Disclosure of incidental findings in cancer genomic research: investigators' perceptions on obligations and barriers
Disclosure of incidental findings in cancer genomic research: investigators' perceptions on obligations and barriers
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DOI：
10.1111/cge.12540
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发表时间：
2015-10-01
影响因子：
3.5
通讯作者：
Hebert, J.
中科院分区：
文献类型：
--
作者：
Kleiderman, E.;Avard, D.;Hebert, J.
尽管围绕偶然发现 (IF) 进行了大量研究，但提供给研究人员的指南和信息仍然不具体、不明确，并且常常将行动过程概括给该领域的每个人。我们探讨了研究者对于遗传研究中 IF 回归的看法和经验。研究人员和临床医生研究人员受邀参加魁北克省和安大略省的半结构化电话访谈。二十名专业人士参与，并使用主题分析来分析转录。出现了四个背景要素：（i）结果的重要性程度，（ii）对人的尊重，（iii）基础设施影响，以及（iv）专业责任。我们的研究结果表明，所有调查人员都围绕 IF 的回归提出了类似的背景因素。然而，参与者对职业责任理解的体验也出现了一些细微差别。由于存在细微差别，一刀切的方法是不合适的，这表明在有关 IF 的决策中应考虑具体情况。
Although there has been significant research surrounding incidental findings (IFs), the guidelines and information provided to investigators remain unspecific, unclear, and often generalize the course of action to everyone in the field. We explored the perceptions and experiences of investigators regarding the return of IFs in genetic research. Researchers and clinician-researchers were invited to participate in semi-structured telephone interviews in Quebec and Ontario. Twenty professionals participated, and thematic analysis was used to analyze the transcriptions. Four contextual elements emerged: (i) degree of significance of results, (ii) respect for persons, (iii) infrastructure implications, and (iv) professional responsibilities. Our findings demonstrate that all investigators raised similar contextual elements surrounding the return of IFs. However, some nuances in participants' experiences of the understanding of professional responsibilities also emerged. Because of the existing nuances, a one-size-fits-all approach is inappropriate, suggesting that context ought to be considered in decisions about IFs.