A SOLIDARITY-BASED APPROACH TO THE GOVERNANCE OF RESEARCH BIOBANKS
A SOLIDARITY-BASED APPROACH TO THE GOVERNANCE OF RESEARCH BIOBANKS
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DOI：
10.1093/medlaw/fws040
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发表时间：
2013-12-01
影响因子：
1.7
通讯作者：
Buyx, Alena
中科院分区：
文献类型：
--
作者：
Prainsack, Barbara;Buyx, Alena
大规模数据链接和数据挖掘的新机遇使生物库成为21世纪医学研究的核心资源之一。与此同时，研究生物库被认为在数据保护和将参与者的其他风险降至最低等方面构成了特殊的伦理和法律挑战。这些措施反过来导致了沉重的行政、后勤和财政成本，并因不适当地阻碍疾病研究而招致批评。在新制定的团结方法的基础上，我们提出了一种治理方法，承认人们愿意参与公共研究生物库，并更加强调减轻伤害。我们认为，这样的模型避免了以前方法的一些陷阱。它还允许超越过度限制和负担，完全基于自治的治理，这反映了人民愿意接受成本来帮助他人的治理。
New opportunities for large-scale data linkage and data-mining have rendered biobanks one of the core resources of medical research in the twenty-first century. At the same time, research biobanking has been seen to pose particular ethical and legal challenges pertaining to, for example, data protection, and the minimisation of other risks for participants. These measures have in turn led to heavy administrative, logistical, and financial costs and attracted criticism for unduly impeding disease research. Based on a newly formulated approach to solidarity, we propose an approach to governance that recognises peoples willingness to participate in a public research biobank, and poses stronger emphasis on harm mitigation. We argue that such a model avoids some of the pitfalls of previous approaches. It also allows moving beyond overly restrictive and burdensome, exclusively autonomy-based governance towards governance that is reflective of peoples willingness to accept costs to assist others.