Commentary: Thinking through Public Health Genomics


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Commentary: Thinking through Public Health Genomics
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Medical Anthropology Quarterly (MAQ).
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Rapp, Rayna
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1 Rayna Rapp Dep ar t ment of Anthropology New York University Commentary: Thinking through Public Health Genomics ______________________________________________________________________________ As these diverse essays on public health genomics point out, scientific knowledge always emerges from the so cial contexts of its production. This larger sociological truth is deeply historical de spite powerful claims that scientific truths are universal precisely because they have escaped their conditions of creation. In this special issue of MAQ, perspectives moored in medical anthropology and science studies continually highlight the work that s uch universalism does, and what it muffles, as well. As editors Sahra Gibbon and Karen Sue Taussig assert in their introduction: "T he social is never after the fact of technological innovation This claim is substantiated by the se MAQ authors in at least three registers. First, national context counts mightily in fashioning scientific data, public health goals, and the resources on which both old and new strategies of intervention into the health of a given population are designed. Sandra Lee shows this t ruth in the market driven work of U S "recreational" genetics companies These for profit innovations systematically muddy the popular and compelling search for ancestry, now in a genomic register, with a re created personal risk profile for diseases, dis orders and drug metabolism based on assumed racial/ethnic background. As any bioinformatics savvy research er will quickly point out, such genomic test kits are only as good as their database to which individual samples are compared : I f the database is ove r representative of one or more groups, and underrepresented for others, it will surely reproduce existing truths of the categories in which it is collected Yet both commercial and most academic research databases are premised on highly biased and skewed samples, heavily dependent on "white" America n DNA specimens that assimilate the diversity of much of the world's populations into meager samples from Africa or Asia despite the African derived origins of all other continent of origin populations. Lee inte rviewed 50 consumers of 23&Me testing services illustrating how this skew was nontrivial in the disease profiles of people whose genome markers for disease risk were underrepresented in their commercial database. The corporation is respond ing to the ir sci entifically disproportiona te Euro American derived data base by conducting a public private effort entitled "roots for the future" to recruit a more diverse ancestry sample that focuses on African Americans In the process, the company is reinstantiating ol der notions of "race" in their efforts to construct a product that will appeal to a wider, more diverse consumer market whose profits they have barely begun to tap. 23& is as American as apple pie in the assumptions behind the admixture technologies they use to probe DNA samples for "continent of origin "; the lopsided samples that currently make up their database and that they are attempting to expand and realign for more successful market share; and the unreflexive categ ories of race that undergir d t he collection of data that is belied by a very ethnic sensitive explication of "c hoice" in self labeling explained on their website. In other words, the very scientific problem, its potential solution, and its larger goals are all market based, reinforcing categories and strategies of what a "public health" genomics might look like for many Americans


2 It is easy to contrast this commercialized project with the e fforts described by Sahra Gibbon. Her fieldwork followed Cuban health care workers in their effo rts to make genetic knowledge valuable to families and communities, not necessarily to individuals Cuba is far from the promissory ideology, prevalent in many Western countries, of personalized medicine. Cuban commitment to "community genetics" is roote d in its longstanding and highly successful programs of maternal/child health ; there is neither an ideological valorization of nor a technological drive to explore personal medicine using genomics as its portal. In any case, the resources required to mount a genomic approach to individual testing and intervention are lacking in Cuba. Yet Cuban records focus attention on family ped i grees with dense cases of late onset diseases like Alzheimers, heart disease, diabetes, and common cancers : Cuban health care wo rkers learn about such tests, their genetic linkage, and their value as part of demystifying the widespread stigma of diseases that are understood to run in families At present, such pedigrees are used to enhance community education but not to design pers onal genome based interventions for which there is no support Health care workers in community genetics are overwhelmingly women; they link their own personal narratives, and those of the families they serve, to ongoing revolutionary commitments to "the peoples' health as they understand it. Although this does not affect individual testing beyond prenatal and neonatal screening it enables a social biological imaginary to be linked to the future of new, potentially heroic state based medicine. This is s urely a projec t specific to Cuban history, aimed to build community loyalty and mobilization through state provided health care even when resources are scarce. Thus national context shapes public health genomics. Second, ethnographic and allied methods p rovide powerful keys to unlock the "black box" of scientific research, illuminating the complex assumptions, aspirations, and practices around which new knowledge is rigorously manufactured. This is surely the case in Susan ne Bauer's analysis of public hea lth genomics through what she describes the epidemiological apparatus as a generative machine that is socially performative Contemporary genomic epidemiology is in large measure based on the limits of prior notions of genetics I nitially many epide miologists hoped that complex diseases would be understood through new genomic technologies yield ing an interactive picture of multiple genes in consort with one another. However, the limits of such thinking were quickly and empirically reached over the l ast decade in international, collaborative research ; contemporary epidemiological genomics is now based on epigenomic phenomena, exploring how cascades of interactive genomic stretches are activated or silenced by environmental triggers that have long last ing effects. This is, of course, a much more complex model, one that proliferating databases and genomic tools enable many scientists to explore. Susanne Bauer parses this process in its still evolving methods. Interpreting emergent theories of environment al complexity as they are embed ded in measurable genomic patterns and then sorted into risk categories, Bauer shows how the powerful statistical tools of epidemiology are built to travel across individual and population "exposures producing norms of heal th behavior. These change over our collective and abstracted life cycles. Indeed, in the new PH genomics, we have all become individual data points that move thr o u gh shifting risk patterns as we age, are exposed, do or don't have children, exercise, follow changing nutritional instructions and so on F or such open ended, associational, algorithmic patterns to become credible, their elegance is constructed in large measure through the exclusion of unknown, complex contingencies. Instead, Bauer describes and analy z es a "traveling apparatus" that can


3 produce health recommendations at the population level that individuals are then urged to adopt/adapt as new heuristics of health. Epidemiological methods, expertise, and large scale data are all recruited in the service of new descriptions of public health problems as if they indexed new interventions. Whether they actually make a difference at the individual, or even population level, remains a very open question. All of this would be science as usual in the serv ice of larger public health goals Y et the very complexity of tools, tasks, and productive algorithms is so far removed from public conversation that authority and mystification are almost inevitably structural doppelgangers of one another. From a very di fferent perspective, Ian Whitmash also analyzes emergent science and its multiple black boxes : in his framework, evolving notions of the environment work as classic Levi Straussian operators that confer "mana" and reenergize the largely unsuccessful field of genomic medicine They link new understandings of genomic complexity to the promise of intervention into Barbados' astoundingly high rate of asthma. Barbadian health care providers, planners, regulators, and families caring for members with the disease all cooperate in longstanding international research endeavors T heir diverse and unruly understandings of the environment focus on various notions of pollution in the island's recent development ; locals speak disapprovingly about the noticeable increase i n dust as roadwork and housing become more high tech. I nternational research teams however, are more likely to focus on indoor toxin load, measurable through their samples. F or local health care providers and families with asthmatic members, there is also widespread concern about dramatic increases in consumption of commercialized imported food that has replaced locally grown "ground produce" in recent memory. How can all these concerns be domesticated into quantifiable measures of genomic interaction? D a tabases from these endeavors reduce and regularize more polysemic notions of dust and overprocessed food that characterize local descriptions of the rapid social environmental changes experienced as asthma genic. The sci entific focus on atopy/allerg ic resp onses can usefully be linked to measurable household pollutants on the one hand, and genomic variation on the other. M issing is the common sense critique of modernity that stand s behind the development of susceptibility as environmentally triggered. Yet no ne of the data here, an Afro Caribbean stand in for "African" genomics in well funded international comparative research for which Barbadian data collection stands as a n alluring model would have been made possible ( i.e., manufactured ) without those dusty notions and experiences. Collectively t hese article s point toward a third instance of the co production of the bio social as a necessarily heterogeneous entangled entity: Biopolitics in the post genomic era is emergent, complex and increasingly focused on gene/environment interactions. It is not accidental that sites as diverse as 23&Me and the Barbadian Ministry of Health are both collecting genomic samples that are conducive to data mining. Whether in the Euro American data assemblages described by Su zanne Bauer or the proliferation of DNA databases enumerated across many parts of the globe in our editors' introduction, multiple publics have become part of exquisitely stratified research populations and now serve as both potential global resources and market beneficiaries This stratified heterogeneity, as subject/object of database research is found in biotech efforts in South Africa China, Estonia, and many other parts of the world beyond those necessarily few national contexts tracked in these arti cles. Depending on how environment and biopolitics are understood and enacted, public health governance of individual/citizen risk and intervention is rapidly shifting toward new models in


4 which capital investments and tech nology races for market share oft en hold a key place These are, almost by definition, mixed pub lic/private endeavors ( with the exception of Cuba, well described here and throughout the work of Sahra Gibbon, Sean Brotherton, Elyse Andaya and others): Cuba as neoliberal exception? Or as p art of how neoliberal markets stratify? We see such re stratification through large scale genomic research and testing in consort with various market forms rapidly emergent in many parts of the globe: T hese essays point us toward the many issues a history of the biopolitical present raises The ethnographers whose accounts you have just read enable us to ask: Qui b ono? Where might the field of medical anthropology best do the long term work of ferreting out and highlighting the shifting means and meanings t o which public health genomics is now subject? MAQ gives us inspiration to address this special issue in a doubled sense, as we read and revise our collective work to include heightened attention to public health genomics.