maintains that research funding is
unfair and irrational because it fails to
account for such factors as the financial impact and prevalence of diseases.
Some view his position as a frontal
attack on AIDS funding and a reflection of homophobic attitudes, charges
dismissed by Istook's supporters.
Istook says: "Federal funding for
medical research is skewed, failing to
focus on those diseases that cause the
most suffering and death in America.
It also doesn't focus on those illnesses
that afflict the most citizens... or cost
the most to treat. The National
Institutes of Health seems to adjust
its priorities to respond well to the
political and media attention focused
upon AIDS and HIV.
"Something is wrong," Istook
argues, when NIH devotes only $1,129
per death from heart disease, the
nation's number one killer, and $723
per death from stroke, while spending
$4,525 per cancer death, $4,995 per
diabetes death and a whopping
$31,381 per death from AIDS/HIV.
The NIH's Varmus opposes allocating funds based on "body count." He
says the NIH allocates funds based on
the scientific opportunity posed by
research on a particular disease and
public health need. "The point is,
counting the dead is only one way of
assessing public health importance," he
says. "There is no metric for measuring
public health impact that can be correlated in any simple way with the
research opportunities."
Making sense of science
Science is spooky. And fascinating. Scary. Inspiring.
And sobering.
And so, confronted with mind-boggling scientific discoveries, we often don't know quite how we feel. Which
makes science a fertile realm for the novelist. When science seems to advance beyond imagination, we turn to
the imaginations of storytellers to help us sort out the
human dimensions of what fascinates us— and scares
us.
The current literature of the day reflects the turmoil
of the times just as it did a century ago, during the only
other period of history that might rival our late 20th century achievements in scientific discovery — the late 19th
century, easily identified as the Industrial Revolution.
Ironically, that period was also the dawn of a new century. The emergence of Darwin's theory of evolution in
1859 marked a major change in scientific thought. Pasteur followed, developing germ theory and pasteurization. Then came Mendel's laws of inheritance, Mende-
leyve's Table of Elements. Then, in 1900, Freud
published his work, The Interpretation of Dreams, introducing the whole world to the field of psychology, thereby changing the way we viewed ourselves. The microphone, color photography and electric lamps were
invented. The world became a smaller place due to the
telephone and transAtlantic cable.
One hundred years later, as we look at the turn of the
20th century, a new cycle of discovery is evident, beginning with development of the microchip in 1959. The
laser was invented. We sent the first human to space and
landed on the moon. Organs were transplanted to save
lives, while researchers created babies in test tubes and
cloned sheep. And the writers continued to write about it,
as they have since the beginning.
One of literature's earliest expressions of humanity's
enlightenment of knowledge and scientific discovery is
the Greek myth of Prometheus. Against Zeus' will,
Prometheus shared fire with the human race and taught
the arts and skills of civilization. This incident sets the
stage for the greatest allegory of literature: humankind's
continual struggle to control its own destiny.
Did Prometheus do humankind a favor? Along with
enlightenment and knowledge comes responsibility for
the ways in which knowledge is used. Another Greek:
myth serves as an object lesson in the use of knowledge.
Daedalus and Icarus, in their attempt to flee the Myce-
naean labyrinth, proved what happens when scientific
knowledge is taken past its intended purpose. Daedalus'
design and construction of wings molded with wax and
feathers was intended to fly him and his son away from
Mycenae. The story ended in tragedy, however, when
Icarus refused to heed his father's warning and soared
"like the gods" too close to the sun, plunging tragically to
his death in the sea.
The myth of Prometheus is continued in Mary
Shelley's gothic novel first published in 1818, aptly
entitled, Frankenstein or The Modern Prometheus.
Shelley incorporated her generation's heightened interest
in science into the story. In her age — as now — a
person's knowledge either promised great benefits to
humanity or threatened destruction. In its subtitle and
theme, Frankenstein raises questions about what
humankind will do with knowledge and what limits
should be placed on inquiry.
Shelley acknowledges that discussions of Darwin's
experiments provided inspiration for Frankenstein and
led to a dream: "My imagination, unbidden, possessed
and guided me.... I saw the hideous phantasm of a man
stretched out.... Frightful must it be, for supremely
frightful would be the effect of any human endeavour to
mock the stupendous mechanism of the Creator of the
world." Frankenstein, and later The Strange Case of Dr.
Jekyll and Mr. Hyde, also inspired by a dream and writ-
ten by Robert Louis Stevenson in 1886, foreshadowed
disturbing intellectual and social aspects of scientific
thinking. Darwinism and Freud's discoveries played a
role in Stevenson's creation of his Jekyll/Hyde character.
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22 / June 1998 Illinois Issues
Jane Silver, director of public policy
for the American Foundation for
AIDS Research, says Istook's
approach only fuels the "disease wars,"
pitting one group against another.
"The political debate is counterintuitive. It is not the way we do things in
public health," she says. "The comparisons of mortality are simplistic. It is
not sufficient to determine funding
priorities. Advances in AIDS will help
people with cancer. Advances in cardiology will help people with AIDS."
Maybe so, but Istook contends that
Congress, which is entrusted with
spending taxpayers' dollars, should
have its say-so on NIH priorities, just
as it does on what the Pentagon and
Environmental Protection Agency do
with public money.
Willie Sutton used to rob banks,
he once said, "because that's where the
money is." Like bank robbers,
researchers tend to follow the dollars.
Hence, funding decisions made by
Congress and NIH and influenced by
disease lobbyists have an insidious
effect, causing researchers to migrate
into new areas and abandon others.
Michael Langan, who represents the
orphan diseases, says, "When the congressional appropriations committees
earmark certain funds specifically for
one disease, whether it be AIDS or
cancer or diabetes or Parkinson's disease or Alzheimer's disease, one of the
negative effects is that the human
resources — the researchers, the PhDs
Stevenson's concept of the "evil
lurking within us all" brought
ideas of Freudian psychology
into the popular culture.
Science was the dominant
theme for Jules Verne, another
prolific writer of the late 19th
century. The author of A Journey to the Center of the Earth,
20,000 Leagues Under the Sea,
Around the World in 80 Days,
and From the Earth to the Moon
was influenced by the beliefs of
the day. The original source for
A Journey to the Center of the
Earth was no doubt the "hollow
Earth" theories that circulated
in the author's native France, as
well as growing public interest
in the sciences of geology and
paleontology. From the Earth to
the Moon was the first depiction of a scientifically plausible
manned moon voyage in Western literature. Many of Verne's
predictions proved true during
the Apollo flight program more
than 100 years later. Verne's
later work focused on his three
passionate beliefs that science
in the hands of evil people
becomes evil; that the raw
power of technology breeds
moral corruption; and that only
the wrath of God can limit such
excesses.
While Verne's works are
sometimes dismissed as science |
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Illinois Issues June 1998 / 23
and MDs — go where they perceive
the money to be." He says many
researchers have told him they have
given up studying rare diseases
because they don't expect money to be
available.
On the other hand, prostate cancer is
a disease much on the minds of many
in Congress, who have seen colleagues
and peers stricken, among them
former Senate Majority Leader Bob
Dole and Sen. Chuck Grassley, an
Iowa Republican who chairs the
Senate Special Committee on Aging.
With prodding by advocates, funding
for research into prostate cancer,
which kills nearly 40,000 older men a
year, has increased.
Dr. Gerald Chodak, a prostate
cancer researcher at the University of
Chicago and director of the
Prostate/Urology Center at Chicago's
Weiss Memorial Hospital, says
researchers are starting to follow the
money. "With a new influx in prostate
cancer money, a lot of basic
researchers are going to shift their
interest and apply for prostate cancer
grants, even though their interest was
in some other area, because the money
is there," he says. As research dollars
ebb and flow, colon cancer's loss may
be prostate cancer's gain.
AIDS advocates pioneered
a louder, and more effective,
approach to getting research
dollars. Their success
changed the political
landscape and heightened a
new problem for lobbyists:
the disease wars.
The same phenomenon occurred as
funds became available for AIDS,
drawing people from cancer research
and other areas. Before shifting their
focus to AIDS, many researchers, the
NIH's Varmus among them, had been
working on scientifically intriguing
diseases, though ones with little apparent bearing on humans, such as feline
leukemia virus or chicken sarcoma.
AIDS gave new relevance and urgency
to their work and also provided a huge
pot of funds. Varmus says, "When the
case is made clearly for the importance
of this new initiative, people will move
to it."
Oncologist Richard Schilsky, director of the University of Chicago
Cancer Research Center, says, "There
is some truth to the notion that people
change the direction of their research
based on funding opportunities."
He says most NIH research is initiated by researchers who compete for
funding in the general research project
grant pool. NIH, prodded to some
degree by patient advocates and
fantasy, H.G.Wells' science fiction was heralded as showing more preoccupation with social as well as scientific
progress. His first, The Time Machine, written in 1895,
was a social allegory set in the year 802701, describing a
society divided into two classes, the subterranean workers, called Morlocks, and the decadent Eloi. This was
followed by The Island of Dr. Moreau, The Invisible Man,
The War of the Worlds, When the Sleeper Wakes, The :
First Men in the Moon and Men Like Gods, written in
1923.
In varying degrees these novels combine political
satire, warnings about the dangerous new powers of
science and a desire to foresee a possible future. Bridging
the turn of the century, H.G. Wells, who died in 1946,
lived to see the birth of the atomic age. He passed the
baton to a new age of writers that would reflect the
double-edged sword of scientific advancement in their
writings.
Aldous Huxley published Brave New World in 1932
and told of a future world in which technology and
mind-controlling drugs removed the imperfections that
make humans act like humans instead of computers. Just
as Jules Verne foretold space travel, Huxley predicted
genetic engineering, virtual reality and psychiatric drugs.
In the foreword of the 1946 second printing of Brave
New World, Huxley stated that "the theme of Brave New
World is not the advancement of science as such; it is the
advancement of science as it affects human individuals."
Says Huxley, "The really revolutionary revolution is to be
achieved, not in the external world, but in the souls and
flesh of human beings." And of course that is where
literary expression is born, out of the souls and current
concerns of human beings.
Interest in the escalation of nuclear energy use and
advancements in genetic engineering continued through
the first half of the century and continued to be
expressed in popular fiction by such writers as Kurt
Vonnegut Jr. Some critics view Vonnegut as the first
major writer since Aldous Huxley to bridge the gulf
between science fiction and traditional fiction. Written in
1963, Cat's Cradle begins with "Call me Jonah," immediately conjuring up an image of the biblical Jonah and the
whale. In Vonnegut's tale, the whale represents technology and science swallowing everything.
Fear of nuclear destruction was, and still is to a lesser,
degree, a prevalent concern of the late 20th century.
Pierre Boulle's Monkey Planet was adapted into the popular Planet of the Apes movie by Rod Serling of Twilight
Zone fame. The novel and movie are significantly
different. However, who can forget the anguish when
astronaut Capt. George Taylor, played by Charlton
Heston, discovers that the planet overtaken by apes is
actually Earth following a nuclear war?
When Dr. Christiaan Barnard performed the first heart
transplant in South Africa in 1967, popular fiction took
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24 / June 1998 Illinois Issues
Congress, can sway the direction of
research by requesting proposals in
targeted areas. Merenstein of
Research!America worries that this
shifting of priorities as political winds
blow in new directions results in lost
opportunities. "Seasoned researchers
might not get their grant renewed and
young investigators might not get the
break they need to get started. Ultimately every disease loses out, especially since research in one area may
lead to breakthroughs in others,"
Which raises some provocative
questions of ethics. If the tail wags the
dog — if politics rather than science or
public health is what drives research
funding, if researchers behave like
bank robbers to chase down the money
— is that ethical?
"Sort of," answers Arthur Caplan,
head of the Center for Bioethics at the
University of Pennsylvania. "This
country has always chosen to allocate
research money by a political process
in which those who yell loudest get
funding. This process leaves some diseases and groups underserved and others overserved, but it is the choice of
the people to do it this way, and in that
sense it represents a moral choice
about how to allocate limited
resources." |
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Caplan finds the matter of
researchers being swept along in the
wake of changing funding priorities
"problematic." First, he says, "they
may follow money even though it is
leading to research that is not in the
public interest. Studying five more versions of antidepressants may be lucrative but add nothing to the overall ability to treat depression than is already
there. Also, if they follow the money to
make money, they may do much more
applied work than basic work, and it is
the basic work that ultimately fuels
breakthroughs. Finally, it is a problem
when money makes researchers cut
corners and distort their findings or
hype them."
"Do researchers have to eat? Yes,"
says George Annas, chair of the
Health Law Department at Boston
University School of Public Health.
"Are monetary opportunities the same
as an equitable research agenda or one
based on social justice? No."
Thomas Murray, director of the
Center for Biomedical Ethics at Case
the cue and writers turned their attention to black
marketing of transplant organs, the actual moment when
death occurs and other fears concerning the new
transplant field.
Popular writer Robin Cook, a physician, capitalized
on the new ideas emerging from scientific research and
articulated the general population's fears. His novel
Coma, written in 1977, follows protagonist Susan
Wheeler, an intern, as she uncovers mysterious deaths at
a hospital leading to discovery of a black market in
transplant organs. Another Cook novel. Brain, tackles
the controversy concerning the moment when death actually occurs. This time the hero is a neurologist who
discovers abnormalities in the brain scans of several
young women who mysteriously disappear. The evidence
eventually points to medical researchers run amok.
Cook knows when he has a good thing going. His third
one-word titled book, Fever, follows the formula. A medical researcher is forced to work on a questionable cancer
drug, his young daughter is dying of the disease, the factory upstream from his house is dumping benzene into a
nearby river, and he is fighting to complete his own cancer research in time to save his child. Talk about tapping
into public paranoia!
Michael Crichton also taps the public's interest in
scientific and technological research. As one critic put it,
Crichton's novels are "both a backward look to the 19th
century realistic novel (written to transmit social and
industrial information) and a projection into the future
when the novel will organize and synthesize the findings
of technology and science." In 1969, The Andromeda
Strain focused on the scientific, social and political issues
created by our constantly expanding technology.
Technological innovations are introduced at such a
dizzying pace that the average person is incapable of
understanding them. There the dilemma arises. The
responsible use of technology lies in the hands of a
relatively small group of people, and even these specialists are capable of oversights, miscalculations and poor
judgment, partly due to their own technological tunnel
vision. This theme is carried through in other popular
Crichton novels, including Jurassic Park and The Lost
World, concerned with genetic engineering; and Congo, a
safari to the rain forests in search of diamonds that could
possibly revolutionize computer technology.
Literature reflects the human condition. It is the mirror
in which we can judge humankind, with all its beauty and
imperfections. Literature allows us to explore the
unknowns of science and technology vicariously through
fictional characters who provide us with vignettes that
explore the "What ifs?" and the "What's it all abouts?"
either allaying our fears, or compounding them. As
science and technology continue to affect our daily lives
creating curiosity and controversy, the wordsmiths will
write about it.
Linda Classen Anderson
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Illinois Issues June 1998 / 25
If politics rather than
science or public health
is what drives research
funding, if researchers
behave like bank robbers
to chase down the
money — is that ethical?
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Western Reserve University School of
Medicine, sees the ethical issues as a
balance between power politics and
public accountability. "There's bad
politics and there's necessary political
accountability. Bad politics are when
some powerful person or institution
forces their priorities on the nation.
When, for example, a professional
organization tries to cut off funding
for a federal agency because they don't
like the results of the research sponsored by the agency. Or when right-to-
life groups stymie research on the
causes and treatment of infertility. Or,
maybe, when one member of Congress
forces his or her priorities on NIH —
not because they reflect the outcome
of open national debate, but because
that individual favors that particular
hobby horse.
"On the other hand," Murray, a
member of the National Bioethics
Advisory Commission, says, "science
funding by the public must be held
accountable to that public, through its
elected representatives. It seems to me
quite reasonable to have Congress and
the president indicate how much money should go towards, for example,
health-related research, how much to
basic research in physics, and so on.
How else are we to make such basic
decisions in science policy? Within
those basic priorities, however, just
which proposals get funded ought to
be principally determined by their
quality. And those judgments of
quality must be made by scientists."
Depending on politics to make
choices about scientific endeavors,
Caplan says, ultimately comes down
to a "question of what is fair. Fairness
demands that the process be open and
accountable, which it isn't when key
funding choices are made behind
closed doors or in back rooms. Fairness is a problem when some groups
know how to game the system — the
AIDS community, breast cancer,
diabetes — when others do not or
cannot due to the stigma of their
diseases — mental illness, domestic
violence, sexual abuse.
"It is not the system I would use,"
Caplan says. "I would try to pour more
money into those areas where cures
look imminent and where persons are
the worst off."
Annas finds the intersection of
politics and science a precarious one.
"Politics is about influence and how
you can get more of it than your 'competitors' or other 'special interest
groups'; when people with diseases are
seen as 'special interest groups' and try
to compare their suffering with that of
people with other diseases, we all lose
since emotion and raw political power
replace any reasonable discourse on
things like cost-benefit analysis, or
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26 / June 1998 Illinois Issues
even cost-effectiveness analysis in
public policy formation."
And where does ethics fit into the
equation?
"It doesn't," says Annas.
"Congress simply takes the path
of least resistance and political
expediency."
Which brings us full circle.
Even with increased dollars, the
politics of research funding are not
likely to change dramatically because
politics and clout are what Congress
knows best, and funding for medical
research is part of that process.
"The lawmaking process is not
necessarily logical," says former Sen.
Simon, a lifelong politician who is
involved with Research!America's
efforts to increase research funding.
"There is no consistency. Don't look
for it now, or 10 years from now, or
20 years from now."
Or ever.
Howard Wolinsky is a reporter for the
Chicago Sun-Times, where he covers
technology. He was the newspaper's
medical writer for 14 years. He also was a
journalist-in-residence studying medical
ethics and politics at the University of
Michigan under a grant from the National
Endowment for the Humanities. He is
the co-author, with Tom Brune, of The
Serpent on the Staff: The Unhealthy
Politics of the American Medical
Association, published in 1994.
Q&A Question & Answer
Harold Varmus
He is described by colleagues as being
a "scientist's scientist."
Dr. Harold Varmus is a member of the
Institute of Medicine and the National
Academy of Sciences. Before becoming
director of the National Institutes of
Health, the country's premier center for
medical research, in 1993, he made a
major mark as a researcher. Immediately
before moving to the NIH, he was a professor of microbiology, immunology, biochemistry and biophysics. For more than
20 years, he was the American Cancer
Society Professor of Molecular Virology
at the University of California, San
Francisco, where lie studied retroviruses,
which cause HIV, and the genetic basis
of cancer.
In 1989, Varmus and his UCSF
colleague Dr. J. Michael Bishop shared
the Nobel Prize in Physiology or Medicine for demonstrating that cancer genes
can arise from normal cellular genes.
The following is an edited interview
conducted by Howard Wolinsky.
Q. How do politics affect decision-making at the National Institutes of Health?
Obviously, we're a public institution
and we get our money from the Congress
and the taxpayers, so we listen to what
people have to say. Obviously, we also
follow the law. Because we're a government agency within the Administration,
we follow directives from on high. We are
subject to a variety of kinds of influences
from the indirect to the direct.
What about the report from Congressman John Porter's Subcommittee
on Appropriations that contains many
recommendations to NIH on research?
Most of the language in the report is
not quantitative. They will ask that we
"pay special attention to" and we sometimes have to write a report. We like to
think that we pay careful attention to
every disease we're responsible for. When
we're asked to write a report, obviously
extra attention is spent on summarizing
what's going on. It's hard to measure
whether anything extra actually happens.
Every institute has a careful review
process at least annually, if not more
often, to look at the extent of the portfolio and to determine whether or not there
are scientific opportunities and public-
health needs that are not being met.
Those are the two major guideposts to
how we spend our money.
Q. Congressman Porter says he opposes
earmarking" and does everything he can
to prevent it.
Let me point out something. We have
categorical institutes. At some point, the
committee does vote to give a certain
amount of money to certain institutes.
Mr. Porter has listened very carefully to
what we and I say ought to be the distribution, and 1 very much appreciate that.
But ultimately, the committee does take
responsibility for saying a certain number
of dollars goes to the Heart, Lung and
Blood Institute, a certain amount to the
Cancer Institute, a certain amount to
the Nursing Institute. I wouldn't call that
earmarking.
Earmarking is a bad term, in a sense,
because it covers a wide range of actions.
At the worst, earmarking is writing into
your bill that the NIH shall spend $3.5
million to fund a study of some disease at
a certain institution.
Q. Has that happened?
I don't think I've seen that since I've
been here. But that's the worst. The next
level down is that NIH shall spend up to
a certain amount of money on a certain
disease without naming the institution
and without saying how many grants. But
that's not so different from saying that
NIH shall spend $2.5 billion on cancer
research. We do that. That's in our bill.
Q. On the NIH side, as opposed to
Congress, do advocates do much lobbying?
Tremendous.
Q. What impact do they have on your
decision-making?
The best influence comes about when
the advocacy groups, as they frequently
do, become really educated about the
disease and the science being done on it.
The AIDS activists have really been
brilliant in this regard, participating very
actively in our decision-making, providing really useful advice. The other thing
that I think is very useful is when the
prodding is not simply about dollars. It
is very simple for an activist group to say
my goal is to double the amount of
money being spent on disease X. In
my mind, that isn't the objective. The
objective is do better science, to put
better minds to work. People have the
idea there are scientific results out there
to be purchased, that if you simply put
more money into a problem that a problem will get solved. It just isn't that way.
The answers are not sitting on shelves
in some science store.
Illinois Issues June 1998 / 27
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