Incidental findings in genetics research using archived DNA
Incidental findings in genetics research using archived DNA
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DOI：
10.1111/j.1748-720x.2008.00271.x
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发表时间：
2008-06-01
影响因子：
2.1
通讯作者：
Clayton, Ellen Wright
中科院分区：
文献类型：
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作者：
Clayton, Ellen Wright
尽管一些评论员呼吁披露遗传学研究中的偶然发现，但有几个因素支持谨慎行事。遗传学技术有能力揭示大量信息。限制披露的最有力论据是，许多研究是在未经同意的情况下进行的，因此个人参与者可能根本不知道研究正在进行。通常，这项工作是由调查人员在当事人事先没有接触过的机构中完成的。过去的实践也很重要；遗传学研究人员历来选择不披露偶然的发现，其中最常见的是错误归因的亲子关系和多效性等位基因（例如 ApoE）。当有选择时，许多人选择不进行基因检测。在获得研究同意后讨论偶然发现的主题可能是可取的，但考虑到在没有事先讨论的情况下出现不必要的意外的风险，偶然发现的潜在效用在向个人提供之前就应该非常高。
Despite calls by some commentators for disclosing incidental findings in genetics research, several factors weigh in favor of caution. The technology of genetics has the power to uncover a vast array of information. The most potent argument for restraint in disclosure is that much research is pursued without consent so that the individual participant may not know that research is being conducted at all. Often the work is done by investigators and at institutions with which the person has no prior contact. Past practice is also relevant; genetics researchers historically have chosen not to disclose incidental findings, of which misattributed paternity and pleiotropic alleles such as ApoE have been the most common. Many people choose not to have genetic tests when given a choice. It may be desirable to discuss the topic of incidental findings when consent for research is obtained, but given the risk of unwanted surprise when there has been no prior discussion, the potential utility of incidental findings should be very high before they are even offered to individuals.