MRC units in The Gambia and Uganda carry out vital research into diseases of major impact in the developing world, underpinned by work in our units and universities in the UK. The MRC produces good practice guidance for researchers working in this area, and also works with partners in Africa and Europe on solutions to ethical questions that can arise when conducting research in developing countries. In addition, we are working with research organisations in China to develop a mutual understanding of ethics policies and practices in China and the UK.
The Global Forum on Bioethics in Research
This informal partnership was founded in 1999 by a number of organisations with a shared interest in the ethical conduct of research involving people in developing countries. The Global Forum on Bioethics in Research meets annually to debate a chosen topic, with partners contributing funds to enable participants from developing countries to attend.
The MRC was one of the forum’s founding partners, along with the Fogarty International Center and other members of the USA National Institutes of Health, the World Health Organization, the South African MRC, and the Pan American Health Organization.
Over the years many other organisations have joined, including the Wellcome Trust, the Rockefeller Foundation, the Institut National de la Santé et de la Recherche Médicale (France), the European Commission, the European and Developing Countries Clinical Trials Partnership, the Council on Health Research for Development, and the Aga Khan University.
In its annual meetings since 1999, the forum has discussed many of the key issues in international collaborative research: the difficulties in creating ethical guidelines and review processes in developing countries; the standard of care to be provided during clinical trials; traditional medicines; genomics and global health; benefit sharing and intellectual property; and culture and informed consent.
Networking for Ethics on Biomedical Research in Africa (NEBRA)
NEBRA is a collaboration of West African countries who want to improve their ethics review procedures to fulfil international requirements and so attract more clinical research addressing their own health priorities. In 2004 they approached the European Commission for support - along with the MRC, the World Health Organization, the University Eberhard Karls in Tübingen, Germany, and project co-ordinators the French Institut National de la Santé et de la Recherche Médicale – and were funded under the Commission’s Science and Society programme.
NEBRA involves four co-ordinating countries – Benin, The Gambia, Gabon and Mali, and 11 participating countries – Burkina Faso, Cameroon, Central African Republic, The Congo, Côte d’Ivoire, Republic of the Congo, Ghana, Guinea, Nigeria, Senegal and Togo. It aims to:
- Draw up an inventory of the people and resources involved in research ethics review in West Africa.
- Acquire a real understanding of their needs and gaps in the ethics review infrastructure.
- Increase understanding of the particular ethical issues raised by research in the area.
- Develop a strategy for improving ethics review capacity in West Africa.
- Strengthen networking to ensure the dissemination of results and continued development of NEBRA.
In the first stage of the initiative, each country has used interviews and a questionnaire survey to identify its existing ethics review capacity and needs. African and European experts with a particular interest in the social science issues raised and trained African interviewers worked with NEBRA on developing the questionnaire, which was piloted in The Gambia and Mali in 2005.
MRC guidance for researchers
Ethical guidelines on key issues for researchers carrying out studies in developing countries, with a selection of essential key sources for further reading.
The MRC developed this advice after being approached by researchers in The Gambia and Uganda. It addresses standards of care and ethical values in research on AIDS in developing countries, and also covers clinical management of patients who develop AIDS during the course of research programmes investigating other diseases.
The capacity for medical research in China is developing rapidly. It is crucial that any such collaborations between the UK and China work to agreed the appropriate standards of research ethics and governance.