pp. 460 in Bioethics in Asia

Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute

Copyright 2000, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.

F35. Selected International Responses to the Human Rights and Ethical Issues Raised by Human Genetics

Sev S. Fluss

Programme Manager for Human Rights, Office of Health Policy in Development, WHO

This paper includes a list of some responses made to the issue of human genetics, and is a summary of the paper given. A more complete list is on the Eubios Ethics Institute web page. It shows a range of bodies have given opinions on these issues.

International Organizations (Global) that have made statements include: WHO gDraft proposed guidelines on ethical issues in medical genetics and the provision of medical services , issued in 1995, being revised 1997-1998; UNESCO Universal Declaration on the Human Genome and Human Rights adopted 11 Nov. 1997; UN Beijing Declaration and Platform for Action (Para 109(1)) was adopted by Fourth World Conference on Women, Beijing, 15 Sept. 1995, and endorsed by the UN General Assembly on 22 Dec. 1995.

Intergovernmental Organizations (Regional) statements include: Council of Europe, Recommendation on prenatal genetic screening, prenatal genetic diagnosis and associated genetic counseling, adopted June 1990; Recommendation on genetic testing and screening for health care purposes, adopted in February 1992; Convention on Human Rights and Biomedicine (Articles 11-14), adopted in Nov. 1996 and opened for signature in April 1997; European Union, Conclusions on hereditary illnesses, adopted by the Council of Ministers for Health in May 1992; Opinion on the ethical implications of gene therapy, adopted by the Group of Advisors in the Ethical Implications of Biotechnology of the Commission in Dec. 1994; Opinion on the ethical aspects of prenatal diagnosis, adopted by the Group of Advisors in the Ethical Implications of Biotechnology of the Commission in Feb. 1996; Resolution on the ethical and legal problems of genetic engineering, adopted by the European parliament in March 1989.

Nongovernmental Organizations (Global) statements include: CIOMS, Declaration of Inuyama, adopted by the XXIVth Roundtbale Conference on Genetics, Ethics and Human Values in July 1990; HUGO Statement on principled conduct of genetic research, adopted by HUGO Council in March 1996; ICSU Statement on gene patenting, adopted in June 1992; FIGO Committee for the Study of Ethical Aspects of Human Reproduction, Statement on donation of genetic material for human reproduction, adopted in 1994.

Nongovernmental Organizations (Regional) statements include: European Medical; Research Council, Recommendations on gene therapy in man, published in 1988; International Symposium on Human Gene Therapy (Inuyama and Nagoya), Statement on gene therapy, adopted in Sept. 1995; 6th Annual Genetic Meeting of the European Alliance of Genetic Support Groups, Ethical code, adopted in London in April 1996; First Latin American Meeting on Bioethics and the Human Genome, Declaration of Manzanillo, adopted in 1996; North American Regional Committee of the Human Genome Diversity Project, proposed Model Ethical Protocol for collecting DNA samples, adopted in 1996.

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