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.
9am-1pm Methodology in Global Bioethics and Medical Ethics
Darryl Macer, Eubios Ethics Institute, Japan/New Zealand - Welcome and
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
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)
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
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
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
Overdinner: Wendy Orr, Truth and Reconcilation Commission, South Africa - Are medical doctors the only scientists with ethical obligations?
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?
Lunch and FAB Business Meeting
Chair: Anne Donchin, USA; Gwen Anderson, USA; Susan Sherwin, Canada; FAB Country representatives
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
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
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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.
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."
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.