The Levy Library Blog

Levy Library's Research Insider Provides Multiple Perspectives on the Reporting and Interpretation of Race in Research

By Rachel Pinotti, Director, Library Education & Research Services

The latest installation in The Levy Library’s Research Insider Series, It's Not So Black and White: Race, Health Disparities, and How We Report Them, explored how to balance concerns about the irresponsible use of race in clinical research with the very real need to capture this information in order to work towards the elimination of health disparities.  Four presenters, representing various stakeholders, including funding agencies, journal publishers and individual researchers, grappled with these issues in interesting and thought provoking presentations.

Dr. Eliseo Pérez-Stable, Director of the NIH’s National Institute on Minority Health and Health Disparities, led off with a presentation that laid out some of the foundational information on race, ethnicity, and class-based health disparities.  Citing several landmark publications, Dr. Pérez-Stable laid out the very real, often stark health disparities exist among different racial and ethnic groups in the United States.  Underscoring the urgency of the issue, Dr. Pérez-Stable shared data on the racial and ethnic disparities in COVID-19 mortality. He also outlined the ways in which racial inequity can have real, lasting health consequences for those who are exposed to chronic racism and discrimination.

Dr. Sri Devi Narasimhan, Deputy Editor of Cell, gave a stimulating presentation on diversity and inclusion efforts at Cell Press, both on the pages of the journals themselves and within the Cell Press organization. The heart of Dr. Narasimhan’s argument is that representation very much matters and that the organization is working to improve representation of racial and ethnic minorities both among Cell authors and Cell editorial staff.

Presentation given by Dr. Sri Devi Narasimhan

Next Rear Admiral Richardae Araojo, Associate Commissioner for Minority Health and Director of the Office of Minority Health and Health Equity at the U.S. Food and Drug Administration (FDA), detailed her  office’s efforts to advocate for more diverse representation in clinical trials through FDA guidance documents, public meetings, and the FDA’s Drug Trials Snapshots program.

Our own Dr. Emma Benn, Associate Dean for Faculty Well-being and Development and an Associate Professor in the Center for Biostatistics and Department of Population Health Science and Policy at the Icahn School of Medicine at Mount Sinai (ISMMS), represented the researcher viewpoint.  In Dr. Benn’s fascinating presentation, she introduced the concept of “circular slump,” in which researchers develop and work to prove hypotheses on whether there is a racial/ethnic difference in the risk of disease between two groups which, even when proved, do not get any closer to solving the problem and in fact may unintentionally reinforce the notion that differences are due to race, rather than social factors. Dr. Benn urged attendees and the wider research community to, “move from descriptive statistics to an inferential approach, grounded within the potential outcomes framework that informs interventions” to take a step forward towards developing interventions eliminate health disparities.

Presentation given by Dr. Emma Benn

Interestingly, many of the speakers touched on the theme of looking within.  Rear Admiral Araojo spoke of her office’s to raise awareness about matters related to minority health and health equity not just externally via outreach and social media efforts, but also internally via training for the FDA workforce.  Dr. Narasimhan spoke of audit of editorial staff which revealed a lack of diversity among Cell Press’s operations and editorial staff and how they are planning to address it. Speaking of a, “culture of inferiority,” Dr. Pérez-Stable issued a powerful caution to attendees to remember that, “…it exists, not only out there in society, but also in our institutions….our academic institutions as an organized system that categorizes, ranks, devalues and disempowers and allocates resources accordingly.”

A sincere and heartfelt thanks to all of our speakers, as well as our ISMMS student collaborators, Paulos Mengsteab and Kevin Weiss, whose original idea served as the genesis for the event and who moderated the Q&A discussion portion of the seminar.  Thanks, too, to the Mount Sinai Media Services team who assisted with the webinar.

Want to hear more?  A full recording of the event is available on our YouTube Channel.

Presentation slides can be found here.

Selected Bibliography

Below please find a selection of the articles highlighted by speakers during the event:

• Benn EK, Goldfeld KS. Translating context to causality in cardiovascular disparities research. Health Psychology. 2016 Apr;35(4):403.
• Borrell LN, Elhawary JR, Fuentes-Afflick E, Witonsky J, Bhakta N, Wu AH, Bibbins-Domingo K, Rodríguez-Santana JR, Lenoir MA, Gavin III JR, Kittles RA. Race and Genetic Ancestry in Medicine—A Time for Reckoning with Racism.
• Bryson B. What Needs to Change in Academia to Increase the Number of Black Scientists and Engineers? Cell Syst. 2020;11:5-8.
• Burchard EG, Ziv E, Coyle N, Gomez SL, Tang H, Karter AJ, Mountain JL, Pérez-Stable EJ, Sheppard D, Risch N. The importance of race and ethnic background in biomedical research and clinical practice. New England Journal of Medicine. 2003 Mar 20;348(12):1170-5.
• Hooper MW, Nápoles AM, Pérez-Stable EJ. COVID-19 and racial/ethnic disparities. JAMA. 2020 Jun 23;323(24):2466-7.
• Kaufman JS, Cooper RS. In search of the hypothesis. Public Health Reports. 1995 Nov;110(6):662.
• Saif S. Rathore, Harlan M. Krumholz. Race, Ethnic Group, And Clinical Research: Implications Of Incorporating Race And Ethnicity Into Trials Go Beyond Ethical Issues. BMJ: British Medical Journal. 2003;327(7418):763–4. 
• Stevens KR, Masters KS, Imoukhuede PI, Haynes KA, Setton LA, Cosgriff-Hernandez E, Bell MA, Rangamani P, Sakiyama-Elbert SE, Finley SD, Willits RK. Fund black scientists. Cell. 2021 Jan 26.
• Stephenson J. FDA Offers Guidance for Boosting Diversity in Clinical Trials. JAMA Health Forum 2020 Nov 2 (Vol. 1, No. 11, pp. e201434-e201434). American Medical Association.
• Templeton AR. Biological races in humans. Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences. 2013 Sep 1;44(3):262-71.