학술논문
Community Engagement and Informed Consent in the International HapMap Project.
Document Type
Article
Author
Rotimi, Charles; Leppert, Mark; Matsuda, Ichiro; Changqing Zeng; Houcan Zhang; Adebamowo, Clement; Ajayi, Ike; Aniagwu, Toyin; Dixon, Missy; Fukushima, Yoshimitsu; Macer, Darryl; Marshall, Patricia; Nkwodimmah, Chibuzor; Peiffer, Andy; Royal, Charmaine; Suda, Eiko; Hui Zhao; Wang, Vivian Ota; McEwen, Jean
Source
Subject
*HUMAN genetic variation
*BIOLOGICAL variation
*ASSOCIATIONS, institutions, etc.
*RESEARCH
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Language
ISSN
1422-2795
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 [ABSTRACT FROM AUTHOR]