Kleiderman E, Avard D, Besso A, Ali-Khan S, Sauvageau G, Hébert J
Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.
Institute for Research in Immunology and Cancer, Université de Montréal, Montreal, Quebec, Canada.
Clin Genet. 2015 Oct;88(4):320-6. doi: 10.1111/cge.12540. Epub 2014 Dec 9.
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.
尽管围绕偶发发现（IFs）已有大量研究，但提供给研究人员的指南和信息仍不具体、不明确，且常常将行动过程一概而论地应用于该领域的每一个人。我们探讨了研究人员对基因研究中偶发发现反馈的看法和经历。邀请了魁北克和安大略省的研究人员和临床研究人员参与半结构化电话访谈。20名专业人员参与了访谈，并采用主题分析法对访谈记录进行分析。出现了四个背景因素：（i）结果的重要程度，（ii）对人的尊重，（iii）基础设施影响，以及（iv）职业责任。我们的研究结果表明，所有研究人员都提出了围绕偶发发现反馈的类似背景因素。然而，参与者在对职业责任理解的经历中也出现了一些细微差别。由于存在这些细微差别，一刀切的方法并不合适，这表明在关于偶发发现的决策中应考虑具体情况。
