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Human Genome News Archive Edition

Human Genome News, March 1991; 2(6)

Workshop on International Cooperation for the Human Genome Project: Ethics

The Second Workshop on International Cooperation for the Human Genome Project: Ethics, sponsored by Fundacion Banco Bilbao Vizcaya and organized by Fundacion Valenciana de Estudios Avanzados, was held in Valencia, Spain, on November 12-14, 1990. Highlights of some of the many papers are given below.

The presentation by Eric Lander (Whitehead Institute for Biomedical Research and Massachusetts Institute of Technology) set the theme of the workshop. He said that gene mapping is the best way to find cures for genetic disorders, but the hiatus between the ability to predict and the ability to cure, as well as society's impatience in wanting to use research results prematurely, will raise challenging ethical questions.

Hans-Martin Sass (Ruhr University, Germany) described a rancorous debate occurring in Germany, where alternative groups have challenged genetic diagnostics as eugenic public health policy and bioethics as intended merely to gain acceptance of risky technologies.

Several speakers on religious considerations focused on differing attitudes toward reproductive intervention. The Catholic and Islamic speakers rejected any use of in vitro fertilization. The Jewish and Protestant speakers rejected absolute prohibitions and insisted, instead, on evaluation to ensure benefit and prevent misuse of genetic technology.

Eric Juengst [Director, Ethical, Legal, and Social Implications (ELSI) Program, NIH National Center for Human Genome Research] suggested that stigmatization and fatalism may be avoided by interpreting genetic risk markers in terms of contingencies, rather than predispositions, to emphasize the ability to protect individuals through nongenetic interventions.

Theodore Friedmann (Center for Molecular Genetics, University of California, San Francisco) observed that the question of appropriate target conditions and traits will become increasingly difficult. Albert Jonsen (University of Washington, Seattle) predicted that genetic information will reshape the traditional doctor-patient relationship, focusing more attention on family than individual, and creating presymptomatically diagnosed "unpatients" for whom no therapy is yet available.

Regarding the use of genetic information, John Fletcher (University of Virginia) reported international consensus on what guidelines for human geneticists should be. Dorothy Nelkin (New York University) advised paying heed to popular beliefs about genetic information in promoting its use. Neil Holtzman (Johns Hopkins School of Medicine) noted that individual autonomy can be reduced by screening and that public expectations need to be aligned with the limits of genetics.

Mark Rothstein (University of Houston Law Center) discussed the conflicting interests of individuals, employers, and society in preemployment screening. G. W. de Wit (Erasmus University, Rotterdam) argued that genetic information will be useful to insurers only in the case of single-gene diseases and, in such case, equality of information between insurer and insured must be enforced, at least for life and disability insurance.

Helen Donis-Keller (Washington University) described a commercial arena in which uniform laboratory standards have not been set and noted that competition does not necessarily produce high-quality results. Norman Fost (University of Wisconsin) discussed several issues related to carrier testing.

Daniel Kevles (California Institute of Technology) suggested that eugenics may continue to mislead, not for lack of good intentions, but simply because conclusions are scientifically wrong. Benno Muller-Hill (Genetics Institute, University of Cologne, Germany) argued for the sole right of the individual to know his or her genotype. William Bartholome (University of Kansas) called for the establishment of mechanisms to control the application of new genetic knowledge.

Conference speakers generally did not question the value of the Human Genome Project but expressed concern about genetic information uses and called for further ethical inquiry and public education.

The conference concluded with the presentation to Queen Sofia of the "Valencia Declaration on Ethics and the Human Genome Project," summarizing the participants' deliberations.


Written by Michael S. Yesley
Coordinator, ELSI Activities
DOE Human Genome Program
Los Alamos National Laboratory

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