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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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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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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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."

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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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?

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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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. 

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