Skorve Espen, Vassilakopoulou Polyxeni, Aanestad Margunn, Grünfeld Thomas
Aalborg University, Denmark.
University of Agder, Norway.
Stud Health Technol Inform. 2017;235:298-302.
This paper draws from the literature on collective action and the governance of the commons to address the governance of genetic data on variants of specific genes. Specifically, the data arrangements under study relate to the BRCA genes (BRCA1 and BRCA2) which are linked to breast and ovarian cancer. These data are stored in global genetic data repositories and accessed by researchers and clinicians, from both public and private institutions. The current BRCA data arrangements are fragmented and politicized as there are multiple tensions around data ownership and sharing. Three key principles are proposed for forming and evaluating data governance arrangements in the field. These principles are: equity, efficiency and sustainability.
本文借鉴了关于集体行动和公地治理的文献，以探讨特定基因变异的遗传数据治理问题。具体而言，所研究的数据安排涉及与乳腺癌和卵巢癌相关的BRCA基因（BRCA1和BRCA2）。这些数据存储在全球遗传数据存储库中，供公立和私立机构的研究人员和临床医生使用。当前的BRCA数据安排分散且政治化，因为在数据所有权和共享方面存在多重矛盾。本文提出了该领域数据治理安排的形成和评估的三项关键原则。这些原则是：公平、效率和可持续性。
