Foster M W, Bernsten D, Carter T H
Department of Anthropology, University of Oklahoma, Norman, OK 73019, USA.
Am J Hum Genet. 1998 Sep;63(3):696-702. doi: 10.1086/302013.
Genetic research increasingly focuses on population-specific human genetic diversity. However, the naming of a human population in public databases and scientific publications entails collective risks for its members. Those collective risks can be evaluated and protections can be put in place by the establishment of a dialogue with the subject population, before a research study is initiated. Here we describe an agreement to undertake genetic research with a Native American tribe. We identified the culturally appropriate public and private social units within which community members are accustomed to make decisions about health. We then engaged those units in a process of communal discourse. In their discourses about our proposed study, community members expressed most concern about culturally specific implications. We also found that, in this population, private social units were more influential in communal decision making than were public authorities. An agreement was reached that defined the scope of research, provided options for naming the population in publications (including anonymity), and addressed the distribution of royalties from intellectual property, the future use of archival samples, and specific cultural concerns. We found that informed consent by individuals could not fully address these collective issues. This approach may serve as a general model for the undertaking of population-specific genetic studies.
基因研究越来越关注特定人群的人类基因多样性。然而，在公共数据库和科学出版物中对人类群体进行命名，会给其成员带来集体风险。在开展研究之前，通过与相关人群建立对话，可以评估这些集体风险并制定保护措施。在此，我们描述了一项与一个美洲原住民部落进行基因研究的协议。我们确定了社区成员习惯就健康问题做出决策的、在文化上合适的公共和私人社会单位。然后，我们让这些单位参与到一个公共讨论过程中。在关于我们提议研究的讨论中，社区成员表达了对文化特定影响的最大担忧。我们还发现，在这个群体中，私人社会单位在公共决策中比公共当局更具影响力。最终达成了一项协议，该协议界定了研究范围，提供了在出版物中对该群体进行命名的选项（包括匿名），并涉及了知识产权版税的分配、存档样本的未来使用以及特定的文化问题。我们发现，个体的知情同意无法完全解决这些集体问题。这种方法可作为开展特定人群基因研究的通用模式。
