Sick Babies Denied Treatment Thanks To Patents

from the think-of-the-children dept

One of the most ridiculous extensions of patent coverage in the past few decades was the decision to allow patents on “genes” for those who discover the genes. Patents aren’t supposed to be allowed for things occurring in nature, and it’s difficult to see how that doesn’t apply to something as basic as genes. Yet, as an anonymous reader wrote in to point out, down in Australia, a company with a patent on a specific gene is causing babies with a severe form of epilepsy to have to delay both diagnosis and treatment. In fact, the delay in treating the babies may miss the sweet spot for treating the disease and preventing brain damage. When patents are being used to stop diagnosing a patient with a serious disease, we should all be asking how the system went so wrong.

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Comments on “Sick Babies Denied Treatment Thanks To Patents”

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43 Comments
Anonymous Coward says:

what’s next – a patent on breathing the air in certain places? “hey you! if you want to be in here you’ll have to hold your breath!”
isn’t there a law against holding back treatment that saves a life?
so what’s it going to take for this to change? i bet nothing will get done unless there is a violent act against the patent holder. i can imagine reading a story one day about a parent whose child dies due to lack of treatment retaliating by blowing up the office of the company owning the patent. if i worked for that company i’d start being scared to go to work in the morning.

Cloksin says:

OK, I’m not sure I get it!

Patenting genes does sound quite immoral and beyond the scope of what patents are intended for, but for the sake of argument, lets say a company does hold a patent on a gene. Does that mean that nobody is allowed to possess that gene without paying a royalty to the patent holder?Wouldn’t that be quite difficult to enforce if it was a gene that everybody is actually born with?

But here is where I am really confused, how does holding a patent on a gene prevent otheres from testing to see if the gene is actually there? You’re not stealing the gene from the patent holder, you’re not trying to sell the gene to others while withholding the profits from the sale from the patent holder? Doesn’t this overstep the boundaries of a patent holders right a wee bit?

Anonymous Coward says:

Re: Re:

Actually, the patent is for a test for the gene. But since it’s patented, nobody else can market a different, possibly less expensive or even more effective, test for the gene.

This is also happening in the US. Hope you don’t have the breast cancer gene — finding out may be impossibly expensive (or completely unavailable), because a single company owns the patent rights to test for the gene.

Is this a great system, or what?

Hey, where’s Angry Dude? Why isn’t he bitching about this patent-related post, like he does every other post? Maybe because it makes the flaws in the patent system so patently obvious?

hegemon13 says:

Re: Re:

FYI – ALL genes are naturally occurring. Mike got it a little wrong. It is not the gene that is patented in these cases, but rather the testing and treatment for it. That may sound better, but it is actually worse. The company who discovered the gene gets to patent testing and treatment related to it, and the patents are usually extremely broad. So, yes, anyone testing for that naturally occurring gene, including someone testing their OWN BODY, would be in violation of the patent. Astonishing, isn’t it?

Anonymous Coward says:

Re: Re: Re:

“…and the patents are usually extremely broad.”

Rarely, if ever, the case…but trying to explain why this is so would be a waste of time on a site that abhors anything to do with patents and copyrights.

If memory serves me correctly, Australia does have the option of exercising the right of “resumption”, the equivalent of what in the US is know as “eminent domain”.

Anonymous Coward says:

As an Australian who was unaware that this crap actually went on, I’m utterly appalled by it. Personally I feel like blowing up the offices of ‘Genetic Technologies’ on behalf of all the dying babies. When I read things like this, I’m ashamed to be an Australian. I didn’t know my country could do such stupid things. I thought we left shit like this to the Americans.

Anonymous Coward says:

Re: Re: Re: Re:

“Perhaps then you can point to objective evidence as opposed to anecdotal observations.”

How about objective anecdotal evidence? Try reading the article at the top of this page. If you want to accuse Julie Robotham of biased journalism I think you need to provide your own evidence. Until then I’ll just consider you another industry shill.

Anonymous Coward says:

Re: Re: Re:2 Re:

I did read the article. Moreover, I have read many other articles promoting the same unsubstantiated claims. These specious claims have been made for years and will likely continue for years to come.

The burden of proof for issues such as this is properly laid at the feet of those who make such claims. If their claims are supported by relevant, objective evidence, then they have properly made their point. To say that one must disprove anectodal evidence to present a persuasive argument is intellectually dishonest. One can easily prove a positive. One cannot, if at all, prove a negative. Fortunately, our courts recognize this fundamental distiction and allocate burdens of proof accordingly.

Thank you for referring to me as a “shill”. It illuminates your capacity for thoughtful consideration of an issue.

Anonymous Coward says:

Re: Re: Re:3 Re:

I did read the article. Moreover, I have read many other articles promoting the same unsubstantiated claims. These specious claims have been made for years and will likely continue for years to come.

Oh, so the doctors are just lying, huh? I see. But of course, you can’t back that up, can you?

The burden of proof for issues such as this is properly laid at the feet of those who make such claims. If their claims are supported by relevant, objective evidence, then they have properly made their point.

There was plenty of evidence given in the article. Just exactly what of it do you dispute?

To say that one must disprove anectodal [sic] evidence to present a persuasive argument is intellectually dishonest.

How’s that? If the evidence is from a know and reputable source that is (unlike you).

Fortunately, our courts recognize this fundamental distiction and allocate burdens of proof accordingly.

You don’t seem to know much about courts either. I don’t believe I’ve ever seen a trial that didn’t involve anecdotal evidence, otherwise know as “testimony”.

Anonymous Coward says:

Re: Re: Re:5 Re:

Based upon your comments it seems clear you are not well informed about the Federal Rules of Civil Procedure, the Federal Rules of Evidence, and other judicially imposed rules governing orderly proceedings before the courts

Again, how’s that? All you ever seem to do is throw out accusations without anything to back them up. But then, what else would one expect from someone trying to whitewash denying treatment to sick babies.

Anonymous Coward says:

Re: Re: Re:6 Re:

Merely FYI, there is nothing in the article even remotely suggesting that sick babies are being denied treatment because a patentee has or is attempting to halt such treatment. Moreover, there are provisions under law that do provide relief should this ever prove to be the case.

While dealing with a different medical topic, here in the US for example surgical procedures performed by doctors are exempt from patent infringement by the provisions of our patent laws. This is particularly beneficial to private hospitals. As for public hospitals, they currently enjoy the benefit under US law of the 11th Amendment’s recognition of state sovereigh immunity. See, for example, the US Supreme Court decisions in Florida Prepaid v. College Savings Bank and College Savings Bank v. Florida Prepaid, cases that further refine state sovereign immunity as first addressed in the Atascadero case issued back about the late 80’s/early 90’s.

Mike (profile) says:

Re: Re: Re:5 Re:

Based upon your comments it seems clear you are not well informed about the Federal Rules of Civil Procedure, the Federal Rules of Evidence, and other judicially imposed rules governing orderly proceedings before the courts.

Ah, MLS. Love this stuff. Any time someone actually pins you on something, you go to the well and pull out some pretentious bullshit.

You must be a blast at parties.

dinnerbell says:

stop the shilling!!!

you are very limited in your account and not forthcoming in details. just more dissembling. you fail to mention before their discovery there was no hope for any children with the mutation. take your pick. all they need to do is establish facilities for the test to be conducted more locally. sounds like a mere administrative remedy to me. get real!

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