title: Community engagement about genetic variation research.
abstract: The aim of this article is to describe the methods and effectiveness of the Public Engagement in Genetic Variation and Haplotype Mapping Issues (PEGV) Project, which engaged a community in policy discussion about genetic variation research. The project implemented a 6-stage community engagement model in New Rochelle, New York. First, researchers recruited community partners. Second, the project team created community oversight. Third, focus groups discussed concerns generated by genetic variation research. Fourth, community dialogue sessions addressed focus group findings and developed policy recommendations. Fifth, a conference was held to present these policy recommendations and to provide a forum for HapMap (haplotype mapping) researchers to dialogue directly with residents. Finally, findings were disseminated via presentations and papers to the participants and to the wider community beyond. The project generated a list of proposed guidelines for genetic variation research that addressed the concerns of New Rochelle residents. Project team members expressed satisfaction with the engagement model overall but expressed concerns about how well community groups were utilized and what segment of the community actually engaged in the project. The PEGV Project represents a model for researchers to engage the general public in policy development about genetic research. There are benefits of such a process beyond the desired genetic research.
authors.affiliation: Genetic Alliance, 4301 Connecticut Avenue, NW Suite 404, Washington, DC 20008, USA. sterry@geneticalliance.org
authors.forename: Sharon F
authors.initials: SF
authors.lastname: Terry
authors.forename: Kurt D
authors.initials: KD
authors.lastname: Christensen
authors.forename: Susan
authors.initials: S
authors.lastname: Metosky
authors.forename: Gayle
authors.initials: G
authors.lastname: Rudofsky
authors.forename: Kathleen P
authors.initials: KP
authors.lastname: Deignan
authors.forename: Hulda
authors.initials: H
authors.lastname: Martinez
authors.forename: Penelope
authors.initials: P
authors.lastname: Johnson-Moore
authors.forename: Toby
authors.initials: T
authors.lastname: Citrin
mesh_terms: D000293:Adolescent; D000328:Adult; D026683:Advisory Committees; D000368:Aged; D000369:Aged, 80 and over; D003159:Community-Institutional Relations; D003226:Congresses as Topic; D005260:Female; D017144:Focus Groups; D014644:Genetic Variation; D005828:Genetics, Population; D060148:HapMap Project; D006801:Humans; D008297:Male; D008875:Middle Aged; D009518:New York; D011050:Policy Making