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, in an 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 for 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 the effort necessary to translate the blueprint into novel healthcare
strategies and therapies. He will also underscore that while these
advances promise great benefits, 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, which is a joint project of the Department
of Health and Human Services, the Department of Energy, 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 and pharmaceutical 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
these vital sectors. 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.
Office of Science
and Technology Policy
1600 Pennsylvania Ave, N.W
Washington, DC 20502
202.395.7347
mailto:ostpinfo@ostp.eop.gov
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