Researcher perspectives on disclosure of incidental findings in genetic research.
Researcher perspectives on disclosure of incidental findings in genetic research.
复制标题
研究人员对遗传研究中偶然发现的披露的观点。
DOI：
10.1525/jer.2010.5.3.31
复制
发表时间：
2010-09
期刊：
影响因子：
--
通讯作者：
Edwards K
中科院分区：
文献类型：
--
作者：
Meacham MC;Starks H;Burke W;Edwards K
基因研究可以产生超出研究目的的信息，但可能引起研究参与者的临床或个人兴趣。我们对 44 名研究人员进行了半结构化访谈，他们被要求描述他们如何应对有关向研究参与者披露具有意外临床意义的发现的假设小插曲。使用内容和主题分析来转录和分析访谈。研究人员关于是否披露偶然发现的决策过程受到三个主要领域中潜在冲突的职责的约束：信息质量、遵守规则和参与者福利。研究人员可以采取多种行动来为偶然发现做好准备，包括： 在知情同意文件中添加特定语言，以明确说明研究人员将如何处理披露；探索参与者在同意过程中如何做好准备，以决定在出现偶然发现时他们希望如何接触；制定适当传达个人结果的程序，并根据参与者的偏好提供后续支持；并且，在基因研究中，了解所研究的基因所表达的一系列性状。
Genetic research can produce information that is beyond the aims of the research study yet may be of clinical or personal interest to study participants. We conducted semi-structured interviews with 44 researchers who were asked to describe how they would respond to a hypothetical vignette regarding the disclosure of findings with unanticipated clinical significance to research study participants. Interviews were transcribed and analyzed using content and thematic analyses. Researchers’ decision-making processes about whether to disclose incidental findings were governed by potentially conflicting duties in three primary domains: information quality, adherence to rules, and participant welfare. There are several actions researchers can take to prepare for incidental findings, including: adding specific language in informed consent documents to state clearly how investigators will handle disclosure; exploring how prepared participants might be during the consent process to make decisions about how they would like to be approached in the event of incidental findings; developing procedures for appropriately communicating individual results and providing follow-up support based on participant preferences; and, in genetic research, having an awareness of the range of traits expressed by the genes under study.
登录
查看更多内容
影响因子：
3.2
作者：
Hsieh, HF;Shannon, SE
通讯作者：
Shannon, SE
影响因子：
13.4
作者：
Ravitsky, Vardit;Wilfond, Benjamin S.
通讯作者：
Wilfond, Benjamin S.
影响因子：
2.1
作者：
Keane, Moira A.
通讯作者：
Keane, Moira A.
影响因子：
13.4
作者：
Murphy, Juli;Scott, Joan;Hudson, Kathy
通讯作者：
Hudson, Kathy
影响因子：
120.7
作者：
Beskow, LM;Burke, W;Khoury, MJ
通讯作者：
Khoury, MJ