ELSI Research Advisors (ERA)

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services

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ELSI Research Advisors (ERA)

ERA Mission, Administration and Structure

The Ethical, Legal and Social Implications (ELSI) Research Advisors (ERA) was established in February 2000. A working group of the National Advisory Council for Human Genome Research (NACHGR), the ERA has 12 members with expertise in ELSI research.

The ERA meets twice each year. Every three years, the ERA submits to the NACHGR a report on the effectiveness of the ELSI research program in fulfilling its mission and attaining its goals. This report also provides recommendations to strengthen and enhance the program. The ERA's reports are presented to the NACHGR during the public session of one of its meetings and are also posted at the NHGRI website.

May 2003 ERA Report to NACHGR

Wylie Burke reported on the April 15, 2003 of the ELSI Research Advisors (ERA). The committee discussed how the ELSI program needs to proceed in light of the outcome of the NHGRI planning process. ERA currently has ten members, including four new ones (Paul Miller, Scott Ramsey, Arti Rai and Sarah Tishkoff). The new membership reflects ERA's desire to represent new areas of research.

The current ELSI portfolio is strong in several areas, including support for a broad array of social science research, in-depth studies of certain topics, and studies in several other areas of high interest (patenting, insurance discrimination, use of race as a variable in research). However, there are also several areas of weaknesses: certain research areas are under- represented; there are few minority investigators; there is no "rapid-response" mechanism; and the impact of education projects has been limited.

ERA concluded that:
ERA also identified three areas for emphasis in the near term:

Dr. Nickerson asked about the need for a standing review committee for ELSI applications. CSR and NHGRI staff are working to formally establish a committee in CSR. Such a group has been operating on an ad hoc basis. Council discussed the potential ramifications of the recent court activity regarding diversity criteria in university acceptance and the use of budget set-asides.

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Last Reviewed: December 26, 2013