Dr. Karriem Watson was introduced to cancer disparities early on.
His mother lost her battle with breast cancer when he was 7 years old. His father, Watson remembers, was tasked with creating a new normal while navigating his own grief.
Throughout Watson’s young adult life, his family grappled with different forms of cancer: colorectal, prostate and breast cancer, again. Genetic testing and family history seemed to be missing talking points, Watson said, from health professionals during a majority of the time cancer appeared in relatives.
African Americans have a higher death rate than other racial ethnic groups for many types of cancers, according to the National Cancer Institute. Black women are more likely to die of breast cancer than white women, and African American men are twice as likely as white men to die of prostate cancer. Black men also have the highest prostate cancer mortality among all population groups in the U.S.
The recurrence of cancer in Watson’s family influenced his outlook on precision medicine and disparity research. He earned a doctorate in health science, a master of science in basic medical research and a master’s in public health.
Watson is now using his own lived experiences to help tackle a nationwide issue: the lack of diversity in clinical research. He is part of a federal program involving grassroots initiatives to build trust among populations underrepresented in medical research and provide a diverse database for researchers to use.
Certain racial and ethnic groups are underrepresented in research. A 2021 study of 230 U.S.-based clinical trials within a nine-year period found that Black or African American, American Indian or Alaska Native, Hispanic or Latino, and older adults were underrepresented.
To help boost participation, health professionals, initiatives and programs are doing more to prioritize diversity in medical research. The U.S. Food and Drug Administration has even released guidelines for promoting diversity in clinical trials to advance health equity.
Dr. Reginald Hill works in a preclinical research space with an emphasis on pancreatic cancer. Human clinical samples play a role in his research. The assistant professor of medicine at University of Southern California said his research lab runs into a problem wanting to help everyone equally who has been diagnosed with cancer. But, medical professionals know that not every race or ethnic group will get pancreatic cancer in the same frequency.
“We really have a lot of problems trying to tease out the effects that ethnicities and other environmental factors might play in this disease,” he said.
For Hill to study any of the genetic factors, he said, he has to have access to those specific samples. And if particular people are not part of tissue banks or blood sample collections, he can never address those specific questions.
“We need more minorities to enroll in clinical trials because their data sets are important,” Hill said.
Watson is the chief engagement officer for the National Institutes of Health’s All of Us Research Program.The research program aims to create a diverse health database of at least 1 million people in the U.S. for researchers to study how biology, lifestyle and environment affect health. The program began enrollment in 2018 and is expected to last for at least 10 years. Participants are from different age groups, races, ethnicities, and areas of the country. Other diverse factors include socioeconomic status, health status, gender identity, sexual orientation, education and disability.
The program doesn’t recruit for clinical trials or give medical treatments. It’s creating an infrastructure, a tool for researchers to have access to a swath of data sets from different demographics of people.
Roughly 466,000 people are registered with the program. At least 321,000 have completed initial steps, including consenting to join the program, choosing to give blood or saliva samples and giving physical measurements and electronic health records. Nearly 80 percent have been underrepresented in biomedical research and at least 50 percent are racial ethnic minorities.
Watson said the program affords participants transparency, which has historically hindered medical relationships with certain racial ethnic groups. Historic medical wrongdoings, poor outreach and accessibility barriers have all been cited as deterrers.
The 1932 Tuskegee experiment promised free medical care to African American men in Alabama for participation in a study of the progression of syphilis, which had no known cure at the time. Researchers did not provide effective treatment for the men as some died, went blind and passed the disease to children.
In 2020, a whistleblower complaint claimed federal immigration detainees underwent unnecessary gynecological surgeries — including full hysterectomies — without their consent.
Henrietta Lacks, an African American woman, had her cells used without permission from her family after she died in 1952 of cervical cancer. Her cells, nicknamed “HeLa Cells,” have led to significant medical advances such as playing a major role in the development of polio and COVID-19 vaccines.
Part of health equity, Cheryl Clark said, “is making sure that [health researchers] make up for these past harms where we have not always made it a priority to understand the entirety of the human experience. We have to make sure that all people have opportunities to achieve their best health.” Clark is the principal investigator for community engagement with the All of Us Research Program New England Consortium. She’s also co-chair of the Social Determinants Task Force.
Watson found himself asking: How do we bring in entities that have a history of trust with African Americans?
Watson relied heavily on community partnerships to accomplish a “citizen scientists” approach, which engaged African American men to discuss prostate cancer. With hope, men from different social circles would be able to share the information they learned and possibly improve involvement in research. Representation is key, Watson said, so he made sure Black gastroenterologists and other medical professionals were involved. Efforts also looked to Black churches, pillars in many communities, to form partnerships with.
Contributing to medical research doesn’t solely equate to participating in a clinical trial. To find out more about the All Of Us Research Program visit allofus.nih.gov. If you’re interested in publicly and privately funded clinical studies worldwide, visit clinicaltrials.gov.
Jasmine Vaughn-Hall was a culture reporter for the USA TODAY Network’s Atlantic Region How We Live team. Follow her on Facebook (@JasmineVaughnHall), Twitter (@jvaughn411), and Instagram (@jasminevaughnhall).
