Heterogeneity of risk within racial groups, a challenge for public health programs

Abstract

Targeting high-risk populations for public health interventions is a classic tool of public health promotion programs. This practice becomes thornier when racial groups are identified as the at-risk populations. I present the particular ethical and epistemic challenges that arise when there are low-risk subpopulations within racial groups that have been identified as high-risk for a particular health concern. I focus on two examples. The black immigrant population does not have the same hypertension risk as US-born African Americans. Similarly, Finnish descendants have a far lower rate of cystic fibrosis than other Caucasians. In both cases the exceptional nature of these subpopulations has been largely ignored by the designers of important public health efforts, including the recent US government dietary recommendations. I argue that amending the publicly-disseminated risk information to acknowledge these exceptions would be desirable for several reasons. First, recognizing low-risk subpopulations would allow more efficient use of limited resources. Communicating this valuable information to the subpopulations would also promote truth-telling. Finally, presenting a more nuanced empirically-supported representation of which groups are at known risk of diseases (not focusing on mere racial categories) would combat harmful biological race essentialist views held by the public.

Introduction

Public health interventions are often targeted to identifiable high-risk populations. This raises philosophical issues such as what it means for a population to be at risk and what ethical considerations should guide programs. These challenges become considerably more complex when the target populations are racial groups. As Troy Duster lays out in a 2006 paper on the use of race in medicine:

The unenviable task has been to try to walk a tightrope—to figure out a way to effectively deploy in research the concept of race (or population groups designated by race) without endowing “race” with a false sense of genetic essentialism (Duster, 2006, p. 488).

This danger is a quite real one, as misperceptions of the biological basis of race abound in the United States. More importantly, psychological data suggests, “[the] belief that social categories have an underlying nature/natural foundation” is one central basis for the formation and endorsement of stereotypes and prejudice” (Keller, 2005, pp. 686, 699). On the other hand, “this implies that one possible way of combating stereotyping and prejudice is to challenge the belief in genetic determinism and biological essentialism” (Keller, 2005, p. 699). The danger of promoting race essentialism (the view that racial categories demarcate deep intrinsic similarities among members of a race and corresponding differences between members of different races) does not automatically preclude the public application of race categories in medicine – Nancy Krieger has effectively argued why entirely ignoring race would “preclud[e] possibilities for monitoring progress and setbacks in reducing” “racial/ethnic inequalities” (2000, p. 213) – but that danger should be a guiding ethical consideration during deliberations about such medical uses.

I will show how information about racial groups' disease risks has been mishandled in two cases and make recommendations for ameliorating those missteps. In both cases, the designers of public health efforts have downplayed data that complicates their broad statements about racial groups being at elevated risk for particular diseases. I will focus on the black immigrant exception to the high rates of hypertension among African Americans and the Finnish exception to the high rates of cystic fibrosis among Caucasians. In these two cases there is ample data to support more nuanced (yet still simple and practical) characterizations of the at-risk populations—US-born African Americans are at elevated risk of hypertension and non-Finnish Caucasians are at elevated risk of cystic fibrosis. Yet, the unmodified racial categories continue to be used instead. This creates the unique situation in which low-risk subpopulations have had their interests marginalized during the propagation of broad claims about race-wide disease risks. Hence, we have two distinct problems that overlap in practice: the problem of ignoring low-risk islands within seas of high risk (so to speak) and the problem of privileging mere race when delineating which populations have public health risks. Together, the two problems combine to impede the dissemination of more nuanced data about heterogeneity of risk within racial groups.

I will argue that using available data to present more nuanced/specific representations of the relevant at-risk populations, beyond statements about racial groups broadly, would yield substantial benefits and also mitigate some of the harms associated with using race in medicine. Further nuance would preempt public overestimates of the biomedical significance of race, better serve the interests of the low-risk Finnish-descended and black immigrant subpopulations, improve the efficiency of public health resource usage (e.g. funds for testing people for recessive cystic fibrosis mutations) and promote truth-telling—the race-level data now provided is technically true, but is misleading for the low-risk subpopulations unless accompanied by the more nuanced available information. While I focus on analyzing the two aforementioned cases, the analysis suggests that more attention to low-risk subpopulations is warranted and that the privileging of data at the level of broad racial categories is an important obstacle to pursuing more nuanced representations of the heterogeneity of risk within racial categories.