More than three decades after the shutdown of the
notorious Tuskegee study, a team of Johns
Hopkins physicians has found that Tuskegee's legacy of
blacks' mistrust of physicians and deep-seated
fear of harm from medical research persists and is largely
to blame for keeping much-needed African-
Americans from taking part in clinical trials.
In a report published in the journal Medicine
online Jan. 14, experts in the design and conduct
of medical research found that black men and women were
only 60 percent as likely as whites to
participate in a mock study to test a pill for heart
disease. Results came from a random survey of 717
outpatients at 13 clinics in Maryland, 36 percent of whom
were black and the rest white.
The survey is believed to be the first analysis
showing that an overestimation of risk of harm
explains why blacks' participation in clinical trials has
for decades lagged that of whites. The results
come at a time of increased recognition of racial
differences in disease rates and treatments.
Researchers point out that some kidney diseases, stroke,
lung cancer and diabetes all progress more
quickly in blacks and kill more blacks than people of other
"There is enormous irony that without African-American
subject participation in clinical trials,
we are not going to have tested the best therapies we need
to treat African-Americans," said Neil R.
Powe, study senior researcher and a Johns Hopkins internist
and epidemiologist. "So long as the legacy
of Tuskegee persists, African-Americans will be left out of
important findings about the latest
treatments for diseases, especially those that take a
greater toll on African-Americans and
consequently may not have ready or equal access to the
The infamous Tuskegee study, named after the Alabama
town where its participants lived,
enrolled several hundred sharecroppers, mostly poor
illiterate blacks, into a study they believed would
help treat their syphilis infections. Instead, health care
workers denied them available drugs to cure
the disease in a secret plan to study the "natural course"
of unchecked syphilis. The health care
workers were predominantly white.
The government-sponsored experiment ran for 40 years
until a leak to the press exposed the
deception and the study was shut down in 1972. The
resulting public outcry and federal clampdown led
to the establishment of federally regulated committees at
all American academic centers, so-called
institutional review boards, to oversee how clinical
studies are designed and to ensure informed
consent of all patients.
When the Johns Hopkins researchers probed their survey
subjects about the perceptions and
beliefs behind their decision to participate or stand back,
they found that blacks harbored a strong
distrust for physicians when compared to whites. The
specifics were as follows:
* 25 percent of blacks thought their physician would be
willing to ask them to participate in a
study even though the study might harm them, while only 15
percent of whites thought the same;
* 28 percent of blacks, but 22 percent of whites, felt
their physician would willingly expose them
to unnecessary risk;
* 58 percent of blacks, and 25 percent of whites,
thought that physicians use medications to
experiment on people without the patient's consent; and
* 8 percent of blacks did not feel comfortable about
questioning their physician, while 2 percent
of whites were similarly inhibited.
When researchers removed from the analysis respondents
who had feelings of distrust toward
physicians, the numbers of blacks and whites willing to
participate in medical research became the
same, at roughly a third of those asked.
"Our results strongly suggest that the problem is the
lack of trust and that it may be fixable
by communicating better with patients and taking actions
that improve mutual respect and
understanding," said Powe, a professor at the School of
Medicine and director of its Welch
Center for Prevention, Epidemiology and Clinical
What is not known, Powe said, is how much of the
problem is anchored in blacks' mistrust of
society in general and how much of it is influenced by
interactions with physicians.
Powe adds that historically low numbers of minority
physicians might also play a role in fostering
mistrust. Currently, he points out, 12 percent of the U.S.
population is black, but only 4 percent of
physicians are black. Other studies done by the Johns
Hopkins team show that having a physician from
the same race fosters patient trust and improves health
care satisfaction scores. At Johns Hopkins,
the percentage of black medical students since 2000 has
ranged between 8 percent and 11 percent.
Joel B. Braunstein, a research fellow at Johns
Hopkins, who led the study, says the
responsibility for improving the situation rests with
physicians and medical schools to reduce the
disparity "for the benefit to all of our patients, not just
African-Americans but also for medical
science in general."
Aside from the personal strengthening of relationships
between physicians and patients during
checkups, Braunstein, now a consultant to scientists and
investors starting biomedical companies,
recommends more institutional programs, such as cultural
competency programs. Community projects
to promote interaction of academic medical center staff
with local neighborhood and business groups
might also help, he says.
"The academic medical system exists to help people
through discovery and testing of new
treatments, and unless people — regardless of race
— see research conducted on all types of patients
and through their own eyes, they won't necessarily believe
it," said Powe, whose team plans further
research into what types of intervention — physician
or patient training, or various community
programs — work at improving trust in physicians.
Results from the survey, in which a total of 1,440
people of all races were asked to fill out a
questionnaire while they waited for a regularly scheduled
checkup, were later broken down so that the
views of only blacks and whites could be compared. Every
patient was asked by a physician, either
white or black, to participate in the mock trial, but only
after an in-depth explanation of the risks and
benefits involved in joining, including the type of drug
under study, possible drug side effects, study
length and rules for participants. It was after this
vigorous process of simulated informed consent
that patients were asked to join up and to explain their
rationale for participating or not participating.
The study, which took place from April to October
2002, was made possible with funding
support from the Robert Wood Johnson Foundation.
Other investigators in this research were Noelle
Sherber, Steven Schulman and Eric Ding.