Offering aggregate results to participants in genomic research: opportunities and challenges.
Offering aggregate results to participants in genomic research: opportunities and challenges.
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DOI：
10.1038/gim.2011.62
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发表时间：
2012-04
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尽管向基因组研究参与者提供个体结果所涉及的问题受到了相当大的关注，但总体结果的交流一直是相对较少的伦理分析的主题。向参与者提供汇总结果通常被认为是一件好事，研究发现，当被问及他们对汇总结果的兴趣时，绝大多数生物库研究参与者表示，获得此类信息很重要。即便如此，返回总体结果仍然是一种相对罕见的做法。在本文中，我们探讨了与基因组研究参与者交流汇总结果的机会，包括肯定研究参与的价值，告知参与者关于基于广泛同意进行的研究，未来未指定的研究，教育参与者和公众关于研究过程，以及建立对研究企业的信任。我们还探讨了一些挑战，包括个人和综合结果之间的复杂交叉，以及实际障碍。最后，我们提供我们的初步建议，提供综合结果和议程急需的未来研究。
Although issues involved in offering individual results to participants in genomic research have received considerable attention, communication of aggregate results has been the subject of relatively little ethical analysis. Offering participants aggregate results is typically assumed to be a good thing, and studies have found that a significant majority of biobank research participants, when asked about their interest in aggregate results, say that access to such information would be important. Even so, return of aggregate results remains a relatively uncommon practice. In this paper, we explore the opportunities involved in communicating aggregate results to participants in genomic research, including affirming the value of research participation, informing participants about research being conducted based on broad consent for future unspecified research, educating participants and the public about the research process, and building trust in the research enterprise. We also explore some of the challenges, including the complex intersection between individual and aggregate results, as well as practical hurdles. We conclude by offering our preliminary recommendations concerning the provision of aggregate results and an agenda for much-needed future research.