Tuesday, February 14

Sam Adams is on Yelp

News The other day I noticed a curious tweet from our venerable mayor's Twitter account:Yes, Sam is tweet... More

Feb 13, 2012 01:20 pm by RUTH BROWN  | Comments 1
 

Doctor Groups Flex Muscle In Capitol: $2.3 Million in Campaign Cash to Influence Health-Care Reform

News The State Capitol has been abuzz the last couple of days because of a hot list (PDF) circulating in ... More

Feb 10, 2012 06:00 pm by NIGEL JAQUISS  | Comments 4
 

Nonsense Knows No State Boundary: Washington Legislators Get Bogus Job Claims on CRC

News Up north of here, Washington legislators in Olympia are debating whether or not they should authoriz... More

Feb 10, 2012 09:09 am  | Comments 1
 

Occupy Arrestees Win Their Right to Full Trials—Even Though They May Not Need It

News The estimated 160 people arrested during Occupy Portland protests in the past five months have won t... More

Feb 9, 2012 01:24 pm by HANNAH HOFFMAN  | Comments 3
 
 
 
Home · Articles · News · Rogue of the Week · Kaiser Permanente & OHSU
June 21st, 2006 Andra Brosy | Rogue of the Week
 

Kaiser Permanente & OHSU

13 Comments
     
Tags:
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.

 
  • Currently 3.5/5 Stars.
  • 1
  • 2
  • 3
  • 4
  • 5
 
 
 

 

 
06.20.2006 at 09:00 Reply
Kaiser Permanente & OHSUGot this letter and while it didn't surprise me given how I pay thousands to Kaiser to wait in line for basic medical care, I was touched that they would opt me in by default, rather than out.Thanks WW for bringing this up front where it needs to be.—Indee

 

06.20.2006 at 09:00 Reply
Kaiser Permanente & OHSUMaybe I'm missing something, but why wouldn't anyone want their information to be used anonymously for research?—confused

 

06.21.2006 at 09:00 Reply
Kaiser Permanente & OHSUI worked in research and the samples are coded so your name is nowhere to be found or associated with the sample. When there is a research study about a particular disease, these samples are pulled at random. On the top of the tube is a number. The sample is then tested and the results given. The samples are numbered because the researcher cannot hand pick samples from patients or people he/she knows that would support his/her hypothesis; the study would not be valid. Of course it also protects the donors identity. All of this is for a good cause. I don't see why anyone should be upset about this. —Maggy

 

06.21.2006 at 09:00 Reply
Kaiser Permanente & OHSUwell, one of the unspoken issues here is when a researcher uses your genetic material to PATENT a treatment or a cell line or something with huge profit potential. The NYT Sunday Magazine had a big, fascinating article on this a few weeks back. Thorny, tricky issues all around.—michael_pdx

 

06.22.2006 at 09:00 Reply
Kaiser Permanente & OHSUresearcher maggy is not correct... The real question is where did the samples come from and how did they get them. If you die of a heart attack, rest assured that agents for OHSU will be squeezing your blood out of the IV tubes and will request your entire medical record from whatever physician has treated you. If you have a biopsy, the specimens will be kept, and if you have a disease thats "interesting" and haven't opted out, its likely that you're personal information will be gathered.If you have no problem with that, than we should repeal the entire mess of a HIPAA law, along with the Oregon Genetic Privacy Law. This revision will place a burden on all covered entities in the state for the benefit of the new genetics research center at OHSU-- that is why they lobbied so hard to have the law changed.If you do have a problem with it, be aware that none of the metro area state representatives responded to e-mailed questions about how this revision passed.—Fred

 

 
 

Web Design for magazines

Close
Close
Close