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Human Genome News, October-December 1996; 8:(2)
Leading genome scientists and bioethicists, concerned about the societal impacts of genetic discoveries from the Human Genome Project, met in September at Tuskegee University to address some of the project's implications for African Americans. Attendees noted the significance and appropriateness of the location in that Tuskegee is the county seat of Macon County, Alabama, site of the most infamous government medical experiment gone awry.* Supported by the DOE and NCHGR human genome programs, the 3-day Conference on the Human Genome Project attracted nearly 300 participants to the campus.
The conference brought together internationally recognized scientists, bioethicists, and legal scholars from government, industry, and academia to discuss the ethical, legal, and social implications (ELSI) of the use and misuse of genetic information. Focused particularly on how the data might affect African Americans, the meeting was also a vehicle for students from Tuskegee and other historically black institutions to meet with genome scientists, hear the issues, and explore career possibilities in genomics.
Discussions about Technical, Social, Ethical Implications
In rare "both-sides-of-the-argument" discussions, speakers expressed apprehension about the project and the use of its resulting genetic information. Concerns ranged from the fear of actuarial classifications of "genetic exceptionalism" to the burden African Americans would face if they were among those labeled by some as a biological underclass.
Keynote speaker Ari Patrinos of DOE discussed the current status of the project and DOE's role in this unique biological undertaking. Addressing a concern of most participants, Patrinos stated that, based on molecular evidence, variations among individuals are due to 1 difference in 1000 bases. At the molecular level, therefore, what unites us dwarfs what divides us.
In one of the most discussed presentations, featured speaker and molecular geneticist David Botstein (Stanford University) took on the myths and power of genetic information. Taking exception to the most extreme interpretations of the impacts of the project, he declared that "it ain't going to happen-all this sexy stuff about `perfect babies'!" He said that those apprehensive about the genome project should recognize that genetic information has limited uses. The reality, he stated, is that the project has provided the infrastructure for wholesale, systematic discovery of disease genes, including those for some cancers, at a fraction of the cost and time it previously took to find just one gene. This capability has led insiders to refer to the genome project as the infrastructure on which a whole new industry is being built.
Patricia King (Georgetown University Law Center), an original member of the NIH-DOE Joint ELSI Working Group, recognized the enormous promise of the Human Genome Project. However, she defined two categories of potential problems. The first is whether everyone will share in the expected health benefits, or just those who can afford genetic testing and possible medical intervention. Second is the real danger that simple genetic explanations will be given for human characteristics that actually involve complex social, cultural, and environmental influences. Such simplistic explanations have already been offered (and debunked) with regard to intelligence and violent behavior, she said. King further stated that genetic information might be used to define a biological underclass, consisting primarily of minorities, as unemployable, uneducable, and uninsurable.
Although he agreed that these are very legitimate considerations, Rick Myers, director of the Stanford Human Genome Center, indicated that possible misapplications should not derail current work to develop a highly useful genetic map and to sequence the entire genome. Efforts should be made, however, to make changes in our social system that will minimize these problems in such areas as health care and insurance.
Georgia Dunston (Howard University) and Fatimah Jackson (University of Maryland) brought up other questions. Dunston described her genomic research in the African-American Pedigrees (G-RAP) project at Howard University, developed in response to the absence of such pedigrees in the CEPH DNA panel. Dunston's project has as its primary objective the identification and characterization of DNA polymorphic markers that will be useful in mapping genes underlying diseases or susceptibility to diseases common in African Americans. The long-range goal of G-RAP is to improve the health of African Americans through research on DNA variability. The G-RAP program also provides Howard students an opportunity to receive training and conduct research in genetics, thus increasing the pool of African-American scientists participating in human genome research.
Jackson, an anthropologist, suggested that the genome project is the most important molecular taxonomic effort of this century because it will by definition set the taxonomic norms or baselines for Homo sapiens sapiens (Hss). African Americans should be concerned, added Jackson, about whether their sequence data will be included in the reference taxonomic description of Hss and whether the genome project has followed the best procedures of population biology to ensure equal representation.
Tom Murray (Case Western Reserve University) expressed the fear that genetic information might be misused, especially in insurance decisions and risk classification. Murray indicated that the concept of actuarial fairness requires payment of premiums according to risk. This creates a "catch 22" for individuals who either have a disease or a risk of disease, such as might be suggested by a genetic test. In response, actuary Dave Christianson (Lutheran Brotherhood) stated that insurance factors often are exaggerated and that alternatives exist to lessen the impact of actuarial decisions based on genetics.
In his presentation Luca Cavalli-Sforza (Stanford University), author of The Great Human Diasporas, said genetic evidence suggests that differences among groups are less than those within groups, indicating that racism is a "human sin" not supported by biology. Human population genetics tells us, he continued, that "the enormous continuity in variation makes it almost impossible to define race except in a very, very approximate way. And you would have to say that there are thousands of races."
Summarizing the importance of the meeting, Daniel Drell (DOE Human Genome Program) said, "Rapid progress toward obtaining a reference human genome sequence has heightened the urgency of dealing with the challenging and complex ELSI considerations arising from the Human Genome Project. While many of these issues are not novel, they nonetheless remain difficult and need to be addressed. Nowhere is it more appropriate to acknowledge this than here at Tuskegee University."
[Ed Smith, Tuskegee University]
*Between 1932 and 1972 the U.S. Public Health Service conducted the "Tuskegee Study of Untreated Syphilis in the Negro Male" [http://www.cdc.gov/tuskegee/timeline.htm] to observe the course of the disease. In this study, 600 low-income African-American men, 400 of whom were found to be infected with syphilis, were monitored but treated only with placebos. Participants received no treatment even after a proven cure, penicillin, became available in the late 1940s.
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The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v8n2).
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.
