Wednesday, November 18, 2009

You can't have it both way. Either scared your genome is sold off or not.

I recently read a Times blog post by Mark Henderson because it was referenced by Dan Vorhaus on Twitter. I have to say, I am blown away by the cognitive dissonance here......

entitled " The end of deCODE genetics: are you worried about who holds your DNA?" I was interested in to see whether this was a slash job on deCode or not.....

"Does this worry me? Not really. First of all, as Dr Stefansson pointed out to me yesterday, deCODE was a publicly traded company, listed on the NASDAQ. It was always up for sale, and in a manner of speaking its ownership was changing all the time."

Is he serious? Minor shareholders having access to a company's intellectual property and a hostile board takeover? That is what it would have taken to get the control.....or bankruptcy. Which is yet again another reason why a doctor would be able to protect this data better than a corporation.

Will there be any more doozies in this?

What I found was a hard pill for most to swallow. The end conclusion:

"What's more, though, I've yet to be convinced that there is anything particularly sensitive about an individual's genetic information. For the moment, at least, the sort of genotype data held by deCODEme isn't very useful to anybody other than me -- and even then, its chief value lies in satisfying my curiosity. I'd be much more worried if it was my financial data that was changing hands"

Ok, so here is the problem. Either you believe or you don't believe that your genome will hold useful information that may help predict your risk for disease.

If you do believe, then how could you not be scared about some discovery down the road that may be used against you by the "new owners" of your data?

If you don't believe it is a big deal, then why in the hell did you have the scan in the first place? To write a "news" story? Sorry, I mean PR piece......

In fact that's it. The people who bought these DTC tests were SV tech junkies and piss poor journalists who couldn't get anything else published. Now that they have all used up the story, there is no one left to buy

I do agree with the writer on one thing: There will be more failures. No amount of PR can fix that.

The Sherpa Says: Either you believe or you don't. For those who do, DeCode's failure should shake you. I am certainly glad I chose the IRB approved Coriell Personalized Medicine Collaborative to do my SNP scan.......


Daniel said...

Your posts are becoming increasingly unhinged, Steve, but this one is simply astonishing even by your standards.

"The people who bought these DTC tests were SV tech junkies and piss poor journalists who couldn't get anything else published."

Mark Henderson is Science Editor at The Times. He's not in the habit of writing PR fluff pieces, and he certainly has no trouble getting his work published. Have you even read his piece describing his deCODEme results?

Seriously, get a grip. Just because someone has a different opinion to you doesn't make them a hack; and launching a misdirected salvo at one of the most respected and sensible journalists writing about genetics just makes you look like a fool.

Steve Murphy MD said...

duly noted.

Steve Murphy MD said...

How many respected journalists had their genomes scanned to write articles? I will tell you, based on the LexisNexus I did, over 25.

That is real.

Most of them hadn't written a piece in the last 3 years. Seriously.

Yes Mark may be well respected, but this type of drive by "get a genome scan to bash a company or to laud a company" is a commonly used tactic that is best left for consumer reports.

It is almost as if the journalist wishes to make the story about themselves......

Lastly, he doesn't have a different opinion than me. He thinks the test is bollocks. No not Top Bollocks, just sweaty worthless bollocks.

He even said he thought that before the test.

But these B.S. tests were so "amazing" that he was intrigued?

Seriously Daniel, stop, think and do a math problem first.


Molecular Creativity said...

I thought/think DeCode genetics was a valuable company that did provide significant new information from GWAS and would still be viable but they used Lehman for investments and Not Goldman/Sachs.
Genetic information will/does get to individuals now and is well received by some-see Dr. Collins comments at AAAS last month.
DTC is in transformation but many people will not trust doctors for genetic information for different reasons. I think the number of doctors trained, formally in genetics can be counted in the hundreds at most. Continuing Medical Education has failed us all in the area of medical genetics.

Steve Murphy MD said...

Agreed, CME has failed in this realm. So have the specialty societies. So has the AAMC. This lack of education has created a real gap. That being said

According to Burrill Most patients would prefer and trust their doctors to deliver and interpret genetic test results......

So, no amount of PR will change that one.

It was hopeless to try to end around the physician. What they need to do and now you can see this strategy (Navi and MDVIP) is to include and educate the doctors.

Too bad the test they offer is not nearly as useful as BRCA testing....except 23andME, which HAS BRCA testing.....


Anonymous said...

i think you are an egomaniac