Box Turtle Bulletin

“The Chilling Effect”: Did GOP Politics Stifle AIDS Prevention Research?

In a report published in the online open access peer-reviewed journal PLoS Medicine, Rutgers University’s Joanna Kempner explores the question: How do researchers react when their work gets wrapped up in political controversy?

The controversy began in July 2003, when then Congressional Representative Patrick Toomey, a Pennsylvania Republican, proposed an amendment to the 2004 NIH appropriations bill that would rescind the funding of five NIH grants—four of which examined sexual behavior, including studies of transgendered Native Americans, undocumented Asian sex workers, the sexuality of aging men, and the relation of mood to sexual risk taking. Toomey argued that these studies were “much less worthy of taxpayer funding” than research on “devastating diseases” and asked publicly, “who thinks up this stuff?”. The amendment failed to pass the House by two votes.

The controversy didn’t end there. In October 2003, several Republican members of House and Senate committee which oversee the National Institutes of Health asked NIH director Elias Zerhouni to explain the “medical benefits” of ten NIV grants, including the five targeted by the Rep. Toomey. But the next day, the committee staffer responsible for forwarding the list of grants to Zerhouni’s office sent the wring list. He send a longer list of more than 250 grants.

We learned later that this longer list was composed by the Traditional Values Coalition. Republicans apologized for the accidental distribution of this list, but the damage was done. Zerhouni saw the shot across his bow and ordered a review of each of the NIH grants in the longer list. The review found that each of the studies were scientifically legitimate, and in January 2004, Zerhouni wrote to Congress saying, “the constant battle against illness and disease…cannot be limited to biological factors but has to include behavioral and social factors as well”

All of these grants retained their funding, but this episode touched off a very serious concern. Would this attempt at a witch hunt stifle sexuality research that could have potentially important implications for HIV prevention programs?

Kempner interviewed 82 of the 163 principle investigators caught up in the controversies and found that the controversies did appear to have a chilling effect:

• 55% agreed or strongly agreed that “the NIH is less likely to fund research about sexual behaviors because of the current political climate.”
• 79% agreed or strongly agreed that “funding decisions at the NIH are more political under the Bush administration than they were under the Clinton administration.”
• 71% agreed or strongly agreed that “the political controversy created a ‘chilling effect’ in research, dissuading scientists from studying controversial issues.”

But on the other hand:

• Only 34% agreed or strongly agreed that “I am less likely to receive funding from the NIH because of this controversy.”
• and 79% agreed or strongly agreed that “no amount of political controversy would dissuade me from conducting HIV or sex-related research.

Why the apparent contradiction? According to Kempner, many of these researchers felt safe because they learned to self-censor in order to stay in the NIH’s good graces.  When writing grant applications, more than half said they omitted words like gay, lesbian, bisexual, sexual intercourse, anal sex, homosexual, homophobia, AIDS, barebacking, bath houses, sex workers, needle exchange and harm reduction — all subjects which must be studied in order to improve HIV and STD prevention programs.

Most researchers believed that omitting these terms had only a “cosmetic effect” on their research. But they also noted that by obscuring the contents of their work, it became much more difficult for other researchers to find important cutting edge research in these very important topics.

But the worst of it was this: nearly a quarter reported that they either re-framed their studies to make them more politically viable or dropped them altogether. A smaller number actually changed careers as a result of the controversy.

This study only questioned those who were directly involved in these controversies, researchers who, as Kempner notes, were “already successful enough to serve as PIs [principal investigators] in their own NIH grants.” But she goes on:

The broader implications of political controversy for the research community — for example, funding agencies, graduate students, junior researchers and other researchers who work in HIV prevention but escaped the list — remain unknown.

And because researchers are now removing “red flag” words in their grants, “Congressional oversight has, in this case, had the unintended consequence of making science less transparent.”