Tuesday, April 08, 2008

It's 10:00...do you know where your medical record is?

I've been meaning to blog this once since I saw it a couple of weeks ago: Perlegen Sciences, a spinoff of Affymetrix and a "recognized leader in genomics" (by their own lights) recently signed a deal with an electronic medical records (EMR) company for rights to the medical data of 4 million patients. According to the Perlegen press release, the data will be mined for "genetic markers that could help predict patient response to certain treatments." Patients who meet defined criteria will be sought--through their personal physicians, no less--to obtain samples of their DNA.

The EMR company isn't identified--a smart PR decision, I'm sure--but they will receive subscription and program fees, as well as "milestone payments" for new products that are developed as a result of the collaboration.

I hardly know where to start with this. First, patients' records are being provided, without consent, to a third party. Not for the common good, but for corporate profit. The EMR company will supposedly not share patients' identities with Perlegen--just their records--but it's unclear what happens down the road with genetic information (which is, as I have mentioned here before, not capable of being wholly de-identified). The fact that physicians are being recruited into this process as well--and that they will presumably get their cut--is problematic. The more old-fashioned among us still think that doctors have a fiduciary responsibility to patients that would preclude this kind of behavior.

All this money will likely come from pharmaceutical companies that are vying to produce tailored drugs. When the drugs hit the market, you can bet that the patients whose records were used will not be receiving a price break.

The final straw? The EMR company is not named, and won't be--so patients have absolutely no recourse or ability to opt out of this project.

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Edited to add this link to a story on Pharmacogenomics Reporter and another from Healthcare IT News. Apparently I'm not the only person who has a problem with this development: Patient Privacy Rights doesn't like it either.

1 comment:

Marcy Darnovsky said...

Sue, you really nailed this one. And it only gets scarier when you think about the personal genomics companies who are already going to have possession of your DNA sample – since you’ve sent them your spit or cheek swab in exchange for their predictions about your future health.

We’ve posted a pointer to your piece on Biopolitical Times, here http://biopoliticaltimes.org/article.php?id=4016

Women’s Bioethics Blog readers may also be interested in some of our takes on the personal genomics bandwagon:

The Gullible Gene? http://biopoliticaltimes.org/article.php?id=3993

Genomes of the Rich and Famous http://biopoliticaltimes.org/article.php?id=3951

Googling Your Genes? http://geneticsandsociety.org/article.php?id=3536