By Lisa Seachrist
WASHINGTON — The National Institutes of Health (NIH) does a good job setting its research priorities, but the Bethesda, Md.-based agency needs to make a greater effort to include the public in these decisions, an Institute of Medicine (IOM) report says.
The IOM is part of the National Academy of Sciences, which was authorized by Congress to conduct a study of NIH research spending.
The report maintains that while the decisions the NIH makes in allocating its $14 billion budget are scientifically sound, including more public input may improve the criteria for selecting research priorities and may make those priorities more widely accepted.
"Some of the public has concluded, incorrectly we believe, that NIH cares more about curiosity than cures, more about fundamental science than clinical application," said Leon Rosenberg, a Princeton University molecular biologist and chairman of the IOM committee that produced the report.
The IOM calls for more ordinary citizens on the NIH panels that determine research priorities and for an office of public liaison. In addition, the IOM's report suggests the NIH, in setting priorities, use more health data on the societal burdens of various diseases, and calls on the director to coordinate priorities and evaluate how well the agency adheres to them.
Research allocations by NIH have come under fire from advocacy groups and members of Congress for spending too much on some diseases and not enough on others.
The report notes that while many disease-specific advocacy groups have in the past sought an increase in overall funding for NIH — "the proverbial rising tide that lifts all boats" — AIDS activists and breast cancer activists have been extremely successful in achieving large increases in the NIH research budget for those diseases.
As a result, other advocacy groups have begun to use the same tactics, which the report says leads to the perception NIH funds research based on which advocacy groups are most active.
In fact, sometimes it has been Congress that has responded to disease-specific lobbying efforts. For example, the report points out that in 1993, Congress increased funding to the National Cancer Institute (NCI) by $28 million but in the process earmarked $77 million to fund breast, ovarian, cervical and prostate cancers as a result of advocacy pressure.
The NCI offset the discrepancy by cutting funding for basic research and research on leukemia, non-Hodgkin's lymphoma and cancers of the colon, bladder, kidney and brain. In addition, the NCI cut public education efforts and chemoprevention that year.
The report suggests the NIH hear such interest groups by including members on advisory panels.
"We certainly do not expect advocates for particular diseases to cease and desist because of this report," Rosenberg said. "But, if these recommendations are implemented, there will be a fairer and broader dialogue in which NIH will consider and respond to public input." *