Your personal gene map may be coming soon

ALAN J. MCCOMBS

WASHINGTON, Oct. 6, 2006

Americans may one day walk into their local clinic and have their doctor bring up a file containing only their last checkup but their entire genetic makeup. While the potential may be great, some worry about dangers to privacy and the risk of discrimination.

Already, doctors can order tests to look for genetic risk factors for diseases like cancer or amyotrophic lateral sclerosis, better known as Lou Gehrig's disease.

"It's incredibly promising and offers patients a better alternative to traditional medicine, which is largely trial and error," said Edward Abrahams, executive director of the Personalized Medicine Coalition.

With greater knowledge of a patient's genome, doctors also believe they can tailor drugs to each person's DNA while anticipating adverse reactions.

Currently, genome mapping remains extremely expensive and time consuming. Only a handful of people have had their entire genome mapped; the cost is measured in millions of dollars.

Critics of genome mapping and personalized medicine worry that as the technology becomes less expensive, genetic tests will become as common as drug tests during hiring.

"If you as an employer knew that someone had a predisposition to a disease, even though they haven't shown that disease, there is a huge incentive to discriminate when you consider the cost of healthcare and training," said Jeremy Gruber, legal director of National Workrights Institute in Princeton, N.J.

"People are not going to feel safe until they know they'll be protected from having that information used in a discriminatory manner."

Supporters of federal legislation point to Burlington Northern and Santa Fe Railway Company, which in 2002 settled a lawsuit with the U.S. Equal Employment Opportunity Commission for $2.2 million after it tested or sought to test 36 of its employees without their consent. The railroad denies that it violated the law or engaged in discrimination.

Efforts to legislate specifically against genetic discrimination have met mixed support on Capitol Hill. In 2005 the U.S. Senate overwhelmingly approved a bill, the Genetic Information Nondiscrimination Act, that would ban discrimination by healthcare providers and employers.

President Bush supported the measure; however, a similarly worded U.S. House bill has stalled.

Opponents of the legislation, including the Society for Human Resource Management, the U.S. Chamber of Commerce and the National Association of Manufacturers, say the damages it allows are too broad and risk drowning businesses in red tape.

In addition, employers questioned the need for the bill, given existing regulations such as the Americans with Disabilities Act and Health Insurance Portability and Accountability Act, which aim to prevent discrimination in the workplace.

"In this case we're dealing with something that doesn't appear to be something employers are dealing with," said Michael Eastman, director of labor policy at the U.S. Chamber of Commerce. "We've felt the best thing we can do in this debate is talk about our concerns and try to help people realize how to solve them."

The issue continues to heat up. This week the National Human Genome Research Institute, a branch of the National Institutes of Health, announced $13 million in grants to speed development of human genome research. And a $10 million X Prize was offered to the first organization that can successfully map 100 human genomes in 10 days.

"The idea of having a prize of this sort to inspire even greater energy and a sense of competition in private investment in a goal is something that many of us have been dreaming about," said Dr. Francis Collins, director of the National Human Genome Research Institute at the National Institutes of Health, at the news conference to announce the X Prize.

"It's a very welcome addition to the landscape."

In 1996 the X Prize Foundation offered a similar award for the first private company that could launch a manned vessel into space and then return that same vehicle within two weeks. In 1999 the prize was awarded to Mojave Aerospace Ventures after two successful flights of their suborbital vehicle Spaceship One.

The foundation hopes to award the new prize within seven years, though some experts are skeptical. Even if the goal is reached, the price of testing would need to drop to the $1,000 range to make it practical.