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Demographic and prosocial intrapersonal characteristics of biobank participants and refusers: the findings of a survey in the Netherlands.
European Journal of Human Genetics ( IF 3.7 ) Pub Date : 2020-07-31 , DOI: 10.1038/s41431-020-0701-1
Reinder Broekstra 1, 2 , Judith Aris-Meijer 1 , Els Maeckelberghe 3 , Ronald Stolk 1 , Sabine Otten 2
Affiliation  

Research in genetics relies heavily on voluntary contributions of personal data. We aimed to acquire insights into the differences between participants and refusers of participation in a Dutch population-based biobank. Accordingly, we assessed the demographic and prosocial intrapersonal characteristics of respondents who participated (n = 2615) or refused to participate (n = 404) in the Lifelines biobank and databank. Our results indicated that health-related values critically influence participation decisions. The participation threshold for Lifelines was determined by an absence of health-related values and of trust in government. Therefore, considering these factors in communication and recruitment strategies could enhance participation in biomedical research. No indications were found of a stronger general prosociality of participants or their trust in researchers beyond the context of biobanking. This emphasizes the contextual understanding of the decision of participation in biobanking. Our findings may contribute to improving recruitment strategies by incorporating relevant values and/or highlighting prosocial benefits. Moreover, they foreground the need to address trust issues in collaborations between data repositories and commercial companies. Future research should explore how prosocial intrapersonal characteristics drive participation and withdrawal decisions and relate to contextual attributes.



中文翻译:


生物样本库参与者和拒绝者的人口统计和亲社会内部特征:荷兰的一项调查结果。



遗传学研究在很大程度上依赖于个人数据的自愿贡献。我们的目的是深入了解荷兰人口生物库的参与者和拒绝者之间的差异。因此,我们评估了参与( n = 2615)或拒绝参与( n = 404)生命线生物库和数据库的受访者的人口统计和亲社会内部特征。我们的结果表明,与健康相关的价值观严重影响参与决策。生命线的参与门槛是由缺乏健康相关价值观和对政府的信任决定的。因此,在沟通和招聘策略中考虑这些因素可以增强对生物医学研究的参与。没有发现任何迹象表明参与者在生物样本库之外有更强的普遍亲社会性或对研究人员的信任。这强调了对参与生物样本库决策的背景理解。我们的研究结果可能有助于通过纳入相关价值观和/或强调亲社会福利来改进招聘策略。此外,它们还强调需要解决数据存储库和商业公司之间合作中的信任问题。未来的研究应该探索亲社会的内心特征如何驱动参与和退出决策以及如何与情境属性相关。

更新日期:2020-07-31
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