Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Human Genome News, March 1992; 3(6)
The University of Illinois College of Medicine at Chicago (UICM) and DOE sponsored the conference, Justice and the Human Genome, in Chicago on November 8 and 9, 1991. Gerald Moss (UICM) opened the meeting, which was held to discuss the just and equitable use of data generated by the Human Genome Project. Some 135 attendees came from a broad range of fields such as law, philosophy, medicine, medical history, hospital administration, nursing, biotechnology, and public television. Marc Lappé and Timothy Murphy (both of UICM) organized the conference.
Leroy Hood (California Institute of Technology) presented the scientific and historical overview of the Human Genome Project. He cited many advances expected from the project in basic science, biotechnology, and medical therapy, as well as challenges to social and institutional equity.
Daniel Kevles (California Institute of Technology), author of a noted history of eugenics, explained why he thought past abuses would not be paralleled in the use of forthcoming genomic characterizations. The democratic nature of social institutions and a better understanding of the limitations and abuses of genetic interventions should provide adequate safeguards, Kevles said.
Norman Daniels (Tufts University) offered an account and critique of actuarial practices underlying insurance availability and controlling access to U.S. health care. He addressed the important ethical question of how differences in human health should be treated, arguing that health interests must be protected in ways that are independent of genetic need.
Robert F. Murray, Jr. (Howard University) cautioned that genomic characterization of disease will not necessarily bring cures and that genetic "problems" often have moral and social foundations. That is, genetics may be expected to solve problems that result from social inequity rather than from individual genetic incapacity.
George Annas (Boston University) reviewed possible legal regulation of the uses of genomic data to protect the privacy that plays such an important role in American social and political history.
Arthur Caplan (University of Minnesota) discussed ways in which eugenic interests have worked against humanity and how the study of particular groups has sometimes led to disadvantages for them. Even if clear abuses can be avoided, he said, important problems will remain to be considered.
Lori Andrews (American Bar Foundation) discussed genomic information in relation to reproductive rights and ways in which problems arising from the use of such data will challenge the traditional distinction between public and private issues.
Robert Pokorski (North American Reassurance Company) identified challenges that availability of personal genetic data will pose for insurability and access to genomic information in the United States. He noted especially the tensions existing among for-profit ventures, as well as humanitarian concerns about providing adequate health care.
Kenneth Vaux (UICM) offered a theological perspective on the emergence of genomic study and was especially concerned about the way scientific studies could change current visions of human relationships and personal identity.
Leonard M. Fleck (Michigan State University) argued that certain considerations of justice warrant giving moral priority to the development of technologies that could be used to eliminate deleterious genes over the encouragement of other kinds of emerging lifesaving technologies.
Murphy (UICM) addressed ways in which the genome project might work against scientific novelty and moral pluralism. He cautioned against the use of genomic characterizations to reinforce or create new classes of human inferiority.
Closing the conference, Lappé spoke of the need to pay special attention to genetic susceptibility in formulating all public policy. He also raised for discussion the central question of how persons identified with genetic abnormalities will be accommodated through social policies directed at creating adaptive environments.
A volume containing the talks from this conference is being planned under the title Justice and the Human Genome Initiative. The manuscript is under review.
Reported by Timothy Murphy, UICM
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v3n6).
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.
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.