All Your Genes Are Belong To Us

Planet Money
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Automatic TRANSCRIPT

The story of gene patenting kind of starts in the nineteen seventies when scientists figured out how to modify genes in a lab until nineteen eighty living. Things mostly couldn't be patented but that year the supreme court said i guess. These new modified genes are inventions. And pretty soon after that the patent office started granting patents not just on those modified genes but even on genes that scientists had just managed to isolate an extract from the body which started this huge genetic goldrush hundreds of new biotech companies popped up and suddenly the human genome started to look kind of like an uncharted surveyors map with hidden treasure. Worth millions of dollars just lurking out there in the genetic code by the early nineties. One of the biggest genetic treasures was the gene responsible for most cases of inherited breast and ovarian cancer the b. r. c. h. Gene and women with the brca gene have up to a seventy percent chance of getting breast cancer. Compared to about just ten percent for the general population. There was an enormous international race to find this gene and when myriad genetics was founded in one thousand nine hundred one winning the race to find the brca gene was a top priority geneticists. Sean teigen was one of the first people hired at myriad genetics. I had never heard of myriad. In fact i was roughly employee number. Ten sean and myriad hoped that if they could find this gene they could diagnose people at risk of developing breast and ovarian cancer and create tests and treatments for it nasa whereafter in the end is to add years to the lives of the people who buy you know unfortunate chance inherited a mutation in one of these genes. The trick to locating this gene is to identify families where breast cancer clusters. And then if you compare the dna of the people in those families who got cancer versus older people in the family who never got it. It will probably lead you to the gene and in the race to find this gene. Mary has a huge head. Start mostly because of its location in salt lake city. Utah has this comprehensive database of anyone who's developed cancer in the state. It is also home to the mormon church which famously keeps extensive genealogical records show. They're thinking when if just cross-referenced reference those two databases they'd have themselves a ready made pool of promising dna candidates and then they could get straight to mining for mutations sean and his team at myriad get to work. They are working around the clock all hands on deck. How did you guys think about what the stakes were for you. Guys you know in this race returned to arrive there. I i was merely an existential question for the company. There wasn't any doubt about that. It was like if we can find this than the company is going to be successful. And if we don't find it we're probably gonna shrivel up and go hundreds of other scientists around the world were also looking for this gene if myriad doesn't want to shrivel up and go away they have to get to it i after four long years of mining. Dna myriad finally strikes gold they find the mutated gene living on chromosome seventeen from what is now known to be base pair. Forty three million forty four thousand two hundred ninety five to base pair forty three million one hundred twenty five thousand three hundred and sixty four myriad extracts and isolates gene and almost immediately stakes its claim on it by filing a patent but profiting off of that patent turns out to be a whole other problem. There's just no good way to make a drug or treatment based on this gene so instead they focused solely on making a test that would tell people if they have the gene. Though even tasked will be hard to make money off of because brca is like say cova testing where you might get tested over and over or a drug the take every day you know the same person will use a particular patent drug again and again and again and again but they get the information that they are mutations carrier wanted to. They don't need to have that test again. It's done so. The prophet situation is different. Myriad cooks up a solution to this profit problem i. They will make the cadillac of tests the very best cancer gene test of all time and they will charge a premium for it then myriad starts using. Its patent to do what happens. Do best to create a monopoly if anyone else tries to make comprehensive diagnostic test based on their brca genes including some researchers myriad says kindly cease and desist last piece of the prophet puzzle. They get to work driving up demand. Genetic testing for breast cancer was relatively new thing. People didn't really know about it yet. So myriad launched a big marketing campaign aimed mostly at doctors and clinics. But then they test out something that hadn't really been done before with genetic testing breast cancer runs in my family. My mother my dad's sisters. I wondered if it would be inevitable. The trade marketing their test directly to consumers talk to your doctor or visit brac now dot com myriad says they invested around five hundred million dollars to develop and market the test and that they didn't even turn a profit until two thousand eight and says patenting. The gene was the key. That's the only way myriad could get the time and money needed to create what they deemed one of the most sophisticated genetic tests to date attest that gave more than a million people information about their risk for breast and ovarian cancer. But as you may remember not everyone saw myriads business model in the same positive light first of all that direct marketing to a broad swath of consumers less than ten percent of women are even good candidates for this test so there were concerns that myriad was encouraging all of these people to try to get a test that most of them don't even need that cost thousands of dollars before insurance and back at the. Aclu that lawyer. Chris hansen by the mid-2000s he'd spent a few years learning all about gene patenting and looking into the ways myriad was doing business and he had a few concerns of his own for example. Chris says people who did take myriads test might have been getting a false sense of security because his cadillac of tests. The original version of that test did not screen for several dangerous mutations in the gene which came to light after they'd gone to market so that even if you are a result back from myriad saying you're fine you weren't necessarily fine which you know. Science is a process of learning but once myriad realized its mistake and fix the test if customers wanted to take their new and improved. Test that identifies mutations that was gonna cost extra and chris says myriad police it's gene patents so aggressively that no other comprehensive. Brca test was available. So if you were worried that myriad had missed something. There was no way to get a second opinion myriad. Genetics was the only place in the country. You could go if you wanted to be tested other labs could could technically do be. Rca screening were not allowed to do so because of Myriads hat myriad told us. Look we only actually filed two lawsuits against our patent but scientists. We spoke with told us that myriad also sent out a ton of letters that threatened legal action which had basically the same effect of shutting down testing efforts and many scientists were already frustrated with myriad because the race define these genes in the first place had been largely collaborative among scientists around the world and yes myriad had found the gene i but they've done it with the help of everyone else's published work and then they used their patent rights to essentially claim testing for it all to themselves and because really only myriad could test for these genes only they could gather certain kinds of really valuable new data about inherited breast cancer they collected and years of data most of which they also didn't share with the rest of the breast cancer research community. They had this gigantic database of brca one jeans and the various variations of the brca jeans myriad refused to share that database with the scientific community. We spoke to the folks at myriad and they told us that they didn't want to share their genetic database with the broader scientific community out of a concern for patient privacy. They say the pricing of tests has always been proportionate to the costs of developing and bringing them to market and they say they're patent strategy was in line with others in the industry. But chris's concerns went. Far beyond myriads business model far beyond myriad used it's gene patents for him myriad was just a symptom of a much more fundamental issue. The real problem to chris was that genes could even be patented at all. The notion that some private company to own a part of my body and i can't look at it without paying a royalty to some private company seemed to me blindingly obviously a civilization and when chris hansen sees a civil liberties issue. He knows what to

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