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Human Genome News, July-September 1996; 8(1)
An 11-member committee was appointed in June to review the function and structure of the NIH-DOE Joint Working Group on the Ethical, Legal, and Social Implications (ELSI) of Human Genome Research. As planning begins for the next 5 years, NIH and DOE Human Genome Program staff consider this an appropriate time to determine how best to provide for objective advice on ELSI issues. The committee expects to finish its review and issue a report by January 1997.
The ELSI working group was one of several formed in 1989 to guide the two agencies on the Human Genome Project's research agenda. All the other working groups have finished their tasks, even though the goals have not been completed, and guidance in those areas is now being provided through ad hoc committees.
The ELSI working group initially helped to define the parameters of the research grants program, sponsored regional town meetings to educate the public about the Human Genome Project and ELSI issues arising from research, oversaw the Task Force on Genetic Information and Insurance, and is playing a similar role with the Task Force on Genetic Testing. The working group has also commented on such issues as informed consent, privacy, discrimination, and genetic testing for cystic fibrosis and breast cancer.
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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 (v8n1).
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.
