Slashdot Mirror
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.
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 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:
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.
---
4-star general in a one-man army.