How clinical research is still failing underrepresented communities

How can I be sure my information will be safe? This is the question I hear as a young black doctor working in clinical research when I talk to black communities in Africa and the Caribbean about participating in genetics studies. You don’t have to look far to find distrust – or the reasons for it.

Take the infamous Tuskegee syphilis study, in which black men were left untreated so doctors could track the progression of the disease, even after a cure existed. Or the case of Henrietta Lacks, whose cells were harvested without consent and then used in global research, making millions for companies while her family couldn’t afford health care. Black people have long been treated as experimental objects.

Working in research, I understand that good health care relies on good data. Black people – and many other groups, including people of non-European ancestry, older people and those with complex health needs – are underrepresented in clinical research. To truly understand the disease, we need to study all the groups it affects, so we can develop tests and treatments that work for all of us.

In the coming years, health systems plan to place genetics at the center of patient care. This is precision medicine that uses genetic information to tailor prevention and treatment to each individual, rather than giving us all the same standard approach. Doctors could predict your personal risk of getting a disease and choose treatments that are more likely to work for you.

But work from institutions such as the University of Exeter, UK, and Queen Mary University of London shows that there remain large gaps in our understanding of genetics in non-European individuals and its link to disease. This research shows that some Black people have a genetic deficiency that can affect the accuracy of standard tests used to diagnose and monitor type 2 diabetes, leading to a delay in diagnosis. We need more Black people in research, but first we need to rebuild trust.

Current research often accidentally excludes people in its design. If your study recruitment materials are only available in English, you’ve already lost people. If you only recruit during weekday business hours, you have excluded shift workers. If you only work in hospitals and universities, you’ve neglected the places where communities actually come together: churches, hair salons, community centers. Social context is important, and traditional research sometimes misses this element.

Academic institutions are increasingly realizing that different communities require different approaches. There needs to be a balance between cultural sensitivity and scientific care. It’s about empowering the community, seeing how the science behind the research translates into concrete changes in the community, whether through policy change or better access to care. I’ve also noticed that representation in search is important. When people see themselves in researchers, like me, it creates trust. Both parties understand, on a personal level, why research is important.

How can we solve this problem? Researchers need to talk to communities from the start, not just ask questions. Organizations funding research must consider community involvement and training in the research budget, as we know that involving patients and communities in research is increasingly recognized as an effective way to stimulate the participation of underrepresented groups and thus improve population health. Most importantly, researchers need to give something back through programs, jobs, or health facilities, to show that they are not just taking data and making it disappear.

And for anyone who wants to participate in research, do so. There are many ways: participating in a clinical trial or simply filling out a questionnaire. Every piece of information counts.

Dr. Drews Adade is a clinical researcher in London