The Senate Health, Education, Labor and Pensions (HELP) Committee has approved a bill introduced by Sens. Edward Kennedy (D-Mass.), Mike Enzi (R-Wyo.) and Olympia Snowe (R-Maine) that would prohibit genetic discrimination by health insurers and employers.
Kennedy, chairman of the HELP Committee, called the Genetic Information Nondiscrimination Act (GINA) "the first civil rights bill of the new century of life sciences" and said it would encourage people to use genetic testing without fear of repercussions.
The bill opens "a new frontier in medicine" where knowing a patient's genetic makeup can improve care, he said. "This legislation opens to door to modern medical progress for millions and millions of Americans. It means that people whose genetic profiles put them at risk of cancer and other serious conditions can get tested and seek treatment without fear of losing their privacy, their jobs and their health insurance."
With the human genome only recently unraveled by scientists, Enzi said the bill would encourage genetic testing by establishing basic protections from the beginning.
"We are far better off setting uniform, consistent rules of the road clearly and up front, rather than allowing them to be set piecemeal through litigation," he said.
The bill includes measures to prevent health insurers from adjusting premiums based on genetic testing, prohibits enrollment restrictions and forbids requiring genetic testing to qualify for insurance. It would prohibit employers from discriminating on the basis of genetic information in hiring, compensation and other personnel processes. It would prohibit the collection of genetic information and would require employers to confidentially maintain any genetic information they possess.
America's Health Insurance Plans (AHIP) President Karen Ignagni said her group supports the bill. "This landmark legislation preserves patients' access to high quality healthcare services in the emerging field of genetic medicine," she said.
Privacy activist Deborah Peel, founder of Patient Privacy Rights, has said the release of a patient's genetic information through improperly protected healthcare information technology is of dire concern. She is pressing Congress to pass only healthcare IT advancement bills with proper privacy protection.
The bill has bipartisan support and a companion bill in the House is currently being drafted, according to Kennedy.