A review of international and UK-based ethical guidelines for researchers conducting nontherapeutic genetic studies in developing countries

Abstract

Initiation and implementation of nontherapeutic genetic research projects, sponsored by developed countries and conducted in developing countries, requires careful consideration and awareness of procedures that ensure ethical research. This article reviews, and discusses controversies surrounding, the ethical principles established internationally and recommended by institutions in the UK for designing and implementing nontherapeutic genetic research studies. Before project commencement, the researcher should submit proposals to appropriate ethics committees and, wherever possible, seek guidance from experienced researchers. The researcher must also be aware of his/her responsibilities when conducting research with human participants. Responsibilities include respecting autonomy, privacy and confidentiality of participants, respecting social and cultural differences, providing appropriate information to participants, obtaining informed consent and offering appropriate compensation for participation. Finally, researchers involved in human genetics studies must also consider specific issues and public concerns when collecting biological samples. This includes using anonymised samples, considering future use of samples and ensuring confidentiality of results. © 2006 Nature Publishing Group. All rights reserved.