A critical review of racial/ethnic variables in osteoporosis and bone density research.

UNLABELLED: Racial and ethnic variables are common in research on variation in bone density. This literature review describes some of the common flaws associated with the use of these variables and provides some suggestions for how bone density research may be able to better document and address skeletal health disparities. INTRODUCTION: Racial/ethnic differences in bone density have been commonly documented in the research literature. While effective identification of the specific factors underlying these trends might go a long way in informing treatment and screening for osteoporosis, this would require careful consideration of exactly what these variables are capturing. However, the basis and implications of what racial/ethnic variables represent have not carefully been examined in bone density research. METHODS: For this paper, we systematically reviewed 55 articles that included bone density and race/ethnicity as key variables. Our analysis reveals that racial/ethnic terminology in these articles is highly variable, and discussion of how race/ethnicity is determined is often vague and idiosyncratic. Racial/ethnic variables are being used for a wide range of analytical purposes in statistical tests, which may not be appropriate for such a complex and poorly defined variable. RESULTS: Many articles attribute racial/ethnic differences in bone mass/bone density to genetic causes, although few studies actually examine genetic data. CONCLUSION: This analysis indicates that more rigorous examination of what race/ethnicity actually captures, more careful definitions of group labels and the procedures for assigning them, and attention to the limitations of how such variables can reliably be used in data analyses is needed to help address the problems and issues outlined in this review.

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.