Patents Now Getting In The Way Of Important Brain Research

from the promoting-the-progress dept

Tue, May 25th 2010 11:11am — Mike Masnick

Slashdot points us to yet another in a very long line of stories about patents holding back key, potentially life-saving, research. This story involves a biotech firm, StemCells, that is making a legal threat to a hospital doing research on brain diseases in children. Because of the threats, the research has been shut down for three years:

With his research stymied, "all the money has shifted from the lab to the lawyers," said Schwartz, who said he believes the cells may hold deep secrets to such devastating conditions as autism, brain cancer and neurological disease.

What's really annoying here is that the doctor doing this research at the hospital had developed the technique himself with some others at the Salk Institute, but they chose not to patent it (perhaps following in the footsteps of Jonas Salk himself, who when asked about patenting the polio vaccine replied: "There is no patent. Could you patent the sun?"). Of course, StemCells jumped in and patented the technique themselves, and then went after the doctor in the midst of his research.

Apparently, "promoting the progress" doesn't include saving kids from deadly brain diseases.

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Filed Under: brain, patents, research
Companies: stemcells

58 Comments

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Anonymous Coward, 25 May 2010 @ 11:16am

except that if the doctor was pursuing this before, he can easily show "prior art" and just move on. i don't see the difficulty here, unless we dont have all the facts.
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Anonymous Coward, 25 May 2010 @ 11:28am

Re:
Move on? To what, years spent in a court of law?

Patents are better than curing sick kids.
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cc (profile), 25 May 2010 @ 11:29am

Not wanting to be pedantic, but you meant "Patent *Row" in the title.
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Anonymous Coward, 25 May 2010 @ 11:37am

Re:
If there was prior art, why was the patent granted in the first place?

The system is broken either way. It's time to nuke it.
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A Lawyer, 25 May 2010 @ 11:41am

Go Patents!
With his research stymied, "all the money has shifted from the lab to the lawyers,"

Well now, that's a much better use of the money anyway. See how useful patents can be?
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A Dan (profile), 25 May 2010 @ 11:41am

Re:
No, I think he said what he meant. Think "Patents are now getting in the way of..." without the "are".
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Anonymous Coward, 25 May 2010 @ 11:41am

ask tam about the need FOR BRAIN research
CAPITY DO DAH , CAPITTY EH. MY OH MY WHAT A CAPITAL DAY.
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DocMenach (profile), 25 May 2010 @ 11:41am

Re:
Lower Case Coward: You make it sound so simple, yet it is not. He can't just say "prior art" and be done with it. There are legal proceedings that now must be gone through, and as stated in the article the hospital has shifted his funding to the lawyers to deal with the issue. So he now doesn't have the funding to do his research.

This just shows how broken the system is.
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NAMELESS.ONE, 25 May 2010 @ 11:42am

@1 until said doctor is sued anyways
which is why it causes people not to enter or try to do things in such fields.

YUP PROGRESS IT ROCKS.
NOW we can say IP is KILLING PEOPLE TOO
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Anonymous Coward, 25 May 2010 @ 11:43am

Re: Re:
Paying healthy lawyers is better than curing sick kids.
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:Lobo Santo (profile), 25 May 2010 @ 11:50am

Re: Re: Re:
No no no... Shooting healthy lawyers is better than curing sick kids.
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Anonymous Coward, 25 May 2010 @ 11:55am

Re: Re: Re: Re:
If only shooting lawyers cured sick kids.
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angry dude, 25 May 2010 @ 11:56am

from brains-by-the-pound department
Mikey needs a lobotomy ASAP

Doctor's order !!!
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Brandon (profile), 25 May 2010 @ 11:58am

Re:
As easy as it may sound to just show prior art, it can be quite complicated and years before the suit even gets to that point. "Prior art" isn't an immediate end to a patent lawsuit and the suit can drag for years, stifling innovation and freezing research during that time due to costs and any injunctions in place.

Example 1:
http://opensource.com/law/10/5/total-victory-patent-lawsuit-against-open-source-software

The above lawsuit filed Oct 19th 2007 just completed not long ago (Aug 2010) ref: http://dockets.justia.com/docket/court-txedce/case_no-2:2007cv00447/case_id-105833/

Another one (not prior art, but obviousness) is detailed here: http://www.patenthawk.com/blog/2009/12/actually_factual.html

The case looks to be opened in May '07 and decided in Dec '09.

My point is, even if a case is open and shut its rarely a quick or cheap process. In many cases (If I had more time I'd start outlining more citations) the cost of managing such cases can quickly deplete funds that were originally intended for research, innovation, etc.

In my opinion this is clear abuse of the patent system, once you get past the moral outrage of "ZOMG! WHAT ABOUT THE CHILDREN!?"

No matter where you are on the patent debate, if the claim is legit then its legit until the law is changed. Many people would rather express outrage than actually try to get the laws changed, but that's a whole 'nother issue.
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Anonymous Coward, 25 May 2010 @ 11:59am

Re: ask tam about the need FOR BRAIN research
don't you mean NAMELESS.ONE day?
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Anonymous Coward, 25 May 2010 @ 12:07pm

Re: from brains-by-the-pound department
Was it that great for you?
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Esahc (profile), 25 May 2010 @ 12:16pm

Re: from brains-by-the-pound department
Quite a compelling argument you have.
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igf1, 25 May 2010 @ 12:23pm

Re: Re: Re: Re: Re:
it's worth a try..
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Hephaestus (profile), 25 May 2010 @ 12:25pm

a couple more for that WHO study
We have 75,000,000 people dead because of pharma patents, now lets add a couple kids with brain disease to the total ...

just forget it, its a rounding error ...
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Anonymous Coward, 25 May 2010 @ 12:26pm

Re: Re:
The founding fathers warned us against monopoly abuse. As James Madison notes

"But grants of this sort can be justified in very peculiar cases only, if at all; the danger being very great that the good resulting from the operation of the monopoly, will be overbalanced by the evil effect of the precedent; and it being not impossible that the monopoly itself, in its original operation, may produce more evil than good."

Googlebook

http://www.constitution.org/jm/18191213_monopolies.htm

Jefferson's response

"the benefit even of limited monopolies is too doubtful to be opposed to that of their general suppression."

http://digital-law-online.info/patry/patry4.html

Also see

http://www.techdirt.com/articles/20100514/0126329423.shtml

Jefferson initially didn't want patents or copyrights to be included in the list of monopolies, he did later change his mind but was very skeptical of them and thought they should be used very sparingly if at all.

Jefferson also notes

"generally speaking, other nations have thought that these monopolies produce more embarrassment than advantage to society; and it may be observed that the nations which refuse monopolies of invention, are as fruitful as England in new and useful devices."

http://press-pubs.uchicago.edu/founders/documents/a1_8_8s12.html

Again, the founding fathers have warned us about the dangers of intellectual "property" and how it tends to be abused, and were very skeptical about it, but only included it reluctantly with limitations.

and for those who claim that intellectual property is a natural right, or that the founding fathers thought it was somehow a natural right, read

"Considering the exclusive right to invention as given not of natural right, but for the benefit of society, I know well the difficulty of drawing a line between the things which are worth to the public the embarrassment of an exclusive patent, and those which are not."

From Thomas Jefferson
(same link above)

It's a LEGAL right, NOT a natural right. To take the constitution out of the context of those who wrote it is disingenuous.
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Anonymous Coward, 25 May 2010 @ 12:34pm

Before bellowing "It's all about the kids..." it is useful to try and figure out what the fuss is all about, rather than assuming the worst and using a situation as yet another attack on patents.

Since no one knows what the heck is going on between the parties, it hardly seems appropriate to rely on a newspaper article to support your arguments and attention grabbing headline.

You may find it of interest that the majority of the funding used by the CHOC is in the form of grants from the NIH, in which case patents are not an issue. Second, to the extent research is being conducted in affiliation with universities under the auspices of the Regents for the California Universities system, once again patents may be a non-issue.

Moral panics are easy to create. Opinions having unsubstantiated factual predicates are quite another.
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Anonymous Coward, 25 May 2010 @ 12:39pm

Patents are not the problem, the people that contorl them are not the problem. There is absolutely no reason whatsoever that StemsCells could not just give the doctor a free license to do his reasearch or just choose not to pursue it. Instead they act like assholes and go after the guy. The anger should be directed at StemsCells not at patents.
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igf1, 25 May 2010 @ 12:43pm

Re: from brains-by-the-pound department
Ronny needs a bottleinfrontofme
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Anonymous Coward, 25 May 2010 @ 12:44pm

Re: Re: Re: Re: Re:
In the long run, sure. It means that scientists can get on with their research without worrying about IP abuse. Sure, research takes years, but that's why I said in the long run.
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Ryan, 25 May 2010 @ 12:45pm

Re:
Hmm, no. I'd have to say it's exactly the opposite. Patents are what enabled StemCells to cause problems; if not them, then somebody else. Happens all the time.

You can believe that the world is full of pretty pink ponies and rainbows and that if you show a commercial to the whole country with your social security number plastered across the screen in big red letters nobody would be a big enough asshole to abuse it, but the rest of us live in reality. Getting mad at StemCells does nothing productive; reforming the patent system does.
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Anonymous Coward, 25 May 2010 @ 12:45pm

Re:
Oops, I meant:
Patents are not the problem, the people that control them are the problem.
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Anonymous Coward, 25 May 2010 @ 12:46pm

Re:
And the data you have in hand to show that one of them is being an "a******" is.......?

Facts matter, and as best I can determine they seem to be in short supply concerning this matter.
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Anonymous Coward, 25 May 2010 @ 12:48pm

Re: Re: from brains-by-the-pound department
Why, is that a lyric to a song? Let me contribute...

"I might be drunk, but at least I'm not insane."
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Anonymous Coward, 25 May 2010 @ 12:48pm

Re: from brains-by-the-pound department
That was a really weak troll. Next time at least try a TAM style trolling.
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Anonymous Coward, 25 May 2010 @ 12:53pm

Re: Re:
"This story involves a biotech firm, StemCells, that is making a legal threat to a hospital doing research on brain diseases in children." Obviously, the folks making the decisions at StemCells are assholes, that should be clear.
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Anonymous Coward, 25 May 2010 @ 12:54pm

Re:
"You may find it of interest that the majority of the funding used by the CHOC is in the form of grants from the NIH, in which case patents are not an issue."

This is non sequitur. Clearly, patents are an issue and the money is being spent on something other than R&D due to retarded patent laws.

"Second, to the extent research is being conducted in affiliation with universities under the auspices of the Regents for the California Universities system, once again patents may be a non-issue."

They maybe a non issue or they maybe an issue. That's true for anything that anyone does these days, even if you swing sideways on a swing. Claiming that they maybe a non issue is irrelevant, they are clearly an issue. They may not have been an issue if only an immoral plaintiff chose not to be immoral instead of filing bogus lawsuits, but because the plaintiff didn't chose this route they are an issue.

"Moral panics are easy to create."

You mean like how the RIAA creates a moral panic every time someone competes with them and they want the government to intervene? You mean like how IP maximists create the unsubstantiated moral panic that without IP no one would innovate? You mean like how IP maximists create the unsubstantiated moral panic that infringement is stealing?

"Opinions having unsubstantiated factual predicates are quite another."

You mean like how your opinion and entire post makes no predictions and is completely unsubstantiated?
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Jake, 25 May 2010 @ 1:13pm

Mildly off-topic, but describing autism as a "devastating condition" is a very broad generalisation and actually somewhat insulting.
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Sneeje (profile), 25 May 2010 @ 1:20pm

Re:
If you have proof that it is a moral panic, then present it.

Otherwise, your post is a hand-waving tactic intended to distract. You could make your point about EVERY single article ever written, because no third party ever has all of the facts.

In fact, I could say this about every point you have ever made... TAMs posts are easy to create, but posts that have substantiated facts are quite another.
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Mike Masnick (profile), 25 May 2010 @ 1:42pm

Re:
Before bellowing "It's all about the kids..." it is useful to try and figure out what the fuss is all about, rather than assuming the worst and using a situation as yet another attack on patents.

Sure, and if you have evidence to make that case, you should present it.

Since no one knows what the heck is going on between the parties, it hardly seems appropriate to rely on a newspaper article to support your arguments and attention grabbing headline.

I see. So we shouldn't rely on what's actually being reported. We should rely on...?

You may find it of interest that the majority of the funding used by the CHOC is in the form of grants from the NIH, in which case patents are not an issue.

I see. So the hospital shut down the research program "just because"? Clearly, patents are an issue, otherwise the researchers wouldn't be saying the program had to be shut down due to patents.

Also I'm confused as to why you make this claim. Plenty of research funded by the NIH winds up in patents. Are you suggesting otherwise?

Second, to the extent research is being conducted in affiliation with universities under the auspices of the Regents for the California Universities system, once again patents may be a non-issue.

Are you suggesting a sovereign immunity claim? Again, that seems to be nice in theory, but has nothing to do with reality. If there was a sovereign immunity claim, wouldn't it have been made already, rather than having the program shut down for years?

Moral panics are easy to create. Opinions having unsubstantiated factual predicates are quite another.

Funny, your entire comment provides not a single fact to dispute the story. It just insists the story that was reported on might not be true.

Are you really suggesting the hospital is lying? Do you have proof?
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Anonymous Coward, 25 May 2010 @ 2:20pm

Re: Re:
Nice attempt to shift the burden of proof. It is you, and not me, who is writing this "It's all about the kids" article.

If you are going to present an attention grabbing headline suggesting something nefarious is going on, then at the very least you should present something factual beyond the contents of a newspaper article so general in nature as to convey no useful information.
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Anonymous Coward, 25 May 2010 @ 2:45pm

Re: Re: Re:
Are you serious? No useful information? How is the information presented not useful? and why should anyone present all of the facts when all that's needed are enough relevant facts to come up with a reasonable conclusion?
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Nastybutler77 (profile), 25 May 2010 @ 2:56pm

Re: Re: Re:
"...you should present something factual..."

You mean like the lead researcher saying something like this?

"'There's been a stranglehold put on the field because of this. The access to the science community to cells like this for basic scientific study is virtually nil," he [Schwartz] said.'

But I guess you probably don't think Dr. Schwartz knows what he's talking about either do you? Maybe you didn't RTFA.
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Nastybutler77 (profile), 25 May 2010 @ 3:04pm

Re:
"...describing autism as a "devastating condition" is a very broad generalisation..."

I'm pretty sure being told your child is autistic is pretty devastating when you first hear it. And, depending on the severity, many of those with autism are considered "special needs" which require a great amount of extra care (and patience) for their entire lives.

I've worked with autistic teens and have an autistic cousin. What is your experience with autism, I wonder?
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Mike Masnick (profile), 25 May 2010 @ 3:28pm

Re: Re: Re:
If you are going to present an attention grabbing headline suggesting something nefarious is going on, then at the very least you should present something factual beyond the contents of a newspaper article so general in nature as to convey no useful information.

I presented the evidence in fairly great detail. If you think it's wrong, you present the counter evidence. That you have not done so, but have now twice (in this thread, though you do this regularly in other threads) insisted that the whole story is not being told with no evidence AT ALL to back it up, I can only conclude that, as per usual, you have nothing to add.

At the very least, you used to add factually relevant points to the conversation. I guess once we started proving you wrong, and you stopped using your name, or mentioning your history as a patent lawyer, you've decided to cast bogus aspersions on people who want to have a serious discussion about these topics. How sad.
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Rose M. Welch (profile), 25 May 2010 @ 3:53pm

Re:
Even mild autism can be devastating.
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Undisclosed Wimp, 25 May 2010 @ 3:57pm

Re: Re:
I agree. Under the current system, we blindly believe that all parts involved will act in good faith and will play nice. In reality, the system is open to abuse and people will gladly abuse it.

The system is the problem. Either improve the system to a point where abuse is no longer possible, or remove the system entirely.
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Anonymous Coward, 25 May 2010 @ 4:56pm

Re: Re: Re: Re:
The only "evidence" provided is a link to a newspaper article.

If you searched for Dr. Schwartz's CV you would find all sorts of information about his professional history, including his various ongoing research projects (apparently not all research has stopped) and their source of funding (mostly federal, some state, and some private). This is interesting, but it sheds not a whit of light on the matter at hand.

If you searched for Dr. Weissman's CV you would find similar information, none of which sheds any light as well.

If you searched StemCells website you would find a table of its various patents, licensors, research affiliates, etc., none of which likewise shed any light on the matter.

When all is said and done all that you have is a newspaper article, one doctor apparently making a generic statement that research has been "shut down" without any particular insight as to why other than the word "patent" being used in a casual and uninformative manner, some suggestion that the two parties have had some discussions, but with no elaboration as to what these involve, etc., etc.

The bottom line is that once more a "moral panic" is being presented without any substantiation. Maybe there is a real problem because of a patent. Who knows? All I know is that there is nothing presented that helps me understand what is really going on.
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Mike Masnick (profile), 25 May 2010 @ 5:03pm

Re: Re: Re: Re: Re:
Wait, are you honestly suggesting that Dr. Schwartz is lying? I mean, you've stooped to some ridiculous claims in the past (such as claiming that it's more moral for everyone to be worse off), but that's a pretty ridiculous claim.

Step up. Do you have ANY PROOF whatsoever that Dr. Schwartz is lying or that the article in question is inaccurate?

Or will you admit that you have no proof at all.
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Anonymous Coward, 25 May 2010 @ 5:31pm

Re: Re: Re: Re:
"But I guess you probably don't think Dr. Schwartz knows what he's talking about either do you?"

Only the lawyers know anything and if the lawyers say that patents aren't hindering innovation then the lawyers are right. The scientists? Who cares what they think.
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Anonymous Coward, 25 May 2010 @ 5:31pm

Re: Re: Re: Re: Re: Re:
Never having even insinuated that anyone is "lying", it does seem a bit disingenuous to express moral indignation and demand "proof".

As for the article, the comment was that no meaningful information was contained within its metes and bounds that sheds light on what is actually going on. This has nothing to do with accuracy or inaccuracy. It has everything to do with completeness.
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Anonymous Coward, 25 May 2010 @ 5:33pm

Re: Re: Re: Re: Re: Re:
TAM is psychic, his psychic powers are proof enough.
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Anonymous Coward, 25 May 2010 @ 5:39pm

Re: Re: Re: Re: Re: Re: Re:
"Never having even insinuated that anyone is "lying", it does seem a bit disingenuous to express moral indignation and demand "proof"."

So if you come up with the hypothesis that magic elephants make the world go round it's disingenuous for me to demand proof? Wow, great logic there.

"As for the article, the comment was that no meaningful information was contained within its metes and bounds that sheds light on what is actually going on. This has nothing to do with accuracy or inaccuracy. It has everything to do with completeness."

Please explain, using logic and reasoning, why this is true.
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Mike Masnick (profile), 25 May 2010 @ 5:55pm

Re: Re: Re: Re: Re: Re: Re:
Never having even insinuated that anyone is "lying", it does seem a bit disingenuous to express moral indignation and demand "proof".

You most certainly did. You insist that his claims are false and demand proof that his straightforward statements were not lies. When we point to his actual quotes, you claim that's good enough. To anyone it seems clear you are claiming that he is lying unless we can provide additional proof.

You have a very odd sense of "burden of proof." Normally, the way it works, is someone presents the evidence -- i.e., the detailed statements within the article, and then you refute them.

Yet, in your world, it's apparently, the evidence is presented, and a patent lawyer such as yourself gets to say "nope, I don't buy it" and demand that people reprove it to you to your satisfaction.

How about stepping up and presenting a single shred of evidence that the article is not accurate, as I have now asked multiple times in the thread.

If you do not do so, I will conclude, once again, that the article is, in fact, accurate.
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Anonymous Coward, 25 May 2010 @ 6:13pm

Re: Re: Re: Re: Re: Re: Re: Re:
"If you do not do so, I will conclude, once again, that the article is, in fact, accurate."

You would REASONABLY conclude such and such.
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Anonymous Coward, 25 May 2010 @ 7:49pm

Re: Re:
Note: I am not the person who orriginally said that calling autism a "devastating condition" was offensive and a broad generalization. I just happen to agree with him, to a point.

I AM autistic, I also have a couple of friends who are autistic. Since I'm including my own experiences I grew up in the US; other countries may be different.

The first problem is that -- and this is especially true at the higher functioning levels such as Asperger's syndrome -- as autism is mostly defined by a set of characteristics it is a VERY broad spectrum that doesn't necessarily mean that they can't function in normal life. While it is hard for the more strongly austic and those who need to take care of them -- especially for the non-verbal -- the damage caused by the stigma and way we treat autistic people is tremendous and I'd argue that it is more damaging to the individual than having the disorder int he first place.

In middle school I was placed in the special education classes, and was the kid that people laughed at for riding the short bus but I was in no way stupid. The special ed classes did a world of damage to me as a student; we were taught at a slower pace, our time was wasted with simple things like having to make collages and paper mache constructs and took turns reading books well below grade level. I was capable of much more, but because I was labeled as special needs -- namely that I did not interact with other peers very well -- my educational growth was stunted and worse, I was treated differently I was told that I couldn't do more difficult stuff not because I wasn't able but because I was labeled as a retard and treated like I was stupid. You have no idea how much school for me sucked at the time; people treated me like I was a complete idiot and had the same mental capability as the worst student in class. All because of a label.

When I finally got into college I refused to let people know that I was autistic and was treated like I was normal. I received no special treatment and became on honor student and graduated from a two-year school. A year later I almost have my BS, am considered one of, if not the, brightest students in class (I am regularly asked why I'm not taking the higher level subjects in classes that I actually never took before) and am being encouraged to go on not only to get my MS but a PhD as well.

People are made to rise up to a challenge, while some have more ability in other -- and this is especially true with autism because they are made to be specialists, just because they have a terrible grasp of one are doesn't mean they can't be genius level at another -- the fact that as soon as someone receives a label everyone goes "oh no, what a tragedy" and essentially stop trying while they hope for a "cure" for this "devastating condition". When the truth is really that they -- and I'm speaking in the generic here, so the whole spectrum -- might just learn differently and excel in other areas; yet we don't even TRY. We don't try to challenge them, we segregate them from the rest of the population and give them busy work.

Please take a moment to watch this TED talk by Temple Grandin. Ms. Grandin is autistic but also a national bestselling author, a professor at Colorado State University, and holds a PhD in animal science as well as a masters in animal science and a bachelors in psychology. She advocates for neurodiversity and talks about the importance of having people who think differently and truly take advantage of their capabilities. http://www.ted.com/talks/lang/eng/temple_grandin_the_world_needs_all_kinds_of_minds.html
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Anonymous Coward, 25 May 2010 @ 8:15pm

Re: Re:
Nothing could be further from the truth. If mild autism is so devastating it is only because we as a society pre-judge what an autistic is capable of and don't challenge them. Instead we treat them special and tell them they are incapable of doing things. The truth is that many famous people in our history have been shown or speculated to be somewhere on the autism spectrum; people like Thomas Jefferson, Nikola Tesla, Alan Turing (a pioneer in computer science who every still read's his work), Mozart, and Albert Einstein. The truth is we have many people today who have received recognition in their respective fields that have autism. There is nothing to say that most, if not all, of the other people today on the autism spectrum could become as great if they only find their niche; yet we don't try. We say "oh no, he's autistic" and sadly shake our heads then dump them in the school equivalent of a day-care program to make sure they don't "disrupt" a class full of "normal people"
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TtfnJohn (profile), 26 May 2010 @ 9:43am

Re: Re: Re: Re: Re: Re: Re: Re:
You're in deep do-do now. You mentioned magic elephants and I'll have you know that TAM has patents on the entire range of known magic elephants, trademarks and all IP associated with them not to mention a copyright on the phrase.

Pay up now!!
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Anonymous Coward, 26 May 2010 @ 11:41am

Re: Re: Re: Re: Re: Re: Re: Re:
You most certainly did. You insist that his claims are false...

I do not believe I have done any such thing, though you are free to point out quotes from my comments supporting your assertion. If I was not clear, I will be glad to clarify so that my point is more appropriately stated. It is not my intent to "muddy the waters". It is simply to try and understand what is really going on, and the article from the SJMN does nothing to provide me truly meaningful insight.
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Nastybutler77 (profile), 26 May 2010 @ 12:12pm

Re: Re: Re: Re: Re:
I'm assuming that comment is from a different AC than the TAM AC I was responding to, and will therefore further assume you are being sarcastic. If it is TAM that replied, and you're not being sarcastic, then for your own good I should point out you're an idiot.
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Nastybutler77 (profile), 26 May 2010 @ 12:17pm

Re: Re: Re:
I do realize a great deal of those with mild autism lead perfectly well adjusted lives, but that doesn't preclude autism from being a devastating condition. Just like mild gout is not a hinderance to a normal life, yet it can still be a devastating condition. Not that autism and gout are in any way similar, just using that as an example of a condition with a wide range of severity.
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Anonymous Coward, 26 May 2010 @ 1:48pm

Re: Re: Re: Re:
hhhmm... perhaps we have different standards on what qualifies for "devastating". I personally think that gout, in a first world country, is not a devastating condition because we can manage and treat it to reduce the symptoms to almost nothing, it is also not life threatening. For me, devastating conditions would include those that have no treatment and can "devastate" one's life*. Under that assumption, AIDs (no cure, ends in death), loss of limb (though I think in a decade or two this will no longer qualify), and other such afflictions would qualify but pneumonia would not. I would then argue that under my definition a severe (non-verbal and ranges close to it) form of autism would count as devastating for the parents; I'm not sure if it qualifies for the child itself however. But I don't think the a high-functioning autistic qualifies for either unless you want to say that having a child who sucks at math, or who can't draw is devastating.

At the high-functioning levels of autism, it is a big case of trade-offs but I think that the problems occurs when society starts making assumptions on what a person can do. An autistic -- depending on what their specialty is -- may not be able to understand algebra until much later than "regular" people** but that doesn't mean they don't understand other subjects like geometry. Again, with the right motivation they might have the ability to become experts in the field that best fits them.

I think the biggest problem that I have with the "devastating condition" talk is that it leads not to finding what they are good at and helping them learn to fake the rest of stuff*** and become self-sufficient but instead to segregate the majority of them away from the rest of society. Notice how I keep saying "them" this is because I receive a lot of stigma in reality if I mention that I am autistic; if people don't know it then they think I'm incredibly smart if a bit weird at times (when I forget some part of my script or encounter a situation where I don't have a script usually) but if they know I am autistic before they get to know me then I get prejudged heavily. The best way I can explain the treatment is the way that adults rarely *really* listen to what children say or ever take them seriously.

Seriously think for a moment what it would be like if you take a 10 year old to work or school, whichever you do right now, and think how people would treat him/her if they were to try and act like everyone else at the school or work place including trying to solve problems given to them. That's pretty close to how I feel like I am treated when people who don't know me know that I am autistic. Regardless of any merits I have, I am prejudged. Except unlike that kid, there is nothing outwardly visible to base that judgment on and much like that kid, I might actually be able to do everything I say. I might have something strong to contribute, but I'm not always even given the chance if people know that I'm autistic.

*for clarity's sake, I am relying on the third definition on wiktionary for "devastate" that says "Break beyond recovery or repair so that the only options are abandonment or the clearing away of useless remains (if any) and starting over"

**depending how strongly autistic they are, they may never truly grok it, but instead understand a rule-set to apply which I'd argue is also true of many "normal" people based on my own interactions with the amount of people who hate math and don't "get" it

***for example social interaction for me is very much like acting in a play, I act certain ways because I know that is what is expected, it is a very very conscious thing for me, there are few people I can be around and not feel like I have to act
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Frank Hirsch, 28 May 2010 @ 2:18am

It's getting high time to end this farce and ax the frickin' patent system!
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Anonymous Coward, 16 Jun 2010 @ 1:31pm

Well, they settled. StemsCells granted a noncommercial license. Basically, StemsCells did not want the doctor to resell the technology without getting a cut. So the doctor agrees because he was not in it for the profit in the first place. Who got hurt? No one.

http://www.mercurynews.com/ci_15303405
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