By Megan Sayles, AFRO Business Writer,
Report for America Corps Member,
msayles@afro.com
Given the history between the American healthcare system and African Americans, it’s natural that Black individuals remain hesitant about participating in clinical trials.
The taking of Henrietta Lacks’ cancer cells without her consent or knowledge and the Tuskegee Study of Untreated Syphilis in the Negro Male embody tangible examples of African Americans being exploited and taken advantage of by healthcare professionals.
Still, the lack of diversity in biomedical research, including genetic investigations, may mean that African Americans fail to benefit from precision medicine, which uses information about genetics and genomics to yield precise medical treatments.
White male patients are the predominant participants in clinical trials, while African Americans, older adults and women are consistently underrepresented.
Howard University alumni Yusuf Henriques and Dr. Bradford Wilson are on a mission to transform this state of affairs. They believe that African Americans will drive the future of precision medicine, especially considering that those who are of African descent are the most genetically diverse.
“When it comes to clinical trials, if these genetically diverse populations aren’t represented in these trials, then there is going to be information missed regarding how a given drug or device works in different populations,” said Dr. Wilson.
The pair in 2020 founded IndyGeneUS AI, a genomics company that is creating the world’s largest digital repository of indigenous and diasporic African clinical and genomic data. Their proprietary technology detects novel signature sequences; biomarkers, a clinically measurable substances that are associated with a given disease or condition; and polygenic risk scores, an estimate of an individual’s genetic liability to a trait or disease.
About a year later, they founded sister company IndyGeneUS Health Group, which is focused on increasing awareness of health disparities, improving health literacy and connecting underserved people to culturally competent care to improve their health outcomes and quality of life.
Henriques and Dr. Wilson intend to combat the lack of African Americans’ inclusion and trust in clinical trials through three phases.
First, they will focus on increasing health literacy in Black people. Then, they will work to ensure that medical research on a given population is being conducted by those who come from that population and that the research looks into diseases and conditions that impact that community. The last phase surrounds connecting African American populations with clinicians who look like them.
Currently, the FDA does not require a researcher to include a certain percentage of minorities in clinical trials. IndyGeneUS hopes to change this so that a standard of diversity is set for drug manufacturers.
This undertaking demands an ecosystem of African-American scientists, doctors and researchers committed to bridging gaps and building trust within Black communities.
“[Numbers are] the only way we’re going to get the pharmaceutical companies, the regulators, the policymakers and the funders to pay attention,” said Henriques. “I think this is a pivotal time where we have bright scientists and doctors that are out there that we need to bring together in this ecosystem because we can now do it ourselves. That’s not a story that they could say that we don’t have the intellectual capability to do clinical trials, that’s a lie.”
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