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For NIH watchers: An article "NIH Finds That Congressional Largesse is Followed by Congressional Scrutiny" appeared in the Jan. 22 issue of the "Chronicle of Higher Education." It included a number of references to Parkinson's research, the Udall Bill, and a statement by Joan Samuelson of PAN. Full text of "The Chronicle" is only available with a subscription, so I will post some of the pertinent sections. Anyone wishing to read the full article, should be able to find the print version at any college library. The Chronicle says it has a readership of over 400,000. Considered along with recent events such as Richard Pikunis' Senate testimony, and President Clinton's mention of Parkinson's Disease in his State of the Union Address - is anyone else beginning to feel just a little less invisible these days? The article starts by describing the $2 billion increase to the NIH for 1999 . . . "Today, Congress's largesse toward the N.I.H. has become a lightning rod for oversight. Lawmakers are demanding an accounting of everything from the agency's annual spending on Parkinson's-disease research to its management of the $310-million clinical-research center scheduled to open in 2001 on the agency's Bethesda, Md., campus. "The N.I.H.'s $15.7-billion budget is rich with opportunities for new research, but it also comes with obligations to provide better accountability: Mr. Domenici's Senate committee may hold a hearing this spring on the agency's use of the new funds, for instance. The agency, well-respected and relatively free of Congressional earmarking of research funds, could invite increased scrutiny and budget directives if management of the new money goes awry. ". . .The agency's blueprint for spending the money includes sharply increasing the number of research grants, Dr. (Harold) Varmus said. The N.I.H. will also use the windfall to exploit discoveries in genetics research; create new training and grant programs in clinical research; offer awards to scientists in allied disciplines such as chemistry, physics, and engineering; and find ways to reduce health disparities among different segments of the U.S. population. "We've done a terrific job of anticipating the increase for 1999, and our plans reflect that," Dr. Varmus said. (Following this is a discussion of the lack of Congressional oversight of the NIH, and of some past controversies.) ". . . Daniel S. Greenberg, a visiting scholar at John Hopkins University.., who is the founder and a past editor of the newsletter Science & Government Report, said the agency's record may appear clean because no critical examination of the N.I.H. has been made. "There have been no hearings in which people unburden themselves of concerns about the agency, but you do hear within the science community talk of there being cliques on N.I.H. peer-review sections that dominate certain areas of research, or about how certain universities have an inside track to N.I.H. funding," Mr. Greenberg said. "These issues have never been explored. And the point is not so much about rooting out scandals, but about determining whether or not we are getting the best use of our money." "But N.I.H.'s unscrutinized ways soon may change. In 1997, Congress ordered an independent audit of the agency's administrative and management practices. That same year, the lawmakers requested an explanation from Dr. Varmus about how the agency determined its research priorities, and asked the Institute of Medicine for an assessment of the agency's decision-making process. That report, released last July, concluded that the N.I.H. should seek broader public advice in deciding how to spend its money (The Chronicle, July 17, 1998). Sen. Bill Frist, a Republican from Tennessee, will be monitoring the agency's adoption of recommendations contained in the Institute of Medicine report, "Scientific Opportunities and Public Needs: Improving Priority Setting and Public Input at N.I.H." Last spring, during N.I.H.-budget hearings, lawmakers-including some hard-core N.I.H. supporters-hammered the agency with very detailed and pointed questions about how a budget increase would be spent. "Some Congressional casting about has already netted troubling findings. Rep. Fred Upton, a Michigan Republican, asked the agency for its fiscal-1997 list of research projects on Parkinson's disease. He distributed that list to a group of scientists who specialize in Parkinson's. The N.I.H. claimed to have spent $89-million that year on the disease, but Representative Upton's panel of scientists concluded last fall that 40 per cent of the studies on the agency's list had little to do with finding the cause, pathogenesis, or a treatment of the disease. Joan Samuelson, the president of the Parkinson's Action Network, said that that finding showed the need for increased Congressional oversight. She is especially concerned about whether or not the N.I.H. will fully support the provisions of the Morris K. Udall Parkinson's Research Act, which directed the agency to spend $100-million on the disease in fiscal 1998. Representative Upton has requested another list for fiscal 1998, which will be similarly analyzed. Some watchdogs said such surveillance was long overdue. "The N.I.H. has a reputation, in science-policy circles, as being rather haughty when it comes to answering questions about its decisions," said Richard E. Sclove, executive director of the Loka Institute, a non-profit research and advocacy group. "I find it troubling that there is no independent group overseeing the agency." But others caution against Congress being too zealous in its pursuit of the N.I.H." (The article concludes with a quote by Albert Teich of the American Association for the Advancement of Science, warning against micromanagement and disease-specific funding. This article is followed by an interview with Dr. Varmus. Chronicle of Higher Education http://chronicle.com Section: Government & Politics Page: A24