THE WHITE HOUSE AT WORK
Monday, June 26, 2000
ANNOUNCING THE COMPLETION OF THE FIRST SURVEY OF THE ENTIRE HUMAN GENOME
June 26, 2000
"Today, we are learning the language in which God created life. With this profound new knowledge, humankind is on the verge of gaining immense, new power to heal."
President Bill Clinton
Monday, June 26, 2000
Today, at the White House, President Clinton, along with British Prime Minister Tony Blair, 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. The President congratulated the scientists working on this landmark achievement, which promises to bring new ways to prevent, diagnose, treat and cure disease. The President pledged to continue and accelerate the United States' participation in this historic effort, and underscored that genetic information must never be used to stigmatize or discriminate against any individual or group.
A REVOLUTION IN PREVENTING, DIAGNOSING, TREATING, AND CURING DISEASE. Genetics causes an estimated 5,000 hereditary diseases and influences the development of thousands of other diseases. Before the advent of the Human Genome Project - a joint effort of the Department of Health and Human Services, the Department of Energy, and partners in the U.K., France, Germany, Japan, and China - connecting a gene with a disease was a slow, arduous, and often imprecise process. Today, largely because of the efforts of the Human Genome Project, genes are discovered and described within days. Scientists will be able to use the working draft of the human genome to:
- Alert patients that they are at risk for certain diseases;
- Reliably predict the course of disease;
- Precisely diagnose disease and ensure that the most effective treatment is used; and
- Develop new, more effective treatments at the molecular level.
USHERING IN 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. 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 researchers worldwide at no cost. Celera Genomics, which makes its sequencing data available by subscription, has said that it will also make its version of the consensus human genome sequence available to non-subscribers upon publication.
PLEDGING STRONG SUPPORT FOR GENETIC RESEARCH. At today's announcement, President Clinton:
- Reiterated U.S.commitment to strong federal support for genetic research;
- Stated his support for a structure to consider the medical, ethical and legal issues created by this research;
- Recognized that research and development by biotechnology companies will be key to the translation of human genome sequence data into new health care products;
- Pledged to foster a business environment that will spur research and development in this vital sector; and
- Reaffirmed his support for patenting genetic discoveries that have substantial and credible uses.
BUILDING ON A STRONG COMMITMENT TO PROTECTING PRIVATE GENETIC INFORMATION. President Clinton and Vice President Gore have worked to ensure that scientific advances do not compromise patient privacy protections. President Clinton has:
- Signed an executive order that prohibits every civilian federal department and agency from using genetic information in any hiring or promotion action;
- Signed the Health Insurance Portability and Accountability Act, which prevents group health insurers from using genetic information to deny individuals health insurance benefits; and
- Endorsed the Genetic Nondiscrimination in Health Insurance & Employment Act of 1999, which ensures that genetic information will not be used to discriminate against Americans seeking employment, promotion, or health insurance.
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