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Human Genome Project Information


[Briefing Room header]


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


                    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.







RealVideo Listen to the Press Conference: Human Genome Project Completes Working Draft, June 2000

Clinton Presidential Materials Project of the National Archives and Records Administration

Announcement * Press briefing * remarks


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