Human guinea pig
September 25, 2006 10:38 AM Subscribe
I'm thinking of volunteering for a drug trial at Guy's Drug Research Unit in London -- it's the one run by this company that's been advertising in all the free papers recently. It's testing a new flu vaccine, and a quick chat with them tells me that I'll get around £3,000 for taking part. My question is, 'elephant men' aside, what's the real story?
I came to AskMe because I figured that maybe someone here would have gone through this, whether from the participants' side or the experimenters'. I get the feeling that the risks are very small, but that being experimented on could be quite unpleasant altogether, and that there's a lot of stuff that you probably wouldn't know about this unless you'd seen it first hand.
I came to AskMe because I figured that maybe someone here would have gone through this, whether from the participants' side or the experimenters'. I get the feeling that the risks are very small, but that being experimented on could be quite unpleasant altogether, and that there's a lot of stuff that you probably wouldn't know about this unless you'd seen it first hand.
There were many excellent answers to my similar previous question. I decided not to pursue it.
posted by Alylex at 11:08 AM on September 25, 2006
posted by Alylex at 11:08 AM on September 25, 2006
“I feel like I’ve given away my life for £2,000.”
Yeah, but that extra 1,000 quid really changes the whole risk reward calculation.
On the one hand, this makes me think of that sheep-man at the research hospital scene in "O Lucky Man"; on the other hand, Robert Rodriguez partially financed his first feature that way and it worked out pretty well for him.
Depends how much you need the money, I guess.
posted by timeistight at 11:12 AM on September 25, 2006
Yeah, but that extra 1,000 quid really changes the whole risk reward calculation.
On the one hand, this makes me think of that sheep-man at the research hospital scene in "O Lucky Man"; on the other hand, Robert Rodriguez partially financed his first feature that way and it worked out pretty well for him.
Depends how much you need the money, I guess.
posted by timeistight at 11:12 AM on September 25, 2006
I got a few hundred dollars to be a guinea pig for a smallpox study. Everything went great! I got some cash, I got a cool scar and I'm immune to smallpox!
They're probably trying to be a bit more careful since that whole swolen head incident; you'll probably be fine.
posted by thirteenkiller at 11:36 AM on September 25, 2006
They're probably trying to be a bit more careful since that whole swolen head incident; you'll probably be fine.
posted by thirteenkiller at 11:36 AM on September 25, 2006
I would only assume the higher the pay-out, the higher the risk. I did a study for allergy medication when I was younger and was compensated with the prescription fees waived and a few years later when I was in my teens the same company contacted my mother about an experimental allergy shot with the pay-out of about $100/shot, two shots a week. My mother passed on the invitation and later found out that the shots had caused extremely intense seizures in about 75% of the guinea pigs.
posted by banannafish at 11:47 AM on September 25, 2006
posted by banannafish at 11:47 AM on September 25, 2006
I participate in quite a lot of clinical research as a paid volunteer, including one or 2 clinical trials of new drugs, and I'm astonished at how much they're paying for this study. I'm in the US, and maybe things are different in the UK, but over here they're not allowed to offer so much money that it becomes an irresistable enticement. The only studies that involve such large amounts of money involve major hassles, like living in the clinic 24/7 for a few weeks or months. Or unpleasantness, like tissue biopsies or other uncomfortable procedures.
As far as risk, I read the study protocols, talk to the people running it, and form my own opinion as to whether it's worth it. In the US, human experiments require informed consent, and you will get a copy of the study protocol written in language that an intelligent layman can understand. It's also required for a study director to go over this form with you, and make sure you understand what you're volunteering for before you sign the consent form. I'm sure it's much the same in the UK. I'm reasonably knowledgeable about biomedical research and I trust my own judgement about the study - and I always err on the side of caution if I'm a little uncomfortable about the risks.
As I said, we aren't enticed with large amounts of dough for just a few needle sticks, so it's usually the hassle factor that would make me turn down a lucrative study. As far as I've seen, the amount of money does not rise dramatically for higher-risk studies (only for higher-hassle studies). You have to decide for yourself what your risk-tolerance is, but the study directors will have lots of preclinical data from animal studies and they should be happy to tell you about possible risks and side-effects. I've never seen any director be less than forthcoming (and downright enthusiastic) about discussing the study, but if they were, that would send me away in a hurry.
As far as the actual experience, it naturally depends on the study. It might be as little as a shot of vaccine, then come back in a few days for the flu challenge (often a nasal spray), then phone in every day to report how you're feeling. That doesn't sound like it's worth 3000 pounds, though, so there's probably more involved. You might have to spend a few weeks in the hospital, there might be lung tissue biopsies involved (there's got to be something unpleasant to justify all that dough!), or other stuff. Call 'em up and ask why they're paying so much - they'll have to disclose any nasty details before you consent to participate anyway, and it's more convenient for everyone to weed out no-shows over the phone.
Clinical trials can be rather undignified and hard on your sense of privacy. They usually require frequent blood draws (sometimes multiple times in one day). You might hang around a clinic all day with a butterfly needle taped into a vein, or have to drag an IV pole into the bathroom with you, or collect your urine at home and leave the jug in the bathroom for the delight of your roommates then shlep it back to the clinic on the bus, or get saline poured into your sinus cavities then snorf it out into a plastic pan, or walk around town with bandages or pads taped to various parts of you. If you're sensitive to that sort of thing, you might not like the experience. Your social life might also not fit with this (imagine dragging your faithful jug of pee with you on a date!).
But if you're not afraid of needles, you don't take your own dignity too seriously, and you enjoy the slightly geeky atmosphere of research hospitals, you might enjoy it. I turn down about 1/2 of the studies I inquire about, but I like the idea of contributing to biomedical research (yay! I'm a data point!) and I sometimes learn useful, if depressing, things about my physiology. (In the US, with your permission, these data can be transferred to your ordinary medical records.) It can be an easy way to make some money, depending on the study, but you definitely need to ask about the protocol and find out why they're paying so much. Don't take any risks you're not comfortable with - there will always be another study.
posted by Quietgal at 12:15 PM on September 25, 2006
As far as risk, I read the study protocols, talk to the people running it, and form my own opinion as to whether it's worth it. In the US, human experiments require informed consent, and you will get a copy of the study protocol written in language that an intelligent layman can understand. It's also required for a study director to go over this form with you, and make sure you understand what you're volunteering for before you sign the consent form. I'm sure it's much the same in the UK. I'm reasonably knowledgeable about biomedical research and I trust my own judgement about the study - and I always err on the side of caution if I'm a little uncomfortable about the risks.
As I said, we aren't enticed with large amounts of dough for just a few needle sticks, so it's usually the hassle factor that would make me turn down a lucrative study. As far as I've seen, the amount of money does not rise dramatically for higher-risk studies (only for higher-hassle studies). You have to decide for yourself what your risk-tolerance is, but the study directors will have lots of preclinical data from animal studies and they should be happy to tell you about possible risks and side-effects. I've never seen any director be less than forthcoming (and downright enthusiastic) about discussing the study, but if they were, that would send me away in a hurry.
As far as the actual experience, it naturally depends on the study. It might be as little as a shot of vaccine, then come back in a few days for the flu challenge (often a nasal spray), then phone in every day to report how you're feeling. That doesn't sound like it's worth 3000 pounds, though, so there's probably more involved. You might have to spend a few weeks in the hospital, there might be lung tissue biopsies involved (there's got to be something unpleasant to justify all that dough!), or other stuff. Call 'em up and ask why they're paying so much - they'll have to disclose any nasty details before you consent to participate anyway, and it's more convenient for everyone to weed out no-shows over the phone.
Clinical trials can be rather undignified and hard on your sense of privacy. They usually require frequent blood draws (sometimes multiple times in one day). You might hang around a clinic all day with a butterfly needle taped into a vein, or have to drag an IV pole into the bathroom with you, or collect your urine at home and leave the jug in the bathroom for the delight of your roommates then shlep it back to the clinic on the bus, or get saline poured into your sinus cavities then snorf it out into a plastic pan, or walk around town with bandages or pads taped to various parts of you. If you're sensitive to that sort of thing, you might not like the experience. Your social life might also not fit with this (imagine dragging your faithful jug of pee with you on a date!).
But if you're not afraid of needles, you don't take your own dignity too seriously, and you enjoy the slightly geeky atmosphere of research hospitals, you might enjoy it. I turn down about 1/2 of the studies I inquire about, but I like the idea of contributing to biomedical research (yay! I'm a data point!) and I sometimes learn useful, if depressing, things about my physiology. (In the US, with your permission, these data can be transferred to your ordinary medical records.) It can be an easy way to make some money, depending on the study, but you definitely need to ask about the protocol and find out why they're paying so much. Don't take any risks you're not comfortable with - there will always be another study.
posted by Quietgal at 12:15 PM on September 25, 2006
Response by poster: living in the clinic 24/7 for a few weeks
Yeah, you live there for just over a week on this one. Should've mentioned that I guess.
posted by reklaw at 1:09 PM on September 25, 2006
Yeah, you live there for just over a week on this one. Should've mentioned that I guess.
posted by reklaw at 1:09 PM on September 25, 2006
Someone I knew did this at university - he said that after a few days it was obvious he'd got a placebo, since whoever had got the test drug was being violently ill. That is probably the best you can hope for.
posted by criticalbill at 1:36 PM on September 25, 2006
posted by criticalbill at 1:36 PM on September 25, 2006
I have a friend who did this every summer that he was at university - he had no ill effects on any occasion and has no regrets at all.
posted by patricio at 1:53 PM on September 25, 2006
posted by patricio at 1:53 PM on September 25, 2006
I did this some years ago, not in Guy's but in a special facility in Borough. I had to stay in the place for a couple of days, during which time they took blood through a cannula every hour or so, then I had to call in every morning for a blood test on the way to work, for the rest of the week.
If you could take the needles, it was fine.
No negative effects. They were testing the half-life (or whatever the term is for drug breakdown) of an antidepressant whichmade me mildly sleepy.
The only interesting thing is you were told not to take any kind of drugs, meds, not drink alcohol etc. and I got in trouble, just like on that episode of Seinfeld, for eating food with poppy seeds in it. Traces of opiates turned up in one of the blood tests.
posted by AmbroseChapel at 2:32 PM on September 25, 2006
If you could take the needles, it was fine.
No negative effects. They were testing the half-life (or whatever the term is for drug breakdown) of an antidepressant whichmade me mildly sleepy.
The only interesting thing is you were told not to take any kind of drugs, meds, not drink alcohol etc. and I got in trouble, just like on that episode of Seinfeld, for eating food with poppy seeds in it. Traces of opiates turned up in one of the blood tests.
posted by AmbroseChapel at 2:32 PM on September 25, 2006
>the higher the pay-out, the higher the risk
The situation at the moment probably means payouts are very high indeed, just because of the bad publicity and the fact that volunteers will be hard to come by.
posted by AmbroseChapel at 2:35 PM on September 25, 2006
The situation at the moment probably means payouts are very high indeed, just because of the bad publicity and the fact that volunteers will be hard to come by.
posted by AmbroseChapel at 2:35 PM on September 25, 2006
The situation at the moment probably means payouts are very high indeed, just because of the bad publicity and the fact that volunteers will be hard to come by.
I heard - but cannot find any corroboration now - that in actual fact after the elephant men incident the number of volunteers rose - a sort of no such thing as bad publicity thing, perhaps, if its true.
posted by criticalbill at 2:47 PM on September 25, 2006
I heard - but cannot find any corroboration now - that in actual fact after the elephant men incident the number of volunteers rose - a sort of no such thing as bad publicity thing, perhaps, if its true.
posted by criticalbill at 2:47 PM on September 25, 2006
Another guinea pig here. I was in a methadone test for a month that required an 8 hour stay once a week for AU$400.
It was fine. I talked to them about it, the risks weren't bad at all, and the inconvenience was nothing I couldn't put up with.
Just read up on it, talk to people about it, and make a decision. No one's trying to trick you here, it's up to you to decide if it's worth it.
posted by twirlypen at 4:22 PM on September 25, 2006
It was fine. I talked to them about it, the risks weren't bad at all, and the inconvenience was nothing I couldn't put up with.
Just read up on it, talk to people about it, and make a decision. No one's trying to trick you here, it's up to you to decide if it's worth it.
posted by twirlypen at 4:22 PM on September 25, 2006
The situation at the moment probably means payouts are very high indeed
My experience is a little out of date, but when I was in the UK (1997-2001) the standard rate was 100+ pounds per day, if you were required to stay overnight in the clinic. There were plenty of stories of travellers/students spending up to a month in the clinic, and walking away with well over 3000 pounds. So, given inflation etc, this doesn't seem like an excessive payment.
I took part in several asthma trials - mostly for a few hours at a time, over several weeks; once overnight. I experienced no problems at all, they were very professionally run. The main risk with a long trial would appear to be boredom/being stuck in the clinic and unable to go anywhere.
However, I was trialling drugs that had already been approved for human use - the researchers were trying to demonstrate that the drugs were better than other drugs on the market, in order to qualify them for National Health Service subsidies. YMMV if involved in earlier stage research, I guess.
But remember, there are a huge number of trials conducted each year. I would argue that the fact that we all heard so much about this one trial that went wrong indicates that the risks are actually very low.
posted by Infinite Jest at 4:41 PM on September 25, 2006
My experience is a little out of date, but when I was in the UK (1997-2001) the standard rate was 100+ pounds per day, if you were required to stay overnight in the clinic. There were plenty of stories of travellers/students spending up to a month in the clinic, and walking away with well over 3000 pounds. So, given inflation etc, this doesn't seem like an excessive payment.
I took part in several asthma trials - mostly for a few hours at a time, over several weeks; once overnight. I experienced no problems at all, they were very professionally run. The main risk with a long trial would appear to be boredom/being stuck in the clinic and unable to go anywhere.
However, I was trialling drugs that had already been approved for human use - the researchers were trying to demonstrate that the drugs were better than other drugs on the market, in order to qualify them for National Health Service subsidies. YMMV if involved in earlier stage research, I guess.
But remember, there are a huge number of trials conducted each year. I would argue that the fact that we all heard so much about this one trial that went wrong indicates that the risks are actually very low.
posted by Infinite Jest at 4:41 PM on September 25, 2006
The study protocol might tell you what they're actually testing (vaccines are pretty standard; my guess is that they're either trying a new adjuvant or perhaps a new packaging method [one of the big pushes now is to get vaccines that you can ship and store at room temperature or vaccines that can be given without needles]).
Otherwise, ask what the "new thing" is that they're trying.
If it's a new adjuvant or a new way of generating antigen, I'd personally pass (due to the risk of having an inappropriate response to the adjuvant, which activates the immune system, or if the peptide generation was "dirty" - the risk here is the development of autoimmune disease).
If it's a new formulation for shipping/storage/dispensing, I'd probably go for it if I had the time.
Also, is this a phase I, II, or III study? Phase III is usually pretty safe. Phase II... depends. I'd personally pass on a phase I study unless I was terminally ill (or about to lose an organ or something).
Ah, right... the TGN1412 fiasco. I cannot believe anyone thought that a "super"monoclonal CD28 agonist is a good idea...
posted by porpoise at 4:45 PM on September 25, 2006
Otherwise, ask what the "new thing" is that they're trying.
If it's a new adjuvant or a new way of generating antigen, I'd personally pass (due to the risk of having an inappropriate response to the adjuvant, which activates the immune system, or if the peptide generation was "dirty" - the risk here is the development of autoimmune disease).
If it's a new formulation for shipping/storage/dispensing, I'd probably go for it if I had the time.
Also, is this a phase I, II, or III study? Phase III is usually pretty safe. Phase II... depends. I'd personally pass on a phase I study unless I was terminally ill (or about to lose an organ or something).
Ah, right... the TGN1412 fiasco. I cannot believe anyone thought that a "super"monoclonal CD28 agonist is a good idea...
posted by porpoise at 4:45 PM on September 25, 2006
I've done it. The big issue for me was boredom, although the digs were pretty posh: big screen tvs in the lounges, computers, books, games, dvds, handheld dvd players, tvs in all the rooms, decent accommodations (with roommates) and a bathroom that intriguingly had to be locked at night.
The sense of isolation for my stay was pretty severe. We weren't allowed to have cell phones with us and I got pretty cagey at times. Also, lack of sleep was an issue with all that blood taking in the middle of the night.
The risk factor and possible side effects were clearly explained before we signed anything, and we could leave at any time (although we forfeited payment if we did so). It was a decent way to make a large amount of money in a small amount of time. My side effect? Diarrhea, and they wouldn't let me take anything for it. But it was still worth it.
On the other hand, this drug had already been tested for side effects; I was a test subject to see how it metabolized.
posted by digitalis at 7:05 PM on September 25, 2006
The sense of isolation for my stay was pretty severe. We weren't allowed to have cell phones with us and I got pretty cagey at times. Also, lack of sleep was an issue with all that blood taking in the middle of the night.
The risk factor and possible side effects were clearly explained before we signed anything, and we could leave at any time (although we forfeited payment if we did so). It was a decent way to make a large amount of money in a small amount of time. My side effect? Diarrhea, and they wouldn't let me take anything for it. But it was still worth it.
On the other hand, this drug had already been tested for side effects; I was a test subject to see how it metabolized.
posted by digitalis at 7:05 PM on September 25, 2006
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“It’s a really bizarre feeling when you discover you might be dead in a couple of years or even in a couple of months,” he said. “I feel like I’ve given away my life for £2,000.”
posted by SirStan at 10:41 AM on September 25, 2006