Who gets the prize?

BRCA1 protein.

BRCA1 protein. Image by Eric.

As I write this, bits of me could be flying around the world. As a carrier of the BRCA1 gene mutation, which heightens the risk of breast and ovarian cancer, I belong to a special club, and researchers all want a bit of my blood and tissue. From the moment I got a definitive cancer diagnosis earlier this year, I was signing consent forms. (I have a mental picture of attendants with eskies standing around the table during my five-hour disembowelment in May, waiting for scraps.) I have no problem with this. First, it doesn’t make any difference to me (my diseased guts were otherwise off to the incinerator, and I can deal with giving the odd blood sample). Second, and more importantly, it’s a tiny repayment for the sum total of medical knowledge that is saving my life.

But it’s one thing to give bits of yourself away for medical research, and another to give it away to profiteers. I do remember asking, as I signed one form, about whether Westmead was making any money out of its biobank. No, I was assured,it  charges clients purely for storage, transport and administrative costs. Fair enough.

Meanwhile, something rather odd is happening in the world of the  BRCA1 gene mutation. Earlier this month, the Federal Court found that a private company could own a patent for it. That’s right, a patent for the genetic material itself. I have been trying to get my head around this. A patent applies to an invention. You invent a new widget, you patent it, you reap the profits. But something that occurs in nature? A bit of mutant genetic code? Surely that’s an inheritance, not an invention. Not according to the Federal Court. The court found that the biotechnology company Myriad Genetics was allowed to protect the investment it had made in translating pure research into a viable lab test.

There’s a big problem with this, says Professor Rodney Scott of Newcastle University. Writing in The Conversation after the court’s decision,he explains that a patent means a monopoly. Anyone wanting to test for the BRCA1 gene mutation has to go to Myriad for it, and Myriad gets to charge what it likes.

“This is clearly not a desirable outcome for society because it means we fail to protect vulnerable people who fear they have an illness from exploitation,” he writes.

I had my own genetic test in January 2011. I didn’t have to pay for it because, after a public backlash in 2008, Myriad agreed to waive its patent rights in Australia. (Women in the US, meanwhile, were paying thousands of dollars to Myriad for the test.) But now Myriad are ba-ack, lawyers in tow. Cancer activists are dismayed by this turn of events.

Another person dismayed by Myriad’s actions is Dr. Mary-Claire King, the geneticist who first discovered the BRCA1 gene mutation.

“What was different about Myriad was its insistence that it was the only entity that could do the test and its aggressive efforts to shut down anyone else,” she told New Scientist last year.

Tomorrow, Dr. King will be awarded a Lasker Prize partly for her discovery of the BRCA1 gene mutation. Her own lifetime of research, conducted in university laboratories, shows that money isn’t the only driving force when it comes to medical research. Curiosity and the intellectual challenge for its own sake are also great drivers.

I’m not against private companies finding ways to translate pure research into commercial ventures. But it feels very strange to be partly owned by Myriad Genetics. Patents over the  very stuff of life – evolution’s work over millennia – just shouldn’t be allowed.

Footnote: In my Googling for this piece, I discovered there’s a movie called Decoding Annie Parker about the work of Dr. Mary-Claire King starring Helen Hunt. It didn’t get great reviews, but I’m going to track it down.

Another footnote: The picture of the BRCA1 protein above is just crying out to be crocheted, I feel. Some spirals, some carefully arranged bits of yarn … could be fun.

One last footnote: Thanks to Mike Woodhall for alerting me to the Lasker award for Dr. King.

7 thoughts on “Who gets the prize?

  1. Jane

    Political incorrectness gone mad! I share your incomprehension. And look forward to seeing the upcoming crochet.

  2. Anne Powles

    I, too, look forward to seeing pictures of your new genetic crochet work.

    I think there is no doubt that the old laws regarding both patents and copyright need a complete overhaul. I know that our present investigative and communication developments were not even envisaged in the far distance at the times these laws were enacted. In this modern day they defy our experiences (and therefore our logic).

  3. Karin Mainwaring

    I believe there is some problem with the sophistication of Australian patenting law that allows this counter-intuitive judgment to be made and upheld.
    In terms of appeals, there is, now, only the High Court left. My understanding is, that the very quality and constraints of patenting law, as they currently exist, make an appeal at this time risky.
    A dangerous conundrum that proves the old adage “The Law is an Ass” true in this instance.

  4. Barry

    Back in the early ‘90’s, while living in Sydney I knew a guy who worked for one of those fancy “communications” companies that worked with major corporations to make them appear, well, nice.

    He was once called in by some Big Pharma outfit because gay rights activists were making their life hell for charging people for anti-HIV drugs.

    He said that he suggested to the executives that they just give the drug away for free. They looked at him like he was talking Martian. So he asked how much profit they were making out of it and it turned out to be negligible.

    So, they started giving the drug out freely and reaping a sweet, cuddly, feel-good image out of it. Kinda gives you a nice runny feeling in the chest, doesn’t it? Big Pharma is phucked.

    But it proves that activism works. I wonder if Myriad would be moved if they started receiving a whole lot of little colostomy bags in the mail?

  5. Tracy Post author

    Ha ha ha Bazz – that’s a very “moving” idea about the colostomy bags. Actually the outcry in 2008 made a big difference so I guess we just have to keep on outcrying.

  6. Marion Diamond

    I’ve also had breast cancer, though not with BRCA1, and like you, I’m very happy to volunteer myself for research projects – as a result my body hasn’t been in such demand for 40 years! But it appals me when scientific research gets taken over by private profit, as has happened here. Return on investment, fine; monopoly control of research, definitely not.

    Just today I heard there’s a possible link between BRCA1 and testicular cancer in men – and I wonder how men will feel about this objectification of their bodies.

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