Sunday, February 24, 2008

Unfounded NYT article

No, I am not talking about McCain. I am talking about the fear of genetic discrimination. In the NYT today there is a wonderful article discussing the genuine fear of discrimination and the lack of proof that it exists.

Francis Collins even noted that this fear stands to make genomic medicine and personalized therapies "Dead on Arrival" Guess what? I think he is right. Our patients at Helix Health of Connecticut have some significant privacy concerns and we assure those at the highest levels of security. How can you do it any other way? Even better, the laws do protect our medical records. What is so amazing is that this article shows people going direct to testing companies like DNATraits and DNA Direct. But what I find more telling is the story of Ms. Grove

Ms. Grove received a DTC test for alpha 1 antitrypsin. She then hid the results from her healthcare provider, hoping to protect herself from insurance discrimination (Which BTW is a completely unfounded fear in states like NY, CT, NJ). But here's what in essence she did. She tied her physician's hands behind his back and blindfolded him and his nurse. This could have resulted in substandard care for some one with her condition. This is a very dangerous precedent!

My friends and readers, genetic testing can stand to benefit you and your healthcare. But only if you allow your healthcare provider to become involved in this decision to test. Why do people run from disclosure? Fear of losing a job or insurance. But did you know, breast MRI screening normally will not get paid for by your insurer, UNLESS you are found to be a BRCA carrier. IF your family history looked like a BRCA family, most Insurers STILL will not pay!

There are rare cases of insurance issues but after a recent slamming of HealthNet for 9 million I think we will see this drop by the wayside nationally. We will see the AG crack down on this BIG TIME.

As for your employer. The ADA has some coverage and protection, but GINA still needs to be passed. The high profile cases? From the NYT

The Equal Employment Opportunities Commission sued the Burlington Northern Santa Fe Railway for secretly testing the blood of employees who had filed compensation claims for carpal-tunnel syndrome in an effort to discover a genetic cause for the symptoms, the case was settled out of court in 2002.
And in 2005 when Eddy Curry, then the center for the Chicago Bulls, refused a genetic test to learn if he was predisposed to a heart ailment, the team traded him to the New York Knicks.

The railway was punished and now all who try that scheme will get smoked too. The Bulls it turns out, were looking to protect Eddy from a life threatening condition. Funny how the perspective changes when you look at it from the other side.

Why the fear of discrimination? Because people have always found ways to discriminate and the public remembers this. So we need records that are secure. How secure do you think that DTC report you are keeping in your house is? What about the nutrigenomic test you showed your friend? Does the public understand that healthcare records or more secure than any non-healthcare company? Listen, you can only be so secure. But the laws do a poor job of protecting your genetic information if it is not stored by a healthcare entity.

The Sherpa Says:

Take the test and hide lose the health benefit. Don't take the test...never get the health benefit, other than that offered from family history (Which is pretty strong evidence) Take the test and have to worry how you can keep the record safe.....either ON YOUR OWN, or with your PROVIDER. Maybe Francis is right, until the public knows what protections exist, we may be looking at a CODE BLUE for genomic medicine. GINA needs passage, but even then there will always be some form of discrimination. The question one needs to ask themselves, does the benefit of genomic knowledge and outcomes outweigh the risk of discrimination. I say YES.


misha said...

Well said, as usual. I would argue the psychological problem is bigger, though: people fear genetic test results in a way that is much more profound than the way they fear disclosure of lipid levels or family hx of just about anything other than maybe mental illness. This fear is genetic determinism pure and simple--old habits die hard.

Steve Murphy MD said...

Thank you very much for your kind words. I agree. Even our marketing team tried to use the term "determining your health risk"
We kindly corrected them.

"There is no genetic shortcoming which cannot be overcome, and no genetic advantage which; if done correctly, cannot be squandered."
-John Setaro M.D.

"I am certain the diagnosis, but uncertain the cure....."

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