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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。

Commentary 2: Qualitative Research with Vulnerable Persons-How to Ensure that Burdens and Benefits are Proportional and Fairly Distributed.

作者信息

Gieselmann Astrid, Efkemann Simone Agnes, Scholten Matthé

机构信息

Institute for Medical Ethics and History of Medicine, Ruhr University Bochum, Germany.

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

出版信息

J Empir Res Hum Res Ethics. 2019 Dec;14(5):479-482. doi: 10.1177/1556264619847322b.

DOI:10.1177/1556264619847322b
PMID:31779545
Abstract

This case commentary investigates whether the risks and benefits of an interview study with persons under involuntary commitment on open-door policies in psychiatry were proportional and fairly distributed. Given that there is little data available on the views of service users on open-door policies, the study had significant social value. Because the individual benefits are limited in studies like this, we recommend that special measures be taken to forestall what has been called the "therapeutic misconception." The study imposed burdens on individual research participants, as evidenced by the distress that a woman with bipolar disorder experienced during the interview. Risks and burdens must be actively monitored in qualitative studies with persons under involuntary commitment. If the actual burdens are disproportional, interviews must be interrupted and risks must be reassessed. A common principle for the fair distribution of the risks and burdens of research participation says that a research study may be carried out with vulnerable persons only if the research aims cannot be attained by including only persons who are not vulnerable. In the study under discussion, both persons who were still involuntarily committed and persons who were no longer committed were included. This indicates that either the aforementioned principle is not fully satisfied or the validity of the study is somewhat compromised. Judging that the latter option is more likely, we contend that this compromise is ethically defensible.

摘要

本病例评论探讨了一项针对精神病学开放政策下非自愿住院患者的访谈研究的风险与益处是否成比例且分配公平。鉴于关于服务使用者对开放政策看法的数据很少,该研究具有重大的社会价值。由于此类研究中个体受益有限,我们建议采取特殊措施以防止所谓的“治疗性误解”。该研究给个体研究参与者带来了负担,一名双相情感障碍女性在访谈期间所经历的痛苦就是证明。在针对非自愿住院患者的定性研究中,必须积极监测风险和负担。如果实际负担不成比例,必须中断访谈并重新评估风险。研究参与风险和负担公平分配的一个共同原则是,只有在仅纳入非弱势人群无法实现研究目标时,才可以对弱势人群开展研究。在讨论的这项研究中,既纳入了仍处于非自愿住院状态的患者,也纳入了已不再住院的患者。这表明要么上述原则未得到充分满足,要么研究的有效性有所受损。判断后一种情况更有可能,我们认为这种折衷在伦理上是合理的。

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引用本文的文献

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