Tuesday, 19 May 2009

Your boobs are someone else's intellectual property

God bless the American Civil Liberties Union: they're launching a lawsuit challenging the patent on BRCA1 and BRCA2, two genes which, if they mutate, significantly increase women's chances of breast or ovarian cancer.

Intellectual rights to the genes are currently owned by Myriad Genetics, which won't allow other companies to research or test the genes. Women with a family history of breast or ovarian cancer sometimes choose to test for gene mutations, basing important life decisions on the results. Using its monopoly position, Myriad Genetics charges these women US$3,000 for the test.

The rationale for intellectual ownership of genetic material is a market one: the likelihood of profit motivates the owner to invest in research into the genes and related health problems. The Council for Responsible Genetics supports the ACLU's lawsuit, stating:

The patent, a tool originally created to insure that inventors could share in the financial returns and benefits deriving from the use of their inventions, has become the primary mechanism through which the private sector has advanced its claims to ownership over genes, proteins and entire organisms. No individual, institution or corporation should be able to hold patents or claim ownership rights over genes or gene sequences, whether naturally occurring or modified.

It's a good comment - but is there any ethical room at all for patenting in such fundamental areas of human wellbeing? What are the alternatives to market-driven medical science?


DPF:TLDR said...

What are the alternatives to market-driven medical science?
This is one of my recurring arguments with my younger brother, who is currently studying for a phD in biochemistry and will probably go on to be involved in this kind of research one he graduates. He feels that the fact that improvements in healthcare and the spread of market liberalism have expanded roughly simultaneously isn't a coincidence, and it's OK for poor Africans to wait five years for the patent on some life-saving medicine to expire, because if there wasn't the expectation of profit, it would be invented much more slowly.

OK, that's enough of me trying to give his ideas due credit. I, as an arts graduate who doesn't have a lucrative career in some biochemical giant ahead of me, think that's a fairly self serving argument, and think that the fact that the big research dollars are in the hands of corporations is more of an artifact of our current economic arrangements than an unalterable fact that we need to build our scientific-medical establishment around.

Unfortunately, the only real alternative seems to be a state-driven model of research, which I'm not really comfortable with either.

Anna said...

That's exactly my quandary with the whole thing - pointing out the problems with the market model is relatively easy, but thinking up something better is tricky.

There is the 'halfway' option of research conducted through universities (which happens now of course), but so long as pharmaceutical companies are big players, they determine the market conditions under which universities 'compete' - and presumably they can pay researchers better than universities do.

I don't know enough about the relationship between market liberalism and healthcare, but I'm guessing it's not straightforward at all. The state can move pretty quick in matters of scientific research if it wants to - ie warfare technology.

Anonymous said...

I have had the BRCA2 test because of my mothers history of cancer and it was positive. Got my test done in the UK and my family members got tested in NZ. Free.

Is this test monopoly exclusive to the US?

Anna said...

Anon, that's a very hard thing to go through - I'm glad that at least you were able to access the test.

As far as I can see, the patent applies in the US only - or at least, the stuff I read didn't say otherwise. I don't know how patents work, and I'd be interested to hear from any readers who know more about this stuff. I would assume that the state that grants the patent then protects it by preventing copies of drugs (or whatever) crossing the border.

But if that's the case, why did African AIDS sufferers have to wait until the patent lapsed until they could access the drugs they needed - ie why didn't some rival manufacturer just produce cheap drugs from a nation outside the jurisdiction of the patent? Anyone?

DPF:TLDR said...

Anna, if a state had broken patent and started producing generic drugs it would have faced severe sanctions, both from individual pharmaceutical companies and potentially from other states (particularly those whose pharmaceutical industries play a large part in their economy, like Germany, Switzerland, Canada and of course the USA).

That being said if a drug company used its monopoly to charge a truly extortionate price other companies and states might not take such a dim view of the patent being broken.

It's a pretty complex area, and it's possible different patent laws apply to different types of drugs. I'm no expert.

pictishmonster said...

It's possible that the Health Service picked up the cost of Anonymous's and her relative's tests, at a heavily discounted, negotiated rate. Big Pharma is able to charge the US population extortionate sums for drugs, tests, and medical devices because the health care system is so fragmented and broken. If an insurance company paid for such a test, it would be at a greatly discounted rate (i.e. wholesale), but if they don't it is the responsibility of the patient to foot the cost, and the patient pays full price (i.e. retail).

IMESS said...

This is a difficult question - but the fact is that the research which goes into developing a test like this to the point where it reliable enough to be useful is extremely expensive, and usually funded privately. If investors couldn't be guaranteed a return, then most diagnostic tests and drugs wouldn't be developed at all. This doesn't make the situation of people not being able to afford tests or treatments any less distasteful, but I believe it will be partially resolved by putting time and geographical limits in place for patents in the future. Goes to show you that whoever says money is evil doesn't know what they're talking about though, doesn't it. Wealthy countries supply tests to their citizens for free.

Anonymous said...

If investors couldn't be guaranteed a return, then most diagnostic tests and drugs wouldn't be developed at all.

Yea, that's the market liberal approach right there.

DPF:TLDR said...

Whoops... that last was me.