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Property rights in your own genetic material
Medopine
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So we're going to be discussing Moore v Regents of UCLA in one of my classes today, and my boyfriend and I had a rather heated discussion about it last night, so I was wondering what you all thought.
Wiki for Moore v Regents: http://en.wikipedia.org/wiki/John_Moore_v._the_Regents_of_the_University_of_California
Summary of the case from the Wiki:
"John Moore underwent treatment for hairy cell leukemia at the Medical Center of the University of California at Los Angeles. Moore first visited UCLA Medical Center on October 5, 1976, after he learned that he had the disease. After hospitalizing Moore and withdrawing extensive amounts of blood, bone marrow aspirate, and other bodily substances, Golde confirmed that diagnosis. At this time all defendants, including Golde, were aware that certain blood products and blood components were of great value in a number of commercial and scientific efforts and that access to a patient whose blood contained these substances would provide competitive, commercial, and scientific advantages.
On October 8, 1976, Golde recommended that Moore's spleen be removed. Golde informed Moore that he had reason to fear for his life, and that the proposed splenectomy operation was necessary to slow down the progress of his disease. Based upon Golde's representations, Moore signed a written consent form authorizing the splenectomy. Surgeons at UCLA Medical Center, whom the complaint does not name as defendants, removed Moore's spleen on October 20, 1976. Moore returned to the UCLA Medical Center several times between November 1976 and September 1983. He did so at Golde's direction and based upon representations that such visits were necessary and required for his health and well-being. On each of these visits Golde withdrew additional samples of blood, blood serum, skin, bone marrow aspirate, and sperm. On each occasion Moore travelled to the UCLA Medical Center from his home in Seattle because he had been told that the procedures were to be performed only there and only under Golde's direction. In fact, however, throughout the period of time that Moore was under Golde's care and treatment, the defendants were actively involved in a number of activities which they concealed from Moore. Specifically, defendants were conducting research on Moore's cells and planned to benefit financially by exploiting the cells and their exclusive access to the cells by virtue of Golde's ongoing physician-patient relationship.
Sometime before August 1979, Golde established a cell line from Moore's T-lymphocytes. On January 6, 1983, the Regents applied for a patent on the cell line, listing Golde and Quan as inventors. U.S. Patent 4,438,032 issued on March 20, 1984, naming Golde and Quan as the inventors of the cell line and the Regents as the assignee of the patent. With the Regents' assistance, Golde negotiated agreements for commercial development of the cell line and products to be derived from it. Under an agreement with Genetics Institute, Golde became a paid consultant and acquired the rights to 75,000 shares of common stock. Genetics Institute also agreed to pay Golde and the Regents at least $330,000 over three years, including a pro-rata share of Golde's salary and fringe benefits, in exchange for exclusive access to the materials and research performed on the cell line and products derived from it. On June 4, 1982, Sandoz was added to the agreement, and compensation payable to Golde and the Regents was increased by $110,000."
tl;dr: Moore was treated at UCLA, the doctors treating him took cells from his body (spleen and blood draws/bone marrow etc) and cultured a cell line from it, then patented the cell line and made money off of it.
Moore brought a claim on two issues:
1. Breach of fiduciary duty and lack of informed consent. (He won)
2. Conversion, i.e. the taking of his property and converting it to the property of another, as in the removal of his spleen and subsequent use by the doctors. (He lost)
The California Supreme Court ruled that Moore had no property interest in his own cells, and therefore could not recover on a claim for conversion. They stated that his cells were not unique to him because everyone has T-cells in their body. However the court didn't seem to grasp that the reason the doctors wanted Moore's particular T-cells was because they were unique in that they produced lymphonids (I think that's what it's called) at a much greater rate than a normal person's would. They also allowed the patent on the cell line because the doctors had worked so hard to create the cell line, it didn't matter that the cells they were patented were "Naturally occurring" and hadn't TECHNICALLY been invented by them at all.
So this raises the question - do we have a property right in our own DNA? It is unique to us, for sure, but can we treat it like property, sell it, control it, etc, in the same way?
Also do we have a PRIVACY interest in our DNA? Privacy rights protect a person's identity, personality, name, likeness, etc. What is more fundamentally part of our identity than our DNA? There are already laws preventing discrimination on genetic basis, by the way, and also preventing disclosure of genetic information to third parties.
Some points on both sides of the Moore case
- Will making cells personal property drastically chill medical research?
- If physicians are required to tell every patient before surgery that their cells may be used for research, will this cause a decline in patient care? For example, a patient might opt not to do a surgery unless promised a cut of the research profits, or may assume the doctor has ulterior motives and the surgery isn't necessary.
- If you agree to donate an organ to a family member in need (say a kidney), you have a right to direct exactly to whom that organ goes. Shouldn't you therefore be able to dictate what happens to any of your cells once they are removed from your body?
There's a lot here, so feel free to discuss any/all of it.
Wiki for Moore v Regents: http://en.wikipedia.org/wiki/John_Moore_v._the_Regents_of_the_University_of_California
Summary of the case from the Wiki:
"John Moore underwent treatment for hairy cell leukemia at the Medical Center of the University of California at Los Angeles. Moore first visited UCLA Medical Center on October 5, 1976, after he learned that he had the disease. After hospitalizing Moore and withdrawing extensive amounts of blood, bone marrow aspirate, and other bodily substances, Golde confirmed that diagnosis. At this time all defendants, including Golde, were aware that certain blood products and blood components were of great value in a number of commercial and scientific efforts and that access to a patient whose blood contained these substances would provide competitive, commercial, and scientific advantages.
On October 8, 1976, Golde recommended that Moore's spleen be removed. Golde informed Moore that he had reason to fear for his life, and that the proposed splenectomy operation was necessary to slow down the progress of his disease. Based upon Golde's representations, Moore signed a written consent form authorizing the splenectomy. Surgeons at UCLA Medical Center, whom the complaint does not name as defendants, removed Moore's spleen on October 20, 1976. Moore returned to the UCLA Medical Center several times between November 1976 and September 1983. He did so at Golde's direction and based upon representations that such visits were necessary and required for his health and well-being. On each of these visits Golde withdrew additional samples of blood, blood serum, skin, bone marrow aspirate, and sperm. On each occasion Moore travelled to the UCLA Medical Center from his home in Seattle because he had been told that the procedures were to be performed only there and only under Golde's direction. In fact, however, throughout the period of time that Moore was under Golde's care and treatment, the defendants were actively involved in a number of activities which they concealed from Moore. Specifically, defendants were conducting research on Moore's cells and planned to benefit financially by exploiting the cells and their exclusive access to the cells by virtue of Golde's ongoing physician-patient relationship.
Sometime before August 1979, Golde established a cell line from Moore's T-lymphocytes. On January 6, 1983, the Regents applied for a patent on the cell line, listing Golde and Quan as inventors. U.S. Patent 4,438,032 issued on March 20, 1984, naming Golde and Quan as the inventors of the cell line and the Regents as the assignee of the patent. With the Regents' assistance, Golde negotiated agreements for commercial development of the cell line and products to be derived from it. Under an agreement with Genetics Institute, Golde became a paid consultant and acquired the rights to 75,000 shares of common stock. Genetics Institute also agreed to pay Golde and the Regents at least $330,000 over three years, including a pro-rata share of Golde's salary and fringe benefits, in exchange for exclusive access to the materials and research performed on the cell line and products derived from it. On June 4, 1982, Sandoz was added to the agreement, and compensation payable to Golde and the Regents was increased by $110,000."
tl;dr: Moore was treated at UCLA, the doctors treating him took cells from his body (spleen and blood draws/bone marrow etc) and cultured a cell line from it, then patented the cell line and made money off of it.
Moore brought a claim on two issues:
1. Breach of fiduciary duty and lack of informed consent. (He won)
2. Conversion, i.e. the taking of his property and converting it to the property of another, as in the removal of his spleen and subsequent use by the doctors. (He lost)
The California Supreme Court ruled that Moore had no property interest in his own cells, and therefore could not recover on a claim for conversion. They stated that his cells were not unique to him because everyone has T-cells in their body. However the court didn't seem to grasp that the reason the doctors wanted Moore's particular T-cells was because they were unique in that they produced lymphonids (I think that's what it's called) at a much greater rate than a normal person's would. They also allowed the patent on the cell line because the doctors had worked so hard to create the cell line, it didn't matter that the cells they were patented were "Naturally occurring" and hadn't TECHNICALLY been invented by them at all.
So this raises the question - do we have a property right in our own DNA? It is unique to us, for sure, but can we treat it like property, sell it, control it, etc, in the same way?
Also do we have a PRIVACY interest in our DNA? Privacy rights protect a person's identity, personality, name, likeness, etc. What is more fundamentally part of our identity than our DNA? There are already laws preventing discrimination on genetic basis, by the way, and also preventing disclosure of genetic information to third parties.
Some points on both sides of the Moore case
- Will making cells personal property drastically chill medical research?
- If physicians are required to tell every patient before surgery that their cells may be used for research, will this cause a decline in patient care? For example, a patient might opt not to do a surgery unless promised a cut of the research profits, or may assume the doctor has ulterior motives and the surgery isn't necessary.
- If you agree to donate an organ to a family member in need (say a kidney), you have a right to direct exactly to whom that organ goes. Shouldn't you therefore be able to dictate what happens to any of your cells once they are removed from your body?
There's a lot here, so feel free to discuss any/all of it.
Medopine on
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pleasepaypreacher.net
Research and resulting large profit.
I mean, I'm really going to notice whether or not my urn is in a fucking luxury mausoleum or not.
It is when they take stuff they don't need while telling the patient he has to or he'll die, then profiting from it without the guy's consent.
Well it was more done without permission from the families, for the profit of the state. They sold the donated parts to research facilities. If anyone else did that it would be called grave robbing and they'd be in jail, the state does it and it's hunky dory until a lawsuit stopped it and now the organ donor rates in washington have gone down last I checked.
pleasepaypreacher.net
People are fucking crazy.
I can't even imagine what kind of sick fuck would do that to someone for money. Greed truely is one of mans greatest sins.
pleasepaypreacher.net
The issue is interesting because it doesn't really fit with property rights of anything we have today. Special cells are not like a car, cheescake or land because they can be duplicated at little cost. However they're not exactly intellectual property because no one really "thought up" how to make these cells and therefore there's really no reason to apply those laws because you're not really giving anyone an incentive to do anything. Giving financial rewards to people that just so happen to have nice DNA doesn't really make sense.
It doesn't make too much sense to give the doctors who extracted the cells "exclusive rights" to them either. Essentially they just got lucky that a unique person was in their care. But still, some work is involved. The person has to go through samples being collected and the doctors/scientists have to have to be able to identify the individual and develop the cultures. I think some kind of limited incentive system would be best. If the samples were collected for a legit medical reason, they can be used for research without the person's consent, but they do get some monetary compensation for that. In addition, the company has to license out the cell line for a reasonable fee, but large enough to encourage finding and nurturing good cell lines.
As for volunteering tissue samples, obviously the individual will always have a defacto monopoly because he can simply refuse to allow them to cut him open until he gets a lot of money.
The court said: "Bad doctors for lying! No lying to patients! Shouldn't have done that!"
Then the court said: "Doctors get to keep the cells they took out of the guy, and the resulting cell line, and the resulting profits, no problem, because even though they only got the cells through lying no one really owns the cells, so so what? Oh and here have a patent."
Effectively (putting aside the cost of the suit, harm to reputations, etc.) they did NOT get punished for using his cells for research without telling him; they only got punished for the act of not telling him. It just doesn't make a whole lotta sense to me.
I have a huge problem with companies owning the information on a specific gene.
If you have a special formula/production technique to use that gene, I'm fine with it being a secret.
However, withholding the information on a human gene is just awful.
the only solution I can think of to that is restricting patents to the specific use to which the gene intends to be put - ie, you can't own the code sequence itself for a particular enzyme outright, but you can patent the use of it to break down X substance for a particular purpose, as part of Y specific process. Either that or recognise gene information as any other kind of encoded information and only allow it to be governed by copyright law, as above.
This isn't the first time this has happened, by the way. There was a black woman in the US whose removed tumor was kept for research because the cell lines were immortal. There's roughly 300 pounds of her now spread all over labs in the US, and its been used to make all kinds of highly profitable breakthroughs in cancer treatment. Far as I know, she died without any compensation recently. She didn't even find out about it for decades after.
pleasepaypreacher.net
pleasepaypreacher.net
It's still kind of funny if the courts ever conclude people own the rights to themselves. Those doctors were harvesting that guy, clearly but I have a question: if a research clinic injected an experimental drug into my system and it cured my ailment, am I entitled to a portion of the big bucks for the rights if I didn't sign them away at the beginning?
What rights? Did you help create the experimental drug?
pleasepaypreacher.net
It's interesting to talk to someone with this kind of view (though not that terrible of course). My boyfriend is in med school and also doing his PHd, did some research for his Masters, etc so he's been in the research game for a while. He did not have a much of a problem with this case as I did - he simply didn't understand the basic violation of using people's cells without them knowing in the same way I did. At one point he said, "It's only DNA!" to which I replied, "What's more fundamentally YOU than your DNA!"
Anyway it's fun to have a partner you can argue with and not get mad at.
Did they help create my unique ailment? Dammit, I'm providing some resources here! I'm like an investor! 8-)
So my position I guess is that no one should have "owned" the genetic information beyond it being a part of the guy's body.
Indeed. I have a hard time not seeing this as a major issue. At the very least, they performed unnecesary procedures, claiming it was for his health, when it was for their financial benefits. You can't punish them for this in particular, and then not take away their incentive to do so. Hey, you can still make millions, but we'll say you were wrong? Pointless.
Hell, that genetic material was his, just as his hand, and if they want to own it they can buy it from him. Not doing so can cause all kinds of marketplace problems.
Henrietta Lacks? Died at 31.
Incredible cell line, that.
Exactly. I find the 'hell with the source of all our wondrous discoveries, dumbass didn't even know how valuable he was' to be pretty offensive. We compensate landowners for natural resources extracted from their land; this is no different to biotech companies stealing potential profits from native tribes because they don't have an army of patent lawyers and biotech experts living in their village. Its still their stuff out there making other people money. And I think there's a rather stronger ownership claim on one's own body than one's backyard.
In the case in the OP, there was no legal documents for lawyers to sort through re: who owned what part of the cells and patents and all that, which is why the patient got screwed, but in the future if a smart patient is aware that he is participating in a research project that may see profit down the line, it would probably be beneficial to have a contract which guaranteed their future rights to their genetic material.
I was wondering that, too.
I think this has largely been addressed, but I wanted to add my own response. The patient, obviously, has no right to profit from the research (he did not do them, so why should he?). On the same hand, why should the researchers have any right to profit from him? This is why we have contracts and ideas such as ownership. If they want to do research on him, or parts of him, they can buy the rights to do so.
I mean, hell, just think this through. Why should I, having this particular condition, HAVE TO PAY THEM to profit from me. Insurers aside, this makes no sense.
Especially since another version of the cell line has already been under production for dozens of years.
At least that's what the court thinks and what my professor told us today in class.
The problem with this is that their research and its end conclusiong NEVER WOULD HAVE HAPPENED without his cells at the start of it. Couple with the fact that they continued to take his cells as they needed to help culture and develop their cell line, and it makes things a bit murkier.
So they've recieved a patent on general cell cultivation techniques then, right?
...right?
"The innovation it took to actually keep them going and make a viable end product out of them should be rewarded (and incented) by an exclusive right to control over the process/line for a certain amount of years."
I strongly disagree with this sentence. I would be inclined to distrust any research that was motivated by such goals. So, I believe the ideal situation would be that the donor would be required to give up rights to any material donated, but at the same time it is not right that the researchers should profit from the material. If they weren't greedy bastards, they would have released the cell-lines for free or a nominal fee, they should not have tried to get rich on it the way they did.
If anyone tells me that break-through science is mainly due to a wish to get rich on part of the researchers, and that financial gain is a major driving force for making people do science, I will laugh in their face and say that any scientist driven by such goals is a bad scientist and should look for a different line of work... greed and a wish to become personally successful has no place in science and is a contributing factor to many of the scientific scandals we have had during the recent years. Sometimes I am glad that my own research is in a field where no commercial applications could be the result and the only interest is purely scientific curiosity.
But they didn't invent his genetic material, they just took it out and moved it around. What is so innovative about it? If there is something special about the process of cultivating the lines, they should be able to patent that, but patenting the genetic material seems silly to me. And if there were a lot of barriers to cultivation of the cells, it seems like that would present a natural barrier to others reproducing their results.
I guess I am just a bit of an IP-socialist (or whatever you would call it), and am rather suspicious about how beneficial these sorts of patents really are to society and innovation.