Foster M W, Eisenbraun A J, Carter T H
Department of Anthropology, University of Oklahoma, Norman 73019, USA.
Genet Test. 1997;1(4):269-74. doi: 10.1089/gte.1997.1.269.
Targeting socially identifiable subpopulations for genetic screening entails the risk of stigmatizing them. The potential for such harm should be considered before programs are initiated. There is an emerging consensus that targeted subpopulations should be actively involved in evaluating these risks. A process of communal discourse engages the community in discussions that reflect both public and private sociocultural contexts in which individual decisions about screening will be made. This allows the subpopulation to address the collective implications of testing in a culturally appropriate way. Communal discourse was used to evaluate the collective implications of genetic testing in two Native American communities. We found that private social units were more influential than public units in reaching communal consensus, that local sociocultural issues were of more concern than were general issues such as employment and insurance discrimination, and that heterogeneity within a subpopulation may be just as significant a consideration in designing a targeted screening program as diversity between subpopulations. Heterogeneity is constructed by using a dichotomy between community-specific and biomedical health representations and practices. How genetic screening is socially constructed using a community's existing dichotomy may be central to its success.
针对具有社会可识别性的亚人群进行基因筛查存在使他们遭受污名化的风险。在启动相关项目之前，应考虑这种潜在危害。目前正在形成一种共识，即目标亚人群应积极参与评估这些风险。社区讨论过程让社区参与到反映公共和私人社会文化背景的讨论中，而在这些背景下将做出关于筛查的个人决定。这使亚人群能够以符合文化习惯的方式应对检测的集体影响。社区讨论被用于评估两个美国原住民社区基因检测的集体影响。我们发现，在达成社区共识方面，私人社会单位比公共单位更具影响力；与就业和保险歧视等一般问题相比，当地社会文化问题更受关注；而且在设计目标筛查项目时，亚人群内部的异质性可能与亚人群之间的多样性同样重要。异质性是通过在特定社区健康表征和实践与生物医学健康表征和实践之间进行二分法构建的。利用社区现有的二分法对基因筛查进行社会构建可能是其成功的关键。
