期刊
GENETICS IN MEDICINE
卷 14, 期 4, 页码 490-496出版社
NATURE PUBLISHING GROUP
DOI: 10.1038/gim.2011.62
关键词
aggregate results; education; informed consent; research participants; research results; trust
资金
- [R01-HG003178]
- [UL1-RR024128]
- [P50-HG3374]
- [U01-HG004610]
- [P50-HG003390]
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 article, 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.
作者
我是这篇论文的作者
点击您的名字以认领此论文并将其添加到您的个人资料中。
推荐
暂无数据