Suspicion still simmers just under the surface

For decades, residents of the poor neighborhood surrounding Johns Hopkins Hospital have had an uneasy relationship with the billion-dollar institution at its center. They viewed it as elitist, more interested in medical research than in their care.

While the hospital has worked to enhance relations, spending millions on community support and to serve poor patients, recent controversy over a study conducted by the Johns Hopkins Bloomberg School of Public Health and the Kennedy Krieger Institute has illuminated historical tensions.


In 2000, researchers spread fertilizer made from a combination of human and industrial wastes on the lawns of nine East Baltimore homes in an effort to help combat lead poisoning. Hopkins says the fertilizer was a common, commercially available compost that did effectively mitigate lead and that participants and the community were fully informed.

But the National Association for the Advancement of Colored People has called for state and federal officials to launch a criminal investigation, saying the study could be viewed as an experiment conducted at a cost to the health of the mostly poor, black families living in the area. Maryland lawmakers have urged the U.S. Department of Housing and Urban Development to investigate why it funded the study.


"This particular story about the sludge unfortunately adds to the continuing distrust of Hopkins," said Michael Eugene Johnson, state director of the Black United Fund, which has joined forces with the NAACP on the issue. "This may be an honest, proper study that was done, but the shroud of secrecy, the fact that information is not being shared, it has revived this concern."

Johnson said some people living in the shadow of Hopkins remain wary of the institution, even while recognizing it as a premier research hospital.

"It's always been known as Johns Frankenstein to a lot of us, even though we are well aware that Johns Hopkins is one of the finest research institutions in the world," he said. "People would say, 'Don't go past there at night, you might come up missing.'"

Homer E. Favor remembers reluctantly carrying his 3-year-old son to the emergency room at Johns Hopkins Hospital.

It was 1960, and a father's fears were exacerbated by the fact that blacks and whites were treated in separate wards. Worse, were the unfounded rumors that circulated among Favor's friends and neighbors: at Hopkins they made guinea pigs out of black patients.

His son received life-saving surgery to remove his appendix, and over the years, Favor became good friends with some of Hopkins' most respected doctors and administrators.

But the "ghost stories" among some African-Americans about medical research at Hopkins and other research institutions in minority communities remain.

"There are still people I know who say, 'Don't take me to Hopkins. ... Something bad is going to happen to me there,'" said Favor, 84, a civil rights activist and retired dean at Morgan State University, who has lived in the East Baltimore community near Hopkins for more than 40 years.


African-American skepticism of medical research was inflamed in the infamous Tuskegee Study, in which researchers for the U.S. Public Health Service allowed syphilis in black men in Alabama to go untreated.

The study, begun in the 1930s, continued for 40 years. Hopkins was not involved in that study, but the incident contributed to widespread suspicions about medical research in general.

When Dr. Levi Watkins Jr. arrived at Hopkins 38 years ago, the hospital had only recently become integrated, abandoning the practices of separate wards, blood banks, morgues and cafeterias for blacks and whites. He and other interns and residents lived in buildings encircled by a fence, designed to keep the local - mostly black - community out, he said.

It was not what Johns Hopkins himself had envisioned. In a letter to trustees upon founding the institution, Hopkins urged the hospital to be inclusive of minorities and the poor, making service to these groups a crucial part of its mission, Watkins said.

In fact, the second patient admitted to the hospital when it opened in 1889 was an African-American. That was a time when many other hospitals in Baltimore did not admit blacks.

"The problem with that was America," said Watkins, associate dean at the Johns Hopkins University School of Medicine and a professor of cardiac surgery, who has made diversity at the institution his mantra. "We were giants in medicine, not so giant in humanitarian efforts as much as race was concerned, even though Mr. Hopkins had instructed us to be so."


Watkins maintains Hopkins has worked to ease community discomfort. The hospital has 82 community programs designed to engage the neighborhood, examining such issues as teen pregnancy prevention, sickle cell anemia and crime and violence, he said.

Officials also noted that Johns Hopkins Hospital, as well as the School of Public Health, have devoted significant resources to East Baltimore and the city overall. In fiscal year 2007, the institution gave $100 million in community benefits, according to Hopkins spokesman Gary Stephenson. The hospital provided $146 million in uncompensated care - typically care for poor, uninsured patients. Stephenson said the "vast majority of this care went to Baltimore City residents."

"Johns Hopkins is deeply committed to its community and it has supported that community with money, resources and time," Stephenson said.

He said Johns Hopkins has never been involved in a Tuskegee-like study, in which subjects were harmed or otherwise exploited. And Watkins defended Bloomberg researchers, saying he is certain they had no racial motives.

"The problem however, is the sensitivity of it," Watkins said.

Bloomberg Dean Dr. Michael Klag agreed that the black community had historical grounds for suspicion about researchers' motives. But Klag said the institution has a "pretty good relationship with the surrounding community."


And he said the researchers had worked closely with community groups to set up the study and make sure it was done ethically.

"It was done as it should have been done," he said.

The study's leader author, Mark Farfel, a former associate professor at the Kennedy Krieger Institute and Bloomberg, has been the subject of favorable and unfavorable press over the years.

In 2001, the Court of Appeals likened a lead paint study Farfel had conducted years before to the Tuskegee experiments.

Farfel's study was an attempt to identify an affordable measure that could reduce the danger of lead-paint poisoning faced by children living in old homes. The study focused on more than 100 families who were enticed to live in homes that had varying levels of partial lead abatement as part of a study of whether cheaper methods of containing lead would keep the toxin out of children's bodies.

In reversing a lower court decision dismissing the suit, the Court of Appeals found researchers failed to warn families that their children faced a health risk if they continued to live in the homes. The court also found that the researchers did not inform the families of the youngsters' elevated blood-lead levels in a timely way.


Klag argued that in the compost study, the researchers were actually trying to help the community, not exploit it. "It was done in East Baltimore because we were having an epidemic of lead poisoning there," he said. "The study was done in response to the needs of the community."

Klag said he didn't think most people in East Baltimore felt alienated from Hopkins: "By and large, people are worried about getting a good education for their kids, having a good job. I don't think they have a lot of hostility directed toward the hospital. Many people recognize that Hopkins does a lot of good things in the community."

However, Hopkins and the East Baltimore Community Development Inc. have been criticized for clearing dozens of acres and displacing residents to make way for an $800 million biotechnology park.

Donald Gresham, president of the Save Middle East Action Committee, which represents homeowners, said the hospital has not done enough for the community.

"Most people's impression is they are really hurt and disappointed," Gresham said. "Most people in East Baltimore were born at Johns Hopkins. Their doctor is at Johns Hopkins. The community is not happy about what Johns Hopkins is doing."

Dr. Al Sommers, who was dean at JHSPH from 1990 to 2005, said decades-long tensions have eased significantly in recent years.


Like Klag, Sommers argued that Hopkins has helped East Baltimore. "Hundreds if not thousands of people in East Baltimore work there. Hopkins has been an engine for jobs, employment, education, for people bettering themselves," he said.

Battling community suspicion is not unique to Hopkins but is an issue that research institutions nationwide face, said Watkins.

"There is distrust here as there is of most research institutions in communities of color. This is an American issue," he said. "I don't hear the kinds of concerns I used to, but that doesn't mean that people don't still believe them."

Staff reporters Stephen Kiehl and Dennis O'Brien contributed to this article.