Trust, Respect, and Reciprocity: Informing Culturally Appropriate Data-Sharing Practice in Vietnam

被引:28
作者
Merson, Laura [1 ]
Tran Viet Phong [2 ]
Le Nguyen Thanh Nhan [3 ]
Nguyen Thanh Dung [4 ]
Ta Thi Dieu Ngan [5 ]
Nguyen Van Kinh [6 ]
Parker, Michael [7 ]
Bull, Susan [8 ]
机构
[1] Univ Oxford, Clin Trials Unit, Clin Res Unit, Ho Chi Minh City, Vietnam
[2] Univ Oxford, Clin Res Unit, Ho Chi Minh City, Vietnam
[3] Childrens Hosp 1, Outreach & Int Dept, Ho Chi Minh City, Vietnam
[4] Hosp Trop Dis, Dept Gen Planning, Ho Chi Minh City, Vietnam
[5] Natl Hosp Trop Dis, Dept Sci Res Management, Hanoi, Vietnam
[6] Natl Hosp Trop Dis, Hanoi, Vietnam
[7] Univ Oxford, Ethox Ctr, Bioeth, Oxford OX1 2JD, England
[8] Univ Oxford, Ethox Ctr, Oxford OX1 2JD, England
基金
英国惠康基金;
关键词
data sharing; clinical data; ethics; biomedical data; Vietnam; qualitative methods; information dissemination; access to information; PUBLIC-HEALTH RESEARCH; VIEWS; EXPERIENCES; CONSENT; ACCESS;
D O I
10.1177/1556264615592387
中图分类号
B82 [伦理学(道德学)];
学科分类号
摘要
International science funders and publishers are driving a growing trend in data sharing. There is mounting pressure on researchers in low- and middle-income settings to conform to new sharing policies, despite minimal empirically grounded accounts of the ethical challenges of implementing the policies in these settings. This study used in-depth interviews and focus group discussions with 48 stakeholders in Vietnam to explore the experiences, attitudes, and expectations that inform ethical and effective approaches to sharing clinical research data. Distinct views on the role of trust, respect, and reciprocity were among those that emerged to inform culturally appropriate best practices. We conclude by discussing the challenges that authors of data-sharing policies should consider in this unique context.
引用
收藏
页码:251 / 263
页数:13
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