African Americans had every reason to join the Jackson Heart Study, and every reason not to participate. A landmark study of African Americans and heart disease, it is no ordinary research project. "The Jackson Heart Study is not business as usual," said Dr. Herman Taylor, director of the study. "We have the core research component, but then we have the educational component, and there is the community outreach component."
The study is a model that demonstrates how Taylor and other scientists believe research should be conducted. Three partners—Jackson State University, the University of Mississippi Medical Center and Tougaloo College—are conducting it. The study's main funding—more than $33 million—has come from the National Institutes of Health and the National Heart, Lung and Blood Institute, Taylor said.
The community outreach component is particularly crucial because one of the study's objectives is to help African Americans, hard-hit by a number of serious illnesses, leave a legacy of good health for future generations. The study has established a presence in African-American communities, holds regular health fairs and provides information about healthy living and breaking poor heath habits.
"The community has been involved every step of the way with this study," Taylor said. "They have told us how we should do certain things—what would be more effective."
Racist Policies and Practices
One of the most ambitious goals of the study will be an attempt to do 150 years worth of damage control. Bluntly, black people have colossal issues with the medical, health care and science communities. Many believe they have been grossly mistreated and/or under-served by professionals in those fields. Some of the JHS' programming aims to repair damage that shattered the trust—or never allowed it to develop in the first place—between African Americans and the medical, health care and science communities, and by extension the American government that has often supported racist policies and practices.
This mistrust goes way back—to the era of slavery, when stories were rampant of slaves being rounded up for special torture, and it moved like a poisonous snake through history until the Tuskegee Experiment, which broke the proverbial camel's back. Tuskegee became the symbol of all that had gone wrong between black people and the medical, health and science communities.
The Tuskegee Experiment used 399 poor black illiterate farmers in Macon County, Ala., as guinea pigs in a torturous disaster designed to let them die of syphilis. For 40 years—from 1932 to 1972—the disease ravaged their bodies while they were told they were receiving treatment for "bad blood." They were not treated nor were they told what they had or how serious it was. This travesty continued even after the Henderson Act was passed in 1943 requiring treatment of venereal disease, after penicillin proved to be the first real cure for the disease in the 1940s, after 250 of the men signed up for the draft in World War II and the government waived treatment, and after the World Health Organization's declaration in 1964 requiring "informed consent" in experiments involving humans.
The conspiracy to treat these men so unethically was initiated by the Public Health Service, involved black medical professionals and institutions, including the historically black college it is named for, and reached all the way up to the U.S. Surgeon General who sent the men certificates for participating.
By the time the experiment was exposed and closed, 28 men had died directly of syphilis, another 100 had died of complications of the disease; 40 wives had been infected, and 19 children had been born with genital syphilis. The last "victim" of the Tuskegee Experiment has died, "and we must never forget them," said medical historian Dr. Vanessa Northington Gamble.
A $1.8 billion lawsuit was filed on behalf of the men, and a $10 million out-of-court settlement was reached. They and their families were given free health care for life.
Black people absorbed information about this unbelievable mistreatment, along with all the other suffering at the hands of medical and governmental entities, into the fiber of their culture, and whether or not they all know the specifics of Tuskegee, it affects their thinking about the medical profession in general, scientists say and surveys show. It is evident in "conspiracy" theories that thrive in black communities, among all economic and social backgrounds. In a poll taken in 1990, 10 percent of African Americans believed that AIDS was a biological weapon designed to kill off black people, and another 20 percent thought that theory could be possible.
That mistrust is alive and well today, according to Gamble, and she believes the onus is on the medical and health care professions to build a trusting relationship with African Americans, working community by community, not acting as if there is a single trust-building method that can be draped over all black people.
"Every community is different," she said last month during a health fair sponsored by the JHS. "You have to listen to the people of each community."
Most black people of a certain age know someone whom white doctors allowed to bleed to death just because he or she was black, or they remember the name of a racist nurse at a health department who particularly delighted in humiliating black people, or they have seen a dentist put his knee on the chest of a black patient who had not been given anesthetics. Those images, that flagrant disregard for their lives, are deeply embedded in their cultural memories, and African Americans, like their African ancestors, are oral people: They tell it.
They have passed the horror stories on to succeeding generations, and, perhaps even more detrimental than the oral documentation are the subtle tell-tale signs of mistrust—it is the rigid way older black people hold their back while they wait to see a doctor, or seemingly inexplicably dangerous behavior, like the hesitancy of many black people to seek medical attention, even routine exams, their mistrust of doctors' diagnoses or their reluctance to participate in studies.
Gamble warned during a slide presentation about the devastation of the Tuskegee Experiment that trust will not come automatically, even though much of the Jackson Heart Study staff is black. She was on the Tuskegee Legacy Committee that convinced then-President Bill Clinton to apologize for the Tuskegee Experiment in 1997.
Black doctors and nurses were involved in the Tuskegee Experiment, including Dr. David Satcher, who went on to become the second African-American U.S. Surgeon General. Eunice Rivers was a black nurse who served as liaison between the men and the doctors and nurses who conducted the experiment; it could not have been successful without her. Even though Rivers seemed to care for these men, according to the James Jones' book, "Bad Blood: The Tuskegee Syphilis Experiment," she said she was taught not to question authority, and she never did even as she watched this immoral experiment play out with the deaths of men who trusted her, probably because she was black.
Even after the experiment was stopped, Rivers claimed to see no ethical problem with it, according to "Bad Blood." And the Public Health Service never admitted any wrongdoing. They adamantly denied that the Tuskegee Experiment was comparable to the horrible experiments Nazis conducted on Jews during WWII.
'White folks running things'
During the beginning days of the Jackson Heart Study, there were rumblings that UMC's hands were too much on the study, that it stank of Tuskegee, that it was business as usual: White folks running things.
"You might still hear that today," Taylor acknowledges, but he says that all of the partners provide necessary elements to make this unusual kind of study work.
For instance, Jackson State collects all the data, makes sure it is clean, comprehensive and that it can hold up to scrutiny, said Daniel Sarpong, statistician and director of the JHS Coordinating Center.
JSU also handles the logistics of the study, helping to plan events and making sure things run smoothly between the three partners.
Tougaloo oversees the educational element; the college sponsors the Science Liberal Arts and Math Program, referred to as SLAM, that targets top high school students. Its aim is to interest them in the kinds of courses that will build good foundations for careers in science, and it exposes them to research by introducing them to scientists and involving them in JHS programs. The JHS Scholars program recruits college students for a rigorous hands-on research program.
One of the most important issues the study will explore is why African Americans are hit so hard by so many illnesses. "High rates of all of these diseases among African Americans can't be because of DNA," Taylor said.
Scientists also hope the study will provide data that can be used as baselines for comparative studies in the future. For years, white scientists pursued ridiculous theories, often called "scientific racism," like whether black people have smaller brains. Because of racism, there is not nearly enough good data about African Americans to use comparatively even today. For instance, black women report being more stressed over the past decade, but are they more stressed than black women in pre-'60s America?
"We just don't have a lot of good data," Taylor said. "We're hoping to this study will collect data that can be used in any number of ways."
March 31 ends the first phase of the study—the recruiting of more than 5,000 people. By then, participants will have completed a home survey and the 4 1/2-hour physical valued at $4,000. Then they will be tracked by phone and through physical exams.
Margie Cunningham and her husband are both participants. Mrs. Cunningham had participated in Atherosclerosis Risk In Communities, referred to as ARIC, a longitudinal study of heart disease by age, race and place in four American communities, including Jackson. "I just invited myself to join the ARIC study," she said. "I don't think they would have gotten to me if I hadn't."
The University Medical Center conducted the ARIC study in Jackson and recruited more African Americans than the other communities. The data collected indicated a need for a longitudinal study of African Americans and heart disease; that is one of impetuses behind the Jackson Heart Study. Scientists used information from ARIC to design the JHS, Taylor said. For instance, the age was expanded to include older and younger people than ARIC.
Participants of ARIC were invited to participate in the Jackson Heart Study and Mrs. Cunningham was eager. She has been helping to get the word out about the JHS. "I've been telling people to join," she said. "They get free check-ups; they would find out if something was wrong with them."
'I Wanted Something From Them'
Mrs. Cunningham, who is clearly not average, voraciously reads everything she can find about health and medical issues, advises her and her husband's doctors, and makes concoctions to treat their various ailments. She doesn't believe that history should dictate current behavior. She said she was not concerned at all about participating in ARIC even though most of the staff was white. "I wanted something from them," she said.
Fred Cunningham, 82, could not participate in ARIC because he was too old, but he is eligible for the JHS.
"I was glad to be able to get him into this," Mrs. Cunningham said.
Heart disease runs in Mr. Cunningham's family, which is one of the things that the JHS hopes to look at: How heart disease affects families.
Mary Palmer, of Jackson, has concerns about her family, as well. Her mother died of a heart attack 20 years ago. She has gotten six of her siblings to sign up, and her husband and his siblings.
"We have a history of heart disease and diabetes in our family," she said. "So I thought we should get involved in this."
Cunningham says that anybody who is eligible should have joined the JHS, and she says that Tuskegee shouldn't cast a shadow over it. "First of all, they didn't propose treatment (like Tuskegee). They were going to examine us."
The study provides positive benefits for participants, she says. "You would think they would be knocking down the door to get in."
But if the Jackson Heart Study is to help undo the legacy of the Tuskegee experiment, its staff will have to be as unrelenting in their efforts to help African Americans become healthier as the staff of Tuskegee was in its mission to let the men of Tuskegee die.
Challenging the Mind
Kewanza Williams had the room enthralled with the troubling statistics about teens in Mississippi—high rates of teen pregnancy, teens with sexually transmitted diseases, and those who are HIV positive or who have AIDS. Then she told her audience: "It's not enough to just talk about the statistics; we have to help teenagers take charge of their own heath."
Williams made her presentation at a health disparities conference at the Research and Development Center in Jackson last summer, but unlike the other speakers, she isn't a Ph.D. who has been doing research for years. She is a junior at Tougaloo College, and it was obvious that she had found her passion.
Williams is one of 43 scholars participating in the educational component of The Jackson Heart Study—the largest ever conducted on African Americans and heart disease. It will span three decades, and is what some scientists are calling a new research model because it was not just designed to collect data. JHS also will provide community outreach—educating people about disease prevention and healthy living, and has the third component, the educational element, which Tougaloo College supervises. The Jackson Heart Study Scholars Program targets college students, while the Science Liberal Arts and Math Program, called SLAM for short, is for high school students.
Williams applied for the scholars program when she was a freshman and says she has been stretched by the experience.
"The Jackson Heart Study has opened so many doors," she said, "and helped me to figure out what I want to do with my life."
The Scholars program gives Tougaloo students hands-on research experience; a student from any discipline can apply to what Wendy White, coordinator of the JHS Undergraduate Training Center, says is a "very competitive, rigorous program."
Some of Williams' colleagues have researched cancer, medical ethics, and the costs associated with cardiovascular disease, according to White. The student who researched the costs associated with heart disease now has an MBA and works for JHS. "That's why we take students from all fields," White said. "They can look at any aspect that interests them."
Herman Taylor, director of the study, says the hope is that some of the scholars will become interested in research or medicine or science as careers. Or, that they will just be able to use their knowledge in some significant way. "For instance, we have a journalist in the program; he might be better able to write about public health or medical issues because of his involvement with JHS," he said.
Because historically much of the research involving African Americans has been distorted by racism, and because they are underrepresented in the fields of science and research, African-American researchers say it is crucial that young blacks be exposed early to medicine and science and the opportunities and possibilities the fields offer.
Williams, a chemistry major who has a 4.0 GPA, says she plans to pursue a Ph.D. at Howard University, and then she will teach high school and later college where she will do research.
Last summer, she spent 10 weeks at the University of Arizona where she worked on a youth empowerment project sponsored by the university's minority health disparities program. The project was designed to teach kids how to make good life choices, particularly about relationships and substance abuse. Williams had to choose a topic to research, and she set out to prove that tailoring a program to fit each individual worked better than taking a one-solution-fits-all approach based on statistics. She said she proved her theory.
And next summer, Williams plans to do research at Kansas State University. "I enjoyed doing 'people research,' as I call it, and working in public health, but I wanted to expose myself to labaratory research, too."
- Carole Cannon [e-mail unavailable]
I just finished reading this piece, and I have to say, Carole, you kick some serious ass. This is such a wonderful story. I'd heard about the heart study, but it never would have occurred to me to place it in this context - which meant I was missing much of the significance of the project, both medically and socially. This, along with Rep. Fleming's piece, show the power of really reaching out and learning about other people's history and experiences. Keep it comin'.