In 'Inclusive' Cancer Research, Beware of Reinforcing Incorrect Perceptions on Race

Lori J. Pierce, MD


May 07, 2021

America's biomedical research establishment is in the midst of a reckoning on racial justice. Having witnessed the devastation of COVID-19 in Black and other minority communities, researchers are being pressed to confront the long-standing inequities that pervade our field.

It is new territory for many, and pitfalls of language and history abound.

ASCO President
Lori J. Pierce, MD

Low minority enrollment in clinical trials is especially important. In cancer research, only about 5% of trial participants are Black, even though Black people make up more than 13% of the US population. Insurance and financial barriers, provider biases, lack of awareness of clinical trials, and an understandable mistrust of a medical research establishment based on a history of mistreatment all contribute to this gap.

To fix the inequity in research participation, the American Society of Clinical Oncology and other organizations are pushing hard to increase access to clinical trials for Black, Hispanic/Latinx, and other minority patients with cancer.

The momentum is both welcome and overdue. If we harness it effectively, we will deliver better outcomes for patients in every community. But with our resolve comes the responsibility to speak with great care and precision about the motivations behind our work.

Careful language matters because race is a fraught concept. It is a purely social invention that, nonetheless, is associated with enormous differences in health. Cancer researchers are not, by and large, experts on race or history or sociology. Even the most thoughtful of us run the risk of reinforcing entrenched beliefs about race if we are not careful in the language we choose.

Human beings are 99.9% identical in our genetic makeup, and very little of the tiny genetic variation between people can be attached to racial differences. Black people in America, for example, encompass people as diverse as the descendants of slaves from West and Central Africa, recent immigrants from all regions of Africa and the Caribbean, and the fast-growing population of people who identify as multiracial.

Race is, however, very real as a category for the sorting and oppression of people. After centuries of strict and often violent reinforcement, Americans tend to believe that race is far more biologically significant than it really is. More than half of the US public believe that their racial identity is "determined by information contained in their DNA."

In biomedical research, we inadvertently reinforce that perception — or at the very least, fail to dispel it — when we are not extremely clear about the reasons for pursuing diversity in research.

As an example, a common argument for inclusive research goes something like this: "With more representative trial populations, we can better understand how well cancer treatments work in different racial groups." It is not an inaccurate idea, but it lacks context about the reasons a treatment might have different outcomes. Given the pervasiveness of false beliefs about biology and race, the statement can inadvertently validate those ideas. After all, the thinking goes: If race were not "real," why would scientists seek more people of color to participate in clinical trials?

Researchers can avoid this pitfall by speaking with precision and nuance. More specifically, we should emphasize that these are the reasons we work to increase minority participation in cancer clinical trials:

  • First and foremost, access to clinical trials is a fundamental part of quality cancer care, providing patients with access to standard-of-care therapies as well as investigational treatments that could extend or improve their lives. It is what every patient deserves but has been out of reach for many Black and other patients of color.

  • Second, diversity in clinical trials is necessary to account for the diversity of cancer patients. A small part of that diversity is genetic, reflecting varied geographical roots and family backgrounds, not a category as artificial as race. More common are variations in socioeconomic status, living conditions, education, and other social determinants of health — the levers through which institutional racism continues to affect health outcomes. Clinical trials can tell us definitively when a treatment produces different outcomes in different groups of patients. Then we must work to understand and address the underlying causes so that every patient receives the personalized care they need.

Simply put, race is a category that researchers must carefully work with as we strive for greater diversity in clinical trials. But at best, it is a surrogate for more complex social, geographic, and hereditary factors that influence cancer incidence and outcomes.

As we commit more deeply to health equity, we need to think of diverse clinical trials as an antidote to the effects of racism, not an accounting for race. I urge all of us to speak boldly — but thoughtfully — about this imperative in our efforts to foster more inclusive cancer research.

Dr Lori Pierce is the president of the American Society of Clinical Oncology and a radiation oncologist, professor, and vice provost for academic and faculty affairs at the University of Michigan.

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