Foster M W, Sharp R R, Freeman W L, Chino M, Bernsten D, Carter T H
Department of Anthropology, University of Oklahoma, Norman, Oklahoma, USA.
Am J Hum Genet. 1999 Jun;64(6):1719-27. doi: 10.1086/302415.
The practicality and moral value of community review of human genetic research has become a focus of debate. Examples from two Native American communities are used to address four aspects of that debate: (1) the value of community review in larger, geographically dispersed populations; (2) the identification of culturally specific risks; (3) the potential conflict between individual and group assessments of research-related risks; and (4) the confusion of social categories with biological categories. Our experiences working with these two communities suggest that: (1) successful community review may require the involvement of private social units (e.g., families); (2) culturally specific implications of genetic research may be identifiable only by community members and are of valid concern in their moral universes; (3) community concerns can be incorporated into existing review mechanisms without necessarily giving communities the power to veto research proposals; and (4) the conflation of social and biological categories presents recruitment problems for genetic studies. These conclusions argue for the use of community review to identify and minimize research-related risks posed by genetic studies. Community review also can assist in facilitating participant recruitment and retention, as well as in developing partnerships between researchers and communities.
人类基因研究社区审查的实用性和道德价值已成为辩论的焦点。本文利用两个美国原住民社区的例子来探讨这场辩论的四个方面：（1）社区审查在更大、地理上分散的人群中的价值；（2）识别特定文化风险；（3）个人与群体对研究相关风险评估之间的潜在冲突；（4）社会类别与生物类别之间的混淆。我们与这两个社区合作的经验表明：（1）成功的社区审查可能需要私人社会单位（如家庭）的参与；（2）基因研究的特定文化影响可能只有社区成员才能识别，并且在他们的道德范畴内是合理关切的；（3）社区关切可以纳入现有的审查机制，而不必赋予社区否决研究提案的权力；（4）社会和生物类别的混淆给基因研究带来了招募问题。这些结论支持利用社区审查来识别并尽量减少基因研究带来的与研究相关的风险。社区审查还可以协助促进参与者的招募和保留，以及发展研究人员与社区之间的伙伴关系。
