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“You Cannot Collect Data Using Your Own Resources And Put It On Open Access”: Perspectives From Africa About Public Health Data-Sharing

Anane-Sarpong, Evelyn and Wangmo, Tenzin and Ward, Claire and Sankoh, Osman and Tanner, Marcel and Elger, Bernice Simone. (2017) “You Cannot Collect Data Using Your Own Resources And Put It On Open Access”: Perspectives From Africa About Public Health Data-Sharing. Developing world bioethics. pp. 1-12.

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Official URL: http://edoc.unibas.ch/58138/

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Abstract

Data-sharing is a desired default in the field of public health and a source of much ethical deliberation. Sharing data potentially contributes the largest, most efficient source of scientific data, but is fraught with contextual challenges which make stakeholders, particularly those in under-resourced contexts hesitant or slow to share. Relatively little empirical research has engaged stakeholders in discussing the issue. This study sought to explore relevant experiences, contextual, and subjective explanations around the topic to provide a rich and detailed presentation of what it means to different stakeholders and contexts to share data and how that can guide practice and ethical guidance. A qualitative design involving interviews was undertaken with professionals working in public health institutions endowed with data (HDSS), ethics committees, and advisory agencies which help shape health research in Africa. A descriptive form of thematic analysis was used to summarize results into six key themes: (1) The role of HDSSs in research using public health data and data-sharing; (2) Ownership and funding are critical factors influencing data-sharing; (3) Other factors discourage data-sharing; (4) Promoting and sustaining data-sharing; (5) Ethical guidance structures; and (6) Establishing effective guidance. The themes reveal factors regarding the willingness or not to share and an intricate ethical system that current discourse could reflect. Many of the concerns resonate with the literature, but a whole other gamut of people and process issues; commitments, investments, careers, and the right ethical guidance are needed to realize a sustainable goal of reaching ‘share’ as a default.
Faculties and Departments:08 Cross-disciplinary Subjects > Ethik > Institut für Bio- und Medizinethik > Bio- und Medizinethik (Elger)
03 Faculty of Medicine > Departement Public Health > Ethik in der Medizin > Bio- und Medizinethik (Elger)
UniBasel Contributors:Wangmo, Tenzin and Elger, Bernice Simone and Ward, Claire Leonie and Anane-Sarpong, Evelyn and Tanner, Marcel
Item Type:Article, refereed
Article Subtype:Research Article
Publisher:Blackwell
ISSN:1471-8731
e-ISSN:1471-8847
Note:Publication type according to Uni Basel Research Database: Journal article
Identification Number:
Last Modified:01 Nov 2018 16:07
Deposited On:01 Nov 2018 16:07

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