Ethical Data Release in Genome-Wide Association Studies in Developing Countries

Abstract

Developing countries carry a disproportionate share of the global disease burden [1]. One main obstacle to developing better tools for disease prevention—such as vaccines against malaria, tuberculosis, and HIV—is our limited understanding of the underlying mechanisms of disease and protective immunity. Genome-wide association (GWA) studies provide a powerful way of getting at this problem by identifying genetic variants determining resistance or susceptibility to common diseases [2–4]. GWA studies to date have mostly focused on populations of rich countries, and there is a case for greater scientific investment in GWA studies relevant to the needs of developing countries. GWA studies in developing countries raise a range of ethical issues. One aspect is the need to protect the rights of the individuals and communities who are the subjects of the research, e.g., by developing appropriate processes for valid consent [5]. Another aspect is to ensure that researchers and institutions in developing countries, who generate samples and data for GWA studies, are not put at a scientific disadvantage when they participate in the large collaborative networks that are needed to undertake this type of research [6]. We do not attempt to deal with here the full spectrum of ethical issues raised by GWA studies in developing countries, but focus specifically on the problem of releasing data to the broader scientific community