The Use of Ethnicity Data

Using ethnicity data in genomic research

One of the ethical challenges that has arisen in the course of MalariaGEN research concerns appropriate ways of dealing with and presenting data and research results that are specific to ethnic groups. MalariaGEN consortial research 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 stigma or discrimination that this could arise as the result of the use of ethnic data in genomics. Although these concerns may not be directly relevant for the work that MalariaGEN does on malaria 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 engaged in a 3 year research project that attempted to investigate stakeholder perspectives on the ethical challenges of collecting, using, publishing or releasing ethnic data in genomic research. For this, the team conducted qualitative interviews with researchers, fieldworkers, ethics committee members and representatives of the funding bodies in Africa, Europe and the USA.

This project has now been completed, and the MalariaGEN ethics team are in the process of writing publications on this topic. Jantina de Vries, the lead investigator on this project, has now moved to the University of Cape Town. She can be contacted on
jantina.devries@uct.ac.za.

Papers

De Vries J, Bull SJ, Doumbo OK, Ibrahim M, et al. 2011 Ethical issues in human genomics research in developing countries. BMC Medical Ethics 12(5). PMID 21418562