|Genome Program Infrastructure Section
DOE Human Genome Program Contractor-Grantee Workshop
|191. Human Genome Management Information
System: Making Genome Project Science and Implications Accessible
Betty K. Mansfield, Anne E. Adamson,
Denise K. Casey, Sheryl A. Martin, Marissa Mills, John S.
Wassom, Judy M. Wyrick, and Laura N. Yust
The Human Genome Management Information System (HGMIS), begun in 1989, helps the Task Group of the DOE Human Genome Program (HGP) fulfill its commitment to informing scientists, policymakers, and the public about the program's goals, funded research, and applications. HGMIS products, including the Web sites and a newsletter, have won technical and electronic communication awards and have been reviewed and featured in well-known publications.
The HGP requires contributions from many disciplines to accomplish its goals and to make sure its outcomes are used to their greatest beneficial potential. Through its scientific communication role, HGMIS seeks to (1) help foster such collaborations and (2) make HGP science, resources, and societal implications accessible to nongenome researchers who are using these new tools and data to solve basic research problems traditional to their fields. Additional targeted groups are medical and legal personnel; bioethicists; educators and other professionals who are being impacted by genomics; and the public.
Through its communication of scientific and societal issues to nonresearch audiences, HGMIS seeks to increase public literacy in genetics, thus laying a foundation for more informed personal decision making and policy development. The hope is to maximize HGP benefits while simultaneously protecting against misuse of personal genetic information. To meet the coming flood of court cases involving genetic evidence, since 1995 HGMIS has been participating in a project to educate judges on the basics of genetics and gene testing. Recently, HGMIS has established genome Web pages for the medical community to help them prepare for the new era of molecular medicine.
Print and Electronic Information Resources
Publications. A forum for the wide exchange of knowledge, Human Genome News (HGN) uniquely presents a spectrum of genome-related topics not found in any other single resource. More than 75% of HGN's diverse body of 15,000 domestic and foreign subscribers are non-HGP scientists who would not find this information in their discipline-specific publications. HGMIS also produces the DOE Primer on Molecular Genetics, progress reports on the DOE Human Genome Program, contractor-grantee workshop proceedings, one-page topical handouts, and other related resource material.
Document Distribution. In addition to HGN, HGMIS has distributed more than 175,000 copies of publications requested by subscribers, meeting attendees, and managers of genetics meetings and educational events. About 120 such requests are processed each month.
Electronic Communication. Since November 1994, HGMIS has produced a comprehensive, text-based Web server called "Human Genome Project Information." Through its newly created "Research in Progress" site, the HGMIS server is devoted to topics relating to the science and societal issues surrounding the genome project. The HGMIS Web sites contain more than 1800 text files that are accessed about 3 million times a year. Each month, around 50,000 host computer domains connect to the HGMIS server directly or through more than 2400 other Web sites. HGMIS also maintains Web pages on the human and microbial genome programs, bacterial artificial chromosomes, cDNA full-length sequencing, and genomics meetings for DOE as well as the Genetics section of the Virtual Library from CERN in Switzerland. HGMIS moderates the BioSci Human Genome Newsgroup.
Direct Information Source. Staff members answer individual questions and supply other information about genetics and the Human Genome Project. Around a hundred such queries are received each month via the Website, fax, and telephone. HGMIS reaches diverse scientific and educational groups when the DOE Human Genome Project traveling exhibit and posters are displayed at conferences and public meetings and when staff members make presentations to educational, judicial, medical, and other groups. As more people become aware of the HGP's impact, HGMIS is striving to strengthen the content relevancy of its services to meet the growing and varied demands for information. Comments and suggestions are appreciated.
This work is sponsored by the Office of Biological and Environmental Research, U.S. Department of Energy, under contract No. DE-AC05- 96OR22464 with Lockheed Martin Energy Research Corp.
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