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Government prevention research hit list’ draws protests from scientists
Recent NIH hit list’ is unprecedented, they say
HIV-prevention researchers say the current administration and Congress are undermining scientifically sound behavioral research through political scrutiny of investigators who are working to understand the transmission of a deadly epidemic.
The most recent assault on HIV behavioral research came in October when more than 150 investigators discovered that their names were on a list of about 250 questionable grants circulated by Republican members of Congress and the National Institutes of Health (NIH).
Called a "hit list" and "scientific McCarthyism" by U.S. Rep. Henry A. Waxman (D-CA), the list included the names of HIV investigators and other scientists who have worked in the areas of sexual behavior and HIV risk taking.
Some members of Congress, scientists, and professional organizations quickly denounced the NIH list and said they hoped that such deliberate intimidation would not have a chilling effect on HIV and behavioral research.
"It’s hard enough to get an NIH grant without having people worrying about whether the grant title or abstract will raise eyebrows," says Kenneth Mayer, MD, professor of medicine and community health at Brown University in Providence, RI. Mayer is on the board of the American Foundation for AIDS Research (amfAR) of New York City, an organization that encourages and helps to fund AIDS research, and also is the medical research director at Fenway Community Health in Boston, and is an infectious disease specialist at Miriam Hospital in Providence.
"Particularly with HIV people, who often are socially or economically disenfranchised, this is not easy research to do," he says. "So having this kind of ideological intrusion is not going to help us solve the AIDS epidemic, and it only wastes time." Mayer has collaborated on some of the projects on the NIH list, although his own name was not on the list.
This well-orchestrated attack on HIV behavioral research is unprecedented, according to HIV prevention scientists and prevention service providers.
"I don’t recall anything of this magnitude and this almost very deliberate attempt to stifle research and to politicize research," says Ronald Johnson, associate executive director of the Gay Men’s Health Crisis in New York City. "This is really unprecedented from our perspective," he adds.
A case of micromanagement?
Mayer concurs. "I’ve never seen this kind of micromanagement or manipulation of specific grants and investigators on specific lists," Mayer says.
One scientist, who occupied 12 lines on the list with a half-dozen projects, says it would be a huge mistake if Congress continues to attempt to micromanage NIH-funded science.
"People on the list are unfairly singled out for work that turns out to be meritorious," says Tom Coates, PhD, a professor of infectious diseases at the David Geffen School of Medicine at the University of California, Los Angeles (UCLA). "It seems to me that the work is being singled out because of titles and populations, and it has nothing to do with anything about scientific merit."
Some professional organizations have come to the defense of researchers.
"We think this type of research is critical research, very important public health research, and what NIH chooses to fund ought to be based on what NIH scientific committees deem good science, sound methodology, and relevant scientific questions, and those issues ought to be the only determinants," says Rhea Farberman, director of communications for the American Psychological Association (APA) of Washington, DC.
"Specific researchers have been targeted for interrogation, and their subjects of inquiry denigrated," Judith Auerbach, PhD, amfAR vice president for public policy, said in a statement released shortly after the list’s existence was made public. "Solving the mysteries of the body, human behavior, and the natural world that surrounds them demands faithful adherence to intellectual curiosity alone, not to politics, opinion polling, or prejudice."
The list, which she and some media reports attributed to the Traditional Values Coalition, an organization that represents churches and a fundamentalist Christian political agenda, included some oddities, such as a study on post-exposure prophylaxis and a training grant for postdoctoral fellows. Also, some names on the list were scientists who died years earlier, including Evelyn Hooker, known for her groundbreaking work in the area of homosexuality.
The Center for AIDS Prevention Studies in San Francisco had about 20 scientists on the list, says Cynthia Gomez, PhD, co-director of the center and an assistant professor at the University of California, San Francisco (UCSF).
After the initial shock wore off the center’s researchers renewed their personal and professional commitments to HIV research, she says.
"We have even a stronger commitment now," Gomez adds. "Some of these scientists who were not on the list but who do similar research said, Maybe we should be put on the list to highlight the importance of the research that’s being conducted here.’"
Some of the researchers on the list were contacted by NIH and told that the studies for which they had already received funding were being further reviewed and they might want to submit an updated abstract, she says.
"I believe what was happening is there was an attempt when the list became known to explain the significance of each study on the list," Gomez explains. "Some institutes could do this by providing an updated abstract."
The request came in the form of "Can you give us succinct paragraphs on the significance of your study?" she says.
Gomez, who has been an NIH reviewer, says that any additional scrutiny of research grants that have been approved is problematic, particularly if the scrutiny is of a philosophical nature.
"I don’t know if there’s a clear understanding by the general public on how rigorous the grant-review process is. I’ve been a reviewer for NIH, and we have strict criteria by which we allow any research to move forward, and one of the principles any study has to pass is their significance in terms of advancing the cause of knowledge," she says.
Some involved in HIV-prevention work say that the people who made up such a list and who have used it to intimidate scientists are not concerned with advancing knowledge and science.
"We see to a certain extent these attacks as cousin to the attacks on HIV-prevention providers in the last three to four years," says Mark McLaurin, associate director for prevention policy with the Gay Men’s Health Crisis.
"One of the main avenues of attack against HIV-prevention programs has been that there’s no science behind them, no scientific basis for interventions," he says. "So on one hand, they are attacking the interventions as not being scientifically based; and on the other hand, they are attacking the scientists who are conducting the research that would provide the scientific basis for HIV-prevention interventions."
Even HIV-prevention organizations that have not been targeted have become sensitive to the changing ideological environment.
Founded in 1989, the Black Educational AIDS Project of Baltimore is a small prevention project run with a $400,000 budget that provides prevention interventions to high-risk populations, such as male commercial sex workers. In the last few years, the organization has been concerned that its funding will end because there appear to be fewer grants for which its work would qualify, says J. Lawrence Miller, PhD, executive director.
Miller, who has a theology background, insists that the organization’s prevention projects include abstinence messages, but he acknowledges that it would be futile to make that the only message when one is dealing with young, black, and homeless sex workers who are in and out of jail for the hustling.
"I’m a black, gay Republican, who is HIV-negative, and [the action against HIV-prevention programs and research] really does surprise me," he explains. "I’m very, very surprised that the public health agenda seems to be driven more by feeling than by science."
Since President George W. Bush took office, the HIV-prevention community has noticed changes in how prevention organizations and prevention researchers have been treated. First, there were federal audits of specific prevention programs that target men who have sex with men (MSM), and this was followed by a congressional floor debate in which Rep. Patrick Toomey (R-PA) asked for a vote to include an amendment that would stop NIH funding of five ongoing projects, most of which dealt with HIV risk behaviors. The amendment failed by two votes.
Since so much of the research presented on the NIH list involved MSM populations and other high-risk HIV populations, a more cynical view of the political attacks on HIV prevention research would be that the attackers don’t care about the impact of AIDS on these populations because the right wing finds them unacceptable, says Daniel Ciccarone, MD, MPH, assistant professor in family and community medicine and anthropology, history, social medicine at UCSF.
Ciccarone, who was not on the list, says that the very existence of such a list has had a chilling effect among HIV investigators and has changed the way researchers write their grant proposals and abstracts.
Passing political muster
"There’s a lot of hearsay of how to get around [public scrutiny]," he says. "So we’re no longer doing studies of MSM; we’re doing studies of men and HIV risk." The point is that scientists are changing titles of their research so that when the titles are published in the Congressional Record they will pass political muster, Ciccarone says.
He admits to making changes to one of his own grant proposals to make sure it is appropriate for the new political ideology.
Coates says he won’t make any changes to future grant proposals. "If we start doing that in response to this kind of pressure, then we’re dead in the water," he says. "We’ve got to do the work that’s important, and I’m very committed to doing that."
The other danger is that researchers who haven’t worked in the area of HIV behavioral study but are encouraged to do so by a seed grant from a group, such as amfAR, now will decide not to make the switch, Mayer says.
"Some people who may be uncomfortable with that process, when they have two to three ideas or directions they might do work in might pick the easier one because they don’t want to be embroiled in controversy," he says.
Ideologically, the attack on HIV-risk behavior research sets the entire field back several decades to the very old arguments that if you study or put any money toward studying problem behaviors then you are, in essence, liberalizing the problem and giving the behaviors more credence, states Ciccarone.
"We show time and time again that research sheds light on how risk happens in certain groups, and if you want to address the problem, then you have to address it in a culturally savvy way," he adds. "The head-in-the-sand approach, which we’ve seen before, doesn’t work."
So the greatest danger from the political attacks on HIV prevention research is that it will prevent investigators from studying and creating prevention social marketing tools that are the most effective, Ciccarone says.
"We’re now developing a much more culturally savvy approach to studying high-risk populations, and it’s going to be a lot more effective," he says. "But to do that, you need to get in close to risk populations and understand them well."