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群体在不受监管的移动健康研究中是否具有道德地位?

Do Groups Have Moral Standing in Unregulated mHealth Research?

机构信息

Joon-Ho Yu, M.P.H., Ph.D., is a Research Assistant Professor in the Division of Genetic Medicine, Division of Bioethics and Palliative Care, Department of Pediatrics; Institute for Public Health Genetics, Department of Biostatistics, at the University of Washington in Seattle, WA; and a member of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital and Research Institute in Seattle, WA. Eric Juengst, Ph.D., is the Director of the Center for Bioethics and Professor of Social Medicine in the School of Medicine of the University of North Carolina at Chapel Hill, NC.

出版信息

J Law Med Ethics. 2020 Mar;48(1_suppl):122-128. doi: 10.1177/1073110520917037.

Abstract

Biomedical research using data from participants' mobile devices borrows heavily from the ethos of the "citizen science" movement, by delegating data collection and transmission to its volunteer subjects. This engagement gives volunteers the opportunity to feel like partners in the research and retain a reassuring sense of control over their participation. These virtues, in turn, give both grass-roots citizen science initiatives and institutionally sponsored mHealth studies appealing features to flag in recruiting participants from the public. But while grass-roots citizen science projects are often community-based, mHealth research ultimately depends on the individuals who own and use mobile devices. This inflects the ethos of mHealth research towards a celebration of individual autonomy and empowerment, at the expense of its implications for the communities or groups to which its individual participants belong. But the prospects of group harms - and benefits - from mHealth research are as vivid as they are in other forms of data-intensive "precision health" research, and will be important to consider in the design of any studies using this approach.

摘要

利用参与者移动设备数据进行的生物医学研究大量借鉴了“公民科学”运动的精神,将数据收集和传输委托给志愿参与者。这种参与使志愿者有机会成为研究的合作伙伴,并对其参与保持一种令人安心的控制感。反过来,这些优点使基层公民科学倡议和机构赞助的移动健康研究在从公众中招募参与者时具有吸引人的特点。但是,虽然基层公民科学项目通常以社区为基础,但移动健康研究最终取决于拥有和使用移动设备的个人。这使得移动健康研究的精神倾向于颂扬个人自主权和赋权,而牺牲了其对个人参与者所属社区或群体的影响。但是,移动健康研究可能会给群体带来危害——以及好处——就像在其他形式的数据密集型“精准健康”研究中一样明显,在使用这种方法进行任何研究的设计时,都需要考虑这些问题。

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