Association of Researcher Characteristics with Views on Return of Incidental Findings from Genomic Research.
Association of Researcher Characteristics with Views on Return of Incidental Findings from Genomic Research.
复制标题
研究人员特征与基因组研究偶然发现的返回观点的关联。
DOI：
10.1007/s10897-014-9817-1
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发表时间：
2015
影响因子：
1.9
通讯作者：
Chung,WendyK
中科院分区：
文献类型：
--
作者：
Wynn,Julia;Martinez,Josue;Duong,Jimmy;Zhang,Yuan;Phelan,Jo;Fyer,Abby;Klitzman,Robert;Appelbaum,PaulS;Chung,WendyK
全外显子组/基因组测序 (WES/WGS) 现在常用于研究，并越来越多地用于临床护理，以确定罕见和未知疾病的遗传基础。通过这些分析产生的偶然发现 (IF) 的管理在研究界存在争议。为了研究基因组研究 IF 的观点如何与研究人员的特征和经验相关，我们调查了基因专业人士，并评估了专业背景和经验对他们观点的影响。没有接受过临床培训、未向研究参与者提供临床护理或有返回研究结果经验的研究人员通常比具有这些特征的同事更倾向于提供 IF 的返回。了解这一点对于充分理解遗传 IF 回归政策可能对参与者、研究人员和基因组研究产生的影响非常重要。
Whole exome/ genome sequencing (WES/WGS) is now commonly used in research and is increasingly used in clinical care to identify the genetic basis of rare and unknown diseases. The management of incidental findings (IFs) generated through these analyses is debated within the research community. To examine how views regarding genomic research IFs are associated with researcher characteristics and experiences, we surveyed genetic professionals and assessed the effect of professional background and experience on their opinions. Researchers who did not have clinical training, provide clinical care to research participants, or have prior experience returning research results were in general more inclined to offer return of IFs than their colleagues with these characteristics. Understanding this will be important to fully appreciate the impact that policies on return of genetic IFs could have on participants, researchers, and genomic research.