Case Report

Community Engagement and Informed Consent in the International HapMap Project
Charles Rotimi^a, Mark Leppert^b, Ichiro Matsuda^e, Changqing Zeng^h, Houcan Zhangⁱ, Clement Adebamowo^j, Ike Ajayi^j, Toyin Aniagwu^j, Missy Dixon^b, Yoshimitsu Fukushima^f, Darryl Macer^k, Patricia Marshall^d, Chibuzor Nkwodimmah^j, Andy Peiffer^b, Charmaine Royal^a, Eiko Suda^g, Hui Zhao^h, Vivian Ota Wang^c, Jean McEwen^c, The International HapMap Consortium

^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

Address of Corresponding Author

Community Genet 2007;10:186-198 (DOI: 10.1159/000101761)

  Key Words

• Community engagement
• Community consultation
• Public consultation
• Informed consent
• International HapMap Project
• Genetic variation research

  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.

Copyright © 2007 S. Karger AG, Basel

  Author Contacts

Dr. Jean McEwen
US National Institutes of Health, National Human Genome Research Institute
5635 Fishers Lane, Suite 4076
Bethesda, MD 20892 (USA)
Tel. +1 301 402 4997, Fax +1 301 402 1950, E-Mail mcewenj@mail.nih.gov

  Article Information

Number of Print Pages : 13
Number of Figures : 0, Number of Tables : 3, Number of References : 20