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Championing Human Genome Research: We need to keep urging for increased public support for research

Type: Alliance Views
Date: Fall 2000
Related Topics: Health, Research
With all the publicity surrounding the recent mapping of the human genome, it's hard to believe the project was ever less than wildly popular.

With all the publicity surrounding the recent mapping of the human genome, it's hard to believe the project was ever less than wildly popular. However, like many other major scientific advances before it, this undertaking initially needed voices to speak out in its support.

And from the beginning, the Alliance spoke.

One of the first times the Alliance testified on Capitol Hill [in 1986] was before a committee urging Congress to support funding for expanding what was, at that time, a very early but promising effort: creating a physical map and determining the sequence of every gene in human cells. At the time, the Alliance had two main goals we urged the Congress to consider.

First, we explained that better understanding of the human genome would allow us to understand the diseases that express themselves later in life and pose a national challenge in terms of preventing, slowing, or curing them. Without such understanding, the diseases of aging hold captive much of health care for the next century, due to their enormous costs.

Second, mapping the human genome would also shed light on the genetic basis of the fundamental processes of human aging, separate from disease. What are the genes that guide the processes of aging, making us more vulnerable to many diseases and conditions which we commonly associate with aging — diabetes, joint problems, loss of cognitive function? Mapping the genome could help us find out.

After testifying in 1986, the Alliance organized a national meeting that included scientists, policymakers, patients, physicians, and nonprofit health organizations. At that time, it was the largest gathering of scientists and policymakers to consider the potential medical benefits of a better understanding of the human genome. Participants included James Watson, co-discoverer of the structure of DNA; Leroy Hood, Sidney Brenner, and other giants of human genetics.

The Alliance needed a co-sponsor — and found one in the American Medical Association — because at the time, we were not well-known enough in the field.

That has changed somewhat. This past spring, I was invited to the White House for the announcement that the human genome had been mapped, both by the National Human Genome Research Institute and by Celera Genomics, a private biotechnology company.

Having helped create the political atmosphere that made possible the rapid completion of the human genome map, the Alliance's great hope is that we will be able to delay the onset of some major diseases of aging — Alzheimer's disease, osteoporosis, diabetes, and stroke — so that people may be able to avoid their ravages for many years and enjoy a higher quality of life.

The more we probe the deepest mysteries of human life at the levels of cells and genes, the more there will be resistance from people who are afraid of the unknown or do not understand the scientific process or its potential. The Alliance sees part of its role as being there to inform the public and educate the broadest number of people, and to work to see that the policies that encourage science are in concurrence with the broadest principles of ethics.

In the future, we want to continue to urge an acceleration of research in all diseases of aging. It's by no means certain that the federal government will continue to fund biomedical research at a high level. Should the economy take a downturn or other priorities take over, someone needs to be there urging for increased public support for research.

One of those "someones" will certainly be — as it has been for the past 14 years — the Alliance for Aging Research.

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