Dataset Information

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

ABSTRACT: 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.

SUBMITTER: Merson L

PROVIDER: S-EPMC4692260 | biostudies-literature | 2015 Jul

REPOSITORIES: biostudies-literature

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Publications

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

Merson Laura L Phong Tran Viet TV Nhan Le Nguyen Thanh le NT Dung Nguyen Thanh NT Ngan Ta Thi Dieu TT Kinh Nguyen Van NV Parker Michael M Bull Susan S

Journal of empirical research on human research ethics : JERHRE 20150701 3

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 e ...[more]

PMID: 26297747

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Project description:Precision medicine (PM) programs typically use broad consent. This approach requires maintenance of the social license and public trust. The ultimate success of PM programs will thus likely be contingent upon understanding public expectations about data sharing and establishing appropriate governance structures. There is a lack of data on public attitudes towards PM in Asia. The aim of the research was to measure the priorities and preferences of Singaporeans for sharing health-related data for PM. We used adaptive choice-based conjoint analysis (ACBC) with four attributes: uses, users, data sensitivity and consent. We recruited a representative sample of n = 1000 respondents for an in-person household survey. Of the 1000 respondents, 52% were female and majority were in the age range of 40-59 years (40%), followed by 21-39 years (33%) and 60 years and above (27%). A total of 64% were generally willing to share de-identified health data for IRB-approved research without re-consent for each study. Government agencies and public institutions were the most trusted users of data. The importance of the four attributes on respondents' willingness to share data were: users (39.5%), uses (28.5%), data sensitivity (19.5%), consent (12.6%). Most respondents found it acceptable for government agencies and hospitals to use de-identified data for health research with broad consent. Our sample was consistent with official government data on the target population with 52% being female and majority in the age range of 40-59 years (40%), followed by 21-39 years (33%) and 60 years and above (27%). While a significant body of prior research focuses on preferences for consent, our conjoint analysis found consent was the least important attribute for sharing data. Our findings suggest the social license for PM data sharing in Singapore currently supports linking health and genomic data, sharing with public institutions for health research and quality improvement; but does not support sharing with private health insurers or for private commercial use.

Dataset Information

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

Publications

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

Similar Datasets

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