Senate protects genetic test data

The Baltimore Sun

WASHINGTON -- Coming to grips with the growing role of genetic testing in American life, Congress acted yesterday to outlaw the use of genetic information in employment or insurance decisions.

The Senate approved a measure, which the House of Representatives is expected to ratify and President Bush to sign, that would become the first federal law dealing with the growing role of genetics in the prediction, diagnosis and individualized treatment of disease.

Many patients who could benefit have refused genetic testing out of fear of discrimination, experts say, and potentially groundbreaking research into the molecular causes of disease has been stymied because possible study subjects, fearing repercussions, refuse to participate.

"A cloud has finally blown away," said Dr. Francis S. Collins, director of the National Human Genome Research Institute. The agency estimates that one in three otherwise willing study subjects, worried about what might happen if their genetic information was released, refused to participate, thwarting research on health disparities and colon cancer.

By removing a major obstacle to research and use, the law would essentially clear the way for the wider application of genetic information in medical care, supporters said.

"It's really about a revolution in medicine that we haven't seen since penicillin and the stethoscope, a tool that has not been broadly used so far but will really give us insight into disease and the body," said Sharon Terry, president of the Genetic Alliance, a coalition of interest groups.

Often known by its acronym, GINA, the Genetic Information Nondiscrimination Act would prevent health insurers from using genetic information to deny coverage or raise rates. It would also bar employers from using genetic information in hiring, firing or placement of workers. Neither insurers nor employers could require genetic testing.

Already, 600 laboratories perform tests designed to detect 1,260 inherited conditions or the risk of diseases such as breast cancer, according to Some doctors use the tests to determine the proper dosage of antidepressants and of a drug commonly prescribed to reduce the chance of blood clots.

The most famous example of employment discrimination took place at Burlington Northern Santa Fe Railway, which in 2002 agreed to pay $2.2 million to 36 employees who said the company illegally tested their blood samples to claim that a genetic defect caused workplace injuries.

Patient groups and genetics researchers have been lobbying for years, only to see measures fail in the House in 2003 and 2005.

Some business groups, including the U.S. Chamber of Commerce, argued that the legislation would encourage the filing of frivolous lawsuits and raise compliance issues. E. Neil Trautwein, employee benefits counsel at the National Retail Federation, said federal laws already bar such discrimination.

"We continue to believe that this legislation is not necessary, but having said so, we will work to make sure it has as minimal an impact as possible," he said.

Most recently, Sen. Tom Coburn, an Oklahoma Republican, had blocked the measure in the Senate, fearing that if passed, it would spark a wave of lawsuits against employers. After he lifted his hold, the Senate approved it yesterday, 95-0.

"It's been like waiting for Godot," said Rep. Louise M. Slaughter, a New York Democrat who first proposed similar legislation 13 years ago. Slaughter, a microbiologist with a master's degree in public health, said doctors and women had told her that they've been waiting for such a law before ordering genetic testing for breast cancer risk.

A patchwork of federal rules, a presidential executive order and state laws have provided some protection against discrimination, but their scope varies. And a survey by the Johns Hopkins Genetics and Public Policy Center showed that most Americans remain concerned about corporate access to their genetic information.

When he switched jobs last year, Mark Rabush said he wasn't able to include his first child in his new insurance plan for 10 months because the boy has a rare genetic disorder. Then Rabush wasn't allowed coverage for any medical costs related to his son's disease, Alpha-1 antitrypsin deficiency, which can cause liver disease in adults and children and lung disease in adults.

Now, with the new legal protection on the horizon, Rabush plans to test his 17-month-old second child for the disease. The boy, Quinn, has displayed the same symptoms as his elder brother, and doctors believe he shares the genetic disorder.

"We did make a conscious decision not to test Quinn so there wouldn't be any issues," said Rabush, who moved to Fort Pierce, Fla., from Baltimore late last year.

While the new law would make workplace and health care discrimination illegal, it does not address the use of genetic information for life or disability insurance decisions, a concern among patients who might not be able to work because of an inherited disorder. And the U.S. armed services would not be covered by its provisions.

Among supporters, the next concern is to raise public awareness.

"It's going to be vital that we make sure health care professionals and the public are aware of these new protections, and also make sure health insurers and employers know about them," said Kathy Hudson, director of the Hopkins genetics center. The center plans to monitor the drafting of regulations that would implement the law.

Sun researcher Carol Julian contributed to this article.

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