Community Engagement and Informed Consent in the International HapMap ProjectRotimi C.a · Leppert M.b · Matsuda I.e · Zeng C.h · Zhang H.i · Adebamowo C.j · Ajayi I.j · Aniagwu T.j · Dixon M.b · Fukushima Y.f · Macer D.k · Marshall P.d · Nkwodimmah C.j · Peiffer A.b · Royal C.a · Suda E.g · Zhao H.h · Wang V.O.c · McEwen J.c
aNational Human Genome Center, Howard University, Washington, D.C., bDepartment of Human Genetics, University of Utah, Salt Lake City, Utah, cNational Human Genome Research Institute, US National Institutes of Health, Bethesda, Md., and dDepartment of Bioethics, Case Western Reserve University School of Medicine, Cleveland, Ohio, USA; eHealth Sciences University of Hokkaido, Hokkaido, fDepartment of Medical Genetics, Shinshu University School of Medicine, Matsumoto, and gUniversity of Tsukuba, Eubios Ethics Institute, Tsukuba Science City, Japan; hBeijing Genomics Institute, Chinese Academy of Sciences, and iBeijing Normal University, Beijing, China; jUniversity of Ibadan College of Medicine, Ibadan, Oyo State, Nigeria; kUnited Nations Educational, Scientific and Cultural Organization (UNESCO), Prakanong, Bangkok, Thailand
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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.
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