Ethical, Legal and Social Implications Research Program
ELSI Research Advisors (ERA) Group Mission, Administration and Structure
In July 1997, the National Human Genome Research Institute's (NHGRI) National Advisory Council for Human Genome Research (NACHGR) and Department of Energy's (DOE) Biological and Environmental Research Advisory Committee (BERAC) established the ELSI Research Planning and Evaluation Group (ERPEG). ERPEG's mission was to review and analyze the portfolio of ELSI research grants at both NHGRI and DOE, to participate in the development of the ELSI component of the new five year plan for the U.S. Human Genome Project, and to prepare a report for submission to NACHGR and BERAC summarizing its findings. The final report, which was released in February 2000, contained 14 recommendations to enhance the ELSI research programs at NIH and DOE. Two of these recommendations concerned the formation of an ongoing ELSI research advisory body:
... NHGRI and DOE should establish an ongoing joint planning and evaluation group to ensure that their ELSI research programs continue to identify and address the most important implications of human genetic and genomic research.
If administrative and other concerns preclude the formation of a joint NHGRI/DOE body, mechanisms should be established to ensure that there is continued interaction and coordination between the two programs.
After careful consideration of a number of structural and administrative issues, the NHGRI and DOE have decided that the ELSI advisory function should be administered independently by each agency. In keeping with this decision and in response to ERPEG's recommendations, the NHGRI will establish the ELSI Research Advisors (ERA) group. This group will be administratively distinct from DOE's ELSI advisory group, but will be structured in such a way that interaction between the two groups is assured.
The mission of the ERA will be to:
- Evaluate the NHGRI ELSI research program's progress toward the goals set forth in the Five-year Plan for the Human Genome Project: 1998 - 2003.
- Assess progress on the implementation of the other recommendations contained in the Final Report of the ELSI Research Planning and Evaluation Group.
- Continually evaluate the appropriateness of these goals and recommendations given the rapid changes in genetic and genomic research and its ethical, legal and social implications.
- Identify emerging issues and new priority areas that may require additional attention in the ELSI research portfolio.
- Identify new administrative or staffing issues that may require attention.
- Identify areas of potential overlap or collaboration between the DOE and NHGRI ELSI programs.
- Participate in the development of future strategic plans, milestones or goals for the ELSI research program.
Administration and Structure
The ERA will be established as a working group of the NACHGR. ELSI Research program staff at the NHGRI will provide administrative support for the group and one of the ELSI program directors will serve as the group's Executive Secretary.
The group will have two regularly scheduled meetings each year. Additional conference calls or sub-group meetings may be scheduled as needed. The ERA chair will give a brief annual presentation to the NACHGR describing the group's activities. Every three years, the group will submit to the NACHGR a written report summarizing the group's analysis of the effectiveness of the ELSI research program in fulfilling its mission and attaining its goals. This report also will provide recommendations to strengthen and enhance the program. These written reports will be presented to the NACHGR during the public session of one of its regularly scheduled meetings and will also be made available on the NHGRI home page and disseminated through other media.
Membership and Structure
The group will include 10 to 12 Individuals who have collective expertise in a broad range of fields relevant to ELSI research and education activities. The mix of disciplines represented by the group members will, at a minimum, include bioethics, genetics, social sciences, law and education. The group also will have representatives from diverse communities and include at least one consumer or member of a health advocacy group.
Members will serve four-year terms. The terms of the first group of members will be staggered so that no more than three members will rotate off in a given year. Two to three members will rotate off the first year, two to three in the second year, three to four in the third year and three to four in the fourth year. In the interest of continuity, the initial membership of the group will include at least one former member of ERPEG. To facilitate communication with the NACHGR, at least one ERA member will also be a member of NACHGR.
In order to ensure that there is continued interaction and coordination between the ELSI Research programs at NHGRI and DOE, one member of the group will serve as an ex-officio member of the DOE ELSI advisory body. In addition, a member of the DOE advisory group will serve as an ex-officio member of NHGRI's group. These individuals will act as liaisons between the two groups and will help ensure that the current complementary nature of the two programs continues. To supplement and strengthen these efforts, DOE and NHGRI ELSI staff will provide regular updates to their advisory groups on the ELSI activities of the other agency and will meet on a regular basis to discuss program plans and activities, and to identify possible areas of collaboration and overlap.
Last Reviewed: February 28, 2012