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Community engagement about genetic variation research
Sharon F Terry1, Kurt D Christensen, Susan Metosky
1Genetic Alliance, 4301 Connecticut Avenue, NW Suite 404, Washington, DC 20008, USA. sterry@geneticalliance.org
Population Health Management
|August 6, 2011
Summary
The Public Engagement in Genetic Variation and Haplotype Mapping Issues (PEGV) Project successfully engaged a community in policy discussions about genetic research, developing guidelines for future studies.
Area of Science:
- Genetics
- Bioethics
- Community Engagement
Background:
- Genetic variation research raises public policy concerns.
- Engaging communities in scientific policy development is crucial.
Purpose of the Study:
- To describe the methods and effectiveness of the Public Engagement in Genetic Variation and Haplotype Mapping Issues (PEGV) Project.
- To evaluate a community engagement model for policy discussion on genetic variation research.
Main Methods:
- Implemented a 6-stage community engagement model in New Rochelle, NY.
- Included community partner recruitment, oversight, focus groups, dialogue sessions, and a conference.
- Disseminated findings to participants and the wider community.
Main Results:
- Generated proposed guidelines for genetic variation research based on community concerns.
- Project team reported satisfaction with the model but noted concerns about community group utilization and participant demographics.
- The PEGV Project demonstrated a viable model for public engagement in genetic research policy.
Conclusions:
- Community engagement in genetic research policy development is feasible and beneficial.
- The PEGV Project provides a transferable model for public involvement in scientific policy.
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