Betty K. Mansfield, Anne E. Adamson, Denise K. Casey, Sheryl A. Martin, John S. Wassom, Judy M. Wyrick, Laura N. Yust, Murray Browne, and Marissa D. Mills
Biomedical and Environmental Information Analysis Section; Health Sciences Research Division; Oak Ridge
National Laboratory; 1060 Commerce Park, MS 6480; Oak Ridge, TN 37830
423/576-6669, Fax: /574-9888, bkq@ornl.gov
The Human Genome Management Information System (HGMIS), which was inaugurated in 1989, provides technical communication and information services for the DOE Office of Health and Environmental Research (OHER) Human Genome Program Task Group. HGMIS facilitates research by (1) helping to communicate genome-related matters and investigations to contractors, grantees, and other publications via hard copy and World Wide Web; (2) serving as a clearinghouse for information on the U.S. genome project; and (3) reducing duplication of research efforts by providing a forum for information exchange among Human Genome Project investigators worldwide. HGMIS also occasionally compiles and organizes administrative data for DOE by preparing reports and meeting minutes, conducting information searches, writing and editing, and assisting DOE staff at meetings.
Communication Through Publications. To fulfill its communication goals, HGMIS publishes the bimonthly newsletter Human Genome News (HGN), cosponsored by OHER and the NIH National Center for Human Genome Research. HGMIS also produces a primer on molecular genetics and reports on the DOE Human Genome Program, Santa Fe contractor-grantee workshops, and other related subjects; and makes many of its publications available via WWW (http://www.ornl.gov/hgmis/home.shtml) and Gopher (gopher.gdb.org). The newsletter and several reports have been recognized with awards by the Society for Technical Communication.
HGN features technical and general interest articles; meeting reports; national and international project news; articles on ethical, legal, and social implications (ELSI) of the genome project; features on progress, goals, informatics, mapping, sequencing, technology development and transfer, and resources for facilitating research; genome meeting and training calendars; and grant and fellowship announcements. Some 11,500 domestic and foreign subscribers include genome and basic researchers at universities, national laboratories, and other research institutions; professors and teachers; industry representatives; legal personnel; ethicists; students; genetic counselors; physicians; science writers; and other interested individuals. To conserve resources and increase cost-effectiveness, HGMIS uses bulk mailing and constantly updates and revises the mailing list, dropping the names of those who fail to respond to subscription-renewal notices. Around 200 new subscribers have been added each month during the past 2 years.
HGN also serves as a primary source for discipline-specific publications that extract or reprint information on the Human Genome Project, including the Eubios ELSI journal; newsletters and journals of universities, genome centers, state biotechnology organizations, chromosome-specific and disease-gene support groups, high school biology teachers, Student Pugwash USA, the Japanese rice genome project, and the National Society of Genetic Counselors. HGMIS staff members continuously monitor changes in direction of the international Human Genome Project and search for ways to strengthen the content relevancy of the newsletter and other HGMIS services.
Distribution of Documents. HGMIS staff has distributed about 53,000 items requested by subscribers and meeting attendees, including program and workshop reports, the DOE-NIH 5-year plan, primer, and the DOE informatics summit report. In addition, numerous copies of full or partial documents have been distributed for educational purposes.
An outstanding example is the Primer on Molecular Genetics, expanded and revised by HGMIS from an earlier DOE document. Originally an appendix to the program reports, the separate primer has been reprinted several times. It is in great demand as a handout for genome centers; resource for new staff training by companies that produce products used by genome scientists; and educational tool for teachers, genetic counselors, and such organizations as high schools, universities, and medical schools that use the primer for their first-year medical students and continuing-education curriculum. More than 33,000 hard copies have been distributed, and the primer is also available via WWW at the HGMIS site. As of September 1995, the electronic primer was receiving about 16,000 information requests a month.
Communication Through the World Wide Web. In November 1994 HGMIS staff began producing a comprehensive, text-based WWW server on topics relating to the genome project; this server has become an important site for updating scientists and providing educational material for nonscientists. To support DOE's commitment to public education, HGMIS provides space on its WWW site for drafts of the high school genetics curriculum being developed by the DOE-funded Biological Sciences Curriculum Study group (Colorado College). The Genetic Privacy Act, written at Harvard Law School, is also accessible at the HGMIS site.
HGMIS maintains and updates the Genetics section of the Virtual Library from CERN (Switzerland) and the DOE genome projectþspecific pages. HGMIS also collaborates with the Einstein Institute for Science, Health, and the Courts to help educate the judiciary on genetics and other biomedical issues via the WWW site. Between January and July 1995, usage of HGMIS WWW text files increased more than 20-fold, from 444 to 9326 information requests a month.
Information Requests. HGMIS staff members answer questions and supply general information about the Human Genome Project by telephone, fax, and e-mail; the most frequent inquirers are graduate students, researchers, medical professionals, private companies, and individuals. For example, those in biotechnology and other industries use HGMIS as a resource for identifying goods and services that might be useful to genome researchers. HGMIS also links callers with appropriate people in the Human Genome Project who have experience in the caller's subject area. HGMIS staff exchange ideas and suggestions with investigators, industry representatives, and others when they display the DOE Human Genome Project traveling exhibit at scientific conferences and genome-related meetings.
HGMIS invites comments and suggestions about its documents and services, which are available upon request and without charge.
This work is sponsored by the Office of Health and Environmental Research, U.S. Department of Energy, and by the National Institutes of Health National Center for Human Genome Research under contracts No. DE-AC05-84OR21400 and 2Y01-HG-00004-06, respectively, with Lockheed Martin Energy Systems, Inc.