VICTORY: You don't own my genes! Or my data, or my opinions...
But seriously, this has implications for IP and the health/pharma sections of the TPP.
It angers me that people think they can get away with this kind of shifty thinking, limiting access to what is clearly personal and intimate, or public domain in the widest possible sense - and they still think we are stupid enough/unsophisticated enough to let them. Come on! Most of us have seen enough bad SF and horror tales to know what's in store!
I don't recall if it was news or sci-fi, but I thought that in the US, anomylous gene patterns were patentable.
We fought that here and beat it.
That rule isn't Australian law. And it's not, for many parts of the world.
So in many parts of the world there's an artificially high price on what should commonly available information and products (seeds, root stock etc) because a company has taken out a US patent on a bit of naturally occurring genetic material and then built huge businesses out of the royalties from everything that comes from processing it. Communities that used to depend on growing various crops indigenous to an area now have to pay royalties for access to approved strains of those crops, marketed as 'improved yield' or 'pest resistant' (which is usually something natural that's been enhanced), they're not allowed to grow a similar crop that's another variety, and entire trade and aid treaties are written around this kind of stuff. Doesn't matter if we're talking food crops, medicinal plants, crops to feed livestock, the restrictions and royalties based on the patenting of naturally occurring material have been a corporate nightmare outside the US. People have largely ignored it because 'it's poorer nations that are complaining, they always complain'.
But this belief that you can own and control a cell line has also stifled medical research and treatments. A few years ago there was a very famous acknowledgement of a family who finally won their case to have their mother's cell line identified as the donor of the original cells in some groundbreaking diagnostic tool. I think it was cancer related, I can't remember now. For decades medical science has been using generations of her cells (still identifiable) for growing testing lines in labs all around the world; someone made a lot of money from that but her family didn't. I must find a link to that for you.
In this latest case, what's changed is that a corporate lab in the US now doesn't need to be the monopoly dictator of who has access and at what price to the genetic testing for female reproductive cancers. When we consent to having blood taken or a biopsy done here in Australia, that US corporate entity said they owned the cells sent for testing against their 'master' using their procedures, 'oh and by the way there isn't any other way to test, and we also own the procedures that enable treatments to be developed'. If I agree to be tested, that means that company owns my cells, that is they own my genetic makeup. Doesn't that logically mean they own me??? Have I now become a chattel?? I thought America didn't believe in owning other people. More than this: if the company owns my genes, does that mean they own my children's too???
These ethical business issues prey on vulnerable people (women) desperately trying to access vital information to determine the kinds of life-altering surgery they require, how long a life they can expect to live, who else in their immediate bloodline may be affected. Every single facility in the world that provides genetic counselling on female reproductive cancers pays royalties (licensing fees) to this US corporate entity that has 'patented' a mutant gene expression. Nothing can be done to or with 'the breast cancer gene' without its permission. There's no competition, no 'level playing field'. There's no way to say what's more or less high-quality about the core research or treatment.
I'm sorry: too many ideas floating around to keep my argument streamlined and logical. What our High Court has said is, in effective, the genes are natural and you can't patent naturally occurring matter here. If you have a special and unique process for information about them, patent that. And we can talk about what you do with that information (here, patients own their medical information, together with the treating doctors). But, mate, really you can't 'own' patents on what makes up a human being.
Yay for our High Court!
This article explains the IP, policy and research implications so much better than I can. It also has a link for an explainer video.
Another issue I hadn't considered is that so much of the research behind such patented medical tech is publicly funded. Public funding implies a certain amount of widely available access and dissemination for both learning and further research, as well as actual population treatment outcomes.
More interesting rulings, on postings, cyber bullying and online petitions
http://www.abc.net.au/news/2015-11-06/bose-internet-gagging-and-free-speech/6915218
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A great blow for commonsense, intellectual honesty and open research, struck today in Australia as our High Court rules in a genes patent case for cancer treatment.
Makes one want to cheer, loudly.
http://www.theguardian.com/society/2015/oct/07/patient-wins-high-court-challenge-against-companys-cancer-gene-patent
In an unanimous decision on Wednesday, the high court found that an isolated nucleic acid, coding for a BRCA1 protein, with specific variations from the norm that are indicative of susceptibility to breast cancer and ovarian cancer was not a “patentable invention”.