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  1. Ethics framework for citizen science and public and patient participation in research.Barbara Groot & Tineke Abma - 2022 - BMC Medical Ethics 23 (1):1-9.
    Background Citizen science and models for public participation in health research share normative ideals of participation, inclusion, and public and patient engagement. Academic researchers collaborate in research with members of the public involved in an issue, maximizing all involved assets, competencies, and knowledge. In citizen science new ethical issues arise, such as who decides, who participates, who is excluded, what it means to share power equally, or whose knowledge counts. This article aims to present an ethics framework that offers a (...)
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  • Ethics, patient rights and staff attitudes in Shanghai's psychiatric hospitals.Liang Su, Jingjing Huang, Weimin Yang, Huafang Li, Yifeng Shen & Yifeng Xu - 2012 - BMC Medical Ethics 13 (1):8-.
    Adherence to ethical principles in clinical research and practice is becoming topical issue in China, where the prevalence of mental illness is rising, but treatment facilities remain underdeveloped. This paper reports on a study aiming to understand the ethical knowledge and attitudes of Chinese mental health professionals in relation to the process of diagnosis and treatment, informed consent, and privacy protection in clinical trials.
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  • Lay REC members: patient or public?Kristina Staley - 2013 - Journal of Medical Ethics 39 (12):780-782.
    In practice, the role of lay members of research ethics committees (RECs) often involves checking the accessibility of written materials, checking that the practical needs of participants have been considered and ensuring that a lay summary of the research will be produced. In this brief report, I argue that all these tasks would be more effectively carried out through a process of patient involvement (PI) in research projects prior to ethical review. Involving patients with direct experience of the topic under (...)
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