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Human Genome News, January-March 1996; 7(5)

Notre Dame Conference Explores ELSI Issues

An international, interdisciplinary conference on Controlling Our Destinies: Historical, Social, Philosophical, and Ethical Perspectives on the Human Genome Project was held at the University of Notre Dame (UND) on October 5-8, 1995. Sponsored by the John J. Reilly Center for Science, Technology, and Values with assistance from DOE, the conference was designed to create a dialogue on specific and general issues as related to the Human Genome Project. Invitations were extended widely to the scientific, clinical, and humanistic communities.

Following an opening address by science writer Horace Freeland Judson [George Washington University (GWU)], Raymond F. Gesteland (University of Utah) reviewed his large-scale sequencing project. Clinical molecular geneticist Thaddeus Dryja (Harvard Medical School) followed with a specific examination of the genetics of retinoblastoma, with discussion points raised by geneticist David Hyde (UND).

Later sessions dealt with historical issues [John Beatty (University of Minnesota); Lily Kay (Massachusetts Institute of Technology {MIT}); Evelyn Fox Keller (MIT)] with commentaries by Hans-Joerg Rheinberger (University of Salzburg, Austria), Jean Gayon (Universit‚ de Bourgogne, France), and Timothy Lenoir (Stanford University). Vigorous floor discussions concerned the notions of "code" and the language and metaphors used in the Human Genome Project. Beatty presented a historical perspective as it related to DOE's atomic energy work and the national laboratories. The interaction of humanistic and clinical concerns was explored in papers by John M. Opitz (Shodair Children's Hospital, Helena, Montana) and Harvey Bender (UND), with commentary by Jessica Davis (Cornell Medical Center). Opitz raised concerns about the growing "geneticization" of society, in which human beings increasingly are being seen as "readouts" of their genes. This theme recurred in later sessions.

Topics related to the sociology and anthropology of knowledge were addressed in papers by Stephen Hilgartner (Cornell University) and French sociologist and science anthropologist Jean-Paul GaudilliŠre (Institut National de la Sant‚ et de la Recherche Medicale, Paris), with commentaries by Michael Fortun (Hampshire College) and Robert Bud (Science Museum, London). These papers generated discussions concerning the sociology of intercommunicating networks within human genomics and clinical decision-making as seen from a French perspective.

Other sessions offered insights into issues of reductionism, concern about new forms of eugenics, and science-religion questions. Main papers were presented by Kenneth Schaffner (GWU), Arthur Caplan (University of Pennsylvania), Philip Kitcher (University of California, San Diego), Arthur Peacocke (University of Oxford, England), and Kevin Fitzgerald (Georgetown University).

Commentaries were made by Edward Manier (UND), Timothy Murphy (University of Illinois College of Medicine), Diane Paul (University of Massachusetts, Boston), J. Robert Nelson (Texas Medical Center), Ernan McMullin (UND), and John Staudenmaier (University of Detroit).

Caplan's concern with a new form of "homemade eugenics" that might result from the genome project and Kitcher's development of distributive-justice issues surrounding the project's future sparked an active discussion about social applications of genetic knowledge. Five parallel contributed-paper sessions were organized around the philosophy of science, medical ethics, distributive justice and the genome project, and the use of metaphor and imagery in human genetics.

An address by UND President Emeritus Theodore M. Hesburgh was followed by the showing of a short DOE-sponsored interactive teaching program. A final round-table of the participants and a commentary by UND medical ethicist Richard McCormick closed the conference.

Edited conference papers will be issued by UND Press in the series Contributions from the Reilly Center in Science, Technology, and Values. Publication is expected in late 1996.

[Phillip R. Sloan, University of Notre Dame, phillip.r.sloan.1@nd.edu]

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Human Genome Program, U.S. Department of Energy, Human Genome News (v7n5).

Human Genome Project 1990–2003

The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.

Human Genome News

Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.