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Let's Talk About How We Talk About Race

contributed by Lori Pierce, M.D.

Inclusive clinical trials are a must, and we have to get better at articulating why

Lori Pierce MD stands in front of a fireplace in the Michigan League
Lori Pierce, M.D.

History has its eyes on us.

That was one of the key messages in my presidential address at the 2021 annual meeting of the American Society of Clinical Oncology. Institutional racism is finally being recognized as a societal plague that is devastating to all of us — and as physicians and researchers, we must do more to confront the longstanding inequities that pervade oncology and all of medicine.

I made equity for every patient, every day, everywhere the theme of my presidential year, and championed measures to improve access, lower costs and increase the diversity of our workforce.

Improving the racial diversity of our clinical trials is a vital component of this larger effort. And it’s important for us to speak clearly about why — or risk reinforcing public misperceptions about race.

"Decades of analyses have shown that 'racial groups' are defined by societies, not by genetics," public health geneticist Alice B. Popejoy, Ph.D., noted in a recent Nature editorial. "Only the privileged have the luxury of opining that this is not a problem."

Yet millions of Americans see race as primarily biological in origin rather than as a societal and historical construction. Moreover, white individuals are significantly more likely to believe that racial identity is "determined by information contained in their DNA" than are members of minority communities, according to a national poll by Northwestern University’s Center for the Study of Diversity and Democracy and 23andMe.

This kind of thinking can lead to profound misunderstandings about the nature and causes of racial and ethnic disparities in health outcomes — the kind that we've seen tragically underscored by the COVID-19 pandemic.

That means it’s imperative that we in the oncology community — and the broader medical community — communicate thoughtfully and with nuance as we pursue efforts to ameliorate these longstanding inequalities.

Let's look at Black Americans specifically.

Black people make up more than 13% of the U.S. population and yet comprise fewer than 5% of participants in most cancer clinical drug trials. There are many reasons for this gap — including lack of access, lower rates of insurance, financial barriers and an enduring mistrust of the medical research establishment.

At the same time, for most cancers, Black patients have higher death rates and shorter lengths of survival than members of other racial and ethnic groups, American Cancer Society statistics show.

These disparities need to be discussed and addressed.

Race can be a challenging subject to talk about. And I'm encouraged by how the important and sometimes painful conversations that are currently happening in the halls of medicine are part of a larger reckoning happening across the country on issues of race and justice.

So, when we talk about the importance of increasing racial diversity in our clinical trials, we must be careful not to reinforce false beliefs about race at the same time.

Why do we want to increase the participation in clinical trials among Black,Hispanic/Latinx and other minority patients with cancer?

First and foremost, these populations deserve access to cutting-edge investigational treatments that may improve or extend their lives. It's a fundamental component of high-quality cancer care.

Second, the greater the diversity among clinical trial participants and the better it reflects the overall diversity of our patients, the better we can identify important differences in outcomes between groups.

But let's be clear: Only a small fraction of the difference between racial groups is genetic. At that level, humans are 99.9% identical. Social determinants of health play a far greater role — factors like access to nutritious food, economic stability, safe housing and neighborhoods, education and job opportunities, and exposure to environmental pollution.

Race is a cultural category through which we can see the history of these factors at play. And they are the levers by which institutional racism continues to affect health outcomes.

"The causes of these inequalities are complex and reflect social and economic disparities and cultural differences that affect cancer risk, as well as differences in access to high-quality care, more than biological differences," the ACS's Cancer Facts and Figures for African Americans 2019-2021 appropriately notes.

So, if we simply state to the public that we want to increase the diversity of clinical trial populations to better understand how well treatments work or don’t work for different racial groups, we do a disservice. While that is true at a surface level, it is not the whole truth.

Ultimately, increasing diversity in clinical trials is not meant to provide a better accounting of racial differences, but rather to provide an antidote to years of structural racism.

This is the message I urge all of us to convey — boldly, yet thoughtfully — as part of our ongoing commitment to health equity.

Lori J. Pierce, M.D., is professor of radiation oncology at Michigan Medicine and vice provost for academic and faculty affairs at the University of Michigan. She served as the 2020-2021 president of the American Society of Clinical Oncology.,

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