This April, 23andMe is lending a hand to the Bernie Mac Foundation to shine a light during Sarcoidosis Awareness Month on a condition that disproportionately impacts the Black community.
The brilliant Chicago-based comedian Bernard J. McCullough, also known as “Bernie Mac,” lived with sarcoidosis for years and died from complications of the disease in 2008. But before his death, Bernie and his wife Rhonda started the foundation, and with his wife at the helm, the foundation lives on. It’s become a vital force in raising awareness about sarcoidosis, along with raising money for research that may lead to new treatments or a potential cure.
On April 22nd, the foundation will host its 6th annual fundraising event in Chicago — proceeds from this event will benefit the Bernie Mac STAR (Sarcoidosis Translational Advanced Research) clinic. 23andMe is a corporate sponsor of this event and will attend to lend our support. We will also be providing complimentary Health + Ancestry kits for attendees.
What is Sarcoidosis?
Sarcoidosis, pronounced SAR-COY-DOE-SIS, is a rare inflammatory disease that affects the Black community at double the rate of white individuals.
The condition leads to the clumping of inflammatory cells in different organs. While it primarily affects the lungs, it can affect any organs in the body. Symptoms include fatigue, swollen lymph nodes, or painful swelling of the joints. Because it often affects the lungs, sarcoidosis symptoms may include shortness of breath, wheezing, a persistent cough, or chest pain. When it impacts the heart, the condition may result in irregular heartbeat, accelerated heartbeat, or heart swelling, known as edema. It can also affect the eyes resulting in blurred vision.
Currently, there is no cure and few approved treatments.
A study published in 2015 indicated that African Americans were twelve times more likely to die from the condition than patients of other ethnicities. Unfortunately, just as with other conditions that disproportionately impact underrepresented communities, awareness about sarcoidosis and funding for research is sorely lacking.
23andMe’s Representation in Sarcoidosis Research
In 2022, 23andMe launched a study into the genetic underpinning of sarcoidosis.
Just as with most other rare diseases, sarcoidosis has a strong genetic component. But many genetic variants associated with the condition have yet to be identified. Though our recruitment effort is ongoing, we’re already gathering interesting insights from those currently participating. For instance, among those participating in our research, the most reported symptoms were granulomas in the lungs or lymph nodes. Granulomas are tiny nodules where immune cells clump together at an infection or inflammation site.
23andMe’s work on sarcoidosis research is part of a broader effort to improve representation in genetic research, especially for diseases that are more prevalent in those with African ancestry.
A Commitment to Representation in Research
This is all part of a long standing commitment to address research disparities which we started back in 2011 when we launched our Roots into the Future.
Since then, we’ve had a steady cadence of projects, from the African Genetics Project to the African American Sequencing Project and the Global Genetics Project. We’ve also begun work on sickle cell research as well as a sickle cell awareness program.
Representation in research is important because, without it, the benefits from research fail to help all people. This further compounds health disparities.
To counter that 23andMe has done work within the Black community, connecting with groups like the Bernie Mac Foundation, in the case of sarcoidosis.
Many of the projects we’ve been doing over the last year, were only possible with all the effort we’ve made over the last decade to improve the diversity of our research participants. But, more importantly, customers of African descent who have consented to participate in 23andMe research have allowed us to study conditions important for the Black community.
Beyond it being the right thing to do, improving representation also makes for good science. For example, research shows that genetic studies that include diverse, multi-ethnic participants have a higher chance of discovering important genetic variants associated with diseases. Those associations would have been missed in studies that focus only on one homogenous group.
In doing this work, we also acknowledge the history of mistreatment of the Black community in research. This history has played a role in a hesitancy to participate in studies like this. All of our research is overseen by an external independent research review board. We also have internal reviews to ensure that we conduct our research in a way that does not perpetuate the unethical treatment of under-represented communities.
As with any study we conduct, we’ve also ensured that we respect participants’ ethical rights, privacy, and humanity. We never share genetic or self-reported Information without participants’ consent. To learn more about privacy at 23andMe go here.