Policy makers, regulators and researchers’ perspectives on genomics research and the capacity of the National Health Research Act of 2013 to regulate genomics research in Zambia

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dc.contributor.authorMweemba, Oliver
dc.contributor.authorMusuku, John
dc.contributor.authorMatenga, Tulani Francis L.
dc.contributor.authorParker, Michael
dc.contributor.authorRutakumwa, Rwamahe
dc.contributor.authorSeeley, Janet
dc.contributor.authorSimanga, Twambo
dc.contributor.authorTindana, Paulina
dc.contributor.authorVries, Jantina de
dc.date.accessioned2022-03-18T19:34:52Z
dc.date.available2022-03-18T19:34:52Z
dc.date.issued2020
dc.description.abstractHealth research in sub-Saharan Africa takes place against a lengthy history of exploitation and unfair collaboration. This has involved the export of samples and data from the continent for the benefit of institutions and researchers elsewhere. In this paper, we report the perspectives of people involved in conducting genomics research in Zambia and the capacity of the Health Research Act (HRA) of 2013 in regulating genomics research. Methods: We approached 14 purposively selected stakeholders involved in the development or implementation of the HRA in Zambia for in-depth interviews. These were members of research ethics committees, genomics researchers, Ministry of Health policy makers and institutional lawyers. Results: Participants reported that there are benefits in genomics research for Zambia such as diagnosing and treatment of diseases. Participants also expressed concerns, most of which were ethical in nature. Prominent concerns were on consent. Participants’ main concern was the possible misuse of samples in the future. These concerns resonated with the HRA, which prohibits the use of broad consent for the collection of samples and data for future unspecified research. The implications of this is that Zambians may not participate in any kind of health research for which the storage, sharing and reuse of data or samples is envisaged. The restrictive nature of HRA means that genomics research may be excluded from future health research collaborations, thus isolating the country from potentially beneficial health research. Some policy makers also worried the samples and data that comes from such research may be difficult to access by local scientists. Conclusion: In this article, we describe the views of Zambian policymakers on genomics research and the capacity of HRA in regulating genomics research. Our findings are relevant for the Zambian audience, and other African countries that are aiming to regulate health research, especially genomics research.en_US
dc.identifier.citationMweemba O, Musuku J, Matenga TFL et al. Policy makers, regulators and researchers’ perspectives on genomics research and the capacity of the National Health Research Act of 2013 to regulate genomics research in Zambia [version 1; peer review: 2 approved with reservations] AAS Open Research 2020, 3:32 https://doi.org/10.12688/aasopenres.13092.1en_US
dc.identifier.urihttps://doi.org/10.12688/aasopenres.13092.1
dc.identifier.urihttps://nru.uncst.go.ug/xmlui/handle/123456789/2825
dc.language.isoenen_US
dc.publisherAAS Open Researchen_US
dc.subjectGenomics researchen_US
dc.subjectHealth Research Act 2013en_US
dc.subjectBroad consenten_US
dc.subjectSample sharingen_US
dc.subjectData sharingen_US
dc.subjectBio-bankingen_US
dc.titlePolicy makers, regulators and researchers’ perspectives on genomics research and the capacity of the National Health Research Act of 2013 to regulate genomics research in Zambiaen_US
dc.typeArticleen_US
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