Ethics and Governance
Network policies
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:
- 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.
Some of the ethical issues arising during MalariaGEN research can be addressed through appropriate consultation and development of policy documents, or through ethics support and training. There are also some areas that require empirical 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 ethnic data
For further information, please see these key links: