October 12, 2004

BY ROBERT S. BOYD
FREE PRESS WASHINGTON STAFF

WASHINGTON -- Thousands of scientists labored, at a cost of billions of dollars, to decipher the human genome, but so far their efforts have made little change in health care, a panel of experts reported. The why is revealing:

"Most health professionals don't know anything about genetics except what they read in the newspapers," said Sharon Kardia, an epidemiologist at the University of Michigan School of Public Health.

The genome is the collection of all 30,000 genes in the human body. In April 2003, researchers finished reading the 3 billion letters, or chemical units of DNA, that make up the genome.

Scientists and policy makers hailed the achievement as the dawn of a new era in biology and medicine, comparable in scope to landing humans on the moon. They forecast a day when doctors could personalize cancer treatments, for instance.

But ignorance -- and fear and cost questions -- have delayed the expected benefits, the government-sponsored Committee on Genomics and the Public's Health was told last week by two dozen doctors and health care experts during a two-day workshop at the National Academy of Sciences in Washington.

"Hospitals, clinics and physicians have no systems for integrating genomic technologies into practice," said Dr. Scott Ramsey, an authority on medical technology at the Fred Hutchinson Cancer Research Center in Seattle.

One hope of the genome project was to speed the prevention and treatment of cancer. Except for a few new drugs, such as Herceptin for breast cancer and Iressa for a form of lung cancer, little progress has been made.

Despite an "avalanche of genomic information ... cancers remain a largely unsolved set of medical problems," said Dr. Gilbert Omenn, a cancer genetics specialist at the University of Michigan and president-elect of the American Association for the Advancement of Science. To treat them, he said, "we continue to rely on highly toxic drugs."

Kardia, the U-M epidemiologist, said: "There are so many aspects of this new biology that we haven't got a handle on. When we try to move from molecules to health care, we often stumble."

Speakers at the workshop told of a climate of fear. Citizens are often reluctant to be tested for genetic defects, partly because they are afraid they'll lose their health insurance.

Cost considerations are also delaying the widespread adoption of genetic testing for disease.

"Genetic technologies can be costly both to individuals and society," Ramsey said.

For example, Ramsey said, a genetic test for a common type of colorectal cancer costs $1,500 to $3,000. With nearly 130,000 new cases detected every year, the cost of testing could reach almost $400 million. He questioned whether such widespread testing is "a wise use of scarce medical resources."