Research, Racism and Bending the Arc in Gynecologic Cancers | Charlotte Gamble, MD, MPH
Racial inequities in cancer outcomes is as American as apple pie. With roots in another deeply American tradition–racial oppression–these inequities permeate every aspect of healthcare delivery. Within gynecologic oncology, we are not immune; Black/white racial disparities are stark and have persisted over time.
It is much easier to point to a discrete set of genetic and individual-level risk factors to attempt to explain these disparities rather than consider systemic racism. Indeed, the latter would require recognition that, as clinicians, we directly contribute to the observed disparities. Yet with evidence demonstrating we consistently deliver sub-standard care to Black women,1 one can hardly argue that p53 mutations are the sole cause of disparate outcomes by race.
As such, the more difficult work lies in recognizing the racism that shapes the Black patient experience and our own biases as researchers and clinicians, then designing interventions necessary to change the system. A necessary starting point is acknowledging the Eurocentric paradigms that have thus far been central to ‘disparities’ work in our field and bring more relevant perspectives to bear on our analyses. With origins in legal studies, the Public Health Critical Race Praxis remains foundational to antiracism research.2 Principles of this Praxis include race as a social construct, the ordinariness of racism, intersectionality, disciplinary self-critique, race consciousness, critical approaches, primacy of racialization, structural determinism, social construction of knowledge, and voice. Without work grounded in an understanding of these principles, we will continue to conflate race with biology as opposed to recognizing the structures of systemic inequities built into our hospitals, clinics, and operating rooms.
Kemi M. Doll, MD, MCSR, in a compelling critique of the literature on endometrial cancer disparities, uses the Public Health Critical Race Praxis to systematically deconstruct the superficial exploration of race as a risk factor for poor outcomes.3 She highlights how factors such as high risk histology, molecular/genetic characteristics, stage, chemotherapy response, treatment, comorbidity, and socioeconomics have all been posited as causes of racial disparities in endometrial cancer whilst noting the conspicuous absence of racism from this list.
Our methodological approaches used to ‘adjust’ for non-clinical patient factors remain wildly inept at accounting for systematic injustices that are not easily quantifiable.4 The perennial ‘residual risk’ that exists for patients who are Black is simply a lifetime of exposure to racial discrimination that databases do not capture.5,6 Earlier this year, Rachel Hardeman, PhD, MPH, described the role of white supremacy in health services research and need for emancipation from this dominant frame of whiteness.7 From asking the research question that is framed often from a standpoint of Black failure, to interpreting the results that attribute disparity to race instead of racism, our current paradigm of “disparities research” in gynecologic oncology perpetuates systems of oppression precisely because it fails to identify structural injustice as a modifiable risk.
We must have more rigorous standards in publishing on health inequities. Rhea Boyd, MD, MPH, in a Health Affairs Blog post this year,8 called for researchers to define race, name and identify the form or racism, solicit patient input, identify the stakes, and cite the experts–especially those of color–who have published in racism and health. She challenges journals to reject articles on racial health inequities that fail to rigorously examine racism, modify publication guidelines to ensure they are contemporary in expressing racism, reimburse and use experienced reviewers. She challenges reviewers to be critical of work that provides genetic base for racial differences, critically review citations, and consult experts. In gynecologic oncology we should expect this quality and rigor for scientific work in our field.
In the paraphrased words of both a civil rights icon and a former US president – The moral arc of the universe is long but it bends towards justice…. And it won’t bend itself.
Opportunities for emancipating our work in gynecologic oncology also include centering the experience of marginalized women in our studies; amplifying their voices through community-engaged and community-led research.9 It includes moving beyond describing disparities towards designing and implementing interventions to eliminate inequity. It necessitates grant funding that incentivizes this work. It requires diversifying our research teams, editorial boards, and clinical practices. And if we must continue to describe various aspects of disparity, we must recognize the racism and eliminate the bias inherent in our cohorts–who is being counted and who is left out? Which 20 percent of American hospitals are not included in the NCDB? Which states do not have SEER registries? Do we know anything about justice-involved (incarcerated) persons who have gynecologic cancer? As a field with deeply flawed history of caring for Black women,10 this is nothing short of a vertical climb.
Charlotte Gamble, MD, MPH, is a gynecologic oncology fellow at New York-Presbyterian/Columbia University Irving Medical Center/Weill Cornell Medical Center in New York City.
This column is sponsored by an unrestricted grant from GSK. Sponsorship excludes editorial input. Content developed by the SGO Diversity, Inclusion & Health Equity Committee.
- Rauh-Hain JA, Melamed A, Schaps D, et al. Racial and ethnic disparities over time in the treatment and mortality of women with gynecological malignancies. Gynecol Oncol. 2018;149(1):4-11.
- Ford CL, Airhihenbuwa CO. The public health critical race methodology: praxis for antiracism research. Soc Sci Med. 2010;71(8):1390-1398.
- Doll KM, Snyder CR, Ford CL. Endometrial cancer disparities: a race-conscious critique of the literature. Am J Obstet Gynecol. 2018;218(5):474-482 e472.
- Jha AK, Zaslavsky AM. Quality reporting that addresses disparities in health care. JAMA. 2014;312(3):225-226.
- Mullins MA, Peres LC, Alberg AJ, et al. Perceived discrimination, trust in physicians, and prolonged symptom duration before ovarian cancer diagnosis in the African American Cancer Epidemiology Study. Cancer. 2019;125(24):4442-4451.
- Bor J, Venkataramani AS, Williams DR, Tsai AC. Police killings and their spillover effects on the mental health of black Americans: a population-based, quasi-experimental study. Lancet. 2018;392(10144):302-310.
- Hardeman RR, Karbeah J. Examining racism in health services research: A disciplinary self-critique. Health Serv Res. 2020;55 Suppl 2:777-780.
- Boyd RW, Lindo EG, Weeks LD, McLemore MR. On Racism: A New Standard For Publishing On Racial Health Inequities. Health Affairs Blog. July 2, 2020.
- Israel BA, Coombe CM, Cheezum RR, et al. Community-based participatory research: a capacity-building approach for policy advocacy aimed at eliminating health disparities. Am J Public Health. 2010;100(11):2094-2102.
- Wailoo K. Historical Aspects of Race and Medicine: The Case of J. Marion Sims. JAMA. 2018;320(15):1529-1530.