PURPOSE:Studies have begun exploring whether researchers should return incidental findings in genomic studies, and if so, which findings should be returned; however, how researchers make these decisions-the processes and factors involved-has remained largely unexplored. METHODS:We interviewed 28 genomics researchers in-depth about their experiences and views concerning the return of incidental findings. RESULTS:Researchers often struggle with questions concerning which incidental findings to return and how to make those decisions. Multiple factors shape their views, including information about the gene variant (e.g., pathogenicity and disease characteristics), concerns about participants' well-being and researcher responsibility, and input from external entities. Researchers weigh the evidence, yet they face conflicting pressures, with relevant data frequently being unavailable. Researchers vary in who they believe should decide: participants, principal investigators, institutional review boards, and/or professional organizations. Contextual factors can influence these decisions, including policies governing return of results by institutions and biobanks and the study design. Researchers vary in desires for: guidance from institutions and professional organizations, changes to current institutional processes, and community-wide genetics education. CONCLUSION:These data, the first to examine the processes by which researchers make decisions regarding the return of genetic incidental findings, highlight several complexities involved and have important implications for future genetics research, policy, and examinations of these issues.

译文

目的:研究已经开始探索研究人员是否应该返回基因组研究中的偶然发现,如果是,应该返回哪些发现;然而,研究人员如何做出这些决定-涉及的过程和因素-仍未得到充分探索。
方法:我们采访了28位基因组学研究人员,深入了解了他们的经验和关于偶然发现返回的观点。
结果:研究人员经常会遇到有关返回哪些偶然发现以及如何做出决定的问题。多种因素影响着他们的观点,包括有关基因变异的信息(例如,致病性和疾病特征),对参与者的福祉和研究人员责任的关注,以及来自外部实体的投入。研究人员权衡了证据,但面临着相互矛盾的压力,经常无法获得相关数据。研究人员在他们认为应该决定的人方面有所不同:参与者,主要研究人员,机构审查委员会和/或专业组织。上下文因素可能会影响这些决策,包括管理机构和生物库回报结果的政策以及研究设计。研究人员在以下方面的愿望各不相同:机构和专业组织的指导,当前机构流程的变更以及社区范围的遗传学教育。
结论:这些数据是第一个检查研究人员做出有关遗传偶然发现返回结果的决策过程的数据,这些数据突出了所涉及的若干复杂性,并对未来的遗传学研究,政策以及对这些问题的检查具有重要意义。

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