This research, which is funded by a Wellcome Trust Studentship, investigates the ethical issues associated with the collection, release and publication of data on the ethnic background of research participants. Ethnicity is a crucial variable that needs to be collected and used in genomic association studies, but the inclusion and use of this variable poses important ethical challenges, most importantly relating to potential stigmatization of population groups. To date no comprehensive social science analysis has been performed that provides an accurate description of the ethical issues in the collection, release and publication of ethnic information in genomic association studies. The MalariaGEN ethics team aims to contribute significantly to the development of good research practice by:

·        investigating the nature of the ethical issues concerned in the release of ethnic data in the MalariaGEN project;

·        exploring stakeholder perspectives on the collection, release, publication and use of ethnic information in genomic epidemiology research;

·        developing guidelines for the ethical release of this data to the benefit of the scientific community whilst protecting research participant communities.

The project will use qualitative interviews and organised discussions around specific themes to investigate these issues. It will use this empirical data to inform the development of best practice guidelines, with the objective of assisting the consortium in dealing with ethnicity data responsibly. This research is being carried out by Jantina de Vries and is supervised by Professor Michael Parker and Professor Ray Fitzpatrick.