PRESIDENT CLINTON ANNOUNCES THE COMPLETION OF THE FIRST SURVEY OF THE ENTIRE HUMAN GENOME Hails Public and Private Efforts Leading to This Historic Achievement

THE WHITE HOUSE

Office of the Press Secretary

___________________________________________________________________________
For Immediate Release June 25, 2000




PRESIDENT CLINTON ANNOUNCES THE COMPLETION OF THE FIRST
SURVEY OF THE ENTIRE HUMAN GENOME
Hails Public and Private Efforts Leading to This Historic Achievement
June 26, 2000


Today, at a historic White House event with British Prime Minister Tony
Blair, President Clinton announced that the international Human Genome
Project and Celera Genomics Corporation have both completed an initial
sequencing of the human genome -- the genetic blueprint for human beings.
He congratulated the scientists working in both the public and private
sectors on this landmark achievement, which promises to lead to a new era
of molecular medicine, an era that will bring new ways to prevent,
diagnose, treat and cure disease. The President pledged to continue and
accelerate the United States' commitment to helping translate this
blueprint into novel healthcare strategies and therapies. He will
underscore that this genetic information must never be used to stigmatize
or discriminate against any individual or group. Our scientific advances
must always incorporate our most cherished values, and the privacy of this
new information must be protected.



DECODING THE HUMAN GENOME WILL LEAD TO NEW WAYS TO PREVENT, DIAGNOSE,
TREAT, AND CURE DISEASE. Alterations in our genes are responsible for an
estimated 5000 clearly hereditary diseases, such as Huntington's disease,
cystic fibrosis, and sickle cell anemia, and influence the development of
thousands of other diseases. Before the advent of the Human Genome
Project, a joint project of HHS, DOE, and international partners in the
United Kingdom, France, Germany, Japan, China, connecting a gene with a
disease was a slow, arduous, painstaking, and frequently imprecise process.
Today, genes are discovered and described within days. For example, in
1989, scientists found the gene for cystic fibrosis after a 9-year search;
eight years later, largely because of the coordinated efforts of the Human
Genome Project, a gene for Parkinson's disease was mapped in only 9 days.
Now, scientists will be able to use the working draft of the human genome

to:

• Alert patients that they are at risk for certain diseases. Once
  

scientists discover which DNA sequence changes in a gene can cause disease,
healthy people can be tested to see whether they risk developing conditions

such as diabetes or prostate cancer later in life. In many cases, this
advance warning can be a cue to start a vigilant screening program, to take
preventive medicines, or to make diet or lifestyle changes that may prevent
the disease.

• Reliably predict the course of disease. Diagnosing ailments more
  

precisely will lead to more reliable predictions about the course of a
disease. For example, a genetic fingerprint will allow doctors treating
prostate cancer to predict how aggressive a tumor will be. New genetic
information will help patients and doctors weigh the risks and benefits of
different treatments.

• Precisely diagnose disease and ensure the most effective treatment is
  

used. Genetic analysis allows us to classify diseases, such as colon
cancer and skin cancer, into more defined categories. These improved
classifications will eventually allow scientists to tailor drugs for
patients whose individual response can be predicted by genetic
fingerprinting. For example, cancer patients facing chemotherapy could
receive a genetic fingerprint of their tumor that would predict which
chemotherapy choices are most likely to be effective, leading to fewer side
effects from the treatment and improved prognoses.

• Developing new treatments at the molecular level. Drug design guided by
  

an understanding of how genes work and knowledge of exactly what happens at
the molecular level to cause disease, will lead to more effective
therapies. In many cases, rather than trying to replace a gene, it may be
more effective and simpler to replace a defective gene's protein product.
Alternatively, it may be possible to administer a small molecule that would
interact with the protein to change its behavior. This is the strategy
behind a drug in development for chronic myelogenous leukemia, which
targets the genetic flaw causing the disease. It attaches to the abnormal
protein caused by the genetic flaw and blocks its activity. In preliminary
tests, blood counts returned to normal in all patients treated with the
drug.



TODAY'S ANNOUNCEMENT REPRESENTS THE STARTING POINT FOR A NEW ERA OF GENETIC
MEDICINE. The sequence represents only the first step in the full decoding
of the genome, because most of the individual genes and their specific
functions must still be deciphered and understood. This research has
begun, and already, tens of thousands of genes have been identified,
including some related to deafness, kidney disease, breast cancer,
hereditary skeletal disorders, hemorrhagic stroke and diabetes, thus
advancing the work of researchers worldwide at a rate that would have
impossible without these data. The Human Genome Project, which completed
its version of the working draft two years ahead of schedule and under
budget, will continue its longstanding practice of making all of its
sequencing data available to public and privately funded researchers
worldwide at no cost. Celera Genomics, which makes its sequencing data
available by subscription, will also make its version of the consensus
human genome sequence available to non-subscribers upon publication.



PRESIDENT CLINTON PLEDGES STRONG SUPPORT FOR GENETIC RESEARCH BY BOTH THE
PUBLIC AND PRIVATE SECTORS. President Clinton reiterated the commitment of
the United States to robust Federal support for basic scientific research
facilitating medical application of the science. President Clinton also
stated his support for a strong structure to review the medical, ethical
and other issues presented by the expected new power of genetic medicine,
building on the multi-million dollar investment the Human Genome Project
already makes in research on the social, ethical and legal implications of
this work. He recognized that research and development by biotechnology
companies will be key to the translation of human genome sequence data into
useful, new healthcare products and pledged to strengthen a business
environment that will spur research and development in this vital sector.
The President also reaffirmed his support for patenting genetic discoveries
that have substantial and credible uses. By protecting and rewarding
investment in research, consistent with current law, this policy of
intellectual property protection will promote rapid conversion of basic
knowledge into useful applications, while at the same time allowing a
maximum free flow of basic scientific information.


TODAY'S ANNOUNCEMENT BUILDS ON THE CLINTON-GORE ADMINISTRATION'S STRONG
COMMITMENT TO PROTECTING PRIVATE GENETIC INFORMATION. Since 1997, the

President and Vice President have called for legislation that will
guarantee that Americans who are self-employed or otherwise buy health
insurance themselves will not lose or be denied that health insurance
because of their genetic makeup. Last winter, President Clinton signed an
executive order that prohibits every civilian Federal Department and agency
from using genetic information in any hiring or promotion action. This
historic action prevented critical information from genetic tests used to
help predict, prevent, and treat diseases, from being used against Federal
employees. In addition, President Clinton has endorsed the Genetic
Nondiscrimination in Health Insurance and Employment Act of 1999,
introduced by Senator Daschle and Congresswoman Slaughter, that will extend
these employment protections to the private sector and finish the job of
helping to extend protections to individuals purchasing health insurance,
begun with the Health Insurance Portability and Accountability Act.

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