Using ethnicity data in genomic research
Our human consortial projects are generating data on samples collected from many populations – people with different ethnic backgrounds, living in different geographical locations. Determining appropriate ways to present data and research findings specific to ethnic groups is an important ethical challenge.
When comparing genetic data, population information or 'ethnic data' is used to match cases (children with severe malaria) and controls (healthy children). This is done because it's important to compare children who are as similar as possible to each other, except for their illness.
Matching cases and controls from the same population or ethnic group helps to ensure the results obtained are really due to different susceptibilities to malaria, and not due to other differences between the cases and controls. However, including ethnic data in the scientific analysis means that any research results will also be related to each ethnic group.
In the past, linking scientific data and findings to particular ethnic groups or populations has raised concerns about possible stigma or discrimination. Although these concerns may not be directly relevant for our research into malaria, we want to ensure our results and data are shared in a way that does not create negative effects for the people from which samples were collected.
Our ethics team engaged in a three year research project to investigate stakeholder perspectives on the ethical challenges of collecting, using, publishing or releasing ethnic data in genomic research. As part of this qualitative study, our team conducted qualitative interviews with researchers, fieldworkers, ethics committee members and representatives of the funding bodies in Africa, Europe and the USA.
- De Vries J, Bull SJ, Doumbo OK, Ibrahim M, et al. Ethical issues in human genomics research in developing countries. BMC Medical Ethics. 2011: 12(5). doi: 10.1186/1472-6939-12-5.