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posted by takyon on Friday August 30 2019, @08:02PM   Printer-friendly
from the you-wouldn't-download-a-lifesaving-drug dept.

Submitted via IRC for SoyCow2718

Biohackers are pirating a cheap version of a million-dollar gene therapy (archive)

Citing the tremendous cost of new drugs, an international group of biohackers say they are creating a knock-off of a million-dollar gene therapy. The drug being copied is Glybera, a gene therapy that was the world's most expensive drug when it came on the market in Europe in 2015 with a $1 million per treatment price tag. Glybera was the first gene therapy ever approved to treat an inherited disease.

Now a band of independent and amateur biologists say they have engineered a prototype of a simpler, low-cost version of Glybera, and they plan to call on university and corporate scientists to help them check, improve, and test it on animals.

The group says it will start sharing the materials and describe their activities this weekend at Biohack the Planet, a conference in Las Vegas that hosts citizen scientists, journalists, and researchers for two days of presentations on body implants, biosafety, and hallucinogens. "This was developed in a shed in Mississippi, a warehouse in Florida, a bedroom in Indiana, and on a computer in Austria," says Gabriel Licina, a biohacker based in South Bend, Indiana. He says the prototype gene therapy cost less than $7,000 to create.

Experts briefed on the biohacking project were divided, with some calling it misguided and unlikely to work. Others say the excessive cost of genetic treatments has left patients without options and created an incentive to pirate genetic breakthroughs.


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  • (Score: 2) by Osamabobama on Friday August 30 2019, @10:47PM

    by Osamabobama (5842) on Friday August 30 2019, @10:47PM (#887948)

    Glybera … didn’t prove cost-effective and was pulled from the market in 2017

    So they get litigious and sue for patent infringement. Their damages come out to zero (plus legal fees), as they aren't even marketing that drug anymore.

    Related question: how soon will the patent expire? Or require renewal?

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