Grappling with how health disparities research could yield detrimental outcomes for those very populations deemed to be “underrepresented” or “marginalized”

“Without the cooperation and input of doctors and health officials, the CDC would never have understood the full range of this disease, even after the implementation of regulations making it mandatory to report AIDS diagnoses. Through this reporting mechanism, most of the initial cases classified by the CDC as AIDS or GRID were among gay men…Members of other groups facing HIV and AIDS were often underrepresented in the initial data of the CDC due to their lack of access to adequate medical care. Injection drug users, poor women, and other economically marginal people at behavior risk for AIDS rarely saw the same doctor twice.” (Cohen p128-129)

Cohen’s work, The Boundaries of Blackness, on how the portrayal of the AIDS epidemic in the African American population by the press, researchers, and activists trivialized the plight of certain subgroups of people within the population really made me think about my own academic interests related to health inequities. Although Cohen seems to, at this point, be focusing on barriers to accessing health care services as the major cause of existing health disparities, she alludes to the current push to address socioeconomic determinants of health in health disparities research and advocacy near the end of her work. Such a focus is now present in many of the curricula of academic public health programs across the nation, such as in the University of Michigan School of Public Health as evident in the video clip below:

Legislation that disproportionately harms people of color, such as those that discourage black and Latino/a drug users from using “hypodermic needles and syringes” even though they could “possibly save your life”, poor housing conditions, limited capacity to purchase healthier food alternatives, and so forth are increasingly acknowledged as major factors that exacerbate health disparities (Cohen p127).

However, a dilemma that I was left with when reading this work was how exactly researchers and activists could work toward ensuring that populations, which are historically marginalized and/or underrepresented in medical care, are sufficiently included in clinical research without either reinforcing totalizing and potentially adverse depictions of social categories or constructing “biomedical differences” as the defining means to differentiate between such categories. On the one hand, as Steven Epstein points out in his work entitled Inclusion: The Politics of Difference in Medical Research, “The program for inclusion of previously underrepresented groups in biomedical research reflected more than a desire for ‘representation’ in a purely statistical sense: it also suggested a demand for political representation and for inclusion in the polity and society more generally.” (Epstein 21).

Yet, on the other hand, focusing solely on race or sex contributes to the essentialization of these social categories, rendering alleged biological commonalities as the primary source of one’s personal identity. It also fails to address the historical tensions of targeting certain populations for clinical studies that coincide with those exploited by researchers in the past, such as women of color who were disproportionately subject to forced sterilizations or the infamous Tuskegee study that permitted African American males to continue suffering from untreated syphilis. How could the researcher possibly reestablish trust in figures of medical authority among such populations after such flagrant ethical violations in the recent past? And could proponents of such targeted inclusion of certain populations in clinical studies realistically assert that a long-term consequence would be greater social equality even though such research in the past had been used to justify a “natural”, or supposed biologically substantiated, hierarchy of people which manifested in claims to “white racial supremacy”, for instance?

The solution for both Cohen and Esptein appears to be dismantling conventional social categories when conducting clinical research or public health advocacy. Near the end of her work, Cohen asserts that, “Cross-cutting issues like AIDS necessitate a political strategy which is not driven by simple identity politics…They necessitate, instead, a political analysis that makes central the differential interests that define the complex politics of black communities” (Cohen 292). Such an “intersectional” approach to addressing health disparities is similarly championed by Epstein. What I still have difficulty understanding is how exactly such an approach would pragmatically play out. Social identities, such as race, continue to be identities that people have historically galvanized around when striving to redress social injustices. Would interjecting nuances and complexities with factors such as variations in socioeconomic status impede the necessary formation of political consensus? How exactly do you draw that balance between mass mobilization of the community based on a common cause and precluding the formation of specious consensus that actually reinforces the hegemony of elites and renders those deemed to be “socially deviant”, such as drug users, as invisible in mainstream political discourse and public policy making?


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