NPR, October 25, 2017
Rob Stein


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It's a Sunday morning at the Abyssinian Baptist Church, a famous African-American church in the Harlem area of New York City. The organist plays as hundreds of worshippers stream into the pews. The Rev. Calvin O. Butts III steps to the pulpit.

"Now may we stand for our call to worship," says Butts, as he begins a powerful three-hour service filed with music, dancing, prayers and preaching. "How good and pleasant it is when all of God's children get together."

Then, about an hour into the service, Butts does something he has never done before. "I would like to introduce the Precision Medicine Initiative," he says, referring to a huge new project sponsored by the National Institutes of Health. It's now called All of Us.

"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 makeup," Butts says.

Why is this famous preacher at this famous African-American church talking about a big government medical study in the middle of Sunday service?

To understand that, I visit a clinic more than 30 blocks away at Columbia University. That's where I meet Anne and Steve Halliwell of Irvington, N.Y., who just volunteered for the study.

"Sorting out the huge variation in the human race is very, very important — and is the future of good medicine," Steve Halliwell says.

The Halliwells spend the next hour learning about the project and answering detailed questions about their lifestyles, medical history and health. They also get their blood pressure, height, weight and waists measured and have blood drawn so scientists can get a sample of their DNA.

Anne Halliwell is 67; Steve is 74. They're white. And that's the problem: White people like the Halliwells are much more likely than black people to volunteer for medical studies.

The reasons are complicated. One is that African-Americans may not get the chance as often — they just aren't asked by their doctors or don't have the time or resources to volunteer.

But another is that medical research has a long, troubled racial history. One example is the Tusgekee study, which involved doctors letting black men die from syphilis. Another example is the case of Henrietta Lacks. [...]

bioethics biotechnology genetics human rights human subjects research human tissue public health race research