Slashdot Mirror
British Columbia Bows To Breast Cancer Patent
dlek writes "Bowing to pressure from Utah's Myriad Genetics, the government of British Columbia has stopped offering a test for hereditary breast cancer. The price of the test, which looks at two genes responsible for the cancer, has tripled to $3500US. Our public health care system can't afford to pay so we're sending people to Ontario, which is ignoring the patent. People are disappointed we're not doing the same... previous Slashdot mentions are on their original claim and on the Curie Institute's challenge to the patent."
Canada's pinko health system (which I refuse to live without) colliding with our grasping new capitalism (which I also refuse to live without - although I'm embarrassed by it...)
It's Christmas everyday with BitTorrent.
Am I reading this right? Socialized healthcare means everybody gets treated/mistreated equally bad?
Thank Bog that patents are promoting progress!
Sheesh, evil *and* a jerk. -- Jade
You jackass. Since we started realizing how stupid patenting genes was. Read the friggin' article. Quote, "This is just the tip of the iceberg."
Wouldn't the fact that women's cells have been duplicating those genes for thousands of years count as previous art?
Aparently not...
So what they patent the gene, I'm not copying it, or even using it (by choice), I'm just checking to see if it is there.
Since when is it a violation of a patent to see if the patented "invention" is located in a certain area?
Now if the patent is for a specific test to check for that gene, as opposed to the gene itself, that would make sense, but the articles seam not to point it that way.
I hope my government wises up and just disallows the patenting of preexisting 'inventions'
If this were testicular cancer screening, it would be covered...
Denver Isuzu Suzuki
I wrote Larry Combest a few months ago complaining about the whole Berman thing. The form letter he sent back went on and on about how important intellectual property such as copyrighted media, trademarks, and PATENTS are to the economy, business, and corporate health of the nation.
Okay, Larry, Here's a real good example of how patents are HURTING health for our beer-loving neighbors to the north.
Yeah, we'll pay to bail out a company that's committed felonies, but we won't pay extra so that some poor woman can have protect her healthy by having breast-cancer screeings. Fuckwits.
The next Slashdot story will be ready soon, but subscribers can beat the rush and slashdot the links early!
This is the kind of issue that cries for a flamatory public debate.
On one side, the right to cure and get cured at a reasonable cost or, even, any expense.
On the other, right right to maintain a certain cash flow from products who carry a usually very expensive R&D cycle.
Patents on medical products are a touchy subject.
I think the pharmaceutical world needs a new kind of patent protection system. Something that allows any company, by law, to produce the covered material by a patent, but forcing them to return some royalties for the duration of the patent.
In other words, legally allow copying of patented products but enforcing a royalty payment to the inventor of the product.
This way, big research companies can be assured that their investments are covered, and patients are assured they'd get access to the care they require.
I never much liked the need for the idea of intellectual property (although I'm hard-pressed to come up with an alternate system that'll work as well on the whole), but somehow when we're talking about lives rather than Napster and hearing the same exact story from the people who 'own' the IP (we just wouldn't have the incentive to produce if we don't have total control) it makes the whole idea sound pretty dumb.
Try not. Do or do not, there is no try.
-- Dr. Spock, stardate 2822-3.
Your right... except for those nerds whose mothers or wives are affected by breast cancer. Maybe you don't have either.
What's the legality of this? According to the other article, there's a European patent on this procedure as well, so none of those "the queen of England runs Canada" cop outs :)
While I agree that the price of medical care is obscene, I think as nerds, we also know the immense cost in developing medical systems. Not to mention liability issues surrounding providing said product.
So my question is, is this totally a patent issue? We see the statement that this particular health can't afford such services.
Instead, is this problem a little bit of both. A jacked-up patent royalties to recoup R&D, and a brand of health care system stressed because of its communal nature?
--- have you healed your church website?
From one perspective, this test wasn't available a few years ago. A company spent the money and time to make it available, and now they want a return on their investment. If it was a new method of toasting bread, we wouldn't care...
but it's breast cancer detection/prevention so it's not "business" anymore. The question is: where is (or can there be) a happy balance between the pharmaceuticals screwing us, and us screwing them?
-... ---
Nice to know that your life means absolutely nothing to the economy, business, and corporate health of the nation.
If everyone had to take even one day off all at once for cancer treatments, IP would count for shit. Why can't these people see this?
You think that I'm crazy, you should see this guy!
How do you do that? If you patent a product then no one is allowed to copy it. But since my body might produce this gene what happens?
"Well I'm afraid that you've got the gene, but what's worse is that a US company is suing you for infringement."
Summation 2
Next, Myriad will go into DRM by patenting eyeballs, and requiring Palladium chips installed into each one.
Always going forward, 'cause we can't find reverse.
(That was sarcasm, in case you mods out there were even thinking about modding this as flamebait.)
Slightly related news? I turned on Bloomberg this AM and found the president discussing generic prescription drugs and how the drug companies are abusing the stay process in order to maintain a hold on the drug going generic. If he's starting to look at the generic-ization of meds, perhaps it's the tip of the iceberg for things such as this.
Disclaimer: I'm a right-winger, but dunno about this idea.. after all drug companies do take finantial risks to make new medications. But holding potential benefits for people's health over their head in the name of pure profit bothers me. Like the Microsoft stuff, it possibly sets a bad precedent.. I hate m$' heavy-handed tactics but having the government step in seems a bad idea.
-fester
-'fester
I've been thinking twice now about donating money to HIV or breast cancer research. I think I've heard of many cases were people supported these programs but when the research was complete, a patent was assigned to the final product. The research that received our support is going to make someone billionaire. You guys are talking about Canada. Think about countries like India, Argentina, etc. These are countries that are in very bad shape. They can't afford paying the high cost of these treatments in US dollars. Is there any kind of law that prevents research programs that were supported by donations to patent their final program? Wouldn't it be considered unethical to say the least?
It would be nice to have a "special clause" added in the event of life saving techniques. For example, a person that may be labeled "high risk" would be able to have the testing done irregardless of the patent. However, if the population were to screened en masse, the patent would stand. I only agree with the patent issue so much as it furthers research and development, but it seems anything balanced against human life is a no brainer. Maybe the US is able to put a price tag on our lives, but I think other countries should ignore patents like this on the "right to life" platform.
Bill, can you factor this prime number for me?
So these guys pretend to be above God and/or Nature and pretend ownership of their Creation...
Interesting to see this thing coming from traditionally religious Utah... Is anyone tryng to create a new religion of The Chosen who can afford the Patented Creation that offers the Misteries of Human Genes capable to prolong Patented Life and improve Patented Health just for a miserable sacrifice of a few thousands? While The Patented Infidels will be forced to avoid touching their Patented Ills so they can meet their Patented Destiny, as they don't have a penny to pay the humble sacrifice, that is the wish of being humans?
"What we're seeing now is the tip of the iceberg," she said.
I never heard them called icebergs before... Is British Columbia really cold?
From excellent karma to terible karma with a single +5 funny post...
cancer.
Fair is fair. They want the profits from testing for the gene, they should pay the costs if the gene ends up causing cancer in a patient.
What is really outrageous is that these jerks learned about the gene and how to test for it using PUBLIC tax monies, then they split into 'private' industry, file patents and start gouging - exploiting. This couldn't happen if some congressional pockets weren't being lined in the first place.
Running with Linux for over 20 years!
The new issue of Wired actually has a great article about genetic testing. I think it's a great & wonderful way for people to be healthy, on the other hand, they're also discussing about how the future of it will be... genetic profiling & genetic discrimination. Good read. If you read slashdot, and you aren't subscribed to wired, I believe you suffer from a mutation of the INFORMED PERSON gene.
Hopefully someone will get around to suing because the "patent" is killing them.
So folk get all wound up about a US company exercising a patent right in a developed country that can afford to pay. This has been going on in Third world for twenty years with very little comment until the cost of AIDs drugs hit the news.
It is not just the people who will die because the western drug companies refuse to sell drugs at affordable prices. There is no guarantee that epidemics (AIDS is now a pandemic) will stay there and not cross to the developed world. Perhaps that is the drug co executives plan, Enron style to keep the diseases going so they can sell the drugs.
Of course the US is not above hypocrisy here. During the Anthrax scare Sen. Biden craftily proposed that the US seize the patent rights to cipro and mandate the production of generics. Congress quickly agreed. I have no doubt that Biden knew about the controversy over AIDS drugs and used the anthrax scare to deliberately cut the legs out from under the drug companies claims just before a crucial conference.
Looking for an Information Security student project suggestion?
Try http://dotcrimeManifesto.com/
Sorry, Myriad Genetics, and any other clown who thinks they own the patent to the design of my body. Just because you reverse engineered a few portions of that design does not mean that you now control whether I can look at it or not. I think some massive civil disobedience on this whole patent issue and so called IP is in order until we get some politicions in place who can fix the present corrupt system.
Might I add....
:) )
mmmmmmmmmm. Beer.
-Anonymous Canadian(so not really *that* anonymous
You can view it here.
It sounds like it patents both a method and a gene... but being that I no nothing about modern genetics, I can even being to analyze if the more important part of the patents is a novel method, or just a bunch of chemical sequences (which are listed).
_sig_ is away
Excellent. Yes, intellectual property is bad. Shouldn't we be killing anybody who is involved in this case? Actually, anybody who wants to reduce copyright or patent terms should be killed as well, as they need to be abolished, not reduced. Not like we're running out of people in the world.
This is the way capitalism works, and it does work. Without the INCENTIVE of profit from research, what company would even bother trying to make such advancements? It's funny that all of this advancement is moving at break-neck speed here in the US which is only ~220 years old, but happens to have a free market...
For advocating intellectual property laws. Yeah, there's the first amendment, but you gotta make some exceptions to morons who show such lack of intelligence that they would think of intellectual property laws. Improve the gene pool. We need a new inquisiton.
I like your basic idea, but it seems to me that what the pharma companies and the govt see as a reasonable rate of return will be two very different numbers. The pharma companies will say that they need to generate lots of income, so that their shareholders can make out like bandits, like Pfizer's did (I mean financially of course).
The government will say no, you should make a return related to your cost of capital. Then the companies will inflate the cost of development of their drugs, or will throw in all their R&D from failed/rejected drugs (like Hollywood studios tend to throw all their costs into the budgets of successful films, so that a percentage of the net is equal to zero). In general , it will all be a regulatory nightmare, which could make tax-financed healthcare for poor people seem positively libertarian.
The other thing to bear in mind is that the drug companies benefit a lot from government sponsored research, often not in the countries where they pay their taxes. Again, this is hard to quantify, but unless the companies are really willing to show all the numbers for their costs, in an honest way, then there's no harm in using this as an argument against firms that whine about how they need to cover their costs.
Remove patents and see how many companies spend millions on R&D.
> Fuckwits.
Exactly.
http://www.cancerresearchuk.org/breastcancer/
The activists are unable to understand the irony of their activism.
How about a compromise? Any researcher finding a mechanism of disease inherent within a genetic sequence can patent the sequence and receive no more than $100 per test for the diseased genes.
Or, if that amount is too low for some of the more esoteric diseases (which will not be often tested), how about a sliding scale?
We should have some legislative mechanism in place to reduce the maximum payout per test as the number of tests performed rises.
It is absolutely unreasonable to grant an exclusive patent on my genetic function (and I assume that men carry this gene sequence as well, even if it is inactive) without my personal consent. If the drug companies refuse to compromise on this issue, then they should expect wholesale disregard for their patents, as is proving to be the case.
Does anyone else see something wrong with patening anything that could save people's lives and then jack the price of it up to over $3,000? WTF is up? What has society sunk to?
If patents were not enforcable, this diagnostic tool and many, many other medical treatments would not exist. In a few short years the pattents will expire and society will have free access to the methods the describe.
One can patent an invention, such as a method of detecting a disease, but one cannot patent a discorvery, such as the function of a gene or an island, planet or anything such.
Thus is the mentioned patent a load of crap and can happily be ignored! (IMHO)
It certainly isn't free, I'm in a ~40% tax bracket.
... that is an asinine reason to perpetuate the existing, severely broken system which is clearly designed to serve the few and priveleged, subsidized by higher costs for the rest of us.
I'm in a 40% tax bracket in the United States, and my employer pays for my health care insurance, which isn't nearly as good as what I had in Germany when I was working as a college intern (the money my employer pays for health insurance would likely be mine as income otherwise, so it wouldn't be at all unfair to add that to my tax bracket for a more even ocmparison, in which case the United States taxes would come out vastly more expensive than most, if not all, of the industrialized world. We pay three times what the rest of the world does for comparable healthcare).
If you look at tax rates based upon what you earn, Germany (and likely Canada, though I haven't compared the numbers myself for Canada yet) has about the same tax rate as the United States for anyone earning wages in the middle to upper-middle income brackets. Yes, if you make $500,000 or $1,000,000 / year you'll pay much higher taxes in Germany (and probably Canada) than you do in the US, but how many people does that affect, and just how impoverished are the lifestyles of those so affected. Not as impoverished as the upper middle income bracket folks, who pay roughly the same in both countries, but get a hell of a lot more for their tax dollar in Germany than they do the United States. Woopty-fucking-do if Joe Corporate Exec can't afford a second yacht this year
What is amazing to me is how utterly myopic we Americans are when it comes to socialized medicine. The insurance and pharmaceutical companies tell us how poorly socialized medicine works, citing one or two anectdotes (for which there are a dozen anectdotes making exactly the opposite point), but no hard evidence that socialized medicine a la Europe (including Germany's highly regulated medical insurance industry, the system Hilary Clinton wanted to emulate), and we as a people buy it hook, line, and sinker merely because anything having the dirty word "socialism" in it must be worse than the current 40% uninsured population we have now.
Not all that goes to health care, of course, but a good chunk does. Do I dislike the taxes? Yes. Would I want to lower taxes and go to a for-profit US-style system? Not on your life.
Amen. The irony is, I doubt your taxes are all that much higher than ours, if at all. We get to pay taxes to prop up Worldcom, line the pockets of Baby Bush and his cronies, and invade small middle-eastern countries at the behest of our oil moghuls instead. And we're told we should be 'proud' to be Americans. Feh.
The Future of Human Evolution: Autonomy
why dont they just patent breast cancer and milk them for all they are worth.
I don't see how ANYONE can patent a gene, they are basically making it illegal to get some of MY OWN BLOOD and study it. This is completely ludicrus. The patent system has gone too far. I live in Canada (Ontario to be exact), and the main reason our health care system is struggling so much (IMO) is because people are IDIOTS. People do stupid stuff to get hurt, then wind up in the emergency room, have an operation that costs the taxpayers $200000 then they do it again. Whoever thought that it would be a good idea to waterski on a skateboard behind a car, or (after any major snowstorm) the 4 or so people who take thier hand of in a snowblower. If people weren't idiots things like this breast cancer patent wouldn't be such a big deal.
History will be kind to me, for I intend to write it - Sir Winston Churchill
They also hold patents on prostate cancer-causing genes.
Further proof that men just don't complain as much as women.
QED.
--- What
Alright you are a biotech company. You are thinking of a big layout for an inheritable form of breast cancer...
CLIENT: What can I patent if I spend $200 million dollars?
ATTY: You can only patent your exact test. Anybody who departs from that test one iota gets to use all the fruits of your research for free.
CLIENT: Ok, shitcan that project. Let's think of another.
Oh, yeah, and nobody gets the test at ANY price. I wish at least 1 in 100 postings would think of the pathological scenario of the work never being done, or being done 30 years from now when the darn patent would have been expired for at least 10.
Some things are not covered, like optional surgey, medications, and some quality-of-life coverage.
Why do countries insist on keeping medical policies created on 19th century thinking (Cut 'em or Zap 'em)? I am in favor of government coverage for health care, but I so want it to be reasonable and modern.
So many national healthcare systems, including the US, do not cover medications and I can't understand it. Yes, medications do not necessarily cure the disease, but surgery doesn't always to that as well. But medications are usually much less expensive that the hospital stays they often can reduce or prevent.
Just to be contrary, I also belived in capitalism, so I am against mandatory caps or government declared pricing on anything. My solution is to have the government decide what is the minimally acceptable healthcare for their citizens. Then they should bid it out to the insurance industry, which has shown and has to show it's ability to manage the insurance cost effectively, selecting several companies if not all of them. The government would then provide vouchers for different amounts base on your income, lower incomes can get the basic insurance for free, but don't lose it when their incomes increase. The insurance companies would be able to compete by adding, for an additional cost, additional coverage on top of the government miniamal insurance. Companies should get an incentive to keep their private insurance coverage for their employees.
OK, it's not fully fleshed out, but since government probably doesn't read /., other than the FBI/CIA/NSA, I guess I won't have to....
P.S. these are my personal opinions and do not reflect the interests of my employer or my government.
I don't see things in black and white; I see the gray. Heck, I actually see in color, which makes things more difficult
Or never alter them and assume its the best way. Equally moronic and myopic view.
What frusterates me is that the *most* amount of groundwork for drug research is done by universities. Pharmaceutical companies fund the commercialization and last mile research.
But yeah, I guess we'd be without viagra and zoloft without the generous, risky investments pharmaceutical companies do into research.
Seriously, the private sector is so full of itself, it frequently forgets where the real research comes from before its obvious that said research will turn into a mad phat money cow. Any industry which can be found guilty of price-fixing over and over and over again doesn't sound to me like an industry which needs (or for that matter, deserves) Fort-Knox like protection of its intellectual assets.
"Old man yells at systemd"
This company has already caused trouble for other researchers within the US. For those who would suggest that if there were no profit incentive this "innovation" of discovering a gene wouldn't have happened I suggest you read this MSNBC article, which contains the following two paragraphs:
In Philadelphia, a university stopped testing 700 women a year for a genetic predisposition to breast cancer because its lab was accused of violating a biotechnology company's patents.
"I'm quite disgusted," said Arupa Ganguly at the University of Pennsylvania, who abandoned years of breast cancer research after Myriad Genetics Inc. warned her in 1999 that she was trespassing on the company's intellectual property. "My work went down the drain."
The fact is that this company just got to a position 1 or 2 years before University researchers would have. While there still may have been a patent put on this information by the University somehow I doubt you would have to pay extortionist fees to do anything related with those genes even if it's just further research by universities.
Americans have already been suffering because of this insane idea that a gene that occurs within every human can become the sole property of a single for profit company. It falls within the government's responsibility to prevent this situation from happening but for that to occur you need a government that is "for the people" not for corporate profits.
This comment was generated by a Squadron of Ultra Ninjas
Since this patent is about method of detection, surely we could digitize the data and then perform a simple diff on the genes? 'diff' being a few decades old unix tool is definetly too old for a patent and genes can not be patented (only their method of detection), therefore this method of detection would surely be patent free?
If I am missing something in my utopic vision, could someone please point it out to me?
Jumpstart the tartan drive.
I will now patent the biochemical process that causes thought. You all owe me $20,000,000.00. And if you stop to think about THAT, it goes to $40,000,000.00
The probability of a slashbot ever actually seeing a breast is zero.
No developed country in the world spends 30% GDP on health care or anything like that on any budgetary item. Government, provincial and national Canadian spending on health is somewhere like 6%.
30% GDP on an item is enough to wreck any economy. Ask the Soviets...
Oh and England (which is actually called the United Kingdom and consists of Scotland, Wales, Northern Ireland and England) has a National Health Service. It may not be Canadian but its still pretty good. And if you have a modicum of money, you don't have to go to the US to get private care, you go to Harley Street.
To be honest, check your facts before you comment.
Apparently prostate cancer in men is about as likely to kill as breast cancer in women. Yet it only receives one quarter of US Federal funding for research.
I don't want to think about the difference in private sector donations.
I might say things here that some will take as Flamebait, but I don't care.
I'd care a whole lot more about the Third-World vs. Drug Patents issue if a couple things were being done.
1. The countries bitching about the AIDS drugs actually worked to combat HIV, some of them don't think HIV causes AIDS, thus they don't try and combat the issues that are leading to the spread of HIV.
2. There is nothing in the US Constitution, Bible, Koran or Book of Scientology that says BMS, Pifzer, Bayer, or Wal-mat have to sell drugs at a price that is affordable in (Insert Country) just because thier government has crappy money policy.
Finally, the Anthrax issue and HIV/AIDS patents are two different things. Lets say there was an Anthrax attack on the US, in that case antibiotics like Cipro become a Strategic Drug. When it looked like Bayer was holding back on production to get the price up in fall of 2001, Congress acted because of that possible immediate requirement. How can one compare the possible need of 100,00-10,000,000 doses of a drug that is produced in Europe and must be had ASAP to a drug that is much less time sensitive? What happens if something happened to Bayer's production facilities? What if something happened to the transports bringing it in?
AIDS in the Third World was a completely controlable issue, but now it's out of the Box and still some Governments refuse to treat it like it should be treated, yet they want to unleash cheap AIDS drugs. Why produce HIV/AIDS drugs and hand them out when the government states publicly that HIV doesn't cause AIDS? To me it sounds like a Patent grab attempt, but a nation like Zimbabwe would never attempt a grab for the good of the ruling party would they?
While you may have a point if this was an actual treatement being asked for but the case this time is just a simple herdiary test. I'm unclear how the rights of Myriad Genetics is being infringed or stolen from by inspecting genetic material found in every one.
So while Bald Guy Genetics may hold the patent for the gene that causes male pattern baldness do they have the right to stop someone from inspecting themselves to find out? Better break the mirrors then even if you aren't going bald. Just a simple inspection of your head of hair can test to see if you have their "patented" gene.
Charge out the wazoo for medicine. Testing is another matter.
If any significant fraction [of research leading to a new and useful invention] was funded by grants, then the patent is "corporate welfare" in its most evil form.
Pharma companies that buy the exclusive rights to research generally pay back federal research grants as part of the price of such exclusive rights. Thus, the "grants" are more like loans.
Will I retire or break 10K?
Yes, it is a patent issue. It's a good thing you didn't read the article before giving us all your opinion, that would have been a waste of time!
If you even would have read the SLASHDOT HEADLINE, the problem is NOT the cost. They successfully rolled their own test (and ran it for awhile) on the gene for 1/3 the price of the Myriad test. They are not sending their tests to Ontario because the cost is $3500 per test, but because they don't want to pay Myriad to support the patent, so they get a separate health care system (provincial health care systems are indeed separate) to test. Also, the patent restricts the medical community's ability to improve on the test, as Myriad still holds all of the cards involving the 2 genes. Thus, even though testing these 2 genes could be crucial in identifying hereditary breast cancer, Myriad could get by with a faulty test for the genes, while charging whatever they wanted (not necessarily what the market could bear). This is more about patent issue than anything.
Who is the Us defending Canada _from_ again?
Russia? Iceland? The resurgent Eskimo alliance?
I never thought this was possible. Because it's it kind of like saying "Hey, you see that duck over there? I just patented it, everytime you look at him or feed him crackers, you owe me 10 cents".
Could someone explain this to me? Cause I find it a little odd.
The test is about 3800 Canadian dollars. Ontario is still offering the test in direct opposition to the cease and desist letters from Myriad genetics. This patent is very wide ranging and does not allow others to perform any diagnostic test with it. Actually we all have the gene, but those who have an altered version that does not work properly (mutated) have an increased risk for breast and ovarian cancer. The issue is not with the cost of the test but the fact that Canadian laboratories have been testing for these genes for a number of years and are no longer allowed to do so by the patent. They leave themselves open for large lawsuits. this will be a litmus test to see how patent law will hold up to the higher levels of the legal system (Supreme court etc). there has also been much discussion of making new applications for gene patents more difficult so that the gene discoverer and society in general can both benefit. gordini
Reminds me of a joke.
A man an his wfie just hada gnasty argument about nothing and were starting to make up. "I'm sorry" he says. "No, I'm sorry", she says. "No really, I'm sorry - how can I make it up to you?". She says "well, if it'll make you feel better, just buy me something expensive that I dont' need." So, the next morning, he booked her for chemotherepy.
-Thomas;
___ This sig is in boldface to emphasize its importance!
It's 10 PM. Do you know if you're un-American?
> If patents were not enforcable, this diagnostic tool and many, many other medical treatments would not exist.
Baloney. Basic genetic research is carried out mostly using public funds.
There is no reason increased public funding covering the last mile, coupled with non-profit release of the information (to recoup the basic costs) couldn't do just as well in the last mile popularization of new treatments as it does in basic research.
Other than a fanatic belief that the holy free market is better than logic and reason, that is...
On the contrary. Who is going to develop new tests for hereditary diseases if the entire world can legitimately test for it without royalties? How will this encourage research? Money drives the world for a reason. Now I admit that $3500 to test for a certain gene is quite steep, but we do not know how much money was put-forth to determine the offending genes.
If anyone could test for these genes without paying royalties, then the guy who made the discovery will not have ANY incentive to do the same in the future! This applies to drug companies as well. Sure we pay steep prices for them, but an enourmous amount of money goes into their development.
Now on another note, the Canadian health system has much worse problems than this patent issue. If my mother/father died of cancer and I knew this test would determine my risk, I'd fork over the $3500. Hell, people pay more money for lasic surgery but bad eyesight will never kill you.
I'm one of the unlunky people born with the XYZ mutation, as a result my body checks for the mentioned gene several million times a day.
This is becoming a costly process, with the royalties I have to pay to conduct my own tests.
I have had the gene for 25 years, can I claim prior art?
thank God the internet isn't a human right.
Okay, Larry, Here's a real good example of how patents are HURTING health for our beer-loving neighbors to the north.
No. Here's a real good example of how the utterly stinking monumentally idiotic incompetence of the USPTO (in granting a patent for something that's not an invention) is hurting the health of our neighbors to the north (and what makes you think it won't hurt people right here in the US?).
Downmodding is the refuge of the weak. Don't downmod, make a better argument!
What blows me away about the defenders of this patent is that they seem to believe a company should be able to recoup their costs in any way possible, including expropriating ownership of a person's genetic code without his/her knowledge or consent. Myriad effectively owns a pair of genes (and genes covered under 98 other patents) found in millions of people for the next couple of decades. You can't offer your own breast cancer genes for testing and research, because under a broken patent law, you don't own them. This is the entire reason this testing has to be stopped; Myriad apparently has the legal right to tell people whether they can even look for these genes or not. You don't control the right to use them and provide them to others as you see fit, so no dice giving your tissue for a university for cancer research.
To reiterate: it's not as if Myriad simply patented the testing itself. It patented a gene that is clearly not a unique configuration of matter (found in part of patent law as a way for companies to patent things like molecules), since it's obviously found in millions of people - otherwise, it would be useless as part of a test. They have claimed ownership over a part of millions of people; it may "only" be a gene or two, but this company is using their authority over it to block any kind of testing or research using it. Talk about stifling innovation... it's arguable that this company has effectively stolen a person's ownership over their own genes.
If a government claimed ownership of part of your genetic code and said you couldn't get a certain test without ponying up big money to Big Brother, I bet the people saying "but the company has to recoup their costs" would go into conniptions about a government cash-grab and Big Brother, rightfully.
Go ahead, tell me all about the millions pharmaceuticals pour into research, and how they simply must be compensated... fine. Patent a test. Patent a device used to find the gene. Don't put people into a situation where they discover they don't have control over their own bodies anymore, can't offer their own tissue for testing and research because they don't have the right to something they were born with. Profit is not a right that overrides all other rights, and it doesn't justify, what is effectively, theft of property rights from millions of people to one entity so it can make money.
Someday, you're going to die. Get over it.
Ok, now why isn't someone DOS'ing Myriad?
see these are the sort of corporations that need to learn the value of the dollar over the value of the person.
I'm surprised that so many people misunderstand genetic testing and the nature of Myriad's patent.
Have you *read* the patent? If not, shut up.
Any 3rd year biology student can test and "see if the gene is there". BTW, every human on the planet has the gene...
The trick is (and this is basically what is patented):
1) How to reliably isolate and test the gene. This is a patentable, chemical process.
2) Determine what a healthy 'wildtype' of the gene looks like.
3) Catalog and determine the effect of thousands of mutations and variants of the gene.
The last item is where all other institutions fall short. Where do they get this information? How do they determine if a patient of theirs has a mutation, and if so, is it a *dangerous* mutation?
One of the reasons Myriad is HQ'd in Utah is to have access to all the Mormon geneaological records; Myriad used these records to set up their initial database of information. Nobody else has the extensive records that Myriad has.
I agree, the Patent system is overly broad for genetic applications- it was never intended for this sort of thing. The real solution is to define a seperate category of patent for genes, genetic testing, et al.
Wired has an article on Patents and IP today at;
0 .html
http://www.wired.com/news/politics/0,1283,55831,0
One of the more interesting quotes
"Abraham Lincoln said that patents added the "fuel of interest to the fire of genius," by promoting the creation of new and useful inventions.
He didn't say that patent laws, or by extension intellectual property laws in general, were created to be cash cows solely for the gain of those with sufficient resources to play the system and intimidate any challengers into inaction."
>I knew this test would determine my risk, I'd fork over the $3500
Because you _have_ $3500, dumbass. If you were a millionaire, I'm sure you wouldn't have a problem plunking down 500$ for toothpaste every night too.
> Who is going to develop new tests for hereditary diseases if the entire world can legitimately test for it without royalties?
Said it before, say it again. Most of the groundwork for these discoveries are done using your and my public tax money at universities. Companies research the last mile when they sniff money, and then lock the 'exclusivity' of the test/drug down with a patent. Its a joke. Patents didn't exist years ago, and that didn't prevent humans from discovering new things.
The way people like you talk, scientists and inventors never existed before pay cheques. What a load of hooey.
"Old man yells at systemd"
In the modern world, that may be true. Back in the past, people actually did things for the benefit of mankind and science. Suckers!
Which elected official or organization should I contact to rant about this. This is the most terrifying use of a patent I have ever heard of.
Most of the groundwork for these discoveries are done using your and my public tax money at universities.
Govt grants are one thing. Universities on the other hand have every right to patent what they've funded. Provide me with proof that the majority of these patent applications come from public funds and I'll say you have an argument.
About patents not existing "years ago", that is inherently false. Patents have existed for over 400 years, throughout which the entire industrial revolution took place.
Even Galileo patented things
You go out and do R&D on a drug or gene test for some rampant disease, but you do it for free, on your own dollar and your own time. Then lets see what your argument is. I guarentee you'll demand a royalty for your life's work...
If someone makes a million bucks, its usually because they deserve it. This is of course excluding all the Enron corporate corruption issues that are plaguing the economy today. There's nothing better than a self made millionaire because they've produced something and given us all a job.
If prior art is found, and the patent is subsequently found to be invalid, could patients that didn't get treatment sue? If so who would they sue - the government or what?
Govt grants are one thing. Universities on the other hand have every right to patent what they've funded. Provide me with proof that the majority of these patent applications come from public funds and I'll say you have an argument.
No, he's right.
The company could be patenting drugs that make use of the knowledge as a treatment, without holding a patent on the actual gene. They could even try patenting a particular method of testing for the gene, but then an alternate testing wouldn't infringe. But, as the gene can be tested without manufacturing or offering for sale the patented "invention", I don't know how they exactly would even have an infringement suit. Maybe bio patents are under different laws, but I thought they were just an interpretation of existing patent law.
I'm glad Ontario is giving them the finger. This is just sick.
No, neglecting to get your bad eyesight corrected will not kill you. You may be able to show statistically that it encourages death, but that does not mean it killed you.
I say fuck all the bastard companies that risk the lives of people for a buck! That kind of thing should be illegal the world over.
Duh...the guy you replied to was making a really bad pun. Two, in fact. I'm sure he understood perfectly well what the poster meant.
One (such as myself) can criticize the *price* of the test, but it is not as though the test is not available. The problem seems to be the price, and that is the *same* problem that third world countries face with AIDS, malaria, cholera, you name it, test and prevention.
On a related note, one can question whether genes should be patented. But then again, one might want to look to such things as recombinant human growth hormone (hGH), erythropoeitin (EPO), tissue plasminogen activator (TPA), antibodies, and on and on and on, that have improved a huge number of lives. If these had not been patentable, there would have been sparse investment in Genentech, Amgen, Chiron, etc., and the products wouldn't have made it to market as early as they did (note: I didn't say that wouldn't make it to market eventually).
If a license to the patented technology is priced too high, noone will licence it and the patent holder gets nothing. If the royalty rate is *reasonable*, then everyone can be happy. If the patent license terms are too restrictive, then the patent validity gets challenged. It happens all the time, and is a matter of pure economics.
This is a very important issue, that we need solved. I mean, we aren't talking about hearts, or livers or something like that, but breasts! What guy doesn't love these!
> If someone makes a million bucks, its usually because they deserve it.
.. I'm not sure I understand why I inherently need to be able to charge royalties for my work.
..
/. artcle a few weeks back about how universities frequently patent their work so that companies can use them, but never the other way around?) But companies can take this research, tinker with it, spend a shitload of trials (ah yes, the Hit and Miss approach of drug trials ... *very* innovative!), and patent and market the trial winners. The shoulders of giants that companies stand on are the shoulders of public research.
Oh boy, theres the problem. Grab a psyche text book, look up "The Just World" syndrome.
You're assuming your system promotes and demotes people (based on wealth, I'm guessing you'd say) as they deserve it.
Problem being, kinda hard to know if the AIDS cure researcher deserves to be, say, twice as rich as the Cancer researcher.
In fact, all political or economical dissention would be useless if your charge that "People who deserve to be rich become rich, except for those who dont deserve it because they're corrupted." were true! We could always assume our system encourages the right kind of behaviour and rewards the right people/actions. Dangerous assumption.
> I guarentee you'll demand a royalty for your life's work...
I'd ask for a salary. But nobody forced me to do the work, so asking for a reward over the reward of actually doing it (and making some sort of living)
Mind you, yes, when you're investing millions of dollars, I need _assurance_ that those millions of dollars will be returned to my organzation in order to justify the capital I used to discover something.
Yet again though, we find outselves nearing an event horizon. Theres no 'absolute' minimum or maximum amount of capital that I should have access to, to develop these drugs. If I figure I can probably find the cure for cancer faster, with another half a billion dollars, but my investors won't invest unless I am assured royalties for 150 years (ie, need more patent protection to justify investment and improve ROI), should I be able to lobby congress for stronger protection just because *I* want to invest more money/time into research?
I hope you can see the slipperly slope here. You sound like you assume things are the way they are because thats the most sane and just way, but I can assure you that history makes a mockery of that stance time and time again. When you strengthen patents, you weaken the efforts of other scientists other than the Self, so you're not inherently helping discover a cure simply by virtue of working towards it with the knowledge that you'll get paid the mad money when you make your discovery. At some point, you demanding royalty for your work taints the very reasearch community your working in, and the market who may or may not be able to afford your drug when you market it. And what good is promoting discovery when nobody can make use of it? To bring back the psychology, people suffer when life-bettering technology is available but they are unable to afford it. I know it would depress the shit out of me, that I was some 2nd class citizen not deserving of the fruits of humankinds labour
> Provide me with proof that the majority of these patent applications come from public funds and I'll say you have an argument.
Oh, the patent applications come from companies. But X% of the research that leads to commercial produts are done by universities. (Did you miss that
Incidentally, I was aware patents have been around for centuries, but dont forget that technology has allowed the patent culture to be far more anal in terms of enforcability. Our very ability to adhere more closely to our perceived ideal systems is beginning to show the faults in those systems.
"Old man yells at systemd"
that investigates the occurance of said genes in the
BC population. It could be funded by the health services.
Patents cannot prevent research use.
They could also provide the patients with an opportunity to do the tests themselves. Although that is less feasible.
Patents cannot restrict private use.
***Quis custodiet ipsos custodes***
Yeah, it's not like any truly innovative discovery or method would result is being paid big lecture fees, possible Nobel Prize nominations, textbook royalties, or anything. Especially in the areas of deadly diseases, right? Yeah, of all the biology and med students I've met throughout college, none of them ever had the desire to cure/detect a disease that killed a best friend or family member -- they simply wanted to own new home in the burbs, with a 4-car garage and have a SUV in eash stall.
It's bloody greed (on a corporate level, more likely, than a personal scientist one), plain and simple. I was driving to work about a year ago and listening to NPR. One of the quick news blurbs was that some huge drug company's board had decided to can all further research on treatment for some really bad disease (multiple sclerosis, I think). Why? Because one of the patents on the process was about to expire!
"Mr. chairman, I vote we stop all research into this horrible, degenerative disease because we won't be able to recoup our costs. No, the fact that our Viagra clone and hair regeneration products will cover the costs tenfold -- we need to spend that money on TV commercials and free samples to physicians."
Method of processing duck feet
On a completely runrelated note, Myriad just completed constrution of its new 200,000 sq/ft palace^H^H^H^H office complex in the University of Utah Research park.
The Janitor^H^H^H^H^H A spokesperson for Myriad says that even though the entire complex was paid for with tidy suitcases of unmarked hundreds, that this has nothing to do with their Gene patents.
P.S.: Yes, Myriad did just complete their new complex, it's the corner of Wakara way and Collins Road near the Evans & Southerland R&D Facility.
Hilary Rosen's speech was about her love of money and her desire to roll around naked in a pile of money.
The fallacy of this argument is that people will only do something if they are going to get patent. It ignores the fact ALOT of developments do not come from corporations as copyrights, or patents as intent to make money.
Look at how many people are into music, and theater. Most will never make anywhere near a living doing it, yet somehow there are hundreds or thousands of entertainers out there. What about writers, there are tons of people who write and don't get published, there are alot that do also. Most of them don't make a decent living doing that either, yet they seem do it anyways.
Hell, like at Linus, he was not dreaming of the Big Payday when he started working on Linux, and he still is not a multi-millionare and probably will never get rich off his work contributed to Linux, yet he does it anyways.
The people who somehow believe that the world would stop turning because there is not some corporation not making a buck off it are the people are the least likely to contribute and the most likely to pigback on someone else's work. They don't understand why people do the things they do, which is just because they want too.
No, they are patenting the technique of looking for that gene for the sake of identifying a future cancer victim. The technique of isolating a particular gene is a totally different story. They are not patenting the gene, but rather the process of looking for that gene to determine risk. Its a process more than it is a physical thing.
Yes the royalty is excessive and somewhat sleazy (or appears to be), but we do not know how much money went into this guys research which is the fundamental issue here. He could be taking people for a ride, of course.
I don't think people understand that there is more to determining the genetic identifier for a disease than just simply saying its gene AGATTACAGAGATAGA.... The Human Genome Project simply puts biologists and chemists in the general neighborhood for identifiers. It does not by any means isolate diseases.
If there is no monetary incentive to do research of this type, it just won't get done. You can't compel people to become scientists or to work in a given field in free country, you have to entice them and that means with money. Then on top of that there is the masive materials cost for this kind of research. If we adopt a policy of just taking away patents whever it suits us, the research will just stop.
Now there are other ways, for example the research could be all government funded via tax dollars, with the condition that anything discovered was then public domain since the public had paid for its creation. This is along the lines of what I'd like to see.
However you can't just deny private companies the ability to make money from their expensive discoveries, or they will just quit doing it and get into another market.
Last time I checked, the majority of nobel prize winners were receiving their reward 20+ years after their work and at the ripe age of 70+.
And if you think that winning the nobel prize will cover the costs of all the biological research in the world, then you are an extremely clueless person.
The problem in the U.S. is the government poking it's nose into the healthcare system. The healthcare costs in the U.S. are more than 40% higher than they need to be because of the government taxation. (That is taxation of the Doctor's Offices and Hospitals mind you, nothing to do with your income tax). This especially applies in terms of Pharmaceuticals -- which ironically the "old folks" that we are worried about have to pay for to survive.
Canada's system is much better than England. That is because their proximity and relationship with the U.S. allows them to get technology and equipment from south of the border. But still in Canada, you are more likely to die while on the waiting list for a heart operation than you are on the operating table.
Not everyone in america is "myopic" to people like Hillary Clinton. She does NOT have the interests of the United States at heart. Neither did her husband Bill, who also pushed for socialized medicine.
Tell me about getting dental work in England. I mean, seriously people, just go down the list.
You are delusional if you think you can have health care without paying for it. You are either going to pay the government or you are going to pay the health care provider. If you pay the government, you can expect a big chunk of the cash to go to beuraucracy. Doesn't matter which government you are talking about. "Free beer" is an illusion in the health care industry.
#define FALSE 0
#define TRUE 1
if ( support_socialized_medicine() )
{
clueless_to_economic_consequences = TRUE;
}
Bottom line: If you think things are going to get better by getting the government more involved, you are deceived.
The Human Genome Project simply puts biologists and chemists in the general neighborhood for identifiers. It does not by any means isolate diseases.
Not only does it put them in the general neighborhood, but it gives them money to live and support their families while giving their time to research. It finances the research that these patents have built their foundations on. These corporations are just going the last yard and reaping all the money, at the public expense coming and going. That's the patent system at its worst.
No, they are patenting the technique of looking for that gene for the sake of identifying a future cancer victim.
That is as sleazy as it gets. Just as Congress prohibits patenting devices whose primary purpose is illegal, it should prohibit patenting applications that the public should have a right to, straight out of the gate. Or put in place a system of nationalizing / eminiment domaining patents in the public good, with fair compensation. And before you cry me an economic libertarian river, governments (and EL's) have no problem nationalizing the private property of the *poor* for things like new stadiums, they just balk at taking away things from people with money.
And I don't believe this would cause a stagnation of research, because the research is largely being done at the public expense, and corporations could still find ways to patent effective treatments (although if they are as greedy SOBs in that arena as they are in testing procedures, those could conceivably be ED'd as well). If corporations couldn't find a way to turn a buck based on such a large amount of publicly-financed research, then screw em. We the people will get the same treatments and drugs, patent free, a little later, and be better for it.
...didn't you and I just go at this over on Fark less than 12 hours ago?
Someday, you're going to die. Get over it.
It wouldn't stop turning. It would just turn much slower, simply because the people who made these discoveries would not have the incentive to do so.
Creating Linux and discovering that a particular gene suggests cancer are two completely different pieces of work. Genetic discoveries require massive amounts of brainpower, equipment and fundamentall, money that the OSS model would never be able to provide.
The world is driven by money, no matter how much it hurts you. People simply will not invest money for research unless there is a RETURN. People will not WORK unless they are paid money. There is no RETURN on a dollar without WORK. Therefore, if you do not receive money for a genetic discover to cover all the failed attempts you've made in the past 10 years then you simply will not get a RETURN on your dollar spent. People do not work for free. I could sit here and write hours worth of code for free to solve peoples problems, but who is then going to pay for my sandwich????
Makes me think there might be some money in figuring out the make-up of the coming year's flu virus, patenting it, and then charging a fortune for each flu shot...
Patenting a method of detecting a gene or flu virus is one thing (leaving open other methods for doing the same) but patenting the the thing itself (gene, flue virus) preventing work on all methods, is another thing entirely.
I keep seeing the concept that, somehow, there is this sacrosanct bubble of massive profitability surrounding 'ideas' or 'creativity' that must never ever be tampered with lest it pop and we are swept back into the Dark Ages covered with pox because our artists stop singing, actors stop acting, programmers stop coding and biochemists throw their hands up in despair because they're surrounded by a world of need without any financial means to create. It is as ridiculous as the idea we simply give everything away. There is a happy medium involving slightly more modest returns and the deaths of a few million fewer people, once we embrace the idea that philantrophy can come ahead of luxury.
Try not. Do or do not, there is no try.
-- Dr. Spock, stardate 2822-3.
Negative. The Human Genome Project was formed for the sake of SHARING the information to MAKE discoveries FASTER. So they charge a butt-load now, but the patent is only good for a few years, after that its useless. You still do NOT know how much money was SPENT on finding this particular gene. You also need to cover all the failed attempts as well! Call it greed, call it whatever you want, but these people need to make money. If they don't, then the gene that causes stupidity will never be found and we'll ALL be screwed.
but I don't care. I'm pretty pissed off about this.
You can't patent a gene; it's design was created either by 1) Evolution, 2) a Higher Power, or 3) Some combination of 1&2.
As a British-Columbian with a wife, sister, mother-in-law, aunts, etc, who might have to travel 3000 miles for testing to determine if they carry either of these genes, I'd like to say to Myriad Genetics, Fuck You.
Also, if the HGP put restrictions on how Pfizer et. al. could USE the information, they'd opt to NOT USE IT which defeats the entire purpose of pooling the information together!
You also need to keep in mind that these companies benefitting from it are LARGE donars to projects like this. They're doing way more good than bad which is the way we want it.
Here we have a potentially life-saving process. This is a process that could potentially save thousands of lives over the next few years. Unfortunately, this process is not accessible because some idiots in Utah claim they own the genes that need to be tested!
Another example of a US company forcing its bogus concepts of IP on people even though it does more harm than good, in another country, even.
Even though I'm not typically for more laws, in the US we really need some sort of law in place that states quite simply that: (1) Genes can not be patented. Put all genes in the public domain. (2) Companies that own the patents of processes that could potentially save lives in this manner should make them available at reasonable cost to people who need them rather than gouging the heck out of people.
Why is it likely we won't see this sort of law? Probably because congress is getting lined pockets from people who want to patent stuff that has been around since the dawn of humanity.
As for people outside of the United States, I urge you to voice to your governments that US patents like this should be ignored.
"You spoony bard!" -Tellah
It goes to the original link.
This, however, seems to be clearly a patent on a gene, according to the claims section. It appears to be related to the patent linked originally.
It's a bit hard to tell what patents are related in what way, aside from the references section. Either way, it reads like Myriad's patenting general testing procedures, results, and genes, trying to gain a monopoly on breast cancer research.
It's worth noting the "Assignees" on both patents. If I understand correctly, "assignees" are the entities that actually own the patent, usually the organizations the inventors work for and have likely signed contracts with automatically assigning all products of their work:
Assignee: Myriad Genetics, Inc. (Salt Lake City, UT); University of Utah Research Foundation (Salt Lake City, UT); The United States of America as represented by the Department of Health (Washington, DC)
So it appears Myriad isn't the only owner of the patent, but perhaps the University of Utah has transferred their control to Myriad, and is it possible for the USA to hold patents, since it also gives them out through another body?
Someday, you're going to die. Get over it.
Actually, what congress should do is make these kinds of life saving drugs free! Not public domain, but truly free to anyone who needs them. That way nobody has to die unnecessarily. But of course, the corporations that manufacture, research, test, these drugs need some kind of compensation. So, here's what I propose: anyone who would otherwise die without a particular drug, should therefore give 100% of future earnings to the company that developed the medicine. Without said medicine, these individuals would die and thus any future earnings are entirely the result of the research done by the company. Additionally anything that their heirs would have inherited should be split 50/50 with the heirs in question and the company. Seems like a good idea to me.
I'm sure nobody wants to do that, but as time goes by and it is discovered that there are certain lifestyle choices that lead to reduced overall health and the resulting health conditions are being corrected and treated by tax money, well fuck that shit. If a person chooses to do something that reduces their quality of life, they should be the ones who have to bear the burden of those choices.
Looking for details on the patent I got the page with the abstract. No one wonder these things get through. Its enough to let anyone want to skip over it and just patent the damn thing.
Jumpstart the tartan drive.
Unless you are a patent lawyer, don't expect to understnd the patent by simply reading it. By the way, they have more than one patent with resepect to these genes.
In fact the patents are extremely broad in application and forbid any other institution (hospital, lab, etc) from conducting the test for diagnostic purposes in the clinical setting.
It is not that they have patented a technique to find mutations in these genes (like a particular testing protocol), but instead patented the use of any diagnostic test to find mutations in these genes because they would be comparing the mutatnt sequence against the patented sequence they have.
Your point about the Mormon records is completely irrelevant. There are many research groups that understand what is and what isn't a mutation.
Myriad also would not have found the gene if other, publiclly funded, research had not been completed before they threw money at the situation. The most difficult issue was to find out what portion of what chromosome the gene was on. They did not do this. Running the sequencers day and night to pinpoint it only requires money.
You are corect, performing a diagnostic test for the 2 genes involved (BRCA1, BRCA2) is not complicated and can be performed via a number of procedures. However, the Myriad patent, if enforced completely, would only allow their test to be used. A test that misses some mutations that would be picked up by other types of analyses. See large deletions as stated in the European attack on the patent.
Is not black or white as it seems.
...AND what a private company wants to research and develop will not necessarily be the same as what a non-profit organization will be motivated to do. Sort of the decisions the HMO's in America do when deciding who gets treated and for how long.
... and how many treatments @ $3,500 can u afford?!!
Research and development has been done by government funded institutions... And most of this knowledge has been shared and not patented or sold.
my $0.02
So I'm curious, can you give a breakdown on what the various proportions of research costs, administrative costs, test costs, and what not that go into transforming a medicine from theory to an actual on the shelf product? You state that "*most* of the groundwork for drug research is done by universities." How much of the total process does that "most" and "groundwork" represent? Is it 50%? Is it 99%? Also is that research specialized or generalized work? Does this groundwork actually present a foundation that multiple medicines will be built upon, as the name "groundwork" suggests. Additionally, how much of the product costs are actual scientific research and how much is administrative costs and how much is determining that the product is safe for mass consumption. Does this groundwork research allow a pharmaceutical company to start on step 75 of the 100 steps necessary to get FDA approval? Or does it still require that the compnay goes through the entire, lenghty and expensive, process?
Until they had a really good absis to begin with, USA did not respect any intellectual property at all. this was only at the end of the 19th century, beginning of the 20th when they began to have soem advance that they began to really think hard on intellectual property.
And now that they seems to have a big advance, they wnt to "lock out" of the system the concurrence. thus WIPO, thus pressure to rise IP protetcion decennies, thus other pretty law.
C. Sagan : A demon haunted world:
http://www.amazon.com/gp/product/0345409469/
visit randi.org
"What frusterates me is that the *most* amount of groundwork for drug research is done by universities. Pharmaceutical companies fund the commercialization and last mile research."
. html Whose patent on Cox-2 inhibitors may entitile them to royalties in the *Billions* of dollars. They are by no means alone in profiting from their research.
And Universities are now cashing in on their research - to note the University of Rochester
http://www.urmc.rochester.edu/Cox-2/pr
...but pharm corps spend twice as much on advertising as they do on R+D.
My next sig will be ready soon, but subscribers can beat the rush
This has become the standard model and once you start looking, you can see it everywhere :
Socialise costs
Privatise profits
My next sig will be ready soon, but subscribers can beat the rush
pharm corps spend twice as much on advertising as they do on R+D.
If this is true, why not put a compulsory license on drug patents, for 1/3 or so of the wholesale price of the drug?
Will I retire or break 10K?
...that only biotech corps do research, which is patently false. As an aside, note also that these corps typically spend twice as much on advertising as they do on research.
My next sig will be ready soon, but subscribers can beat the rush
Somehow people seem to think that medicine comes from some magic wand that costs nothing to wave so we can have infinite research, development, production, etc. for zero or nominal cost.
/. we complain about the DMCA and UITCA, but the FDA and tort system do the same for medicine), it will NEVER be able to follow that model.
Since there is no opensource model for drug development, and worse, it is highly regulated (Here on
Why are most of those drugs developed here and not in France, Mexico, or even Japan? Or even Canada? Canada is free to spend more on its health care developing its own drugs (will THEY give them to the US for free or below cost?).
Meanwhile, our military does protect Canada, while it lets in terrorists and even gives them welfare so they have more time to figure out ways of killing US Citizens. Personally, I think we should not be an empire, but if we are, our "friends" should recognize what it means to them.
Sure. After all, Salk, Fleming, and Pastuer were only in it for the mondo dollars.
It's cute and funny now, but just wait 50 years... Race-based caste systems really, *really* suck. At first for the people on the downside, eventually for everyone. Oh well, when they have their civil war, at least the state will pick up the tab on the casualties!
What's even better than a draconian HMO?
A government that won't give you a choice.
YAY!!!
So can My wife get this test done if we travel to Ontario? Better yet, can we send in a blood sample? Has anyone doen this? My wifes doctor gave her a pamhplet on this damn test.. 3k... bit steep for us right now, but we could probably manage $800.
Thanks
Couldn't the guy claim prior art? :^)
It's a tricky call -- on the one hand, research is good and should be rewarded. On the other, some companies seem to be doing a bit of "gene-squating". They don't have to do research; they own the gene, and anyone who does want to do research or develop new treatments has to pay them. Human genetics as IP makes me nervous.
One line blog. I hear that they're called Twitters now.
No argument there. If companies do the cash grab, then universities are kind of forced to do so, since prices for the equipment for research are going to be set by the market, including these wealthy drug companies. If companies get richer and richer, equipment makers can charge more, and universities find themselves unable to afford to continue leading edge research without following the lead of companies.
"Old man yells at systemd"
On the contrary, I never said that this guy was NOT potentially sleazy for what he's charging. I merely stated that we do NOT KNOW the cost of the research involved. Average drug costs $800M to develop... who knows how much went into finding the significance of this gene. Biotech is nowhere near cheap, so we really do not know if this person(s) is taking advantage of those poor oppressed Canadians. We also do NOT know that public funding even touched the research on this. We also do NOT know whether this person contributed to the public funding. What we DO know is that this guy needs to make a living and needs to cover the costs of the developments. This is Capitalism and it works for a reason. If we kicked this guy in the balls by not letting him make a profit in the past, then you'd be pissed when you came down with prostate cancer and had no way of predicting it because you removed his motivation and drive to make a buck. It is inherently common sense.
Note: When I refer to this person, you can substitute any company/organization in the industry.
In fact the patents are extremely broad in application and forbid any other institution (hospital, lab, etc) from conducting the test for diagnostic purposes in the clinical setting.
No, the patents are not broad. In fact, it is the specificity of the patents that make them so enforcable. The USPTO consulted with Myriad a few years back when the rules and requirements for genetic patents were redone. The Myriad patents were seen as good examples of this type of patent. The problem that other institutions have is, there really aren't many ways to sequence DNA. Nature worked out a pretty reliable method, and Myriad has figured out how to mimic the process in the lab. This process is patented. If someone else figures out a new way, they can certainly patent the method- and probably get a nobel prize in the process.
Your point about the Mormon records is completely irrelevant. There are many research groups that understand what is and what isn't a mutation.
Wrong. It is very relevent. First, the location of the BRACA genes were found through geneaological reserach. Second, if you sequence your mother's BRACA genes, you will have no idea what you have other than a long string (20,000) of letters.
Myriad has done significant research to catalog and understand the nearly 2,500 mutations and variants of the BRACA genes. Geneaology records helped Myriad determine what mutations were bad, and the degree thereof, before they went commercial with the test. Current research (done by many places outside of Myriad, BTW) adds to the information.
There really isn't any other way to sequence the gene. And Myriad has recently introduced an enhancement to the test that handles deletions and large rearrangements. Many places complained that this was a big deal, but it has been demonstrated that these sorts of mutations are very rare.
Basically, these kinds of patents are not significantly different from patents on diagnostic criteria. It's similar to patenting "a method for diagnosing sunburn by observing a reddening of the skin and asking the patient about recent sun exposure".
Are we going to have other (non genetic) diagnostic criteria patented as well now?
Lets /. them faster than that freestate
Well, it's a tax issue if you agree that it's the government's job to pay for healtcare.
1. It doesn't encourage personal accountability in form of healthy lifestyle choices. If I never smoke, drink, or do drugs, and concentrate on positive activities instead - eating a healthy diet, exercising regularly, etc. - I still pay for everyone who doesn't.
2. Healthcare is a captive market. People have a natural tendency to avoid having to check out early, thus making it very easy for any commercial interest to take advantage of the situation- and they do. This is why the US gov has been known to pay three times the market rate for the same item to a healthcare provider under one plan, than it does under another. This is also why an insurance company can raise its rates 17% in just one year without blinking an eye, why pharmaceutical companies can rape their customers and get paid to do it, and why this whole mess will really get ugly once all the gene patenting nonsense starts to take hold.
What does all this mean? Who knows? It wouldn't bother me to see a healthcare meltdown, akin to the dot-com bust. Things are way out of control, and it's quite possible that anything short of a massive realignment won't have much of an effect, as there are just too many entrenched interests.
Welcome to the emerging world of the corporation. Where nothing is more important than profit.
Personally I think that the people who run the corporations that would allow people to die in order to bolster their bottom line are committing a crime against humanity. I also believe in making the punishment fit the crime. Hmmmm.... How about we have their ears surgically altered to make them look like the profit motivated Startrek race. The Farengee?? (spelling?)
The race isn't always to the swift... but that's the way to bet!
It all looks good until you live under it.
Tell it to a family friend that had to pay to fly to the US for heart surgery because he was put on a waiting list in the BC. According to his own doctor that waiting list what his death certificate. Where do most Canadians go for heart care?
It is also amazing what is considered elective surgery under socialized medice. Reconstructive knee surgey, 6 month wait - even if you can walk and the damage gets worse as you wait.
Crumbling hospitals, ask the UK.
the US health costs are out of control not because we don't have socialized medicine but because trial lawyers are draining the system dry. Without tort reform even socialized medicine will get clobbered. So, why is it that Democrat proposed socialized medicine would clamp down suits but until then they say its unfair to limit damages? Simple, they want to break the system.
Given the choice of socialized to what the US has, after getting the real stories from friends of family AND family - forget it, I will stick with the US system
* Winners compare their achievements to their goals, losers compare theirs to that of others.
For those wildly speculating or just wondering about the research races, patent conundrums, ethical dilemmas and personalities involved, the book Curing Cancer : Solving One of the Greatest Medical Mysteries of Our Time, by Michael Waldholz, covers the race for BRCA-1 (the first gene really linked to hereditary breast cancer) up to about 1995. The founders of Myriad are an important part of the story, and it's an interesting read.
;-) ).
I have been friends with key founding personnel of Myriad for over 30 years now, and I believe they are sincerely devoted to improving humankind's lot. Although the ethical issues raised are very sticky, there would not have been a good gene test to be fighting over so soon if it were not for their research. But Myriad is now a public company, and unfortunately the almighty buck (a.k.a. stockholder value) governs their decisions much more than in the early, research-oriented days of the company. I think the failing is not with Myriad's medical ethics, but with the insanely high quarterly returns that are demanded of public companies, regardless of any Bad Things that may result for society (and/or Canada
You shall see a cow on the roof of a cotton house.
Whether a patient's results from a BRCA test are negative or positive, the patient is left with information that does little to dispel fear and instill hope. See Marketing Fear in this month's Z Magazine.
People stop getting paid royalties, ergo:
People no longer have incentive to develop treatments for the discovery of cancerous cells, ergo:
More people die from cancer.
Someone pulls their head out of their cancerous asshole and feels that living is incentive enough...
cogito, ergo sum.
Isn't there about a billion years of prior art? If that doesn't matter, then I will make a killing by patenting the numbers 0 through 9.
Well, I'm sorry to hear that. I'm sure that in Candada you are very happy to rely on US protection. However, as a citizen of Canada, I find the looming US giant more oppressive than protective.
And as another note, Canada IS often more liked as a country (whether by deserved reputation or not). We may have to protect ourself against crackpots, but the police tend to handle those. As for other countries, most of them tend to be a little more friendly towards Canada than the US, probably due to a more practiced policy of non-interference.
With several friends in other countries, most of whom have visited the US and Canada, I have to say that the North does often tend to be friendlier. And having less people pissed off at one's country is often its own little ounce of prevention right there.
Wouldn't it be nice if one of those cybermillionairs out there (and there are some left) would pledge $5 million to fight this patent in court. The idea that a company should be able to patent a gene and charge for access to it is obscene. This is not business, it's robbery. To compare this company's actions to the legitimate recouping of R&D is ridiculous.
That there are people in BC not getting this test because of this company's actions should be sufficient to land the executives and lawyers of this company in jail. And the BC government should also be condemed. For lack of a better term, they not have the balls to look out for the well being of their people.
Bad eyesight will kill you if you walk into busy traffic!
Fucking patent bastards.
PATIENT: I need you to test my genes for cancer! HOSPITAL PERSON: I'm sorry, due to patent law, you're gonna have to hand those over. P: What? H: Your genes, hand them over. *Patient takes off pants* H: woah woah woah here! Noone asked you to do that! P: But you just said- H: GUARDS!!! Arrest this man! P: I didn't do anything! H: Take him to the de-gene-erater. P: Help! *Guard punches patient in the stomach* P: Ou! ....Can't we all just get along? Let's sing a song together!
H: No! That's patented by the RIAA.
Let's ignore the fact that patenting a discovery that is part of nature is plain stupid now (it made sense to encourage genomic research in the early days - now any jackass with a PCR machine and a grad student can discover new genes) With that assumption in mind, for your point to be valid these companies would have had to actually invest in the discovery. Usually what happens is that the genome-looters discover these genes using government funds. They then turn around and start a company to market their spoils.
This reminds me of my first week of med school. We were presented with hypothetical scenarios followed by questions to test our outlook on social and ethical issues (I think we were the control group) One of the scenarios involved the lone pharmacist in a remote town who had the only drug that could cure a man's wife. The pharamcist has priced the drug over an above a fair profit (like a markup of 300% or so), which placed it way above the man's reach. One of the questions was whether the man was right to break into the pharmacy and steal the drug. Everyone I talked to agreed the guy had a right to do so (maybe all my friends are pinkos). The point is we should strive to be civilized humans working for the good of all, not greedy capitalists/Ferengi (gratuitous STtNG ref for /.). Unfortunately most of us have been brainwashed since birth that socialism is evil and capitalism = freedom.
In fact the patents are extremely broad in application and forbid any other institution (hospital, lab, etc) from conducting the test for diagnostic purposes in the clinical setting. No, the patents are not broad. In fact, it is the specificity of the patents that make them so enforcable. The USPTO consulted with Myriad a few years back when the rules and requirements for genetic patents were redone. The Myriad patents were seen as good examples of this type of patent. The problem that other institutions have is, there really aren't many ways to sequence DNA. Nature worked out a pretty reliable method, and Myriad has figured out how to mimic the process in the lab. This process is patented. If someone else figures out a new way, they can certainly patent the method- and probably get a nobel prize in the process. You are clearly not well versed in this area. my guess would be a lawyer and not a biologist/geneticist because you clearly have no knowledge of basic biology. I am a genetic counsellor who has been dealing with this test for nearly a decade. There are a number of ways to determine if there is a mutation. myriad in no way created the technique to "sequence" DNA. "Myriad has figured out a way to mimic this in the lab is complete nonsense." Sequencing predated Myriad by at least a decade. They use commercially available machines that fresh students can operate. The issue is that no one else, if the patents are followed closely, can do a diagnostic test on BRCA1 or BRCA2. Once again you are stating complete untruths. It is not the process that is the problematic issue. the patent does not allow any other North American centre to use the gene sequence in a clinical setting. in other words, patients cannot get their DNA tested other than through Myriad. Ontario has been asked to stop performing the Protein Truncation Method, they do not use Direct complete sequencing like Myriad. Diagnostic labs are not interested in Myriad's big money sequencing process anyway. Why do then think there is concern if the patent only covered aprocess no one uses. Do not mislead people. Your point about the Mormon records is completely irrelevant. There are many research groups that understand what is and what isn't a mutation. Wrong. It is very relevent. First, the location of the BRACA genes were found through geneaological reserach. Second, if you sequence your mother's BRACA genes, you will have no idea what you have other than a long string (20,000) of letters. This is a direct mistruth. the majority of the work undertaken to find the gene happenend at a number of research centres around the world. They all pointed to the specific area on the specific chromosome where the gene is. They include Montreal, where Canadian families selflessly contributed their blood samples to research to help find the gene. This research was paid for by "PUBLIC" money. Tax money, the peoples money, your and my money. Myriad stepped in when the area had been reduced (the hardest part of the discovery process) and power sequenced to identify the actual gene. A solution that is very lowbrow in terms of "invention" which provides another avenue to fight the patent. By the way, cataloging the mutations is an accounting procedure and does nothing to determine their effect. This is typically carried out by research centres by genetic epidemiologists and molecular biologists who correlate the family histories and putative mutations together. Myriad has done significant research to catalog and understand the nearly 2,500 mutations and variants of the BRACA genes. Geneaology records helped Myriad determine what mutations were bad, and the degree thereof, before they went commercial with the test. Current research (done by many places outside of Myriad, BTW) adds to the information. ...the Myriad patent, if enforced completely, would only allow their test to be used.
There really isn't any other way to sequence the gene. And Myriad has recently introduced an enhancement to the test that handles deletions and large rearrangements. Many places complained that this was a big deal, but it has been demonstrated that these sorts of mutations are very rare.
Please do your research before stating this information. "There really isn't any other way to sequence the gene...other than Myriads test does not pass the laugh test.
I am a genetic counsellor who have been working with these families and this test for years. The blanket statement that the results don't really help is a bit reductive. Some ar ehelped very much by their results. It may lead to different screening than the person might have had previously or draw attention to cancers they had no idea they were at risk for. Also, the only way a person in a family with many cases of breast and ovarian cancer can find out they are at no increased risk is if a mutation is identified in the family and they are found not to carry that altered versin of the gene. Some are actually releaved that they know the cause of the family's legacy of cancer. many want to know the informatin for their children's benefit. I read Z magazine but haven't seen the article you speak of. Will read and respond.
Did any of them die a pauper.
No Text
You're missing the point, kevlar. Everyone repeat after me:
More quotes from kevlar: If anyone could test for these genes without paying royalties, then the guy who made the discovery will not have ANY incentive to do the same in the future!Is this guy doing research for the sake of his own back pocket, or is he doing it to help others? If the former, he should be denied the patent on moral grounds. If the latter, your argument doesn't hold any weight, since supposedly helping others is the incentive.
Now on another note, the Canadian health system has much worse problems than this patent issue. If my mother/father died of cancer and I knew this test would determine my risk, I'd fork over the $3500.
That is, of course, your choice. Just please don't force it on the rest of us, OK?
This post expresses my opinion, not that of my employer. And yes, IAAL.
This couldn't happen if some congressional pockets weren't being lined in the first place.
On this point I agree. Here's some food for thought: bribes don't affect the Justices of the US Supreme Court, because the office holds a lifetime appointment. They shouldn't affect the President or the Legislature in the ideal, but they do since these are elected offices. In other words, expect Congress and the President to screw up. At least we've got a (theoretically) unimpeachable backup in place to control the damage.
This post expresses my opinion, not that of my employer. And yes, IAAL.
But redundent for basic genetic research?
Does the moderator not realise that "basic genetic research" as performed in Universities with public funds heaviliy involves making tests that identify genes? If that is "redundent" in a post about an article about the high cost of a GENETIC TEST, what is OT?
Oh, drug development, of course, how silly of me...
Gee, wouldn't it be GREAT if we had socialized health care *just like Canada*!
h care-in-the world-(do some homework)-even though your shitty wait-three-months-before-they-stauch-my-exploding- carotid-artery has been healed by the most intelligent members of society.
Oh, wait a minute . . . Since the MDs have been socialized, they don't *really* need to be good.
Wait again. I'm sure you've met incredibly intelligent MDs in CA. After all, that's what *I* would do if I were so smart.
Whew, at least we now have an explanation for the mass exodus of USA citizens to Canada for its superior medical care.
o See, I was starting to wonder why Canadians were paying out-of-pocket to come of the US-of-fucking-paying-for-receiving-the-best-healt
"Saddam Hussein cavorts with terrorists."
------
kevlar wrote:
On the contrary. Who is going to develop new tests for hereditary diseases if the entire world can legitimately test for it without royalties? How will this encourage research? Money drives the world for a reason. Now I admit that $3500 to test for a certain gene is quite steep, but we do not know how much money was put-forth to determine the offending genes.
-----------
This breast cancer gene--like most of the genes that have been discovered and researched to the point where we can understand the biological role that they play--was discovered mainly using public research funds. That's big Pharma's dirty little secret: university researchers, supported by public institutions like the National Institutes of Health, do most of the basic research leading to understanding of genes, function, and drug discovery. Towards the end of this process, which can take a decade or more and tends to meander based on the individual researcher's interest, the researcher may apply for a patent on the discovery. However, the researcher knows that he/she cannot take the discovery beyond this stage--someone else needs to find a commercial use, do the patient testing, apply to the FDA, etc. So the researcher sets up a small company that is then usually acquired by a larger Pharma co. The Pharma then turns the discovery into a commercial product. This costs money, yes, and sometimes a lot of money if drug tests are involved, but the main point is that the company is commercializing a discovery *paid for by public funds*.
In Myriad's case, production of the test would have been relatively cheap--no Phase I/II/III trials that drugs require. So they're not operating on much of a discovery loss and, based on the way the test is conducted, I can swear to you that it doesn't cost them anywhere near $3500 per sample, even when you include all the overhead costs that go into a lab. They're making a killing.
Somehow people seem to think that medicine comes from some magic wand that costs nothing to wave so we can have infinite research, development, production, etc. for zero or nominal cost.
;)
Nobody thinks that drugs should be free. They do think they could be made a lot cheaper than they are. And it'd be a lot more convincing when the pharamaceuticals deny this if they weren't spending twice as much on marketing as on R&D.
I mean, really, doesn't it seem a little off to be complaining of being crushed by one expense when there's another 2 1/2 times bigger?
Why are most of those drugs developed here and not in France, Mexico, or even Japan? Or even Canada? Canada is free to spend more on its health care developing its own drugs (will THEY give them to the US for free or below cost?).
Because we have the most developed pharmaceutical industry. Is that because we pump the most dollars into our medical care? Or is it because of the benefits of this country's tech industry? Or is it because of our higher education system producing the best engineers? Or is it because free trade with us means no Canada-only pharmaceuticals can get a grip there? You may as well ask why Canada doesn't produce as many cars. You haven't show cause and effect.
Meanwhile, our military does protect Canada, while it lets in terrorists and even gives them welfare so they have more time to figure out ways of killing US Citizens.
Protects Canada from whom? I'd like to point out that all these terrorists manage to make it the whole way through Canada without blowing anything up. Canada isn't their target. We're protecting nobody but ourselves.
And besides, we give our terrorists green cards even after they've commited acts of terror, so who are we to point fingers?
Personally, I think we should not be an empire, but if we are, our "friends" should recognize what it means to them.
What are you even saying here? Are you saying that Canada should be grateful for us being an empire that we shouldn't be if in fact we are?
The enemies of Democracy are
It has come to our attention that you have violated our patent to cure your cancer. Therefore, you shouldn't be alive now. But this letter will kill you as soon as you finish reading thi.........
If anyone could test for these genes without paying royalties, then the guy who made the discovery will not have ANY incentive to do the same in the future!
0 1-September/001909.html
How about the University that made the discovery?
Some more info:
http://lists.essential.org/pipermail/ip-health/20
If they claim to 'own' the gene, or to have 'invented' the gene, then they must be responsible for its effects. Every woman who has developed cancer because of this gene should be able to sue the company.
MrCreosote Meow!Thump!Meow!Thump!Meow!Thump! "You're right! There isn't enough room to swing a cat in here!"
I find myself strongly opinionated when it comes to the whole gene patent issue. In general, I believe they are a bad idea. Which brings me to a timely discovery...The weekly issue of Nature that I received today, included a CD-ROM from the Nuffield Council on Bioethics.
The CD-ROM and web site include a discussion paper on the ethics of patenting DNA.Check it out here (summary and download link)
or
here (direct link).
For those interested on in this topic it looks like it could be an interesting read. The Myriad situation appears in a Case Study in the document.Meanwhile, our military does protect Canada...
uhh, right. Thank god you big strong Americans are around to protect us pansy-assed Canadians, otherwise Canada would have been overrun by those pesky vikings back in 1006.
Other than that, our policy of trying to find diplomatic solutions to foreign policy issues without forcing narrow-minded self-interests down the throats of other world citizens has served us well by NOT inciting foreigners to try to murder us on a massive scale.
It seems to me that all of the 9/11 hijacked planes took off from US soil. Protect your own goddamn borders, if your military is so all-powerful.
Yes, we give welfare to refugee claimants. Something about all humans having the right to the necessities of life.
I'm not your friend, bub. You and your cowboy president are going to get us all fucking killed.
I think i'll get started on my petition to have Canada ask to join the EU....
As anybody from BC knows, we have a two-tier system in which injured hockey-players (for us, here in BC, that means the Canucks) get priority treatment and regularly jump lineups. Our best doctors and surgeons are leaving us and some places (ie. Golden, BC and many many others) are paying tuition fees and huge signing bonuses just to attract fresh grads - who also happen to lack the experience that would make them attractive to American hospitals.
:P
I have a friend from school who is a quadriplegic because of an untrained surgeon's error... he was imported from India and his credentials were taken at face value. The story made several newspapers and is typical of the treatment one can receive at a Vancouver hospital.
This is the plight that we are in here thanks to our socialist health-care system.
Another case (prominently featured in the Province and Sun) dealt with a woman who couldn't save her own life by buying a liver transplant operation. The organ was ready, her money was good, but the queue was full. In a capitalist system, that demand would have been filled to the betterment of society.
My uncle recently had cancer and the only option for immediate treatment was to travel to Seattle. Canadian doctors had botched a stent implant, creating a slow internal bleed. He couldn't get scheduled for a complete scan in Canada, so we rushed him to Seattle where they found the bleeding and gave him seven units of packed cells -- ultimately it didn't save him, but the effort was made. His 50% chance was ZERO percent in Canada.
Some people have attempted to start private hospitals, but you wouldn't believe how the socialists scream when it happens. It's embarrassing, to tell the truth. I'm Canadian, and I know how badly our system is broken -- but at least it's better than the USA
ok now that I have your attention, MRI's still cost a lot of money even though the machine was paid for a long time ago. WTF is up with that, how could the possibly still charge all that money when the recouped their cost for equipment years ago.
And tell us what they say.
IANAL but write like a drunk one.
And let them know you will not buy or promote their products (research, methods, wahtever) if it is in your power to do so.
Then talk to your Congress person....
IANAL but write like a drunk one.
Reading the various linked pages I coudn't answer
Are the Canadians using the same tests that Myriad designed or ones they designed?
Also...
Where is the patent?
So what if a University made the discovery? Last I checked, Universities were synonymous with Corporations. This is one of the reasons why Princeton's endowment is so huge that they could essentially run the school without charging tuition and still not lose money.
Part of Nature? Yes, it is. But what they have discovered is a gene that when located in a person's body will identify whether or not they'll develop cancer. This is a BIG HUGE DEAL. The years that went into this development are at a cost. The company needed to employ multiple PhD's and support staff and sequence mostlikely millions of genes to isolate this one. That all comes at a cost. If we want companies to FIND things like this, we need to provide them with an INCENTIVE!
Drug companies invest on average $800M in EACH drug they produce. This is NOT including any losses from FDA denials or lawsuits they may incur. It takes massive effort to produce these things and it all costs money. The Open Source model will never be able to be applied en masse to this type of research without heavy monitary donations. It takes equipment, people, resources. If we all relied on donated time and goods then we'd all be waiting in lines for toilet paper each week b/c thats essentially communism in essence.
My wife and sister are nurses here in the States. We went to Winnepeg this last summer for a wedding. (My wife's parents are from Winnepeg). My sister-in-law went to a bar and had a conversation with another nurse from Canada. It was quite remarkable the differences between the States and Canada. American Nurse night shift patient load 4-5 people. Canada, 20-30 people. How can one nurse do a good job with 20-30 people to watch. I'd hate to have that _health_ care. Our system may not be perfect but it sure as hell beats the canadian system. We have more MRI machines in Minnesota than ALL of Canada...
Perhaps in an extremely ideal world where this would even be remotely feasible. Unfortuntely enforcing this is impossible since every single drug ever manufactured is based off of statistics, not fact. Identifying an individual as definitively surviving some disease as a direct result of a drug is impossible. You can only make assumptions.
First, the genes identified to be a contributing factor in breast cancer (BRCA1, BRCA2) are not themselves cancer causing and EVERYBODY has these genes. A gene is just a small portion of your DNA on a particular chromosome. What IS the determining factor for these 2 genes are very specific mutations within the genes. That is, small portions of the genes that are different in VERY specific locations from the norm. Just knowing where the gene exists and its location doesn't do much good on it's own without knowing EXACTLY what mutations to look for. Also, if the telling mutations are found within the BRCA1 or BRCA2 genes doesn't mean a woman has, or will get, breast cancer. It only means there is a higher risk of developing the disease. So the BRCA1 and BRCA2 genes are not on-off switches for breast cancer.
Also, the scientists at Myriad were the ones who discovered these genes AND identified the mutations the relevant mutations. The reason this test can be performed at all is because Myriad did the basic research.
As for the cost, running genetic testing is not like manufacturing a drug. The cost of manufacturing a drug decreases with a higher quantity. Genetic testing does not. Genetic testing requires a very sophisticated lab and a large team of people to process and analyze every test. Part of the reason the Myriad test is expensive is it's very FAST. Send your sample to Ontario and see when (and if) you'll get the results and how accurate those results will be. Chances are good it will take serval months to get the results. Maybe longer. Myriad can process a sample and have the complete results back in 3 weeks if necessary. This happens because Myriad has a very complex, high thru-put automated system for processing genetic samples and checking there accuracy. Most people who get this test are not willing to wait 3 to 6 months biting their nails for the results. Unfortunately, this high thru-put automated system costs big bucks but produces accurate results quickly.
I know all this because I work at Myriad. In fact I work in the Informatics dept. that writes the software to process the genetic samples and help identify the genetic mutations. Everybody at Myriad is very dedicated to providing the most accurate, and fastest tests available anywhere in the world. Myriad is able to process thousands of samples per month. Far more than any one else. We don't sit around and try to think up new ways to screw people. Everybody at Myriad cares a lot.