Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings

被引：53

作者：

Bull, Susan ^{[1
]}

Cheah, Phaik Yeong ^{[2
,5
]}

Denny, Spencer ^{[6
]}

Jao, Irene ^{[8
]}

Marsh, Vicki ^{[3
,8
]}

Merson, Laura ^{[9
]}

More, Neena Shah ^{[10
]}

Le Nguyen Thanh Nhan ^{[11
]}

Osrin, David ^{[12
]}

Tangseefa, Decha ^{[13
]}

Wassenaar, Douglas ^{[7
]}

Parker, Michael ^{[4
]}

机构：

[1] Univ Oxford, Ethox Ctr, Oxford OX3 7LF, England

[2] Univ Oxford, Ethox Ctr, Eth & Engagement, Oxford OX3 7LF, England

[3] Univ Oxford, Oxford OX3 7LF, England

[4] Univ Oxford, Ethox Ctr, Bioeth, Oxford OX3 7LF, England

[5] Mahidol Univ, Bangkok 10700, Thailand

[6] Univ KwaZulu Natal, Sch Appl Human Sci, Psychol, Pietermaritzburg, South Africa

[7] Univ KwaZulu Natal, Sch Appl Human Sci, Pietermaritzburg, South Africa

[8] KEMRI Wellcome Trust Res Programme, Kilifi, Kenya

[9] Oxford Univ Clin Res Unit, Clin Trials Unit, Ho Chi Minh City, Vietnam

[10] Soc Nutr Educ & Hlth Act, Bombay, Maharashtra, India

[11] Childrens Hosp 1, Outreach & Int Dept, Ho Chi Minh City, Vietnam

[12] UCL, London WC1E 6BT, England

[13] Thammasat Univ, Fac Polit Sci, Bangkok, Thailand

来源：

JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS | 2015年 / 10卷 / 03期

基金：

英国惠康基金;

关键词：

biomedical research ethics; data sharing; data release; research data; research governance; low-income countries; middle-income countries; clinical research; health policy; privacy; trust; CLINICAL-TRIAL DATA; IMPROVE PUBLIC-HEALTH; PATIENT DATA; VIEWS; CONSENT; ACCESS; EXPERIENCES; RESPECT;

D O I：

10.1177/1556264615594606

中图分类号：

B82 [伦理学（道德学）];

学科分类号：

摘要：

Sharing individual-level data from clinical and public health research is increasingly being seen as a core requirement for effective and efficient biomedical research. This article discusses the results of a systematic review and multisite qualitative study of key stakeholders' perspectives on best practices in ethical data sharing in low- and middle-income settings. Our research suggests that for data sharing to be effective and sustainable, multiple social and ethical requirements need to be met. An effective model of data sharing will be one in which considered judgments will need to be made about how best to achieve scientific progress, minimize risks of harm, promote fairness and reciprocity, and build and sustain trust.

引用

页码：302 / 313

页数：12

共 68 条

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