Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Human Genome News, September 1991; 3(3)
The NIH-DOE Working Group on the Ethical, Legal, and Social Issues (ELSI) related to data produced by the Human Genome Project held its fifth meeting on April 29-30 at Los Alamos National Laboratory. The agenda included consideration of regulations proposed by the Equal Employment Opportunity Commission (EEOC) to implement Title I of the Americans with Disabilities Act (ADA), as well as a workshop on genetic discrimination.
With the assistance of Mark Rothstein (University of Houston Health Policy Institute), the working group recommended revisions in the EEOC guidelines designed to prohibit employment discrimination against individuals with disabilities. In its advisory capacity, the ELSI working group forwarded the text to its parent organization, the NIH-DOE Joint Subcommittee on the Human Genome; the subcommittee made a statement consistent with the recommendations. [See report to the subcommittee by Nancy Wexler (Chair, Joint ELSI Working Group).] DOE and NIH cannot issue statements about legislation and regulations, but the subcommittee, as advisor to these agencies, may do so. (See Statement of Recommendations.) The final ADA regulations published by EEOC on July 26 did not address the subcommittee's recommendations. (See Federal Register 56, 35726-56.)
The recommendations were
The working group also recommended that EEOC develop requirements to maintain confidentiality of employee medical records in connection with job-related medical assessments and health insurance claims.
Marc Lappe (University of Illinois College of Medicine), the first speaker in the workshop on genetic discrimination, discussed racial myths and noted that socioeconomic factors have been found to be a much stronger indicator of certain health outcomes than race. He predicted that the Human Genome Project will uncover many disease polymorphisms transcending race and thus will help to blur artificial racial distinctions.
Lappe questioned the relative importance accorded to genetic identity as a predictor of somatic identity, because many body systems have mechanisms that allow genetic change and are highly mutable. He noted that genetic susceptibility to disease can be demonstrated in some cases only under exposure to constant environmental conditions. Further, Lappe discussed evidence that the germ line is susceptible to environmental insults, and he looked to the Human Genome Project to shed light on this vulnerability. Finally, he warned against using genetic data to define normalcy as opposed to identifying deviancy.
Paul Billings (Pacific Presbyterian Medical Center) spoke on genetic discrimination in insurance and employment, which he suggested is fairly widespread. Billings related some of the 37 cases of genetic discrimination that he has reviewed, and he described his proposed 5-year moratorium on the use of genetic information by insurers and employers.
Sue Levi-Pearl (Tourette Syndrome Association) said her organization has received scores of reports that health insurance was denied on the basis of Tourette syndrome diagnosis, although most individuals affected by this disorder have mild cases that never require medical attention. She said insurers are acting not on the basis of knowledge but on the unfounded fear that Tourette syndrome will cause significant medical expenses.
Levi-Pearl also touched on several other issues of concern to those affected by genetic disorders, including protection of privacy, employment discrimination, insufficient genetic counseling resources, and potential misuse of genetic testing.
Troy Duster (University of California, Berkeley) rebutted the assumption that information from the Human Genome Project will simply penetrate society, producing important health outcomes. Instead, he said, some groups may incorporate genetic information in a collective process, as in Tay-Sach's screening, while other groups may be fragmented by the information, as in thalassemia testing in Greece. Genetic information cannot be simply dropped into the social realm without assessing its implications for the affected group, he said, particularly a group at the base of the social order and with few resources. For the Human Genome Project to produce effective health interventions, he continued, we must study how genetic information is received.
Duster noted that genetics and biology were rejected at midcentury as explanations of socioeconomic status and behavior. Within the past 20 years, however, genetics at the molecular level has inspired genetic explanations of alcoholism, crime, mental illness, and intelligence through correlations with population statistics. These genetic theories, Duster fears, may result from studying populations in which certain groups of individuals are overrepresented for social reasons. Duster also cautioned against concentrating on genetic components of multifactorial conditions.
Camille Limoges (University of Quebec, Montreal) identified several areas that should receive the attention of ELSI programs. In addition to "downstream issues," such as regulating the use of genetic test information, attention should be paid to "upstream issues," such as the concepts of normalcy and causality, the unity and diversity of the human species, the conceptualization of scientific research, and the relationship between scientific and public discourse. Limoges noted the need for ethnographic approaches in fields such as genetic screening, where hypothesis testing would be difficult because there is little current knowledge. He emphasized the need to communicate the scientific and social issues of the Human Genome Project and suggested that projects involve science journalists, who are "multipliers" of information. Finally, he recommended an effort to involve graduate students in ELSI projects to ensure a new generation of social analysts, who, Limoges said, will surely be needed.
Reported by Michael S. Yesley, Coordinator, DOE ELSI Program, Los Alamos National Laboratory
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v3n3).
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.