The National Medical Association—the black counterpart to the American Medical Association—held its annual convention last August in San Diego. Over four days at the cavernous San Diego Convention Center, 6,000 physicians attended seminars and lectures, including a plenary session on Howard’s National Human Genome Center. Collins made a presentation, followed by Charles Rotimi, who had just taken over as the director of the center, and two others from Howard. Dunston was in the audience, sitting by herself. “I can be a cheerleader too,” she said.
The attendance was sparse and got worse because the session started late and ran into the lunch hour. The implied message, as doctors drifted out, seemed to be that genomics was great for what it might deliver down the road, but they had their hands full right now with patient needs. They wanted help right now, for instance, to reduce deaths from prostate cancer. Its mortality rate in African American men is the highest in the world—at least twice that for white males with prostate cancer. Blacks’ mortality from hypertension and strokes is 80 percent higher. Although these diseases surely have genetic components, it is difficult to believe that genes could cause such a split in outcomes between the two groups.
In a 2003 report titled “Unequal Treatment: Confronting Racial and Ethnic Barriers in Healthcare,” the National Academies’ Institute of Medicine detailed the shortcomings in the delivery of health services to minorities. The shortcomings were attributed to lack of education, racial discrimination, and poverty. Citing the report, health analysts wrote in The Journal of the American Association, “health disparities and genetics may have little to do with each other, short of capturing public attention simultaneously.” Even Collins conceded in his talk that “most health disparities don’t have anything to do with genetics, but sometimes genes have a role, we think.”
Drug companies were much in evidence at the convention, and if there is one area of genomics that has attracted a critical mass of believers, it’s pharmacogenomics. In recent years reports have mounted that many drugs work better in white patients than in black patients, and vice versa. The drug companies, noting that as many as half of all drugs don’t work as intended, think that genetic variation is responsible. Scientists have illuminated alleles that may affect drug reactions. Not only are the alleles skewed between black and white study samples but their frequencies also line up with the groups’ overall responses.
Black physicians as well as white recommend patients for drug trials, and they act on those results when writing prescriptions. Clearly the practitioners in San Diego accepted race as a useful clinical criterion, regardless of geneticists’ objection that pharmaceutical scientists leave it to their subjects to say if they are black or white, which is hardly a scientific method. Studies of genetic markers that are distinctive to ancestral groups show that typical African Americans have 20 percent European blood, although that figure can go as high as 80 percent in some people who call themselves black.
A firm called Nitromed has a new drug on the horizon, a blood-pressure medication called BiDil. A 1986 study suggested that it helps blacks more than whites. At the convention Nitromed officials discussed the results of a new BiDil trial, entailing more than 1,000 African American patients with heart failure. In heart failure the diseased muscle can’t pump blood effectively against the resistance of the blood vessels.
BiDil, which dilates the vessels and eases the pressure, was found by study reviewers to have been so beneficial that the study was cut off early. The people who took the drug in addition to their regular blood-pressure medicines had fewer deaths than the control group not using BiDil. Nitromed was pushing for Food and Drug Administration approval to market the drug. Next, the company’s chief scientist said, Nitromed would search for biochemical and genetic markers that might predict the sort of patient who best responded to the drug.
Charles Curry, the recently retired head of cardiology at Howard University Hospital, was concerned about racial profiling, but he supplied patients for the BiDil trial and was listed as a coinvestigator. “I objected to the hypothesis that blacks have a ‘sick’ blood vessel—that their veins and vessels are different,” Curry said. “I still don’t believe it. Then I decided that it [the drug trial] can’t hurt. These were very sick patients, and they improved their life expectancy. Sometimes I sound like I’m flip-flopping. But I bet the data will show that BiDil helped in lowering hypertension.” The connection between hypertension and heart disease, he noted, is somewhat different among blacks and whites.
Dunston rose above such circular reasoning. Without knowing all the details, she had plenty to say about the Nitromed project. The only thing she liked was the company’s promise to look for genetic markers, a step she called “a minimum.”
“You have to characterize the individuals in the group,” she repeated. “What about those who didn’t respond? The group just tells us where to drop the net, but we can’t stop there and target the group without the mechanism known. Genetics can pass through the population on the way to personalized medicine.”
Not being a physician was an advantage to Dunston, she said. It helped her to see the research more clearly. Race in biology was to her a transitional structure, a mean and sorry thing that was destined to wither away, with a better day to come for all. “It’s an exciting time for the genetics of African American people,” she said fervently. “Even with this controversy—I’m hoping it will bring openness. I know we’ll get beyond this point.” That was it, I realized. Her faith.
Shiloh Baptist Church, the Reverend Wallace Charles Smith presiding, is a cultural landmark in Washington, D.C. On a Sunday in June, which happened to be Music Appreciation Day, Shiloh's 150-member choir rocked the house with song. Reverend Smith's sermon drew a warmly antiphonal response, and when he had finished speaking, he introduced the day's visitors. Shiloh's odd couple, a Baptist and an Episcopalian sharing a hymnal, took a small bow.
A scientist who is savvy won't mention God unless asked. Dunston knew the two topics don't mix well; I was the one who broached the church. But in the parish hall after the service, where she mingled and did some light recruiting, she cited scripture easily and often.
“My people perish for lack of knowledge," she said at the table, quoting the Old Testament (Hosea 4:6). Her listeners, middle-aged men and women who were having a late breakfast, nodded. “Anyone who studies nature closely will have problems believing this is a random process,” Dunston continued. "Science is a tool for revealing the work of God." More agreement.
When the subject turned to the genetic testing conducted at Howard and elsewhere, Stan Williams, a deacon of the church, said, “People will want to know: How will this benefit me personally? What are the dangers to me?" Dunston, her shoulders hunched, paid close attention to him. "If they feel it's safe for them, they might do it,” Williams said. "Historically we have a built-in fear of being tested."
“I sometimes say that genetics is the underpinning of all biology,” Dunston replied. "Let's use it to refine the medical diagnosis."
"I'm interested in the diseases I may be susceptible to," offered Edwin Washington, "but I'm not a big DNA fan. I feel a lot of leeriness about it.”
A woman named Constance Tate said sagely: "This project may not be at that stage yet. It may be four or five years yet before we have to worry about the risks and the benefits. But that's why we need to understand the information now." Dunston beamed and clutched Tate's hand.
When we left Shiloh, Dunston said: "Do you want to know why I went into genetics? When I was a child, I had questions about God loving us all the same, the way we were taught. I saw people being treated differently. 'Why are we different?' I asked my parents. They couldn't answer. They said I had to ask God. So my question for God was, 'Why did you make us different when it leads to bad things for people?'
"Now, with genetics, I know. We are such exquisite beings. We have the gift of the genome. The genome is a gift." She clamped both my arms with her big hands. "That's why you and I are different. That's why there is human variation. I get to know God through you!”