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实践中的研究伦理:对精神健康服务使用者和亲属参与的定性健康研究中遇到的伦理问题的分析。

Research ethics in practice: An analysis of ethical issues encountered in qualitative health research with mental health service users and relatives.

机构信息

Institute for Medical Ethics and History of Medicine, Ruhr University Bochum, Markstr. 258a, 44799, Bochum, Germany.

Department of Psychiatry, Psychotherapy and Preventive Medicine, LWL University Hospital, Ruhr University Bochum, Bochum, Germany.

出版信息

Med Health Care Philos. 2023 Dec;26(4):517-527. doi: 10.1007/s11019-023-10169-5. Epub 2023 Aug 28.

DOI:10.1007/s11019-023-10169-5
PMID:37639076
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10725844/
Abstract

The ethics review of qualitative health research poses various challenges that are due to a mismatch between the current practice of ethics review and the nature of qualitative methodology. The process of obtaining ethics approval for a study by a research ethics committee before the start of a research study has been described as "procedural ethics" and the identification and handling of ethical issues by researchers during the research process as "ethics in practice." While some authors dispute and other authors defend the use of procedural ethics in relation to qualitative health research, there is general agreement that it needs to be supplemented with ethics in practice. This article aims to provide an illustration of research ethics in practice by reflecting on the ways in which we identified and addressed ethical and methodological issues that arose in the context of an interview study with mental health service users and relatives. We describe the challenges we faced and the solutions we found in relation to the potential vulnerability of research participants, the voluntariness of consent, the increase of participant access and the heterogeneity of the sample, the protection of privacy and internal confidentiality, and the consideration of personal and contextual factors.

摘要

定性健康研究的伦理审查带来了各种挑战,这是由于当前的伦理审查实践与定性方法的性质不匹配造成的。在研究开始前,研究伦理委员会对研究进行伦理审查的过程被描述为“程序伦理”,而研究人员在研究过程中识别和处理伦理问题则被描述为“实践中的伦理”。虽然一些作者对程序伦理在定性健康研究中的应用提出质疑,而另一些作者则为之辩护,但人们普遍认为,有必要将其与实践中的伦理相结合。本文旨在通过反思我们在一项与心理健康服务使用者和亲属进行的访谈研究中遇到的伦理和方法问题的方式,来举例说明实践中的研究伦理。我们描述了我们在研究参与者的潜在脆弱性、同意的自愿性、增加参与者的接触和样本的异质性、隐私和内部保密性的保护以及个人和背景因素的考虑方面所面临的挑战和找到的解决方案。

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Research ethics in practice: An analysis of ethical issues encountered in qualitative health research with mental health service users and relatives.实践中的研究伦理:对精神健康服务使用者和亲属参与的定性健康研究中遇到的伦理问题的分析。
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本文引用的文献

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IRBs and the Protection-Inclusion Dilemma: Finding a Balance.IRBs 与保护-纳入困境:寻求平衡。
Am J Bioeth. 2023 Jun;23(6):75-88. doi: 10.1080/15265161.2022.2063434. Epub 2022 Apr 28.
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Commentary 1: Research with Persons Under Involuntary Commitment-Ethical Issues Surrounding Competence and Voluntariness.评论1:对非自愿住院者的研究——围绕能力与自愿性的伦理问题。
J Empir Res Hum Res Ethics. 2019 Dec;14(5):475-478. doi: 10.1177/1556264619847322a.
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Commentary 2: Qualitative Research with Vulnerable Persons-How to Ensure that Burdens and Benefits are Proportional and Fairly Distributed.评论2:对弱势群体的定性研究——如何确保负担与收益成比例且公平分配。
J Empir Res Hum Res Ethics. 2019 Dec;14(5):479-482. doi: 10.1177/1556264619847322b.
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Recognizing Risk and Vulnerability in Research Ethics: Imagining the "What Ifs?".认识研究伦理中的风险与脆弱性:设想“如果……会怎样?”
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The "Vulnerability" of Psychiatric Research Participants: Why This Research Ethics Concept Needs to Be Revisited.精神科研究参与者的“脆弱性”:为何这一研究伦理概念需要重新审视。
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