The Role of Race in Biomedical Research

Lachelle D. Weeks, MD, PhD
Physician-scientist at Harvard Medical School and Dana Farber Cancer Institute
Gilda A. Barabino, PhD
President and professor of Biomedical and Chemical Engineering at the Olin College of Engineering

This year’s program includes a “Special Scientific Session on Race and Science” that will feature presentations on the construct of race and the implications of racial bias on research and study design. Here, session co-chair Lachelle D. Weeks, MD, PhD, and session speaker Gilda A. Barabino, PhD, preview the discussion.

Why was this topic selected for a special interest session?

Dr. Weeks: Last year’s session on race and science was quite timely given both the racial reckoning in the United States and the increasing awareness of how race is being recognized in biomedical research. We wanted to make sure these topics continue to be part of the conversation at the annual meeting.

What topics will the speakers be discussing in their presentations?

Dr. Weeks: My co-chair, Wally Smith, MD, and I thought it was important to go back to the basic principles of racial equity and its implications on hematology research. We invited two dynamic speakers to discuss these topics. Deirdra Terrell, PhD, co-chair of ASH’s Committee on Promoting Diversity, will discuss the construct of race: What is it race? Is it a genetic, biologic, or social construct? Her goal is to be descriptive about what race is as a variable and what it is not. Dr. Barabino, who is also a member of the Committee on Promoting Diversity and a thought leader on the topic of race, ethnicity, and gender in science, was invited to discuss the implications of racial biases in hematology research.

How is racial bias evident in medical science – from design of trials to the ideas of race as a genetic or biologic construct?

Dr. Barabino: I plan to address this in my presentation, with a discussion of the roots of racial bias in medicine and the myriad ways it plays out in research, ranging from the underrepresentation of racially minoritized groups to limited support for research. For patients of color, racial bias translates to a lack of access to scientific and medical discoveries, technologies, and therapies; compromised treatments; and poorer health outcomes.

Dr. Weeks: Data on how racism manifests in science and medicine have existed for a long time, but the issue is now becoming part of common parlance in the larger society. There is more understanding of the various ways that racial bias and racism influence biomedical research and clinical practice. One example is to think about representation of minorities in clinical trials. In 1993, the National Institutes of Health passed an act that required the inclusion of minorities and women in clinical trials. Looking at data from 1993 to 2019, that mandate has resulted in a huge increase in the number of women included in clinical trials. However, the percentage of minorities enrolled in trials is still less than 12% of the population. We have to continue to try to understand why we haven’t seen increases in recruitment for minorities, despite having the same interventions for women and minorities.

Have other efforts to increase representation of racial minorities in trials and the hematology workforce been successful? What challenges remain?

Dr. Weeks: The ASH Minority Recruitment Initiative is a program designed to provide funding to help people navigate through a hematology career, recognizing that different expenses mean different things to people from different backgrounds. Different people have more or less disposable income and financial responsibility with family.

In terms of recruitment into clinical trials, having legislative bodies mandate inclusion of minorities in studies – or provide a valid explanation as to why they are not included – is important. However, there are several industry-sponsored clinical trials that are not subject to the same regulations. Future work must focus on ensuring that, at the outset, studies consider the impact of racial/ethnic representation as a potential variable of interest and that study findings are applicable to diverse populations.

Dr. Barabino: In my view, the biggest challenge is mistrust of research, research institutions, and investigators, along with mistrust of physicians and health-care providers. As researchers and practitioners, we have a responsibility to build trust and eliminate racial bias. Mistrust has deep historical roots steeped in racism for racially minoritized and indigenous people. The path forward to building trust will not be easy, but success on that path has wide-ranging implications for better representation and improved health outcomes.

What do you hope that attendees will take away from this session?

Dr. Barabino: From my presentation, I hope that attendees gain a better appreciation for the role that racial bias in science and medicine plays in who conducts research, how research is conducted, and who benefits from it. I also want the audience to think about what’s needed to avoid bias and improve study design and outcomes.

Dr. Weeks: The goal of this session is to continue to stimulate conversations about these topics. We need people to feel comfortable sitting with, standing up, and speaking out about ways to implement structural changes. To get there, we have to educate them about the basic principles of what race is, what structural racism is, and the sequelae. This Scientific Session and the anti-racism track that we have at this year’s meeting are a good start. Hopefully attendees can go into their communities and start to implement change.

Special Scientific Session on Race and Science

Wednesday, December 8, 2021,
4:00 p.m. – 4:45 p.m.
Georgia World Congress Center,
Hall C2-C3