Genes, race and research ethics: who’s minding the store?

BACKGROUND: The search for genetic variants between racial/ethnic groups to explain differential disease susceptibility and drug response has provoked sharp criticisms, challenging the appropriateness of using race/ethnicity as a variable in genetics research, because such categories are social constructs and not biological classifications. OBJECTIVES: To gain insight into how a group of genetic scientists conceptualise and use racial/ethnic variables in their work and their strategies for managing the ethical issues and consequences of this practice. METHODS: In-depth semi-structured interviews were conducted with a purposive sample of 30 genetic researchers who use racial/ethnic variables in their research. Standard qualitative methods of content analysis were used. RESULTS: Most of the genetic researchers viewed racial/ethnic variables as arbitrary and very poorly defined, and in turn as scientifically inadequate. However, most defended their use, describing them as useful proxy variables on a road to "imminent medical progress". None had developed overt strategies for addressing these inadequacies, with many instead asserting that science will inevitably correct itself and saying that meanwhile researchers should "be careful" in the language chosen for reporting findings. CONCLUSIONS: While the legitimacy and consequences of using racial/ethnic variables in genetics research has been widely criticised, ethical oversight is left to genetic researchers themselves. Given the general vagueness and imprecision we found amongst these researchers regarding their use of these variables, they do not seem well equipped for such an undertaking. It would seem imperative that research ethicist move forward to develop specific policies and practices to assure the scientific integrity of genetic research on biological differences between population groups.