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Sick Babies Denied Treatment Thanks To Patents

from the think-of-the-children dept

Wed, Dec 3rd 2008 11:44am — Mike Masnick

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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Filed Under: australia, epilepsy, genes, patents

43 Comments

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Anonymous Coward, 3 Dec 2008 @ 11:46am

won't somebody please think about the children
Yes, I still hate this line, but as it appears to be the only one that works...
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Phillip, 3 Dec 2008 @ 11:51am

Now we have some Pathos...
...for patent reformation!

I'm looking forward to seeing how the current patent system supporters justify baby killing.

*Awaits the Fireworks*
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Anonymous Coward, 3 Dec 2008 @ 12:01pm

I should really apply for a patent for the process of making a baby...
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Anonymous Coward, 3 Dec 2008 @ 12:23pm

Re:
I have gigs of prior art if you're interested...
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Jesse, 3 Dec 2008 @ 12:23pm

Maybe you could patent different positions
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vrobca, 3 Dec 2008 @ 12:26pm

Consumption and Globalization comes before quality of human life
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Anonymous Coward, 3 Dec 2008 @ 12:27pm

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.
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Anonymous Coward, 3 Dec 2008 @ 12:27pm

Gotcha!!
From now on your (site's) tagline will be: "Patents kill babies!"
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Anonymous Coward, 3 Dec 2008 @ 12:34pm

Re:
isn't there a law against holding back treatment that saves a life?

In the US, I believe that's true. Perhaps (and apparently) not so in Australia.
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Anonymous Coward, 3 Dec 2008 @ 12:38pm

So what law do you want changed? America's? Australia's? Different countries have different laws.
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Anonymous Coward, 3 Dec 2008 @ 12:40pm

This makes an interesting argument against 'first to register'. I assume that there's prior art in the form of living humans with this particular gene older than the patent.
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Anonymous Coward, 3 Dec 2008 @ 12:41pm

Hmmmm.... would you object if treatment were delayed for financial reasons? Perhaps the last sentence could read "When lack of money is being used to stop diagnosing a patient with a serious disease, we should all be asking how the system went so wrong." You socialist! ;)
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Anonymous Coward, 3 Dec 2008 @ 12:48pm

If the couple then decide to sue Genetic Technologies and Mervyn Jacobson for burial/memorial costs, it will make a great news story!
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Cloksin, 3 Dec 2008 @ 1:18pm

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?
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eleete, 3 Dec 2008 @ 1:55pm

Re:
Sure all that's true, but c'mooooon, owning bits and pieces of nature, setting up a toll booth on basic reality, that doesn't have a cool ring to it ? Cha-Chinggg ?
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Anonymous Coward, 3 Dec 2008 @ 2:04pm

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?
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hegemon13, 3 Dec 2008 @ 2:11pm

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?
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Anonymous Coward, 3 Dec 2008 @ 2:41pm

Re:
lol and very good point
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Anonymous Coward, 3 Dec 2008 @ 2:42pm

So, assuming a baby costs three loaves of bread to produce, if I download a copy of the baby, is it considered piracy?
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Anonymous Coward, 3 Dec 2008 @ 2:42pm

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".
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Anonymous Coward, 3 Dec 2008 @ 2:44pm

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.
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Esahc (profile), 3 Dec 2008 @ 3:19pm

Re: Re:
Actually Mike didn't get it wrong:
http://en.wikipedia.org/wiki/Gene_patent

But I still agree with your statement.
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Supply Guy, 3 Dec 2008 @ 3:22pm

This is absolutely insane. First the person who thought to patent this needs to share a cell with Charles Manson. Everyone else involved with the patent process needs to get thrown in the same cell as well.
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ConceptJunkie (profile), 3 Dec 2008 @ 5:56pm

Re: Now we have some Pathos...
Believe me, baby killing is small potatoes in the scheme of things people will justify to keep making money.
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Anonymous Coward, 3 Dec 2008 @ 6:37pm

Re: Re:
I have gigs of prior art if you're interested...

Really? So how are things going at that Open Source Personal Genome Project? Is George Church doing well? ;-)
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Anonymous Coward, 3 Dec 2008 @ 6:39pm

Where are all the patent apologists ?

Where is the "Stop the Shilling" person.

Yes, patents protect "the little guy" from the big mean corporations ... err except in this case where it is the other way around. Here, the big corporation is killing the little guy.
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Anonymous Coward, 3 Dec 2008 @ 7:30pm

Darwinism
So what's wrong here? I'm sure the better babies, the ones with the better parents as measured by their wealth, will get the test. It will mostly be the poorer, inferior babies that will get weeded out thus improving the gene pool. Economic Darwinism at it's finest!
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Anonymous Coward, 4 Dec 2008 @ 8:13am

Better than "a dingo stole ma baby"
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bshock, 4 Dec 2008 @ 8:18am

wrong question
How did the [patent] system go so wrong? Simple: it started. The very idea of intellectual property is inherently flawed at best, and inherently corrupt on average.
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Anonymous Coward, 4 Dec 2008 @ 9:01am

Re:
A bad law is a bad law, no matter where it is.
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Anonymous Coward, 4 Dec 2008 @ 9:33am

"Sick Babies Denied Treatment Thanks To Patents"

Slick headline to fan the anti-patent flames. Too bad it is without evidentiary basis.
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Lonnie E. Holder, 4 Dec 2008 @ 10:35am

Re:
No. It is baby infringement, which, though it vaguely sounds like something illegal, is not covered by the RIAA, the MPAA, the PLO or Al-Quaida.
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Anonymous Coward, 4 Dec 2008 @ 11:26am

Re:
"Slick headline to fan the anti-patent flames. Too bad it is without evidentiary basis."

You wish.
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Anonymous Coward, 4 Dec 2008 @ 12:54pm

Re: Re:
Perhaps then you can point to objective evidence as opposed to anecdotal observations.
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Anonymous Coward, 4 Dec 2008 @ 2:39pm

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.
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Anonymous Coward, 4 Dec 2008 @ 3:56pm

Re: Re: Re: 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.
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Anonymous Coward, 4 Dec 2008 @ 6:15pm

Re: Re: Re: Re: 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".
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Anonymous Coward, 4 Dec 2008 @ 10:23pm

Re: Re: Re: Re: Re: 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.
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Anonymous Coward, 4 Dec 2008 @ 10:59pm

Re: Re: Re: Re: Re: Re: 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.
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Mike (profile), 4 Dec 2008 @ 11:15pm

Re: Re: Re: Re: Re: Re: 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.
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Anonymous Coward, 5 Dec 2008 @ 7:43am

Re: Re: Re: Re: Re: Re: Re: Re:
I would much rather be viewed as pulling out something that is pretentious than being the author of an article that on its face is palpably questionable.
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dinnerbell, 5 Dec 2008 @ 7:58am

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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Anonymous Coward, 5 Dec 2008 @ 8:01am

Re: Re: Re: Re: Re: Re: Re: 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.
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