Subjecting Yourself to Experimental Meds 348
ghostlibrary writes "Even while NIH is getting new ethics regs,
patientINFORM is being evangelized
as a way for ordinary citizens to look up experimental treatment online, in essence circumventing their doctor, and the FDA long ago tacitly approved this. /. debated Wikis in hospital. RSI fans track risky or untested procedures from the Typing Injury FAQ and Health-Hack
covers IT-related self-help medicine. Laser-eye stuff is now mainstream and doesn't need a check beyond google. Any other sites out there for those willing to dictate their own medical course? Does this mean Internet users will become test subjects more than the usual college students and elderly?"
Can you dictate the treament to your doctor? (Score:3, Informative)
On the news in England [bbc.co.uk]: a man afflicted with a degenerative brain condition has won a court ruling last year that will force doctors to give him water and food even if he cannot ask for it possibly a reaction to the then-ongoing Schiavo case in the US. Doctors are protesting that this "undamentally altered the nature of doctor / patient relationships and was not in the best interests of the patient."
I have not read the ruling, but I think it should be self-evident that if this guy wants to be sustained even when he can't ask for it, this should be done.
Doctors claim the ruling means they "would have to provide treatment which they knew would be of no benefit or could even be harmful", which is why I am making the post here. Indeed patients should not be able to force any particular doctor to give them treatment that, in his judgement, is medically unnecceary. Of course, they should be free to find a doctor who agrees with their choice of treatment. Of course, this can be bad for them, as the heading story points out, but it is their problem.
That said, I fail to see how giving someone food and water can be "harmful". It may be "of no benefit" only to the extent that the person's life is of no benefit, which is not for the doctor to judge especially when the patient has spoken on the matter.
Re:WTF on the challenges? (Score:3, Informative)
It took me a while to figure out that you were referring to:
from the evangelized [libraryjournal.com] link in the original story.To address your question, I think at least one site lost information in paraphrasing. APS states "While this outcome arguably could be defeated by reliance on FOIA Exemption Four, 5 U.S.C. [section] 552(b)(4)...". And the FOIA [usdoj.gov] shows that this exemption is "trade secrets and commercial or financial information obtained from a person and privileged or confidential". However, this does not mean that this information cannot be published (as far as I can tell - IANAL), merely that it doesn't have to be published. However, I think that the previously mentioned link has misrepresented the APS position on this. (I'm not saying I agree with the APS, merely that I don't believe they are using the FOIA to justify blocking the information, merely saying that the FOIA does not forbid blocking the information.)
Similar: I did it, it was fun and weird (Pharmaco) (Score:2, Informative)
It wasn't too bad: I've described it before as a mix of summer camp, hospital, insane asylum, and low-security prison. (These last three, I guess could be usefully combined.)
The biggest problem is that I failed to think as I should have about hydration: you need to drink enough water if you're going to have a fair amount of liquid extracted through holes in your arms; at one point, after various unsuccessful stabs at my arms, the doctor (who was a bit arrogant and standoffish, but certainly not terrible) gave me a shunt, so I didn't have to get stuck any more, and advised me to drink water so I'd have more to give, so to speak.
I got more schoolwork done there than I probably did on any other weekends, which was good, because that's not something I was winning any awards for. The food was bland but edible; the only thing I didn't eat was the mayo-containing coleslaw. Entertainment was scarce -- pool, television, a bank of phones -- but there was a computer room, and I brought books.
It's regimented and strange -- but for a couple of weekends, I got iirc $600, and an understanding of the place / system, and I don't regret it. Maybe I'll do it again sometime, out of interest / curiosity at how it's changed in the last decade than anything else.
timothy
p.s. There are lots of rumors about the studies there, including the fabled "heart stopper" where they give you $40,000 to stop and then re-start your heart. Likewise, the "lose a toe" one, where they amputate a toe to test some anti-bleeding drug. I dunno about the veracity of either, but I know when I laughingly told my brother about the heart-stopping one, he paused and asked "Really? 40 thousand?" very thoughtfully.
Re:New Test subjects? (Score:3, Informative)
The CDC Tuskegee experiment [whale.to]
1955 - Army Chemical Corps continues LSD research, studying its potential use as a chemical incapacitating agent. More than 1,000 Americans participate in the tests, which continue until 1958. 1955 - The CIA, in an experiment to test its ability to infect human populations with biological agents, releases a bacteria withdrawn from the Army's biological warfare arsenal over Tampa Bay, Fl. 1953 - Joint Army-Navy-CIA experiments are conducted in which tens of thousands of people in New York and San Francisco are exposed to the airborne germs Serratia marcescens and Bacillus glogigii. 1953 - CIA initiates Project MKULTRA. This is an eleven year research program designed to produce and test drugs and biological agents that would be used for mind control and behavior modification. Six of the subprojects involved testing the agents on unwitting human beings. 1953 - U.S. military releases clouds of zinc cadmium sulfide gas over Winnipeg, St. Louis, Minneapolis, Fort Wayne, the Monocacy River Valley in Maryland, and Leesburg, Virginia. Their intent is to determine how efficiently they could disperse chemical agents. 1953 UK. NAZI scientists were involved in the nerve gas research that led to the 'suspicious' deaths of at least 25 ex-servicemen at the top secret Porton Down base. [Media] British nerve gas death tests 'had Nazi scientists' 1951 - Department of Defense begins open air tests using disease-producing bacteria and viruses. Tests last through 1969 and there is concern that people in the surrounding areas have been exposed. 1950 - Department of Defense begins plans to detonate nuclear weapons in desert areas and monitor downwind residents for medical problems and mortality rates. 1950 - I n an experiment to determine how susceptible an American city would be to biological attack, the U.S. Navy sprays a cloud of bacteria from ships over San Franciso. Monitoring devices are situated throughout the city in order to test the extent of infection. Many residents become ill with pneumonia-like symptoms. 1947 - Colonel E.E. Kirkpatrick of the U.S. Atomic Energy Comission issues a secret document (Document 07075001, January 8, 1947) stating that the agency will begin administering intravenous doses of radioactive substances to human subjects. 1947 - The CIA begins its study of LSD as a potential weapon for use by American intelligence. Human subjects (both civilian and military) are used with and without their knowledge. 1946 - Patients in VA hospitals are used as guinea pigs for medical experiments. In order to allay suspicions, the order is given to change the word "experiments" to "investigations" or "observations" whenever reporting a medical study performed in one of the nation's veteran's hospitals. 1945 - Project Paperclip is initiated. The U.S. State Department, Army intelligence, and the CIA recruit Nazi scientists and offer them immunity and secret identities in exchange for work on top secret government projects in the United States. 1944 - U.S. Navy uses human subjects to test gas masks and clothing. Individuals were locked in a gas chamber and exposed to mustard gas and lewisite. 1943 - In response to Japan's full-scale germ warfare program, the U.S. begins research on biological weapons at Fort Detrick, MD. 1942 - Chemical Warfare Services begins mustard gas experiments on approximately 4,000 servicemen. The experiments continue until 1945 and made use of Seventh Day Adventists who chose to become human guinea pigs rather than serve on active duty. 1945 - "Program F" is implemented by the U.S. Atomic Energy Commission (AEC). This is the most extensive U.S. study of the health effects of fluoride, which was the key chemical component in atomic bomb production. One of the most toxic chemicals known to man, fluoride, it is found, causes marked adverse effects to the central nervous system but much of the information is squelched in the name of na
OT: A little editorial advice (Score:5, Informative)
Here is the original article:
Let me suggest this as a better rewrite:
I think this is a bit clearer. A general word of advice -- try to put what an article is about in the first clause of the first sentence if possible
Re:Health misinformation can be very dangerous. (Score:3, Informative)
Re:sentence 1: wtf (Score:3, Informative)
I actually went through the effort [slashdot.org] of reorganizing the article so it makes sense, but got down-modded for my trouble. Which goes to show that no good deed goes unpunished.
Re:Its your life (Score:3, Informative)
Likewise it is true that PCP was pioneered as an anesthetic, but it was never very useful and has been supplanted by ketamine, which as you pointed out is related, but is clinically superior. Therefore PCP has no medicinal value given that ketamine is available, in much the same way heroin is not useful given that morphine is available.
I don't necessarily endorse the original poster's opinion, in fact I'm skeptical. I think this thread points to why: people are very apt to jump to unwarranted conclusions. Cocaine was once used as an anesthetic, therefore crack is potentially medically useful. PCP is similar to ketamine chemically and pharmacologically, therefore it can be used the same way. Heroin is converted to morphine in the brain, so it can be used like morphine. None of these statements logically follow, but they're sure to convince somebody who sufficiently wants to believe.
If you make the argument from a purely philosophically libertarian viewpoint, I suppose it can't be argued with. If the government has no position in protecting people from their own stupidity, then so be it. However in that case, allowing people to muck around with powerful drugs is not something that you do to promote health and physical well being, it's a matter of liberty.