Troubling History In Medical Research Still Fresh For Black Americans

Oct 25, 2017
Originally published on October 30, 2017 3:35 pm

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. She was a poor African-American woman whose cancer cells scientists and drug companies used for decades without her permission. But the list of abuses is long. So the National Institutes of Health and others have been trying to overcome all that, in part by working with groups like the Abyssinian Baptist Church.

"This research is not like the Tuskegee experiment," Butts tells his congregation. "And it is supported by some members of the Henrietta Lacks family."

"It's for all ethnicities," he says. "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."

As the service ends and the parishioners file out of the church, they find a block party starting outside. At one of the folding tables lining the block, researchers from the NIH, Columbia and two other New York hospitals are answering questions.

"So what is this?" one parishioner asks. "So you're doing research — tell me about this."

"It's really a unique program," says Kolbi Brown, the project's program manager at the Harlem Hospital. "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."

Many people at the block party are enthusiastic. "I can't wait for this program to start," says Joanne Thigpen, who lives in Harlem. "I'm very excited about it for myself and my children." But some are wary. Deborah Fleming listens patiently but then declines an invitation to sign up.

"As an African-American, I know that sometimes these things are used against us — not to our advantage," says Fleming, who lives in Dutchess County, N.Y. "So that's why I'm reticent about joining."

Benjamin Vines Jr., 64, who was enjoying the party down the street, has similar feelings.

"It reminds me of the Tuskegee-type thing," he says. "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."

A new poll by NPR, the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health found that about a third of African-Americans say they have experienced discrimination at a doctor's office or health clinic. The poll also found that 1 in 5 African-Americans avoids medical care because of concern about discrimination.

At first, I thought it was only older parishioners who feel that way. Hortensia Gooding, a 45-year-old graduate student who lives in Harlem, set me straight.

"I see my friends mentioning Tuskegee all the time on Facebook," Gooding says. "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."

And some people's reluctance has nothing to do with Tuskegee or Lacks. Don't forget: The study is asking volunteers to give up a sample of their DNA.

"No. Not my DNA — I can't," says 51-year-old Clerance Johnson Jr., who also lives in Harlem. "I don't know what they might use it for," he says. "It might link me to something I don't want to be linked to — any criminal activities."

So the question remains: Will the help of the Abyssinian Baptist Church — and others — be enough to overcome these deep suspicions and other obstacles that prevent minorities from participating in medical research?

This story is part of our ongoing series, "You, Me and Them: Experiencing Discrimination in America." The series is based in part on a poll by NPR, the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health. We will be releasing results from other groups — including Latinos, whites, Asian-Americans, Native Americans and LGBTQ adults — over the next several weeks.

Copyright 2017 NPR. To see more, visit http://www.npr.org/.

ROBERT SIEGEL, HOST:

About one-third of African-Americans say that they have experienced discrimination at a doctor's office or health clinic. More than 1 in 5 say they would avoid medical care because they're concerned about discrimination. Those are two findings of a new poll by NPR, the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health.

AILSA CHANG, HOST:

The poll and considerable other evidence highlight a long history of distrust of the health care system by African-Americans. One of the most egregious examples is the medical experiment known as the Tuskegee Study, a famous episode where black men were left to die without receiving antibiotics. There have been others.

SIEGEL: As part of our series You, Me and Them, NPR health correspondent Rob Stein looks at how distrust of medicine underlies a major problem - the relative lack of minority participants in medical research.

(SOUNDBITE OF ORGAN MUSIC)

ROB STEIN, BYLINE: It's Sunday morning at the Abyssinian Baptist Church, a famous African-American church in Harlem. Hundreds of worshippers are streaming into the pews. The Reverend Calvin O. Butts III steps onto the pulpit.

(SOUNDBITE OF ARCHIVED RECORDING)

CALVIN O BUTTS III: Now may we stand for our call to worship. How good and pleasant it is when all of God's children get together.

STEIN: He begins a powerful three-hour service filled with music, dancing, prayers and preaching.

(SOUNDBITE OF ARCHIVED RECORDING)

BUTTS III: Here we go - woke up. (Singing) Woke up this morning with my mind...

UNIDENTIFIED CHOIR: (Singing) Staying on Jesus.

STEIN: But then about an hour into the service, Reverend Butts does something he's never done before.

(SOUNDBITE OF ARCHIVED RECORDING)

BUTTS III: I would like to introduce the Precision Medicine Initiative.

STEIN: It's a huge new study sponsored by the National Institutes of Health.

(SOUNDBITE OF ARCHIVED RECORDING)

BUTTS III: It's now entitled 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.

STEIN: Why is this famous preacher at this famous African-American church talking about a big government medical study in the middle of Sunday service? Well, to understand why, I went to a clinic 30 blocks away at Columbia University.

ANNE HALLIWELL: Hello, Rob Stein. Nice to meet you - Anne Halliwell.

STEVE HALLIWELL: Hi. I'm Steve Halliwell.

STEIN: The Halliwells just volunteered for the study. They'll spend the next hour in front of our computer tablet learning all about it...

UNIDENTIFIED WOMAN #1: If you complete the consent, the next step will be sharing your health data. We hope that this will help researchers find new things, including maybe the next big health breakthrough.

STEIN: ...Answering detailed questions...

A. HALLIWELL: Have I ever had at least one drink of any kind of alcohol - God, yes.

S. HALLIWELL: Zero cigarettes per day, electronic nicotine - no.

STEIN: ...Getting their blood pressure, height, weight and waist measured before rolling up a sleeve to give blood so scientists can get a sample of their DNA.

UNIDENTIFIED MAN: If you can just make a tight fist for me, please. Keep your arm nice and straight.

STEIN: The Halliwells live north of Manhattan on the Hudson River, and 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.

UNIDENTIFIED MAN: You OK?

S. HALLIWELL: Mmm hmm.

STEIN: Why? Well, the reasons are complicated. One is that black people may not get the chance as often. They just aren't asked or have the time or money to volunteer. But another is that medical research has a long, troubled racial history - the Tuskegee Experiment when doctors let black men die from syphilis; Henrietta Lacks, the poor African-American woman whose cancer cells scientists and drug companies used for decades without her permission. The abuses go on and on. So the National Institutes of Health has been working to overcome all of that, among other things, like getting help from the Abyssinian Baptist Church in Harlem.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED CHOIR: (Singing) There's healing for your sorrow, healing for your pain.

STEIN: Back at the church, Reverend Butts is exhorting his congregation to volunteer.

(SOUNDBITE OF ARCHIVED RECORDING)

BUTTS III: This research is not like the Tuskegee Experiment, and it is supported by some members of the Henrietta Lacks family. And it is not just for black people, by the way. It's for all ethnicities. So there are a lot of people participating. And you can bet your life that white folk are in this. They want to know what's going to keep them alive. And we ought to know what's going to keep us alive.

UNIDENTIFIED CHOIR: (Singing) Oh...

STEIN: As the service ends and the parishioners file out of the church, they find a block party getting started on the street outside.

(SOUNDBITE OF MARK RONSON SONG, "UPTOWN FUNK")

STEIN: At one of the folding tables lining the block, researchers from the NIH, Columbia and two other New York hospitals are answering questions.

UNIDENTIFIED WOMAN #2: So what is this? So you're doing a research. Tell me a little bit about that.

UNIDENTIFIED WOMAN #3: Yes. So our goals - it's really a unique program, and 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 in this community of course.

STEIN: Many people are enthusiastic, like Joanne Thigpen.

JOANNE THIGPEN: I can't wait for this program to start. I'm very excited about it for myself and my children. So I'm - I can't wait.

STEIN: But some seem wary, like Deborah Fleming. She listens patiently but then declines an invitation to sign up. I pull her aside to ask why.

You seem to be hesitating a bit.

DEBORAH FLEMING: As an African-American, I know that sometimes these things are used against us, not to our advantage. So that's why I'm reticent about joining.

STEIN: I heard the same sort of thing from Benjamin Vines Jr., who was enjoying the party down the street.

BENJAMIN VINES JR: It reminds me of the Tuskegee-type thing. 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. And...

STEIN: Because of Tuskegee?

VINES JR: Yes.

STEIN: At first, I thought it was only older parishioners who feel that way. But as the block party was breaking up, I found Hortencia Gooding. She's a grad student who lives in Harlem.

HORTENCIA GOODING: I see my friends mentioning Tuskegee all the time on Facebook. 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.

STEIN: For others, their reluctance has nothing to do with Tuskegee or Henrietta Lacks. Don't forget. The study is asking volunteers to give up a sample of their DNA. Here's what Clerance Johnson said when I asked him about that. He's 51 and drives a truck.

CLERANCE JOHNSON: No, not my DNA - I can't.

STEIN: Why's that?

JOHNSON: Because I don't know what they might use it for. It might link me to something that I don't want to be linked to - any criminal activities.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED CHOIR: (Singing) Take me up (ph).

STEIN: So the question is, will the help of the Abyssinian Baptist Church and others be enough to overcome these deep suspicions and other obstacles that prevent minorities from participating in medical research? Rob Stein, NPR News New York.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED CHOIR: (Singing) Take me up. Take me up.

CHANG: Our series continues over the next several weeks as explore the discrimination experiences of Latinos, whites, Native Americans, Asian-Americans and LGBTQ adults.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED CHOIR: (Singing) Take me up. Take me up. Transcript provided by NPR, Copyright NPR.