ORNL Review Vol. 34, No. 1, 2001

Accessing Information on the Human Genome Project

If you want news on the new biology, whom should you call? Try the dedicated ORNL group that maintains the Human Genome Management Information System (HGMIS) for the Department of Energy. This group issues a number of publications (including Human Genome News, published about twice a year) and maintains a popular Web site (www.ornl.gov/hgmis/). The HGMIS folks have become an important source of information on the human, animal, plant, and microbial genomes for the news media, the trade press, biology researchers, and teachers and students.

Judy Wyrick and Sheryl Martin examine the on-screen image of the cover of a document

Judy Wyrick (right) and Sheryl Martin examine the on-screen image of the cover of a document entitled Genomes to Life, which the HGMIS group prepared for DOE. The draft document, available on the HGMIS Web site, describes the goals of the proposed program, including identifying multiprotein complexes that carry out the functions of living systems. See www.DOEGenomesToLife.org. (Photo by Curtis Boles, enhanced by Gail Sweeden.)

The HGMIS is DOE's educational outreach arm of the Human Genome Project, which is supported by both DOE and the National Institutes of Health. The HGMIS Group, led by Betty Mansfield of ORNL's Life Sciences Division since 1989, is responsible for providing information about the project, its progress, its applications, and its impacts on society. In 1997, on behalf of the group, Mansfield received an Exceptional Service Award for Exploring Genomes, presented at the 50th Anniversary Symposium of DOE's Biological and Environmental Research (BER) Program; she was recognized "as founding and managing editor of Human Genome News and for outstanding success in communicating scientific information to the U.S. and international communities about the Department's BER Program."

In 2000 the HGMIS Group received inquiries from ABC's Who Wants to be a Millionaire?" and NBC's Jeopardy concerning the accuracy of answers to questions on human genetics and the human genome. The ORNL group has provided information and graphics to a number of U.S. and foreign news outlets, including CNN, NBC, ABC's Good Morning America, and ABC London.

The group also has provided answers to questions from reporters from the print media, including the Boston Globe, Chicago Tribune, Los Angeles Times, Wall Street Journal (interactive online edition), Science Magazine, and Wired Magazine. Marissa Mills, a trained journalist, marketing expert, and Web content developer in the HGMIS Group, has developed press kits and answered numerous electronic mail questions from the media related to human genome news events.

Mills provided assistance to two representatives of the Native American community seeking information about tracing Native American ancestry through DNA. She also has created and presented programs on careers in genetics for women, African Americans, and residents of rural Appalachian communities.

Denise Casey, a trained biologist and versatile writer in the HGMIS Group, was guest editor of and wrote an article for the special genes and justice issue of Judicature, a magazine for judges, published in November-December 1999. Recently, she and group member Judy Wyrick created a human chromosome landmarks poster, jointly sponsored by DOE and Qiagen, a company supplying reagents for genome research.

Other members of the HGMIS Group are Anne Adamson, Laura Yust, and Web architect Sheryl Martin. A creative lot, they provide valuable editing, publication layout, and Web design expertise for the group. In addition to being the group's primary editor, text manager, and facilitator, Adamson recently co-authored texts on the DOE Ethical, Legal, and Social Issues program and contributed to an invited article with program manager Dan Drell on how genomics may affect the outcome of medicine 20 years from now. Yust, a graduate student, does Web work, coordinates mailing and outreach, and maintains the ex-tensive database of 15,000 newsletter subscribers.

The group is particularly proud of their Web site. The HGMIS Web site statistics show an average of 2.6 million user sessions per year; the average length of a user session is 12.5 minutes. The site has 9 million text file hits per year, and many more hits when graphic files are counted. The site has specialized pages, including pages on the benefits of genome research; explorations into the ethical, legal, and social issues surrounding the availability of personal genetic data; and primers that are widely used by researchers from other disciplines who wish to contribute to genomics research, teachers and students, genetic counselors, and biotechnology company personnel.

The Web site also brings in 2100 questions a year by electronic mail, including letters from parents of children with genetic diseases.

The work has its surprises. "When I gave a presentation on the Human Genome Project to a group of doctors," Mansfield says, "I was first asked not about the medical implications but rather for advice on investing in biotech stocks."

A biologist by training, Mansfield's prior research included studies on changes in the proteins produced by abnormal red blood cells in leukemic mice after chemicals were added to make these cells normal. "I was doing proteomics research back when it wasn't cool," Mansfield says. Now, she heads a leading source of information on a field that is really hot.

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