Who Owns Your Body? 133
An Anonymous Coward writes: "I came across this article in Scientific American's latest issue. The author describes some of the most unethical business practices in the biotech industry. A doctor can take your body tissue sample without your consent and can patent unique chemicals/cells found in it." This is a book review of what looks like a pretty interesting and timely book about bioethics.
Re:That's not what they mean by "unique." (Score:2)
And you know what, it still bothers the hell out of me.
If some doctor, down the line, uses my cells to develop some useful drug, patents it, and makes millions, I want my cut.
If that doctor found some useful drug from my cells, publishes the results in a reputable publication, and makes whatever intellectual property involved Public Domain, I've got no problem.
To me, the issue isn't that they're using my biopsies in a way that wasn't originally intended, what bothers me is that I might, unknowingly, be a key part in something that I find personally objectionable.
If they want biopsies, get the from themselves. If they want mine, then they get to play by my rules.
Dave
Barclay family motto:
Aut agere aut mori.
(Either action or death.)
"All your base are belong to us" (Score:1)
This and other goofy statements come from the Sega Genesis port of a Toaplan [toaplan.com] shooter known as Zero Wing [toaplan.com]. More information can be found here [toaplan.com], here [overclocked.org] and here [klov.com].
Re:That's not what they mean by "unique." (Score:2)
Apparently (the article mentions) one of the concerns with the Tristan da Cunha case was that there was a language barrier, and certainly an understanding barrier that might have prevented those individuals from truly understanding how much money might be made from their genes.
That aside, I would argue that most patients simply don't understand how the system works. As this becomes more common, and more money is made off of those patients (and drug prices remain high), look for the "thanks for healing me" attitude to change. Not to mention that an increasing number of discoveries will be coming from people who aren't actually sick themselves, and therefore aren't receiving any benefit from the development of treatments. Finally, while most people are grateful that a treatment is being created, they often don't realize that many of their fellow sufferers will be priced out of the cure. I think that the current model will work as long as these occurrences are few and far between. When they become the norm, people will suddenly begin objecting in larger and larger numbers.
Organ Donors and where the organs end up... (Score:2)
But I wonder where the organs of millions like me end up going? And is there a practical way to gain more control over how my organs are "donated" after my death? If it's too complicated the organs will probably just die and become useless before people figure out who can use them.
Ideally I'd like my organs to be first donated to people who need such organs to stay alive. Then I'd want to offer my organs to people who would significantly benefit (not cosmetic surgery) from such an organ. Only if nobody needs an organ (unlikely?) would I want it to go to medical research, first offered to universities, and only if no universities wanted it (unlikely?) to a biotech company.
Re:Quite so (Score:1)
The other point of interest here is what is the real value of a cell once removed from the body. I mean you cut your fingernails once a weeks, your hair falls out everyday, and you are constantly sheding skin. Do you own these items. If so, then would you not be liable for damages when your hair cloggs the shower at a motel. Furthermore, I think it is appalling that someone would be so selffish to try to obtain personal gain from the hard work (1000's of hours) by someone else just because after years and years of work they finally make the 'big' discovery. These cells are being used in an attempt to help others. They are not causing any discrimination to you, and their use in no way causes you harm. What is the basis for you not wanting to be a useful contributor to society? And you called the researchers greedy!!!
Don't assume you own yourself (Score:1)
Re:Quite so (Score:1)
I was half-dozing on a Navy bus several years ago, and had a strange dream. I saw myself dead, and two people were performing an autopsy on me. I had special organs in my chest that were unique. They took out these organs and used them for secret research. They were trying to understand something that was unique to me, and they were exploiting me.
I suppose the question is, When would this work be exploitation? The linked article indicated cases in which the biological samples supposedly produced unique products, not found in the general population. I suspect the article was deficient, playing on the public's notion of evolution a la "X-men." In this way, I suppose I could say that evolutionists have once again made their own bed (evolution-based racism being another time); now, they will lay in it.
Re:That's not what they mean by "unique." (Score:2)
You are right in pointing out that practices are sometimes misrepresented, and that the actual harm done in cases of violation of consent are often nonexistent.
Nevertheless, contemporary biotech research is plagued to a horrific extent by egregious ethical problems that simply aren't being addressed by a college of individuals bent on making a profit. This is in part the result of tremendous technological gains in recent years that have introduced biologists to things (hard computation, multivariate stats, intellectual property) they are not prepared for or accustomed to. The unethical practices are condoned or ignored for the most part because the average individual simply doesn't understand what the @#$$% is going on.
Perhaps your mice have made far more serious sacrifices than any individual might have. The point, however, is that your mice cannot reason and come to logical decisions regarding appropriate use of their tissue.
It doesn't matter one bit how many hours you or me or anyone else slaves over a scope or screen processing data. That data represents real people who have very real, acceptable beliefs over what is appropriate to do with their bodies.
The minute we begin to argue that our research or efforts take precedent over the will of freely volunteering participants, the humans involved have no more rights than the mice in your lab.
Biotech, with its patenting of human genes, increasing dismissal of consent procedure, etc., more and more is engendering an atmosphere where the corporate profit trumps human rights. The argument that "we did the effort, therefore we own the rights" is a dangerous one. No one OWNS the human body or its constituent properties except, perhaps, each one of us our own.
If anyone thinks patenting crap involving online shopping baskets, domain names, and protocol terminology is a pile of nonsense that you can't believe, just wait until the biotech stuff really gets going. We already have assinine arguments that so-and-so OWNS such and such a human gene.
Just read a previous SciAmer article a couple a months back outlining the mess regarding microarray chip patenting, with a half a dozen companies claiming the own the blueprints for part of someones' body.
Drives me crazy. Drives me especially crazy because I'm right in the middle of it.
Re:That's a good point. (Score:1)
The important point is that these cells ARE NOT unique to the individual. The discoveries just happened to have been made on those cells; they could have been made from samples taken from any number of other people.
Re:That's not what they mean by "unique." (Score:1)
I read about this in some "intellectual" magazine about a decade ago, I think; I don't remember if it was "Scientific American" or "Smithsonian" or some other. I can't quite remember the name of the woman from whose body the cells originated; it was something like Carmalita Lacks. She was a black woman who had cancer (I think it was intestinal cancer). She eventually died (2 or 3 decades ago), but the sample of her cancerous cells were used for further research, and donated to several other research centers. Eventually, her cancer cells found their way into most of the cancer research labs around the world. I believe there was a lawsuit brought regarding this case; did Ms. Lacks (or her estate) actually own these cancerous cells?
There was nothing uniquely useful about the cells that could not also have been found in another person's similar cancer. It just happened that Ms. Lacks was at the time and location in which this research was being performed. The research would have progressed as well with anyone else's similarly cancerous tissue.
Re:Bullshit. (Score:1)
The British Royal Family did.
Re:That's not what they mean by "unique." (Score:1)
Hippocratic oath. (Score:1)
Comment removed (Score:3)
you own your body (Score:1)
I dont know if it applies fo the americans but it applies for England and most other european counties that have a common law structure with England.
The case that determes this is An old colonial case where a african chief in a English colony sued (and won) the englich crown because they burried his leg and could not give it to him. (the leg had to be amputated due to snakebite) Unfortunately I dont have a refference to the actual case so if anyone can find it, please send it in.
Who owns your body? (Score:1)
Re:you're wrong (Score:1)
somebody else's work.. (Score:1)
Early to rise and early to bed makes a male healthy and wealthy and dead.
Re:Heart Tissue (Score:1)
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I'm not ashamed. It's the computer age, nerds are in.
They're still in, aren't they?
The real scary thing (Score:1)
The real scary thing about this is that patent offices are letting people patent anything they find. The patent system was not designed to protect discoveries, discoveries were meant to be published and copyrighted in journals.
Re:That's not what they mean by "unique." (Score:1)
Where do you get the idea that a patent implies that someone is going to make an unreasonable profit? For that matter, how do you decide what is an unreasonable profit?
If, as you suggest, a significantly greater number of people stopped permitting unfettered research on generic samples taken from the donor's body, the cost of research would skyrocket. The researchers wouldn't be making any more money, but their expenses would be higher, and the cumulative effect would be much higher costs for research performed. A lot of research wouldn't even be performed, because there would be no way to recover the expense of the research, much less make a profit. The only people who might benefit would be some donors, and it would be a short-term benefit, because medical progress that probably would have helped them would be hampered.
BTW, it may come as a surprise to you, but medical researchers generally don't make an exceptional amount of money. My Mom was a biomedical research lab technician at University of New Mexico. Her boss has been a friend of our family for several years, and I've known several researchers in various fields at UNM for several years. The medical researchers are not noticably wealthier than the physics or astronomy or literature researchers--or any professor at the University.
I read an article a few years ago that mentioned the public's perception that doctors are rich. The reality, the article noted, is that doctors have a much more modest income than people expect; generally around $80k a year. That isn't a bad salary; it would make a comfortable living; but, it isn't exceptional wealth, either.
Yikes (Score:1)
Re:Organ/Blood/Tissue Donation (Score:1)
"Unique chemicals/cells" (Score:1)
Thus, could he patent your DNA without your consent? And then sue you for using it? Okay, maybe not, but it would make an interesting court case...
Pharmaceutical company prophaganda. (Score:1)
I love it how these companies use the "Whe need huge markups to pay for Research and Development" excuse to plea for patent extensions and their warefare against the generic drug makers.
For an example of how little R&D plays in these companies' cashflow, lets take a look at Pfizer's fourth quarter earnings report [pfizer.com].
Firstly, they state many times that they are in a merger and the generally stagnent net is due to "Certain Significant Items and Merger-Related Costs" lest we think that the "Certian significant items" is research related, they state that "we invested $4.4 billion in Research and Development". Wow! that's a lot! more money than I'll ever see. Of course, this is from a company "with 2000 revenues approaching $30 billion"
So, wait a minute, pfitzer is saying that the cost R&D was only 15.7% of their gross income. This means that a generic drug manufactor selling a drug discovered by Pfitzer for 75% (a value that I think is very inflated, I heard a story on NPR a while back that said that the price of a drug can fall to a sixth of its original value after its patent expires) of it's original cost is actually making less profit on the drug after the cost of R&D has been removed from the equation.
It gets worse: Pfitzer stated that their "Full-Year Net Income [is] Up 25 Percent to $6,495 Million. That would be 6.495 Billion. So their net profit is 147% their entire R&D expenditures for 2000. Plus, Pfitzer says "while fully supporting our current products, including Lipitor, which had sales exceeding $5 billion, a Pfizer record.". So one drug had more sales than their entire Research and Development expenditures. I would also like to note that lipitor is a diet drug.
I discovered this information about Pfitzer because it was the first name of a pharmaceutical company that I could remember. I got their earnings report right off of their website, it took less than five minutes. Rather than blindly accepting the prophaganda, why not check out the facts?
These companies make massive amounts of money from their government mandated monopolies as they stand now, far more than it cost to research and and develop the drugs.
Quite so (Score:1)
Re:That's not what they mean by "unique." (Score:1)
Just because the AMA has enough money to make their prectices legal does not mean it's ethical.
Re:Yikes (Score:1)
Re:Attention Shoppers: Special Today -- Iceland's (Score:1)
My parents have got prior art.... (Score:1)
Patenting scientific discoveries (not innovations) is best compared to patenting a country, just because you were there first.
Re:Quite so (Score:1)
One word: DNApster. :-)
Re:Attention Shoppers: Special Today -- Iceland's (Score:1)
All iceland can do is to sue them. if they sue them in Iceland the company has nothing to worry about they just split. If Iceland pursues the case and sues them in another country then they can not collect or more likely will lose the case.
Of course Iceland is likely to do neither. It costs money to sue corporations especially overseas so it will just take it's shit and eat it like any other country would. After all what's exploitation of your populace when you have lawyers to pay.
Re:Quite so (Score:1)
oojah
Re:"Unique chemicals/cells" (Score:1)
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Re: patenting a country (Score:1)
regards. luky
Baaad analogy (Score:1)
And no, many medical researchers aren't doctors in the sense you mean. Sure, they have a PhD, and possibly an MD, too. But they don't make a physician's or surgeon's salary. Instead, the lead researcher probably only makes $50-70k. The people working under him the lab, possibly also PhDs, probably make somewhere under 50k.
Pure research isn't at all the lucrative field you seem to think it is.
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Re:I wanna GPL my DNA (Score:1)
What is the government going to do? It's the medical/insurance/biochem companies which decide what forms we have to sign. You'll have to lobby them to change their forms to give up the IP they might get from studying your medical samples. Good luck.
But they *might* find something unique. (Score:1)
Now, the doctor gets the funs.
The dilemma would be... (Score:1)
How am I effected if my doctor takes a cell sample from me? How does that change who I am or what I want from life? My personal philosophy would dictate any data dervived from me would be freely available to the world. But ultimately, the doctor would be doing all the work and can make the final decision.
Think about universities in the same stride. We were told in engineering while working on our senior design project the unversity would get the rights to our project or at least expect part of the profits if we would try to market the design. Regardless if we came up with the idea and did all the work ourselves, the university would claim a stake in it for the use of their facilities and resources.
In the same way, I would be the university trying to get something from someone elses work for using my resources. I think the practice of universities in this area is wrong and so would I be if I were to take a similiar stance.
Out of curtesy and a moral and ethical obligation, i would hope the doctor would ask first before borrowing my code. Regardless, if data dervived from my cells could save people and/or make a difference then point me in a direction and tell me where to pee.
Re:Mmmmmmmm. DNA. (Score:1)
Re:That's not what they mean by "unique." (Score:1)
Definitely not true. Some cell types in some individuals have the useful property of being immortal (ie, they can divide more-or-less without limit). One of the first immortal cell lines was discovered much as you describe, but the cells are limited to a particular phenotype (eg, skin cells). You can tell the difference between, say, skin cells and liver cells in cultre easily so contamination across phenotypes is identifiable.
Of course, a lot of biotech is done in such immortal (or artificially immortalized) cell lines because it's a heck of a lot easier. It's the first step before moving up to more expensive non-immortal primary cultures, which is the step before moving to more expensive animal studies (sometimes, those even go from inbred, genetically homogeneous strains to outbred, less homogeneous strains). The general idea, of course, being to get your process going in the most homogeneous system before slowly unleashing genetic inhomogeneity.
Re:The dilemma would be... (Score:1)
The resentment here isn't about being locked out of those millions (but as long as they're there, Moore deserved a large cut), but about the system patenting a naturally occurring compound to restrict its use to generate profits.
The doctor did not develop anything, the patient did. I'm just guessing here, but the compound has to have been incredibly rare, if not unique; otherwise it would have been spotted elsewhere. That shows that Moore himself had a lot more to do with developing it than the doctor did.
It's a shame that the Companies can buy the law away from its job of protecting us, especially when we vote for the lawmakers. You've got to hand it to them, though. They care more than the electorate. If actual people cared more, the Undecideds wouldn't have won in November.
Re:That's not what they mean by "unique." (Score:2)
If I wrote a program and distributed it, I'd be really pissed if someone FOUND something in that program and patented it, then started charging. So why should it be any different if someone FINDS something in my genes and patents it, then starts charging?
It used to be that you couldn't patent something you found, despite any funky uses it may have. You had to invent something to patent it. Otherwise people would have patented 3.141592... So why is it suddenly different with biotech? You can come along, have a rough idea of what something does, and lock it off from pursuit by other developers for years.
I realize money is an essential part of paying for research, but I'd be happy if Amazon didn't make any money related to 1-click and I'd be happy if biotech companies couldn't make any money from patenting genes.
And I know how patents are used. Offensively! You don't patent just what you know you'll focus on, you patent everything possible because you can keep a competitor from developing something...
Many patents retard development instead of helping it. If a field is so full of patents that any action taken is likely to infringe then you get companies like Rambus who exist just to sue companies who happen to trip over their overbroad patents.
Just change the rules a bit to only allow a patent on a finished drug that is ready for bottling. This patenting of discoveries is fucking pathetic. It's like an astronomer patenting a galaxy, just as insane.
And give up on that tired refrain about patents being required for industry. Patents just replace secrecy. The world developed without patents and would continue to do so if they were abolished. They may be helpful but that doesn't mean they're a natural law. If industry keeps abusing them to HAMPER growth then you shouldn't be suprised that people are starting to question the usefullness.
Re:Organ Donors and where the organs end up... (Score:1)
Re:That's a good point. (Score:2)
Let me instead offer another option... It involves poor (by comparison to anyone else in this discussion) patients, doctors, and researchers. Then it also involves lawyers, and managers. The researcher does honestly want to research, the doctor honestly wants to treat, and the patient wants to get better and go back to their life. They all receive a wage for a job. Then the lawyers and the managers come in, each making twenty times what anyone else does and not producing a thing. The company gets billions from some cure, the researcher gets a christmas bonus and a new labcoat, the patient gets to mortgage their house to pay a cure.
And then people question why the patient, whose cells were used to research this wonder drug, asks that they might get a little out of this. Perhaps even free treatment.
It's not patient vs researcher. It's patient/doctor/researcher vs lawyer/manager. I agree that the researchers probably aren't making a lot, but that's not the fault of the patient, it's the fault of the lawyers and managers who exist to milk to process for everything they can, at the expense of everyone else.
Re:That's a good point. (Score:2)
Seriously, if you don't need the patient, why use them? If you're trying to find something you can use, you want a sample you can trust. If you could take a sample from a patient whose life you know nothing about or a researcher who can give you a much better idea about any outside influences that might affect the sample, which would you choose?
But you don't, so either you need more samples, or you need a wide range of samples. Either way, if you require the help of a patient, compensate that patient.
I don't care if you say that patient wasn't important and that any one would have done. I hired movers, but they were really just a generic strong guy with a truck. Should I not bother paying them because any other mover could have done the same thing? The service they provided wasn't unique to them.
But, strangely enough, they expected to be paid.
Re:"Unique chemicals/cells" (Score:1)
off topic
My father has a simiular problem when he went into heart sergery. They offered him a newly invented valve never tested before on humans, my father ( with balls made of brass ) on the table said to the doctors "only if I get a royalty on it" and for 2 hours they had my father on a table negociating the royalty structure.
Dammit to the doctors that think they can screw around with peoples lives and take everything for free. I'm not ( I hope most readers also ) a test subject, unless I truely believe that my sacrafice will pay off in helping mankind otherwise pay me and pay me real good.
Onepoint
spambait e-mail
my web site artistcorner.tv hip-hop news
please help me make it better
Re:That's not what they mean by "unique." (Score:2)
http://www.unl.edu/wglider/biofacts/hela.html
Re:That's a good point. (Score:1)
I wholly agree with you on the lawyer/manager point. Unfortunately, though, it will always be true that people who do the grunt work get paid far less than the people supervising them. In this case, however, all the people who do grunt work have PhDs.
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Re:see? (Score:2)
This is the meaning and intent of the code-phrase "fiduciary responsibility".
Re:Ownership and taking samples (Score:2)
--
Re:Baaad analogy (Score:1)
The discoveries could be made with consent as well. Why don't they just ask? what is the harm?
Isn't this... (Score:1)
'nuff saqid.
Ok that's it... (Score:1)
I figure this way I can charge my HMO royalty fees when I visit a doctor and pull a Rambus and sue any company that tries to sell anything based on the human body.
Figure that way I can make my bid to single handedly stop the entire medical community though the use of Copy Write Infringment Lawsuits.
"Hey that's a direct violation of my patent.. on me!"
Cheers!
-Liq
Re:That's not what they mean by "unique." (Score:2)
Incidentally, uniqueness is how evolution works. Every trait that any of us possess started out as a unique mutation in one individual. As we continue to evolve, nothing is preventing one of us from developing a new mutation of one of our current genes. If this is a beneficial mutation to the one person, chances are it will be beneficial to most people.
Granted, the beneficial mutation I speak of is most likely to be a point mutation (a single DNA letter switched to some other letter) leaving the mutated gene similar in sequence to what the rest of humanity has. It is unlikely that scientists would be able to take the original gene and figure out what to change to make a beneficial mutation. Therefore, the mutation does belong to the person, and the person should receive money if it is used by some biomed company. I think the day will come when scientists will just figure out beneficial mutations on their own.
I don't think you meant that (Score:3)
Perhaps what is meant that they can take the sample and patent unique chemicals/cells found in it.
Startling difference!
Re:That's not what they mean by "unique." (Score:2)
I only said I "wanted my cut" as a figure of speech. But since it's also partially true, let me explain a little bit more clearly.
If somebody makes lots of money off of something that came from my body, then I'd like my fair share. If they want to release their findings into the public domain, then that's allright by me, I don't even care about credit. In this case, I wouldn't ask for anything, especially not money.
And you say I'm being a bit selfish? Well, isn't this hypothetical doctor that patents something selfish? Isn't the lawyer who helps that doctor patent it selfish? Or should we all just give away everything we think up freely? Would that make you happy?
I wouldn't mind it. But since it isn't going to happen soon, I choose to "play the game".
And they're not playing by the rules. I don't care *how* ubiquitous the molecule they find in my sample is. They want to use my sample, they either pay for it or release all their findings to public domain. Now, you might think, "well, fine, they'll just get another sample". True enough, it could happen. But if this practise were made widely known, how many patients would start loosing trust in their doctors? How many people would start demanding the same thing I want? If you're going to make unreasonable profit off something(which a patent would imply), then you get to share that profit with those who helped you make it. If you want to release whatever you find to the public, for the benefit of humanity at large, then no problem, would you like a kidney?
The point I'm trying to make is that there is a fairly decent chance that someone's biopsy is going to be used to make a discovery, and that that discovery will be patented. After that, there's a fairly good chance that that patent will be abused. Legally or not, I don't give a crap. If they abuse their discovery, which my sample helped make, I'll get pissed about it.
So I'm not saying this is a bad practice; I can imagine the hoops the doctors would have to jump through to get samples otherwise. But what I *am* saying is that if some of these doctors are nothing but profiteering opportunists, then they arn't allowed to take advantage of me and my body. Simple as that.
Dave
Barclay family motto:
Aut agere aut mori.
(Either action or death.)
Attention Shoppers: Special Today -- Iceland's DNA (Score:2)
I'm surprised no one yet has mentioned the case of the governement of Iceland selling the genetic information of its citizens [grain.org]. Iceland was chosen because of its long history of testing and because its population is small and very genetically homogenous. An "opt-out" scheme is included, so you don't HAVE to give away your genetic information. I believe many were convinced that they were making a contribution to mankind since this will be a very valuable database for tracing genes responsible for, for instance, hereditary diseases. But as this CNN article on the same topic [cnn.com] points out:
************************************************ ** *
Re:The dilemma would be... (Score:1)
Point well taken. I would run into problems if i were in a band. Is the music I make mine or everyones? (My answer: everyones) There are some artist who consider their music no longer theirs when it gets released to the public. They give it to that public domain chick.
I would buy the music from the artist rather than copying it. I usually support bands by going to their shows, buying a shirt, and possible their album.
"If nature has made any one thing less susceptible than all others of exclusive property, it is the action of the thinking power called an idea, which an individual may exclusively possess as long as he keeps it to himself; but the moment it is divulged, it forces itself into the possession of everyone, and the receiver cannot dispossess himself of it. Its peculiar character, too, is that no one possesses the less, because every other possesses the whole of it. He who receives an idea from me, receives instruction himself without lessening mine; as he who lights his taper at mine, receives light without darkening me. That ideas should freely spread from one to another over the globe, for the moral and mutual instruction of man, and improvement of his condition, seems to have been peculiarly and benevolently designed by nature, when she made them, like fire, expansible over all space, without lessening their density at any point, and like the air in which we breathe, move, and have our physical being, incapable of confinement or exclusive appropriation. Inventions then cannot, in nature, be a subject of property." - Thomas Jefferson
Re:take my body (Score:1)
Re:That's not what they mean by "unique." (Score:1)
U.S. Constitution, Article I, Section 8.
http://www.law.cornell.edu/constitution/constituti on.articlei.html#science%20and%20useful%20arts
Re:That's a good point. (Score:1)
But, strangely enough, they expected to be paid.
Strangely enough, they don't base their bill on the amount of money I will earn at my new location, or the amount of money I save by moving, or the value of my stock options. They bill on the basis of the compensation they want for moving my stuff from one place to another. If I become rich as a result of my move, they aren't going to come back to my door asking for their cut of my profits.
As I said elsewhere, if people as a group refuse to donate tissue to medical research, it will only hurt society by driving up research costs and making some research impossible. The people who are getting rich are doing so on the basis of business dealings; they perform much the same functions as they would if they were in some other industry. Tissue samples aren't what makes them rich; it's the success they have in operating a business.
I like taking pictures. Some of my pictures look pretty good, if I do say so myself. Someday, maybe I'll enter a picture in a contest. If that picture happens to be of a person, I would be well-advised to have them sign a consent form that gives me the legal right to use their image for my own business purposes. If they sign that form, they have no legal or ethical right to demand a cut from any profit I make from that photograph, as long as it is within the ordinary terms of the agreement. The same is true of actors, or anyone else who creates something that is then used by someone else.
If you drive to the lottery office and win the jackpot, or perform honest work and earn a promotion, do you expect the automaker to knock on your door asking for his share of your bonus? "It was our car that got you there; how about 10% of what you got?"
Re:Ownership and taking samples (Score:2)
Actually, the government thinks it owns your body. It says what you can and cannot put into it (narcotics laws), and can order you to sacrifice it if it suits their interests (conscription), and to work to support them (taxation). The church only thinks it owns your soul.
Both organizations are dedicated to the destruction of independant thought and action. Fortunately, we have corporations to defend that.
Research is necessary to our survival (Score:1)
If you want a really useful issue, try finding a way for us rich and healthy slobs to subsidize medicines and treatments for the third world.
HIPAA - Details, Dates, Summaries (Score:1)
An interesting note from one of the sites below: "With the 1996 passage of HIPAA, Congress was granted 36 months to pass privacy legislation. In the event Congress failed to meet this deadline, HIPAA authorized DHHS to promulgate final regulations to protect patient privacy. DHHS published a NPRM for individually identifiable health information on November 3, 1999. After reviewing more than 50,000 comments, DHHS published the final regulations on December 28, 2000." The regulations are on hold because the Bush Administration put a stay on all regulations from the last two months of the Clinton Administration.
Good resources for more information include http://www.smed.com/hipaa/ [smed.com] from Siemens and http://www.hipaa-iq.com/ [hipaa-iq.com] from QuadraMed.
If you want to read the final regulations themselves or get information from the Department of Health and Human Services, you can go to http://aspe.os.dhhs.gov/admnsimp/ [dhhs.gov].
-- fencepost
i own my body (Score:2)
Re:Organ/Blood/Tissue Donation (Score:1)
take my body (Score:1)
Pretty typical patent nonsense (Score:1)
Right now we also have a legal battle going on wrt the use of cheap alternatives to expensive patented anti-AIDS medications. On the one hand we have very poor countries desperately trying to save or at least extend the lives of millions of infected people and on the other we have rich drug companies who don't care as long as they make their billions of dollars.
Re:"Unique chemicals/cells" (Score:4)
Mr. Moore had a rare type of "hairy" leukemia. The doctors who diagnosed it asked him to sign a "consent form" so that they could study the disease and (potentially) make money from it.
Mr. Moore refused consent.
"By accident," some of Mr. Moore's tumor sample was stored anyway, and research on those samples resulted in lucrative biomed development.
When this happened, the researchers realized that Mr. Moore had actually refused consent, and being utterly stupid people with balls of purest brass, they called him up and said, "hey, this discovery we made off of your cancer without your permission turns out to be worth billions. Are you sure you won't reconsider that consent thing?" Mr. Moore sued.
Mr. Moore eventually LOST the case. Many excuses have been given. One of the most popular was that the tissue was disease, and not part of Mr. Moore's body, thus he had no property right to it once it had been removed for surgical/diagnostic purposes (and the surgical consent form from the hospital no doubt gave the researchers "rights" to the tissue). Another is that the profit didn't come from Mr. Moore's tumor, but only from original developments created from research based on tumor specimens, thus the original source of the tumor had no claim to cash. All of these excuses, and I'll show my bias again here, are crap.
The HIPAA (medical data privacy) regulations will hopefully stimulate more active consenting of patient/subjects for things like this. The insurance industry is lobbying heavily right now to defeat HIPAA, and the Shrub (yeah, more bias) is listening, since HIPAA fell into the "last minute" acts from SuperBill. Hope that the moneygrubbers who deny people necessary care to protect the bottom line don't also get to deny those people the basic right to be ASKED what happens to their sensitive medical information, or the assorted stuff that gets removed from them.
OT PS - Most of the "cooperative group" cancer studies funded by the NIH now include, as a condition of entry (and this is important, as clinical trial participation is effectively the standard of care for many cancers), that subjects give the sponsor (the cooperative group or drug company) blood samples and tumor specimens "for unspecified future research." More frightening - they've recently started to ask for not just the pound of flesh, but also the linkage files which tie that tissue to the original owner. Data and tissue privacy nightmare. Quite against the current federal regulations against asking subjects to waive or appear to waive any rights (which I had assumed included property rights to their tissue). Our tax dollars at work, folks. For the benefit of whichever GlaxoPfizerLillyGenentechCo. shouts "IP!" first.
Sorry for the long rant, but thought I had some pertinent info. to contribute.
The way I understand this.. (Score:1)
But say they find a new disease in you body, say, buttrottalotism, the doctor can patent it, and get say a Nobel prize, while you don't get a thing, but hopefully a cure.
tissue brokers, including sperm (Score:2)
brokers who make tens of thousands of dollars
recycling human corpse tissue. The most popular
tissue is collagen for plastic surgery. Demand
for this is such that burn hospitals have problems
getting enough cadaver skin. There have been
occasional deceptions to families and individuals
donating cadavers, i.e under the guise of medical
research.
US sperm banks do a booming international business.
Many customers like the image of Americans they
see in the media and want children like that.
Fetal tissue is the next big market for marrow
tranplants for cancer and
and nerve tissue transplants for Parkinsons.
Medical research may manufacture these in clone
tissue factories, but aren't that far along yet.
Why do the majority seem only interested in money? (Score:2)
Why the hell are so few people concerned about the fact that they are *SELLING* all of these "sought-after" medicines to people who CANNOT AFFORD THEM because of all the bullshit treatments they've paid for?
"They would have no incentive" to create these medicines, the article has said, if they couldn't make money off of them. What the fuck is this? Here's an incentive: YOUR FUCKING CHILDREN. Nothing pisses me off like people that say they want to "help humanity" and "fight disease" and then turn around and sell the work they do for shitloads of money, or who start mass-producing this medicine and charging 100-200x the production costs. NOTHING has a higher markup than the Biotech industry, with the possible exception of Nike shoes.
Re:Why do the majority seem only interested in mon (Score:1)
Ownership and taking samples (Score:2)
To address the question in the subject of the original /. post: IANAL but as I understand English law, you specifically do not own your body. Some precedence was set in a court a long time ago. Apparently the argument was along the line that since your body is give to you freely by God, you cannot own it. Interesting. In any case: you don't own your body in the sense of property right.
You do seem to have the "right of first use" :-), so to speak, in almost all cases except where you are dead or insane. So doctors shouldn't be chopping you into pieces without your knowledge and selling the bits to the highest bidder.
Which is excatly what they have been doing here in the UK. Tissue samples were "donated" to pharmacutical companies in return for monetary donations to the hospital (and, presumably?, the consultant's pet research projects).
This recently caused a bit of an uproar here. It followed the, eh, inappropriate treatment of dead bodies (you really shouldn't just keep them in a heap on the floor in an un-cooled room that happened to be spare, and if you do, then you should never let a photographer in -- as usual the worst sin is to be caught).
I don't think I want to know what they are doing to my (OK, not my) body anymore....
God owns you (Score:1)
Re:That's not what they mean by "unique." (Score:4)
Several hundred people have a medical condition. They have blood or tissue samples taken and offer their consent to have the samples used for research. Researchers then collect data from those hundreds of samples, and spend years of 80 hour weeks and millions of dollars to draw conclusions about what is causing the problem. Pharmaceutical researchers then spend more years and hundreds of millions of dollars coming up with a therapy.
And you people think it's unfair that the people who contributed tissue samples don't collect royalties? They're getting a treatment for their condition -- or the satisfaction that at least someone else won't suffer as they have. They've made the same contribution to research as lab animals or the seaweed used to make agarose - my mice have contributed far more to my findings and have made a genuine sacrifice. If anyone is entitled to royalties, it's them.
Some random thoughts:
Random observation (Score:1)
Immortalizing cell lines, growing them up, running expt.'s, and then expanding the results to almost all cells of the same type is pretty common these days (with some reservations). But it just struck me as funny that we're taking results from what are basically cancer cells and applying them to healthy cells that can be found in a tissue/organ. Yes, I realize that often there's only one or two differences between the immortalized and normal cells....but what if that difference is in a cell-cycle control that does many other things, too (c-Mos, for example)?
By the way, at this point I'm actually curious and hoping people will post some answer...is there any way to control for just how wacked-out immortalized cells are? How do you make sure that whatever factor makes them immortalized isn't interfering with the work you're doing?
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That's a good point. (Score:1)
However, would you really want to restrict research on something that could help everyone just because you want a patent on your own tissue? That would mean all labs that want to work with the tissue would have to pay you some sort of fee on top of the already hugely expensive cost of chemicals. Just yesterday I paid $200 for WATER from a supply company (given, it was 18L of guaranteed protease-, RNAse-, and DNAse-free water).
The point made in later posts that, "If they're going to patent anyway, I want my cut" has to be addressed, too. Imagine this situation: when you give a biopsy, all you do is sit back and let them cut a little piece out of you. The scientist that uses the tissue for research then spends the next 10 years analyzing some undiscovered property of all human cells that he found in your biopsy. Whe the scientist finally feels he has enough to publish, he tries to patent his amazing discovery (let's leave the issue of whether or not patenting the discovery is right alone for now). What many people are saying on this forum is that, even though all they did was let someone take a chunk of them, they want a cut of the profits. Even though they had nothing to do with the 10 years of 40-80 hour work weeks, they want their hard-earned money, damn it! To me, that sounds like some greedy get-rich-quick scheme. Rewarding someone for for doing nothing at the expense of a researcher's life work just feels wrong.
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Patent Me (Score:1)
Re:That's not what they mean by "unique." (Score:2)
From reading that article, it seems that there are quite a few cases where that's simply untrue. Once the tissue samples leave your control (almost instantly, according to today's laws), biotech companies can do anything they want with them. They don't have to treat you. They don't have to offer you the drugs at anything approaching an affordable price. Take the example of the people on Tristan da Cunha who probably will never be able to afford the drugs that their unique genes created.
Of course the companies paid for the research... But a diamond-mining company pays for the cost of digging up and polishing the stones. That doesn't mean you have no right to a portion of the (not inconsiderable) profits, if you own the mine. (Before anyone responds with a treatise on diamond mining, it's just an off-the-top-of-my-head example. Please feel free to substitute a more appropriate one.)
The worst thing about the current system, is that if people ever do wake up to their lack-of-rights on a grand scale, it could lead to large numbers of people "sequestering" their genes. Religious groups, for instance, might kick off the trend, as there are many who probably find this to be a frightening possibility (with some good reason.) Society as a whole would suffer as a result.
Re:That's not what they mean by "unique." (Score:3)
Allow me to clarify this rumor. I believe you are refering to HeLa [atcc.org] cells. HeLa cells were originally derived from a cervical adenocarcinoma, and are one of the older cell lines still being used, going back all the way to 1951.
HeLa cells are known to be fast and aggressive in their growth, and I seem to remember that they are somewhat resistant to desiccation. So when they contaminate another cell culture, they usually end up taking over. Back in in the 50's, cell culture techniques weren't very advanced, so the cell lines that HeLa ended up replacing were propagated down through the years without it being noticed, until it was finally spotted with modern genetic techniques.
Re:And? (Score:1)
That, and the medicines you talk about are RARELY distributed and used in mass quantities because *gasp* THEY'D HAVE TO SELL THEM FOR LESS IF THEY MADE MORE.
You aren't helping to "better humanity" by charging out the ass for the cure.
That's like saying Microsoft is "bettering the software industry" by charging more money for its OSes.
Oh, or how about the RIAA is helping to "better music" by helping to set the price of a CD at $20?
Two words (Score:1)
What about "prior art?" (Score:1)
How on earth can you patent something that already exist?
If the cells are in my body... isn't that "prior art".
Doesn't the PTO understand the difference between a discovery and an invention?
--Phillup
Re:Organ/Blood/Tissue Donation (Score:1)
You just said that the only thing stopping the Biomeds from, essentially, stealing organs is religious conscience.
But you won't give blood because the only "incentive" is conscience and wanting to, oh, I dunno, help the FUCKING KID THAT WAS HIT BY A MAC TRUCK LAST WEEK? You know why the Red Cross wants to know when those 6 months are up? Because there isn't enough god-damned blood to go around to all the people that need it. The kids that are hit by drunk drivers, cancer patients, AIDS patients...
And even the mothers who are in the hospital giving birth, who happen to have an artery rupture. Yes, look at your children and then imagine children somewhere that don't have a mother because your no-good, worthless ass didn't fucking give blood.
Sucks, don't it? (Score:3)
If being patented bothers you, I strongly encourage you to refuse to consent to any kind of research on your own tissue. We can't force you to sign. Even if you're going in for surgery and we put a tissue claim on the consent form, we *have* to remove that clause if you demand it (or send you to another doctor, which is a lot harder/costlier). In fact, you could probably demand that a consent clause stating that the tissue will *not* be used for research. This situation ain't gonna change until unethical behavior suddenly turns unprofitable, and that'll require active consumerism.
Also of note is that the USPTO, in its recent release of new rules on gene patents, claimed that it couldn't do a damn thing about the patentability of human genes. According to that esteemed institution, Congress has given it a mandate to grant patents on anything that a person makes and brings in. Therefore, if it's the idea of someone taking ownership of part of humanity that bothers you, drop an email to your congressthing asking for a law to declare humanity off-limits.
I dislike scaremongering books, but if it brings this chunk of IP law back to sensibility, I'm willing to tolerate this one.
Re:That's not what they mean by "unique." (Score:2)
Absolutely. The review and I would guess, having read Dorothy Nelkin's stuff before, the book confuse consent with issues of fairness. There is no question that informed consent is required, although medical ethicists argue about exactly what that involves. But you have the absolute right to veto any involvement of yourself in research, and cases where that was violated are illegal and unethical. The question is whether giving consent under existing practices is a fair bargain.
They don't have to treat you. They don't have to offer you the drugs at anything approaching an affordable price. Take the example of the people on Tristan da Cunha who probably will never be able to afford the drugs that their unique genes created.
Well, somebody has to benefit - otherwise how would how would the results be worth any money?
Know what? Patients love us. When you tell sick people that you're trying to turn their suffering into a treatment they don't ask us whether we're going to make money from it, how much it will cost or what share of the profits they're demanding. They want a world where there's a cure for their condition and they're happy to contribute.
As a rule, corporate researchers offer compensation to their study populations - usually medicine or a new clinic. I know nothing about the Tristan da Cunha case, and can't say anything about the fairness of that particular project.
wh0 0wnz j00? (Score:1)
Re:That's not what they mean by "unique." (Score:2)
Therefore, scientists aren't trying to find extra-special bits of you to *steal* (as the article and first few posts seem to suggest). All they're trying to do is save a little money by skipping the costs of figuring out legal language for a consent form, etc. Whatever is biopsied from you is only used in the capacity of representing human cells, not your own.
I'll bet the patients didn't get to enjoy any of those savings (otherwise, they'd have known in advance what was going on). Lets see, take a biopsy from me, charge me for the procedure, make a million from the results of the procedure. Why should I pay someone to use my tissue to make a million dollars? The LEAST they could do is use part of that to cover my treatment!!! It's a little thing called gratitude.
Patent Enforcability (Long) (Score:1)
Patenting an actual gene (unless, like the ones monsanto wants to patent, it has been modified) is possible but not ENFORCABLE. You can force anyone else who wants to use the gene to go through an expensive legal hurdle (which is Monsanto's actual tactic with the whole gene patenting thing) but you can't actually stop them unless the gene represents an invention in even the most loosely defined sense.
For example, my family has a patent on using artificial eggs to deliver fat soluble nutrients (this isn't a gene but it's the same law.) Does this apply to actual, natural eggs? No. Is it an enforcable patent? Yes. Some guy in australia tried to patent any mixture of anything used to deliver carotenoids; this patent, while he does have it, is not enforcable.
So, yeah, they could patent your genes, and get squat. They could patent a laboratory-modified form of your gene, and that would probably stick. They could patent the *innovation* of *cloning* your gene into some other organism, and that, absurd as it is, will stick. They don't own your gene, they just own the innovation of using it transgenically; and their patent will *probably* only stick, however they worded the application, to someone else trying to clone the gene for the same, and I know judges don't know genetics from deer shit, "purpose."
All of this is totally seperate from the question of biopharmaceutical patents - the *vast* majority of genetic type patents are, and will continue to be, agricultural. You're not going to see heavy medical genetic patenting until some fool convinces some other fools to start injecting people with "therepeutic" retroviruses; which is a VERY VERY STUPID (TM) thing to do.
shandelm@cats.ucsc.edu
pimp (Score:1)
So Create Your Own License (Score:3)
I - Should research leading to a profitable enterprise stem from discoveries made by examining Weston's tissue (whether the sole tissue examined or one of many samples), Weston shall be entitled to no less than 5% of the profits.
II - Should any such discoveries be patentable, Weston will be considered a co-holder of the patent, with power to freely license the patent for use by any third party.
III - The provisions in this agreement supercede provisions made in any other agreement. Should another agreement's provisions conflict, the provisions in this document will take precedence.
IV - Enforceability, govenered in Utah, void in Arkansas, blah, blah, blah...
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That's not what they mean by "unique." (Score:5)
It's not as if they're patenting chemicals/cells that can only be found in *you*. Things like that would be next to useless, since the only person that could possibly use discoveries related to the "unique" thing would be yourself.
In this context, they're referring to chemicals/cells that haven't been discovered yet. These things are probably ubiquitous molecules (present in every other human being) that no one has looked for yet.
Therefore, scientists aren't trying to find extra-special bits of you to *steal* (as the article and first few posts seem to suggest). All they're trying to do is save a little money by skipping the costs of figuring out legal language for a consent form, etc. Whatever is biopsied from you is only used in the capacity of representing human cells, not your own.
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see? (Score:2)
Right now, you and I have no idea what some profit-driven corporation will come up with next to screw us over.
Re:Why do the majority seem only interested in mon (Score:3)
Hello?
Re: What? Only 5% profit? Take on the GROSS, man.. (Score:2)
--
WOS: The Source Code of Life (Score:2)
Re:I wanna GPL my DNA (Score:2)
Of course, researchers probably won't have a lot of legal room to manoeuver in (in all likelihood, they just have standard consent forms), in which case, it's up to us to lobby your representative/congresscritter/duly elected scumbag to give them that room, or make copyleft standard conditions of consent.
Re:That's not what they mean by "unique." (Score:2)
The only problem with this is that the patient also has to pay the bills for the medical treatment (or at least the insurance company that the patient uses). So the medical/research field is getting something for nothing. If the doctor/researcher would care to foot some of the bill (or the researchers) when they take the tissues and work on them, then I think it would be a little more equal.