How can I trust that my information will be safe? That’s the question I hear as a young black doctor working in clinical research when I talk to black African and Caribbean communities about getting involved in genetic studies. You don’t have to look far to find mistrust—or the reasons for it.
Consider the infamous Tuskegee syphilis study, where blacks were left untreated so that doctors could monitor the progress of the disease even though there was a cure. Or the case of Henrietta Lacks, whose cells were taken without consent and then used in research around the world, making millions for companies while her family couldn’t afford health care. Black people have long been treated as experimental subjects.
Working in research, I understand that good healthcare depends on good data. Black people—and many other groups including people of non-European descent, older adults, and people with complex health needs—are underrepresented in clinical research. To truly understand diseases, 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 healthcare systems plans to put genetics at the center of patient care. This is precision medicine, which 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 disease and choose a treatment that is more likely to work for you.
But work of institutions such as the University of Exeter in the UK and Queen Mary University of London shows that a large gap remains in our understanding of genetics in non-European individuals and how it relates to disease. This research shows that some blacks 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 restore trust.
Current research often randomly excludes people in its design. If your studio recruitment materials only come in English, you’ve already lost people. If you’re only recruiting during office hours on a weekday, you’ve excluded shift workers. If you only work through hospitals and universities, you’ve neglected where communities really gather – churches, barbershops, community centers. Social context matters and is sometimes missed by traditional research.
Academic institutions are increasingly recognizing that different communities need different approaches. It requires a balance of cultural sensitivity and scientific care. It’s about empowering the community, about how the science behind the research translates into actionable change in the community, whether through policy change or better access to care. I also noticed that representation matters in research. When people see themselves in researchers like me, it builds trust. Both parties understand on a personal level why research is important.
How do we fix this? Researchers need to talk to communities from the start, not just show up and ask questions. As we know, research funding organizations must include community engagement and training in the research budget which involve patients and communities it is increasingly recognized in research as an effective way to increase the participation of underrepresented groups and thereby improve population health. Most importantly, researchers need to give something back through health programs, jobs, or facilities to show that they don’t just take data and disappear.
And for anyone who wants to participate in the research, please do. There are many ways: join a clinical trial or simply fill out a questionnaire. Every piece of information counts.
Dr Drews Adade is a clinical researcher in London
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