在研究和产品改进研究中保护消费者心理健康应用程序的用户:一项访谈研究

IF 2.6 4区 哲学 Q1 ETHICS
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引用次数: 0

摘要

摘要 应用程序用户在日常使用消费者心理健康应用程序(CMHA)过程中产生的心理健康相关数据正越来越多地被用于研究和产品改进研究。然而,目前仍不清楚研究人员和应用程序开发人员应采取哪些伦理保障措施和实践来保护这些研究中的用户,也有人对这些措施和实践目前在 CMHA 中的实施情况表示担忧。为了更好地了解哪些伦理保障措施和实践得以实施、实施的原因和方式,我们采访了 17 位曾参与将 CMHA 数据用于研究的应用程序开发人员和研究人员。受访者讨论了对利益相关者利益的影响、知情同意的充分性阈值和程序变更、数据保护、收集应用程序用户观点、在应用程序设计和研究实施中代表用户以及确保充分支持等问题。尽管受访者对如何以及为什么要实施这些伦理保障措施和做法的推理存在相当大的差异和一些差距,但受访者对各种一般推理的看法趋于一致。这样就可以形成一个连贯而又细致入微的论述,这对未来的 CMHA 研究可能会有所帮助,并能促进对伦理保障措施和实践在这些研究中的作用进行进一步的规范性调查。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Safeguarding Users of Consumer Mental Health Apps in Research and Product Improvement Studies: an Interview Study

Abstract

Mental health-related data generated by app users during the routine use of Consumer Mental Health Apps (CMHAs) are being increasingly leveraged for research and product improvement studies. However, it remains unclear which ethical safeguards and practices should be implemented by researchers and app developers to protect users during these studies, and concerns have been raised over their current implementation in CMHAs. To better understand which ethical safeguards and practices are implemented, why and how, 17 app developers and researchers were interviewed who had been involved in using CMHA data for studies. Interviewees discussed the impact on stakeholder interests, sufficiency thresholds and procedural alterations of informed consent, data protection, gathering app user perspectives and representing users in app design and study conduct, and ensuring adequate support. Although the reasoning behind how and why these ethical safeguards and practices should be implemented showed considerable variability and several gaps, interviewees converged on various general lines of reasoning. This allowed for the development of a coherent and nuanced account that could prove useful for future CMHA studies and which could stimulate further normative investigation of the role of ethical safeguards and practices in these studies.

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来源期刊
Neuroethics
Neuroethics MEDICAL ETHICS-
CiteScore
5.50
自引率
7.10%
发文量
31
审稿时长
>12 weeks
期刊介绍: Neuroethics is an international, peer-reviewed journal dedicated to academic articles on the ethical, legal, political, social and philosophical questions provoked by research in the contemporary sciences of the mind and brain; especially, but not only, neuroscience, psychiatry and psychology. The journal publishes articles on questions raised by the sciences of the brain and mind, and on the ways in which the sciences of the brain and mind illuminate longstanding debates in ethics and philosophy.
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