Research Article: Ethical Data Release in Genome-Wide Association Studies in Developing Countries

Date Published: November 24, 2009

Publisher: Public Library of Science

Author(s): Michael Parker, Susan J. Bull, Jantina de Vries, Tsiri Agbenyega, Ogobara K. Doumbo, Dominic P. Kwiatkowski

Abstract: Michael Parker and colleagues discuss the ethical issues associated with data release from genome-wide association studies in developing countries.

Partial Text: 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.

Although MalariaGEN was founded with open access in mind [6], it was clear that the development of an effective, appropriate approach to GWA data release required widespread consultation across the network and with external stakeholders (see Figure 1). In what follows, we outline some of the key issues arising during this process and how these were addressed.

The purpose of the MalariaGEN data-release policy is to promote the scientific use and the social value of its data. There is a need to find effective mechanisms to communicate the key findings of the research, and how the released data have been used by the scientific community, to participating communities and to local research ethics committees. There is also a need to find effective and appropriate ways of conveying the purpose of the research and exploring its social and cultural implications if local communities are to be able to participate effectively in debates about the release of GWA data. This need is of particular importance in relation to data on ethnicity, and how individual ethnic groups are to be identified and labelled. Genetic researchers need to work with social scientists and with research ethics committees to understand how such issues are perceived by local communities, and to ensure that these views are respected in the released data.



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