title: Community engagement and informed consent in the International HapMap project.
abstract: The International HapMap Consortium has developed the HapMap, a resource that describes the common patterns of human genetic variation (haplotypes). Processes of community/public consultation and individual informed consent were implemented in each locality where samples were collected to understand and attempt to address both individual and group concerns. Perceptions about the research varied, but we detected no critical opposition to the research. Incorporating community input and responding to concerns raised was challenging. However, the experience suggests that approaching genetic variation research in a spirit of openness can help investigators better appreciate the views of the communities whose samples they seek to study and help communities become more engaged in the science.
authors.affiliation: National Human Genome Center, Howard University, Washington, DC, USA.
authors.forename: Charles
authors.initials: C
authors.lastname: Rotimi
authors.forename: Mark
authors.initials: M
authors.lastname: Leppert
authors.forename: Ichiro
authors.initials: I
authors.lastname: Matsuda
authors.forename: Changqing
authors.initials: C
authors.lastname: Zeng
authors.forename: Houcan
authors.initials: H
authors.lastname: Zhang
authors.forename: Clement
authors.initials: C
authors.lastname: Adebamowo
authors.forename: Ike
authors.initials: I
authors.lastname: Ajayi
authors.forename: Toyin
authors.initials: T
authors.lastname: Aniagwu
authors.forename: Missy
authors.initials: M
authors.lastname: Dixon
authors.forename: Yoshimitsu
authors.initials: Y
authors.lastname: Fukushima
authors.forename: Darryl
authors.initials: D
authors.lastname: Macer
authors.forename: Patricia
authors.initials: P
authors.lastname: Marshall
authors.forename: Chibuzor
authors.initials: C
authors.lastname: Nkwodimmah
authors.forename: Andy
authors.initials: A
authors.lastname: Peiffer
authors.forename: Charmaine
authors.initials: C
authors.lastname: Royal
authors.forename: Eiko
authors.initials: E
authors.lastname: Suda
authors.forename: Hui
authors.initials: H
authors.lastname: Zhao
authors.forename: Vivian Ota
authors.initials: VO
authors.lastname: Wang
authors.forename: Jean
authors.initials: J
authors.lastname: McEwen
mesh_terms: D000328:Adult; D002648:Child; D002874:Chromosome Mapping; D005260:Female; D014644:Genetic Variation; D005828:Genetics, Population; D016045:Human Genome Project; D006801:Humans; D007258:Informed Consent; D007391:International Cooperation; D008297:Male; D010290:Parents