Proposed law could put cancer research at risk over privacy issues

SAN FRANCISCO (KGO) -- Dr. Laura Esserman, M.D., is directing a study at UCSF that could revolutionize the way women are screened for breast cancer. And it relies in part, on genetic data provided by thousands of women who've volunteered their DNA. But now, she's worried that powerful pool of research data could dry up.

"If people think the information may be used against them to discriminate, then people are going to be afraid to participate," says Dr. Esserman.

She's worried about a controversial new bill from house republicans that could help employers to collect genetic data as part of company wellness programs. Workers who don't participate could wind up paying thousands of dollar more in insurance premiums than their colleagues, who get discounts through the programs.

"So it's a huge amount of money for the average worker," says Claudia Center, a lawyer for the American Civil Liberties Union.

Center says that penalty flies in the face of major privacy laws that require most employee medical examinations to be voluntary.

"What we understood as voluntary up until now is voluntary. If you don't want to do it, you don't do it. And what this law says is that voluntary means is you have to pay," Center argues.

Supporters of the bill say the intent is to help bring insurance costs down by supporting wellness programs. But it's also raised major concerns about genetic privacy.

In the early 2000's the federal government sued Burlington Northern railroad for seeking genetic tests from employees who'd complained of carpal tunnel syndrome. UCSF genetics ethicist, Barbara Koenig, Ph.D., says congress later passed the Genetic Information Non-discrimination Act, known as GINA to prevent abuses.

"It's something that could be ill-used by an employer or insurance company if the protections that currently exist from GINA are jeopardized in any away," says Koenig.

Critics fear the house bill could even allow companies to request information from outside tests employees may have had done, either by private companies or as part of a study, which sometimes releases the testing results back to participants.

Dr. Esserman believes that prospect could have a chilling effect on research across the country if would-be volunteers don't want to risk the privacy of their DNA information.

"There is no reason to pass this bill, absolutely no reason. This sets us back. This is the wrong direction and it should just be stopped," says Esserman.

The Affordable Care Act currently bars insurance companies from discriminating based on pre-existing conditions, genetic or not. For now, that protection is still included in current versions of the Republican replacement plan.
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