●ロイター発、2000-02-08
Clinton Signing Order on Genetic Discrimination
WASHINGTON (Reuters) - President Clinton planned to sign an executive order
on Tuesday prohibiting the federal government from using genetic information
in any hiring or promotion decisions.
The move brings to the forefront a 21st century problem -- whether
employers should be allowed to use a person's genetic makeup in employment
decisions.
``This historic action will prevent the critical health information from
genetic tests used to help predict, prevent and treat diseases from being
used against them by their employer,'' the White House said.
Clinton was to sign the order at a midday event at the American Academy for
the Advancement of Science in Washington.
White House spokesman Joe Lockhart said the order looks down the road five
years when a person's genetic makeup may be more readily available.
Clinton, who often speaks of the potential benefits of the so-called Human
Genome Project, in which scientists are mapping every gene in the human
body, planned to endorse the Genetic Nondiscrimination in Health Insurance
and Employment Act of 1999.
It was introduced by Senate minority leader Tom Daschle, a South Dakota
Democrat, and New York Democratic Rep. Louise Slaughter in the House of
presentatives. The bill would extend genetic employment protections to the
private sector.
Clinton also planned to voice his concern about recent deaths as a result
of experimental gene therapy treatments.
A Senate subcommittee reviewing the government's overseeing of gene therapy
trials heard last week from Paul Gelsinger, of Tucson, Arizona, whose
18-year-old son Jesse died in September after University of Pennsylvania
researchers infused a gene-altered virus into his liver.
Clinton planned to ask Health and Human Services Secretary Donna Shalala to
instruct the Food and Drug Administration and the National Institutes of
Health to expedite their view of gene therapy guidelines and regulations.
"Later this year, researchers will complete the first draft of the
entire human genome, the very blueprint of life. It is important for
all our fellow Americans to recognize that federal tax dollars have
funded much of this research, and that this and other wise investments
in science are leading to a revolution in our ability to detect, treat,
and prevent disease."
President Clinton
January 27, 2000
"State of the Union"
At today’s Medals of Science and Technology awards ceremony, the
President will announce that he and Prime Minister Tony Blair have
agreed on a statement of principle to ensure that discoveries from
the human genome are used to advance human health. Their joint statement,
to be issued in the U.S. and U.K. today, applauds researchers who have
made their human genome sequence data freely available to the global
scientific community and calls upon others to follow their lead.
The statement also acknowledges the importance of intellectual property
protection as an incentive for the development of important, new
gene-based health care products.
ACCESS TO FUNDAMENTAL INFORMATION ABOUT THE HUMAN GENOME WILL IMPROVE HEALTH.
The United States and the United Kingdom are the leading partners in
Human Genome Project ? the international effort to map and sequence the
3 billion “letters” and to locate and identify the roughly 100,000
genes that make up the human genetic code.
This project will revolutionize the practice of medicine, providing
the means to custom tailor treatments to the needs of each patient,
and to prolong healthy life by predicting and preventing diseases.
Unencumbered access to the raw human sequence data will promote its
use by scientists all over the world in their efforts to understand
human biology and disease at the level of individual genes.
The single most important development in human biology in the short
term will be the completion of the sequencing of the human genome.
Government-funded research activities have made important contributions
to this result. The private sector has also made significant advances
in recent years.
The single biggest challenge to humankind will be to take this vast
storehouse of information and rapidly develop new products to diagnose
and treat human diseases. That process will require continued support
for government research. It will also require a suitable environment
for the private sector to develop new products, including appropriate
intellectual property protection.
The president’s budget calls for a $1 billion increase for biomedical
research at the National Institutes of Health (NIH), to nearly $18.8
billion. These funds will support merit-based, peer-reviewed research,
largely conducted by individual investigators. Biomedical research
continues to pave the way toward better diagnostics, treatments,
and cures. Recent breakthroughs have led to techniques that hold
promise for treating Parkinson’s disease, diabetes, heart disease,
and many other debilitating disorders. As new health risks arise,
prevention of disease also requires increased attention.
With the increase requested for FY 2001, NIH plans to focus on the
following four themes: exploiting the power of genomics, reinvigorating
clinical research, harnessing the expertise of allied scientific and
engineering disciplines that contribute to biomedical research, and
reducing disparities in health.
The increase will support research in areas such as diabetes, brain
disorders, cancer, genetic medicine, disease prevention strategies,
and development of an AIDS vaccine.
R&D Budget -- a Bold Course of Strategic Growth and Prosperity Through
Discovery. The President and the Vice President remain unwavering in
their support for science and technology as crucial investments in
our future. These investments enable our nation to compete aggressively
in the global marketplace, protect our environment and manage our
natural resources in a sustainable manner, safeguard our national
security from emerging threats, and spur the technological
innovation that has contributed so much to our economic prosperity
and quality of life.
The FY 2001 budget for R&D continues the important R&D trends
established by the President and Vice President:
This is the eighth consecutive year that the President and Vice
President have proposed increased investments in civilian
research and development. Civilian R&D is up 43% since they
have taken office.
It boosts funding for basic research by 7% ? a $1.3 billion
increase. Funding for basic research is up 52% since 1993.
R&D support to Universities increases 8% ? a $1.3 billion
increase. R&D support to Universities is up 53% since 1993.
Perhaps most important, this budget presents a balanced R&D
portfolio, which recognizes the interdependence among the
scientific disciplines. Gains in one field are often dependent
on advances in others.
HUMAN GENOME PROJECT FACT SHEET
March 14, 2000
Benefiting All Humanity. The Human Genome Project (HGP), an
international effort formally begun in October 1990, was planned
to last 15 years, but rapid technological advances have accelerated
the expected completion date by at least two years. The project’s
are to discover all of the approximate 100,000 human genes
(the human genome) and make them accessible for further biological
study and to determine the complete sequence of the 3 billion DNA
subunits (bases). As part of the HGP, parallel studies are being
carried out on selected model organisms such as the bacterium E.
coli to help develop the technology and interpret human gene function.
The HGP is also the first large scientific undertaking to address
the ethical, legal, and social issues that may arise from such a
project. The National Institutes of Health's National Human Genome
Research Institute (NHGRI) and the Department of Energy’s Human
Genome Program together make up the U.S. Human Genome Project,
the world's largest centrally coordinated biology research project
ever undertaken. The U.K.’s Wellcome Trust, a private philanthropy,
also contributes to the global initiative and supports one of the
five principal large-scale human genome sequencing centers.
Longer Lives and Better Health. The project will reap enormous
benefits for humankind, some that we can anticipate and others that
will surprise us. Biologists and researchers will have access to
detailed DNA information that is key to understanding the structure,
organization, and function of DNA in chromosomes. Genome maps of
other organisms will provide the basis for comparative studies that
are often critical to understanding more complex biological systems.
Information generated and technologies developed will revolutionize
future biological explorations. Technology and resources generated
by the Human Genome Project and other genomics research are already
having a major impact on research across the life sciences. For
example, the HGP has produced detailed maps that can be used to
help pinpoint genes associated with particular diseases, leading
to better treatment and prevention methods. A prime example is
that families at risk of hereditary colon cancer can now be screened
and lessen their chances of dying from this illness with surveillance
and dietary measures. The potential for commercial development of
genomics research also presents U.S. industry with a wealth of
opportunities, and sales of DNA-based products and technologies
in the biotechnology industry are projected to exceed $45 billion by 2009.
Strong Administration Support for Human Genome Research. During the
past eight years, President Clinton and Vice President Gore have
increased the funding for this ambitious project by 165%, providing
over $2.6 billion in federal funds to the HGP.
Clinton/Gore Administration
U.S. Human Genome Project Funding History
($$ in Millions)