Introduction to the Workshop
URLs Provided by Attendees
- Ethical, Legal, and Social Issues
The electronic form of this document may be cited in the following style:
Human Genome Program, U.S. Department of Energy, DOE Human Genome Program Contractor-Grantee Workshop IV, 1994.
Abstracts scanned from text submitted for November 1994 DOE Human Genome Program Contractor-Grantee Workshop. Inaccuracies have not been corrected.
Human Genome Management Information System
Betty K. Mansfield, Anne E. Adamson, Denise K. Casey, K. Alicia Davidson, Sheryl A. Martin, John S. Wassom, Judy M. Wyrick, and Laura N. Yust
Biomedical and Environmental Information Analysis Section; Health and Science Research Division; Oak Ridge National Laboratory; 1060 Commerce Park, MS 6480; Oak Ridge, TN 37830
615/576-6669, Fax: /574-9888, Internet: firstname.lastname@example.org
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 is charged with (1) helping to communicate genome-related matters and research to contractors, grantees, and other publications; (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.
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, contractor-grantee workshops, and other related subjects; and makes its publications available via World Wide Web and Gopher (gopher.gdb.org). The newsletter and several reports have been recognized with awards by the Society for Technical Communication, East Tennessee Chapter.
HGN features technical and general interest articles, meeting reports, national and international project news, features on informatics and resources for facilitating research, genome event and training calendars, and grant and fellowship announcements. Some 9000 newsletter subscribers include genome and basic researchers at national laboratories, universities, 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.
HGN also serves as a primary source for discipline-specific publications that extract or reprint information on the Human Genome Project. Some of these are Bioinformatics; the ethics journal Eubios; several university publications; and newsletters of genome centers, state biotechnology organizations (BT Catalyst), chromosome-specific support groups (The Chromosome 18 Communique), high school biology teachers (The Genetic Messenger), Student Pugwash USA (Tough Questions), and the National Society of Genetic Counselors (Perspectives in Genetic Counseling). The U.K publication Gnome News regularly reprints the GDB Forum pages from HGN for its readers.
By 1994 over half the subscribers had requested some type of information or document, including program and workshop reports, the DOE-NIH 5-year plan, 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 because of its demand as a handout for genome centers and as a resource for teachers, genetic counselors, and educational organizations. These organizations include high schools; universities; and medical schools, which use the primer in their continuing-education curriculum. More than 28,500 hard copies have been distributed without charge, and the primer is avaibble on the World Wide Web (URL: http://www.ornl.gov/hgmis/publicat/primer/index.shtml).
In addition to their publishing efforts, HGMIS staff answer questions about the Human Genome Project and supply general information by telephone, fax, and e-mail; the most frequent inquirers are graduate students, researchers, medical professionals, and private companies and individuals. For example, experts in biotechnology and otber industries use HGMIS as a source of data for identifying goods and services that might be useful to genome researchers. HGMIS staff also have the opportunity to 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, under contract No. DE-AC05-84OR21400 with Martin Marietta Energy Systems, Inc.