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