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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Abstract
Background Health 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 however, 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 are that Zambians may not participate in any kind of health research for which the storage, sharing and re-use 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 were also worried that 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.
Funding Information
  • Wellcome Trust (grant number 096527)

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