Capps Benjamin
Department of Bioethics, Faculty of Medicine, Dalhousie University, 5849 University Avenue, Room C-312, CRC Bldg, PO Box 15000, Halifax, NS, B3H 4R2, Canada.
Monash Bioeth Rev. 2015 Dec;33(4):238-57. doi: 10.1007/s40592-015-0042-y.
Biobanks are designed with particular purposes in mind. These purposes are reflected in the governance frameworks that define the conditions for participation and access by researchers. In this paper, I analyse two different models: the commercially aligned deCODE biobank and the 'public good' framework of UK Biobank. These diametric models have both featured 'the public interest' as pivotal to their achievements. However, if properly understood, the public interest rhetoric of deCODE actually conflicts with any professed community interest. The reasons why are explained, and the effects this has on conditions for participation are critiqued, before reflecting on how each model might have an impact on reproductive health research.
生物样本库的设计都有特定目的。这些目的体现在治理框架中，该框架定义了研究人员参与和获取的条件。在本文中，我分析了两种不同模式：与商业挂钩的deCODE生物样本库和英国生物样本库的“公共利益”框架。这两种截然不同的模式都将“公共利益”视为其成就的关键。然而，如果理解得当，deCODE的公共利益说辞实际上与任何宣称的社区利益相冲突。文中解释了原因，并对其对参与条件的影响进行了批判，然后思考了每种模式可能如何对生殖健康研究产生影响。
