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
Loading...
Date
2020
Journal Title
Journal ISSN
Volume Title
Publisher
AAS Open Research
Abstract
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.
Description
Keywords
Genomics research, Health Research Act 2013, Broad consent, Sample sharing, Data sharing, Bio-banking
Citation
Mweemba 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.13092.1