The Biosociality of Public Health

Grappling with the molecularization of difference and the importance of social science in public health.

In his seminal work “An Anthropology of Structural Violence,” Paul Farmer emphatically calls upon social scientists to resocialize the disciplines of biology and global health; bringing the social dimensions of illness experience into relief with analysis that makes explicit the social mechanisms through which difference is molecularized (Farmer, 2019, 9). As Farmer warns, without the biosocial narrativization of illness experience, biomedicine obscures the causalities of health inequalities, inadvertantly naturalizing unequal health outcomes (Farmer, 2004, 319; M’charek, 2013, 421). Particularly as the ontology of biodeterminism unravels in the face of the advancing science of epigenetics (Napier, 2020, 98), biosocial analysis is more critical than ever to grapple with the malleable barriers of nature and culture. Under such circumstances, the delicate medicalization of difference necessitates the input of social science to avoid the rote projection of social constructs upon biology which has a long history in biomedicine (Davis, 2019, 569). From race science (Davis, 2019, 570) to gendered theories of autism (Jack, 2011, 1-2), there are numerous case studies of biomedicine using biological framings to naturalize social constructs of difference. Such naturalization of social constructs not only obscures how society creates inequality, these framings also perpetuate discriminatory medical treatment that compounds unequal health outcomes (Davis, 2019, 561). As epigenetics reveals the realities of societal otherization manifested in the body (Niewöhner, 2020, 53), it is critical for biomedicine to take up Paul Farmer’s call (Farmer, 2019, 9) and commit to an intricate collaboration with social scientists. Social constructs of difference are an integral part of health outcomes, yet without a biosocial analysis that demonstrates the nuanced interplay of society and biology, biomedicine runs the risk of essentializing difference rather than productively engaging difference to enrich health outcomes. To underscore the urgency of Paul Farmer’s appeals to the biosocial braiding of the biological and social sciences, I will present three case studies of medicalized difference across the spectrum of biological legitimacy and explore how biosocial analysis can be applied to each case to improve health outcomes and challenge prevailing discriminatory healthcare models in biomedicine.

As calls for scientists to tend to racial disparities in health outcomes grew over the past decades, biomedicine took up the calls for inclusion (Helberg-Proctor et al., 2017, 9). Yet biased with taxonomical empirical methods and lacking in social science training, their efforts inadvertently contributed to further engraining the forces of racialization they sought to combat (Helberg-Proctor et al., 2017, 9). Contemporary health research attempting to account for disparities in health outcomes often formulate racial and ethnic categories in ways that obscure their socio-political origins, naturalizing race in a manner that closely mirrors the race science of early eugenics (Diao, 2024, 2089; Helberg-Proctor et al., 2017, 2). One such case of health research gone wrong was inspired by a 2007 Trend Analysis Biotechnology report that identified ethnicity as a potential variable in genetic public health research (Helberg-Proctor et al., 2017, 8). While the concept of heterogeneity in human biology and genetic variabilities due to epigenetics holds a degree of scientific validity (Niewöhner, 2020, 45), the common implementation of these conjectures in health research mirrors social notions of difference rather than actual genetic clusters (Helberg-Proctor et al., 2017, 8). Using the genetic conjectures of the trend report as inspiration, Dutch health researchers formulated projects that scientifically reproduced the political categories of difference “autochtoon, Western alochtoon, and non-Western allochtoon” (Helberg-Proctor et al., 2017, 8) with allochtoon referring to immigrant populations. While the research’s stated intent was to remedy health inequalities and tend to health vulnerabilities, public health researchers transformed abstract social constructs of difference into biological realities. 

When social constructs of race are geneticized, unequal health outcomes are naturalized as a matter of biology, further compounding poor health outcomes for marginalized patients as doctors use racialized narratives of biology to justify negligent care (Davis, 2019, 565). Such is the case in the field of pulmonary health. Metrics of “Black” lung capacity are consistently lower than metrics of “White” lung capacity in the United States (Harik-Khan, 2004, 894). Though these inequalities in lung health are the result of racist social processes (Harik-Khan, 2004, 896) health researchers interpret the statistics as inherently biological which naturalizes poor lung health for patients racialized as black (Anderson, 2020, 124). As a result, health inequalities are compounded: African Americans report higher rates of pulmonary hospitalizations as a result of suffering from pulmonary issues due to social processes of racialization, and in addition to these greater vulnerabilities they are also less recommended than White patients for pulmonary rehabilitation due to the perception that lower lung capacity for black patients is “biologically standard” (Anderson, 2020, 124). Such a lapse in judgement in the case of pulmonary care is a result of doctors viewing their patients' health status through the lens of race causing them to make interpretive fallacies in the process of treatment (Davis, 2019, 565). As Paul Farmer expresses, when biomedical logic excludes the social dimensions of illness, it fails to address the root cause of health inequalities (Farmer, 2004, 309)  which, in the case of unequal pulmonary outcomes, are the social forces of racial oppression (Harik-Khan, 2004, 896). A robust biosocial analysis could remedy inequalities racialized patients experience in the spaces of healthcare by making visible how race science is used to justify the neglect of racialized populations in healthcare settings. Furthermore, a biosocial analysis would shift attention towards investigating the larger social processes of violence that are at play in creating adverse health outcomes for marginalized populations.

Whereas race as a social construct lacks biological legitimacy, autism is a biosocial condition with genetic components (Nadesan, 2005, 2). Still, in biomedicine’s biases towards the biological, the genetic features of autism have historically been overemphasized, with a long tradition of biomedical research on the condition that almost exclusively focuses on the expressions of autism at the neurobiological and molecular level (Fein, 2015, 101). The irony of this biological myopia is that autism can only be diagnosed at the behavioral level (Goldman, 2013, 676) as it lacks clear biological markers upon which a diagnosis can be drawn (Jack, 2011, 75). A new social constructionist tradition of conceptualizing autism flips the biomedical script by framing autism as a fundamentally biosocial phenomenon that must be treated as contingent upon the socio-historical contexts within which it manifests (Fein, 2015, 233).  The behavioral expression of autism is proven to be directly shaped by experiences of socialization (Fein, 2015, 232), as such a biosocial understanding of the condition is critical to diagnostically capturing various manifestations across different populations. 

The critical necessity of this biosocial analysis can be seen when looking at the rampant gender-essentialism in the field of autism research and diagnosis (Baron-Cohen, 2002). Much like biomedical science has a history of essentializing race (M’charek, 2013, 421), also present is a history of essentializing gender, a tradition particularly prominent in the field of autism research (Baron-Cohen, 2002). The influential extreme male brain theory of autism purports that autistic individuals have hypermale brains because they score high in systematic thinking, a biologically male trait, and low in empathy, a biologically female trait (Baron-Cohen, 2002, 250; Jack, 2011, 12). Mapping cultural gender stereotypes onto biology, the extreme male brain theory went so far as to state that male brains, and autistic brains, are heavier than female brains due to their systematizing power (Baron-Cohen, 2002, 252; Jack, 2011, 12). While Baron-Cohen’s absurd gender essentialist pseudoscience has been discredited many times over (Jack, 2011, 12), the notion of autism as a hyper-male condition still dominates the biomedical conceptualization of the condition (Goldman, 2013, 676). The use of gender as a screen through which to conceptualize autism has led researchers to historically shift their focus towards certain traits of autism and away from others (Jack, 2011, 21). Neglecting the biosociality of the condition, the diagnostic tools for ASD are set on a male baseline, failing to account for how the gendered social environment leads to divergent manifestations of the condition for individuals socialized as men or women (Goldman, 2013, 677). Young girls, socialized to please others in their social environment, often respond to autism internally and develop anxiety and depression which comes off as shyness, a socially acceptable norm for their assigned gender (Uclahealth, 2023). Examination bias that conceptualizes autism as a male condition (Goldman, 2013, 677) coupled with how gender socialization impacts the expression of the condition has led to girls being missed in the diagnostic process, with an estimated 80% of autistic women being undiagnosed by the age of 18 (Uclahealth, 2023). Biosocial analysis in the field of autism research is critical for closing these diagnostic gaps by revealing the social dimensions that shape the condition’s expression.

From a discursive point of view, social dimensions not only impact the behavioral expressions of autism, they also impact how autistic behaviors are framed within conditions of alterity. Biomedical theories of autism often label the condition as a social impairment, thus perpetuating neuronormativity that privileges the relational and communicative patterns of certain neurotypes over others (Belek, 2019, 233). Naturalizing the notion of autism as a social and behavioral impairment decouples the experience of autism from a broader social-relational context in which differently disposed (allistic) people with more social power control the standards of normativity in social spaces (Belek, 2019, 233). The social product of this process through which allistic people come to be viewed as normative is known as neuronormativity (Stimpunks, 2024). Western societies often operate with choice-based friendship economies (Fein, 2015, 233) where routine exclusionary practices consistently favor the social success of privileged and neuronormative identities (Belek, 2019, 233). In such exclusionary settings where non-autistic modes of communication and relationality are deemed as normative, it is expected that autistic individuals, whose neurotypes are in the minority, will face social discrimination (Belek, 2019, 233). Social ostracization from discrimination as a result compounds the “social deficits” of autism by creating relational trauma and limiting the amount of opportunities autistic people have to build relational skills (Fein, 2015, 237). The social defects of autism are distinctly relational, they always require two people, an autistic person and a second, more socially powerful person, who sees difference and deficit in the first (Belek, 2019, 233). Autism, in other words, is not simply located in the brains of individuals, rather the experience of autism is relational and situated within dominant conceptions of neuronormativity and sociality (Belek, 2019, 233). Designed with such biosocial critiques in mind, health interventions that seek to improve the lives of autistic individuals could shift away from pathologizing autistic behavioral expression and move towards dismantling discriminatory social forces of neuronormativity.

Neuronormativity is rife in both biomedical and social attitudes regarding conditions that impact cognition and behavior (Stimpunks, 2024), making the presence of biosocial analysis critical to enhancing the health outcomes of individuals with marginalized neurotypes. Dementia is such a case where otherizing social narratives of neuronormativity and ableism slip into biomedical framings of the disease. Biomedical discourse often speaks of dementia exclusively in terms of deficit and dysfunction (Ward and Price, 2016, 14; Kontos and Martin, 2013, 285), with psychological literature compounding this framing by focusing on the “loss of self” experienced by patients with dementia  (Boyle, 2014, 1131). Yet this frame of deficiency and loss of self is highly contingent upon cultural politics of memory, which frame memory and cognitive ability as integral to a person's humanity (Baril and Silverman, 2022, 126). Dementia scholars, Richard Ward and Elizabeth Price put forth a theory of neuronormativity to illuminate how these phrasings of dementia in terms of deficit and loss of self are used to justify the mistreatment of individuals with dementia whose body-minds diverge from social norms (Baril and Silverman, 2022, 120; Ward and Price, 17). While the physical impairment of dementia is biological, the painful psycho-emotional dimensions of the illness are linked with the social death individuals with dementia suffer as a result of their cognitive impairment being framed as a loss of their selfhood (Bartlett, 2014, 1301; Birt et al., 2017, 200). Individuals diagnosed with dementia report feeling terrified of showing signs of their illness around others due to the social ostracization that often accompanies displays of cognitive decline and senility (Bartlett, 2018, 1300). These social forces of dehumanization lead to cases, such as those observed by anthropologist Natashe Dekker, where two daughters contemplate withholding a flu vaccination from their mother in hopes that she will catch the flu and die faster (Dekker, 2018, 325). They see their mother’s life as undignified due to her cognitive state and thus feel driven to facilitate her death without her consent (Dekker, 2018, 325). As Farmer aptly reminds us, structural violence, in this case neuronormativity, ableism, and ageism (Quinn and Mahler, 2021, 993), reconfigures violent acts, such as withholding healthcare, as moral and in service of conventional norms  (Farmer, 2004, 318). As social scientists then, it becomes our job to challenge the systemic violence of neuronormativity, ableism, and ageism (Quinn and Mahler, 2021, 994) by illuminating the dehumanizing ideologies that normalize such treatment of disabled populations. 

One such challenge to hegemonic narratives about dementia is Janelle Taylor’s autoethnography where she recounts spending time with her mother who has dementia (Taylor, 2008, 33). Her moving autoethnography illuminates how love, personhood, and connection are not contingent upon a person’s cognitive abilities (Taylor, 2008, 31). Where biomedicine has failed to tend to the social dimensions of dementia, dementia scholars have used social science to put forth conceptualizations of personhood inclusive of the capacities and lifeworlds of people with dementia (Dekker, 2018, 324). Critical social science research in this tradition has highlighted the communicative modes of dementia, a finding that has tangible clinical applications by showing ways dementia patients can express agency and preference to their caretakers without the use of language (Boyle, 2014, 1140). Social scientists in this way are already finding ways to resocialize the discipline of dementia research in order to create more humane treatment for people with dementia.

As the case studies of race, autism, and dementia in biomedical settings show, a social science perspective is critical to remedying discriminatory medical practice and addressing the social dimensions of illness experience to create a more robust field of public health. Attempting to downscale everything to genetic and biological explanations, the micro-myopia of biomedicine forgoes the macro contexts that inscribe themselves upon bodies and health outcomes (Seeberg et al., 2020, 12). The remedy to such myopia, Farmer reminds us, is the collaboration of biology and social science (Farmer, 2019, 9). Without a biosocial analysis of disability and illness experiences, biomedicine risks enabling medical discrimination and essentializing discriminatory narratives of difference that obscure the social origins of health inequalities. Particularly during a period where the science of epigenetics increasingly shows the malleability of nature and culture (Niewöhner, 2020, 49) biosociality reminds us that tending to social inequalities is integral to the field of public health. We can no longer study biology and culture as though they were separate entities, particularly as epigenetics rapidly unravels the ontology of biodeterminism (Napier, 2020, 98). As such we must take up Farmer’s call to resocialize the discipline of biomedicine (Farmer, 2019, 9), to bring into relief how inequalities shape health outcomes and in doing so create a more robust field of public health that combats, rather than perpetuates, social inequalities.

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