Ethical issues in human genomics research in developing countries
1 The Ethox Centre, Department of Public Health and Primary Care, University of Oxford, Old Road Campus, Headington, Oxford, OX3 7LF, UK
2 The Wellcome Trust Centre for Human Genetics, University of Oxford, Roosevelt Drive, Oxford, OX3 7BN, UK
3 Malaria Research and Training Centre, Faculty of Medicine, Pharmacy and Odonto-Stomatology, University of Bamako, PO Box: 1805 Point G, Bamako, Mali
4 Institute for Endemic Diseases, University of Khartoum, Medical Campus, Qasser Street, PO Box 102 Sudan
5 Institut Pasteur, Unité d'Immunologie Moléculaire des Parasites, 28 Rue du Dr Roux, 75724 Paris, Cedex 15, France
6 Wellcome Trust Sanger Institute, Hinxton, Cambridge, CB10 1SA, UK
BMC Medical Ethics 2011, 12:5 doi:10.1186/1472-6939-12-5Published: 18 March 2011
Genome-wide association studies (GWAS) provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania.
We explore ethical issues in three key areas: protecting the interests of research participants, regulation of international collaborative genomics research and protecting the interests of scientists in low income countries. With regard to participants, important challenges are raised about community consultation and consent. Genomics research raises ethical and governance issues about sample export and ownership, about the use of archived samples and about the complexity of reviewing such large international projects. In the context of protecting the interests of researchers in low income countries, we discuss aspects of data sharing and capacity building that need to be considered for sustainable and mutually beneficial collaborations.
Many ethical issues are raised when genomics research is conducted on populations that are characterised by lower average income and literacy levels, such as the populations included in MalariaGEN. It is important that such issues are appropriately addressed in such research. Our experience suggests that the ethical issues in genomics research can best be identified, analysed and addressed where ethics is embedded in the design and implementation of such research projects.