Jonathan Xavier Inda & Sibille Merz
SM: Racial Prescriptions provides a timely, illuminating and theoretically-engaged analysis of the making of BiDil, the first (and only) drug that was marketed exclusively to African Americans. Even though it has proven commercially unsuccessful, the drug has triggered a remarkable discussion, academic as well as activist, about the increasing geneticisation of race, the nature of racial health disparities in the US, and the re-articulation of racial politics under neoliberalism. What motivated you to write the book?
JXI: One of my main concerns as a scholar has been to explore the exclusionary politics of race in the United States. For example, my first book, Targeting Immigrants: Government, Technology, and Ethics (2006), deals with racial politics of immigration. The major aim of this book is to situate the government of “illegal” immigration within what scholars have called advanced liberal modes of rule. These are forms of governance in which the political apparatus no longer appears obligated to safeguard the well-being of the population through maintaining a sphere of collective security. Instead, it becomes incumbent upon individuals to take upon themselves the primary responsibility for managing their own security and that of their families. Targeting Immigrants notes that while scholars have nicely analysed how advanced liberal governments work through promoting the self-managing capacities of individuals, they have paid scant attention to how such regimes also operate through practices of exclusion. What these types of government have done is produced a highly naturalised and racialised division between those who secure their own well-being through judicious self-promotion and those who are deemed incapable of managing their own risks (welfare mothers, for instance). Significantly, while the government of the former has largely taken place through the mechanisms of the market and outside the formal political apparatus, the regulation of the latter has increasingly occurred through law and order measures (e.g., three strikes laws). The logic here is that responsible individuals must be protected from all those who threaten their security and quality of life. It is primarily within this exclusionary side of advanced liberal government that Targeting Immigrants situates the contemporary problematisation and governing of undocumented immigration. The book argues that “illegal” immigrants—typically racialised as criminals and welfare dependents—have essentially been constructed as imprudent subjects incapable of exercising responsible self-government and thus as threats to the overall well-being of the social body. Moreover, it notes that the programs and technologies that have been formulated to govern them and contain their threat—particularly at the US-Mexico border—have been rather exclusionary and punitive. So much like the management of marginal citizens more generally, the preferred method of governing “illegal” immigrants has been through crime.
Racial Prescriptions continues my examination of the politics of race in the United States. However, instead of dealing with the domain of immigration, it analyses the field of pharmaceutical production and marketing. The book is intended as a contribution to the rethinking of race and biopower in the genomic age. In The History of Sexuality, Michel Foucault remarks that biopower designates “what brought life and its mechanisms into the realm of explicit calculations and made knowledge-power an agent of transformation of human life” (1980: 143). Biopower thus points to how political and other authorities have assigned themselves the duty of administering bodies and managing collective life. Building on Foucault’s work, scholars such as Paul Rabinow and Nikolas Rose (2006) have sought to rethink biopower for the 21st century by taking into account developments in the genetic and biological sciences. They suggest that new knowledges of life have fundamentally altered society’s capacity to engineer human vitality. Specifically, the molecularisation of life—that is, the understanding of life at the level of genes and molecules—has led to the envisioning of biological existence as a collection of intelligible vital elements that can be identified, isolated, controlled, mobilised, and reassembled. As such, life is no longer seen as natural or immutable destiny, but envisioned as inherently manipulable and re-formable. From this perspective, biopower today is about controlling and managing human biological processes in order to prevent disease, enhance health, and optimise the quality of individual and collective existence.
Focusing on BiDil, Racial Prescriptions suggests that we need to locate racialised pharmaceuticals within the biopolitics of the 21st century. I thus argue that scientific uses of race in the genomic era do not amount to a return to scientific racism. Today’s scientific ways of thinking and intervening upon race do not aim to set up immutable hierarchies of difference, discover essential racial truths, stigmatize populations, or legitimate inequality. Rather, their general principle is hope: hope that discovering the genetic factors underlying human disease might lead to interventions that will increase the health and well-being of racialized populations. In today’s configuration of knowledge and power, racial life is thus not seen as destiny, a specific biological fate to which individuals are consigned, but as potentially malleable and open to various kinds of positive interventions and transformations. As such, what I call the molecular vital politics of race is about maximising the quality of individual and collective life in all its difference. However, I also suggest that biopower today has an underside. While the use of “race” in the production of pharmaceuticals is ostensibly life affirming, it is also scientifically tenuous and politically dangerous. Scientifically, a wealth of evidence suggests that while there may be differences in how populations react to drugs, overall they tend to overlap significantly in their response. There is thus no reason to target drugs to specific populations. Politically, there is a question as to the utility of trying to deal with health disparities by means of genetic technologies While BiDil might be touted as helping to reduce health care disparities, the drug could actually contribute to the reproduction of inequality (see more below). If too much weight is given to genetics as an explanatory factor in disease causality, the effect could be to minimize other and proven explanations of health disparities, namely the social and physical environment. While my two book projects deal with rather different subjects, ultimately they are both concerned with race and power—with the ways that knowledges, discourses, and practices work to marginalize and exclude racial and minority populations.
SM: At the same time as BiDil was being developed, other research such as the fenfluramine experiment in New York City (1992-1997) sought to find evidence for a genetic predisposition to violence in Black boys. This was reminiscent of a long history of both scientific racism, and exploitative and unethical medical experimentation on African Americans. Do you see such experiments as exceptions to the racial politics of life, a politics that aims at fostering the biological vitality of the racial body, you insightfully describe in your book?
JXI: I would say yes. Such experiments are exceptions to the racial politics of life I describe in Racial Prescriptions. Today, genetic scientists who employ race in their work generally do so with the aim of fostering racial life. Central to understanding the contemporary use of race in biology is the mapping of the human genome. In 2000, the Human Genome Project (HGP)—an effort coordinated by the US Department of Energy, the National Institutes of Health (NIH), and Celera Genomics Corporation (a private biotech company)—succeeded in sequencing the three billion base pairs that make up human DNA. The primary impetus behind this mapping was to search for ways to prevent, diagnose, and cure disease—that is, to improve human health. The idea was that the decoding of the genome would permit scientists to identify human genes and thereby enhance our knowledge of the key biochemical processes of the human body and the genetic causes of disease.
In regard to the subject of race, the initial pronouncements following the sequencing of the human genome focused on the sameness of humanity. The sequence showed that humans share 99.9 percent of their genetic makeup, so HGP scientists proclaimed that human beings are essentially alike genetically and that racial differences have no bases in biology. However, other genomic researchers soon began to argue that even a .1 percent variation in genetic composition could translate into biomedically significant difference and that this variation noticeably maps onto traditional notions of race. The current trend in genomic research is thus increasingly to focus on that small amount of genetic variation that separates one human being from another, with racial and ethnic categories, which are presumed to signify biological difference, serving as necessary variables. Notably, the justification for this type of genomic research is still to enhance human health and vitality: knowledge of human genomic variation, particularly of racial and ethnic differences in disease susceptibility and drug response, is thought to be potentially valuable in making medical diagnoses and dispensing treatment.
Research such as the fenfluramine experiment is an exception to the racial politics of life I describe in my book because it does not aim to foster the vitality of the racial body. Rather, it appears to be about stigmatising blacks and rationalising inequality. As such, it is unequivocally part of the long history of scientific racism. Beginning in the eighteenth century, as part of the more general effort to find order in nature, scientists have sought to use physical features—such as skin colour, the shape of the face and skull, and hair form—to construct classificatory schemes of humankind. On the basis of skull formation, for example, the German physician Johann Blumenbach (1969) divided the human species into five varieties or races: Caucasian, Mongolian, American, Ethiopian, and Malay. Although such classificatory schemes were initially taken as referring to somewhat fluid biological groupings, by the nineteenth century they were seen as describing fundamentally distinct types of humans. Furthermore, individual racial groups came to be viewed as possessing different natural capacities: to reason, make moral judgments, attain civilised behaviour, and so forth. Ultimately they were ranked in relation to one another, with some groups deemed innately superior and others inferior. Specifically, racial scientists insisted on the essential superiority of white Europeans, distinguishing them from the “other” groups and effectively establishing a hierarchy in which physical markers came to designate the place a group occupied in social relationships. The scientific systems of classification advanced during the nineteenth century thus created seemingly immutable hierarchies based on the molar, phenomenal differences among humankind—that is, on the belief that certain physical traits are tied to attributes of behavior, intellect, and morality. As such, race was basically constructed as an essence, a natural, biological phenomenon whose meaning is prior to and beyond the reach of human intervention. Indeed, for racial scientists, race was destiny.
This biologically determinist way of thinking about race, which lasted in different guises well into the twentieth century, underpinned diverse but invariably exclusionary racial politics of life.
SM: I am interested in precisely which racial bodies come to matter – and why. Clinical evidence suggests, for example, that self-identified Asian Americans (as problematic as the category might be) show at least as many differences in drug response as Black Americans. Is the ethical and symbolic value that products such as BiDil produce predicated on the particular history of transatlantic slavery?
JXI: I would say that, on some level, the value that products such as BiDil produce are indeed predicated on the particular history of transatlantic slavery. Specifically, BiDil can be understood as a form of racial redress—as an effort to remedy the historical neglect and abuse of African American bodies that is a legacy of slavery. So if we look at the advocacy efforts of African American organizations on behalf of BiDil, we find a strong emphasis on the biomedical neglect of blacks, that is, on how this community has historically been excluded from the benefits of biomedicine. One aspect of this neglect is the lack of available effective medications for treating African Americans with heart failure. For example, Malcolm Taylor, chair of the Association of Black Cardiologist’s (ABC’s) Heart Failure Committee, notes that “African-Americans may also be underserved in heart failure because some existing drugs, such as ACE-inhibitors and ARBs, approved for use in heart failure, may be less effective in African-American patients under certain conditions. These ethnic differences are documented in package inserts for enalapril (Vasotec), and for losartan (Cozaar), indicating less favorable outcomes in African American patients” (Taylor n.d.) Another aspect of biomedical neglect is the African American community’s general lack of access to health care. The ABC, in a report on cardiovascular health disparities coauthored with the NIH, highlights the inequalities in the health care system: “Structural factors and inequities in health care resources may hamper African Americans in gaining access to quality care. Large numbers of African Americans receive care in urban medical centers or community clinics. In both types of settings, resources may be lacking to deliver the high level of care required for good outcome” (ABD and NIH 2004)
In this context, BiDil, as a medication targeted specifically to blacks, clearly functions as a way to redress racial exclusion. It not only serves to remedy the marginalisation of blacks in biomedicine, but also to affirm forms of life that have historically been devalued. The affirmative valuation of black life is both individual and collective. On an individual level, the promise of BiDil is to save African American lives and improve the quality of a person’s individual existence. On a collective level, BiDil promises to reduce health disparities. It is about eliminating the inequalities that exist between blacks and other populations in regard to cardiovascular health. The creation of BiDil thus sends the message that the maladies of African Americans are worthy of being treated and that black lives merit saving. As such, the prospect of inclusion, health, and happiness here becomes entwined with access to pharmaceuticals.
On one level, then, black bodies, as opposed to other racial bodies, come to matter because of the need to remedy the long history of African American neglect and exclusion. But I would say that black bodies matter not just because of the need for racial redress, but also because they are economically valuable. Indeed, there is little doubt that commercial factors were also a driving force behind the production of BiDil as a racial pharmaceutical. The scientists who developed BiDil first sought to have the drug approved for the general population. When the FDA turned them down, they went back to the data from their clinical trials (the Veterans Affairs Vasodilator-Heart Failure Trials, V-HeFT I and II), reanalysed it along racial lines, and concluded that BiDil appeared to work better in blacks than in whites. Race thus came to matter only following the FDA’s rejection. The BiDil scientists essentially turned to race to salvage the drug. They were able to do this in part because of the propitious political climate. The reanalysis of the BiDil data took place in the context of increasing political desire to address race and gender disparities in health care. The scientists were also able to turn to race because African Americans have a sociopolitical identity that makes them a powerful market force. Indeed, as health sciences scholar George Ellison has pointed out, “it’s possible to develop a drug for African Americans because we can identify them, we can market to them, we can sell it to them” (Malik 2005). If they were not a potent market force, pharmaceutical companies would not be producing drugs just for them. BiDil’s production as a racial medication was thus not simply about racial redress and saving African American lives but also about the profits to be derived from saving the drug and selling it to blacks.
SM: In Racial Prescriptions you cogently demonstrate that BiDil is not likely to resolve health disparities as they are largely caused by deeply entrenched socio-economic and historical inequalities rather than genetic predisposition. Do you think racialised medicine might reproduce or even exacerbate existing inequalities?
JXI: It’s almost certainly the case that racialised medicine will reproduce and even exacerbate existing inequalities. In Racial Prescriptions, I argue that genetic researchers today generally have a complex, nonreductionist take on race and genetics. For example, although they have certainly highlighted the genetic nature of heart failure in African Americans, they have not minimised social and environmental determinants. In fact, they have argued that factors such as poor access to good health care services and exposure to environmental pollutants contribute to high heart failure rates among blacks. However, when socio-environmental factors are taken into account in genetic medicine, race-based medicine included, they are often treated simply as triggers—as sparks that activate molecular changes in an individual’s body. Disease is thus seen as fundamentally a problem of the body. It is how the body responds to exogenous stimuli, and not necessarily the stimuli themselves, that is important. The key to producing health is therefore knowledge of the body and its genetic processes. This knowledge allows researchers to devise medical technologies designed to prevent, resolve, or alleviate the body’s maladies. In a US neoliberal context, which is characterised by a downscaling of the state when it come to the social protection of the population, such a model of well-being has intrinsic appeal. If it is possible to remediate illness through molecular medical interventions, then there is no need for the state to deal with social inequalities, environmental pollutants, and other factors that contribute to the production of poor health. Genetic medicine can thus be used by the state as a pretext to absolve itself of the responsibility for social investment in the population and to make health a matter of only personal responsibility, something to be procured through purchasing genetic products in the marketplace. Under neoliberalism, then, genetic medicine is appealing because it promises to produce both health and wealth (because biomedical technologies present opportunities for capitalization), all without the necessity of costly social interventions.
It is already evident that the characterisation of diseases as genetic, even where it is clear that social factors are involved, has ushered in a trend to address maladies through biomedical interventions (genetic screening, genetically tailored therapy, and so forth) rather than by ameliorating conditions in the social environment. A case in point is autism. Nowadays autism is largely regarded as a genetic condition, even though research suggests a strong role for environmental pollutants (for example, lead, mercury, ionising radiation, industrial chemicals, and pesticides) in producing the disorder. A primary goal of autism research has thus become to find genes for autism, the ultimate goal being to develop pharmaceuticals and other commercial technologies to manage the condition. The problem with putting research emphasis on the genetics of autism, as Majia Holmer Nadesan points out, is that
the seductive combination of genes and dollars has the potential to crowd out other research trajectories and autism-funding priorities. The concern here is that knowledge and products developed by the pharmaceutical-research complex will likely promote autism detection (tests) and pharmaceutical “management” over the more costly (in terms of initial investments) therapeutic approaches that are labor- and resource-intensive (such as sensory-integration therapy and special education services) and over alternative research approaches that might curtail industry profits by foregrounding environmental explanations for autism and other syndromes and diseases. [2013: 123]
This scenario, that other autism funding priorities will be crowded out, appears to have become reality in the United States. Today, little federal funding exists for environmental research on autism, so autism prevention efforts that emphasize environmental solutions, as opposed to pharmaceutical cures, are practically nonexistent. Furthermore, at the national level, there is almost no public funding for services to help individuals diagnosed with autism to live meaningful lives. The framing of autism as a genetic disorder is thus leading to a minimization of the need to attend to the social environment as a way of preventing and managing autism. In the process, the state is absolved of the responsibility for monitoring industry and regulating contaminants known to contribute to the production of developmental disorders.
Given the increased tendency to deal with diseases marked as genetic strictly through technical means, the rise of race-based medicine portends a similar trend with respect to how the maladies of racialized populations are managed. Despite the proven role of social factors such as racial discrimination and poverty in explaining racial disparities in health, the suggestion that genetic research holds promise in the campaign against such inequalities finds fertile ground in a neoliberal milieu. The characterization of racial health disparities in terms of genetics essentially means that the state does not have to act to address environmental factors in order to produce health. Rather, it can simply let the market handle socially produced health problems through the manufacture of racially targeted medications and other technologies for mass consumption. Thus, as Dorothy Roberts argues,
racial medicine has tremendous potential to affect the direction of state efforts to address health disparities, and racial inequality more broadly, by diverting attention from the structural causes of racial inequities toward genetic explanations and technological solutions. The public may think that race-based medicine shifts responsibility for addressing disease from the government to the individual by suggesting that health disparities are a result of genetic variation rather than inequitable social structures and access to health care. [2011: 542]
Given years of retrenchment, the state has already reduced support for social programs meant to cultivate the life and welfare of disadvantaged populations, including racialized minorities. The suggestion that the problem of health disparities can be resolved through racial medicine only gives more ammunition to the neoliberal project of social disinvestment. Instead of fostering racial life, then, race-based medicine will likely make it more precarious. Indeed, to the extent that racialized medicine compels continued disinvestment in social programs, the effect will be to further impoverish the lives and health of racial minority populations.
SM: What do you imagine is the future of racialised medicine?
JXI: As I explain in Racial Prescriptions, BiDil did not do well in the marketplace. But this failure does not appear to have hampered the drive to use of race in biomedical research and pharmaceutical development. In fact, the interest in race-based therapies appears to have accelerated. We can see the continuing value of race in at least two domains: patent protection and drug product differentiation. With respect to patents, Jonathan Kahn (2013) conducted an analysis of gene-related patents issued and patent applications filed between 1976 and 2007. He determined that there has been a significant trend toward using racial and ethnic categories in such patents, the trend being the result of both the large amounts of genetic information that have been produced in the wake of the Human Genome Project and the federal requirement to use racial and ethnic categories in drug development and clinical trials. Kahn specifically found that the number of race-inflected patents issued went from 0 between 1976 and 1997 to 29 between 1998 and 2007. As for patent applications filed, the number that included race-related terms was 151 between 2001 and 2007, with 86 being filed between 2006 and 2007 alone. The terms used in these patents include race, ethnic, African American/black, Asian, Caucasian/white, Hispanic/Latino, Native American, and Pacific Islander.
The proliferation of racial patents and patent applications is highly significant. It signals that biotechnology and pharmaceutical companies are following in NitroMed’s (the maker of BiDil) footsteps and seeking to develop products targeted to particular races.
Besides being used in patents, race is also being employed as a way to differentiate pharmaceutical products in a crowded marketplace. The idea here is simply that pharmaceutical companies are racially branding their medicines as a way of differentiating them from similar products. For the foreseeable future, then, it appears that race will continue to play a key role in genomic medicine.
SM: Finally, what is your current research project looking at?
JXI: Recently, I started working on a collaborative project (with Suvendrini Perera, Joseph Pugliese, Sherene Razack, and Marianne Franklin) tentatively titled Deathscapes: Violence and Race in Settler Societies. This research continues my interest in race. It seeks to develop new ways to understand, teach about, and respond to racial violence in the settler states of Australia, Canada, and the United States. Our focus is on two defining figures of the settler state, the indigene and the racial stranger at the border. Whereas the deaths of these figures most often tend to be documented and analysed by experts and authorities working with different disciplinary assumptions about the meanings and implications of such deaths, and deploying different data sets that establish their deaths as unconnected phenomena, we aim to situate the deaths within the shared context of a set of particular institutions and formations, namely those of the settler state.
Working across three states, then, this research project seeks to document and analyze the deaths of Aboriginal and racialized people in police, prison and state custody as crucial sites of state responsibility. We are interested in examining how such deaths occur, and to elucidate how legal and social accountability for them is understood and assigned or disowned. In the context of the structures and institutions of the settler state, we adopt a biopolitical framework to identify the tactics and strategies that serve to preserve the lives of some subjects of the state, while promoting the death of others. Through this analytical frame, the violence at multiple sites is connected across the shared repositories of discourses, practices, and policies that make up the nation.
Importantly, the research also has archival, analytical, and pedagogical functions. Working collaboratively with community groups, we aim to produce a new anti-violence research methodology as well as tools for advocacy and education. There is an essential digital dimension to the research: to develop an interactive multimedia site that furthers the archival, analytical, and pedagogical functions of the project. The website will function as an online mapping platform that records where instances of death and violence happen and how they are understood and responded to. It also provides the documentation and analysis of these events necessary to support the scholars, educators, and community legal and advocacy groups and enables who are working against racialized violence.
Jonathan Xavier Inda is Professor of Latina/Latino Studies at the University of Illinois at Urbana-Champaign. His book Racial Prescriptions: Pharmaceuticals, Difference, and the Politics of Life was published by Ashgate in 2014.
Sibille Merz is a doctoral researcher at Goldsmiths. She is one of the review editors for theoryculturesociety.org.
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