Manar advances update to Illinois’ genetic privacy law

SPRINGFIELD – A controversial plan before Congress that would permit companies to fine workers who refuse to share their genetic information through workplace wellness programs has prompted Illinois lawmakers to tighten up a state law protecting workers from such repercussions.

“We’re seeing changes proposed at the federal level that are concerning to me and to others,” said Senator Andy Manar, a Bunker Hill Democrat and sponsor of Senate Bill 318. “The goal here is only to protect the genetic information of individuals when that information might be used against them in the employee-employer relationship.”

The legislation advanced out of the Senate Labor Committee Wednesday. It was prompted by news that Congresswoman Virginia Foxx, a Republican from North Carolina, in March proposed the Preserving Employee Wellness Programs Act (HR1313).

Supporters said the measure would enable employers to have the “legal certainty” to promote good health while lowering health-care costs. However, critics said it would allow employers to pressure workers to share their private genetic information by rewarding them with lower health insurance costs, while penalizing those who choose not to disclose such details.

The Winston-Salem Journal, Foxx’s hometown newspaper, called the measure an example of “big government run amok,” in an editorial urging Congress to kill it.

Under Illinois’ Genetic Information Privacy Act, employers must handle genetic testing consistent with the federal laws. It prevents employers from requiring genetic testing as a condition of employment, from changing terms of employment as a result of genetic information, or from classifying employees based on genetic testing. Further, it says testing done in the context of a workplace wellness program is available to employers only in aggregate form, not on an individual basis.
Manar’s proposed update to the law would bar employers from penalizing workers who choose not to disclose their genetic information or do not participate in a program that requires disclosure of their genetic information.

“I think we have a strong law in Illinois, but I don’t think it’s very strong about barring employers from penalizing employees,” he said.

 – From the Illinois Business Journal