A Framework for Analyzing the Ethics of Disclosing Genetic Research Findings
A Framework for Analyzing the Ethics of Disclosing Genetic Research Findings
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DOI：
10.1111/jlme.12135
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发表时间：
2014-06-01
影响因子：
2.1
通讯作者：
Berkman, Benjamin E.
中科院分区：
文献类型：
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作者：
Eckstein, Lisa;Garrett, Jeremy R.;Berkman, Benjamin E.
在过去的十年中，关于研究人员是否有义务披露遗传研究结果，包括主要和次要发现，一直存在广泛的争论。似乎有一种新兴的（但有争议的）观点认为，研究人员有义务向一些研究参与者披露一些遗传学发现。然而，这一义务的轮廓仍然不清楚，正如本文将探讨的那样，这种混淆大部分是定义或概念性质的。研究者归还次要和其他研究结果的义务范围通常受到术语和概念的限制，如“偶然性”，“分析有效性”，“临床有效性”，“临床相关性”，“临床实用性”，“临床意义”，“可行动性”和“可取性”。不同的作者以不同的方式使用这些术语来描述不同情况下的义务。
Over the past decade, there has been an extensive debate about whether researchers have an obligation to disclose genetic research findings, including primary and secondary findings. There appears to be an emerging (but disputed) view that researchers have some obligation to disclose some genetic findings to some research participants. The contours of this obligation, however, remain unclear.As this paper will explore, much of this confusion is definitional or conceptual in nature. The extent of a researcher's obligation to return secondary and other research findings is often limited by reference to terms and concepts like “incidental,” “analytic validity,” “clinical validity,” “clinical relevance,” “clinical utility,” “clinical significance,” “actionability,” and “desirability.” These terms are used in different ways by different writers to describe obligations in different sorts of cases.