Medical research studies haven't always been kind to black Americans. For many, events like the Tuskegee study and the case of Henrietta Lacks loom large; and for some, the dark history of medical research done on black Americans leaves them suspicious of modern medical research.
One new project is hoping to overcome this anxiety.
All Of Us (also known as the Precision Medicine Initiative) is a project sponsored by the National Institutes of Health (NIH) designed to attract people, especially minorities, into participating in medical research.
"It is a landmark longitudinal research effort that aims to engage 1 million participants of all ethnicities to improve our ability to prevent and treat disease based on individual differences in lifestyle, environment and genetic make-up," said Rev. Dr. Calvin O. Butts III according to NPR.
Butts was recruited into the program by the NIH, which hopes that trusted leaders can influence their communities into signing up.
He has become an advocate for the program, and recently hosted after service block party featuring information tables with NIH representatives outside of his church.
"Sorting out the huge variation in the human race is very, very important — and is the future of good medicine," said Steve Halliwell, who answered the initiative's call for research subjects.
Halliwell is white. His eagerness to volunteer, and the reluctance of Butt's parishioners reflects trends that medical researchers have seen for some time.
White people are far more likely to sign up for medical research studies than black people. When trying to get to the bottom of why, researchers found that black Americans tend to have less time than their white counterparts, and often lack the resources needed to participate. They've also found that the troubled racial history of medical research plays a significant role in black American's hesitation to sign up.
Because of this, there isn't as much data on how various diseases, illnesses and treatments affect black people. This is a problem, because if certain treatments are more effective in black people than in white people, this fact will go undiscovered, leaving black people to suffer unnecessarily.
Many at Butt's block party couldn't be convinced that signing up was a good idea, however.
"It reminds me of the Tuskegee-type thing," said Benjamin Vines, Jr. "And in my culture, African Americans are scared of the doctor. They don't go to the doctor until the last minute — until we're almost on our deathbed — simply because of that."
"This research is not like the Tuskegee experiment," Butts assured. "And it is supported by some members of the Henrietta Lacks family."
"It's for all ethnicities," he added. "And you can bet your life that white folk are in this. They want to know what's gonna keep 'em alive. And we ought to know what's going to keep us alive."
Butt's assurances seemed to fall on deaf ears, proving there's no quick fix for overcoming history.
"I see my friends mentioning Tuskegee all the time on Facebook," Hortensia Gooding said. "There's a lot of deep, deep-seated fear and concern that black lives don't matter and that the medical community really will harm people of African descent on purpose — just for profit or just to help someone from another race."
Still Kolbi Brown, the project's program manager at the Harlem Hospital, remains hopeful.
"It's really a unique program," Brown said. "Our goal is to get participants — a diverse range of participants. So we want women. We want minorities. We want everybody. But we really want women and minorities to participate in this community, of course."
