Genetic testing (GT) is transforming healthcare by helping clinicians identify inherited diseases and vulnerabilities and offering precision medicine solutions that earlier generations never had access to. This includes diagnosing rare diseases and assessing patient risk for complex conditions ranging from cardiovascular disease to Alzheimer’s disease. Yet, as promising as this technology seems, not every patient is jumping on board.
Many Black patients are generally skeptical about genetic testing, due to longstanding questions about data privacy, historical medical abuses, and the efficacy of early detection. These concerns can create difficult conversations for clinicians who think genetic testing could meaningfully influence treatment decisions.
Rather than viewing this hesitation as resistance, public health experts say clinicians should be transparent to earn trust. As genetic testing expands, clinicians can empower patients to make informed decisions by explaining both what these tests can reveal and their limitations.
Although genetic testing is becoming more accessible, it should not be viewed as a routine screening tool comparable to blood work or urinalysis.
“I think we’re moving in that direction, but we’re not there yet,” said Karen Lincoln, PhD, MSW, MA, FGSA, Professor of Environmental & Occupational Health and director of the Center for Environmental Health Disparities Research in the Program in Public Health at the University of California, Irvine. She said it is becoming an increasingly important part of precision medicine and person-centered care, especially in areas like cancer, cardiovascular disease, and brain health.
Genetic testing is increasingly used to identify inherited cancer syndromes, such as BRCA1 and BRCA2 mutations, and to test for the APOE ε4 allele to estimate genetic susceptibility to Alzheimer’s disease. It can also guide treatment prescribing and diagnosis of certain rare diseases. But genetic tests don’t always reveal as much information as patients and physicians expect.
Omotola Ajibade, MD, a double board-certified adult and forensic psychiatrist, echoes that clinical perspective. “Genetics are probabilistic and not deterministic,” he said. “The best use case for genetic testing is when you’re looking for confirmation of specific biomarkers, either related to a disease-specific issue or to a specific biological function.”
Still, Dr. Ajibade noted that genetic testing can significantly shorten the time needed to diagnose rare inherited disorders. This makes it even more important that physicians explain the risks and rewards of delaying genetic testing.
One challenge clinicians increasingly face is helping patients distinguish between genetic ancestry testing and medically indicated genetic testing. They are not the same thing.
Commercial ancestry tests are designed primarily to estimate geographic origins and identify relatives. While some companies also report some health traits, these tests do not replace clinical genetic evaluation or genetic counseling.
Medical genetic testing, by contrast, is ordered by a physician to answer a clinical question. Some include evaluations to determine inherited cardiovascular conditions, pharmacogenomic markers that predict medication response, or disease-causing genetic variants.
Helping patients understand that a commercial DNA report does not provide the same information as medically supervised genetic testing is key to trust building. Many Black people may consider taking tests specifically looking to cast light on their African Diasporic identity, but that doesn’t necessarily reveal anything about their current health or disposition towards disease, even those disproportionately found in Black populations.
In fact, Dr. Lincoln said that because Black Americans have been underrepresented in genomic research, it affects how confidently we can interpret some genetic findings. That reality should make it clear to physicians that genetic testing today may not yield clear solutions for current patients, but inclusive participation may benefit future patients.
“The first thing I’d say is that providers shouldn’t mistake skepticism for resistance,” Dr. Lincoln said. “For many Black patients, that skepticism is grounded not only in history, but also in ongoing experiences with the healthcare system. It deserves to be acknowledged rather than dismissed.”
Her research on cultural mistrust suggests these concerns reflect adaptive responses to repeated experiences of discrimination. “In another line of research, we’ve shown that discrimination can actually influence the expression of genes involved in inflammation. In other words, our social experiences can become biologically embedded,” she noted. That can make it hard to determine whether genes or society are the root cause of disease in the body. Whether chicken or egg, history shapes all patient experiences, and clinicians should approach conversations about genetic testing with a great deal of empathy.
“I think it starts with listening,” Dr. Lincoln says. “Patients are much more likely to engage in these conversations when they feel heard before they’re asked to make a decision.” Once trust has been established, clinicians can explain both the benefits and the limitations of testing, emphasizing that genetics represents only one component of overall health. Chronic stress, environmental exposures, access to care, and lived experiences also influence disease risk and outcomes.
“Proper informed consent regarding the risks, benefits, and alternatives to genetic testing needs to be provided for the patient so that they can make a fully informed and rational decision,” Dr. Ajibade similarly cautioned. “Otherwise, clinicians risk perpetuating a paternalistic, coercive control over their patients’ health and lives.”
Jagdish Khubchandani, MBBS, Ph.D., MPH, Professor of Public Health at New Mexico State University, explained that those who deny or delay genetic testing when recommended by a provider may have valid concerns stemming from anxiety or fear. “However, the downsides of avoiding GT when required or recommended can be serious, including but not limited to treatment failures or suboptimal response, a delay in critical diagnosis, or delayed or missed lifesaving preventive care.”
For many Black families, questions about genetic testing extend beyond the science itself. And physicians may need to do more than simply talk to the patient. When permitted and appropriate, physicians may need to educate families and communities too.
“Many Black families make healthcare decisions in conversation with family members, faith communities, and other trusted networks,” Dr. Lincoln explained. “Rather than viewing those influences as barriers, providers should recognize them as important sources of support and partners in helping patients make informed decisions.”
Ultimately, the goal of precision medicine is not to reduce patients to their DNA but to leverage genetic information into a broader understanding of health. Our environment, lived experience, behavior, and social determinants all matter. Clinicians have to understand that not all patients will simply trust the test. Instead, they’ll need to be brought into the decision-making process and taught more about the potential health consequences of action and inaction. In either case, patients and physicians should see each other as partners in solution finding, and genetic testing is just one tool in their toolkit.
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