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The abundance of South African clinical and public health research data has the potential to unlock important and valuable future advances in biomedical science. Amid increasing calls for more effective sharing of individual-level data, commitment to promote access to research data is evident within South Africa's public research sector, but national guidance and regulation are absent. This qualitative study examined the perceptions, experiences and concerns of 32 research stakeholders about data-sharing practices. There was consensus about the utility of data sharing in publicly funded health research. However, disparate views emerged about the possible harms and benefits of sharing data and how these should be weighed. The relative dearth of policies governing data-sharing practices needs to be addressed and a framework of support developed that incentivizes data-sharing practices for researchers that are both ethical and effective.

Original publication

DOI

10.1177/1556264615592386

Type

Journal article

Journal

Journal of empirical research on human research ethics : jerhre

Publication Date

07/2015

Volume

10

Pages

290 - 301

Addresses

University of KwaZulu-Natal, Pietermaritzburg, South Africa.

Keywords

Humans, Data Collection, Attitude, Information Dissemination, Cooperative Behavior, Public Health, Residence Characteristics, Biomedical Research, Qualitative Research, Developing Countries, Social Responsibility, Adult, Aged, Middle Aged, Research Personnel, South Africa, Female, Male, Young Adult, Policy