Parziale Andrea, Mascalzoni Deborah
Institute for Biomedicine, Eurac Research, Bolzano, Italy.
Front Psychiatry. 2022 Jun 9;13:873392. doi: 10.3389/fpsyt.2022.873392. eCollection 2022.
Psychiatric research traditionally relies on subjective observation, which is time-consuming and labor-intensive. The widespread use of digital devices, such as smartphones and wearables, enables the collection and use of vast amounts of user-generated data as "digital biomarkers." These tools may also support increased participation of psychiatric patients in research and, as a result, the production of research results that are meaningful to them. However, sharing mental health data and research results may expose patients to discrimination and stigma risks, thus discouraging participation. To earn and maintain participants' trust, the first essential requirement is to implement an appropriate data governance system with a clear and transparent allocation of data protection duties and responsibilities among the actors involved in the process. These include sponsors, investigators, operators of digital tools, as well as healthcare service providers and biobanks/databanks. While previous works have proposed practical solutions to this end, there is a lack of consideration of positive data protection law issues in the extant literature. To start filling this gap, this paper discusses the GDPR legal qualifications of controller, processor, and joint controllers in the complex ecosystem unfolded by the integration of digital biomarkers in psychiatric research, considering their implications and proposing some general practical recommendations.
传统上,精神病学研究依赖于主观观察,这种方法既耗时又费力。智能手机和可穿戴设备等数字设备的广泛使用,使得收集和使用大量用户生成的数据作为“数字生物标志物”成为可能。这些工具还可能有助于提高精神病患者参与研究的程度,从而产生对他们有意义的研究结果。然而,分享心理健康数据和研究结果可能会使患者面临歧视和污名化风险,从而降低他们参与的积极性。为了赢得并维持参与者的信任,首要的基本要求是实施适当的数据治理系统,在参与这一过程的各方(包括赞助商、研究人员、数字工具运营商以及医疗服务提供商和生物样本库/数据库)之间明确且透明地分配数据保护职责。虽然之前的工作已经为此提出了切实可行的解决方案,但现有文献中缺乏对积极数据保护法律问题的考虑。为了开始填补这一空白,本文讨论了在精神病学研究中数字生物标志物整合所展现的复杂生态系统中,数据控制者、处理者和联合控制者的通用数据保护条例(GDPR)法律资质,考虑了它们的影响并提出了一些一般性的实用建议。