Investigators' Abstract): This proposal seeks support for a one and one-half day conference titled """"""""The Human Genome Project: A Public Forum."""""""" The conference will be planned and delivered through the collaboration of the Mid-Atlantic Regional Human Genetics Network (MARHGN) and the Alliance of Genetic Support Groups. The three primary objectives of the conference are: 1) to increase understanding of the process and expected outcome of the Human Genome Project among genetics professionals and consumers; 2) to provide a forum in which the potential ethical, legal and social implications of the HGP can be identified and discussed; and 3) to serve as a demonstration model for future educational efforts and public discussion about the HGP. Educational objectives will be accomplished through two methods. Prior to the conference, printed materials will be developed and distributed to all MARHGN and Alliance members. These materials will describe the goals of the HGP, its scientific methodology, the potential to obtain knowledge of basic biological processes, and some of the expected practical applications for disease detection, pre-symptomatic identification of medical risks and genetic counseling. Introductory didactic sessions at the conference will make use of available audiovisual materials and lectures. Discussion of the potential ethical, legal and social ramifications of the HGP will be addressed in three formats. First, individuals representing diverse backgrounds will be asked to respond to questions that will elicit their opinions pertaining to the possible effects of the HGP. Represented groups will include: consumers (individuals who have a genetic condition or risk), genetics and other health professionals, lawyers, industrial representatives, and ethicists. The second discussion format will consist of small workshops in which specific concerns will be identified. Finally, workshop leaders will present each group's conclusions to the entire conference. A summary of conference conclusions and recommendations will be formulated from this discussion. Conference attendees will evaluate pre-conference materials, conference format and content to assess and describe the usefulness of this project. Reports describing the project, conference conclusions and recommendations will be distributed to other genetics regional networks and will be submitted for publication in journals reaching diverse audiences.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Conference (R13)
Project #
1R13HG000401-01A1
Application #
3435482
Study Section
Genome Study Section (GNM)
Project Start
1991-09-20
Project End
1992-09-19
Budget Start
1991-09-20
Budget End
1992-09-19
Support Year
1
Fiscal Year
1991
Total Cost
Indirect Cost
Name
Albert Einstein Medical Center (Philadelphia)
Department
Type
DUNS #
City
Philadelphia
State
PA
Country
United States
Zip Code
19141