A Systematic Literature Review of Ethical Challenges Related to Medical and Public Health Data Sharing in China.

IF 1.7 4区 哲学 Q2 ETHICS Journal of Empirical Research on Human Research Ethics Pub Date : 2021-12-01 Epub Date: 2021-09-13 DOI:10.1177/15562646211040299
Xiaojie Li, Yali Cong
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引用次数: 2

Abstract

Although stakeholders in China have begun promoting medical and public health data sharing, a large portion of data cannot flow freely across research teams and borders and be converted into "big data." To identify the ethical challenges that are considered to hinder medical and public health data sharing, we performed a systematic literature review pertaining to medical and health data sharing in China. A total of 2959 unique records were retrieved through the database search, 61 of which were included in the final synthesis after full-text screening. This review provides an overview of the current ethical challenges and barriers involved in data sharing for healthcare purposes in China. Through the systematic review of evidence from peer-reviewed literature and dissertations, we identified barriers and ethical challenges grouped in a taxonomy of capacity building needs, balancing different stakeholders' interests, scientific and social value, and the data subjects' rights, public trust and engagement. Best practices and educational implications were suggested based on our findings.

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中国医疗和公共卫生数据共享相关伦理挑战的系统文献综述
虽然中国的利益相关者已经开始推动医疗和公共卫生数据共享,但很大一部分数据无法在研究团队和边界之间自由流动,无法转化为“大数据”。为了确定被认为阻碍医疗和公共卫生数据共享的伦理挑战,我们进行了与中国医疗和卫生数据共享有关的系统文献综述。通过数据库检索,共检索到2959条unique record,其中61条经过全文筛选后纳入最终的合成。这篇综述概述了目前中国医疗保健数据共享的伦理挑战和障碍。通过对同行评议文献和论文证据的系统回顾,我们确定了能力建设需求分类中的障碍和伦理挑战,平衡了不同利益相关者的利益、科学和社会价值,以及数据主体的权利、公众信任和参与。根据我们的研究结果,提出了最佳实践和教育意义。
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来源期刊
CiteScore
3.50
自引率
7.70%
发文量
30
审稿时长
>12 weeks
期刊介绍: The Journal of Empirical Research on Human Research Ethics (JERHRE) is the only journal in the field of human research ethics dedicated exclusively to empirical research. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. The journal''s distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality double-blind peer-reviewed original articles.
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