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国际人类基因组单体型图计划中的社区参与和知情同意

Community engagement and informed consent in the International HapMap project.

作者信息

Rotimi Charles, Leppert Mark, Matsuda Ichiro, Zeng Changqing, Zhang Houcan, Adebamowo Clement, Ajayi Ike, Aniagwu Toyin, Dixon Missy, Fukushima Yoshimitsu, Macer Darryl, Marshall Patricia, Nkwodimmah Chibuzor, Peiffer Andy, Royal Charmaine, Suda Eiko, Zhao Hui, Wang Vivian Ota, McEwen Jean

机构信息

National Human Genome Center, Howard University, Washington, DC, USA.

出版信息

Community Genet. 2007;10(3):186-98. doi: 10.1159/000101761.

DOI:10.1159/000101761
PMID:17575464
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.

摘要

国际人类基因组单体型图协会绘制了人类基因组单体型图,这是一种描述人类遗传变异(单倍型)常见模式的资源。在采集样本的每个地区都实施了社区/公众咨询和个人知情同意程序,以了解并试图解决个人和群体的关切。对该研究的看法各不相同,但我们未发现对该研究的强烈反对意见。纳入社区意见并回应所提出的关切具有挑战性。然而,经验表明,以开放的态度开展遗传变异研究有助于研究人员更好地理解他们试图研究其样本的社区的观点,并有助于社区更多地参与到科学研究中来。

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