Developing a robust and supportive ethical and governance framework for genomic research in Africa – an exploratory study in Ghana, Uganda and Zambia
The H3Africa initiative has the potential to lead to important genomic research in Africa led by African scientists. Such research offers important benefits but also presents important ethical challenges that will need to be identified and addressed by researchers and by research ethics committees. In many countries in Africa genomic research with human subjects is a relatively new area of enquiry. For some, including many ethics committee members, health professionals, frontline research staff, and community representatives, the idea of genomic research raises fears about what this research may be for and what the implications of participation might be, particularly when funded by organisations based outside of the continent. Perhaps unsurprisingly, in many countries the response of ethical review bodies to this emerging area of research has been hesitant, as members deliberate over what may or may not be allowed.
This qualitative study, which is being conducted in Ghana, Uganda and Zambia, will include semi-structured interviews with key stakeholders including policy makers at the ministry of health, selected members of research ethics committees, research teams, local leaders and community representatives, research participants, and non-participants. The study aims to address the following questions:
What are the understandings of genomic research in general and the H3Africa project in particular held by ethics committee members, different members of research teams and research participants?
How do staff administering the consent documentation understand and interpret the concepts they explain to participants (how much do they explain, how do they explain and what do they consider to be the most important areas in the informed consent process)?
What do local leaders, non-participants, people who refused to participate etc., understand about the project ?
As far as is possible, without breaking the confidentiality of ethics committee procedures, what areas were of particular concern during the process of reviewing H3A proposals and any subsequent matters that may have arisen as the projects progressed?
What do stakeholders consider to be the core elements of ‘good practice’ in genomics research in Africa?
Professor Mike Parker works in collaboration with our Research Associate Professor Janet Seeley on this research project.