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).

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.