Division of Innovation and Education, Iwate Tohoku Medical Megabank Organization, Disaster Reconstruction Center, Iwate Medical University, Iwate, Japan.
Department of Clinical Genetics, School of Medicine, Iwate Medical University, Iwate, Japan.
J Hum Genet. 2017 Dec;62(12):1037-1048. doi: 10.1038/jhg.2017.81. Epub 2017 Aug 10.
There are ongoing debates on issues relating to returning individual research results (IRRs) and incidental findings (IFs) generated by genetic research in population-based biobanks. To understand how to appropriately return genetic results from biobank studies, we surveyed preferences for returning IRRs and IFs among participants of the Tohoku Medical Megabank Project (TMM). We mailed a questionnaire to individuals enrolled in the TMM cohort study (Group 1; n=1031) and a group of Tohoku region residents (Group 2; n=2314). The respondents were required to be over 20 years of age. Nearly 90% of Group 1 participants and over 80% of Group 2 participants expressed a preference for receiving their genetic test results. Furthermore, over 60% of both groups preferred to receive their genetic results 'from a genetic specialist.' A logistic regression analysis revealed that engaging in 'health-conscious behaviors' (such as regular physical activity, having a healthy diet, intentionally reducing alcohol intake and/or smoking and so on) was significant, positively associated with preferring to receive their genetic test results (odds ratio=2.397 (Group 1) and 1.897 (Group 2)). Our findings provided useful information and predictors regarding the return of IRRs and IFs in a population-based biobank.
关于从基于人群的生物库中的遗传研究中返还个体研究结果 (IRRs) 和偶然发现 (IFs) 的问题,目前存在一些争论。为了了解如何适当返还生物库研究的遗传结果,我们调查了参与东北医疗巨型生物银行项目 (Tohoku Medical Megabank Project,TMM) 的参与者对返还 IRRs 和 IFs 的偏好。我们向 TMM 队列研究的参与者 (第 1 组;n=1031) 和一组东北地区居民 (第 2 组;n=2314) 邮寄了一份问卷。要求受访者年龄在 20 岁以上。第 1 组的近 90%和第 2 组的超过 80%的参与者表示希望收到他们的基因检测结果。此外,两组中有超过 60%的人更喜欢从“遗传专家”那里获得他们的遗传结果。逻辑回归分析显示,“有健康意识的行为”(如定期体育锻炼、健康饮食、有意减少饮酒和/或吸烟等)是显著的,与希望收到他们的基因检测结果呈正相关(比值比=2.397(第 1 组)和 1.897(第 2 组))。我们的研究结果提供了有关在基于人群的生物库中返还 IRRs 和 IFs 的有用信息和预测因素。