Have you ever consented to medical experiments?

[Skywalker]

Following my MRI, I got a letter asking if I would consent to some experimental testing they are developing. They tossed around words like, "head restraints", "eye pressure" and "high accelerations", not to mention "radiation". They stressed that side effects were "RARE!", but of course they included, blindness, paralysis, deafness, etc. etc. And this machine has only been tested on 10 people so far! 10! Well of course freaking side effects are rare, it has only been tested on 10 people!!!! And for all of this they are offering the whopping compensation of $20.00! Plus the added bonus of being given medical care if the tests harm me. Well, thanks!

My husband told me to call and ask them if they forgot a zero or two on the end of that figure. I mean, gee, weighing the options here...paralysis/20 bucks, blindness/20 bucks...hmmmm...tough one.

So has anyone ever participated in trials like this? Was the money better? Or did you just do it for the betterment of medicine because if you ever have, you are a better person than me.

 

[Towncrier]

I used to volunteer for MRI scans where I work whenever the paid volunteers didn't show up. I am surprised that radiation would have anything to do with an MRI scanner. The only radiation that I am aware of is the radio waves that your body emits whenever the magnetic field changes direction.

But I agree that $20 doesn't seem like a lot of compensation (although it is $20 more than I was offered).

 

[VSL]

I always thought that medical experiments and psychology experiments were really for students - who desperately need the money

 

[AllyandJack]

I volunteered to be part of a study for a new treatment for a tumor I had in my jaw. I really didn't have a choice since the regular treatment was unacceptable to me - it involved severing a facial nerve, causing numbness - possibly for life, requiring speech therapy and occupational therapy to learn how to live without use of my lower lip, not to mention having to go back to the doctor every week for 6 months to have my jaw packed with anti-bacterial gauze. So, I went for the study. Best thing I ever did.

As compensation, I got out of my co-payments ($20.00 each visit) and, when my insurance changed and my doctor didn't accept it, I got discounted visits. Now that my new insurance covers the doctor, I'm back to free co-payments. I have about 4 years left before I'm "cured" (10 years before they'll say it's probably not growing back).

So, I got some financial reward out of it, but the alternative to NOT being a part of the study was worse than anything the study could cause.

 

[dcentity2000]

i have a condition that is known, amongst other things, as treatment resistant. I consented to a trial combination between drugs. Thankfully, it worked



Rich::

 

[buckylarue]

When I had my heart attack, I was asked if I would consent to have a new type of stent installed in my artery (coated with an anti-rejection drug to make it meld with my tissue better). I said OK, and it has been fine, and the FDA approved it a few months later.

My partner has been on some clinical trials; some have been helpful, some have not, but that's what happens...

 

[Stitchfans]

I would be too frightened to test anything. No way would I chance it, and especially not for a mere $20.

 

[Stacerita]

I personally have not, but the sweetpea has been involved with "trials" for asthma and allergy medications. She has done a few over the years. Mostly it involved medications that were already on the market for adults but haven't been used widely by children yet. The side effects were nothing that were a cause for concern so thats why she agreed to them, with my consent of course. One of them was for Singulair (sp?). She actually did so well with the medication that its now part of her daily meds. And for the "trials" that she did participate in, she was paid very well. Much more than $20, thats for sure.

 

[goofygirl]

I work in the field of medical research/clinical trials and the biggest misconception that people have about research is that people are treated like "ginuea pigs."

Trials and "experimental medicine" is VERY involved and monitored closely. Trials require a lot of different approvals and consents. Subjects have to be monitored closely and every detail is documented. People are treated very well, and its rare that anything really bad happens.

 

[Aidensmom]

I took part in a study for a new drug once. I experienced some unexpected side effects, though the drug was working well for what it was supposed to treat, and was therefore asked to stop participating. I would feel secure doing one again knowing that you are not expected to continue if the drug in any way appears to be harmful to you. (And I was told that my experience actually provided a lot of insight on how the drug dosage might affect someone as small as me, so at least I did help.)

 

[phamton]

Yes, I have. I did one for a new antibiotic for sinus infection. (Cleared me right up.) The last one I did was for smallpox vaccine. My husband did one for eczema. One of my daughters did one for pain medication and had her impacted wisdom teeth extracted for no charge and was paid over $1000 to take a new pain medication. Unfortunately she got the placebo.

 

[Bashful2]

My 2 DDs are in a clinical trial for a new HPV vaccine. The study will last 3 years, they get 3 shots and multiple PAPs. The total payment at the end of the study will be $500. They get $50 each visit.

They actually started it for the money. Now, they're excited to be part of something that will save so many lives. So far, the trial has been very successful.

 

[Free4Life11]

I almost did a study to test a new drug for heart patients. It would have paid me $6000, BUT I'd have to live at the "facility" for 21 days...could not leave! Additionally they would do over 60 blood draws, do EKG's (??) in the middle of the night AND I'd be on a 1200 calorie diet! Come to think of it, I'd probably have lost a ton of weight LOL! Sadly, I passed out during the screening when they were doing a "clotting test" so I wasn't able to participate.

 

[jfulcer]

The only radiation that I am aware of is the radio waves that your body emits whenever the magnetic field changes direction.

I don't worry about those radio waves escaping or the radio waves from the government getting into my head since I started wearing that tinfoil hat. It makes me feel much safer.

 

[JennyMominRI]

When I had my heart attack, I was asked if I would consent to have a new type of stent installed in my artery (coated with an anti-rejection drug to make it meld with my tissue better). I said OK, and it has been fine, and the FDA approved it a few months later.

My partner has been on some clinical trials; some have been helpful, some have not, but that's what happens...

Yes,Id say people like you and I are permanant guinnea pigs

 

[barkley]

we have a family friend who suffered from terrible epilepsy all of her life. when the type of brain surgery that involves "killing off" the part of the brain that causes the seizures was in it's infancy she opted to go for it. she was asked if she would be willing to commit to having her entire case history and the remainder of her life medicaly documented for research purposes. she opted to do so hoping that whatever she experienced would aide in further development of treatments for the disease (and she has done remarkably well). another friend is one of the oldest surviving male cystic fibrosis patients in the u.s.-he has volunteered for experimental drug treaments that have proven tremendously successful.

 

[luvmarypoppins]

One of the ds got to try an asthma drug a little before they put it on the market, I have now taken him off of it and I did something for a new kind of cast they were trying to develop. I dont think it turned out too well. No compensation except for getting out of the mounds of plaster I was in and doing something with plastic once.

 

[Skywalker]

I am surprised that radiation would have anything to do with an MRI scanner.

Hi Towncrier. Just to clarify, the test itself will not be anything to do with the MRI at this point. These tests are a different method of testing for similar problems, it is the same doctor (neurologist) that is working on these new procedures.

This particular test would only be a one-time thing, and though I think there is no way it would benefit me personally, I suppose it might down the road lead to something beneficial for someone else. Maybe or maybe not. But $20.00 is crazy, heck it will not even cover parking in Toronto never mind my time, involvement and risk. Sheesh!

Again, I do commend those of you that are willing!

 

[cardaway]

I was a test subject for the first years of my life. Since I wasn't expected to live I was given some pretty "radical" treaments which obviously kept me alive. They now keep others alive that have the same blood disease.