联盟数据共享政策设计：可持续性挑战。
Data sharing policy design for consortia: challenges for sustainability.
机构信息
HeLEX - Centre for Health, Law and Emerging Technologies, Department of Public Health, University of Oxford, Old Road Campus, Oxford OX3 7LF, UK.
University of Exeter Law School, Amory Building, Rennes Drive, Exeter EX4 4RJ, UK.
出版信息
Genome Med. 2014 Jan 29;6(1):4. doi: 10.1186/gm523. eCollection 2014.
The field of human genomics has led advances in the sharing of data with a view to facilitating translation of research into innovations for human health. This change in scientific practice has been implemented through new policy developed by many principal investigators, project managers and funders, which has ultimately led to new forms of practice and innovative governance models for data sharing. Here, we examine the development of the governance of data sharing in genomics, and explore some of the key challenges associated with the design and implementation of these policies. We examine how the incremental nature of policy design, the perennial problem of consent, the gridlock caused by multiple and overlapping access systems, the administrative burden and the problems with incentives and acknowledgment all have an impact on the potential for data sharing to be maximized. We conclude by proposing ways in which the scientific community can address these problems, to improve the sustainability of data sharing into the future.
人类基因组学领域的进展推动了数据共享，旨在促进研究转化为人类健康创新。这种科学实践的变化是通过许多首席研究员、项目经理和资助者制定的新政策来实施的，最终导致了数据共享的新实践形式和创新治理模式。在这里，我们研究了基因组学中数据共享治理的发展，并探讨了与这些政策的设计和实施相关的一些关键挑战。我们研究了政策设计的增量性质、同意的长期问题、多个和重叠的访问系统造成的僵局、行政负担以及激励和认可问题如何对数据共享的最大化潜力产生影响。最后，我们提出了科学界可以解决这些问题的方法，以提高数据共享未来的可持续性。
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