Jones G. Defunding the social production of ignorance: Addressing racism in research begins with funders. Harvard Public Health Review. 2021; 30.
Researchers and funders have increasingly built racial health equity into their agendas, either as one-off programs, or integrated as explicit areas of focus. However, many funders fail to explicitly theorize and contextualize racial health disparities as products of racism, and set poor examples for integrative collaboration with affected communities of color. Failures of discipline and critical examination such as these can blunt efforts at ameliorating racial health disparities, or even exacerbate the health outcomes gaps between racial strata.
This piece argues that funders should explicitly name and define race and racism, leverage anti-racist research, expertise, and lived experience, and integrate impacted community actors to hold equal power to direct, contribute to, and benefit from health equity funding and research.
“There is nothing inherently wrong with you.” On April 10, the US Surgeon General, Jerome Adams, spoke to “people of color” in a nationally televised address about the Covid-19 crisis (Adams, 2020). But, despite presumably best intentions to promote a level-headed public health solution to the already-apparent disparities in Covid-19 burden for Black and brown people in the United States, Dr. Adams ended up perpetuating a harmful trope. He ignored racism’s effect on health, and instead laid responsibility for the disproportionate suffering on the shoulders of the “communities of color,” themselves. Noted recently, this failure of critical examination is not only rife in public health research and practice, but also present as early as the funding systems through which this work is often financed.
To begin to unravel the issue, one must first assert that race is a social, rather than biological, construct, that captures the impact of racism (Chavez et al., 2008, p. 92). Across the backdrops of Enslavement, Abolition, Segregation, Civil Rights, and the New Jim Crow, the freedom movements for Black liberation have eked out progress towards equity—in one form or another—over the past 400 years; since 1619, when the first boat arrived in America with enslaved Africans as its cargo. More recently, the Black Lives Matter movement was coalesced in 2013 as a response to the increasingly undeniable—primarily because they were filmed and released publicly—police killings of innocent black people in America. Broadly under this banner, over the last 8 years, calls for racial justice have increased the attention on anti-Black racism as a structural determinant of many health inequities in the United States. Along with those calls, researchers and funders have increasingly built racial health equity into their agendas, either as one-off programs, or integrated as explicit areas of focus for their portfolios (Health Affairs GrantWatch, 2018).
At the time of his press conference, just one month into the pandemic, the Surgeon General was responding to the racial disparities in morbidity and mortality of Covid-19 that were just coming into clear view. Dr. Adams asserts that he does “not think people of color are biologically or genetically predisposed to get Covid-19.” And yet, his messaging does not address what does make ‘people of color’ “socially predisposed to coronavirus exposure.” What he telegraphs, instead, is that communities of color are, themselves, to blame; that they must “step up and help stop the spread, so that we can protect those who are most vulnerable.” People of Color, it seems, while afflicted by a “burden of social ills” can pull themselves up by their own bootstraps by avoiding “alcohol, tobacco, and drugs” (Adams, 2020)—paternalistic prescriptions that he and the administration presumed to make to no other category of people during the pandemic.
A political appointee, the role of the Surgeon General is naturally beholden to political forces. Justin Feldman, a social epidemiologist at the Harvard FXB Center for Health and Human Rights, explains a neoliberal-oriented calculus Dr. Adams therefore may have been making in his position: “Blaming social gatherings is politically convenient — it requires no restrictions on the power of business owners” (J. Feldman, 2021). Whatever the justification for the Surgeon General’s mischaracterization, after a brief media outcry,(Aleem, 2020) the pandemic continued to rage, and the news cycle simply moved on. Fast-forward to nearly one year later, and it is no surprise that it is the “hesitancy” of BIPOC communities to vaccinate against COVID-19—rather than their lack of access to public transportation, internet, supportive employment policies, and trustworthy medical care—is the new buzzword of the moment.
Dr. Adams’ message is not the byproduct of political forces, alone, however. It is also the output of chronic incuriosity about racism in research and academic publication. Last July, Dr. Rhea Boyd et al published an objection to the routine failure of “preeminent scholars and the journals that publish them,…to interrogate racism as a critical driver of racial health inequities” (Boyd et al., 2020). The impact of such shallow treatment of observed racial disparities, Boyd et al argue, is a useless at best, harmful at worst, ‘diversity’ for diversity’s sake. In this game of talking about racism without uttering the word, race and ethnicity tables become table-stakes, and are only theorized incidentally—if at all—after the study is complete. “This practice,” Boyd et al. caution, “undertheorizes racism as a clinically relevant cause of poor health and underelaborates solutions to racism as a health intervention” (Boyd et al., 2020). When Dr. Adams was admonishing People of Color back in 2020, he was merely inferring the logical endpoint of a longstanding campaign of “medicine’s privileged gatekeepers,” the elite health journals that have eschewed (or even censored) critical examination of racism–what health researchers Nancy Krieger et al call the “scientific production of ignorance” as guided by the hands of white establishment academics (Krieger et al., 2021; Wyatt, 2021).
Not unlike female-identifying characters in Hollywood narratives, racial disparities occupy an uncanny valley in health research: They are simultaneously visible, yet silent; obvious, but only sometimes acknowledged—and rarely addressed with any seriousness. To whit, Boyd et al emerged a kind of ‘Bechdel Test’ (Bechdel, 1986, p. 22) for the explicit treatment of racism. The authors proposed strategies for researchers, journals, and reviewers to evaluate and address the shortcomings of research on racial health disparities: Explicitly name and define race and racism, and leverage the ample research, expertise, and lived experience available to treat the issue of racism and its impacts with seriousness. Importantly, they also encourage individual actors to intervene in the process and hold accountability if these criteria aren’t being met (Boyd et al., 2020).
Multi-level theorization of the impacts of structural racism are critical to observing and effectively responding to the resulting health disparities. In their comprehensive Lancet piece on “Structural Racism and Health Inequities in the USA: Evidence and Interventions,” Zinzi Bailey et al assert a holistic, multi-level model of Structural Racism, which encompasses Internalized, Interpersonal, and Institutional racism (Bailey et al., 2017). Similarly, rather than just looking downstream of the research process—i.e., at analysis and publication—critically important is the aegis under which interventions and research purportedly on health equity are embarked.
Formal research is expensive, and rarely happens absent external funding. It is important, therefore, to understand decisions about how and where to invest public and private dollars into the study of interventions for health equity. The allocation of funding is hugely consequential to the direction of later paths of research, theorization, and innovation;(Mazzucato, 2018) no less so than in health equity research, which still only occupies a minute portion of the total funding made available for health research every year. Because of this, along with scientists, journalists, and elected officials, funders, too, are “responsible for defining and responding to the public discourse” (Bailey et al., 2017, p. 1453) about racism and racial health disparities. Despite this, even a nominal search for requests for proposals (RFPs) targeting “Health Equity” in a number of states demonstrates how the lack of explicit treatment of racism begins even before research and interventions are embarked upon. By googling “health equity funding opportunity,” as a researcher would do to identify opportunities for funding, one can easily find many public and private programs and opportunities (totaling over $5 million of funding on the first page of results, alone; Search performed on key terms “[health equity funding opportunity]” via Google search engine March 23, 2021.) for health equity research, (Kansas Health Foundation, 2017; (Cigna Foundation, 2021) as well as two “best practice” toolkit resources for health equity grant development (Rhode Island Department of Health, 2021; Olmsted, 2019). All require researchers to report on race and ethnicity, but the majority fail to explicitly mention “racism” or its variants. One lengthy guide issued in 2018 by the Association of State and Territorial Health Officials explicitly on “Guidance for Integrating Health Equity Language Into Funding Announcements” includes the words ‘Structural Inequities” but fails to mention “racism” once (Association of State and Territorial Health Officials, 2018). Two private foundations’ health equity RFPs, in lieu of attempting their own justification, helpfully recommend applicants refer to their community’s health needs as reported by the County Health Rankings (CHR) group. The CHR model, explains a cheery video on the group’s website, “helps us see all the factors that impact health and understand where we can take action so that everyone thrives” (County Health Rankings, 2021). The idea of racism, however, is only reflected several layers down in sub-measures of “housing segregation.” Despite much of its data is broken out by race and ethnicity, furthermore, these strata are explicitly excluded from the overall county rankings. By acknowledging racial disparities, but not racism, the funder ecosystem appears to imply with a shrug that racial disparities simply…happen. But “race,” explains the writer Ta-Nehisi Coates, “is the child of racism, not the father” (Coates, 2015, p. 7). If race is a salient factor in disparities, so too is racism.
Exceptionally, some funders have made racism an intentional target of their health equity efforts. Major initiatives out of the National Institutes for Health (U.S. Department of Health and Human Services, 2021)and Robert Wood Johnson Foundation (2020) demonstrate cogent recognition of, and attention to, racism in their conception of disparities they seek to ameliorate through their funding. Other programs without similar institutional resources explicitly committed to racial health equity indirectly acknowledge racism by including links to the in-depth treatment of racism by these larger efforts.
Naturally, lack of mention in the RFP doesn’t mean that research and work on racism cannot be funded. Increasingly, it is; though many are limited to viewpoints and commentaries rather than empirical studies of racism and its effects (Krieger et al., 2021, Exhibit 1). but RFPs are prominent signaling devices for any funder’s appetite to invest in certain types of work over others. They’re often pored over for clues like tea leaves by potential bidders looking to see what kind of research will likely to be favored with money.
The field of Public Health research has long suffered from a lack of formalized curiosity around race power dynamics in its research. In fact, Public Health’s history is a particularly cruel one, with a long record of advancing eugenics and other racist theories of disease distribution (Krieger, 2011, p. 152). Many of these—for instance, forced sterilization in sanitaria and other carceral settings, and the infamous Tuskegee experiments—were cruelties inflicted directly on BIPOC and immigrant communities by well-intentioned white supremacist public health researchers in the name of ‘science.’ More recently, one way Public Health researchers have attempted to reconcile with this history is by adopting Community Based Participatory Research (CBPR) methods in their research. CBPR is an approach that emphasizes “collaborative, equitable partnerships in all phases of the research” in order to “promote co-learning and capacity building among partners” (Israel et al., 2012, p. 28) in ways that meaningfully reverse the Academy’s normal practice of extractive and damaging science. In CBPR, representation is just the start of a mutually-invested relationship. CBPR sees just and valid research as the outcome only of equal and engaged partnership between the ‘researchers’ and the ‘researched.’ CBPR “creates and nurtures structures to sustain partnerships through constituency building and organizational development” (Israel et al., 2012, p. 27). As such, much of a CBPR research project involves negotiating and re-negotiating an agenda based on a common framework on goals, resources, and mechanisms for change. In this way, by addressing the structural barriers present between the often-white, privileged researchers and BIPOC communities they study, CBPR becomes a methodology for exposing positionality and balancing an otherwise asymmetric power relationship. So, too, by acknowledging racist structures in the context of a grant program and incorporating the affected communities into their practice as “co-sponsors” of health equity investments, funders may start to redress the power imbalances that prevent BIPOC communities from directing and benefitting from health equity research.
The difference between acknowledgement of racial disparities and racism is not a theoretical distinction. Recently, much analysis has been done related to COVID-19 vaccine hesitancy, including the disparately low rates of COVID-19 vaccination for under-represented minority and BIPOC communities. Rather than obstinacy or ignorance, as has been implied by much research on “vaccine hesitancy,” more critical research has demonstrated that structural barriers such as anemic public transportation, insufficient childcare, inhospitable employment, and lack of internet access disproportionately affect BIPOC communities who are overrepresented as “essential workers” during the pandemic (N. Feldman, 2021). Throughout the pandemic, racist economic and occupational policies ensured that, although the work being done by Black and brown people was treated as “essential,” the lives and health of those workers decidedly were not. Boyd et al also have a warning as salient now for COVID-19 vaccinations as it was almost a year ago for COVID-19 testing and treatment: “Any mistrust Black patients may harbor toward the US health care system is a result of their never-ending mistreatment, not the cause of it. Suggestions otherwise essentially posit that trust, not racism, is the primary barrier between Black patients, equitable care, and positive health outcomes. This is simply untrue” (Boyd et al., 2020).
Far from being limited to Surgeon General Adams and the Trump administration, the failure to address structural racism persists and transcends political administrations. The Director of the Centers for Disease Control under the Biden Administration, Dr. Rochelle Walensky, recently doubled-down on the flawed ‘lifestyle’ narrative to justify the CDC’s sudden relaxation of mask-wearing guidance. In an interview on May 15, 2021, before even the majority of the country (who only became eligible for vaccination April 19th) could conceivably become fully vaccinated, the head of the federal agency responsible for the collective health of Americans explained simply that “if you’re not vaccinated, that, again, is taking your responsibility for your own health into your own hands” (Walensky, 2021).
The United States’ longer-term recovery from the Covid-19 crisis, indeed, the prospects of healing the racial health disparities that are predominately the fruits of its settler colonial and slave industry origins, will require commitment and collaboration from funders, for whom racism and the communities impacted by it must be explicitly integrated into their agenda.
Adams, J. (2020, April 10). “Do it for your big momma”: Surgeon Gen. on coronavirus safety measures. Reuters One News Page. https://www.onenewspage.com/video/20200410/12977445/Do-it-for-your-big-momma-Surgeon.htm
Aleem, Z. (2020, April 11). The problem with the surgeon general’s controversial coronavirus advice to Americans of color. Vox. https://www.vox.com/2020/4/11/21217428/surgeon-general-jerome-adams-big-mama-coronavirus
Association of State and Territorial Health Officials. (2018). Guidance for Integrating Health Equity Language Into Funding Announcements. https://www.astho.org/Health-Equity/Guidance-for-Integrating-Health-Equity-Language-Into-Funding-Announcements/
Bailey, Z. D., Krieger, N., Agénor, M., Graves, J., Linos, N., & Bassett, M. T. (2017). Structural racism and health inequities in the USA: Evidence and interventions. The Lancet, 389(10077), 1453–1463. https://doi.org/10.1016/S0140-6736(17)30569-X
Bechdel, A. (1986). “The Rule.” Firebrand Books.
Boyd, R., Lindo, E., Weeks, L., & McLemore, M. (2020, July 2). On Racism: A New Standard For Publishing On Racial Health Inequities. Health Affairs Blog. https://www.healthaffairs.org/do/10.1377/hblog20200630.939347/full/
Chavez, V., Duran, B., Baker, Q. E., Avila, M. M., & Wallerstein, N. (2008). The Dance of Race and Privilege in CBPR. In Community-based participatory research for health: From process to outcomes (pp. 91–104).
Cigna Foundation. (2021, March 22). Grants to Reduce Health Disparities. https://www.cigna.com/about-us/corporate-responsibility/cigna-foundation/health-and-well-being-grants
Coates, T.-N. (2015). Between the world and me. One World.
Robert Wood Johnson Foundation (2020). Community Solutions for Health Equity. https://www.rwjf.org/en/library/funding-opportunities/2020/community-solutions-for-health-equity.html
County Health Rankings. (2021). How Healthy is your County? County Health Rankings & Roadmaps. https://www.countyhealthrankings.org/county-health-rankings-roadmaps
Feldman, J. (2021, January). Coronavirus Is an Occupational Disease That Spreads at Work. Jacobin Magazine. https://jacobinmag.com/2021/01/covid-19-business-work-public-health
Feldman, N. (2021, April 26). Why Black And Latino People Still Lag On COVID Vaccines—And How To Fix It. WBUR. https://www.wbur.org/npr/989962041/why-black-and-latino-people-still-lag-on-covid-vaccines-and-how-to-fix-it
Health Affairs GrantWatch. (2018). Funders’ Support Of Health Equity. Health Affairs, 37(3), 508–509. https://doi.org/10.1377/hlthaff.2018.0088
Israel, B. A., Eng, E., Schulz, A. J., & Parker, E. A. (2012). Methods for Community-Based Participatory Research for Health. John Wiley & Sons, Incorporated. http://ebookcentral.proquest.com/lib/harvard-ebooks/detail.action?docID=918182
Kansas Health Foundation. (2017, February). Health Community Initiative: Improving Health Equity in Kansas (RFP). https://kansashealth.org/wp-content/uploads/2017/03/HCI-Health-Equity-RFP-4.pdf
Krieger, N. (2011). Epidemiology and the people’s health:theory and context. Oxford University Press.
Krieger, N., Boyd, R., De Maio, F., & Maybank, A. (2021, April 20). Medicine’s Privileged Gatekeepers: Producing Harmful Ignorance About Racism And Health | Health Affairs Blog. https://www.healthaffairs.org/do/10.1377/hblog20210415.305480/full/
Mazzucato, M. (2018, December). Why we need to re-imagine health innovation. UCL Institute for Innovation and Public Purpose. https://medium.com/iipp-blog/why-we-need-to-re-imagine-health-innovation-51f920e36d7e
U.S. Department of Health and Human Services. (2021). National Institute on Minority Health and Health Disparities. National Institute of Minority Health and Health Disparities. https://www.nimhd.nih.gov/.
Olmsted, M. (MDH). (2019). Grant RFP Equity Examples and Resources. 1.
Rhode Island Department of Health. (2021). Rhode Island’s Health Equity Zone Initiative. https://health.ri.gov/rfp/HealthEquityZones2021.pdf
Walensky, R. (2021, May 13). CDC director on mask guidance for the fully vaccinated, unvaccinated and immunocompromised [Interview]. https://www.pbs.org/newshour/show/cdc-director-on-mask-guidance-for-the-fully-vaccinated-unvaccinated-and-immunocompromised
Wyatt, R. (2021, April 5). The health-care industry doesn’t want to talk about this single word. Washington Post. http://www.washingtonpost.com/opinions/2021/04/05/health-care-racism-medicine/
Griffin Jones (he/his) is a Doctor of Public Health (DrPH) student at the Harvard T.H. Chan School of Public Health and has committed his career to scaling innovations aimed at improving the health of marginalized populations. Most recently, Griffin served as the Interim Director of Strategic Investment at the Massachusetts Health Policy Commission (HPC). Originally from Portland, Maine, Griffin also holds a BA in International Relations from The College of William and Mary in Williamsburg, Virginia, and a Masters in Public Policy and Management from the Muskie School of Public Service.