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研究伦理中的脆弱性:评估脆弱性和实施保护的呼吁。

Vulnerability in research ethics: A call for assessing vulnerability and implementing protections.

机构信息

Department of Government, University of Texas at Austin, Austin, TX 78712.

Department of Government, University of Essex, Colchester CO4 3SQ, United Kingdom.

出版信息

Proc Natl Acad Sci U S A. 2024 Aug 20;121(34):e2322821121. doi: 10.1073/pnas.2322821121. Epub 2024 Aug 14.

DOI:10.1073/pnas.2322821121
PMID:39141349
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11348164/
Abstract

Ethics standards reference the need for special consideration of vulnerable populations, such as pregnant women, incarcerated individuals, and minors. The concept of vulnerability is poorly conceptualized in the medical sciences where it originated, and its application to the social sciences is even more challenging. Social science researchers may unwittingly fail to appreciate preexisting vulnerabilities and indeed may be responsible for inducing new research-related vulnerability. In this paper, we present the first comprehensive coding of country-level vulnerability designations. Specifically, we coded all 355 official documents governing social/behavioral human subjects research for the 107 countries with such regulations and identified 68 distinct vulnerability categories. The data reveal substantial regional variation, overemphasis of categories derived from medical sciences, neglect of critical categories such as displacement, and likely heterogeneity within and across groups. The article provides a conceptual framework that shifts the problem away from static, enumerated categories toward emphasis on research-induced vulnerability. Based on our conceptualization and coding, we present a framework for assessing vulnerability and implementing appropriate protections.

摘要

伦理标准参考了需要特别考虑弱势群体的情况,如孕妇、被监禁者和未成年人。这一概念在医学科学的发源地概念化得很差,将其应用于社会科学甚至更具挑战性。社会科学研究人员可能会不自觉地无法理解预先存在的脆弱性,甚至可能对新的与研究相关的脆弱性负有责任。在本文中,我们提出了国家层面脆弱性指定的第一个全面编码。具体来说,我们对有此类规定的 107 个国家的 355 份管理社会/行为人类主体研究的正式文件进行了编码,并确定了 68 个不同的脆弱性类别。数据显示出了大量的地区差异,过度强调了源自医学科学的类别,忽视了流离失所等关键类别,并且在组内和组间可能存在异质性。本文提供了一个概念框架,将问题从静态的、列举的类别转移到对研究引起的脆弱性的重视。基于我们的概念化和编码,我们提出了一个评估脆弱性和实施适当保护的框架。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/72b4/11348164/840238b151f5/pnas.2322821121fig02.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/72b4/11348164/649899a37cc3/pnas.2322821121fig01.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/72b4/11348164/840238b151f5/pnas.2322821121fig02.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/72b4/11348164/649899a37cc3/pnas.2322821121fig01.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/72b4/11348164/840238b151f5/pnas.2322821121fig02.jpg

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