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. (shrink)

In the United States, health disparities have been framed by categories of race. Racial health disparities have been documented for cardiovascular disease, cancer, diabetes, HIV/AIDS, and numerous other diseases and measures of health status. Although such disparities can be read as symptoms of disparities in healthcare access, pervasive social and economic inequities, and discrimination, some have suggested that the disparities might be due, at least in part, to biological differences based on race. Or, to be more precise, if race itself (...) has no determined biological meaning, race may nonetheless be a proxy that collects a group of individuals who share certain physiological or genotypic features that affect health. (shrink)

While the concepts of race and ethnicity have been abused historically, they are potentially invaluable in epidemiology and public health. Epidemiology relies upon variables that help differentiate populations by health status, thereby refining public health and health care policy, and offering insights for medical science. Race and ethnicity are powerful tools for doing this. The prerequisite for their responsible use is a society committed to reducing inequalities and inequities in health status. When this condition is met, it is irresponsible not (...) to utilize these concepts. (shrink)

Before any citizen enters the role of scientist, medical practitioner, lawyer, epidemiologist, and so on, each and all grow up in a society in which the categories of human differentiation are folk categories that organize perceptions, relations, and behavior. That was true during slavery, during Reconstruction, the eugenics period, the two World Wars, and is no less true today. While every period understandably claims to transcend those categories, medicine, law, and science are profoundly and demonstrably influenced by the embedded folk (...) notions of race and ethnicity. (shrink)

Bioethics' interdisciplinary base -- Patient-centered care -- Evidence-based medicine and pay-for-performance -- Community dialogue -- Overview : bioethics, power, and learning to see -- Cross-cultural concerns -- Race and health disparities -- Disabilities -- Environmental and global issues -- New technologies -- Conclusion.

Bioethics' traditional focus on clinical relationships and exotic technologies has led the field away from population health, health disparities, and issues of justice. The result: a myopic view that misses the institutional context in which clinical relationships operate and can overlook factors that affect health more broadly than do exotic technologies. A broader bioethics agenda would take up unresolved questions about the distribution of health and the development of fair policies that affect health distribution.