Senator drafts genetics bill
BOISE – A North Idaho senator says Idaho needs to shield the results of testing for genetic disease or people won’t get the tests.
Sen. Joyce Broadsword, R-Sagle, vice chairwoman of the Senate Health and Welfare Committee, is drafting a bill that would require a person’s permission before his or her genetic information can be released to anyone, notably employers and insurance companies.
“I think people are more apt to not have testing done for fear that the information could be used to up their insurance rates or cancel their policies,” Broadsword said.
Ensuring privacy for test results should make people more comfortable getting tested, she said. The tests allow those who are particularly at risk for serious hereditary diseases to seek treatment early and get their affairs in order “before you get to the stage where you can’t make any decisions anymore,” Broadsword said.
“My grandmother had Alzheimer’s,” she said. “Do I go down and be tested to see if I’m predisposed for that so I know whether I have to worry about it or (whether) I can eliminate the worry and relieve myself of that anxiety?”
Thirty states have laws that protect the privacy of genetic information. Broadsword was encouraged to draft a bill for Idaho after a conversation with Utah Rep. Paul Ray, R-Clinton, who championed that state’s genetic privacy law.
“I thought it made common sense,” Broadsword said.
She said the bill should be introduced in the next few weeks after she finishes consulting with insurance companies in hopes of building support. Opposition from the insurance industry helped defeat similar bills in other states, according to Ray.
Idaho insurance representatives so far have little to say about Broadsword’s bill.
“Currently, we don’t use any genetic testing or the results of genetic testing in any of our underwriting material,” Blue Cross of Idaho spokesman Todd McKay said. “Until we see the specifics of the senator’s bill and really kind of dissect it, we really don’t know exactly where it’s going at this time.”
Ray said he decided to introduce the bill in Utah after speaking with representatives from the University of Utah who were concerned about the lack of people seeking testing for genetic diseases.
The effects the law has had in Utah are very positive, Ray said, with the University of Utah reporting a significant increase in the number of people being tested.
“It’s been a difference of night and day,” Ray said. “It’s just done so much for public health here in Utah.”
Jennifer Eichmeyer, a genetic counselor at St. Luke’s Mountain States Tumor Institute, supports genetic privacy and said her patients often inquire about confidentiality and the chances of insurance companies obtaining genetic information.
“In working with cancer, what we see is the real hesitancy is (fear of) genetic discrimination,” Eichmeyer said.
Broadsword declined to name the Idaho organizations she is talking with about the bill until the first draft is complete, but she said the general idea of genetic privacy is supported.
“They all seem to say it makes common sense,” she said.