AACR forum confronts racism, inequality in research
’We have kept quiet for way too long’
Click Here to Manage Email Alerts
As an oncologist who treats melanoma, Antoni Ribas, MD, PhD, typically views skin color from a strictly scientific perspective.
“I know that skin color is an adaptation of skin melanocytes of our ancestors to different degrees of ultraviolet light exposure, but why does skin color impact our lives and careers?” Ribas, president of the American Association for Cancer Research, said during a session on racism and inequality in cancer research presented as part of AACR’s Virtual Annual Meeting II. “Today, we will dig into issues about which we have kept quiet for way too long, because it was too difficult or too painful to talk about them.”
The session featured several racially and ethnically diverse leaders in the oncology community and focused on the underrepresentation of people of color in clinical trials, academic training programs and leadership positions. Speakers also discussed the disproportionate burden of cancer among historically underrepresented groups.
“I trust our discussions today will result in new initiatives and policies, not only for AACR but also for the broader scientific community,” Ribas said. “AACR is moving forward with plans for holding a series of forums on this important and timely topic, and to publish informative blog posts and other communications on this subject.”
‘A renewed purpose’
John D. Carpten, PhD, professor and chair of the department of translational genomics at Keck School of Medicine at USC and chair of AACR’s Minorities in Cancer Research Council, discussed the killing of George Floyd in Minneapolis and its psychological effects on the Black community.
He described the weeks following Floyd’s death as emotionally, spiritually and psychologically draining.
“To watch that tragedy occur in broad daylight, with cameras and witnesses, where a white man compresses his knee on the neck of a Black man while the man screams out for his mother and for his life — it really woke me up,” he said.
Carpten, who has dedicated much of his career to narrowing racial gaps in oncology care and research, said the incident made him realize he needed to do more.
“This has forced me to convict myself — I must not have done enough in my life where this type of action could occur the way it occurred,” he said. “There have been a lot of events throughout history, but this one really struck a nerve in me. This was the moment when I said to myself, ‘No matter what I do, no matter what I accomplish in life, the first thing someone will see in me is Black.’”
Carpten said at USC, many of the Black postdoctoral fellows and graduate students are away from their families and often are the only Black trainees in their labs. He said the tragic national events that have occurred have the potential to breed a sense of isolation among these trainees.
“I’ve been doing everything I can to work with others at Keck School of Medicine to ensure that our trainees and our early-stage investigators have the support they need as we move forward,” Carpten said. “I know the Black Lives Matter movement is about police brutality and the killing of Black men, but Black lives should also matter when it comes to health equity. So, I have a renewed purpose and a renewed charge to ensure that that happens.”
Corporate efforts
The underrepresentation of people of color in clinical trials is a well-known and persistent problem in oncology.
Kenneth C. Frazier, chairman and CEO of Merck, discussed the company’s efforts to encourage more clinical trial participation by this population. He said in addition to conducting clinical research in many different countries with diverse populations, Merck supports patient advisory panels, expert input consultations, and other mechanisms to gain insight into what matters to patients and communities.
“Community engagement has been especially helpful — it’s really critical to build trust about the importance and benefits of clinical trials,” Frazier said. “When people don’t see people like them conducting these trials, they’re not so sure whether we’re doing something for them or doing something to them.”
For this reason, Frazier emphasized the need for racial minorities to be represented among the investigators of clinical trials and in community outreach efforts.
“It’s extremely important that we increase partnerships with minority investigators and those who serve communities of color to help improve the diversity of participants in clinical trials,” he said. “This includes not just the patients, but the people conducting the trials, as well.”
Frazier added that community engagement has the potential to make companies aware of existing disparities and to ensure that these disparities are being directly addressed. He cited work the company is doing on maternal mortality.
“In New York City, an African American woman is 10 times more likely to die in childbirth than a white woman,” he said. “It doesn’t matter what level of education they have.
“Lastly, I think we need to expand the opportunities to train and bring people of color into our company,” Frazier said. “If we aren’t diverse ourselves, there’s no way we can serve mankind in its full diversity.”
Narrowing funding gaps
Hannah Valantine, MD, MRCP, chief officer for scientific workforce diversity at the NIH, spoke about the importance of increasing research funding for Black scientists.
“We have a problem with the gap in the funding rates for African American scientists compared with others, throughout the career path,” Valantine said. “But, I think we must always speak to this issue with some hope. If we continue to speak with the despair that all of us are feeling this week, I don’t see how any other of our Black trainees will join us in this work.”
Valantine noted one area of hope: the elimination of racial and ethnic funding gaps in the NIH career development (K) awards. She also discussed two recently launched programs — Maximizing Opportunities for Scientific and Academic Independent Careers (MOSAIC) and Faculty Institutional Recruitment for Sustainable Transformation (FIRST) — that focus specifically on bringing more Black scientists onto the faculties of institutions.
“We’re attempting to change the culture within institutions,” she said. “We will provide funding for the institutions to do that additional work around racism, biases and mentoring. We hope that once that’s disseminated, we will begin to see a big difference.”
Valantine noted that improvements need to be made in R01 grant funding, which continues to reflect racial disparities.
“The R01 is the final elephant in the room,” she said. “We are narrowing the gap, but not nearly as much. What this turn of events has done is to get NIH to look very squarely into how we can rapidly change that gap, immediately if not sooner.”
Broadening trial access
Lola A. Fashoyin-Aje, MD, MPH, medical oncologist and deputy division director in the division of oncology 3 at the FDA’s Office of Oncologic Diseases, discussed efforts the FDA has been making to increase the participation of Black patients in oncology clinical trials.
“We’ve been engaging with a lot of partners, AACR included, as well as ASCO and others, to broaden eligibility criteria in clinical trials, which is an often very problematic barrier for unrepresented minorities,” Fashoyin-Aje said. “Patients really need to be the marathon runner who happens to have cancer and not necessarily the patient who would be receiving the drug post-approval.”
She said the FDA and these partner organizations have been encouraging trial sponsors to adopt clinical trial designs that allow for broader and more inclusive enrollment, even if this means the analysis and efficacy that support approval are based on a more restricted patient population.
“That will give us not only broader access to a trial, but it will also enable us to collect information in the most standardized and controlled fashion for patients who might have more comorbidities,” she said. “There are many experiments happening in the medical oncologists’ offices every day, as they try to figure out how to use a drug that was approved for the marathon runner on the patient who is sitting right before them.”
Fashoyin-Aje added that more clinical trials should enroll patients in Central America, where study participants may have ancestry similar to patients who are underrepresented in U.S. trials.
Fashoyin-Aje also emphasized accountability. She cited a pilot project in which she asked trial sponsors to provide specific plans for enrolling racial and ethnic minorities from sub-Saharan Africa in clinical trials, particularly in diseases in which minorities are overrepresented.
“To be quite frank, the response was disappointing,” she said. “We got very general plans that did not identify targets or how to achieve those targets. I think if we’re going to put action into the commitment we’re making, that needs to change. We need to take bold action in addressing this very dire issue.”