我们有义务参与数字流行病学吗?

IF 3.1 Q1 Arts and Humanities Life Sciences, Society and Policy Pub Date : 2018-05-09 DOI:10.1186/s40504-018-0074-1
Brent Mittelstadt, Justus Benzler, Lukas Engelmann, Barbara Prainsack, Effy Vayena
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引用次数: 24

摘要

这篇论文提出了人们是否有义务参与数字流行病学的问题。虽然在一般的生物医学研究中有一种隐含的参与义务,但数字流行病学涉及处理非医疗、细粒度和专有数据类型,这些数据类型对参与者构成不同的风险。我们首先描述流行病学的传统理由,这意味着公众有义务参与,考虑到威胁的即时性和合理性,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,理解为传统流行病学的演变,包括个人和专有数字数据以及正式的医疗数据集。我们考虑了将这些数据重新用于数字流行病学所带来的风险,并提出了在证明参与特定数字流行病学研究的义务时应满足的八个正当条件。然后将这些条件应用于涉及为流行病学目的使用社交媒体数据的三个假设案例。最后,我们列出了数字流行病学公开谈判中需要考虑的问题清单,包括第三方数据控制者参与义务的应用,以及参与研究的道德义务和法律义务之间的重要区别。
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Is there a duty to participate in digital epidemiology?

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.

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来源期刊
Life Sciences, Society and Policy
Life Sciences, Society and Policy Arts and Humanities-Philosophy
自引率
0.00%
发文量
0
审稿时长
18 weeks
期刊介绍: The purpose of Life Sciences, Society and Policy (LSSP) is to analyse social, ethical and legal dimensions of the most dynamic branches of life sciences and technologies, and to discuss ways to foster responsible innovation, sustainable development and user-driven social policies. LSSP provides an academic forum for engaged scholarship at the intersection of life sciences, philosophy, bioethics, science studies and policy research, and covers a broad area of inquiry both in emerging research areas such as genomics, bioinformatics, biophysics, molecular engineering, nanotechnology and synthetic biology, and in more applied fields such as translational medicine, food science, environmental science, climate studies, research on animals, sustainability, science education and others. The goal is to produce insights, tools and recommendations that are relevant not only for academic researchers and teachers, but also for civil society, policy makers and industry, as well as for professionals in education, health care and the media, thus contributing to better research practices, better policies, and a more sustainable global society.
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