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Why Gene Patents Suck.

Posted Sep 22 2008 4:37pm
So I was on the phone with my good friend Deb Heine. She told me that a great tragedy is occurring.....What is that? Well while everyone was out playing patty cake and hyping 23andMe's democratization of SNP scans, Athena was doing something more dastardly.....Who isAthena? In the late Classical Greek myths, Athena is most commonly described as the daughter of Zeus, born from his head after he swallowed her pregnant mother.

Which I find terribly ironic. Because what Athena is doing is hurting pregnant women everywhere.....

You see, Athena in this case is Athena Diagnostics...

You may be asking who in the heck is Deb Heine? Well she is the founder of theClaire Altman Heine Foundation. Her daughter Claire was born with a horrible disease called Spinal Muscular Atrophy. What's crazy is that the carrier rate of this genetic condition is similar to Cystic Fibrosis. You may be asking yourself...."Doesn't every pregnant woman get offered carrier testing for CF?" The answer is yes.....even women who are not of northern European ancestry have been offered CF screening. Why? CF happens in other populations to, just not as frequently.....

Well, in the case of Spinal Muscular Atrophy(SMA), it IS a pan-ethnic disease! Not just for white people. It is a rate of 1:40 people. That's pretty high...

So what is the big deal? Well, in October the American College of Medical Genetics will be making it policy that every pregnant women be offered carrier screening for SMA.

Whoa! How many women is that in the US? 4,315,000 births in 2007 according to the CDC....that potentially means 4 million plus laboratory tests for SMA....which works in the case of Cystic Fibrosis where there are65 laboratoriesthat do those 4 million samples each year.......

Flash back to Athena, the goddess of war and also the Greek goddess of wisdom, war, the arts, industry, justice and skill. And it's laboratory counterpart who is none of these....

You see, Athena has the patents for SMA testing....and it is now shutting down laboratories all over the country doing this testing. Leaving only 1 laboratory to handle those 4 million samples.....That lab? Genzyme!

This is why patents matter how good Genzyme is...and trust me they are very god at this biz.........There will be a bottleneck, delays and there will be price gouging, that will costs insurers millions of dollars.

So while 23andMe was hailing the democratization of a minimally clinically useful test, Athena was "Dictatorizing" carrier screening and a much more clinically useful test.

The Sherpa Says: This is the problem with healthcare, all the buzz is on a company backed by google rather than on where the real story is. Why hasn't genetics gotten the time it deserves? It's time has come. I just wish the press would pick up on this too. Stop the gene patents, save is just that simple....patent processes if you want...butmake it illegal to patent genes. If we fail on this aspect, we will fail the future of our citizenry.

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