Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Human Genome News, November 1990; 2(4)
The NIH-DOE Working Group on Ethical, Legal, and Social Issues (ELSI) related to data generated by the Human Genome Project held a workshop September 10-11 in Rockville, Maryland, to discuss research and policy development needs concerning the introduction of new genetic tests into clinical practice.
At its last meeting in February, the ELSI working group gave this topic high priority for NIH and DOE programs. They also identified several sets of professional and social policy issues whose impact will be significantly broadened by the expected acceleration of genetic test development and the increased number of people likely to become candidates for testing.
These issues include quality control of test development and performance, professional responsibilities of clinicians conducting tests, the psychological impact of genetic testing on patients and family members, confidentiality of and access to test results by third parties, and the cost of testing and counseling.
The working group sought to gain more information about these questions by focusing on the recently developed test for the cystic fibrosis (CF) gene. This test provides an important example because of the gene's relatively high frequency in the population and the clinical variability of CF. Protocols for integration of the CF test into medical practice could set important precedents for future genetic test development and use.
To identify research and policy development needs, the ELSI working group invited perspectives on the evolution of CF testing from several groups, including:
A session was devoted to a review of CF detection and to reports on trial CF testing programs in the United Kingdom and Denmark. Another session identified research and policy needs revealed by experience to date. The working group then met with members of NIH and DOE staff to discuss plans for implementing ideas raised at the workshop.
Identified research and policy development needs include:
For further information about the ELSI workshop, contact:
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v2n4).
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.