You might soon be able to get your hands on a copy of your entire genome for $1,000. But until yesterday, there was no law in sight to prevent others from using your DNA against you.
Yesterday, the Senate voted 95-0 to approve a remarkable bill called the Genetic Information Nondiscrimination Act, which makes it unlawful for employers and insurance companies to demand genetic information or to make hiring, firing or promotion decisions based on someone’s genes.
The Senate has approved genetic nondiscrimination bills with unanimous votes twice before, in 2003 and 2005, but the House didn’t follow through. This time, however, the House is expected to approve it quickly, and President Bush has promised to sign it.
There are more than 1,100 genetic tests available for diseases ranging from breast and colon cancer to Alzheimer’s disease. Some day, tests may also be available for autism.
But until now, many people declined to be tested for disease genes for fear of discrimination. For example, nearly a third of women approached by the National Institutes of Health declined to be tested for breast cancer risk, citing insurance concerns.
With the new law, only patients and their doctors would be allowed to access the results, so people can make decisions based on facts, and not on fear.
"It's the first civil rights bill of the new century of life sciences," Senator Edward Kennedy said. "We made sure today that our laws reflect the [scientific] advances we are making."
Copyright 2008 © Simons Foundation
The field of human genetics continues to advance at an increasing rate so this bill is long overdue. The implications extend beyond health insurance to matters of subtile social discrimination and career opportunities. Most common diseases are due to complex interactions between many genes that enhance or diminish risk rather than cause or prevent a particular disorder. Public scrutiny may lead to oversimplification of this complex web, to the detriment of the individual.
The genetics bill sets a valuable precedent for other areas of biomedical science. As techniques of brain imaging improve and as cognitive scientists refine questions that can be posed to normal and diseased brains, structural and functional images must remain private.