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.