Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Human Genome News, September 1994; 6(3):10
The DOE Ethical, Legal, and Social Issues (ELSI) Program, administered by the Office of Health and Environmental Research (OHER), aims to anticipate and study how individuals and society will be affected by the large amounts of genetic data being generated through the Human Genome Project. Three years ago, OHER narrowed its ELSI focus to concentrate on genetic education, privacy and confidentiality of personal genetic information, and genetics and the workplace [see HGN 4(2), 1-2 (July 1992) and 5(2), 3-4 (July 1993)].
Now entering its fifth year, the DOE ELSI Program added three new projects and two continuing ones to its portfolio of sponsored activities in FY 1994. To avoid unnecessary duplication of effort, OHER collaborates closely on program oversight with the ELSI Branch of the NIH National Center for Human Genome Research (NCHGR).
In concert with the NCHGR ELSI Branch, the DOE program supported a recently released study by the Institute of Medicine on a range of ELSI issues, with recommendations for informed policies. Studies were also initiated on the implications of large DNA-based databanks and accumulations of data, including those under development by the Federal Bureau of Investigation, the U.S. Army, certain commercial companies, and academic research centers. Exhibits on genetics are being partially supported by DOE at both the San Francisco Exploratorium and the Smithsonian's Museum of American History.
At the University of Michigan Law School, Rebecca Eisenberg is studying the role of patents in transferring technology generated by the Human Genome Project to society at large Eisenberg will review available literature; query industry, government, and university sources about technology transfer; and explore several specific cases to see what works best for rapidly moving new technologies into the marketplace. The results of this study could affect DOE policy far beyond the genome program.
Lee Hood, Valerie Logan, and Maynard Olson (University of Washington, Seattle) have begun an innovative program in which local high school students determine the sequence of STSs (sequence tagged sites) from cloned human genomic DNA. In addition to learning about human genetics, experiencing science firsthand, and contributing to the Human Genome Project by submitting their checked sequences to a DNA sequence database, the students will also explore ethical, legal, and social implications of the project. Insights gained through this experience may encourage some of them to consider the possibility of a scientific career.
At California State University in Los Angeles, Margaret Jefferson and Mary Ann Sesma are translating into Spanish the Biological Sciences Curriculum Study module, "Mapping and Sequencing the Human Genome: Science, Ethics, and Public Policy." They will also introduce it to students in selected Los Angeles high schools. A key element of this approach is to involve parents so that cultural and family sensitivities and values can be incorporated into the study of genetics. In a project that may serve as a pilot for future curriculum development in other subject areas, knowledge about the genome project is being made available to a community not directly addressed by current educational outreach efforts.
Troy Duster's "Pathways to Genetic Screening: Patient Knowledge-Patient Practices" is being renewed for a 2-year term. This project contrasts Caucasian understandings about cystic fibrosis with those of African-Americans about sickle cell disease. Early results suggest that communicating genetic information and understanding immediate health implications vary with factors that include social class, gender, and educational level. Duster also reports that detailed information is best obtained through personal contact and discussion in a familiar environment such as the home, rather than through an impersonal survey or doctor's office visit.
The Cold Spring Harbor DNA Learning Center, under director Jan Witkowski, will continue for another year to hold workshops for opinion leaders and public policymakers on genomics and its implications for society. These workshops are aimed at educating individuals who could assist in introducing Human Genome Project information to society. Workshop attendees have included representatives from the media, genetic support groups, law and the courts, Congressional staff, state legislatures, government and private agencies, policy analysis programs, labor unions, and other organizations.
Potential Benefits vs Challenges
The simple, persistent importance underlying ELSI studies is the recognition that each person has a unique genome that both identifies the individual and has predictive implications for future health. An "ideal" or "perfect" genome does not exist, even if such a concept could be defined. All genomes contain polymorphisms that could severely and adversely affect health under different circumstances or if not influenced or masked by other genes; this information about the individual has value to other people and groups who may have their own agendas. Potential benefits of human genome research for the enhanced health and well-being of humankind are very great, but the challenge is to manage this effort wisely and carefully and, if possible, avoid some of the foreseeable problems.
Daniel Drell, DOE OHER
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v6n3).
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.