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满足服务不足人群的需求:为更具包容性的医学公民科学制定议程。

Meeting the needs of underserved populations: setting the agenda for more inclusive citizen science of medicine.

机构信息

Institute for History and Ethics in Medicine, Technical University of Munich, Munich, Germany.

Anthropology Department, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.

出版信息

J Med Ethics. 2019 Sep;45(9):617-622. doi: 10.1136/medethics-2018-105253. Epub 2019 Jul 12.

Abstract

In its expansion to genomic, epidemiological and biomedical research, citizen science has been promoted as contributing to the democratisation of medical research and healthcare. At the same time, it has been criticised for reinforcing patterns of exclusion in health and biomedicine, and sometimes even creating new ones. Although citizen science has the potential to make biomedical research more inclusive, the benefits of current citizen science initiatives are not equally accessible for all people-in particular those who are resource-poor, located outside of traditional networks of healthcare services, or members of minorities and marginalised groups. In view of growing public investments in participatory research endeavours, we argue that it should be considered more explicitly if, and how, citizen science could help make research more inclusive, contribute to the public good, and possibly even lead to better and more equitable healthcare. Reflecting on emerging ethical concerns for scientific conduct and best medical practice, we propose a set of relevant considerations for researchers, practitioners, bioethicists, funders and participants who seek to advance ethical practices of citizen-led health initiatives, and address profound differences in position, privilege and power in research.

摘要

在向基因组学、流行病学和生物医学研究的扩展中,公民科学被宣传为有助于医学研究和医疗保健的民主化。与此同时,它也因加剧了健康和生物医学领域的排斥模式而受到批评,有时甚至制造了新的排斥模式。尽管公民科学有可能使生物医学研究更具包容性,但当前公民科学举措的好处并非所有人都能平等获得——特别是那些资源匮乏、位于传统医疗服务网络之外或属于少数群体和边缘群体的人。鉴于公众对参与式研究工作的投资不断增加,我们认为应该更明确地考虑公民科学是否以及如何能够帮助研究更具包容性,为公众利益做出贡献,甚至可能导致更好、更公平的医疗保健。考虑到科学行为和最佳医疗实践中出现的新兴伦理问题,我们为寻求推进公民主导的健康倡议的伦理实践的研究人员、从业者、生物伦理学家、资助者和参与者提出了一系列相关的考虑因素,并解决了研究中立场、特权和权力的深刻差异。

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