Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Human Genome News, July 1992; 4(2)
Daniel Drell, DOE Office of Health and Environmental Research
In a significant departure from other previous large-scale scientific undertakings, the U.S. Human Genome Project specifically supports studies on ethical, legal, and social issues (ELSI) that can arise from the increasing availability of genetic information about individuals and populations. The decision to establish the DOE ELSI program, which is now in its third year, was spurred by the early realization that while human genome research itself does not pose any new ethical questions, use of the research data could raise very challenging issues. Among these issues are the ability to predict future disorders before any therapies or interventions are available; the privacy and confidentiality of genetic information with respect to employers, insurers, and others; and the possible misuse of genetic information for discriminatory purposes.
The DOE ELSI program, a complement to the program managed by the NIH National Center for Human Genome Research (NCHGR), focuses on the privacy and confidentiality of genetic information; this area includes the role of computers in assembling, storing, organizing, and manipulating genetic data. With NCHGR, DOE also seeks to educate the public in the use of genetic knowledge for informed decision making. During the past 2 years, the DOE Office of Health and Environmental Research (OHER) has spent more than 3% of its genome budget on the ELSI program.
An important feature of the U.S. Human Genome Project is the close cooperation and coordination between the DOE and NCHGR ELSI programs. As part of this collaboration, the first joint DOE-NIH ELSI grantee workshop will be held September 14-16 in Arlington, Virginia.
Other collaborative activities include a major 2-year study conducted by the National Academy of Sciences Institute of Medicine on "Assessing Genetic Risks"; this research is expected to result in a report early in 1993. DOE and NIH are also working together on studies to (1) explore differences among state-supported genetic testing, screening, and counseling programs and (2) compare the use of genetic screening services and genetic information in two communities with contrasting disease susceptibilities. Two additional cooperative ELSI activities are the National Study Conference on Genetics, Religion, and Ethics (convened in March in Houston, Texas) and a public television series, "Medicine at the Crossroads," produced by WNET/Thirteen in New York and scheduled for broadcast late this year.
OHER is supporting a study to assess the significance of genetic discrimination in various settings such as schools and workplaces. Repeated public meetings, congressional hearings, and a diversity of publications have indicated that the possibility of discrimination is one of the principal fears associated with the wider availability of genetic knowledge. A second investigation focuses on legal protections already available for genetic information, balancing public-health needs with respect for individual privacy.
In education, an area of great importance to OHER, two new projects are being started:
In the coming year, OHER will continue to refine the focus of its ELSI program toward the privacy and confidentiality of genetic information, continue an emphasis on education, and collaborate closely with NCHGR to avoid unnecessary duplication of effort. While important ELSI concerns accompany the Human Genome Project, the primary aim remains the enhanced health and well-being of each individual. The ELSI challenge is to conduct this effort as wisely and carefully as possible.
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v4n2).
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.