Using ethnic data in genomic research

One of the ethical challenges that has arisen in the course of the MalariaGEN research concerns appropriate ways of dealing with and presenting ethnic data and research results that are specific to ethnic groups. MalariaGEN uses samples from a multitude of populations across the malaria-endemic world. It also uses population information, or 'ethnic data', to match cases (children with severe malaria) and controls (healthy children). When comparing genetic data from cases and controls, it is important to be sure that the results obtained are really due to different susceptibilities to malaria, and not due to other differences between the cases and controls. It is important to compare children who are as similar as possible to each other, except for their illness. A person's population group is an important factor, so it is necessary to match children from the same population group.

However, inclusion of ethnic data in the analysis means that any research results will also be related to each ethnic group - for instance, the data from The Gambia can be divided into data for the various ethnic groups that were sampled in that country.

In the past, linkage of population groups to scientific data has generated concerns about possible stigmas that this could raise. Although these concerns may not be directly relevant for the work that MalariaGEN does on malaria, which is not a stigmatising condition, it is important to ensure that research results are presented and data shared in a way that does not create any negative effects for the groups from which the samples in the research were obtained.

Currently, only very limited guidance is available on how to use, publish and share ethnic data in genomic research in an ethical and responsible way. In an attempt to address this, Jantina de Vries is currently engaging in a 3 year research project that attempts to investigate stakeholder perspectives on the ethical challenges of collecting, using, publishing or releasing ethnic data in genomic research. For this, the team is conducting qualitative interviews with researchers, fieldworkers, ethics committee members and representatives of the funding bodies in Africa, Europe and the USA.

This project is currently in its second year and funding has been obtained from the Wellcome Trust (Medical Humanities).