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“他宣誓过了”:在一项关于社交网络和人类免疫缺陷病毒/丙型肝炎病毒风险的研究中,参与研究的注射吸毒者对隐私和保密性的看法。

"He's under oath": Privacy and Confidentiality Views Among People Who Inject Drugs Enrolled in a Study of Social Networks and Human Immunodeficiency Virus/Hepatitis C Virus Risk.

机构信息

Department of Anthropology, 14719University of Nebraska-Lincoln, Lincoln, NE, USA.

Center Ethics Education, Fordham University, Bronx, NY, USA.

出版信息

J Empir Res Hum Res Ethics. 2021 Jul;16(3):304-311. doi: 10.1177/15562646211004411. Epub 2021 Mar 26.

Abstract

Despite the promise of social network research, this method raises important ethical questions regarding privacy and confidentiality. Although researchers and bioethicists have considered research obligations in relation to marginal or vulnerable populations, the views of people who inject drugs (PWIDs) have not been sufficiently considered. To elicit participants' views of research obligations, we conducted in-depth interviews with a subset ( = 40) of active PWIDs enrolled in a large social network study. Findings suggest participants have an expectation of confidentiality but believe this obligation need not be absolute and can be waived if a participant violates community norms or place others at risk. Ethics boards should recognize that marginalized populations are able to articulate complex moral views about privacy and confidentiality. Engaging participants in dialogue about the responsible conduct of research presents an opportunity to correct under- or overestimations of research vulnerabilities when such decisions are restricted to the perspectives of investigators or Institutional Review Board members.

摘要

尽管社会网络研究具有一定的前景,但这种方法在隐私和保密性方面引发了重要的伦理问题。尽管研究人员和生物伦理学家已经考虑了与边缘或弱势群体相关的研究义务,但尚未充分考虑到注射毒品者(PWIDs)的观点。为了了解参与者对研究义务的看法,我们对参加大型社会网络研究的一组活跃的 PWIDs 进行了深入访谈( = 40)。研究结果表明,参与者期望保密,但他们认为这种义务不必是绝对的,如果参与者违反社区规范或使他人处于危险之中,可以放弃这种义务。伦理委员会应该认识到,边缘化群体能够阐明关于隐私和保密性的复杂道德观点。让参与者参与关于负责任的研究行为的对话,为纠正研究漏洞的低估或高估提供了机会,因为这些决定仅限于调查人员或机构审查委员会成员的观点。

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本文引用的文献

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