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Who Owns Your Body?
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.
I'll take what you say as true.
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.)
Barclay family motto:
Aut agere aut mori.
(Either action or death.)
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.
I've put a little note on my id saying that I'm happy to be an organ donor. My logic is that if I can help someone else after I'm dead, why not.
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.
As *another* one of those researchers, I have to say that concerns over these things *are* very real and worthwhile.
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.
I am amused by the ironic mispelling of "retarded" and and the inappropriate hyphenation of "mentally ill."
Sure, the doctors aren't rich. But the companies hiring them are. The guy at Amazon who actually developed the 1-click ordering system probably isn't rich either, nor the one who did the HTML, or the one who did the back-end systems. But Bezos...
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.
You make it sound like there are two players in this. One is the hard-working, long-suffering doctor and the other is the fat, lazy, greedy patient. The patient is saved from his laziness by the benevolent doctor who merely asks for the ability to keep saving these ungrateful slobs...
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.
Ok then, take the samples from yourself.
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.
Henrietta Lacks, they named the cells from the first two letters of each name, thus HeLa.
http://www.unl.edu/wglider/biofacts/hela.html
profit-driven is fine and dandy. We all like to make a buck. But when, as a motivation for behavior, it becomes the SOLE factor, with no regard for ethics (other than fear of "getting busted") or human decency - long term, it's basically a bad thing for everyone on the planet.
This is the meaning and intent of the code-phrase "fiduciary responsibility".
These are my friends, See how they glisten. See this one shine, how he smiles in the light.
So if your body was freely given to you by God, does that mean the Church can sue for proprty theft instead?
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The only thing necessary for the triumph of evil is for good men to do nothing. - Edmund Burke
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.
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.
Perhaps what is meant that they can take the sample and patent unique chemicals/cells found in it.
Startling difference!
-bugg
Please read my post more carefully, as well :)
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.)
Barclay family motto:
Aut agere aut mori.
(Either action or death.)
I'm surprised no one yet has mentioned the case of the governement of Iceland selling the genetic information of its citizens. 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 points out:
************************************************ ** *
Being bitter is drinking poison and hoping someone else will die
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.
i own my body, thank you very much. until i sell it for sex, of course.
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.
Eloi are stupid, throw morlocks at them!
Several of the newsmagazine shows mention tissue
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.
I notice that a large majority of the posts concerning this topic are all about "I don't mind if they make money off of me," or "I want to get my money out of it if they're selling these things based off of me."
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.
This signature does not exist. It has never existed. It is all a figment of your imagination.
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....
Hi!
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:
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.
Allow me to clarify this rumor. I believe you are refering to HeLa 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.
It's worth clarifying that not *every* doctor is out to take your genes. Most doctors are too busy trying to survive managed care, and don't have a clue that this is happening. However, as with everything, there are a few people whose ethics went out the window as soon as they smelled money. There are even large chunks of the medical profession which publically oppose genetic patenting; both the American College of Pathologists and the American College of Medical Genetics say it's immoral. The AMA is working on a statement (it's "concerned"), and the American Medical Student Association might publically oppose it just as soon as I get around to finishing up the statement that says they do.
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.
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.
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.
PURPOSE: This document specifies the conditions under which tissue (or any other issue) taken from Weston may be used.
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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Tweet, tweet.
OK, first off, that's a horribly worded reference to the article. It makes it sound as if doctors are taking the biopsies themselves with out permission. What's really going on is that doctors need to take some tissue anyway to do some test for a disease; and then they're done, rather than just throwing the rest of the tissue away they pass it on to other scientists that need to work with the same kind of tissue.
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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4-star general in a one-man army.
Yeah, and when I post comments on articles about human cloning, you all call me a luddite, and say that I shouldn't worry, that we're all protected from weird abuses.
Right now, you and I have no idea what some profit-driven corporation will come up with next to screw us over.
These are my friends, See how they glisten. See this one shine, how he smiles in the light.
Well, since we know R&D is totally free...those bastards!
Hello?
120 characters isn't enough to explain it.
You only want 5% profit? I think you should try and claim 20% profit. If you're going to go with numbers like 5%, do it on the gross take of every sale. Don't doubt that's what the BioCorps would do.
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Libertarianism is rich wolves and poor sheep playing gambler's ruin for dinner.
Benny Härlin of Greenpeace speaks about GMOs (Genetically Modified Organisms) and there patentability. A 1/2 hour 45kbit realvideo film archived at ova.zkm.de: play film
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.