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Human Genome News Archive Edition

Human Genome News, July 1994; 6(2)

NACHGR Holds Tenth Meeting

The National Advisory Council for Human Genome Research was convened for its tenth meeting on January 24 in Washington, D.C., with Francis Collins, Director of the National Center for Human Genome Research (NCHGR), presiding. Harold Varmus, NIH Director, opened the meeting by discussing initiatives and policy issues under consideration at NIH.

One of these initiatives was the NIH intramural program review, which Varmus said was being conducted by a group of extramural advisors. The advisors' report was expected to recommend changes in the allocation of funds, scientific review processes, recruitment procedures, and physical setting. Varmus also announced that Howard Shachmann (University of California, Berkeley), the NIH ombudsman, will serve as the voice of the extramural community. He will meet scientists at universities around the country and bring their opinions of NIH back to the director.

A pilot program is under way to make the NIH peer-review system friendlier, fairer, and more efficient. In the revised system, study sections would quickly identify projects for more-detailed review and dismiss others. This rapid return would let applicants know when they need to rethink their proposals before they reapply. Varmus urged the council to examine grants closely and not rely solely on scores assigned by review panels.

Varmus reported that an Office of Science and Technology Policy forum, held at the end of January, would focus on the important roles of basic science and biomedical research. A series of panel discussions at the forum was to examine NIH embryo research. Varmus also discussed the issue of cDNA patenting.

Collins reported positive feedback on the new 5-year plan (Science , October 1, 1993). [Reprints of the Science article may be obtained from HGMIS; see address .] He also discussed the January Human Genome Organisation Summit Meeting in Houston [see HGN 6 (1), 8 (May 1994)].

At the request of the council, Jerome Cox and David Benton (NCHGR) reported on informatics program status and concerns for the future. Council members raised key questions concerning the adequacy of system capacity for sequencing data, methods for improving communication among biologists and computer scientists, and ways of stimulating interest and training for the computer scientists needed to service database systems. A forum to address these questions and bring together scientists and informatics specialists was planned for the Cold Spring Harbor meeting in May.

Benton presented a concept paper for a program to foster the development of resources and specialized tools for genome research. These services would be supported through two mechanisms: P41 (Genome Research Resource Grant) and R24 (Genome Resource Development Grant). The council approved the concept with a few modifications.

Elizabeth Thomson (NCHGR) introduced for concept clearance an abstract on þTesting and Counseling for Heritable Breast, Ovarian, and Colon Cancer Risks," a proposed request for applications (RFA) [see HGN 5 (5), 6 (January 1994)]. The council approved the RFA release with two qualifications: (1) studies associated with the RFA will be carried out in conjunction with research on the molecular and epidemiological basis of cancer-related genes and (2) genetic testing for heritable cancer risks is considered premature in the general population and should be used only in families where breast, ovarian, or colon cancer has already occurred. To complement the RFA, the council issued a statement on presymptomatic identification of cancer risk [see HGN 6 (1), 6-7 (May 1994)].

The NIH-DOE Joint Ethical, Legal, and Social Implications (ELSI) Working Group has been expanded to consider whether it should function as a deliberative body or promote development of the ELSI grant portfolio. The group has identified four high-priority policy issues: health-care reform, exclusionary testing and possible discrimination by employers, privacy of genetic information, and new genetic tests. Collins stated that the ELSI program is at a critical juncture with no other group stepping into this role, although establishment of a bioethics commission is under consideration by Congress.

Phillip Reilly (Shriver Center) discussed conflict-of-interest concerns surrounding grant awards and made several points about developing NIH guidelines.

Elke Jordan (NCHGR) announced the creation of new workshops to facilitate exchange with other NIH components. This mechanism is expected to be useful in supporting genetics projects that no one institute can fund alone.

The council reviewed 73 applications requesting almost $23 million. A total of 53 applications for over $12 million were recommended for approval.

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Human Genome Project 1990–2003

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.

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