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Is there a duty to participate in digital epidemiology?
Life Sciences, Society and Policy Pub Date : 2018-05-09 , DOI: 10.1186/s40504-018-0074-1
Brent Mittelstadt 1 , Justus Benzler 2 , Lukas Engelmann 3 , Barbara Prainsack 4, 5 , Effy Vayena 6
Affiliation  

This paper poses the question of whether people have a duty to participate in digital epidemiology. While an implied duty to participate has been argued for in relation to biomedical research in general, digital epidemiology involves processing of non-medical, granular and proprietary data types that pose different risks to participants. We first describe traditional justifications for epidemiology that imply a duty to participate for the general public, which take account of the immediacy and plausibility of threats, and the identifiability of data. We then consider how these justifications translate to digital epidemiology, understood as an evolution of traditional epidemiology that includes personal and proprietary digital data alongside formal medical datasets. We consider the risks imposed by re-purposing such data for digital epidemiology and propose eight justificatory conditions that should be met in justifying a duty to participate for specific digital epidemiological studies. The conditions are then applied to three hypothetical cases involving usage of social media data for epidemiological purposes. We conclude with a list of questions to be considered in public negotiations of digital epidemiology, including the application of a duty to participate to third-party data controllers, and the important distinction between moral and legal obligations to participate in research.

中文翻译:

有义务参加数字流行病学吗?

本文提出了人们是否有义务参与数字流行病学的问题。一般而言,虽然有人暗示与生物医学研究有关的隐含参与义务,但数字流行病学涉及处理对参与者构成不同风险的非医学,粒状和专有数据类型。我们首先描述流行病学的传统理由,这意味着有义务让公众参与其中,同时考虑到威胁的直接性和合理性以及数据的可识别性。然后,我们考虑这些理由如何转化为数字流行病学,数字流行病学是传统流行病学的发展,包括个人和专有数字数据以及正式的医学数据集。我们考虑了将此类数据重新用于数字流行病学所带来的风险,并提出了八个理由条件,以证明有义务参加特定的数字流行病学研究。然后将条件应用于三个假设案例,这些案例涉及将社交媒体数据用于流行病学目的。我们以数字流行病学的公共谈判中要考虑的一系列问题作为结尾,包括对第三方数据控制者施加参与义务的义务,以及参与研究的道德义务与法律义务之间的重要区别。然后将条件应用于三个假设案例,这些案例涉及将社交媒体数据用于流行病学目的。我们以数字流行病学的公共谈判中要考虑的一系列问题作为结尾,包括对第三方数据控制者施加参与义务的义务,以及参与研究的道德义务与法律义务之间的重要区别。然后将条件应用于三个假设案例,这些案例涉及将社交媒体数据用于流行病学目的。我们以数字流行病学的公共谈判中要考虑的一系列问题作为结尾,包括对第三方数据控制者施加参与义务的义务,以及参与研究的道德义务与法律义务之间的重要区别。
更新日期:2018-05-09
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