Biomedicalization and the New Science of Race
In the 1990s–2000s, developments in genetic science and technology ushered in a new era of DNA research focused on “genomics” – the science of DNA sequences – and a massive drive to create technoscientific medicine for the world. Throughout these developments, debates about race dominated the large-scale sequencing efforts that underpinned research and development in the USA. In particular, the US National Institutes of Health (NIH) led the broadest international efforts to simultaneously characterize human biodiversity with genomics and redefine biomedical understandings of race. In this chapter, I explore how a new medical science conducted under the auspices of Western preoccupations about human difference led to critical developments in biomedicalization, namely new forms of what Rose (2007) calls “technologization” and “responsibilization” – the growth and expansion of technological and moral imperatives in science and society – that have placed the definition and management of an increasing number of social processes in the hands of a narrow corridor of DNA science.
I begin the chapter by discussing the theoretical implications of a race-based and genetics-based biomedicalization associated with classification and identification processes of genetics and race. I then investigate biomedicalization in four domains – racial genome projects, health disparities research, gene–environment research and personal genomics. These four areas cement the appropriation of essentialist notions of life in medical science and their legitimization in public health governance. They also obfuscate the social factors contributing to social processes of race such as institutionalized racism and racial inequality and suggest the dominance of a sociologically inadequate framework for assessing and managing the relationship between health and the environment. Finally, I demonstrate that groups, as much as individuals, are politically disadvantaged by these present developments in biomedicalization, especially around issues of group formation and political advocacy.
Medicalization Meets Racialization
A vast sociological literature has emerged to track the ways medicine has expanded its authority to define and govern social processes (cf. Conrad 1992, 2000; Lock 2004). Studies of medicalization, or “the processes through which aspects of life previously outside the jurisdiction of medicine come to be construed as medical problems,” show that these processes are intensifying and being transformed “from the inside out” by new technosciences (Clarke et al. 2003:162). In the present genomic era, medicine is increasingly aimed at personal biology and health, sold to the individual based on privately profiled information and distributed through informatic networks connected to intricate research and health databases (Atkinson, Glasner and Lock 2009; Schnittker 2009; Conrad and Stults 2010; Clarke et al. 2010). Internet-based genetic health communities have sprung up as test-buyers struggle to interpret their personal risk profiles and plan their biological futures (Miah and Rich 2008; Reardon 2009; Rabinow and Rose 2006). Thus, scholars who previously illuminated the rapid expansion of the role of medicine in everyday life via physicians’ professional expansion, the rise of health social movements and physicians’ organizational claims-making have now shifted to studying the way emerging technosciences are changing the nature of that expansion (Clarke et al. 2003; Conrad 2005). New institutions like the pharmaceutical industry, biotechnology and managed care have become major players in the distribution of medical resources and health policy (Moynihan and Henry 2006; Williams, Gabe and Davis 2008; Pollock 2011). Medicalization is now so technologized that it may be better viewed in some instances as “biomedicalization” (Clarke et al. 2003; also see Bell and Figert 2015, Chapter 1, this volume).
The postwar growth of a molecularized “Biomedical TechnoService Complex” has brought a distinctly genetic form of medicalization (Clarke et al. 2003) – a “geneticization” of social processes in which genetics has become a central lens in interpreting their meaning (Lippman 1991, 1992) and in which genetic findings have displaced prior sociological explanations for those processes (Duster 2006; Goodman 2007). The idea that genetics are responsible for processes like homosexuality or learning disabilities (Hedgecoe 2000; Rapp 2011) has created essentialist notions in the broader society that human traits and behaviors are innate and immutable (Hubbard and Wald 1999; Kay 2000). The development of genetic tests for common traits and behaviors has furthered the belief that individuals must move beyond acknowledgment of their biological destiny and take responsibility for it (Rose 2007). In this environment, the individual management of people’s own health through consumptive practices has thus not only ensured but also comes with a moral imperative (Clarke et al. 2003). As Rose argues, the rise of the new genetic sciences ushers in a technologization and responsibilization unlike any seen before:
For even if no revolutionary advances in treatment are produced, once diagnosed with susceptibilities the asymptomatic individual is enrolled for a life sentence in the world of medicine – of tests, of drugs, of self-examination and self-definition as a prepatient suffering from a protosickness. (Rose 2007:94)
Racialization is another process that becomes an important aspect to understand in relationship to biomedicalization. Racialization, the process by which social processes are assigned racial meaning, is not new (Omi and Winant 1994). But in the contemporary moment racialization intersects with geneticization and thereby expands biomedicalization’s imperative to interpret life as genetically determined and thus in dire need of biomedical expertise. The simultaneous racialization of genetics and the geneticization of race encourages even stronger essentialist forms of categorization – the process by which people are grouped according to perceived similarities in traits and behaviors – and identification – the process by which individuals identify with social categories (Daynes and Lee 2008). In today’s world, categories that are ascribed to individuals and groups are reconstituted in stark DNA terms (Bliss 2011; Roberts 2011). Individuals and groups internalize these categories and interact based upon a biologically essentialist notion of what a human is and what their own selves are all about.
In this chapter, I examine the ways classification in public health, government-sponsored industry and the public creates a system in which people are recognized by and recognize themselves in terms of new biomedical technologies of the gene. This analysis reveals an even more autonomized and marketized imperative at play than that witnessed before the genomic turn in which a highly rarified technoscientized corner of the medical profession drives the medicalization of social processes, and individuals and groups are prevented from seeing the social and political conditions affecting their lives (Bliss 2013).
Biomedicalizing Race
In the latter half of the twentieth century, as genetic technologies proliferated and new genetic sciences assumed responsibility for defining race, meanings of race rapidly changed in science and society. Starting in the postwar period, the notion that race was a social and political construction took hold within the sciences, displacing earlier definitions that race was biologically determined (Morning 2011). The policies of Affirmative Action in public institutions and legal protections, and campaigns for inclusion of minorities in public health, created an environment in which race began to be viewed not as a biological difference but in terms of institutionalized discrimination, socioeconomic status and neighborhood effects (Krieger 2011). Yet with the advent of recombinant DNA science in the 1990s, the question of race’s biological foundation reemerged (El-Haj 2007). Conceptual debates between evolutionary scientists about the biological foundations of race that had continued to unfold below the radar of major government institutions and the public were once again more publicly debated. Placed within this context, they arose to become public health priorities and policies (Reardon 2005).
Nowhere was this shift more apparent than in the burgeoning genetic subfield of genomics. Genomics launched in the late 1980s with a project to map the human genome. At the start of the project, the field did not examine or even debate race (Jackson 2000). Rather, it treated all human DNA as “equal.” The Human Genome Project’s reference genome was comprised of DNA samples of convenience solicited from various regions of the world (Bliss 2012). In the opening years of the project, its leaders did not participate in public health debates over whether to use federal race standards in research and the clinic (Bliss 2012).
Yet, in the early 1990s, the leading agencies of the US Public Health Department, such as the Department of Health and Human Services (HHS), the NIH and Centers for Disease Control and Prevention (CDC), began to make the implementation of federal race classifications a public health priority. These agencies created policies requiring researchers to use federal race categories in all publicly funded research (NIH 1993; also see CDC 1993; Shim et al. 2015, Chapter 3, this volume). In response, genomic researchers began to reflect on the relevance of race to their science and their science to race. The Human Genome Diversity Project, originally conceived as a diversity-focused complement to the Human Genome Project, criticized genomics for proliferating a dangerous biomedical form of Eurocentrism (Roberts 1992; UNESCO 1994). The Polymorphism Discovery Resource, formed in 1997 by a cadre of Human Genome Project chief scientists, assumed the federal mandate to create racially apportioned sample sets based on the federal race classifications (Collins, Brooks and Chakravarti 1998). When the leaders of the Human Genome Project began to bring the project to a close in 2000, they started planning the next major global project with project directors from around the world. They decided to base their project for the new millennium, the International HapMap Project, on the same US federal race standards about which genomic science formerly had nothing to say (Bliss 2012). The result was that they established and became the voices of a new science of race.
The moral imperative rhetoric of the scientists is also apparent in comments made by collaborators in the NIH Pharmacogenomics Research Network. In a series of policy pieces published in the field’s flagship journal Genome Biology and the New England Journal of Medicine, Pharmacogenomics Research Network scientists argued, “A ‘race-neutral’ or ‘colorblind’ approach to biomedical research is neither equitable nor advantageous, and would not lead to a reduction in disparities in disease risk or treatment efficacy between groups” (Risch et al. 2002:A17). Like Lander, these pharmaceutically focused project directors popularized the belief “that ignoring race and ethnic background would be detrimental to the very populations and persons that this approach allegedly seeks to protect” (Burchard et al. 2003:1174).
As the field turned its sights toward gene–environment interactions and whole-genome sequencing, more leading scientists echoed the sentiment that biomedicine needed to use race “as a starting point” (Burchard et al. 2003:1174). Amid the launch of two major international sequencing projects, the 1000 Genomes whole-genome sequencing project and the function-mapping ENCODE Project, then-Director of the NIH National Human Genome Research Institute (NHGRI), Francis Collins, argued that scientists had to take subjects’ race into account in order to characterize health and illness:
Collins also claimed that genomics was the field best positioned to study race in an ethical manner:
I think our best protection against [racist science] – because this work is going to be done by somebody – is to have it done by the best and brightest and hopefully most well attuned to the risk of abuse. That’s why I think this has to be a mainstream activity of genomics, and not something we avoid and then watch burst out somewhere from some sort of goofy fringe. (Quoted in Henig 2004)
In launching new projects to the public and arguing for the field’s responsibility as a leading science of biomedicine and public health, genome scientists coined a new kind of responsibilization more stringent and essentialist than ever before. From here on, doing something about race would mean not only understanding it from a biomedical perspective, but specifically studying it with DNA science. Genomic leaders posited themselves both as ethical stewards for the public in matters having to do with race and as models for the use of new biomedical knowledge about race in the construction of biomedical apparatuses with public health ramifications (Bliss 2011). They simultaneously created the content of that knowledge and the moral framework for using the knowledge and subsequently publicized it to the world.
Biomedicalizing Disparity
Health disparities research is a related biomedical domain that has experienced racialization matched with a rapid and stark geneticization. When the field of health disparities science arose in the late 1980s and early 1990s (Carter-Pokras and Baquet 2002; Braveman 2006), genomics was busy with its own launch of the Human Genome Project. Just as they initially ignored the institutionalized of federal race categories across US public health in the form of minority inclusion policies in all publicly funded research, the new genetic sciences took no notice of the growing efforts to implement a health disparities framework in biomedical research. Thus disparities research developed with a focus on social epidemiological methodologies and environmental factors, including the critical interrogation of what was then defined as social categories like race (Krieger 2005; James 2009).
The characterization and study of health disparities became so ensconced “in the trenches” of emerging genomic science that the HHS turned to the production of race-based medicine as a salve for health inequities. Genome scientists lauded the inclusionary aspects of race-based drug development at the same time as they sung its praises for its potential to save drug makers billions of dollars in clinical trials expenses (Stolberg 2001). As Genaissance Pharmaceuticals’ Gualberto Ruaño argued, in a genetically and racially retrofitted biomedicine “efficacy could be proven in small cohorts instead of populations in the thousands” (Weiss 2000:A1). Ruaño and other leading drug makers equated race-based medicine with access to life-saving therapies that racial minorities would otherwise not obtain (also see Goldstein and Weiss 2003).
The FDA has required drug makers to use federal race categories in clinical trials of new drugs since 1998 (see FDA 1998). Yet, its 2005 approval of the race-based medicine BiDil signaled the crystallization of the US government’s moral imperative to use technoscience as the ultimate resource for social processes associated with race and inequality even, as I show, at the expense of careful science (Bliss 2013). BiDil is a fixed-dose combination of a generic antihypertensive and a generic vasodilator that was developed solely for use in people of African descent. The ethics of this more expensive combination of two safe and efficacious generics was debated immediately (Kahn 2012). However, after a blacks-only randomized clinical trial demonstrated a 43 percent relative one-year mortality decrease in research subjects, the drug was slated for approval without further debate or research (Temple and Stockbridge 2007).
BiDil’s “success” cannot be attributed to a successful race-based clinical trial, because drug makers had already proved that its components worked in all populations. BiDil was successful for the same reasons of responsibilization witnessed in the case of racial genome projects, where scientists appropriated social justice language and targeted racial advocacy groups to popularize their products. BiDil’s makers were able to recruit the most powerful race-based advocacy organizations to support their cause, thereby sedimenting the moral imperative to biomedicalize health disparities and race across governance and within the public (Rusert and Royal 2011).
Here we have the black community accepting the concept that African Americans need to be studied as a group, and then we have the science community claiming that race is dead … It seems to me absolutely ludicrous to suggest that this prominent characteristic that we all recognize when we look at people should not be looked at. (Quoted in Stolberg 2001)
Cohn’s statement exposed the extent to which scientists, policymakers and the public supported the biomedicalization of health disparities. To them, race-based pharmacogenomics was the most race-aware weapon against health disparities, and thus the only truly socially responsible choice in addressing social processes of inequality.
In the wake of BiDil’s 2005 approval, the FDA and the American College of Medical Genetics have petitioned drug makers to reanalyze their blockbuster drugs – drugs that make over US$1 billion in revenue per year – using federal race categories. The HHS has also partnered with a range of regulatory agencies, health justice groups and community-based organizations in support of race-based medicine (Kahn 2013). Statements from a representative of the National Minority Health Month Foundation further express the moral tone of this position:
Underrepresentation of African Americans in clinical studies might partially explain the development of a standard treatment for heart failure that has proved to be less effective for them … Race may be the coarsest of discriminators, but it now has proven life saving potential for heart-failure patients. The evidence that convinced the FDA predicts a dramatic increase in black patients’ survival rate. (Puckrein 2006:371–2)
Racial advocacy organizations have since further coalesced in support of accepted biomedical definitions of race and set their political sights on fighting disparities from a biomedical angle. Exclusion from genomics research has become the new target of minority justice campaigns.
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