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针对无家可归女性和被监禁女性开展社区参与式研究的伦理考量

Ethical Considerations for Conducting Community-Engaged Research with Women Experiencing Homelessness and Incarcerated Women.

作者信息

Dickins Kirsten

机构信息

Investigator at the National Institutes of Health (NIH) at the National Institute of Nursing Research (NINR) in the Division of Intramural Research.

出版信息

Ethics Hum Res. 2025 Jan-Feb;47(1):20-33. doi: 10.1002/eahr.60005.

DOI:10.1002/eahr.60005
PMID:39749383
Abstract

Since 1979, The Belmont Report has served as a guidebook for ensuring that basic standards for ethical research are upheld. The Belmont Report calls for special protections of vulnerable research participants, such as people who are incarcerated and economically and educationally disadvantaged individuals who are deemed susceptible to exploitation. With a growing focus on health equity and community-engaged approaches in health equity research, efforts to involve vulnerable participants are increasing. Yet there is little understanding of what matters most to vulnerable populations. This study sought to understand, from participant perspectives, ethical considerations when conducting research with two vulnerable populations: women experiencing homelessness and women who are incarcerated. Health care professionals and staff that work closely with homeless and incarcerated populations were also interviewed. The findings from semistructured interviews with these populations underscore the sustained importance of respect for persons, beneficence, and justice, and further highlight the need for self-determination; privacy/confidentiality; continuous consent; fair treatment; benefit-burden balance; nonauthoritarian relationships; and fair access to research participation. Although The Belmont Report durably serves to ethically guide standard conventional research, the Report's original concepts should be extended to include specific considerations when vulnerable populations are involved in community-engaged research.

摘要

自1979年以来,《贝尔蒙报告》一直作为确保坚持道德研究基本标准的指南。《贝尔蒙报告》呼吁对弱势研究参与者给予特别保护,例如被监禁的人以及在经济和教育方面处于不利地位且被认为易受剥削的个人。随着对健康公平以及健康公平研究中社区参与方法的关注度不断提高,让弱势参与者参与研究的努力也在增加。然而,对于弱势群体最重要的事情却知之甚少。本研究旨在从参与者的角度了解在对两个弱势群体(经历无家可归的妇女和被监禁的妇女)进行研究时的伦理考量。还采访了与无家可归者和被监禁者密切合作的医疗保健专业人员和工作人员。对这些人群进行半结构化访谈的结果强调了尊重个人、行善和公正的持续重要性,并进一步突出了对自决、隐私/保密、持续同意、公平对待、利益负担平衡、非专制关系以及公平参与研究机会的需求。尽管《贝尔蒙报告》长期以来一直为道德规范传统研究提供指导,但该报告的原始概念应予以扩展,以包括弱势群体参与社区参与研究时的具体考量。

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