The House passed the Genetic Information Non-Discrimination Act Thursday, joining the Senate in approving a bill more than 10 years in the making.
The bill, expected to be signed by President Bush, will prohibit health insurance companies and employers from attempting to discriminate against people based on their genetic information.
Congress, researchers and other stakeholders hail passage of the bill as an effort to support life-saving drug discoveries based on genetic analysis.
At the Bio-IT World Conference in Boston April 30, genetic scientists and other experts said the bill is a step in the right direction, but some questioned its ability to ensure nondiscrimination.
Right now only a handful of companies provide genetic testing, but experts think genetic testing will become commonplace in the relatively near future. As genetic testing increases, "the stakes will get higher, fast," said George Church, professor of genetics and director of the Center for Computational Genetics at Harvard Medical School.
Jeffry Drazen, MD, a professor at Harvard Medical School and editor-in-chief of the New England Journal of Medicine, said he is concerned about insurance companies playing fair, even with the law in place. "It will take incredible diligence to make the policy stick," he said.
Dietrich Stephan, chief science officer at Navigenics, Inc., said it would be "unconscionable" to ignore the benefits of genetic testing for fear of discrimination or other concerns. Other experts at the Bio-IT World Conference agreed that the benefits of genetic testing far outweigh the concerns.
Some conference attendees were concerned that privacy breaches of an individual's genetic information could take place in a number of ways that have not yet been addressed, including the interception and tampering with a spit sample to be used for DNA testing; company takeovers of genetic testing firms causing changes in privacy policies; and hacking of electronic medical records, employment records or insurance records where genetic information might be stored.