Human rights and ethics in genomic research: rethinking the model

Abstract

Current approaches to the ethical governance of human genetic sample collections for genomic research focus on the protection of sample donors' rights and interests. This reflects three historical influences upon genetic research: uses of genetic information to oppress individuals and communities, the history of regulation of medical research in general and ongoing debates regarding donors' interests in commercial applications of genetic research. Recent international statements and policy-making have applied human rights ideas to generate frameworks for the regulation of genomic research. This article explores the limits of such an approach, recommending a move away from a protection-oriented model of research ethics in genomics towards a development-oriented model. It is suggested that this would retain a human rights focus, but direct it in a more constructive, less risk-averse way.