferior position, These
ceremonies, needless to say, keep the cultural ideology of superior-inferior
social structure. Circumcision is such a ceremony that elderly women inflict on
young girls just as these were inflicted upon them by their grandmothers to
mark the transition from childhood into womanhood . In actual fact, these ceremonies
and others rob women of their own sexuality and subordinate them to the control
of the men in the group.
This paper outlines the results of a workshop done by the researcher in
Israel within small groups of women who initially had little confidence in
themselves, and presented themselves to their families and environments as
useless and were viewed as such. It demonstrates that after a period of time it
is possible to change the makeup of these women, to make them believe in
themselves, be in touch with their own feelings, needs, abilities and
capabilities, and measure their confidence, worth and productivity not
according to the needs of others, but also to include themselves. Though the
techniques of assertiveness they learn to look into themselves, acknowledge
their needs, wishes, and health. To educate women to learn to love themselves,
without this love they will not be able to love others. But before that women
have to learn to believe in themselves, that they can do it, that they arc
worth it, that without them the world cannot function, that they arc very
important. Here their partners can contribute to this change by learning to
appreciate women as human beings, to acknowledge their contribution and, the
most important thing, to realize and internalize the importance of women to
society not on]y for themselves. If women are happy within themselves,
assertive, self confident, have self worth and are equal to others, their
contribution to society will be most positive and greater. The attempt will be
made in this paper to highlight some of the techniques and workshops that help
women change their attitude towards themselves, The use of education as a
vehicle to educate for se]f worth from an early age is crucial and fundamental.
These tasks are complicated and must be fulfilled with great care; they will
be implemented successfully only within the framework of the culture and social
structure in which these women live and function. within rationality and logic
of their culture while advocating for change (particular]y when we work with
minority groups within a multicultural systems).
1A17. Trials of teaching strategies in bioethics education in Japanese high schools (POSTER)
Takeshi Oka, Kazushi Tsuruta, & Darryl Macer, Japan
An on-going project to examine the influence of different teaching
strategies in bioethics on bioethics education in students is discussed. In
particular questions are being used on animla biotechnology, bioreactors,
xenotransplants, and cloning; and on respect for life. The progress in the
Japan High School teacher's Bioethics Education Network is also reported.
2pm-6pm Environmental Ethics
1B1. Bioscience Ethics - A New Conceptual Approach to Bioethical
Deliberation
Irina Pollard, Macquarie University, Sydney, Australia
Modern technological power over living things has irreversibly altered
long-held cultural beliefs and jolted bioethical consciousness into activity.
Arguably the biggest problems facing humankind, problems which link the
environment, health and social issues, are population growth and economic
activity. Given that we are now the ecologically dominant species in all the
world's ecosystems and given that we have manipulated the natural forces with
an intelligence unsurpassed by any other living thing, it is time that we
seriously understand the vital self-protective, self-perpetuating mechanisms
built into all natural systems. Yet, much of the debate surrounding ethical
issues arising from environmental matters has been dominated by economics and
parochial self interest with the added implication that we are living in an
unlimited open system grounded on a dualism of "Man and the
Biosphere" or "Man and Nature". A most serious short-coming in
these deliberations is that the understanding of biological interdependence can
be severely distorted or even neglected. Bioscience ethics (1) challenges the
status quo and aims to reverse convention by proposing that biological
understanding (derived directly from scientific, social and environmental perspectives)
be central to the contemporary ethical debate. Examples taken from a variety of
disciplines including stress physiology and ecology are used to illustrate ways
of how a thorough understanding of biological principles can serve as the basis
for the development of a bioethical system appropriate for the maintenance of a
healthy human society in harmony with the environment.
1. Pollard, I and Gilbert, S. Bioscience Ethics - A New Conceptual Approach
To Modern Ethical Challenges. Eubios Journal of Asian and International
Bioethics 7 (1997), 131-135.
1B2. Bhagavad Gita on the Genesis of Bioethics
Dua Kamal Kumar, Dayalbagh Educational Institute, India
One of the recommendations of the Chennai Statement of Bioethics (1997)
states, "A comparative study of religion with special reference to values
is basic to developing ethics at the grassroots level and when this can grow
steadily, shall help in eliminating unethical acts of human beings. The Bhagavad
Gita (BG) indicates not only the virtues of
an ethical person but also puts forward the solution for the genesis of
bioethics in mankind. "He who is free from malice towards all beings,
friendly and compassionate, rid of "I" and "Mine", balanced
in joy and sorrow, forgiving in nature, ever contented and mentally united with
Me, nay, who has subdued his mind, senses and reason to Me, that devotee of
Mine is dear to Me"(BG XII-13&14). Further, it states that one should
not be a source of annoyance to his fellow creatures (BG XII-15). Careers cultivate
friendships with all, with the base motive of self advancement. Enlightened is
he who has nothing to seek but everything to give. He is so compassionate that
he ever promotes the welfare of others. BG exhorts that life and actions of
unethical persons should be brought to subtle factors in his mind and
intellect. The mind feels and the intellect analyses to decide the mode of
action. The intellect verily is where the mind is. It can make hell or heaven
on earth. For attaining ethical state BG states, "Mind oscillates between
noble and base deeds. The mode of action is performed accordingly. Through
constant practice the mind can be reclaimed from baseness. The impossible can
be made possible through constant practice. Nature can be changed by nurture.
It is the most effective means (BGXII-8&9).
1B3. A bioregional perspective on global ethics
Richard Evanoff, School of International Politics, Economics and Business,
Aoyama Gakuin University, Tokyo, Japan
The presentation outlines a bioregional approach to global ethics concerned
specifically with fostering human well-being, social justice, and environmental
integrity. It offers a critique of the modernist development paradigm, which is
premised on the notion that continued economic growth will eventually help
developing countries "catch up" with the developed countries in terms
of material affluence. It is argued that this goal is not achievable because it
ignores environmental limits to growth. The current model is, furthermore, not
desirable because it fails to promote genuine human well-being, exasperates
rather than lessens social inequalities, and reduces both natural and cultural
diversity.
Rather than create a "global monoculture" on the basis of the
modernist development paradigm, it is argued that both natural and cultural
diversity can best be maintained by adopting a bioregional model of cultural
development which de-links North and South and fosters the creation of local
economies and decentralized political institutions confederated at the
appropriate levels to resolve mutual problems. The presentation proposes a
social libertarian "global ethic" based on the principle of
non-domination which, following Murray Bookchin's social ecology, advances both
a critique of hierarchy and domination and a reconstructive outlook which takes
increased participation and differentiation as its guiding norms.
1B4. Bioethics of transportation choices
Hisanori Higurashi & Darryl Macer, Institute of Biological Science,
University of Tsukuba, Japan
In modern society we have become increasingly dependent upon rapid and
autonomous transportation systems that allow us to exercise choices in how we
travel. These transportation systems cause an increasing environmental load,
and the various ways to reduce the load can be considered as ethical choices,
for example whether to shift from private cars to public transportation systems
which have less impact to the environment, or to avoid traveling. We could
consider this a problem of practical ethics, and too much autonomy leads to
more private car use.
In the 1993 International Social Science Project Survey nearly 70% in all
countries surveyed thought that automobile gases are dangerous, but despite
this, only 19% in Japan, 41% in New Zealand, and 60% in Germany said that they
had restrained themselves from the use of private cars. There seems to be
hypocrisy between the perception of a problem and failure to take action on
remediation. To examine the reasoning people have may help us reveal why people
do not act on what they say, therefore a series of interviews with members of
the public (N=305 at time of writing) was conducted in September-October 1998
in Japan.
94% agreed that we should act to prevent deterioration of the environment,
only 1% disagreed, and the major reasons were: our children's future (18%),
followed by a variety of anthropocentric reasons, with only 2% specifically
mentioned other species or nature.
In the next question, 85% said they had thought that the free use of
passenger vehicles will generate some social problem, 13% said that they had
not thought, but the major problems mentioned were exhaust gases and dirty air
(45%), traffic congestion (10%) and traffic accidents (10%), noise (6%), health
problems (7%), with a variety of other comments. In later fixed questions, 62%
said that they had experienced noise pollution from cars and motorcycles (31%
had not), and 23% said air pollution (42% had not). This compares to 50% in
Japan overall who said they had experienced either noise or air pollution in
1996 (a number similar since 1988 in Prime Minister's Office Surveys). We could
say that people were aware of the problems generated by transport systems.
Regarding the future, 45% agreed that the use of the private car should be
restricted more than at present to preserve the environment, but 25% said we
need no restrict. At present the Environment Agency and some local governments
have asked people to restrain private car use, but only 38% said they were about
to use or had used other traffic means to avoid private car use, while 60% said
they had not or would not. Comments will be discussed.
In a general questions, 23% said that they had changed their lifestyle in
significant ways to protect the environment, while 64% said they had not. This
is unchanged since the 1993 International Bioethics Survey over all of Japan,
where 28% said yes and 58% had not. However 98% said that they had sorted out
certain types of household waste for recycling, a little more than 90% who said
so in 1993. These comparisons suggest that the sample here obtained by
interviews is not too different from the general Japanese population obtained
using a mail response survey.
Overall these results leave us with the conclusion that people (1) do
perceive the environmental problem caused by transport choices, (2) they agree
that something needs to be done, but (3) a majority do not want to alter their
lifestyle so much as to reduce car use. People think the car is essential to
present day life. Recycling does not require much effort so it is well
accepted, and may be even a token to ease our conscience, but real
environmental action needs to overcome the hypocrisy revealed in this survey.
Perhaps we can take heart from the fact that 38% said they were going to reduce
transport use, we can hope this is true. It is difficult to judge wah tis
essential use of a car and what is luxury.
1B5. Is it ethical to securatize ecosystem goods and services?
Richard S. J. Weisburd, Institute of Biological Sciences, University of
Tsukuba, Japan
Anthropogenic activities are rapidly changing, depleting or eliminating many
of the natural resources (natural capital) that facilitate essential ecosystem
services, services on which our survival depends. This destruction of natural
capital is possible because our economic system treats environmental resources
as externalities. Securitization, the privatization of natural systems to
harness the power of free enterprise to protect them and market ecosystem
services, has been proposed as one solution to the problem. In some cases,
securitization works; however, concerns remain about the durability of the
protection it provides. Natural capital that provides essential services could
still be destroyed if variations in economic conditions increased the
profitability of development to exceed that of preservation. As preservation of
much natural capital is vital to people today and into the future, reliance on
economic instruments alone for its protection may be unethical.
1B6.Relationships towards animals in Japan
Ryuta Kudo and Darryl Macer, University of Tsukuba, Japan
The relationships the people have with other animals are important in
determining how they will behave to animals. In order to investigate these, a
series of interviews was conducted in July-August 1998 with both city (N=50)
and country (N=50) pet owners, farmers (N=50), people without pets in the city
(N=50) and the country (N=50), and veterinarians (N=8). Of the farmers, 62%
were cow farmers, 24% pig farmers and 14% were chicken farmers. Overall the
groups were of similar gender ratios with 36% female, and 41% were under 30
years, but only 8% were over 50 years old. Comparisons were made within these
groups, especially looking at the animals mentioned. There was no general
difference found between people in Fukushima, Ibaraki and Kagoshima, though the
response rates were higher in Kagoshima because of knowledge of local dialect,
which is more common among country people.
We found that the relationships depend on the familiarity with individuals
and species in general, and the perceived functions and roles of the animals.
The first question asked what are the most familiar kinds of animals, and
overall 42% said dogs, 23% cats, 13% cows, 6% birds, 5% pigs, 4% chickens, 3%
fish, 2% tortoise, with a few other animals also mentioned by only one or two
people. When asked what feelings they had, 50% said they liked, 16% said they
disliked and 35% said they do not feel anything. The reasons given in open
comments were placed into categories for analysis, and these were categorized
by a diverse range of feelings, in addition to the predominant response, which
was 23% who said they were cute or pretty. However, all farmers mentioned
animals make products, not seen in other groups.
Significantly more people who did not own pets said they disliked animals
(34% of non-pet owners, compared to 4% of pet owners and 2% of farmers, and no
veterinarian said they disliked animals). The most common reasons for dislike
were because they were dirty or smelly (17 persons), noisy (5 persons),
foraging in the trash (4 persons) and other reasons like general dislike (16
persons), with 14 choosing each of cats and dogs, and 6 choosing birds.
People were also asked what types of animals they would like to have a
relationship with in the future, and why they want to. The popular animals were
similar to the ones they have, with 49% saying dogs, 29% cats, other mammals
were mentioned by 8%, with horses another 2% (no one had a horse). Fish
increased to 6%, while 2% chose birds, and 1% mentioned iguanas. No one
mentioned pigs or cows! 55% of the 58 cat owners said they wanted a cat, and
50% of the 12 pig owners, but only 20% of the 105 dog owners, 18% of the 32 cow
owners, 14% of the 9 chicken owners. The 15 bird owners were split 33% each for
dogs and cats. 56% of the 13 fish owners wanted another fish, with more
preferring a cat. These data suggested that people continue to prefer the same
pet as they have. The main stated reasons for the choice were cute (23%), and
34% said because they like them very much. Other open comments will be
discussed.
The relationship should depend on the length of time they have spent
together. For example, only one person who had a relationship with a cat for
five years or more did not want a dog, but one third of those with a shorter
length of time as a relationship would like a dog. Those who had animals were
asked how long they had had the relationship, and no farmers had been with
animals for less than 2 years, and 84% had been with animals more than ten
years. They viewed the question in terms of the species, but pet owners
interpreted it more as individuals. Among pet owners, 11% had that animal less
than 1 year and 11% had had the animal more than 5 years, with most people in
between.
1B7. The noospherical restriction
R.N. Sharma, National Chemical Laboratory, India
Unlike non-human organisms, the modern Homo sapiens is distinguished
by a cultural development besides the morphological. This leads to high degree
of various specificities, of education, experience, and even physiology - the
latter depending on variables of region, nutrition, climate etc. The composite
collation of these specificities leads to uniqueness greater than merely
genetic, making the human a distinctive entity, a class apart from rest of
known creation. Recent developments in biotechnology which portend inevitable
human cloning throw open the vexed ethical dilemma of conscious psyche: replication
of the original can be limited only to the physical, the biological, not of the
personality in its fullness and totality. Uniqueness of the human individual
thus contrasts starkly with the bleakness, monotony and commonality of clones,
setting forth a natural drawback in the latter. Human cloning then, may not
subserve any meaningful purpose or goal, except the misanthropic, and evil.
This handicap of inability of cloning to replicate the individual personality,
may be called the noospherical restriction of the impending genetic revolution.
The possible genetic takeover of evolution by man becomes restricted in
substance insofar as human evolution is concerned since the Noospherical
Restriction gives no quarter to either the species or the individual, thus
effectively shutting off further inroads into a dangerous, perhaps essentially
suprahuman domain. Noospherical restriction of human evolution affirms the need
for cultural rather than biological acceleration/channelisation/direction of
the latter.
1B8. Science and scientific temper - the need of the hour
D.S.Sheriff, Vinayaka Missions, Salem, India
Science is a method adopted to the pursuit of truth. Scientific temper is
neither a collection of knowledge or facts, although it promotes knowledge: nor
is it rationalism but it promotes rational thinking. It is an attitude of mind
that calls for a particular outlook and pattern of behaviour. It involves the
acceptance of: 1) that the method or science provides a viable medium for
acquiring knowledge; 2) that human problems can be understood and solved in
terms of knowledge gained through the application of method of science; 3) that
the fullest use of the method of science in every day life and in every aspect
of human endeavour from ethics to politics and economics is essential for
ensuring human survival and progress:
The development of science and scientific thought was based on its openness,
verifiability, repeatability, predictability that could be tested. Have we
today built our scientific foundations on such openness and verifiability For a
common person such openness and verifiability of science are necessary. In the
name of classified research what goes on behind the screen eludes the knowledge
and understanding of ordinary citizens living in every part of the globe.
Therefore the sudden testing of nuclear bombs for national security and the
threat of sanctions from the western world on such nations don't seem to
justify the claim that every human has a right to live in peace whether in India
or Iceland or USA. It has revived and opened up the Pandora's box creating
uncertainties in the minds of common men.
The bombing of Japan at the close of the last world war is still troubling
the conscience of America. To quote Sir Winston Churchill- ' it would be a
mistake to suppose that the fate of Japan was settled by the atomic bomb. Her
defeat was certain before the first bomb fell and was brought about by
overwhelming maritime power. Her metropolitan army had capitulated without
striking blow. Her shipping had been destroyed.' Then the question arises what
led to the bombing of Japan ? - It is an ethical dilemma that still evades a
clear cut answer. One supposes that it could have been done to minimize
wasteful sacrifice of American lives in street or is it the irrepressible urge
of science to demonstrate itself when the ground for the demonstration was all
clear. Progress in science is based on the natural force called curiosity.
There is an equal and obverse force operating in science, the hunger for
demonstration of what has been discovered. Yet triumph in war leads to delusion
and error. Wartime crimes therefore become war time errors.
The American thesis that the nuclear weapons will provide a good umbrella
beneath which the work of peace-making can be continued led to the development
of nuclear powers and non-nuclear countries. The supposed end of cold war with
the fall of USSR and the fear of aggression made super powers to go for nuclear
non-proliferation treaty (NPT) and comprehensive test ban treaty (CTBT) to
reduce and ultimately eliminate nuclear arsenal from the map of the world. It
created an ethical dilemma. How could countries having large arsenal of nuclear
arms profess a policy of non-proliferation or nuclear arms Every country is a sovereign
nation. It has the right and obligation to protect its country from aggression.
If the policy of nuclear deterrent adopted by the super powers to maintain
peace in the world is considered to be morally correct, testing and producing
nuclear arms for a nation to protect its own security becomes justified. In
such a context is it ethical to force other countries to follow CTBT when the
major powers have stock pile of nuclear arsenal Is it ethical to play
'economic' war games to blackmail weaker nations to come under the threats of
economic super powers? Are scientists obliged to work for the whims and fancies
of the political games played by their leaders. These ethical questions need
proper answers. This could be done only with altruistic men who have the right
scientific temper to sit and chart out global policies. Every nation has an
unwritten social contract to protect the interests of common man and foster
goodwill among nations.
1B9. Environmental education in schools (POSTER)
Kouji Amemiya and Darryl Macer, University of Tsukuba, Japan
Environmental ethics is to value nature or the environment and live
sustainably in harmony with nature. There are different bases from which to
start to consider why we value the environment, including anthropocentric,
biocentric and ecocentric approaches. Whatever the basis for the protection of
nature, it is universally recognized that we have created environmental
problems with our lifestyle and products released into, and taken from, the
environment. Bioethics education is also recognized as necessary for sustaining
our common future.
In Japan the origin of modern environmental education is public safety
education, stimulated by the public health problems of the 1950s such as
Minamata disease, Yotukaiti asthma and ItaiItai disease. There is some debate
over whether public safety education was the beginning of real environmental
education or not. In 1974 the first international symposium on environmental
education was held in Tokyo, and the Ministry of Education studied the
curriculum regarding it. The Ministry of Education published three books on
Environmental Education Teaching Resources, for teachers to use in junior and
senior high schools in 1991, and for elementary school teachers in 1992, with
an example book in 1995. In the 1993 Basic Environmental Law environmental
education was mentioned.
In this poster the results of a survey of many examples of environmental
education in Japan, with comparisons to Australia, Germany, UK and USA, are
presented. The objectives of the education and methods and evaluation used are
compared. We welcome further concrete examples from other participants.
Different programs focus on awareness, knowledge, skills and participation
using a variety of methods and a wide variety of topics. Although many themes
were chosen in the examples, this research focuses on the methodology used for
teaching environmental education and environmental ethics education in schools.
1B10. Quality of life (QOL) as an individual empirical emergent construct (POSTER)
Jan Bernheim, Free University of Brussels, Belgium
That the mental, physical and social domains, each containing many
dimensions and items all contribute to QOL is uncontroversial. What is
controversial is to what extent they do this in populations, i.e. what are the
average weights of the dimensions and items. In individuals, the weights of
items are in fact unmeasurable, because they are unknown to them. Moreover, in
complex systems such as human individuals, the many dimensions and items of QOL
certainly interact, possibly also in chaotic ways. In individuals, the weights
of isolated items become for all practical purposes meaningless. As a rule,
therefore, multi-item questionnaires describe, but do not evaluate QOL, neither
in individuals nor in populations.
For example, allergic patients treated with cetirizine scored better than
placebo on all nine dimensions of the SF 36 (Bousquet et al. J. Allergy
Clin. Immunol., 98 (2) : 309-16, 1996).
Here there is no doubt that the treatment improved QOL, because it is highly
unlikely that any important dimension on which the patient groups would have
scored otherwise is missing in the SF 36. However, whether piracetam treatment of
acute stroke, which improved neurological and functional scores (De Deyn et al.
Stroke, 1997; 28 :2347-52), also
improved QOL, is plausible, but will be proven only when comprehensive QOL
measurement will have been done. And suppose in a randomized population of
metastatic solid cancer patients one would compare chemotherapy with only
palliative care, and one would, as can be expected, find no significant
differences in the survival, and chemotherapy superior for the mental domain,
but inferior for the physical comfort domain : we wouldn't know which
treatment, on aggregate, would be the better.
This is because QOL is an emergent concept, and requires a holistic
approach. Similarly, a person's QOL is an individual and emergent construct. It
can therefore be captured only by global assessment. Just as people in everyday
life, while acting under uncertainty, make global assessments all the time, so
they can seriously answer the serious question : "How have you
been?". A practical and well tolerated way to obtain such responses is
Anamnestic Comparative Self Assessment (ACSA) (Bernheim et al., J.
Psychosoc. Oncol. 1 : 25-38, 1984). The
scale-defining references of ACSA are the best and the worst periods on one's
life-experience. This has several advantages. It is empirical, and particularly
suitable for the elderly, who tend to compare the present with the past. It
confers ACSA a solemnity which may avoid trivialisation such as with the
"census effect". It also avoids cultural biases : e.g. overall QOL
scores of Americans obtained by conventional methods are thought to be inflated
because the avowal of unhappiness tends to be socially undesirable, and scores
of French deflated because recrimination is socially fashionable. Since there
is good reason to believe that extreme life events affect people similarly in
different cultures, ACSA may avoid cultural biases. The life-experience based
scale also promotes an internal rather than an external reference for QOL. This
individual pertinence may avoid the disappointing apparent insensitivity of
classical QOL instruments, with which often no difference between the QOL
distributions e.g. healthy and severely diseased populations are found. This is
counterintuitive, and largely explainable by the usage of external references :
people tend to use peer-reference rather than self-reference, i.e. to score
themselves relative to others in the group to which they belong rather than to
their own criteria.
Finally, using both a multi-item questionnaire and a global assessment allows
to by logistic regression estimate the weight of the dimensions and items, and
thus identify those whose improvement would most contribute to the QOL. Thus,
Rose ea. using ACSA, demonstrate that in different diseases, the different
dimensions of generic QOL instruments have different weights (presentation in
IAB4).
2 November (together with FAB2, cosponsored by Ford Foundation)
9am-11:15am Human Reproduction
2A1. Information sharing in families who have utilized third party
gametes - some cross-cultural considerations
Ken Daniels, University of Canterbury, New Zealand
The 'family' is a universal social institution, but cultural factors greatly
influence the ways in which families are viewed. For those persons who
experience infertility and are unable to form a family by having children,
there are important personal and social consequences. Different cultural
responses to such situations will be explored. An increasing number of persons
are utilizing gametes from third parties-those outside the marriage or
partnership bond- to enable them to form a family. The major ethical issue for
such families is the extent to which they share information between the various
involved parties, and in particular consideration of the rights and needs of
the offspring to have information about the identity of the person who
contributed gametes to their conception. Two models will be explored-the closed
and the open- and these will highlight the relationships involved. A major
dimension of these models will be the way in which health professionals have
played a critical role in determining the 'culture' that surrounds this area.
Government involvement will also be explored especially as it relates to policy
development.
2A2. Genes, contracts and families: Attitudes towards surrogate motherhood
James J. Hughes, University of Connecticut, USA
In her 1989 book, Recreating Motherhood,
Barbara Katz Rothman outlined the three social forces that she believed were
redefining parental relationships with children: patriarchy, capitalism and the
logic of technological society. Rothman applied her analysis to the case of
surrogate motherhood and the conflicts it generates when birth mothers sue for
custody of the child, as happened in the Mary Beth Whitehead case. Rothman
argued that patriarchal ideology was the root of the reflection of genetic
ties, capitalism the root of contractual obligations, and technophilia the root
of the whole endeavour. For Rothman, surrogacy represented the capitalist
commodification, patriarchal subordination and technological colonization of
women's bodies, and she contended that it should be banned. Further, she
advocated a social definition of parentalties, which places precedence of the
birth mother's ties to a child over the claims of genetic or contractual
parents. This paper tests Rothman's hypotheses on data (N=495) gathered since
1992 on attitudes towards surrogate motherhood. Patriarchal ideology is tested
as a component of overall "social liberalism/conservatism," and
capitalist ideology is tested as a component of "economic
liberalism/conservatism." Luddism/technophilia is measured by a question
about whether "some technologies should be banned." The analysis
supports Rothman's hypotheses. Luddism/technophilia, was the principal
predictor of whether respondents wanted to ban or permit surrogacy. Social
conservatives do reify genetic ties, while economic conservatives,
"libertarians," do emphasize contractual obligations. Socialand
economic liberals, such as Rothman, who reject capitalism and patriarchy,
emphasize social ties of birth mothers, and the best interests of the children,
as the basis of resolving surrogacy custody disputes. The age of the respondent
was also a predictor of attitudes. Older respondents were more likely to
emphasize the importance of social ties and children's best interests, and to
favor a ban on surrogacy. This was true even after controlling for parenthood,
and for ideological differences, which suggests there is a generation
difference which is neither accounted for by parenting experiences nor by the
greater left-liberalism of the Baby Boom generation.
2A3. Human reproduction and bioethics in Japan - Laissez faire, assisted and controlled
Shinryo N. Shinagawa, Hirosaki University, Japan
After a short introduction of population policy in Japan, five topics will
be presented focusing on bioethical issues. They are: 1) Legalization of
induced abortion and its consequences in Japan. 2) Human rights, mother's
rights and embryo rights in Japan. 3) Reproductive medicine and ART (assisted
reproductive technologies) in Japan with special attention to IVF (in vitro
fertilization) and AID (artificial insemination by donor's semen) in Japan. 4)
Contraception in Japan with particular comments to Dr. Ogino and oral
contraceptive pills. 5) Characteristics in decision-makings, especially
relating to health issues, among Japanese people: phenomenally Euro-American
but essentially and/or genetically family-centered and communal.
References: Shinagawa, S.N.: A short history of reproductive medical
problems in Japan. EJAIB 6: 158-160,
1996; Shinagawa, S.N.: What post-war Japan's philosophy hopes to offer to the
international community. Ninth Annual Meeting of Japan Association of
Bioethics. page 20, 1997.
2A4. A study of ethics about induced abortion in Korea
Young Rhan Um, SoonChunHyang University, Korea
Over one million cases (this is informal statistics) of the induced abortion
have been conducted annually in Korea. Among those cases, most of all were
illegally done, but this has not been addressed in the literature. The reasons
are selective abortion (preference for a boy), unmarried pregnancy, and
unwanted baby (a kind of birth control method). While the Korean Nurse
Association Code of Ethics presents the respect for life as one of the basic
ideology, it was not considered enough in nursing education.
The purposes of the study were to activate the debate on the issues related
to an induced abortion; to introduce the related ethical theories; and to seek
the solution of the ethical problems, which will eventually result in
establishing the morality of nursing practice. The ethical theories of an
induced abortion have traditionally addressed two extreme perspectives; the
conservatives who emphasize the sanctity of human life and the right of life
that will never ethically allow the killing of a fetus; and the liberalists who
insist the right to choice for women to control their bodies. Since these
extreme theories have not been helpful to resolve the ethical problems, a
recent trend is to modify theories from conservative and liberal perspectives.
Examples of such theories include: 1) potentiality of fetus, 2) the obligation
of women to serve their body to fetus, 3) the replacement theory, and 4) the
principle of caring. The researcher conducted in-depth interviews with 17 women
who experienced induced abortion and six cases were selected to be analyzed for
this study. The cases were analyzed and interpreted by using an integrated case
method which combined casuisty and specified principlism.
The results of this analysis reveal three types of ethical problems; 1)
conflict between a responsibility to take care of the baby to be born and
respect for the life of fetus, 2) the fear for anomaly of the fetus, and 3)
choosing induced abortion as a method of birth control. The findings also
reveal the related ethical principles for various situations; for example, the
principle of caring was described as the reason for choosing an induced
abortion by the subjects (many women thought they had to first, take care of
the children they had or other family members); the principle of the
potentiality of fetus and the obligation of the woman to serve her body was
described as the reason for considering first, the life of the fetus; and the
principle of replacement was described as the reason when women considered
their human right to choice. These ethical principles introduced in this study
provided nurses with one way to resolve the moral problems in this clinical
situation. The study also reveals the possibility of modifying the current
ethical theories by specifying the principle(s) that apply to various
situations in the clinical setting. These modified theories are more applicable
for guiding nursing actions in the future for similar clinical practice
situations.
2A5. Concepts of contraception
Peggy Battin, University of Utah, USA
Contraceptives are described according to a variety of distinctions,
"natural" vs. "artificial"; "user-controlled" vs.
"provider-controlled"; "short-acting" vs. "long-acting",
etc. etc. This paper will describe and explore these distinctions, arguing that
the most important of them is the distinction between "time-of-need"
and "automatic" contraception.
2A6. Social and clinical research of reproductive tract infections (RTIs) in two Philippine urban poor communities: Some ethical issues
Pilar Ramos-Jimenez, De La Salle University, the Philippines
The main concern of this research is to develop an awareness and
understanding of the nature of RTIs in two Philippine urban poor communities
and to enable women and men in these sites to participate in the development of
training materials for the prevention, diagnosis and management of these
infections.
The study took place in Barangay Alabang in Muntinlupa City and in Barangay
Mambaling in Cebu City in mid-1995 until February 1997. Quantitative and
qualitative methods were utilized in this research particularly a survey of 816
ever-married and 400 never-married women and men, key informant interviews with
health providers, and focus group discussions with selected ever-married and
never-married women and men. Clinical assessment of 216 consenting women in the
study sites was undertaken. The project was established within an ad hoc
advisory committee located in each study site in an effort to make the study
more relevant and culturally sensitive. Local officials, community women and
men leaders, health providers and NGO workers constituted the advisory
committee. Ethical issues confronted the staff in the process of collecting
data. These include: request of some participating mothers who experienced
domestic violence problems from the project team to falsify health assessment
outcomes to avoid sexual demands from partners; the request to perform pap
smear on women intending to commit induced abortion; disclosure of clinical
assessment results by some women leaders/members of the advisory committee to
other women without concurrence by the project team; absence of privacy of some
women during mass pap smear; what to do with data regarding risky behavior of
gay men -- FGD respondents to protect young boys/adolescents in the study
sites.
2A7. Substance-abuse and parenthood: Biological mechanisms - bioethical challenges
Irina Pollard, Macquarie University, Australia
It is hard to conceive that parents knowingly want to harm the health of
their children yet lifestyle effects resulting from ignorance, addiction or any
of a number of socioeconomic factors are still responsible for handicapping
countless potentially healthy offspring (1). The negative effects of female
recreational drug and alcohol abuse during pregnancy are well documented but
exposure prior to conception and male-mediated effects are less-well
publicized. Abnormalities in the sperm are prevalent among individuals who
consume recreational drugs and birth defects are more often linked with
paternal than with maternal DNA damage. Common preventable drug-induced adverse
outcomes of reproductive function and subsequent development include increases
in infertility rates; increases in spontaneous abortion; early fetal death;
incidence of birth defects; low infant birth weight (due to intrauterine growth
retardation and preterm births); and increased risk of neonatal intensive care
intervention. Long-term effects include defective growth, compromised
mental/behavioral development and low resistance to some illnesses, such as
cancer and depression. There is also a strong positive correlation with Sudden
Infant Death Syndrome (SIDS) and parental drug consumption. After birth, infant
drug-exposure can be continued via the breast milk, and trans-generational
effects of drug exposure have also been identified. This presentation explores
the bioethics of drug-induced disability, raises the question of poverty and
concludes that fundamental social change is needed to protect future children
without threatening parents' fundamental freedom. An ecological model of care
concentrating on lifestyle factors is also described. Such an ecological model
of care is in tune with the basic principles of BioScience ethics and
emphasizes that high quality education, health and good preconceptual/prenatal
care are fundamental human rights rather than privileges.
2A8. Revisiting personhood: Lessons from pregnancy and mothering
Vangie Bergum, University of Alberta, Canada
The need to revisit the notion of person as disembodied, rational,
autonomous, separate, isolated, and abstract (that is "generalized")
is currently being recognized, by both feminist and other scholars. In this
paper, a relational notion of personhood is developed based on phenomenological
research of women's experience of pregnancy, birth, placing for adoption, and
adoption. The lessons from pregnancy are identified as: 1) the transformational
experience of pregnancy for both woman and fetus; 2) the shifting of boundaries
of mother/child during pregnancy; 3) the process (not stages) of turning toward
the fetus/child, and 4) quickening as a moral impulse to be responsible for
both self (as mother) and the other (as child) at the same time. The mothering
experience extends these lessons by showing the strength of the relational
notion of personhood and the reality of seeing personhood as
intra/interdependent which includes both independence and dependence.
While the experience of pregnancy provides the central lessons from which a
relational notion of person can be built, the experience of mothering (birth
mothers and adoptive mothers), fathering, erotic relationships, and friendships
demonstrate that this notion can last a lifetime. This articulation of
personhood provides for further development of relational ethics for health
care.
2A9. Buddhism and reproductive technologies
Pitak Chaichareon, Mahidol University, Thailand
The new reproductive technologies have been welcomed enthusiastically by
childless couples as a means to satisfy their parenting desires. These
technologies are human interventions in the natural processes of reproduction.
In this respect there is much concern about the risks of harmful consequences
such intervention will cause to the parties involved. Questions are now being
asked : what are the boundaries of intervention? To what extent i.e. the
integrity of the natural processes of reproduction to be preserved which are
related to the values of sexual mating and family, the natural lottery of sex
selection of offspring, genetic individuality and self-identity, family linkage
and parenthood; to what extent can we intervene without destroying crucial
personal and social values we have come to cherish? These are not basically
medical questions. They are matter of moral, religious and philosophical
judgments. I will discuss how Buddhism responds to the new reproductive
technologies.
11:15am-1pm Biotechnology and Ethics
2B1. A merging of worlds - Engaging biotechnology and ethics in Scotland
Donald M.Bruce, Society, Religion and Technology Project, Church of Scotland
The future of biotechnology is inextricably bound up with the ethical
debate, with public acceptance and social values. This paper will explore the
differing assumptions, approaches, rationalities and weaknesses of both
biotechnology and ethics. This will be illustrated in the context of the work
of the Church of Scotland's unique working group on genetic engineering in
non-human species, and with such issues as swapping genes among species,
xenotransplantation, the varying perceptions of risk from genetically modified
crops and differing rationalities about genetically modified food. It is
suggested that this group could provide a model of how to bring together
disciplines often seen at odds with each other, in which both consensus and
tension play their part.
2B2. The Double Jeopardy of "Intellectual Property Rights"
Chee Khoon Chan, Universiti Sains Malaysia
July 22, 1998 was the occassion for a rally by about 600 Thai farmers, outside
the gates of the US Embassy in Bangkok. The farmers gathered there to protest
against the granting of a patent for subcontinent-derived basmati rice to
RiceTec, Inc of Texas, and the trademark jasmati for a potential hybrid between
the long-grained aromatic basmati with the equally renowned jasmine fragrant
rice of Thailand.
The Thai farmers' rally was part of a worldwide campaign to revoke the patent
which lays claim to basmati grown anywhere in the Western Hemisphere, and which
effectively claims ownership of traditional Pakistani or Indian basmati strains
when crossed with the company's proprietary lines.
The Winnipeg-based Rural Advancement Foundation International (RAFI) has
documented numerous instances of biotechnology companies and institutions
attempting to privatise public-domain indigenous knowledge and genetic
resources in the Third World, negating what is essentially an evolved,
cumulative heritage of human ecology.
In the midst of such rampant acts of biopiracy, knowledge- based corporate
entities continue their campaigns against copyright and patent “violations” in
the Third World, even as they defeat legislative attempts in the US to declare
individual genomic information to be individual, private property.
This paper will argue that "intellectual property rights" has largely
become a corporate-defined artefact of law in capitalist society, often at the
expense of individual as well as of community.
2B3. Values for bioethics and biotechnology
M.Selvanayagam and Francis P. Xavier, Loyola Institute of Frontier Energy,
Loyola College
In the context of modern biotechnological advancement the value system that
should govern human beings who are involved in today's eugenics and betterment
of life is very important and even critical. The understanding with respect to
the role of human beings needs a paradigm shift, viz. that the human being is
not the sole authority of created beings but is a steward of the universe.
Hence it is not in subjugating the universe that human beings should advance in
life, but in protecting the environment and in bringing up the universe that
human beings should attain the fullness of life. Minamata disease (Japan),
Bhopal gas tragedy (India), Chernobyl disaster (Russia), etc., are the tragic
events which call for reviewing our industrial progress and effective
management. These events bring to our attention that no one is an island and in
the global village what happens in one corner has its adverse repercussions
every where. In this context, the success of management of our environment does
largely depend on the public awareness and support of bioethics, viz. basic
concern for life and respect for the dignity of life even of lower species.
Hence educational institutions and scientific societies have to play a
constructive role in developing public concern on environmental issues,
especially the local ones that affect the day to day life of the people.
2B5. Does cloning produce unnatural persons?
Matti Hayry, University of Helsinki, Finland
Since the invention of recombinant-DNA techniques in the 1970s, the
development of modern biotechnology has presented a constant challenge to our
views of ourselves as natural and moral beings. For the last two decades the
most serious moral doubts have been related to cloning, or to be more precise,
to the production of children by copying the genetic makeup of living
individuals.
Cloning was for a long time seen as the ultimate, yet remote, threat to
humanity and moral thinking. All through the 1980s and during the first half of
the 1990s, it was customary among ethicists to condemn all cloning, and then
qualify the ban by adding that the question is academic, because the technology
for copying fully developed human beings is, for the time being, beyond our
reach. But the situation changed when Dolly the sheep, the first ever clone of
an adult mammal, trotted into the limelight in February 1997. Unless the
physiology of sheep turns out to be radically different from that of our own -
which is hard to believe - the cloning of even adult human beings will, after
all, become technologically possible in the near future. And when it does prove
possible, we ought to be ready to pass considered judgments concerning its moral
acceptability.
One intriguing argument against cloning human beings is that the individuals
produced by the technique would not be persons in the full sense of the term
due to the unnaturalness of their origin. This claim encapsulates two
intuitively felt concerns that many people share. First, cloning is not, we
somehow believe, nature's own way of making living beings, and it can therefore
be considered 'going against nature', or 'unnatural' - whatever we mean by
these expressions. Second, at least in science fiction, human clones are
depicted as individuals who lack many important characteristics of what we
believe to be the core of our humanity, or personhood. It seems, then, that
cloning should be prohibited as a threat to our true nature as persons.
But when it comes to explaining more fully what is meant by 'naturalness'
and 'personhood', and why they ought to be protected and how, we enter an
almost untrodden path. Most philosophers and ethicists have felt no need to
address the moral questions of cloning in these terms. An attempt to deal with
these questions is made in this paper.
2B6. Human Cloning: The evolution of the Israeli legislation project
Zelina Ben-Gershon and Bracha Rager, The Chief Scientist's Office, Ministry
of Health, Israel
On 27 February 1997, a Scottish group of scientists published a paper in Nature, announcing the birth of a sheep named Dolly. Dolly
was cloned by means of nuclear transfer from the somatic cell of an adult
sheep. This announcement immediately raised major fears and concerns. The idea
that some day, reproductive cloning of humans may become possible using the
same or similar technology was frightening and unacceptable. The fears were
intensified when Richard Seed, a physicist form Chicago announced that he would
clone humans for a fee. The impact of the recent developments on the global
society was remarkable, triggering debates in the media all over the world.
National and international committees were appointed, including scientists,
ethicists, geneticists and members of the public. These committees filed
reports and made recommendations.
In many countries, legislators have submitted bills to ban the cloning of
human beings by this new process. A moratorium on human cloning was more or
less uncontroversal, nonetheless the bills were introduced before anyone had a
chance to digest the implication of this new technology. Among the objections
mentioned was the fact that the cloning of human beings is a serious violation
of human rights, human respect and human dignity. In Israel, within a month of
the publication of the Dolly paper, Knesset Member Hagai Marom submitted a
private bill on the subject. The proposed legislation was discussed in the
special Committee on Scientific and Technological Research and Development of
the Knesset, with the active participation of a large group of scientists,
ethicists, rabbis, physicians, geneticists and members of the public. The
scientists expressed fears that the bill will put a stop to all cloning
experiments that use human cells, thus hindering the development of a field
that holds the promise of medical benefits. The evolution of this legislation
from the first draft to its present form will be discussed.
2B7. Expectations of biotechnology of Japanese students (POSTER)
Hiromitsu Komatsu and Darryl Macer, University of Tsukuba, Japan
Japan has been promoting the development of modern biotechnology as in other
countries, and the level of familiarity with the word is the highest in the
world, with 96% recognizing the word in surveys conducted through the 1990s. In
surveys that have been conducted by Macer and colleagues since 1991, three
quarters of the people saw benefits, but 44% had a few worries and 19% some or
a lot of worries about it. Biotechnology is like other science and technology
being associated with benefits and risks, and is associated with different
expectations. Therefore, the public should actively discuss their opinions and
participate in discussion of bioethical issues. All are challenged to make
ethical decisions, and to balance the benefits and risks of alternatives.
We can expect more dilemmas to face future citizens than now, with the
growth in possibilities brought to us by science and technology. There is a
need for students to become better able to make bioethical decisions for their
future life as adults. Bioethics education will be a support to make better
relationship between life and technology. The term "bioethical
maturity" has been used by Macer (1994) for individuals and societies that
are better at decision-making. This paper will discuss some of the results of
previous research, including the Biocult survey (see Obata, Macer & Levitt
in TRT4; and Levitt and Macer in IAB4), in which questions on expectations of
biotechnology are asked of children, for example to use a drug to reduce weight
based on the discovery of the obese genes; or to use genetics to change fruits
and vegetables. Further surveys are being conducted to examine if there are
differences in the questioning of science and technology at different ages and
in the expectations of biotechnology. In particular a focus will be on
children's interest, sense, and knowledge of biotechnology, especially food
made from genetically modified organisms (GMOs), images of media and education
about it, with comments also being sought from teachers who are involved in
bioethics education.
2pm-6pm Genetics and Ethics (cosponsored by Euroscreen)
2C1. Virtual genetic counseling
Ruth Chadwick, University of Central Lancashire, UK
Advances in genetic testing and screening raise issues about the resources
required to provide associated genetic counseling. One possibility is
counseling by CD-ROM, innovations in which are beginning to appear. This
computerized counseling technology forces a thorough consideration of the
requirements and challenges of genetic counseling into the foreground. This
paper will discuss the current position on genetic counseling in Europe. Then,
against the accepted criteria, it will be analyzed whether an interactive CD-ROM
can be considered a form of genetic counseling at all, and if so, whether it
can effectively deal with the pressing dilemmas facing the modern genetic
counselor.
2C2. What does a woman want? Considerations concerning an instance of free and informed consent for the genetic diagnosis of breast cancer
Fernanda Carneiro, Fundacio Oswaldo Cruz, Brazil
The objective of this paper is to analyze the essential elements present in
the relationship between researcher and women participating in the survey
"Breast Cancer and Genetics at the National DNA Bank", by the
FundaŤ‹o Oswaldo Cruz, Rio de Janeiro, Brazil. The right to information, one of
the conditions for practicing the bioethical principle of autonomy, assumes
ability to comprehend. To consent is to be capable of responsibility. To be
responsible is to be able to listen to the other, understand and supply an
answer.
The modern concept of natural rights presumes an individualist anthropology,
with society being the required assistance for the satisfaction of necessities,
and, in that concept, the right to information about results of a diagnostic
test. The conversation between researcher and woman is analyzed as a necessary
moment between Individual and Science.
The paper will seek to express the perception (personal awareness) of the
author while considering the dialogue between a geneticist, with a language
rooted in scientific culture, and a woman at the moment of being informed the
results of screening. The analysis takes into account "feeling" as an
element constituting to the process of knowledge and with speech as a
privileged area of feminist pedagogy.
Limits and possibilities of ethicizing the individual participating in a
techno-scientific survey project become evident. Obvious limits disturb the
enlightenment of a woman when consenting to scientific access to her genetic
information. A monologue movement underlies the attempt to transmit technical
knowledge in an "accessible" language. The script of the conversation
leads us to a surprising revelation when, at the end of the session, the person
appears and talks, revealing a particular meaning to their prior consent and
their real intention in participating in the survey: she desires her actual
body and her integrity as an ideal of beauty to be attained.
Understanding what is beautiful and just for a woman implies, that the
process of obtaining informed consent is something much more than offering
scientific information and the obligations of protecting genetic privacy. It places
a value on sensitivity as a primary source of feminine knowledge concerning her
body and questions the 'free and informed'. Consent is a moment when the
individual becomes responsible for the complexity of elements involved in a
decision based on directions from scientific research.
2C3. A feminist deconstruction of an interdisciplinary model of delivering genetic health care: Building transdiciplinary teams
Gwen Anderson, Shriver Center For Mental Retardation, USA
A collaborative model of practice is essential in providing health care to
all people. This author deconstructs the terms multidisciplinary and
interdisciplinary to understand their advantages and disadvantages. This
critique addresses such topics as philosophic traditions, power imbalances, and
patient/family outcomes. A transdisciplinary model is proposed which calls for
loosening the boundaries that separate each discipline by their role, function,
and status on the team. This model results in cross-pollination and innovations
that serve to mitigate 'fragmented' services by building collaborations across
disciplines, clinical specialties, and health care settings. Key elements
necessary to move toward a transdisciplinary model for genetics are spelled out
in terms of educational goals, team building strategies, system of practice,
and the impact on quality of care.
2C4. Women negotiate prenatal genetic screening programs
Alison Brookes, Deakin University, Australia
This paper addresses ways women negotiate their participation within prenatal
genetic screening (PGS) programs. Using qualitative research in Australia, I
explore the difference between information women glean from PGS for what they
describe as for their "own use", and the medically mandated use of
fetal genetic information. Participants in the research are carriers of genetic
conditions and women mothering children with genetic conditions. The research
explores their ethical decision-making regarding PGS. Far from being passive
participants and recipients of knowledge, the women discussed negotiating with
medical practitioners to undertake or refuse PGS, and how they manipulated
programs to better suit their individual needs. I will discuss the privileging
of medical information over women's own knowledge of their pregnancies, and the
paternalism inherent in current practices of PGS programs. Women spoke of
participation within programs that restricted their ethical decision-making in
a variety of ways: limiting access to screening, withholding information and
presenting information in a biased manner, and the medical and social
expectations of PGS use. The paper concludes with a discussion of the social
contexts that influence (and sometimes direct) the development of women's
ethical responses to PGS.
2C5. Genetic screening and the Wilson and Junger criteria
Darren Shickle, University of Sheffield, UK
The principles proposed by Wilson and Jungner in the 1960s have been widely
used to evaluate screening programmes: 1. The condition sought should be an
important problem. 2. There should be an acceptable treatment for patients with
recognized disease. 3. Facilities for diagnosis and treatment should be
available. 4. There should be a recognized latent or early symptomatic stage.
5. The natural history of the condition, including its development from latent
to declared disease, should be adequately understood. 6. There should be a
suitable test or examination. 7. The test or examination should be acceptable
to the population. 8. There should be agreed policy on whom to treat as patients.
9. The cost of case-finding (including diagnosis and subsequent treatment of
patients) should be economically balanced in relation to the possible
expenditure as a whole. 10. Case finding should be a continuous process and not
a 'once for all' project.
The Nuffield Council on Bioethics felt that the Wilson and Jungner criteria
were not entirely appropriate for genetic screening. However, in their paper
"Is 'Screeningitis' an incurable disease?" Shickle and Chadwick
argued that the criteria were a useful basis for a utilitarian critique of
screening programmes. Unless a special case is made for treating genetics
differently, a genetics screening programme that does not satisfy the Wilson
and Junger is likely to raise ethical concerns. This paper will apply the
Wilson and Jungner criteria to screening for various genetic conditions.
2C6. The moral significance of social and individualistic explanations of disability in bioethics
Simo Vehmas, Univ. Jyvaskyla, Finland
In this paper I discuss the moral implications of the two major approaches
to disability used in bioethical argumentation. The traditional explanation of
disability is a so called individual model which locates the 'problem' on an
individual's functional limitations or psychological losses. Thus, disability
is seen as an individual's pathological and undesirable condition. This
approach is common in bioethical literature. Accounts regarding, for example,
non-voluntary euthanasia of new-born infants and of social justice view
disability as an individual's problem which either worsen an individual's
prospects for a good life or impose obligations on society to compensate for
the unfortunate condition of disabled people and the inevitable burdens related
to their impairment. The individual model has been criticized severely for the
last two decades and a social model or a social constructionist interpretation
of disability has become an influential explanation of disability among
disability activists and researchers. The social model locates the problem on
society which is seen as creating disabilities by determining standards of
normality and excluding those who do not meet them from full participation in
society. According to the social model the individualistic approach to
disability has in part resulted in the oppression of disabled people. Both of
these approaches to disability have major effects on the moral judgments made
regarding individuals with disabilities. I will argue that these two accounts
are in themselves both epistemologically and morally insufficient. Adopting
merely an individual or social model can lead to morally questionable
conclusions regarding disabled people.
2C7. A call on a new definition of eugenics
Yanguang Wang, Chinese Academy of Social Sciences, China
This presentation consists of four parts. In the first part a review on the
varieties of eugenics in the world. In the second part and overview on Chinese
"eugenics" and its ethical problems. In the third part to value the
Chinese "eugenics" against the background of Chinese economics and
culture. In the fourth part to find the ways about how to solve the ethical
problems of Chinese "eugenics".
2C8. Genetics, testing, screening, enhancement & therapy
Ann Lewis Boyd, Hood College, USA
Science seeks to understand the mysteries of nature and the most fundamental
aspect of nature is genetics because genes are the blueprint of all living
organisms. Biomedical research seeks to promote better quality of life for
human beings and current emphasis in genetics is focused on the location and
characterization of each gene in several species, including homo sapiens. Once
the data is available for detecting mutant genes, public policies must be
crafted to guide the compassionate and wise use of genetic knowledge. Will each
country devise individual policies for genetic testing, screening, enhancement,
and therapy, or will there be a universal declaration crafted on perhaps the
Nuremberg Code? The Nuremberg Code has not been adopted officially by any
nation or professional organization but it serves to guide thought about
ethical experimental protocols involving human beings. Given that such a code
prescribes use of knowledge in human experimentation according to scientific
usefulness and informed consent, ought it be adapted to genetics globally?
Scientific progress in the past decade has created therapeutic options for
patients with genetic diseases which previously were either undetected or
unknown. Hundreds of diagnostic tests precisely identify specific types of genetic
mutations that negatively affect human health and well being. What universal
concerns exist about testing for devastating genetic mutations? Confidentiality
of the test results is one concern. Who has access to the information and how
is the information used? How does the knowledge of the genetic constitution of
persons affect their position within a society? What values do insurance
companies and national health care plans place on knowing or preventing the
birth of a person with compromising genetic traits? Who decides which genetic
diseases are unacceptable and which ones are permissible? Interpretation of
what is a negative and what is a positive genetic score has broad ramifications
regarding respect for persons and individual dignity. Physicians are required
in many countries to report certain infectious diseases and to notify other
persons who may be at risk. Will genetic diseases be treated similarly? The
right to know about genetic factors lurking to affect the future health of
persons is widely promoted; therefore, prenatal testing for hundreds of genetic
diseases is supported on the basis that the persons affected, the parents, have
the opportunity to abort a fetus whose life will be one of relentless
suffering. In a few cases, insurance companies have taken a paternalistic
stance, claiming, that once a genetic disease is known to lurk in a family, to
not have prenatal testing is equivalent to a pre-existing condition, and a few
have agreed to pay for prenatal testing on the prior condition that an affected
fetus will be aborted. Admitted, these cases involve horrific diseases but the
position of prescribing who shall live and who should not is a judgment few
people would place in the hands of an insurance company. In less extreme
circumstances, genetic technology permits detection of genes that place
individuals at risk to certain environmental factors such as ultraviolet
radiation. Persons armed with such information may then wisely take precautions
to prevent some types of cancer. Should a company be able to screen potential
employees for such risk factors when the job requires exposure to the hazardous
substance?
Individual genetic testing is done by personal request or through a primary
care physician. Screening, however, is done on a much larger sample of the
population in order to determine the prevalence of the disease causing gene.
Ethnic groups are disproportionately affected by certain traits: Cystic
Fibrosis (CF) in Europeans, Thalessemia in Asians, and Sickle Cell Anemia in
Africans. In the United States and United Kingdom, screening for CF is offered
for prospective parents when each or either have a familial history of CF. The
test results present the couple with options including abortion, birth with
medical treatment, and gene therapy. The medical prognosis for a CF individual
has greatly improved through palliative care. Nevertheless, the condition is
not curable nor is it immediately lethal. Gene therapy has been disappointing
in early trials but new delivery systems for functional genes into the
respiratory epithelium predict eventual success. Alternatively, some success
has been achieved, albeit at extreme expense, to use in vitro fertilization and
select non-CF embryos for implantation. Some have even questioned if it would
not be wise to extend somatic gene therapy to germ line therapy which has the
potential of preventing CF and similar genetic diseases. The efficiency of gene
replacement techniques to correct a genetic defect is extremely low and the
risk of harm is too great to support the risk which is a simplistic
cost-benefit assessment. However, the time for international public debate has
arrived through which the merits of germ line gene therapy ought to be decided.
The ability to correct genetic defects is on the horizon of scientific
development. Will the technological imperative compel adoption of genetic
therapy, especially germ line therapy, to create the quintessential homo
sapient, or will the value of diversity and conspicuous heterogeneity be valued
as sui generis? Respect for Persons maxim states that: "those actions are
right that treat human beings, whether you or another person, as an end and not
simply as a means." It is a standard worthy of reflection in the face of
proliferating genetic technologies. Equality in ethics often is an ideal toward
which human beings may strive but a goal seldom achieved in praxis. In the
modern technology-based health care system, absolute equality would mean that
every person has access to every conceivable medical treatment, at all times,
in the most modern setting with the most skilled physicians. Whereas the rule
would resonate well with distribute justice and respect of individual human
dignity, it is neither realistic or practical, therefore, some alternative
system will need to be created to achieve social distributive justice.
Nature has been at the selection game for over three billion years. Human
beings have existed less than a million years and yet technology provides the
opportunity for intentional genetic selection and enhancement. Is there the
foundation of knowledge and wisdom to guide the choices? Genetic information
has the potential to enhance understanding of human beings, offer profound
therapeutic intervention for horrific diseases, prevent suffering, and improve
the relationship among all sentient beings. The evolving picture of the
relationship between homo sapiens and the rest of nature has serious
implications about environmental conservation, stewardship, and creation. The
challenge is to decide how to use these powerful tools in genetic technology to
a beneficent end that ensures the well being of future generations and respects
the dignity of each and every person.
2C9. Genes and the future shock
Tuija Takala, University of Helsinki, Finland
Recent developments in biology have made it possible to acquire more and
more precise information concerning our genetic makeup. Although the most
far-reaching effects of these developments will probably be felt only after the
Human Genome Project has been completed in a few years time, scientists can
even today identify numerous forms of illness and disease by the use of genetic
tests. The improved knowledge regarding the human genome will, it is predicted,
in the near future make diagnoses more accurate and treatments more effective,
and thereby considerably reduce and prevent unnecessary suffering. On the other
hand, however, the very existence of genetic information has raised moral
questions and caused distress.
Apart from the adverse physical conditions which can easily be classified as
medical ailments, eager scientists hope to identify genetic bases for other
socially interesting features in our personhood, such as aggressiveness,
egoism, and our ability to care for others. Even our sexual orientation, if genetically
determined, is a matter of interest for these scientists. My question in this
paper is, how do, and how should, these various types of actual and alleged
genetic knowledge influence our conception of ourselves as persons. Should we
see ourselves as sick, if the mapping of our genes reveals that we are likely
to develop a hereditary disease before our ninetieth birthday? Or should we
change our attitudes about our intelligence or sexual orientation if biologists
demonstrate that we are not what our genes should make us? And what is it about
genetic knowledge that threatens our conception of ourselves as persons?
The main conclusion of the paper is the following. Before the era of genetic
information, we had only one certain piece of knowledge concerning our own
future, namely that we are mortal. Based on the fact that everyone before us
has died, we are all potentially dead. With modern genetic knowledge we are not
just potentially but also presymptomatically dead. Genetic information opens a
peephole to our own future. We are all faced with the facts that genetic
knowledge now exists and that by testing ourselves we can find out about
various genetic conditions we may or may not have. If there is a threat to our
conception of ourselves as persons in genetic knowledge as such, this is it. To
know that there is information about our future available to us can shake the
foundations of our self-image; the future is, up to a point, determined. The
greatest threat that genetic knowledge imposes upon us as persons is the one
that we already have to live with: the very existence of genetic information.
As far as particular genetic information goes, especially when it is knowingly
sought, genetic information is no different from any other distressing
information.
2C10. The Japanese concept of familial privacy and genetic information in Asia
Fumi Maekawa & Darryl Macer, University of Tsukuba, Japan
The determination of the genetic make-up of human beings will have a great
impact on society, since with this acquired knowledge not only can the person's
personal history be screened, but also their medical history and future
prognosis can be revealed. The concept of family is very important in Japanese
culture, and 1993 surveys suggested that 90% of people would share the results
of a gene test with their immediate family, more than in some Western
countries. To examine the reasoning people have a series of interviews with
members of the public (N=201) was conducted in August-October 1998 in Japan.
The survey was conducted to examine three points in particular: 1) People's
awareness of genetic information and technology, 2) People's idea of privacy
and, 3) The familial role when discussing privacy.
Only 49% of respondents had heard of genetic testing to predict whether they
would develop a genetic disease later in life. When asked whether they would
take the genetic test with either Yes or No responses, 67% said that they would
want such a test for cancer, 60% said for Alzheimer's disease, 64% said for a
disease like Down's syndrome or muscular dystrophy. Two thirds (66%) said that
they would want to know the result even if there is no way to lower the risk.
These results are somewhat more positive than the 1991 survey among students,
public and scientists in Japan (Macer, 1992) where 50-57% said they would take
a genetic disease for a fatal disease that develops later in life.
Regarding privacy, 74% said that they would share their test results with
someone else, and 34% mentioned family in general, 34% spouse, 18% parents, 15%
friends, 10% children, with only 1% mentioning siblings. A few more, 80%, said
they would share other health related problems with someone also, and for this
question only 20% mentioned family in general, 17% spouse, 10% parents, 5%
children, 2% mentioning siblings, with an increase to 24% mentioning friends
and 4% mentioned doctors. These results are lower than the 1993 International
Bioethics Survey (Macer 1994), in which 90% said they would share the results
of a genetic test with their spouse, fiancee or immediate family. A general
question on privacy was asked, and 82% said that a key point in choosing a
specific person was the depth of relationship with that person, 32% said
professional knowledge, and 7% for other reasons. Only 3% said gender was a
factor.
The last question was on how wide they consider their family to be. 84%
included parents, 79% spouse, 77% their children, 72% siblings, 42%
grandparents, but only 5% included aunts and uncles, and 5% nieces and nephews.
When asked how they would feel if they had a closely related person who had a
genetic disease, 23% said people are the same, 10% would help them, 6% would
seek advice from others on what to do, and 3% said they wanted to be positive
to them. 4% said it depended on the illness. 3% said in theory they would like
to help but they were not sure whether they could. 1% said they would be
afraid, 3% said they or their family would reject them, and 2% thought the
person was risky, and 1% said they felt helpless. However, 30% did not say
anything and 13% said they don't know. The results were striking by the absence
of sympathy or compassion comments which were about 23% of the answers to a
similar question in the 1993 survey that gave specific examples, hemophilia and
muscular dystrophy. We suggest that naming a specific disease may shift some
people's response from people are the same to sympathy, because in 1993 only
about 6% said people are the same in open comments.
2C11. Foundation of genetic medicine and generally accepted principles, protocols and practices
Erin Williams, Foundation of Genetic Medicine, USA
The Foundation for Genetic Medicine, Inc., was founded in 1998 and is
launching many educational and other strategic programs. The foundation will be
introduced, and topics include the development of Generally Accepted Principles
in Genetic Medicine (see IAB4), practical uses of the new DNA Patent Database,
informed consent practices in studies related to genetic medicine, and methods
for educating various communities about genetic medicine. The "Generally
Accepted Principles, Protocols and Practices", can serve as guidelines
suggested to improve practices and prevent misuse of genetic medicine.
2C12. Cost-effective genetics and eugenics
Daniel Wikler, University of Wisconsin, USA
Genetic counseling is expensive, but as it improves and expands it offers
the possibility of averting the conception and birth of children with expensive
needs. The net social cost, therefore, may be nil. Does this consideration
argue for increased public investment in genetic counseling, or should this be
rejected as a return to eugenics?
2C14. Cultural and Ethical Dimensions of Genetic Practices in China
Renzong Qiu, Chinese Academy of Social Sciences, China
I want to explain the differences between the responses from Chinese
geneticists to the international survey on ethics and genetics and those from
their Western colleagues. Genetic practice, including treatment from
geneticists and responses from clients has been greatly affected by cultural
factors and moral ethos in China. In Chinese culture Confucianism is dominant
in which filial piety is a primary principle from which follow the value of
respecting the elderly, and also the ethos of sexism and stress on
reproduction. The human fetus has a value, but it has never been treated as a
person. "Good birth and good death" are ideals for Chinese. For
Chinese health is the balance of yin and yang. Disease or disability is an
imbalance of yin and yang that may be caused wrongdoings by parents, or even
ancestors of those with genetic disease, or genetic disease is a retribution of
the wrongdoings that were made in newborn's previous life. So we can see a
contradictory attitude towards the disabled. Confucian ethics as well as
traditional medical ethics are mainly virtue ethics. The moral judgment a
Confucian makes is not a deduction from a principle. The impact of these views
on genetics will be discussed.
2C15. The Ethics of Genetic Epidemiology
Robin Alta Charo, University of Wisconsin, USA
In the coming decades, genetic epidemiology using large archives of stored
human biological materials will be essential for indentifying candidate disease
genes and linking them to clinical outcomes. This will require, however, large
scale research on patient records and tissues that some would argue is an
invasion of personal privacy. Where individual consent is difficult to obtain,
can such research be done consistent with ethical norms regarding respect for
personal autonomy and protection of the interests of the research subjects?
This talk will summarize the current debate in the United States. Overdinner:
Are medical doctors the only scientists with ethical obligations?
Wendy Orr, Truth and Reconciliation Commission, South Africa
The Truth and Reconciliation Commission (TRC), while enjoined by legislation
to focus on gross violations of human rights as defined in the Promotion of
National Unity and Reconciliation Act, has, in the course of its work, both by
intent and default, revealed that very few arenas in South Africa were without
moral and ethical abuses. One of the most chilling images. best evoked in the
hearings into South Africa's Chemical and Biological Warfare (CBW) program, was
of the scientist in a white coat, sitting in a laboratory and cold-bloodedly
researching, designing and manufacturing weapons of mass destruction.
We would be naive to think first]y, that South Africa was the only country
in which scientists' behaviour was morally and ethically dubious and, secondly,
that the end of apartheid has heralded the end of unethical scientific
practices, While the area of health and ethics has for some time been receiving
attention (albeit too little), areas of other scientific endeavour seem to be
ignored in the debates about ethics and human rights.
The CBW hearing made it all too evident that all scientists are vulnerable.
We heard from organic chemists, industrial engineers, veterinary surgeons,
researchers and dentists, among others, about how they had participated in the
development of chemical and biological weapons. Even if this participation had
been unwitting, as many of them claimed, the fact that so many eminent
scientists were prepared to work for so long under distinctly suspicious
circumstances, without asking any questions, is disturbing. Even more
disturbing were the responses of those who did realize what they were doing,
but failed to speak out or take action, They claimed that "the joy of
science", the "challenge of the project", the "thrill of
success" tended to divert their attention from the fact that science was
being subverted and perverted.
On the eve of the new millennium, with a host of ethical and moral dilemmas
facing every sphere of our lives, it is indeed appropriate that we pause and
take stock of how unethical and immoral science has furthered human rights
abuses in the past and how moral and ethical science can prevent them in the
future. This presentation will serve as a starting point for discussion on the ethical
obligations of all scientists."
3 November
FAB2 Globalizing Feminist Bioethics
(cosponsored by Ford Foundation)
3P1. What do we learn from Japanese feminist bioethics?
Masahiro Morioka, Osaka Prefecture University, Japan
Japan has a long history of feminism that goes back to at least early this
Century. Japan's "second wave feminism" began in 1970, when the
women's liberation movement rippled through this country. They revolted against
the government's anti-abortion policy and claimed that women have a right to
abortion. Japanese bioethics began in 1972, when Mitsu Tanaka wrote her first
book "Inochi no Onna tachi e (To Women and their Life)." Japanese
bioethics started as feminist bioethics from the beginning. Contemporary
Japanese male bioethicists have ignored this fact, and feminists of the world
do not necessarily know this. TANAKA emphasized in women's liberation writings
that what we have to do is not to determine ethical standards on abortion, or
to reach a conclusion that abortion is ethically acceptable for women. Instead,
she seems to have tried to say that the most important thing is to let every
woman and man think deeply about their own being when they have to destroy
fetuses in order to survive their everyday life, and fight against a male
dominated society that forces women to abort their babies. Japanese feminist
bioethics has rich discourses about abortion and human life, some of which is
unique, and all of which is important for world wide audiences. Their discussions
are a precious source for future men's studies, and gender sensitive bioethics.
3P2. Gender in bioethical decision making
Ryoko Takahashi, Kanazawa University, Japan
A feminist approach to bioethics which is needed now is not only one which justifies
a woman's autonomous decisions in matters concerning her own body, but one
which more actively creates the context for involving men in the discussion of
how to change the asymmetric and unequal structure and function of heterosexual
relations. In this connection, I analyze the context of the argument about
women's self-determination, drawing attention to the interlocutor's gender and
confirm the practical necessity of self-determination. I then raise two issues:
1) we should not lose sight of the fact that, as a result of an approach based
on women's self-determination, men end up taking advantage of their exemption
from responsibility in decisions on abortion and pregnancy; 2) feminist work
must be promoted which interacts with a men's studies which openly and actively
discusses men's legal liability and sexuality.
3P3. Abortion and the Maternal Protection Law
Hiroko Goto, Fuji College, Japan
The new Maternal Protection Law which regulated abortion came into force in
September 1996. The old law, the Eugenic protection Law, had been attacked
because of promotion of discrimination against persons with a mental disorder.
The law stipulates several situations where abortion is permissible. The case
where she, her spouse, her parents or relatives have problems; mental disorder
was included in those situations. The new law erased the terms concerning the
stipulation for persons with a mental disorder. However this law still ignores
the self-determination of women. Article 14 in the Law requires the consent of
her spouse (or partner) for abortion. After the judgment in Roe v. Wade given
by the US Supreme Court in 1973, the requiring of her husband consent has been
strictly prohibited in all States. This is because this requirement prejudices
the right to privacy and the self-determination of women. However, the
requiring of husband consent has not been fully discussed among academic people
as well as feminist groups. Through reviewing the discussion surrounding the
Japanese abortion law, I would like to try to examine how the right of
self-determination of women should be linked to abortion.
3P4. The moral responsibility of the impregnating sex: An autocritique of the sexual and reproductive ethics of men
Ichiro Numazaki, Tohoku University, Japan
This paper discusses "male responsibility" in contraception and
abortion from a critical men's studies perspective, and the author advocates
rethinking the theoretical framework of current debates and reforming the
social distribution of sexual and reproductive responsibilities. I propose
that: 1) the "intravaginal ejaculation" that results, actually or
potentially, in an "unwanted pregnancy" must be conceptualized as an
act of sexual violence committed by a male partner; 2) therefore he is to be
held primarily responsible for the consequences of an unwanted pregnancy; and
3) women's right to abortion accordingly be reconceptualized as a right to
compensation for the "damages"--physical, psychological, and
socio-economic--caused by a male act of sexual violence. I shall argue that
conventional bioethics, as an ideology, effectively conceals male
responsibility in sexual and reproductive relationships by
"naturalizing" pregnancy as a biological process inside the female
body. By contrast, my argument "de-naturalizes" and thus
"politicizes" pregnancy as a consequence of an "unequal and
unjust social relationship" between the sexes.
Following Susan Okin's vulnerability thesis in marriage and family and
extending it to sexual and reproductive relationships, I argue that it is the
male, the "impregnating sex," that causes the vulnerability of women
and fetuses and that it is, therefore, the male who ought to take greater
responsibility in preventing unwanted pregnancy and compensating for the
"damages" inflicted on pregnant woman and fetuses. I shall finally
suggest some concrete measures to institutionalize the male responsibility in
sexual and reproductive conduct.
3P5. On the possibility of legalizing male responsibility for contraception
Naoko T. Miyaji, Kinki University School of Medicine, Japan
Reproductive rights are now widely acknowledged internationally as basic
human rights of women. However, without enforcement measures to deter men from
violating these rights, they will be illusory for many women. In this presentation,
I discuss the possibility of imposing a legal duty on males to practice safe
and contraceptive sex. I argue that men should face legal sanctions if they do
not practice safe and contraceptive sex, unless the woman clearly wishes a
reproductive outcome. This argument is justified by natural gender differences
which disproportionately burden women when they become pregnant; men should,
therefore, bear the burden of contraception. Such a burden may be as yet
unacceptable; as an alternative, the possibility of making non-contraceptive
sex illegal only when a woman has clearly asked the man to use contraception is
discussed. The main technical challenge for such a law is proving that a
particular man performed unlawful non-contraceptive sex. Genetic analysis of
semen may be an answer. Finally, I explore the problems that make it difficult
to bring about this kind of law, such as emotional resistance deeply rooted in
the metaphorical meaning of pregnancy in sex, liberal legal thinking, and the
drawbacks resulting from such a feminist strategy.
3A1. Feminist bioethics: The speech of the noise
Debora Diniz, University of Bras’lia, Brazil; and Ana Cristina Gonzalez,
Universidad Nacional de Colombia, Colombia
The first bioethics theories that arose during the 1960s had the difficult
role of trying to be positioned within the sphere of academia. The principalist
theory for example, which was created in the United States in the beginning of
the 1970s, was a watershed from traditional "medical ethics" and the
new formation of "bioethics". Initial bioethics theories, in
particular, the principalist theory, tried to develop one universal ethic which
could be valid for all (or almost all) situations of moral conflict which
characterize bioethics. Those individuals who defend the theory have argued
that, in contrast with morality, which is historical and localized, ethicity
could be a phenomena existing above morality. Thus it would be useful for all
cultures. It was only in the beginning of this decade that the first critical
studies on this theory appeared. Both academic and social minorities
(bioethicists from peripheral countries such as Brazil and Colombia, and the
Women's Movement to name two examples) have played, and continue to play a
prominent role in the process of critical evaluation. The field of Feminist
Bioethics has, in this way, been founding and opposing points of view to the
mainstream idea of universal ethics.
In this presentation, we will analyze the main characteristics of the
theoretical movement called "Feminist Bioethics". We will argue,
through a bibliographical survey, how the "speech of noise" has been
shaped by the hegemonic ethics discourse, making it merely reactive rather than
active.
3A2. Social development organizations and their ethical dilemmas
Rainera L. Lucero, Philippine Partnership for the Development of Human
Resources in Rural Areas (PhilDHRRA), the Philippines
The downfall of the late Philippine dictator brought about the installation
of the first woman President of the Republic. During her term, the former
President Corazon Aquino cultivated the spirit of democracy and encouraged the
formation of non-government organizations (NGOs) and civil societies. NGOs
exist to fill the gap between the government organizations and the local
communities in the delivery of basic services, and to develop and empower the
latter. With the strong influence of its past colonizers, the Philippines is
still characterized by a patriarchal system. Most NGOs are dominated and
directed by males whose main interests are in the rehabilitation of the
environment and development of farming and fishing technologies; they have
little sensitivity to the gender power disparity and its consequences. This
challenge faces community organizers working around gender issues and
reproductive health problems. What can they do when support and guidance can
not be provided by this kind of institutional leadership?
Participatory action research was conducted in a number of upland barangays
of Cebu City. With some training regarding gender sensitivity and orientation
to reproductive health issues, the local research teams composed of women and
men were adequately prepared to design their own research tools to obtain
information about gender bias and its impact on reproductive health.
Involvement in this participatory action research project enabled them to
better appreciate the data they gathered, then later analyzed.
The research method proved to be effective in calling forth community issues
including sensitive issues around reproductive health and gender. The process
became a venue for women and men to raise their issues to local governments,
those very agencies responsible for providing basic services, and to the NGO
leaders. The dilemma rests within the NGO, but even more heavily on the
community organizers who do not have a strategic position to effect change. In
order for the organization to effectively respond to the issues that emerge,
such as gender bias, power imbalances, and reproductive health, there is a need
for a change in organizational values and attitudes before behavioral change
can occur.
3A3. Hospital ethics committees in the philippines: perspectives and approaches in decision making
Maria Lourdes O. Acosta, University of the Philippines, the Philippines
Discussions on health care ethics are relatively new and emerging endeavors
in the Philippines particularly among health professionals themselves and/or
within institutions. Hospital ethics committees, for instance, exist basically
for protection against malpractice suits, so that sometimes the rights of
patients, particularly women, is an ethical standard that is not fully
recognized or protected. Moreover, in the discussions, deliberations, and
analysis of cases and ethical dilemmas, paternalism (which still defines the
way doctors treat and relate to their patients) and a lack of awareness of the
gender aspects of issues prevail.
In general, this paper will seek to respond to the dearth of studies on
bioethics committees and professional medical practice in the Philippines
within the context of gender, culture and poverty. It specifically aims to
determine the present status of hospital ethics committees in the Philippines
(i.e., their role/function, structure, composition and the usual kinds of cases
being reviewed). More importantly, it will examine the processes involved in
ethical discussions, deliberations, analysis and decision-making from the
perspectives of gender and human rights, thereby determine the ethical values,
standards or perspectives being used by ethics committees as a basis for
decision-making.
3B1. Reflections on the experience of pursuing feminist health care ethics in a collaborative, interdisciplinary network
Susan Sherwin, Dalhousie University, Canada
We were all involved in a four and a half year long project exploring issues
in feminist health care ethics; our grant facilitated regular meetings of 11
academics from different disciplines and different institutions over the course
of this period. We discovered ways in which our different disciplinary
perspectives obstructed our abilities to communicate and also ways in which our
different perspectives helped illuminate aspects of our work that were
difficult to discern from within our own separate training. In this
presentation, we shall speak of the experience from both personal and
professional perspectives, discussing both the benefits and the obstacles we
encountered.
3B2. Women and health research: New Canadian research guidelines
Francoise Baylis & Jocelyn Downie, Dalhousie University, Canada
This paper explores our experience as members of a feminist research group
attempting to influence Canadian public policy on research ethics. It reviews
some of our efforts to ensure that principles of feminist ethics be
incorporated into new national ethics guidelines governing research involving
humans. Interactions between the Feminist Health Care Ethics Network and the
Tri-Council Working Group on Research Involving Humans [hereafter the Working
Group] are discussed. The Working Group was created in the fall of 1994 by the
three principal funding agencies controlling public research money in Canada:
the Medical Research Council of Canada (MRC), the Social Sciences and
Humanities Research Council of Canada (SSHRC), and the Natural Sciences and
Engineering Council of Canada (NSERC). The Working Group was assigned the task
of drafting a common set of ethics guidelines for research involving humans
which could be adopted by all three Councils. These guidelines were published
in Spring/Summer 1998.
In this paper, we do not review the details of the full history of our
involvement with the Working Group, but rather focus on a few of the many
issues that we debated: 1) the direct exclusion and under-representation of
women as subject-participants in health research; 2) the indirect (but
intentional) exclusion of some women from clinical research by requiring the
use of hormonal contraceptives as an inclusion criterion; and 3) the failure to
attend to women's interests in setting the research agenda. Through reflection
on our interaction with the Working Group on each of these specific issues, we
attempt to ground and illustrate our concerns about feminist participation in
the policy-making process.
3C1. Sex bias in pre-distribution drug-testing: Two Northern responses
Nadine Taub, Rutgers School of Law, USA
Modern systems of drug regulation combine the concept of informed consent
with a requirement of government approval that conditions marketing on the
performance of clinical trials. The trials permit government regulators to make
a threshold decision to allow distribution and the patients, advised by
physicians, to make a decision regarding taking the medication. Government
provisions and, at times, ethical constraints usually set out requirements for
testing procedures. Sex bias in this testing procedure has received a great
deal of attention recently. Likewise, there has been serious consideration of
the best ways to eliminate this bias and to ensure that recommended doses--if
any--are safe and effective. Pregnancy and potential pregnancy are particular
concerns. This presentation explores the different approaches taken in the
United States and Sweden, two northern countries much involved in drug
manufacturing. The session will also attempt to assess the adequacy of their
approaches.
3C2. AIDS research and developing countries: Compassion for whom?
Florencia Luna, Universidad de Buenos Aires, Argentina
Recently there has been an important debate regarding HIV trials in
developing countries. They were conducted in Cote d'Ivoire, Uganda, Tanzania,
South Africa, Malawi, Thailand, Ethiopia, Burkina Faso, Zimbabwe, Kenya and the
Dominican Republic. They tried to establish a minimum dose of AZT necessary to
prevent vertical transmission of HIV from infected mothers to their unborn
children. The main goal was identifying the cheapest and effective treatment
that could prevent transmission and could be affordable, mainly for developing
countries. In order to achieve this objective the women in the trial were
randomized into various dosage and placebo arms of the trials. The trouble with
using such a trial design was that AZT has been proven effective in blocking
approximately two thirds of transmission of HIV to the fetus and in these
trials some women were given placebo instead of the standard therapy.
Very different arguments were given. One was an empirical perspective
involving data on causes of death in Gambia that were provided by the Medical
Research Council Joint Ethical Committee of the Gambian Government. Another
example is a theoretical analysis suggesting ethical imperialism. The arguments
presented here illustrate some of the difficulties conducting research in
developing countries, but does not acknowledge some other factors that are
still relevant for continuing protection of research subjects.
In this paper, I will outline some of the main arguments presented in this
discussion, I will evaluate them and also try to enrich the debate by providing
other variables that my experience in an another developing country may
provide. Although, I focus on the AZT trials in Sub-saharian Africa, I think
that some of the arguments I raise and the analysis might be usefully applied
to some other research in developing countries.
3C3. Norplant: Women's friend or foe?
Laurel Guymer, School of Social Inquiry, Australia
Norplant - a new hormonal contraceptive - is currently being trialed on
women in Sydney, Australia under the guise of promoting 'choice' and even
deemed necessary to prevent the population from exploding. Norplant was hailed
as an ostensibly hassle-free breakthrough when it was first introduced in the
US, and by 1994, more than one million women were using it, with studies
finding the device far more effective than the pill in preventing pregnancy.
But, Norplant soon became embroiled in a series of political and medical
controversies. Advocates for birth control generally intended it to be an
option for all women, regardless of race and class. The reality, however, is
that poor, otherwise disempowered women worldwide, often from minority groups
are the first to experience the impact of new and still experimental
contraceptive technologies through coercive population control programs.
In this paper I will critically discuss some of the questions surrounding
the current research on Norplant, explore the claim that the move to provider
controlled contraceptives must be assessed in the light of its power to remove
from women the ability to make decisions themselves to start and stop
contraception. I will also ask whether this contraceptive will indeed 'empower
women'. It is important to stimulate debate surrounding the unethical research
currently being undertaken. I suggest a redirection in contraceptive research to
prevent Norplant from being used as a tool by the population control
establishment.
3E1. Genetics and personal autonomy: At the intersection of bioethical and feminist theories
Anne Donchin, Indiana University, USA
Some bioethical theorists are now coming to acknowledge that social
relations are a condition for the development of capacities to make autonomous
decisions, but they seldom recognize that significant interpersonal relations
continue to influence self-identity and conditions for autonomous self-determination
throughout the life span. However, as more and more genetic anomalies are
identified and diagnosed, it is growing increasingly evident that biological
connection often plays a significant part in shaping self-identity and
capacities for autonomous self-direction. Taking up several case histories, I
discuss effects of bioethical decision-making on other family members,
stressing how access to knowledge bearing on future plans and understandings of
interpersonal relations may impede or promote autonomy. Lastly, I explore
recent developments in feminist theory that can potentially make a significant
contribution to the reconceptualization of personal autonomy within bioethical
theory.
3E2.The Development and protection of autonomy competency and health care practice
Susan Dodds, University of Wollongong, Australia
As bioethicists begin to move to a greater recognition of the importance of
social relations and the development of 'autonomy competency' for personal
autonomy, there is a need to re-examine the role that health care contexts can
play in the development and protection of autonomy competency. This paper moves
beyond understanding respect for autonomy as respect for expression of autonomy
in informed consent, to raise these wider questions.
3E3. Bodily autonomy from a relational perspective
Catriona Mackenzie, Macquarie University, Australia
This paper explores the implications of a relational approach to autonomy
for conceptions of bodily autonomy. The author argues that a relational
approach, which links agents' capacities for autonomy to their self-conceptions
and their social relations with others, raises questions about the adequacy of
standard bioethical conceptions of consent, choice and bodily integrity.
3E4. Autonomy in general practice consultations: Theoretical and practical considerations
Wendy Rogers, Flinders Medical Centre, Australia
Respect for patient autonomy has been accepted as a basic ethical principle in
Western health care over the past thirty years. Models of the patient-physician
relationship based upon this principle are known as informative or consumerist
in that the doctor provides information to the consumer who then makes a
decision appropriate to her circumstances. Consumerist models are seen as a way
of relocating power with patients, rather than with doctors, thus avoiding the
pitfalls of paternalism. However, there are both theoretical and practical
problems with this approach. This paper briefly explores some of the
theoretical problems of consumerist relationships prior to presenting the
results of a study performed in the general practice setting in which 21 GPs
and 17 patients were interviewed using a semi-structured interview guide focusing
on issues arising from the management of low back pain. Patients and GPs were
found to hold a wide range of views on patient autonomy within the
consultation, indicating the context-dependent and complex nature of dynamics
within the patient-physician relationship. Patientsâ desire for information was
not matched by their desire for control over decision making. Understanding
patient autonomy in primary care requires appreciation of relational elements,
in particular the presence of trust.
3F1. The ethics of `HIV Clearance' for returning overseas Filipino workers
Salud B. Zaldivar, Research Institute for Tropical Medicine, Muntinlupa
City, Philippines
At RITM which is a National Research Center for HIV testing and patient
care, eleven documented cases of returning OFWs have infected their wives with
HIV. Six men knew of their sero-positive status long before coming home, but
refrained from informing their wives. Four were surprised to find out about
their positive test results when they applied for renewal of their contract in
the Middle East where HIV testing is compulsory. Only one man told his wife
about his sero-positive status on the night that he arrived home. When
disclosure of a diagnosis of HIV diagnosis becomes inevitable, the already
exposed and perhaps, infected wife perceives she has no opportunity to prevent
sexual transmission of the virus.
To further probe this observation, a simulated dilemma situation was
utilized in an AIDS Awareness Campaign Form held in 6 municipalities in Metro
Manila with a total of 647 Volunteer Barangay (community) Health Workers as
target participants. The majority of them (88%) confirmed by their responses to
questioning, that getting HIV infection from their husbands is a
"given" that can not be prevented. Toward the end of these animated
discussions where HIV related socio-cultural issues were discussed, the wife of
an ex OFW who is a member of the Speakers' Bureau for Persons Living with
HIV/AIDS provided a human face to further clarify misconceptions. She emphasized
that women need to be and can be empowered to negotiate with their husbands on
matters that endanger their reproductive health; however, it requires that both
parties be sensitized to their personal values, and given an intervention that
will help them to clarify these to each other.
Adherence to traditional values of unquestioned submission by wives to their
husbands' sexual demands is generally observed, in spite of the risk of STD/HIV
infection. However, the ethics of HIV clearance must involve informed consent
prior to sexual renewal when a spouse returns from overseas assignment. This
issue is by far much more complicated than technical difficulties encountered
in HIV testing.
3F2. Financial empowerment of women mediating for treatment of the sick child
Veronica L. Tallo, Research Institute for Tropical Medicine, Muntinlupa
City, Philippines
A mother's health related functions can be categorized in three: health
provider, health care mediator, and teacher. As health providers, they organize
the household so that its environs and atmosphere are conducive to health and
protect its members from disease and hazards. They are the first diagnosticians
when the child is ill and consequently the first healers to attend to the sick
child. In case of domestic care failure, the mothers are responsible for
mediating treatment between the sick child and healers outside the home. In
most instances, however, mothers are inhibited to seek appropriate treatment
outside the home for a variety of reasons, among others the availability
/unavailability of resources which mothers are not at liberty to expend.
Acute respiratory infections (ARI), particularly pneumonia, claims 4 million
deaths a year from children under 5 years of age worldwide. In the Philippines,
everyday over 1500 children under the age of 5 years have pneumonia. Each day
eight children die from the disease primarily because less than 4 are referred
to health facilities where appropriate care is available.
A study was conducted in a rural area in the Philippines to test
effectiveness of the World Health Organization's (WHO) algorithm on the
treatment of pneumonia by peripheral health workers using anti-microbials. One
arm of the study involved some 300 rural mothers and their ability to make a
decision on mediating for appropriate treatment for a child with severe
pneumonia. The study revealed that while mothers have the power to expend
household finances on daily operational expenses, this does not include the
initiative to decide to use these same resources for emergent and necessary
hospital treatments. They claimed that a mother should not spend household
resources for personal reasons. On the other hand, fathers have a lot of
financial independence in spending household resources including such vices as
smoking and drinking. This precarious situation is difficult because it places
the sick child at risk of dying from pneumonia. The implications of these
findings are enormously important for child health internationally.
3F3. Changing perspectives and challenges to the notion of expertise: Grassroots women as experts and exposing the myth of bottom up
Fatima Alvarez-Castillo, Philippine Health Social Science Assn., Philippines
Alternative approaches to development planning started to become fashionable
in the 1970s. This was brought about in large part by the critique made by
activists during the 1960s and 1970s of the traditional top-to-bottom approach.
Development planning according to this philosophy should start with those at
the bottom-with their needs, which should then be translated by experts into
policies and programs. Only then would such programs actual be responding to
the needs of communities.
While this alternative is an improvement compared to the traditional approach,
it is substantively insufficient, however, because it still envisions
grassroots communities as lacking expertise to formulate their own programs and
policies. Even worse in many developing countries, the bottom-to-top approach
is only rhetoric.
An ideology that claims that expertise results only from scientific training
is elitist and is not based on factual evidence. The idea that grassroots
communities have accumulated knowledge validated by centuries of experience is
not yet recognized. Experiential knowledge makes grassroots leaders the experts
about injustice, and marginalization, as well as human resilience and the
ability to survive. Creation of a false hierarchy which holds scientific
experts above and experts by experience below is artificial and serves only to
maintain an elite status quo. Daily histories of people and communities are
replete with information and insights on how social change can be initiated and
sustained. While it is true that community experience and culture can solidify
conservatism, it is also true that experience can be the wellspring of
innovative change.
Grassroots women possess in their collective memories knowledge and wisdom
about small and big struggles, their pains and sufferings, and their resilience
and strength. This is a largely untapped reservoir of expertise, because
paternalistic views about their lack of scientific knowledge and expertise
still dominate the culture. When it comes to analyzing their problems, planning
for change, strategizing for carrying it out, grassroots women are the experts:
they are the top, not the bottom. However, when it comes to what is being done
in communities, they are at the bottom because they do not have the power to
challenge prevailing traditions and the authority of experts.
The task at hand is to build a theoretical framework based on women's
empowerment which is largely derived from the knowledge and expertise of
grassroots women. Let their knowledge be mainstreamed into feminist discourse;
their language enriches that discourse. To fulfill this task, we must first
inform ourselves about their histories and their struggles: Feminist theory
would be richer and better grounded. We can Learn From These Grassroots Women!
Their voices call out to feminist researchers and feminist advocates
world-wide.
3F4. Poverty, gender, and reproduction: Understanding the terrain of women's lives
Maria Delia A. Monares, University of the Philippines, the Philippines
Discussions on reproductive health care issues have often overlooked the
terrain of women's lives. Medical and other health care professionals deal with
reproductive health issues from their own perspective overlooking underlying
factors that pave the way for these issues. Hence, reproductive concerns that
cut across women's life-and-death situations are not addressed adequately,
especially in rural areas in the Philippines where access to quality health
care is practically nil. In the urban areas, quality health care is accessible
only to those who can afford to pay. This paper explores the dynamics of
women's reproductive health status in the context of poverty, gender and
reproduction. It postulates women's multiple gender roles - as wives, mothers,
housekeepers - in a situation of dire poverty that largely influence women's
reproductive health (e.g., spacing of children, pregnancy) and their exercise
of reproductive rights. In the context of poverty and in a cultural setting
where most poor women internalize their subordination to the men in their
lives, women's health, especially reproductive health, suffer the most. In the
process, these women obliterate their personal identities as women and journey
through their lives not knowing when to assert their choices, much more their
reproductive rights. It is a challenge for medical and health care
professionals to look into the underlying culture of helplessness brought by
poverty and gender subordination to help them in handling women's problems in
reproductive health. By understanding the terrain of women's lives, a more appropriate
health care response that merits justice for women's interests can be pursued.
3G1. Homosexuality in China: Ethical perspective
Xiaomei Zhai, Capital Medical University, Beijing, China
This presentation is a try to approach to homosexuality in China from an
ethical perspective. In Chinese history homosexuality has been a controversial
issue. On the one hand, homosexuality was described as a romantic behavior of
refined scholars. On the other, it was blamed as a fashion which can devastate
the country. In pre-modern era of China, homosexuality has been widely
described both in official historical records and in novels or short stories.
In any case it was not illegal, though it would be immoral from Confucian
perspective.
Since the revision of the Regulation on Public Security in 1980s,
homosexuality is not illegal in today's China too. But the prejudices toward it
strongly persist. There are many people who think homosexuality as immoral or
perverse. This attitude drove homosexuals into underground and margin of the
society. They are unable to access to HIV education, information and
counseling. The risk of their infection of HIV is rather high. Many of them
still keep unsafe sex behavior, and don't know how to protect themselves. The
question of whether homosexuality is immoral or perverse is the one we have to
give an unambiguous answer.
Homosexuality is a minority of sex in China, and consists of about 30
million people. One argument for the proposition of homosexuality being
perverse may be based on the fact that homosexuality is a statistical minority.
But statistical minority and normality are different concept. Left-hand is a
statistical minority, but not abnormal or perverse. The other argument is the
prejudice that takes heterosexuality as normal in connection with the
conception of the end of sex being reproduction. However, with the wide use of
contraceptives and family planning, the argument has lost its force.
There are two arguments for the proposition of homosexuality being immoral. Deontological
argument: homosexuality violates the Confucian ethical principle of 'filial
piety', one of which requirements is extending ancestor's life - "There
are three vices which violate the principle of filial piety, and the biggest
one is no offspring", or "sex has no its own end, it is only for
reproduction". The consequentialist one is that homosexuality will cause
negative effects on others and the society. But both are untenable.
The conclusion should be: homosexuality is normal and not immoral as the
same as heterosexuality. In the case that we cannot reach consensus on the
conception of homosexuality, we should first reach a consensus on providing HIV
education, information, counseling and healthcare services to this minority.
3G2. Prostitution: Between humanity and commodity
Guo-mei Xia, Shanghai Academy of Social Sciences, China
Prostitution, clearly related to HIV/AIDS, is taken seriously by the present
Chinese government. Although all kinds of prevention and punishment measures
have been adopted, the situation is getting worse, particularly with the fierce
competition in market economy and with the widening of income gaps. There are
two different viewpoints on the problem of prostitution in academic circles.
The people who adhere to Marxist and Chinese traditional moral standards,
harshly condemn the criminality of prostitution and the immorality of spreading
STDs and HIV/AIDS and agree to take strong measures against it. Others, who
take the perspective of either Western liberalism, or the subculture of
prostitute females, or male chauvinism point to the inevitability of
prostitution and suggest reasonable control over STDs instead of forceful ways.
Prostitution as a sexual service vocation does not violate the morality, and
its existence should be permitted in some reasonable range. The problem now is
how to find a feasible way between these two opposite theories.
I think, from the viewpoint of feminism, the punishment of female
prostitutes only reflects the moral hypocrisy of the patriarchal society. After
investigating and visiting about one hundred and fifty female prostitutes, I
found that nearly all of them are disgusted with clients in varying degrees.
Sexual activity with true love is pleasure, but sexual service without love is
suffering. But according to the commodity-oriented view, prostitution is
interpreted as evidence of access to equality, and choice of free vocation. We
must draw a line between the humanity-based approach and the commodity-based
approach, and make great efforts to change the social and cultural context in
order to strive for equality between men and women and enhance women's
consciousness of the integrity of humanity even when we can't actually solve
the prostitution issue.
3G3. HIV/AIDS and prostitution: A feminist perspective
Jin-Ling Wang, Zhejiang Academy of Social Sciences, China
The spread of HIV/AIDS in recent years has been a world-wide trend. There is
a common view that commercial sex is one of the most important ways of
spreading HIV/AIDS and women sex workers are a high risk group and therefore to
be blamed. This is wrong. First, one of the important factors to the spread of
HIV/AIDS is the shortage of safety precautions in commercial sex and not
commercial sex itself. A 1995 survey on HIV/AIDS in mainland China on 3297
prostitutes found that the percentage of prostitutes who use condoms in
commercial sex trade 'every time' was 13%, 'often' 6.7%, 'rare' 14.6%, and
'never' 65.6. It is the male visitors but not women sex workers who should take
the main responsibility for the non-use of any safety precautions. Secondly, it
is a fact that in some cases healthy male clients are infected with HIV by
women sex workers in commercial sex, but also vice versa. Thus, the idea that
women sex workers are more dangerous than their male clients should be
challenged. Thirdly, women sex workers with HIV are patients who have other
kinds of diseases; HIV/AIDS is an occupational disease like others, if sex
service is regarded as a job.
From a humanitarian perspective, the first thing we should do for women sex
workers with HIV is to treat the disease and care for the women patients, but
not criticize them on moral grounds. To protect women sex workers from HIV/AIDS
effectively is more important rather than blaming them simply as demoralized
law-breakers. Furthermore, there are various causes for those women to become
sex workers or be engaged in commercial sex. For example, a survey completed by
389 prostitutes in Zhejiang Province conducted in 1990 found these responses to
the following questions: 1) what are the direct causes that lead a prostitute
to be engaged in commercial sex: "disappointed in love or for love"
15.9%, "be instigated by somebody" 13.11%, "neglected or doted
by their parents" 13.11%, "retaliate against man" 12.34%,
"domestic economic difficulty" 11.82%, "abandon themselves to
despair" 9.78%, "be at odds with husband" 9.54%, "seek
pleasure" 5.66%, "try sex" 3.86%, "look for protection and
care" 2.57%, and "the need of sexuality" 1.29%.
In conclusion, it is essential to improve the quality of women's lives and
existing social conditions, and to reduce factors that force women to be
engaged in high risk commercial sex. Elimination of discrimination, promotion
of equality between genders, and provision of more opportunities for employment
and education to women. This would help get rid of poverty and illiteracy and
that would be extremely helpful to prevent and control HIV/AIDS spread.
3G4. Sex education for adolescents
Anjie Xu, Chinese Academy of Social Sciences, China
The findings of the surveys made by Professor Xu Ling and her colleagues,
"A Survey on Abortion in Adolescents: Situation and Psychology" and
"Sex Education and Adolescent Pregnancy - A Survey on 2227 Cases of
Unmarried Adolescents" show that the pregnancy and abortion of adolescents
have become an important social and health problem in China. The pregnancy and
subsequent abortion did a lot of harm to adolescents in the present social and
cultural context in China. To foster prevention, it is necessary to provide sex
education and counseling to them, to provide physical, psychological and social
care to them from family and society, and to take more lenient attitudes toward
their pre-married sex behavior. The effects of providing contraceptives and
gender education to adolescents is also discussed.
3H1. The woman and contemporary biomedical ethics: Legacy, paradox and affirmation
R.R. Kishore, MHW, India
Fast advancing biotechnology, increasing quest for well-being - and for
better being - commercialization, and the evolving moral concepts have led to
redefinition of human biological and social relationship. In this context the
women who have long been conceived as "housewife", "procreator,
"barren", and "infertile" have attained new-found identity
as "pregnancy preventer, "foetal carrier', "ovum-provider and
"surrogate". Intrinsically, holism and innocence of motherhood is
being replaced by legalism, artificialism and foetalism. Technicalisation and
commercialization of woman's reproductive potential has led to differentiation
of motherhood into gestational, biological and social. The natural and
spontaneous maternal-foetal relationship has turned into compulsory obligation
which , at times, is adversarial, severely curtailing the woman's freedom.
Mandatory procreative interventions, restrictions and prohibitions have been
leading to breach and circumvention of woman's autonomy. At times she is the
target of experimental reproductive technologies. Entry of woman into hitherto
male-dominated professions has not correspondingly liberated her from the
bondage of domestication and child-care. The woman is thus a victim of
biological, social and legal stress and is quite often the subject of
theorization and over-expectation leading to legal battles and judicial
enforcements. It is therefore necessary to explore the genesis of the
prevailing milieu. Is it a candid and inevitable expression of biotechnological
advancement and socio-economic transformation? Or, is it an attempt to utilize
the woman's faculties as a tool to materialize the urge of those who have the
power and art of molding the patterns of social behaviour?
It is true that the women cannot remain immune against conceptual evolution
generated by the march of science and technology. But it is equally true that
the contemporary approaches applicable to woman continue to reflect the ancient
and medieval legacy of gender-oriented doctrines. In the Indian context the
woman has always been perceived in a strange paradox. On one hand she is
worshipped as a deity while on the other she is a victim of infanticide,
neglect, and exploitation. In order to ensure a distinctly positive role which
the women have to play in the society it is imperative to evolve sound and
well-founded ethico-legal paradigms, consistent with the new world order,
founded on ethics, liberty and equality. In this paper I have endeavored to
analyze the prevailing bioethical environment surrounding the woman,
particularly in the context of perinatal situations, assisted reproductive
technologies, surrogacy, HIV/AIDS and medical experimentation.
3H2. Public patients
Julia J Bartkowiak, Clarion University, USA
There has been extensive discussion within the United States concerning the
disproportionate use of poor people as subjects of medical research. However,
little attention has been paid to the commonly accepted use of poor patients to
train physicians. Many teaching hospitals use the poor as patients on whom to
practice medical procedures; medical students learn to be physicians by
practicing techniques on the poor. Since the majority of poor patients who
receive medical treatment in these institutionalized settings are female,
medical training encourages negative attitudes toward women. In addition, some
of the training, such as the delivery of a baby using forceps, is particular to
women. Thus, poor women are regularly subject to procedures that may not be
necessary or beneficial to them in order to train medical students. The
justification for this common practice has been Utilitarian - women are being
sacrificed in order to provide society with qualified physicians. This argument
is seriously flawed. In fact, the training of physicians within the United
States ensures that poor women continue to be considered less valuable and
expendable for the good of society.
3H3. Apartheid, patriarchy and scientific discourse: Women, health, and
human rights in South Africa
Jeanelle de Gruchy and Laurel Baldwin-Ragaven, Health & Human Rights
Project, South Africa
Apartheid stripped South Africans not only of their fundamental human
rights, civil and political, but also grossly violated their social and
economic rights, leading to profound social injustice. This paper examines the
role of science and the health professions in the area of reproductive health
during apartheid South Africa. We discuss reproductive agendas and policies,
and their earlier influences in South Africa, to explore the complex
interconnections between science, gender, 'race' and nation-building. Our
thesis is that health professionals were complicit with a system that
constructed South African women primarily as reproductive bodies and
manipulated their reproduction for political purposes. We focus on the accountability
of the health profession for its unethical role in controlling the reproduction
of black and white women.
Encouraged by the new South African Constitution and Bill of Rights, and
recent legislation specifically protecting the reproductive rights of women,
this paper contributes to the on-going process of understanding the abuses of
the past in order to develop a culture of respect for human rights in the
health sector. As part of this endeavor, we need to continue to challenge the
legacy of apartheid thinking and the racist and sexist constructions of women
by the health profession.
Note: The 'racial' terminology used in this paper employs categories
legislated by the apartheid state. We submit that 'race' is a social construct
that serves particular political purposes, and in no way do we suggest that
'races' exist as essential groupings.
3H4. Feminists' paradox in relation to the reality in Bangladesh
Hasna Begum, Dhaka University, Bangladesh
Bangladeshi societies are dominated by patriarchal ideals; both rural and
urban areas are patricentered. In the capital Dhaka, there are mainly two
feminist organizations: one liberal and the other radical. There are individual
women who believe in feminism but do not belong to any of the two groups. In
rural areas women are illiterate, superstitious, undernourished, neglected and
oppressed by any standard and in all aspects of life. In urban areas women,
except the slum dwellers, are given education mainly for the sake of the
prestige of respective families and for prospective better marriages. They are
also better fed and have more freedom of movement. This is the case mostly as a
means and not generally thought to have any intrinsic value. In this scenario,
living in this country is torturous for a true believer in the equality of the
sexes and also in the principle of reverse discrimination favoring women in all
aspects of life, including property, marital, sexual and reproductive rights.
Such a feminist, as a consequence, becomes frustrated and falls in paradoxical
position since her/his theory and practice cannot be met in a country where the
rights of women regarding property and marriage as included in the Convention
on the Elimination of All Forms of Discrimination Against Women (1979) by the
United Nation have been formally rejected in favor of religious moral and legal
codes as dogmas. The feminist groups demanded acceptance but their attempts are
not yet fruitful. The reasons, to be honest, are: their commitment is not
strong enough, and most feminists belonging to the groups either have political
motives or have privileges which enable them personally to remain in
comfortable positions in the present situation.
3I1. Chinese population policy--good choice or right choice?
Re-Feng Tang, Chinese Academy of Social Sciences, China
The paper is not intended to argue that Chinese population policy is good or
bad, right or wrong; it is to argue that right thinking regarding this
population policy should concentrate on goodness instead of rightness. The
first part of the paper points out that Chinese thinking of population policy
is the one concentrating on goodness while the western one concentrates on
rightness. In the second part, I ascribe these two ways of thinking to two
kinds of ethics, that is, good ethics and right ethics, and conclude on the
bases of Gilligan's feminist ethics and Dreyfus' phenomenological studies in
moral development that good ethics is more mature than right ethics. In the
third part of the paper, I shall analyze the implications of good ethics on
population policy.
3I2. A dilemma about women's reproductive autonomy
Zhu Wei, Shanghai Medical University, China
By women's autonomy in reproduction, we mean conscious and autonomous
choice. Women decide whether to reproduce or not, when to reproduce, how many
to reproduce, at what intervals to reproduce, and using what methods of
contraception. Women, being the subjects of reproduction and immediate bearers
of the consequences of sexuality and reproduction, should be entitled to
independent choice and final decision making on this issue. The problems
Chinese women face over autonomy in reproduction, as will be elaborated in the
paper, are the result of interference from various sources, like inappropriate
public policies, a boy-oriented cultural tradition, and the focus of a new
market system on efficiency, competitiveness, and economy. It is obvious that
the reason women lack autonomy in reproduction does not lie primarily in their
lack of awareness of autonomy but lies in the overwhelming genetic, social,
cultural, historic, and economic force that is laid upon them from birth. To
help guarantee their autonomy in reproduction calls for dismantling these
conditioning forces. Here are a few suggestions: 1) Women's status and role in
reproduction must be evaluated. 2) The formulation and implementation of laws
concerning reproduction should be woman-centered and should take into full
account women's needs and rights. 3) Women, in general, should be provided more
chances for education and for realization of their personhood and their goals.
3I3. Domestic violence in China: Facts, causes and measures
Jiaxiang Wang, Department of English Language, Beijing University of Foreign
Language, China
Domestic violence is one of the important issues facing women today. It cuts
across cultures, classes, social systems, and economic and educational status
of the individuals. It has existed since male domination over the females was
established, but has come to the attention of feminists relatively recently. In
China we started to talk about it as a serious issue not more than a decade
ago. A 1994 investigation in Beijing (2118 families) shows that 21.3% of wives
suffered from various degrees of battering. Psychological and sexual abuse
practices have been widely practiced and are only beginning to be looked at.
Among the causes are: 1) Traditional feudal Confucian ideas: "a wife
married is like a horse bought, to be ridden and whipped at will",
discrimination against women who had daughters only (aggravated by the
one-child policy), the home is the last private domain of man and wife and
children his private property. 2) Women lack awareness (esp. in rural areas)
which leads to increased tolerance toward domestic violence because it is an
expected norm. 3) Market economy and increasing importance of money in family
relationships; more women are laid off compared to men. 4) Previously effective
measures against domestic violence are now greatly weakened: moral values and
mediation by 'work units' is now almost non-existent. 5) The increased stress
of a competitive society causes some males to try to assert their power over
those regarded as weaker, mainly the wife and children. 6) The negative and
disempowering influence of the media. 7) Ignorance of the law, on the part of
both men and women; existing laws are too general and hard to enforce, with law
enforcement personnel tending to turn a blind eye towards family quarrels. 8)
Marital rape: Most husbands believe that any sex within marriage is legal, and
that marriage means that a woman has once and for all signed a contract to
provide sex to the husband whenever and wherever he wants it.
Some measures that shall be suggested are: 1) Continue with the education
against sexual discrimination. 2) Start courses at school and in communities to
give instructions on how to deal with problems that arise in the marriage. 3)
Improve existing laws to make them more applicable, develop a Family Law and a
court to deal specifically with domestic violence issues; marital rape should
be regarded as rape. 4) Establish a supportive network, including the police
and communities to effectively stop domestic violence, give support to the
victims and counseling to the abuser, and educate the public in general. 5)
Improve women's economic situation, provide free training to rural women and
urban laid-off women, provide loans if needed.6) Provide legal education to
both men and women so everybody knows that wife and child abuse is punishable
by law and that the community has the duty to give support to abused women and
abused women have the right to resort to the law to protect themselves. 7)
Violence and discrimination against women in the media should not be allowed.
3I4. Reproductive health: A feminist perspective
Ren-Zong Qiu, Chinese Academy of Social Sciences, China
In the beginning of 1993 a program in Reproductive Health and Ethics was set
up by Institute of Philosophy, Chinese Academy of Social Sciences under the
sponsorship by the Ford Foundation. The purpose of the program is to develop an
inter-disciplinary and inter-sectorial dialogue on the social, ethical, legal
and policy issues in reproductive health in China and provide ethical
guidelines and action recommendations on reproductive health issues to the
government on the basis of this dialogue. The topics which have been discussed
include: Epidemic of STD and Its Countermeasures; Reproduction, Sexuality,
Ethics and Women's Rights; Family Planning, Ethics and Human Values; HIV and
Prostitution; Domestic Violence and Marital Rape. The approach to these issues
from gender and feminist perspective featured the dialogue developed. It made
us to see something which had been invisible before, such as the benefits and
costs brought by the current policy of family planning, the vulnerability of
women to the epidemic of HIV, women as victims of domestic violence etc. We
reached the conclusions that the primary goal of any action concerning
reproduction and sexuality should be physical, psychological and social
well-being of all persons, especially of women, and their families, but not
only the figures of population control, women should be the subjects in these
actions not merely objects, the actions in reproductive health should be
women-centered, their autonomy should be respected, the principle of informed
should be implemented, women's rights should be effectively safeguarded.
3J1. Women's views on health in times of social change
Viola Schubert-Lehnhardt, Halle, Germany
Sometimes the unification of Germany is seen as the greatest social
experiment in modern times. Even if we do not agree with this ironic statement
we can image the enormous social changes for the inhabitants in the eastern
part of Germany. One of the fields where change came very rapidly and had
enormous consequences was the field of health care service. Changes in the
social system in these countries have had different effects on men and women.
This is true in all fields including health care, health behavior, and thinking
about the value of health. After 7 years of a united Germany we are starting a
pilot project for testing this special matter. This point in time is very
effective for such an introduction, because just in July 1997 a new step in
health care reform came into affect in Germany. So we have had two
"natural borderlines" for the "social experiment": the
unification of Germany and the start of new laws in health care reform with its
special consequences.
In all main fields we can find gender differences: 1). Opinions about
health: For women the existing change in the field of work is an unavoidable
part of their idea of health. 2). Healthy behavior: Women evaluate both the
individual and the social conditions for healthy behavior as more important for
the stabilization of health than men. The most important point for them is the
increase of prophylactic offers by the Health Insurance schemes. In contrast to
men (who prefer to do their own activities like sport), women prefer more to go
to physicians just for health check-ups 3). Evaluation of new medical methods:
Women evaluate the new diagnostic and therapeutic facilities more highly than
men, but they are also more afraid of the social and financial consequences of
these developments. 4). Consequences: Women more than men would prefer other
alternative developments in health care services.
3J2. Virtue theory and biomedical ethics: A feminist approach
Beth Goldstein, Brooklyn, USA
Medicine as it is currently and has been historically practiced, contains a
great deal of embedded sexism and sexist assumptions. I offer a theoretical
framework which allows us to redress these deficiencies and injustices. This
framework is a feminist virtue theory. Virtue theory is particularly well
suited to grounding and articulating an ethic of care. Both virtue theory and
an ethic of care are contextual, flexible, grounded in particulars and in
particular relationships. Both hold that emotions are morally informative, and
amenable to morally guided cultivation. And both employ a notion of the
socially constructed self. After articulating these concepts I examine their
applications to biomedical ethics. First, I claim that it will facilitate a
change in the doctor/patient relation. Second, I claim that such a theory
demands a recognition that medical care occurs within larger contexts, both the
private context of physician, patient and significant others, and the public
context of policy. Privately, this requires that decision making include a
recognition of the patient's relations of emotional intimacy. Publicly, this
theory is extraordinarily helpful in revealing hidden biases in that it demands
we see persons in their contexts as members of various social groups.
3J3. Taking seriously victims of unethical experiments: Susan Brison's conception of the self and its relevance to bioethics
Carol Quinn, Syracuse University, USA
Feminist conceptions of the self can help resolve the long-standing debate
over whether to continue to use the Nazi data despite victims' protests. The
debate focuses mostly on utilitarian arguments (saving future lives) and has
not taken the victims' voices seriously. The Nazi victims claim that using the
data is "an insult," "a final indignity," a
"feasting" on them, and so on. How are we to understand their claims,
and how should that bear on the debate? Starting with Brison's claim that
human-inflicted trauma is self-annihilating, I argue that victims need to
reconstitute themselves by "controlling the narrative." This requires
that they control the use of the data. Someone might object by saying that Nazi
victims will soon be dead and at that point their concerns will no longer be
relevant to the debate. However, I suggest that the victims are not merely
referring to themselves; their argument should apply to all victims of
unethical experiments -- those that happen here "at home," like the
Tuskegee project, and those that happen elsewhere in the world. The larger
issue is about what happens to victims' as person's when secondary harm is
inflicted on them without their consent.