This year has brought one thing to light: Many African Americans remain hesitant to participate in medical research. Why? The community maintains a widespread distrust of health institutions. This isn’t just because of the Tuskegee Experiment, or Henrietta Lacks. This is also due to a myriad of factors, such as the exponentially higher maternal mortality rate of Black women (2.5x that of white women); pervasive health inequities, from preventive care resources to food deserts; and the overall legacy of disregard of Black lives and safety in America, from the hands of the police and laymen alike. It’s reasonable to be doubtful, but it may not be prudent.
A recent study of trials involving 150,000 people over the last 21 years found that a staggering 86% of participants were white. It’s problematic. The lack of diversity in research and trials has a direct impact on how effective research and outcomes will be for the masses. Researchers don’t just need Black people — for example, Hispanic representation in industry-led trials is only 3% — there is a need for individuals that represent the diverse makeup of the U.S. population, including variables such as ethnicity, location, lifestyle, and more, to participate in health research to maximize the effectiveness of outcomes for more people.
The All of Us Research Program is looking to create that change. All of Us has a goal to increase the participation of those who have been underrepresented in biomedical research. “The All of Us Research Program has more than 360,000 participants so far and we are on our way to our goal, which is 1 million,” says Conchita Burpee’, Marketing & Community Engagement Consultant at The Cobb Institute for the All of Us Research Program. “The program is working to bridge that gap by building the largest and most diverse ever (research pool), that includes all those groups who’ve been left out of research in the past.” Listen to Conchita’s full interview here.
While most research subjects are Caucasian, America isn’t — in fact, people of color make up the vast majority of the population. In an effort to improve the breadth of medical research All of Us has a goal to increase participation of those who have been underrepresented in biomedical research to create a pool of candidates for researchers to utilize to increase health outcomes for all people.
According to experts, the absence of people of color in research studies has had an adverse impact. The most significant is that it hinders the ability to create improved services and medical interventions for all. “If people of color are not at the table on research studies, then, unfortunately, there can be serious consequences,” says Burpee.
The All of Us Research Program isn’t just one specific study. It’s actually a powerful tool – a data hub – that researchers studying all kinds of diseases can use that reflects the diversity of the U.S. To date, more than 300 studies are already tapping into this resource. They are working to learn more about everything from cancer and heart disease to diabetes and Alzheimer’s, and more. The hope is that this will drive personalized medicine – so the treatment you receive will be based on all of the factors that make you unique.
While All of Us Research Program participants share their data with researchers, they receive back valuable information about their health. Whether that’s seeing how their information compares to others or DNA results that might give new details about their genetic ancestry, traits, and health.
“The value of participating in this study is huge,” Burpee’ adds. “It offers a chance for us to learn about our own health including personalized risk factors and exposures. It offers the opportunity for us to understand the disease and improve the health of your families, and generations to come.”
As Black communities look for ways to change and improve their collective health, the All of Us Research Program offers an opportunity for increased insight for the individual and as a whole. “You can learn about your own health, and health history,” she says. “It’s for the greater good.”
Find out more about All of Us at joinallofus.org/newsone.