The Honorable Neal Lane
Assistant to the President for Science and Technology
Director of the Office of Science and Technology Policy
Subcommittee on Energy and Environment
Committee on Science
United States House of Representatives
April 6, 2000
Mr. Chairman, members of the Subcommittee, thank you for the opportunity to appear before you to discuss the Human Genome Project—the current status and, more importantly, where it promises to take us. I ask that my written testimony be included in the record of this hearing.
The Human Genome Project has broken new ground on a number of fronts. In undertaking to understand human biology at the level of the fundamental building blocks of life, the Human Genome Project is the largest, most ambitious biological research effort ever launched. Accomplishing this monumental goal requires the combined forces of a truly international workforce drawn from across the public and private sectors. This newly forged partnership is appropriate because we stand to gain enormous benefits, not the least of which is a revolution in the way medicine will come to be practiced in the new millennium.
Today we are looking at completion of the "working draft" phase of sequencing the human genome later this spring, with a final version to be completed in 2003. But this achievement does not mark the end of the Human Genome Project. Rather it marks a turning point when attention will shift to the identification of the roughly 100,000 genes embedded in the human genome. From identification scientists move forward to determine the functions of those genes and their complex interactions within the cell, in the body as they send messages to each other, and how the respond to signals from the environment.
Other goals of the Human Genome Project have also been attained. We have completed the chromosome maps and used them to locate the genes associated with scores of diseases, including Parkinson's and Alzheimer's disease, and some forms of heritable cancer. We have a publicly accessible database and the tools to mine it for still other genes. We have interdisciplinary teams of researchers who will lead us into the next phase of gene discovery and functional analysis.
The ultimate goal is to harness this incredible engine of information and use it to drive the development of novel treatments, preventions and cures for human illness. We can envision a time when doctors can prescribe treatments specifically targeted not just to a disease, but the disease as experienced by each individual patient. Which medicine will be most effective and have the fewest or no side effects? Rational drug design can help answer these questions. Which ailments can be prevented by changes in behavior, diet or exercise? Understanding the regulation of gene expression will provide important clues to these mysteries.
Achieving these lofty heights will require the joint efforts of both the public and private sectors, each executing their respective missions. Our strong tradition of public support for fundamental research and private support of shorter-term, commercially focused research, has served us well. President Clinton's and Prime Minister Blair's joint statement, issued last month, describes the dual principles of rapid, unencumbered access to raw, fundamental genome sequence information, and the important role of appropriate intellectual property protection that will speed the translation of the sequence information into products that improve the health of humankind. The human genome is a unique, finite, precious biological resource. These principles will ensure that it is utilized to its fullest.
Constructing a productive public-private partnership is not always an easy task, given the difference in their missions. However, once attained, such a partnership can create mutual benefits and serve each party well. I want to take this opportunity to note that discussions between the Federal Government, Celera Genomics, and other companies, have taken place, will continue to take place, and are welcome, with the hope that such mutually beneficial grounds can be found. The cooperative effort that resulted in the completion of Drosophila project led by Dr. Venter and Dr. Rubin is a superb example of the fruits of this kind of collaboration.
Genomic discoveries will clearly raise
social and ethical issues as well, which will require our attention as
a public, as companies, as researchers, citizens, medical practitioners,
policy makers, and entrepreneurs. It has been the policy of this Administration
to encourage all of these communities to work together as we move along,
so that as we increase our understanding of the science, we also advance
our understanding of the important social issues that are involved. From
the outset, three to five percent of the Human Genome Project budget has
been devoted to the ethical, legal, and social issues raised by genetics
I am excited to live in a time when change is so rapid and so remarkable. I am thrilled to witness the new partnerships that transcend national boundaries. I am happy to see the public and private sectors join forces to speed our rate of progress toward completion of what may turn out to be the most significant achievement of our time.
Thank you, again, Mr. Chairman, for this chance to discuss this important program with you today.