Genomics and genetics are powerful fields of medicine that hold immense potential for personalized health care, but have a complicated history when it comes to communities of color. At BlackDoctor.org’s Minority Health Summit, presented in partnership with Cedars-Sinai, experts discussed how genomic advances can benefit Black and brown communities while addressing historical concerns around trust and access.
Understanding Genetics vs. Genomics
Saquib Lakhani, MD, director of the early detection genomics research program at Cedars Sinai, explained the fundamental difference between these commonly confused terms:
“Genetics is the study of individual genes that make proteins. Genomics, on the other hand, is sort of a broader field, and it takes a look at… all the genes in your body and all the DNA in your body and how it comes to play into your health.”
While only about 1-2% of our DNA contains genes that encode proteins, genomics examines the entirety of our genetic material and its impact on health across our lifespan.
How Genetics Impacts Our Lives
Cathy Wicklund, a board-certified genetic counselor at Northwestern University Medicine, highlighted how genetics touches us throughout our lives: “Even before you’re born, even when your mom is pregnant… some tests can be offered before you get pregnant. There are also tests that can be offered during your pregnancy… And then once you’re born, there’s also testing called newborn screening.”
She emphasized that genetic information extends far beyond rare diseases to include risk factors for common conditions like “hereditary cancer or diabetes or heart disease, Alzheimer’s.”
Bernice Coleman, NP, PhD, added another crucial application: “The other way that genes are important is how we metabolize drugs that we take. That’s sort of a big deal.”
Building Trust in Genomic Medicine
Given the historical mistreatment of Black communities in medical research, providers must work actively to rebuild trust. Dr. Coleman emphasized listening as fundamental: “As providers, we really have to listen to our patients. And we should always walk into that interaction in a room or wherever we may be in a very respectful way.”
She described the provider-patient relationship as “a partnership” that requires reliability, honesty, and ongoing communication.
Cathy Wicklund added: “Because of so much that has been done to the Black population in the past, I think it’s super important for us as providers or health care professionals to be able to acknowledge that, like, openly acknowledge that we have done things that are not trustworthy, and it is on us to regain that trust.”
John Greally, PhD, who conducted research in The Bronx, NY, noted that communities want more than trust—they want control: “Trust is all very well, but that’s not good enough in The Bronx. They need control. They want to take it a step further and have control over the use of their data.”
Ensuring Equal Access to Genomic Advances
Access remains a significant challenge. “There’s the problem of getting access to the test, but then even once you have the test, is this test actually gonna work just as good in me as it does in somebody who has, like, a European background?” Wicklund noted.
She pointed out several barriers: “There’s the cost. There’s what we talked about, like, the untrusting… Do I even have insurance? Will the insurance cover it? Do I have the ability to go in to get this test? What about child care? What about my work?”
Dr. Coleman emphasized meeting communities where they are: “Communities are not really hard to reach. We hardly reach them. That’s really the problem.”
Privacy Concerns and Protections
When it comes to protecting genetic information, Dr. Greally explained that HIPAA protects medical privacy generally, while the Genetic Information Nondiscrimination Act (GINA) offers specific protections: “You can’t be discriminated against in your workplace based on any genetic problems that you may have… and you cannot have health insurance denied to you or offered at a higher premium based on preexisting genetic conditions.”
However, he noted that these protections don’t extend to life insurance, long-term care, or disability insurance.
The Importance of Family History
As the panel concluded, Cathy Wicklund emphasized a practical step everyone can take: “The easiest thing that you can do is talk to your family about diabetes, heart disease, cancer, really asking those questions… knowing ahead of time can help you either maybe there is genetics or genetic tests that can help you identify you’re at a higher risk. Maybe it’s lifestyle changes.”
Dr. Greally highlighted the need for greater diversity in genetic studies, noting that “90% of genetic studies have been performed on white European individuals and less than 4% on people who are self-described as Black.” Increasing participation from underrepresented communities is essential for ensuring precision medicine benefits everyone equally.
As Dr. Coleman concluded: “It’s really important to give some thought to participating in research because the future really, really is precision health for you. But we have to have more of you in the data so we can make the right decisions.”