Ethics and Governance
From the outset, MalariaGEN has recognised both the intrinsic importance of paying attention to the ethical aspects of its research activities and the fact that successful and appropriate genomic research in the context of collaboration between low and high income countries depends upon the identification and addressing of a range of important ethical issues such as those relating to data-sharing, the obtaining of consent and so on.
To assist it in this aspect of its work, MalariaGEN has from the start included a programme of ethics activities co-ordinated by the Ethox Centre at the University of Oxford. The role of the ethics programme has been to provide ethics support, training and advice, to support the development of policies on ethical issues, and to carry out research on ethical issues arising in the context of MalariaGEN.
The MalariaGEN ethics team includes Professor Michael Parker, Dr Susan Bull and Dr Angeliki Kerasidou. Dr Jantina de Vries was a member of the MalariaGEN ethics team until 2011.
Network policies for consortial projects
There are many practical and ethical considerations involved in sharing data across a global network comprising investigators and institutions in countries with great disparities in funding and infrastructure. This is particularly the case for human genetic data, where it is essential to preserve privacy and to safeguard the interests of the communities involved.
The MalariaGEN community is working to support best practice for recruitment of research participants, data management and data sharing. The following links provide information about specific areas of policy development relating to consortial projects:
- Data sharing with consortial projects
- Release of human genome-wide association data
- Obtaining informed consent
- De-linking and re-linking data
Please contact the ethics team for further information about our full range of policies.
Ethical issues arising during MalariaGEN research can often be addressed through appropriate consultation and development of policy documents, or through ethics support and training. However, there are some issues that require the carrying out of ethics research, and the MalariaGEN ethics team is currently working with partner institutions to develop a better understanding of the following topics:
- Seeking consent for genomic research in developing countries
- Ethical issues in research collaborations
- The use of ethnicity data
- Ethics capacity building
For further information, please see these key links: