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
Matenga, Tulani Francis L.
Vries, Jantina de
MetadataShow full item record
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 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.
- Medical and Health Sciences 
Showing items related by title, author, creator and subject.
The Africa Ethics Working Group (AEWG): a model of collaboration for psychiatric genomic research in Africa Kamuya, Dorcas; Bitta, Mary A.; Addissie, Adamu; Naanyu, Violet; Palk, Andrea; Mwaka, Erisa; Kamaara, Eunice; Tadele, Getnet; Teka Wolde, Telahun; Nakigudde, Janet; Manku, Kiran; Musesengwa, Rosemary; Singh, Ilina (Wellcome Open Research, 2021)The Africa Ethics Working Group (AEWG) is a South-South-North collaboration of bioethics and mental health researchers from sub- Saharan Africa, working to tackle emerging ethical challenges in global mental health ...
The Medical Research Council (UK)/Uganda Virus Research Institute Uganda Research Unit on AIDS – ‘25 years of research through partnerships Kaleebu, Pontiano; Kamali, A.; Seeley, J.; Elliott, A. M.; Katongole-Mbidde, E. (Tropical Medicine & International Health, 2015)For the past 25 years, the Medical Research Council/Uganda Virus Research Institute UgandaResearch Unit on AIDS has conducted research on HIV-1, coinfections and, more recently, on non-communicable diseases. Working with ...
Translational Research in Uganda: Linking Basic Science to Bedside Medicine in a Resource Limited Setting Kwizera, Richard; Mande, Emmanuel; Omali, Denis; Okurut, Samuel; Nabweyambo, Sheila; Nabatanzi, Rose; Nakanjako, Damalie; Meya, David B. (Journal of translational medicine, 2021)Translational research is a process of applying knowledge from basic biology and clinical trials to techniques and tools that address critical medical needs. Translational research is less explored in the Ugandan health ...