We live in a University city. This has many advantages; it is very beautiful, there are plenty of interesting stuff to do and see, a big teaching hospital, lots of green space and funky cafes. There are also lots of people doing research into all manner of stuff. I can't move for being asked to participate in one study or another. In fact, some researchers looking for participants for their study into new mothers and their perception of body image were the first visitors I had after I had Adam. It was probably a little excessive, I was pretty woozy and a bit fuzzy after a long and fairly traumatic birth and not really up to giving any sensible answers; How did I feel about my body? Er it's pretty shot to bits and needed some more sleep thanks.*
But I'm being mean, some of the studies have been quite fun. There was the one about how children play with adults at different stages of their development which involved going to rooms with lots of new toys for an afternoon. Then there was the one about language development in toddlers which I found fascinating.
Now a new request. We've just been asked if Luke would be able to participate in a new trial for a Meningitis B vaccine. Now, I'm a big fan of vaccinations (read my rant about those who choose not to vaccinate their children on my previous blog here) and both my boys are fully jabbed up with every available jab going. As routine in the UK, this includes Meningitis C, but at present there is no vaccine for Meningitis B, which causes 90% of meningococcal disease in the UK. The researchers are hoping that the MenB vaccine will be as effective at reducing cases of the disease as teh MenC vaccine has been.
The trial vaccine is 'investigational' meaning that they have been approved for use in the study but are not yet licensed for routine use. It isn't the first time the vaccine has been trialled, an earlier study looked at vaccines given to infants. What the study is really after is to monitor the effectiveness of the vaccinations, would it work better given to infants or as part of the jabs the children receive at 3 1/2.
In theory, I should be all for it. Signing him right up. A vaccine for this disease would be a really positive step forward. I've participated in vaccinations trials before, I'm fully innoculated against rabies (and got paid £70 for the priviledge) which was fantastically useful in those times when I was still rushing around the world. But that was my decision, my body. I could read about the risks, weigh them out, balance them up and if there was going to be any side effects, well that would be my problem too. But in this case, if there are any side effects, it isn't going to be me who suffers them. There are a number of side effects reported by the study so far, including fever, convulsions, chest infections, hearing loss and an incident of Kawaskaki's disease, but on the other hand if you read the potential side effects of asprin you'd never take another headache pill again. But, but but. How awful would I feel if my little boy was one of the unlucky ones who developed one of these side effects. Then again, how stupid would I feel if he went on to contract Men B?
So I'm in a quandry. One the one hand a desire to be a good citizen and to contribute to what I believe is a good thing for society. On the other just preferring that someone else did it for me. I'm intrigued to know though, what would you do if it was your child?
*It wasn't actually as bad as that, they did let me get home before the visit when they asked a gazzilion quesions. But it felt a bit like that at the time.
Oh I don't know. Hugely difficult. I agree with you about the need for vaccinations totally but this is still quite worrying because you don't know what you're letting yourself in for - or more importantly your child.
ReplyDeleteWhen I was a student they were always asking for people to go and catch colds or do sleep studies(yay - I'd totally do one of those now) but then there was that awful case a few years back where it all went horrendously wrong.
I don't know. I'm no help am I?
Easy for me, big fat no. There are far too many what ifs.
ReplyDeleteMy son has had all the necessary jabs, and more, but I would never make him do something like this.
I understand that these trials are important, but I would definitely take the cowards way and leave it to someone else.
I wouldn't, but I think I have a different attitude to vaccinations to you - a little more suspicious.
ReplyDeleteYou could ask to see some more statistics, if you feel inclined. I know what you mean about never taking another headache pill, but millions and millions of people take those medications and the risk rate is tiny. What would worry me about this, is that they've got these side effects reported, but the sample must be relatively small. It must be hundreds, or thousands, rather than millions. You could work out what % of children have been affected, and it might help you make your decision. For me, if there's a decimal point and a few zeros after it, that's one thing. But if it's even 1%, I think that's way too high a risk.
The other thing to think about is timing. Just suppose, just suppose, just suppose you do end up dealing with side effects and all the investigations and treatments those would involve, is this a good time to be doing that? Haven't you got a busy few weeks ahead of you?
Let us know what you decide, won't you?
This probably isn't helpful but if it were me I wouldn't do it. My gut feeling instantly says no, never. The clinical trials that went wrong at Northwich Park Hospital have put me off for life. I just wouldn't take the risk.
ReplyDeleteThis is a really tough one - I agree with you about vaccines, they are hugely beneficial. But to trial one?
ReplyDeleteI'd follow Iota's advice - ask for more information regarding percentages. If there is anywhere near even 1% I'd say 'hell no!'.
Actually, I'd just say 'hell no!' anyway - no way would I let my kids be subjected to trial vaccines - I'd do it myself, but I'd never put a child of mine to such unnecessary risk. I know that's hypocritical - as in if someone doesn't volunteer their child then the study can't go ahead and the nobody can benefit from the vaccine, but it's a risk I couldn't take.
This is, however a really interesting subject - I'd be interested to hear from somebody who would let their child into a vaccine study.
I can see what you mean about being a good citizen, but I lean more towards your thoughts that it's one thing to put yourself through a trial, but quite another to subject your child to it. I'm afraid I would probably give it a miss and feel very guilty about doing so.
ReplyDeleteI would have serious doubts about doing it. Having said, I asked The Doctor what he thought, and he said that he would do it, as 'the risks would be low, and it's very important that these things are done, otherwise we are all in the dark'. (Whether or not I'd let him though, would be a different matter...)
ReplyDeleteAnd there you have the quandary all parents face. Read the warnings and inserts on all vaccines...approved or not, and you see why parents struggle with this everyday. As my pediatrician explained it to me when when I first brought my baby to him. "Will he be ok if he get's the shots?...probably. Will he be ok if he doesn't get the shots...probably." It was the most honest and surprising answer I ever got from a doctor.
ReplyDeleteReally interesting and really tricky. I honestly don't know. My dad has participated in various clinical trials for his Parkinsons and always been fine, but, but, but....as you say, it's his body, and he's hoping for a cure, if not for him, for someone like him. And honestly they pretty much can't make him worse.
ReplyDeleteHere you're making the decision for Luke, and that's what makes it harder. I sort of think if you trust them enough that you would do it yourself, then you probably can go ahead. Whether I would trust them is a different matter, but like Iota I'd want a lot more information first.
Will be really interested to know what you decide.
And on a lighter note - when I was expecting L and planning (aka hoping for!) an intervention and drug free delivery, the BBC approached me to see if I'd like to give birth on camera.
Funnily enough I turned them down, but a girl I met in my post natal classes didn't. Nothing so weird as watching someone you know give birth on prime time telly.... Very very glad it wasn't me.
I think I'd say no too.
ReplyDeleteThis is really interesting and the comments are too. I think I wouldn't subject my boys to it in the trial stages, but I would give it to them once it was past this stage. Hypocritical of me - yes. Maxi was immunosuppressed and have no specific antibodies so had every childhood and some adult imms again from being 2 years old, so I am more than aware of the need to vaccinate.
ReplyDeleteIf it was me, then yes I would, but my children are my most precious things and even though I want a vaccine, I would not be willing to risk their lived. Sad but true
Thanks everyone for your comments. It is really fascinating to read your views. I'm also really intrigued that no one is prepared to say that they would participate.
ReplyDeleteI'm still pondering. I have a few more questions to ask them, and I will let you know what we decide.
This is such an interesting post, really well thought through.
ReplyDeleteLike you, I'm a fully paid up member of the jabs club. My boys were innoculated against everything going, including having a BCG at 6 weeks (we lived in an area with a high TB rate), and swine flu (i have one child with a heart problem) etc etc.
But I know I'd feel so conflicted if I was asked to participate in a trial, for all the reasons you have set out. Actually my eldest wouldn't be allowed because of his heart issue. But the younger one would be ok...and that would cause me an issue. I don't think I would put one through a trial and not the other.
But I 'doubt' I'd be able to bring myself to do it anyway, although I'd be so disappointed in myself. Our children are innoculated against all kinds of awful diseases because OTHER parents DID put their kids through trials. So, in effect, I'm prepared to let other parents take the risk for the benefit of my child. Urgh, it's not great when you write it down like that. Makes me feel very shallow.
Hmmm. Interesting. x
It brings up the interesting question: who are the faces of vaccines that we use today and of those that were not approved due to safety/side effects(yikes!)? Thank you for the interesting dialog...
ReplyDeleteLaura, HappyHomemakerUK.blogspot.com
Very interesting. I am also in the vaccines camp, with my two's jabs right up to date. But these are ones that have been tested, and are given to thousands of children every week, so we can be fairly confident they are safe in the long run.
ReplyDeleteIf it was me, I would want to know more about the statistics of the side-effects, and also the absolute risk of contracting Men B and the risk of serious complications from that. Then I'd compare the two.
I might even ask to read what has been published so far about the vaccine, the preliminary results, the components of the vaccine.
And I think I'd also want to ask the researchers if they have tested it on their kids!
Sorry, not much help!
Disclaimer, I work for the pharmaceutical industry. There are generally three stages of trials for new drugs or medications, phase I (first in human, which tests just safety), phase II, for early efficacy studies, and phase III the so called pivotal trials which have enough people in them to give statistical significance and are what decides whether or not a drug or vaccine is approved.
ReplyDeleteI wouldn't put myself or my child in a phase I/first in human trial, and probably not a phase II either.
However if the trial is a phase III I would consider it. Things to find out about are how many people have taken the vaccine already, doeshas it been shown to offer protection, and if any of those reported adverse effects are thought to be related to the vaccine. Any medical event that occurs during a clinical trial is reported as an adverse event, it may or may not be treatment related. If you got hit by a falling tree during the trial that would be listed as a potential side effect. All this information should be available and they usually have very good counselors associated with these trials.
So, in closing, I think it is a very personal decision, and it is a very generous act to volunteer, expecially to volunteer children. But meningitis is a terrible disease, Geekydaddy has a friend who lost his legs and fingers to it. If it is a phase III trial I would volunteer my kids. In fact I may look to see if a trial is recruiting in my area. Great post, thanks