More than 100 women complain after cancer test info shared

More than 100 women were sufficiently upset to complain to the Saskatchewan Privacy Commissioner after finding out their cancer test results are routinely shared with the province's cancer agency. The Commissioner's report is available here and CBC's coverage is below:

CBC Saskatchewan - More than 100 women complain after test info shared:

"Last Updated Apr 27 2005 04:38 PM CDT

REGINA – Women in Saskatchewan should have the option of keeping their Pap test results to themselves, rather than having the data go to the province's cancer agency automatically, Privacy Commissioner Gary Dickson says.

On Wednesday, Dickson said more needs to be done to protect women after more than 100 complained of receiving copies of their test results in the mail.

Many women had no idea their private health information and cervical cancer test results were sent to the Saskatchewan Cancer Agency.

"I opened it up and was shocked," recalled Anemarie Buchmann-Gerber of Saskatoon, who thought she received a piece of junk mail. "There was my information from an agency I had never heard of. There were the results of my test."

Thousands of other women received their cancer test results the same way. In some cases, the results were sent to a woman's ex-husband or parents.

"The agency did not have in place what I determined would be all the safeguards," Dickson concluded after a year-long investigation.

Dickson's report recommends doctors do a better job of telling women that their test results will be shared with the province's cancer agency.

Women who don't want to participate in the cancer agency's research should be able to opt out, Dickson said.

Other women said they didn't mind receiving a letter notifying them of their results, or reminding them to get tested.

Hilary Craig has been cancer-free for more than 10 years, but wishes a health professional suggested having a mammogram years ago.

"I would have gone and had my mammogram," the Regina resident said. "Instead, I realized with a terrible sinking heart when I felt the lump. I wondered how much growth happened between when I hadn't went for a mammogram and the time that I had the lump found."

Early detection is critical to many cancer treatments. The cancer agency notes the information they collect is saving lives, but it acknowledges it will have to factor in privacy concerns in using the statistics."