The Racial Disparity Politics of Biomedical Research: Disaggregating Categories into New Essentialisms
In a recent article for Nature Human Behaviour, economist and public policy advocate Rhonda Vonshay Sharpe makes a case against the continued use of the expansive and heterogeneous social category “women of colour” as a biomedical research classification.1 Sharpe begins her criticism by recounting the origins of the term in the Black Women’s Agenda platform presented before the 1977 National Women’s Conference.2 There, a group of scholars and activists garnered support for a minority rights resolution, which adopted this catch-all distinction to encompass all those non-white members of that era’s women’s movement.3 Rather than celebrating the moniker’s intended inclusivity, however, Sharpe posits that this terminological victory has been crudely imported into clinical research both to the detriment of sound scientific inquiry and the policymaking that flows from such research.
In her prescriptions for resolving this taxonomic issue, however, Sharpe advances a short-sighted plan for reforming clinical research and relevant state classifications of race and ethnicity. The problem, as she identifies it, lies in classifying “Asian, Black, Hispanic, Native American and multi-racial women as a homogeneous group despite their distinct differences.” Doing so “erases identity and ignores a wealth of information about the unique experience of each group of women.” Only in “disaggregating data by race,” she claims, can we avoid the distortions that emerge from collapsing all non-white women into a singular category. Subsequently, researchers can search for disparities between and among non-white groups as well as in relation to other race and gender-based ones. Sharpe also maintains the integrity of the biomedical and social category of “white women,” which, despite its own immense internal differentiations, remains an uninterrogated monolith. Lastly, Sharpe advocates for what she calls an intersectional approach to the U.S. Census, which would include population projections by race and ethnicity plus gender. The current design of census data collection, she argues, is poorly equipped to produce information on the trajectories of racial and ethnic demographics of women and, therefore, limits research and policy possibilities. For Sharpe, it appears that it is not the race-based aggregation of data in general with which she takes issue, but instead the particular aggregation at hand.
This perspective is in many ways representative of current modes of conceptualizing race and ethnicity in biomedical research, public policy, and the broader political culture. Even when older schemes of racial classification are seen as outdated and false, the proposed solutions wind up retaining the logic of racial aggregation, albeit at a level of abstraction slightly lower than the original. This process of disaggregation results in a sustained focus on a new set of aggregations, which bring with them all sorts of distorting effects for practice of biomedical research and patient care as well as interpretative and material obstacles for those attempting to combat our current condition of economic inequality.4
The resultant biomedical and political effect is a reinforced commitment to a certain form of racial thinking that imbues sets of human categories with a presumed social essence (i.e. an existence that is best explained with reference to racial categorizations). This impulse to aggregate too is intertwined with the study of racial health disparities and the creation of public policies targeted at their amelioration. This narrowed perspective tends to position measures of disparity as the indicator of inequality in public health despite (or as a proxy for) other circumstances of class, geography, or temporality. It is thus a tendency that both resorts to racial concepts to categorize social and political existence as well as conflates the foundations and conditions of inequality with those disparities that exist among constructed groups.
How could it be that such intentions to reckon with the troubles of sloppy racial reification will likely lead to the proliferation of even more research and policy based upon ill-defined categories? Moreover, what is it about the internal dynamics and politics surrounding biomedical research on racial health disparities that results in imbuing these categories with largely fictitious notions of biological heritage and ontology or, at the very least, some form of static and fixed socio-cultural essence?
One such snare can be found in the well-documented problems for research and patient care that attend the reliance on racial categories as proxy measures for numerous and complex patterns of social experience. Bioethics and legal scholar Dorothy Roberts, for instance, has examined the use of what she terms the “crude and convenient” proxy of race in the study and care of patients with chronic kidney disease (CKD).5 In making the (specious) observation that African Americans tend to have more muscle mass than those of other races, researchers purporting to promote “evidence-based” care have obscured other factors in research and treatment that can have negative effects for patient care. In assuming that all members of a demographic possess the same physiological quality, physicians testing for CKD may gather less accurate results than if they had not controlled for race in this fashion. In a related study of CKD from 2012, researchers explored the efficacy of race-based hypotheses in a multiethnic population in Brazil, which found no reason to adjust for race parameters in testing for the disease.6 In recognition of these findings and similar studies, organizations like the Chronic Kidney Disease Epidemiology Collaboration now caution researchers that more generalizable testing measures might be preferable to race-based ones.7
This paradigm can even pit factors like race and socioeconomic condition against one another, despite evidence from epidemiological studies demonstrating that the studies that do so often wrongfully attribute racial differences to biological features.8 These purported disconnects between race and socioeconomic status have been shown to be due to residual confounding–in other words, the products of conceptual or methodological error. Similarly, the race-as-proxy model fails to recognize the instances in which public health data clearly demonstrate that variables like quality of education and other structural features of political economy can be teased out from foggier, less precise racial ones.9
Beyond the laboratory, some medical practitioners and scholars have begun to alert their communities to the deleterious effects that an emphasis on racial categories and disparity measures are imposing upon medical training and patient care. According to a 2017 article in the American Medical Association’s AMA Journal of Ethics, medical students now frequently encounter what the authors describe as a “preclinical curriculum that merely documents racial health disparities (without explanation), offers presumptive explanations that are disproportionately biological, and deploys race uncritically as a biological or epidemiological risk factor.”10 These scholars cautioned that the dominant perspective clouds over structural causes of health inequality by directing attention to much-needed, yet relatively surface-level conversations about the prevalence of racial biases in healthcare. The reigning race-conscious biomedical paradigm thus has the effect of downplaying and displacing attention to other important determinants of health and illness including class, geography, education, and other relevant indicators.11 While one might counter that race or ethnic categories may have some pragmatic utility for researchers or practitioners as proxies for specific patterns of social experience, this defense elides grappling with the flaws and the blind spots that they have been shown to produce.12
Proponents of a continued reliance on racial categories in these research and policy endeavors point to the U.S. Census as an important means of more accurately collecting demographic data. The logic here is that problems do not arise from the reification of historically-contingent racialized social categories into biomedical ones, but rather that they stem from inadequacies in data collection. Those familiar with its history, however, understand that the Census operates at as much as a prescriptive register as it does a descriptive one.13 The categories the state employs to collect data are reflections of dominant social and political imperatives and are informed by reigning ideological currents.
As one group biologists, anthropologists, and bioethics scholars have explained, Census racial category data and other “state-sanctioned but ill-defined categories of race” have been imported into biomedical research in ways that tend to reinforce the very arbitrarily-drawn boundaries around groups, which population genetics and similar research paradigms have worked to undermine.14 While this Census-based reform surely has offered the federal government a more accurate picture of the country’s racial composition (particularly how individuals personally identify themselves according to a racial schema), it has also enabled the production of new, more diverse data sets to be run through what can be the essentializing mill of biomedical research.15 In this light, a Census solution would likely do very little to guard against such reifying tendencies.
Accordingly, treating race and ethnicity as a collection of internally-coherent and homogenous social categories—in contrast to a simple racial dichotomy—stands also to translate into biomedical research and healthcare more generally in ways that may actually exacerbate the problem of biological reification rather than remedy it.16 This is in large part due to the bioessentialized character these categories can take on when introduced into the networks and institutions involved in the production of such research. Sociologist Steven Epstein’s work on “recruitmentology,” which he defines as “an empirical body of studies scientifically evaluating the efficacy of various social, cultural, psychological, technological, and economic means of convincing people (especially members of ‘hard-to-recruit populations’) that they want to become, and remain, human subjects [i.e. passive bits of data]”–is illuminating on this front.17
Since the 1980s, identity-based advocacy coalitions have effectively pressured federal legislators, bureaucratic agencies, and medical researchers to expand their studies to include diverse human populations. This has taken the form of new commissions, task forces, and guidelines such as those developed within the Department of Health and Human Services to expand biomedical and behavioral research to include racial and gender minority groups in federally-funded studies.18 The resultant paradigm has thus come to incentivize—and for those like the National Institutes of Health (NIH) and the Food and Drug Administration (FDA), mandate— the collection of specific demographic data and the participation of a diversity of clinical subjects.19
There have surely been benefits to pivoting away from an overreliance on white male participants as was a previous trend in the collection of biomedical data (though this is in part an ahistorical oversimplification).20 In his book on what he termed the “inclusion-and-difference paradigm,” Epstein details how gender-based research in particular has benefited patients undergoing treatments such as hormone replacement therapy.21 But the structural incentives created to achieve diverse research populations have led to a shallow attention to difference among relatively abstract racially-defined categories. Though the differences that are measured in these studies are often merely mean averages that overlap racial groups (i.e. not confined to one category), they are frequently conveyed as categorical ones between racial groups. Current biomedical and public health terrains consist of such extant bioessentialist thinking that these groups are frequently instilled with some form of fundamental biological content, despite the intentions of reformers who object to the biological reification of racial types.22 It is the grants, policies, and laws that propel an overextended and endless search for difference at this level of abstraction, which tend to reinscribe some bio-ontological character.
The latest iteration of bioessentialist thinking has already had a widespread effect on scientific research, the manufacture and distribution of pharmaceuticals, and the creation of a new line of genetic consumer products. Public health scholar Jonathan Kahn, for example, exposed how the pharmaceutical industry has been able to profit from medically baseless, race-targeted medications that have resulted from this kind of race conscious approach to biomedical research.23 Kahn traces how a drug prescribed to patients with heart failure called BiDil traveled through FDA and NIH channels and their institutional policies on race-based research in its evolution as a treatment targeted specifically to black patients.24 Most importantly, just as the original patent on the drug was about to expire, the owners of BiDil were able to re-patent it as a race-based treatment using anything-but-definitive results of its supposed efficacy as a racially-customized pharmaceutical.
As is the case with the home genomic ancestry testing kit industry exemplified by 23andMe, the political economy of biological race reductionism thrives on this expanded universe of racial categories.25 As sociologist Jenny Reardon notes, a misleading progressive sheen is often afforded to these genomic developments (Reardon even refers to these as the instantiation of a “genomic liberalism”).26 For an example of this exercise in liberal posturing, University of California, San Francisco Chancellor and former president of Genetech Susan Desmond-Hellman championed the idea of a “new social contract” between genomic companies and their customers.27 This new bio-infused approach to race and ethnicity comes with all the sorts of narrow and ahistorical thinking that is typical of a liberal pluralistic conception of political society. It is one which reinforces ontological presumptions of intra-group characteristics, inter-group dynamics, and those groups’ relationships with structures and influences outside of their stable, fixed essences and communities.
This myopic perspective on race-based biomedical research and the public policy reforms with which it is associated cannot reach the foundations of the racial and gendered inequalities that its proponents seek to redress. Nor does it escape the network of academic institutions, non-profits, policymakers, and private companies that incentivize such representations of the relationship between racialized identity categories and biology. Not only is this approach ineffectual, it inches dangerously close to the visions of geneticist David Reich and others like him who advance a nominally liberal perspective on the supposed biological “reality” of racial types.28 Like advocates of a disaggregation approach to existing racial classifications, Reich and his ilk distance themselves from discredited biological reifications of race, yet they wind up favoring others they deem to be more scientifically valid and less politically suspect. While there are surely vast differences between the two camps, an uncritical support for the expansion of existent disparity research features a disturbing possibility of leading us through the backdoor into a newly-biologically reified world of race into which Reich is seemingly prepared to welcome us through the front.
One such immediate problem that this racialist thinking among liberal progressive reformers is that it appears to play into logic of the revanchist right-wing more than it thwarts them. A recent study by sociologists Aaron Panofsky and Joan Donovan found that white nationalists whose genetic ancestry tests revealed a less-than-pure white European heritage were simply able to invoke alternative criteria and boundaries of what they considered to be an adequately white identity.29 As science journalist and author of Superior: The Return of Race Science, Angela Saini, has noted, the logic behind such tests and the cultural and political conversations that we have about them play into the very reified notions of racial identities upon which reactionaries thrive.30
What then are the larger political consequences of these invigorated socio-cultural and biological variants of essentialism and the normative attachment to searching for disparities among them? Advocates of disparity research often warn that sloppily-collected clinical data translates into inadequate public health policies, and, as such, future studies and reforms should be oriented toward more robust collections of group-level data. Surely, it is important to more accurately amass health data and statistics that do not adhere to a vulgar racial dichotomy. However, pitfalls abound even the reforms pitched by the most genuine proponents that fail to consider the existing institutional context and political economy to which they are directed. As Adolph Reed Jr. and Merlin Chowkwanyun have shown, racial disparity research is not conducted in a political vacuum but rather it is produced by an array of public, non-profit, and entrepreneurial actors and organizations that together constitute a system that works to self-perpetuate the continued collection of disparity study upon disparity study, never getting too close to addressing the roots from which social inequalities sprout.31 These processes often reify disparities through simple racially-coded statistics at the expense of more holistic analyses of their embeddedness in a range of social relations.
The effect of this orientation to inequality can be seen, for example, in political mobilizations of data on health disparities concerning gender and racial categories and the broader visions for political equality which they inform.32 There are indeed valid empirical distinctions to be made in assessing the impact of public health crises like private equity’s recent foray into hospital acquisitions (which is often paired with subsequent hospital closures and the sell-off of their real estate).33 Hospital closures like the recent one at Hahnemann Hospital in Philadelphia, for instance, stand to harm nearby residents who are disproportionately low income and racial minorities.34
Yet this closure and ones like it impact a range of would-be patients across the country who often do not fit the racialized pattern of inequality that characterizes crises that occur in a major urban majority black city like Philadelphia. A recent report by the National Nurses United (NNU) on the practices of the private healthcare hospital firm Community Health Systems Inc. (CHS) delineates a myriad of ways that companies like CHS buy up hospitals—oftentimes in rural, largely white areas—only to quickly close down expensive OB/GYN clinics, leaving residents without vital services.35 CHS even shuts down and sells off the component parts of entire facilities when they fail to generate profit. Thus, a situation that appears to be overdetermined by race in one context is actually the particular social manifestation of a broader series of political economic factors of which no parsing of disparity measurements could come close to comprehending.
The NNU campaign against predatory healthcare tycoons and related fights against private equity’s recent attempts to financialize the industry are emblematic of a strategy and action that a class-based political organization like a labor union takes to combatting conditions of inequality.36 Take for example how the NNU has folded an attention to a diverse array of racial disparities into its campaigns for Medicare for All and against the parasitic and exploitative natures of the health insurance and pharmaceutical industries.37 In a 2015 statement on Black Lives Matter, the NNU noted that the most effective way to address racial disparities is through fights for a “[g]enuine, universal guaranteed healthcare based on a single standard of quality care for everyone” and an “end to austerity economic policies that disproportionately affect minority populations [which] could be achieved by a tax on Wall Street speculation that could raise hundreds of billions of dollars annually for living-wage jobs; increased funding for healthcare, housing, and education; and robust action to combat climate change and environmental devastation that also hit low-income and minority communities in higher percentages.”38
As for an example from the nonprofit and entrepreneurial-based disparity industry, take founder and president Rhonda Vonshay Sharpe’s Women’s Institute for Science, Equity, and Race (WISER). WISER is a 501c3 with a stated focus on “expand[ing] women-focused policy research to include the social, economic, cultural and political well-being of Asian, Black, Hispanic, Native American and Multiracial women.”39 The accompanying WISER Public Policy mission statement is littered with buzzwords and catchphrases about producing research that will further “access” and “equity” along disparity lines as well as place more women and racial minorities in science, technology, engineering and mathematics (STEM) fields. Though these may be laudable goals depending on the circumstance (and in this caveat lies another issue with this disaggregation-reaggregation tendency, which keeps the targets of policy intervention incredibly vague), they reveal that WISER’s work, like that of many other non-profit disparity research outfits, is confined mainly to the edges of a deeply inegalitarian society.40
This is all perhaps unsurprising given that the racial disparities healthcare frame has been a staple of bipartisan neoliberal renderings of inequality for quite some time now. As far back as 2002, President George W. Bush’s Secretary of Health and Human Services Tommy Thompson announced a goal “to eliminate disparities in health among all population groups by 2010.”41 The disparity orientation is also closely related to the one that leads liberals to split race and class into separate, distinct entities in ways that allow for the mobilization of rhetoric concerning racial inequalities to be used as a bludgeon against larger class-based programs.42 And even more broadly, this conception of inequality is especially impotent—even dangerous—in how it misrepresents the causes of the Trump phenomenon and the rise of a new right-wing politics in this country (and across the globe).43 The “white working class” myth and the vulgar binary that social scientists have come to construct between economic and status “anxieties” with hazy notions of prejudice wind up reducing social forces to a zero-sum game of racial antagonisms.44 It is difficult to see how the class character of contemporary racial health disparity politics could be made clearer.45
It is thus this persistent reliance on a logic of racial categorization (no matter how well-defined) and disparity that bears a sort of hegemonic influence over the ways in which we interpret and propose reforms to political society.46 One way to break free from this totalizing perspective is to champion public goods programs like single-payer healthcare reform and others like it as means of not only addressing disparities, but also of striking at the underlying material bases from which they emerge.47 The usual sort of disparity research is by contrast powerless when it comes to perceiving and resolving those structural conditions. In the U.S. in particular, a narrow focus on closing these gaps would not bring the general population up to many measures of equality in health that we see in countries with more robust social democratic programs.48 The road to equality points not so much in the direction of simply closing existing gaps among groups but rather in addressing the broader social inequalities created by capital’s predatory role in healthcare.
As for how to tackle these pathologies in biomedical practice and theorizing about race, future research would be better served by heeding the call of scholars of race and genetics to resist both new and old reifications of race and identity in our postgenomic era. It too would benefit from a return to the writings of an earlier generation of bioessentialism’s critics who promoted alternative theories that resisted the urge to taxonomize, identifying that latter propensity as owing its origins to the dynamics between a class society and the production of scientific knowledge.49 These geneticists, zoologists, evolutionary biologists, and neuropsychologists favored instead a dialectical view on the co-constitution of organism and environment, which has proven adept at breaking free from ossified, ahistorical models of human kinds.50 The pioneers of this mode of biological thinking include those like Richard Lewontin whose classic 1972 study “The Apportionment of Human Diversity” exposed the fallacy of racial reductionism by demonstrating that the genetic diversity within a particular racial aggregation was more significant than the genetic differences among reified socio-political racial types.51
More immediate reforms have been advanced by scholars of race and biology who have proposed a number of concrete reform measures. In a 2016 piece for Science, Michael Yudell, Dorothy Roberts, Rob DeSalle, Sarah Tishkoff lamented the tenacity that racial categorizations have had in the natural sciences, despite these longstanding calls against their use (or at least for a much more tempered use).52 One such prescription offered here was a requirement that journals justify the continued use of “classificatory terminology in studying human genetic diversity” as a means of forcing scientists themselves to clarify and rationalize their use of these categories. Though these types of proposals operate at a more procedural reformist level (rather than at that of the political economic and social influences which buttress racialist thought), they have an important role to play in curbing the use and expansion of this conceptual apparatus.
What we ultimately require is a kind of social constructionist approach to race that engages in a real reckoning with the processes of reification outlined here that simultaneously avoids being so glibly dismissive of scientific inquiry’s role in exploring features of human social life.53 Those self-styled radical, sometimes anarchistic, critiques of scientific logic that extend from the legacies, interpretations, and applications of works by Thomas Szasz, Paul Feyerabend, and Michel Foucault are no match for this formidable task.54 We would be better served by those like Kaushik Sunder Rajan who—similarly to Lewontin and his cohort—have combined critical perspectives on science with Marxist ones.55 Rajan’s work on biocapital, for instance, is notable for its integration of Foucauldian concepts like biopower with capital and commodity fetishism. Writing on what he has termed “genomic fetishism,” for example, Rajan elucidates that “the fetish…of the authority of scientific fact [is taken as] as something that is definitive and ultimate, and not the result of contingent, fragmentary, contested, and constantly revised processes of knowledge production; and of the authority of the gene as somehow standing in for, or representative of, entire organisms, populations, or species.”56
Rajan, Lewontin, Yudell, and their fellow travelers do not dismiss any and all biomedical research into social phenomena out of hand; instead, they caution against a hubristic attitude toward what it is that such projects could hope to reveal, especially when such studies begin from premises that reify categories that we know to be constructed and, thus, do not exist “in nature.”57 It follows then that a basic biological literacy is a necessary element of this corrective approach, if just to speak to and to convince the current universe of practitioners and researchers who have trained and matured in a context in which the notion that certain social categories have some biological essence comes as second nature. These and similarly-focused perspectives promise to more accurately attend to the intricacies of political and social life. They do so by encouraging the exploration of scientific truths while remaining vigilant about the distortions that underlie premises and conceptions about what may appear to be natural or commonsense on the surface, but which obfuscate complexities or rationalize historically-contingent phenomena lurking beneath.
While it is good practice to offer maps charting out the scholarly path forward, the more urgent immediate task is to expose these supposedly enlightened and egalitarian reforms to biomedical research and public policy for what they are: an internally-contradictory, politically-insufficient, scientifically-comprised, and ultimately reactionary58 set of discourses and policies that, in the process of displacing one reified worldview, replace it with another. The result is a schema that rationalizes a new arrangement of social relations, one that constitutes a fairly superficial degree of progress considering the expanding absolute (as well as intra-group) inequality with which its proponents often purport to be concerned. This latest iteration of racial aggregation and its associated disparitarian outlook are inadequately positioned to reckon with a regime in which the social determinants of health and life chances are conditioned by one’s position in a staggeringly unequal political economy of which highly-abstracted measures of racial disparity cannot begin to get us a full picture (and, again, are at times perversely weaponized to thwart broader, more substantive reforms). Those who seek both to comprehend and to eradicate existing social inequalities along with the material conditions that provide for their reproduction ought to pursue different routes to confronting inequality than those explicated here.59