OVERCOMPENSATION: Atoning for wrongs led to exclusion of minorities, notes Robert F. Murray, Jr.
Others say that while minorities' attitudes are changing, much more examination is needed to pinpoint exactly how they feel about science and research. This concern comes at a time when the National Institutes of Health, via its Revitalization Act of 1993, has ordered the adequate representation of women, minorities, and racial and ethnic subgroups in studies it funds (M.E. Watanabe, The Scientist, March 6, 1995, page 14).
"With the minority community, particularly the African American community, what pops up all the time is Tuskegee. We as African Americans must never forget Tuskegee," says Reginald Sykes, the president and founder of Quality Research Systems Inc., a Chicago company that manages clinical trials. "But in order to benefit fully from all the wonderful new medications being developed yearly, we must participate in those trials [fully]."
Nearly every observer interviewed for this article cites the Tuskegee study as a reason behind minorities' mistrust of science. For nearly 40 years, until 1972, federal government researchers observed 400 African American men from rural Macon County, Ala., as they suffered and died from syphilis. Despite the discovery in the 1940s that penicillin cures the disease, the researchers neither treated the men nor informed them of their malady.
"Since Tuskegee, there has been improvement in these [researcher-subject] relationships," observes Harold P. Freeman, director of surgery at Harlem Hospital Center in New York and chairman of the President's Cancer Panel, which monitors and guides the National Cancer Program and advises the president on matters pertaining to cancer. "But there's still an underlying element of distrust between the poor populations and minority populations that may be subjects of research and the research establishment. There's a need to face that point, not ignore it."
In addition to the documented cases, such as the Tuskegee study, Arthur L. Caplan, director of the University of Pennsylvania's Center for Bioethics, states that he hears other stories about mistrust among minorities. "Many researchers will tell you they have trouble [doing] research in the minority community because of this problem." He adds: "There's certainly been many, many areas where minorities have been exploited, mistreated, abused, and used by the research community. There's also a level of distrust in the health care system, mainly because of access problems among poor people."
TUSKEGEE’S LEGACY: Some people fear the government created AIDS, according to Penn internist Lorna Lynn.
However, even those who feel that mistrust of science still exists among minorities acknowledge that most of the evidence is anecdotal. As Caplan puts it, "There's plenty of opinion, but not much data."
"Anecdotally, [one sees] that minorities, and especially African Americans, feel mistrust of science and medicine," observes Anita Allen, associate dean for research and a professor of law and philosophy at Georgetown University Law Center. "It comes out in the family context by observing a recognized reluctance to go to doctors, delays in seeking care for serious illness, and reluctance or delays in authorizing surgery."
Robert F. Murray, Jr., chief of the division of medical genetics and a professor of pediatrics, medicine, and genetics at Howard University's College of Medicine in Washington, D.C., acknowledges that while some minorities may have "concerns" over research, "I don't know that anybody can say with any confidence that they know what the prevailing attitude is among minorities."
He explains that in the 1970s, after the Tuskegee study was exposed, minority communities asked for, and received, greater representation on the scientific boards that oversee research projects. But as a result of the heightened sensitivity, researchers may have become too cautious in attempting to protect minority people from the types of unethical behaviors that helped breed mistrust in the first place.
"As new technologies and new therapies were developed, it became apparent that minorities were not being studied at all because of this outcry," Murray declares. "People were concerned about the consent process and being sure that minority individuals understood [the research]. As a consequence, people avoided doing research on minorities."
'BEDROCK': Researchers must take informed consent more seriously, argues Phil Reilly.
"Too many researchers look at informed consent as a document they have to get signed, as a hurdle they have to leap over," he complains. "They don't appreciate it's a bedrock principle that defines the relationship between the subject population and the researchers. It's a process that has to be taken seriously. That's true for everybody. It's doubly true for people who might be skeptical of what you're doing."
BELL CURSE: University of Mississippi’s Stephanie Smith cites some scientists’ linking of genetics and intelligence.
WHY ME?: Minorities often are reluctant to be research subjects, says the University of Chicago’s James E. Bowman.
"All of the sudden, a research group is interested in you. The first reaction is going to be suspicion," Bowman says. "'Why are you interested in me now?' To ask them to . . . willingly participate in human experimentation is oftentimes too much to ask. . . . As long as we have an inequitable health care system, minorities must be suspicious. If they're not, they're foolish."
Freeman notes that even when minorities do participate in studies that yield advances in treatment, too often they cannot afford to pay for those benefits once they hit the market. "That's somewhat of a paradox. . . . That's something that has not been completely eliminated in the minds of the disadvantaged."
The combination of historical experience and unequal access to health care has created the mistrust and allowed it to continue, according to Kathleen M. Boozang, an associate professor of law and director of the Health Law and Policy Program at Seton Hall University's School of Law in Newark, N.J. "We continue to perpetuate systemic flaws" in how people receive medical care, she declares.
The causes and effects of minorities' mistrust of science and research are many, observers say. They extend beyond such obvious examples as Tuskegee and could have repercussions well into the future.
For example, even today, there are claims that scientific evidence exists to back up theories that intelligence has a genetic basis. "You have to look at how people perceive minorities," offers Smith. "Take The Bell Curve [R. Herrnstein, C. Murray, New York, Free Press, 1994], that talks about intelligence, mainly of African Americans, and [that] it's lower. We're inferior. You have scientists or even educators saying this."
The Bell Curve's authors, Richard Herrnstein of Harvard University and Charles Murray of the American Enterprise Institute, used studies that connect genetic traits and social behavior. Their controversial conclusion was that many welfare programs do not work because they don't address differences in intellectual ability between social groups. Herrnstein and Murray were sharply criticized for drawing links among welfare policy, intelligence, and genetics, but they insisted that their conclusions were scientific.
Smith continues, extrapolating from the book's arguments: "I would be mistrustful of going to someone who would automatically assume that because of the color of my skin, I'm inferior and shouldn't receive the best medical care."
Allen agrees with Smith, citing some researchers' past claims that black people are genetically inferior, with lower intelligence and moral aptitude. "It may be hard for the general public to appreciate the extent to which these beliefs have taken a toll on people of color, making them less willing to open their ears and eyes to new developments in medicine and science."
PAST MISTAKES: Penn bioethicist Arthur L. Caplan notes there has been historical mistreatment of minority subjects.
'PATRONIZING': Many in activist Zora Kramer Brown’s cancer group mistrust scientists.
She wants African American women to have greater input in debates over health policy. "They are not the poor, uneducated, 'I don't understand what the procedures are all about' kind of women we tout as not receiving information," Brown says of her group's members. "They are willing to participate in clinical trial research. [But] they distrust most scientists because most of them conducting the research are not of African American descent."
"What's coming out of the research are not high priorities among some of the communities that first want basic health care," Boozang states. "How many black women do you know who are pursuing artificial insemination or in vitro fertilization? That technology is being used by a very discrete group of the population that is substantially moneyed and white."
Boozang believes that science needs to realize that minority communities often feel used. "If you're asked to be a subject of research, but then aren't going to reap the benefits, why should you participate? It ultimately goes back to the structure of the health care system and the lack of access to it."
Even among non-ethnic minorities, such as people with disabilities, mistrust is present. "Families of individuals who are institutionalized certainly carry with them a suspicion that investigation of the causes of their disability are motivated as much as or more for the benefit of the researcher than for the family," says the Shriver Center's Reilly.
In the 1920s and 1930s, according to Reilly, many state mental institutions conducted involuntary sterilization programs. More recently, it was revealed that in post-World War II Massachusetts, researchers secretly fed radioactive materials to institutionalized children.
"What is a family to do today when it hears that years ago, researchers from prestigious institutions gave their children radioactive materials in their breakfast cereal without informing them what they were doing?" Reilly asks. "It doesn't matter that the amount of radioactive material was so small as to be arguably harmless. What matters is that it was done in a deceptive fashion. Even though that happened a long time ago, the revelation is recent and reinforces old stereotypes."
There is no shortage of suggestions on how to rebuild trust. The best way, most observers agree, is for the science community to increase its number of minority researchers. "To get more minorities involved in research [as subjects]-whatever population you're dealing with-you have to have researchers and physicians who are part of the minority group," Bowman contends. "They'll trust them more. Cross-cultural research is very, very difficult."
Murray points out that in the wake of the Tuskegee revelation, minorities were encouraged to pursue careers in the sciences so they could better explain scientific research to the community. "Those things have led-I think, although documentation is another matter-to more minorities being involved in research," he states.
Indeed, current documentation indicates that more needs to be done to correct the problem. According to a December National Science Foundation study entitled "Women, Minorities, and Persons with Disabilities in Science and Engineering: 1996" (http://www.hsf.gov/sbe/srs/stats.htm), minorities and women take fewer high-level science and math courses in high school; earn fewer bachelor's, master's, and doctorates in science and engineering; and are less likely to be employed in science and engineering jobs than white men.
"The representation of minorities in the hard sciences is so minimal that you don't have a [minority] perspective there," contends anthropologist of education Olga V^Çsquez. "There's another explanation [for the lack of minorities in science], one would think-the idea that they're reluctant to come into the sciences." However, adds Vásquez, who is an assistant professor of communication at the University of California, San Diego, and a visiting fellow at the Center for Chicano Studies at the University of California, Santa Barbara, "if you look at the education preparation of minorities, you find that they come from the schooling systems with the least resources and . . . preparation in the course offerings. You have highly talented minority students coming out of high school [but] not being prepared to get into college."
STILL PRESENT: Harold Freeman, chairman of the President’s Cancer Panel, says researchers must face "an underlying element of distrust."
Caplan would like to see greater minority involvement on experimentation committees, and more studies measuring minorities' attitudes to determine exactly why and to what extent mistrust exists. In addition, he cites the need for researchers themselves to conduct community-outreach programs. He also calls for greater communication, especially electronically via the Internet, to address the questions and fears of young people. (The Center for Bioethics' World Wide Web site is http://www.med.upenn.edu/bioethics.)
"We need to understand [mistrust] is there and to teach our students when they come through school that it's there and why it's there," Lynn states. "There are legitimate historical bases for misconception and wrongly held beliefs. The government isn't clever enough to have invented HIV, . . . but I have learned to understand the basis of such thoughts."
Many observers agree that more work must be done to undo the damage. Smith notes that in years past, career counselors, still influenced by the stereotype that minorities had less aptitude for science and mathematics, steered them into other paths.
"There are probably many physicians or scientists who can tell you [that] when they were coming along in school, they were probably directed to pursue another career," she observes. "My husband [a physician] is one of them."
Allen is optimistic that the situation will improve. "Once you have more African American Ph.D.'s in the sciences, more African American doctors, nurses with responsible positions, and a government that is more responsible and responsive to the health care needs of poor people and people of color, this . . . distrust of the health care profession and science will begin to disappear." She says, for example, that her younger family members are more accepting of science than are her elderly relatives in Georgia. "Generations are changing."
There are indications that Allen's predictions may come true. Surveys conducted in three states last year by Research!America, an Alexandria, Va.-based group promoting biomedical research, indicate that African American and Hispanic people generally support research at levels about equal to the overall response. The major exceptions involve questions about the use of animals and about research into gene therapy and xenotransplantation.
OWNING UP: University of Illinois’ Shiriki Kumanyika wants scientists to admit past mistakes.
Sykes of Quality Research Systems feels that the pharmaceutical companies with which his firm deals will achieve success by clearly informing their potential research subjects of exactly what the research involves. "In order to really deal with this issue of clinical trials in minority communities, I think the industry must realize there must be education first. Once we educate the communities, then I truly believe it will be easier for companies to involve minorities in clinical trials."