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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