DOE Human Genome Program Contractor-Grantee Workshop VIII
February 27-March 2, 2000  Santa Fe, NM

141. The 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 D. Mills, John S. Wassom, Judy M. Wyrick, and Laura N. Yust

Life Sciences Division; Oak Ridge National Laboratory; 1060 Commerce Park; Oak Ridge, TN 37830

bkq@ornl.gov

www.ornl.gov/hgmis

The large, multidisciplinary Human Genome Project (HGP)--the effort to find all human genes and characterize a reference human genome--promises to revolutionize the future so profoundly that this century has been dubbed the "biology century." Applications of information and technologies derived from the HGP era of the late 20th century will affect almost everyone. Entirely new approaches to biological research and the practice of medicine and agriculture will be implemented. For an unprecedented understanding of the inner workings of whole biological systems, genetic data will provide the foundation upon which research from many biological subdisciplines will be layered. Because the multidisciplinary research model fostered by the HGP will continue, integrative approaches to understanding complex biological systems are likely to replace the reductionist strategies now prevalent.

Commercialization of numerous applications in genomic science is fueling the burgeoning life sciences economic sector. Legislation and litigation increasingly will be concerned with genetics and the intellectual property issues pertaining to genetic information. Educators, the media, students, and the public need a good understanding of the "new genetics" and its implications to communicate, teach, and help people make related career and personal decisions. Democratizing access to genetic science information should help maximize HGP benefits while protecting against misuse of the data.

Since 1989 the Human Genome Management Information System (HGMIS) has been producing and distributing text on the HGP. This text includes the technical newsletter Human Genome News, progress reports, fact sheets, invited articles in peer-reviewed publications, and the DOE Primer on Molecular Genetics. Using knowledge-management experience gained in this work and in presentations, exhibitions, and judicial meetings, HGMIS initiated and is continually developing and expanding a suite of Web sites for a variety of audiences. Because genomics and the life sciences are becoming so pervasive in all sectors of society, HGMIS seeks to make information accessible to nontechnical audiences as well as to scientists, social scientists, and medical and legal practitioners who need an understanding of genetics to enhance their work and allow them to communicate across disciplines. Human Genome News, for example, contains a unique compilation of resources not found in any discipline-specific publication.

The Human Genome Project Information (HGPI) suite of Web sites, initiated in 1994, now supports some 170,000 unique user sessions and about 500,000 text-file transfers each month. The sites contain more than 2600 files, over 2200 of which are text files. About 3000 other sites link to HGPI and its individual pages. Although HGPI Web pages are presented from the HGP perspective, they extend well beyond the project's primary goals into the technological and societal ramifications of genomic research. HGPI Web pages are primary resources for nearly all major news outlets carrying stories on genomics including CNN, MSNBC, and Yahoo.

HGPI Web pages are updated daily, new pages are added several times a year, and the entire site receives a major overhaul at least annually. HGMIS incorporates constant feedback from HGPI users into the strategy for the sites' ongoing development. Main priorities are to meet user needs for accurate, understandable, and easy-to-locate information relevant to the HGP, its downstream science, and its societal implications.

A sampling of Web pages in the HGPI suite (www.ornl.gov/hgmis):

• Applications of Genome Science to biological research and for societal benefit
• HGP Goals and Progress, including ticker box on home page
• Educator and Student pages
• Images, Posters, and Electronic Presentations
• Medicine and the New Genetics and Genetic Disease Pronto! pages
• Ethical, Legal, and Social Issues including ELSI retrospective and products
• Research in Progress
• Meeting Calendars and Reports
• Chromosome Launchpad
• Publications including the November-December 1999 "Genes and Justice" issue of Judicature
• CERN Virtual Library Genetics
• Frequently Asked Questions and Fact Sheets on such topics as Gene Testing, SNPs, Functional Genomics, Cloning, and DOE Involvement in Genomics Research

Enhancements anticipated over the next few months include:

• Improved navigation incorporating a comprehensive, textbook-style index;
• Page for potential investors in genomics and biomedical sectors of the life sciences industry;
• "Gee Whiz" factoids on genetics;
• Fact sheet on genetically modified foods;
• Updated or new Web page suites for Medicine and the New Genetics, Legal Issues, Media, Education, Research, and Virtual Library Genetics

Because the HGPI sites are increasing in size and usage, HGMIS is implementing a database-facilitated method to update and maintain links to external pages more efficiently and to place Web-transmitted Human Genome News print subscription requests directly in the mailing list database.

HGMIS has distributed more than 210,000 HGP documents, and there are 13,000 print subscribers to Human Genome News. Each month HGMIS staff processes about 100 new print subscriptions and 150 information requests received via e-mail, mail, and telephone.

Web Sites

General: www.ornl.gov/hgmis

Medicine and the New Genetics: www.ornl.gov/hgmis/medicine/medicine.shtml

Research: www.ornl.gov/hgmis/research/research.shtml

Constructive comments 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.