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REMARKS BY: DONNA E. SHALALA, SECRETARY OF HEALTH AND HUMAN SERVICES PLACE: The National Association of Science Writers Annual Meeting, Baltimore, Maryland DATE: February 9, 1996
Through words and pictures, you make the complex world understandable -- ensuring that good health knowledge translates into good health outcomes for all our citizens.
You open the doors to both information and imagination -- helping people understand why science is everybody's turf.
And, even more than Steven Spielberg, you are the creators of "Dream-Works" -- nourishing the love and fascination that people of all ages -- especially children -- have for science.
And that's never been more important than right now.
Because, right now, our country is not as scientifically literate as it needs to be. In a time when surveys show that too many college graduates don't know that the earth revolves around the sun, and almost as many aren't sure whether people or dinosaurs arrived here first -- we have our work cut out for us.
This doesn't mean that our citizens don't care about the promise of science, or the accomplishments of science -- they do. From the inner workings of DNA to what lies at the outer edge of the universe, the public imagination hungers for discovery, exploration and knowledge about who we are.
Last Sunday, there were three books on The New York Times non-fiction bestseller's list that -- in one way or another -- try to explain the physical world.
One was Dava Sobel's Longitude, the story of John Harrison and how he revolutionized navigation through the invention of the chronometer. This book, like The Double Helix, is an inspiring story that appeals to people's hopes and their faith that knowledge can pave the road to a better life.
But there is also a tradition of science writing that mirrors the public's worst fears about science. I'm talking about a genre that includes Brave New World, Jurassic Park, and Thomas Pynchon's V.
Pervading all of these books is a deep fear that science will become disconnected from the moral order; that technology will isolate us from each other; and that science will continue to ask "can we do this?" without ever asking "should we do this?"
As a country, we must take these fears very seriously.
Because, it is not enough for us to rack up one scientific victory after another. Science and technology must not get ahead of our values and ethics -- or public support for science will erode and our engine of progress could become an Orwellian nightmare.
Together, we must show people not just the moment of discovery, but the meaning of discovery -- not just the extraordinary achievements of science, but the mistakes that are sometimes made. And, through it all, we must make it clear that if scientific breakthroughs have a big price tag, they have an even bigger pay off.
Just look around this Baltimore community: Home of the Space Telescope Institute, two of our country's best teaching hospitals, the Columbus Center for marine biotechnology, and the new Institute of Human Virology.
These jewels of science didn't just appear overnight. They grew out of a commitment -- a historic commitment, an American commitment -- to science.
Fifty-five years ago, when President Roosevelt dedicated the NIH campus, he summed up our national commitment to biomedical research this way: "I dedicate it to the underlying philosophy of public health. To the conservation of life. To the wise use of vital resources of the nation. I voice for America and for the stricken world our hopes, our prayers, our faith in the power of
...humanity."
Since World War II, our historic commitment to biomedical research has spawned a steady march of progress -- from the mapping of the Human Genome to the creation of new drugs targeted to specific diseases.
And, since World War II, through years of Republican and Democratic leadership, that hope -- that vision -- that bipartisan commitment to science -- has not wavered. And, it must not waver today.
Because, like war and peace, revolutions in science have defined the ages, transformed our lives, and altered the very course of global history. And, like war and peace, investments in science guarantee our national security -- and must remain a national priority.
That's why at our department we've recruited some of our country's most brilliant scientific minds -- from Phil Lee to Harold Varmus; from David Satcher to Bill Paul; and from Rick Klausner to Francis Collins.
That's why the President created the National Science and Technology Council to give us an integrated research and development budget.
That's why under the remarkable leadership of David Kessler, we've slashed drug approval times 50% since 1987, and approved the first protease inhibitor, Saquinavir, in less than 100 days.
That's why we've supported the new science education standards from day one -- so that every American is introduced to science from the time they start crawling.
I am proud to serve with a President who understands that investments in research are the engines of long term economic progress. And, that's why, in a time of zero growth across government, our Administration has fought -- and will continue to fight -- for steady increases in research.
In just three years, these efforts have paid off -- time and time again.
They've helped lead to the discovery of three genes linked to hereditary breast cancer. To the first drug treatment for severe sickle cell anemia. To the first treatment for the most common form of stroke. And, to five new licensed anti-viral drugs for people living with HIV/AIDS, and two very promising protease inhibitors waiting in the wings.
We must continue down this path -- doing everything in our power to support innovative AIDS research and speed the approval of new drugs.
Make no mistake about it: The President and I are absolutely committed to maintaining a strong Office of AIDS Research -- with its budget authority kept completely intact. And, we are committed to finding new ways to energize and enhance our science agenda.
And, that's why I am very pleased to announce the release of new recommendations that provide a roadmap to bring our Clinical Center at NIH into the 21st century.
Let me take just a few moments to trace the steps that we took to get here today.
As part of Vice President Gore's Reinventing Government initiative, the Clinical Center was designated as an organization to be thoroughly reviewed -- and, if appropriate -- reengineered.
And, we took that challenge to heart.
Under the leadership of Dr. Helen Smits, our Deputy Administrator of the Health Care Financing Administration, we conducted a top-to-bottom review that asked some tough questions about the way we do business now -- and the way we must do business in the future.
But, let me be clear: These questions weren't answered by a group of Washington officials sitting around a closed room. We traveled around the entire country -- gathering advice and insights from experts in the private and public sectors.
And, their collective wisdom is reflected in these recommendations: recommendations that will help us strike the right balance between cost and quality; recommendations that fundamentally alter the way the Center is governed, funded, and managed; and recommendations that create a blueprint for the future of clinical research not only at NIH -- but throughout America.
First and foremost, the report recommends that we create a new Board of Governors to oversee the Clinical Center -- the majority of whom should be from outside the government.
Their charge? Annual budgeting. Oversight of operations. And strategic, longterm planning based on clear and obtainable objectives.
The Board will be nothing short of world class: the most experienced leaders committed to the highest quality science.
Next, for research to really thrive, the Clinical Center should have a stable, clearly defined, budget of its own. But, secure funding is not enough.
To give the American people the very best science for their money, the Clinical Center must have the independence and the flexibility to get the job done.
That means giving the Center the ability to tap into new sources of revenue. And, it means designating the Center a "Reinvention Laboratory" -- so that it's governed with less regulation, less cumbersome personnel and procurement practices and more autonomy.
But, just as we're not able to fly into the future riding in a horse and buggy, we certainly can't expect a hospital built in 1950s to transport us into the next century. That's why the report recommends that we actively seek funding for a new, state-of-the-art clinical research center facility.
We need a center that's more efficient to run, more affordable to maintain, and more flexible to staff.
We have no absolutely no idea whether our next great challenge will be the transplanting of genes or the battle against a deadly new infectious disease. The point is, as science and technology continue to rapidly change, we need a center that can quickly adapt to today's realities and tomorrow's challenges.
And, during this time of budgetary uncertainty, the reason we were able to even think about building for the future is that we had developed a plan -- a thoughtful, strategic plan -- to ensure that this country's best research institution improves its efficiency, without sacrificing its effectiveness.
But, that longterm plan must extend well beyond the Clinical Center and well beyond the NIH.
If we are to ensure that America continues to lead the world in research into the next century -- and beyond, I believe that there are five challenges that we must meet -- together.
FIRST, LET'S ENSURE THAT OUR BIOETHICS ARE AS SOPHISTICATED AS OUR SCIENCE.
The Human Genome project is our 20th and 21st century equivalent of the Age of Exploration. We are mapping the human body just as 15th and 16th century explorers mapped the world. The question is, where will that map lead us?
The Human Genome is the Roseta Stone of who we are. When we unlock its mysteries we will have the ability to conquer some of humanity's most dreaded enemies and empower people to make informed decisions about their health.
But, for every great scientific breakthrough -- whether in genetics or in medicine, difficult ethical questions will emerge -- and those questions must be addressed carefully and immediately.
Because we must not create a world where our genetic map is used to deny us jobs or health insurance.
We must not create a world where the worthy goal of science eclipses our fundamental sense of humanity, fairness and values.
And, we must not create a world where discoveries of the future widen the chasm between the haves and the have nots -- and send us backwards.
SECOND, LET'S ENSURE THAT THE CULTURE OF RESEARCH NOT ONLY SURVIVES -- BUT THRIVES.
We know that research cannot survive with the uncertainty of seven year budgets. To create real security for research itself, as well as our scientists and their students, we must find new ways -- more stable ways -- of financing research in the future.
Because it is only with real security, that we can nourish the seeds of research. And, it is only with real security that we can create an atmosphere in which young investigators are pulled into science, inspired to stay there, and ultimately train the next generation of scientists.
We have built a magnificent scientific infrastructure -- but it is extremely fragile. Like many of our cherished treasures, it is hard to build and easy to tear down.
One caution: as we search for financial stability and security, we must ensure that we make every dollar count. That's why at NIH, we're conducting top down reviews of our intramural research -- so that we can spend our money wisely and effectively. That's why we're fine tuning the peer-review system to ensure that it continues to serve us well in funding the best science around.
And that's why we must focus on prevention. Fifty percent of all deaths have their roots in personal behavior. We must invest in all the science that holds the potential to prevent disease and help Americans live healthier lives -- from environmental research, to occupational research to behavioral research.
THIRD, WE MUST LOOK BEYOND THE BOTTOM LINE OF PROFITS -- TO THE BOTTOM LINE OF PROGRESS.
I don't have to tell any of you about the impact that cost-cutting is having on some of our most fundamental missions and most cherished institutions. It is not easy or inexpensive to run an Academic Health Center. I know, I ran one.
But, our Academic Health Centers are the envy of the world. They are the places where we unlock our greatest scientific mysteries. They are the places where we educate and train the next generation of scientists. And, they are often the places where we care for our neediest citizens. Their mandate is unique -- and their goals will not simply survive in the marketplace.
As a country, we must address the complex -- and potentially devastating -- pressures squeezing Academic Health Centers today. At our department, we are forming a working group -- led by Phil Lee -- to do just that.
We want to reach out to leaders of Academic Health Centers and help find innovative ways to safeguard the irreplaceable -- the absolutely irreplaceable -- contributions that these great institutions make.
At the same time, we must ensure that we do not punish progress. It is time to tackle the perverse economic incentives that discourage experimental studies and other attempts to push the frontiers of knowledge. And, it is time to protect and strengthen the treasure of clinical research.
That's why Harold Varmus has convened a panel to put a magnifying glass up to patient-oriented research. Under the leadership of Dr. David Nathan, a group of experts will ask some fundamental questions about how we can protect the critical role -- the "translational role" -- of clinical research.
We need to know how we can reinforce the link between the laboratory of basic science and the living rooms of our citizens -- and how we can ensure that the best science in the world ultimately pays off for all Americans.
And, that brings me to my fourth challenge.
FOURTH, WE NEED TO TAKE THE LONG VIEW OF BASIC SCIENCE.
The promise of gene therapy -- while awe inspiring -- is still miles from being realized. That's the tough wake-up call we received in December from a panel of experts. And from it we were reminded of some important lessons.
We were reminded that we must invest more in the foundation of our scientific universe -- in the incremental gifts of basic science that help us unleash blockbuster discoveries over time.
We were reminded of the importance of honesty and self criticism -- the importance of being willing to change directions -- even in mid-sentence -- if it will help us reach our common goals.
And, we were reminded that we must do a better job of educating the public about what's really possible right now -- and what's not -- which brings me to my fifth and final challenge:
FIFTH, EVERY CITIZEN MUST BE AN ACTIVE CONSTITUENT OF SCIENCE
Whenever science has leapfrogged over the general public's knowledge, we have catapulted into confusion, stagnation, and even darkness. Just ask Galileo.
To succeed in the 21st century, our obligation must go beyond answering our most perplexing scientific questions. We must hop onto the information superhighway and ensure that the critical information about science and health are only a keystroke away for our citizens.
And, most important, we must write the poetry of science in prose the American people understand.
We need a sophisticated electorate that has the context and intellectual discipline to absorb the great breakthroughs; an electorate that understands the historical, social, and economic urgency of investing in science; an electorate that cares deeply about science because they understand how it touches and benefits their lives; and, an electorate willing to nourish our investments -- in good times and in bad times.
And that -- above all else -- is the key to our collective future. So, before we leave here this morning, let us ask ourselves: When we are long gone, and the science journalists of tomorrow sit down to write about the triumphs and failures of today, what will they say about the pathways that we cleared and the footprints we left?
At a time of great revolutions in both biology and information, did we rise to the challenge?
Did we maintain our strong commitment -- our international commitment -- to basic science and clinical research?
Did we attract, train and sustain new generations of brilliant scientists -- women and men?
Did we educate the American people about the ethics and economics, risks and rewards that are inherent in modern science?
Did we give our citizens the tools they needed to make the right choices with the only lives they will ever have?
Did we embrace our common vision and move forward on our common ground?
Quite simply, did we do the right thing?
Because, just like the dying woman who plants a tree for her grandchildren to enjoy, every seed of science that we plant today, every inch of soil that we cultivate tomorrow, has the potential to open the doors and the enrich the lives of this generation -- and every generation to come.
Thank you.