The House this week overwhelmingly passed legislation barring businesses from using a person’s genetic information to deny insurance coverage or job opportunities.
The legislation has been introduced in the House for more than 12 years but stalled several times at the committee level. In its first full House vote Wednesday night, it passed with 420 votes out of 423.
The need for consumer protection against genetic discrimination is increasing with advances in science.
Congress spent $3.7 billion on the Human Genome Project, which was completed in 2003. The project’s research results soon could allow for a person to map a gene sequence for less than $1,000, giving parents an accurate prediction of whether their child is “normal” or not. But such information also could lead to discrimination in the workplace or by health insurers.
If the bill is signed into law, an insurance company no longer could reject coverage or charge higher premiums because of a person’s predisposition to a specific disease. Similarly, an employer could not use genetic information in making hiring, firing or promotion decisions.
With the White House’s support and a companion bill in the Senate that has passed in previous years, the legislation’s prospects are solid.
Currently, people’s genetic information is protected by a patchwork of state and federal regulations. The lack of a uniform law preventing genetic discrimination has hindered genetic research and prevented people from undergoing tests out of concern over repercussions, according to the Genetics and Public Policy Center in Washington.
While Americans are generally supportive of the use of genetic information to improve their own health and the health of their families, 92 percent are wary that the information could be used in ways that harm them, according to a public opinion survey by the Genetics and Public Policy Center conducted in late February and early March.
It is estimated that 15,500 genetic disorders affect 13 million Americans.
Since 2003, researchers have identified genetic markers for diseases such as diabetes and cancer. For example, it has been discovered that 15 percent of all cancer patients have an inherited susceptibility.
“The bill will allow us to realize the tremendous potential of genetic research without jeopardizing one of the most fundamental privacies that can be imagined,” said Rep. Louise M. Slaughter, New York Democrat and the bill’s sponsor.
The U.S. filed a major case over the use of genetic tests against Burlington Northern Santa Fe Corp., one of the country’s biggest railroads, in 2000. The federal government said the company illegally genetically tested or attempted to test 36 employees without their knowledge as part of routine diagnostic exams. The Equal Employment Opportunity Commission charged the company was violating the Americans with Disabilities Act.
Burlington Northern recently agreed to pay $2.2 million to settle the charges while not admitting guilt.
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