The NIH National Advisory Council for Human Genome Research was convened for its twelfth meeting on September 22, 1994, in Washington, D.C. Francis Collins, Director of the NIH National Center for Human Genome Research (NCHGR), presided. Selected highlights of the meeting follow.
Jeffrey Trent, Scientific Director of the NCHGR Division of Intramural Research, updated the council on the division's activities. The intramural division was established in 1993 to study genes that cause diseases, including cancer, and to focus on medical genetics, clinical gene-therapy research, and development of clinical diagnostic tests. Trent also reported overwhelmingly positive response to the new visiting investigator program, which allows university scientists to use NCHGR resources for 3 to 12 months [HGN 6(2), 7 (July 1994)].
The council discussed a draft mission statement calling for the DOE-NIH Working Group on Ethical, Legal, and Social Issues (ELSI) to report to both the NCHGR advisory council and the DOE Health and Environmental Research Advisory Committee. Collins noted that the White House Office of Science and Technology had proposed establishing a National Bioethics Advisory Commission within the Executive Branch [Federal Register 59(155), 41584-86 (August 12, 1994)]. This advisory commission would consider bioethics issues arising from research on human biology and behavior and applications of that research.
Jane Peterson (Chief, NCHGR Mammalian Genomics Branch) presented a set of guidelines for assessing physical-mapping progress toward Human Genome Project 5-year goals. David Cox (Stanford Human Genome Center) stated that a meeting of center directors had developed reporting standards, and the goal now is to inform the scientific community about reporting mapping data in a common context. The guidelines were published in Science (September 30, 1994).
Peterson led the discussion on limiting ELSI components of NCHGR genome science and technology centers (GESTECs) to 5% of the total budget. She said some GESTEC proposals contain expanded ELSI components, which are reviewed differently from individual ELSI proposals. GESTEC reviewers do not see the full range of ELSI proposals, nor do ELSI review groups see the scientific context of education applications. Rather than establish a policy, the council recommended approaching each GESTEC review on a case-by-case basis. They requested a report on the ELSI portfolio at the January meeting, focusing particularly on education components in ELSI grants and GESTECs.
David Benton (Director, NCHGR Genome Informatics Program) described the informatics meeting of GESTEC directors at which 10 centers were represented [meeting report http://www.gdb.org/Dan/nchgr/intro.html)]. Of issues identified at the meeting, Benton reported significant action to disseminate information on software, database integration, and priority software needs. He also announced that GESTEC informatics staff would hold two meetings during the next 18 months. David Botstein (Stanford University) noted enormous progress in identifying and addressing informatics problems.
Linda Engel (NIH Office of Scientific Review) described NIH and NCHGR reinvention initiatives, including the use of triage for quick response to funding applications and summaries of reviewers' unedited comments and discussions. A proposal has been made that the scientific review office stop calculating recommended budgets, except for GESTECs with priority scores of 200 or higher. Reviewers would give overall recommendations, and applicants would provide detailed budgets at the time of award. This procedure would save time and work for reviewers, applicants, and staff.
The council reviewed 123 applications requesting $31,650,501 and recommended approval for 81 applications totaling $19,437,332.
