A for-profit genetics testing firm refused to give breast-cancer survivors their own genomic data -- even though they only wanted to donate it to science to help find a cure.
It’s almost too scummy to believe, but it’s the truth. It’s part of a long-running feud between Myriad Genetics -- a corporation that believes it should have the right to profit from our bodies -- and data-sharing advocates -- who think we can do what we like with our bodies -- especially if it means, you know, curing cancer.
It’s especially galling that Myriad is still up to this nonsense. This company actually tried to patent an ovarian and breast cancer gene -- a move that would have stifled cancer research and made the test too expensive for most people. But 100,000 SumOfUs supporters stood up and an Australian Court struck Myriad down.
Apparently, we need to do it again. Tell it to release patients’ genetic records without having to mount a legal challenge first.
This isn’t even the first time the private genetics corporation has been in trouble with American courts. Myriad has already seen its patents for the same gene test revoked by the U.S. Supreme Court after it refused to allow other firms to provide a similar test. But what was clear to the SCOTUS -- and to most humans -- is that you can’t patent naturally occurring genes.
But this latest tantrum is too much. Sure Myriad released the data after the U.S. Civil Liberties Union lodged a formal complaint, but it still thinks that corporations -- not actual patients -- should decide when and if to release the genetic data in our own bodies.
Tell Myriad to agree that our genetic data belongs to us. Provide access to your records now.
More information
Politico. 20 May 2016.
Scientific American. 24 May 2016.