Broekstra R, Maeckelberghe E L M, Aris-Meijer J L, Stolk R P, Otten S
Department of Epidemiology, University Medical Center Groningen, University of Groningen, PO Box 30.001, FA 40, 9700, RB, Groningen, The Netherlands.
Department of Social Psychology, Faculty of Behavioral and Social Sciences, University of Groningen, Groningen, The Netherlands.
BMC Med Ethics. 2020 Jul 25;21(1):62. doi: 10.1186/s12910-020-00504-3.
Large-scale, centralized data repositories are playing a critical and unprecedented role in fostering innovative health research, leading to new opportunities as well as dilemmas for the medical sciences. Uncovering the reasons as to why citizens do or do not contribute to such repositories, for example, to population-based biobanks, is therefore crucial. We investigated and compared the views of existing participants and non-participants on contributing to large-scale, centralized health research data repositories with those of ex-participants regarding the decision to end their participation. This comparison could yield new insights into motives of participation and non-participation, in particular the behavioural change of withdrawal.
We conducted 36 in-depth interviews with ex-participants, participants, and non-participants of a three-generation, population-based biobank in the Netherlands. The interviews focused on the respondents' decision-making processes relating to their participation in a large-scale, centralized repository for health research data.
The decision of participants and non-participants to contribute to the biobank was motivated by a desire to help others. Whereas participants perceived only benefits relating to their participation and were unconcerned about potential risks, non-participants and ex-participants raised concerns about the threat of large-scale, centralized public data repositories and public institutes, such as social exclusion or commercialization. Our analysis of ex-participants' perceptions suggests that intrapersonal characteristics, such as levels of trust in society, participation conceived as a social norm, and basic societal values account for differences between participants and non-participants.
Our findings indicate the fluidity of motives centring on helping others in decisions to participate in large-scale, centralized health research data repositories. Efforts to improve participation should focus on enhancing the trustworthiness of such data repositories and developing layered strategies for communication with participants and with the public. Accordingly, personalized approaches for recruiting participants and transmitting information along with appropriate regulatory frameworks are required, which have important implications for current data management and informed consent procedures.
大规模的集中式数据存储库在促进创新性健康研究方面正发挥着至关重要且前所未有的作用，这为医学科学带来了新机遇，也引发了困境。因此，找出公民参与或不参与此类存储库（例如基于人群的生物样本库）的原因至关重要。我们调查并比较了现有参与者和非参与者对于参与大规模集中式健康研究数据存储库的看法，以及曾经参与者对于终止参与决定的看法。这种比较可能会为参与和不参与的动机，尤其是退出行为的变化，带来新的见解。
我们对荷兰一个三代人参与的基于人群的生物样本库的曾经参与者、现有参与者和非参与者进行了36次深入访谈。访谈聚焦于受访者参与大规模集中式健康研究数据存储库的决策过程。
参与者和非参与者决定向生物样本库提供数据的动机是想要帮助他人。参与者只看到了参与带来的好处，并不担心潜在风险，而非参与者和曾经参与者则对大规模集中式公共数据存储库和公共机构的威胁表示担忧，比如社会排斥或商业化。我们对曾经参与者看法的分析表明，个人内在特征，如社会信任水平、被视为社会规范的参与以及基本社会价值观，导致了参与者和非参与者之间的差异。
我们的研究结果表明，在参与大规模集中式健康研究数据存储库的决策中，以帮助他人为核心的动机具有流动性。提高参与度的努力应集中在增强此类数据存储库的可信度，以及制定与参与者和公众沟通的分层策略上。因此，需要个性化的参与者招募和信息传递方法以及适当的监管框架，这对当前的数据管理和知情同意程序具有重要意义。
