Kaiser Permanente & OHSU

[June 21st, 2006] You might want to think twice before tossing that seemingly nondescript letter from Kaiser Permanente or OHSU in the trash. If you choose to ignore it, your health information and biological samples could become fair game for genetics research.

Both healthcare providers have mailed letters to their members in recent months stating that patients may decide if they want their health information or biological samples to be available for future anonymous or coded genetic research.

Sounds fair enough. But the letters also state the providers may glean that genetic information unless you notify them by July 1 that you don't want your personal information and samples used for research.

Such moves are legal, thanks to SB 1025, a bill the Legislature passed last year that requires providers to notify patients and allow them to choose not to have their health information used for research. The information must remain coded to preserve anonymity, and anyone can opt out of the program at any time.

But what's legal and what's fair are two very different things, say letter recipients who feel blindsided by the news.

"I'm a Kaiser member, and I didn't even know about this," says Travis Reep, a representative at the local Better Business Bureau chapter.

"This sounds like something out of a forced-labor camp out of Communist Russia," Kaiser member Kurt Koester emailed WW, which put the Rogue desk on the trail. "I just found the whole thing absurd!"

The letters don't signal a new wave of genetics research in Oregon, according to Evelyn Whitlock, senior investigator at Kaiser Permanente's Center for Health Research. But the letters do give the healthcare providers cover to say, "Hey, we warned you!" if you throw them out with your junk mail.

The Rogue desk thought you'd like a tad more warning.