Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Human Genome News, November 1993: 5(4)
A multidisciplinary group of educators, computer specialists, clinical geneticists, counselors, librarians, and consumers representing 15 constituent organizations met September 26-27 at Johns Hopkins University (JHU) for the Workshop on Educational Resources in Genetics: Organizations and Databases. The meeting was organized by the education committee of the Council of Regional Networks of Genetic Services (CORN) and Genome Data Base and sponsored in part by the Maternal and Child Health Bureau. Chaired by Virginia Proud (University of Alabama and CORN Consumer Database Subcommittee), the workshop was designed to develop a system for easy access to basic medical genetics information and to coordinate existing and potential databases.
Representatives from constituent groups (including Alliance for Genetic Support Groups, March of Dimes Birth Defects Foundation, and National Organization of Rare Disorders) expressed the need for easily accessible, accurate information for the thousands of callers who contact their organizations each month. As the impact of the Human Genome Project begins to be realized, questions and requests for information will increase, they said. Valuable information and educational resources developed through the Human Genome Project, including educational programs and curricula, videos, and print publications, also need to be made available to the genetics and education communities and to consumers.
Attendees presented material already developed-- such as data sets, bibliographies, and online access-- that, when compiled and integrated, could avoid duplication of effort and prove useful to other groups and individuals. Under the direction of Dan Jacobson and David Kingsbury (both of JHU), participants also accessed Online Mendelian Inheritance in Man (OMIM) and other genetic databases worldwide through the JHU Computational Biology Gopher. They concluded that some good resources on medical genetics and clinical medical conditions are now available; files already in computer-readable format or in defined databases could quickly be made accessible to the entire genetics community through Gopher.
Attendees were enthusiastic about developing these resources into a consumer-oriented database called INFOGEN. Although it had been proposed as a bibliography of educational resources, those present felt that a full-text database, possibly with graphics, would be more useful; information could also be distributed in hard copy, CD-ROM, or floppy disk. Teachers of genetics expressed interest in serving as reviewers and resource developers for the database, and an advisory board and related working committees are being set up.
To continue the developing collaboration, the Consortium of Teachers in Genetics (CONTIG) was proposed at this meeting. CONTIG would bring together collaborators to develop educational systems for helping to bridge the gap between (1) scientific data generated through basic genetics research and the Human Genome Project and (2) useful applications of this data for the public and clinicians.''Teachers'' in CONTIG include but are not limited to various educators who are also geneticists, counselors, librarians, medical informatics specialists, consumers, and representatives from the Human Genome Project.
[Virginia Proud, University of Alabama]
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v5n4).
The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.