To think I was experimented on in the 60s?

[itsnotmeitsu]

I realise this is a weird thing to suggest, and society today is very different from then, (although, 'plus les choses changent, plus elles restent les mêmes'), but this has been preying on my mind recently, due to reading an article about brain research being carried out on adults (with their consent) decades ago.

When I was very wrong - early 60s - my sister and I were taken to a Birmingham hospital a few times to have electrodes placed on our skulls, and patterns were recorded. I remember it very well, even though I was only about two, because the whole thing was strange and scary to me. Later, my mum said it was to determine whether we were identical or fraternal twins (we're fraternal), so I know her permission was involved. Now I know there wasn't the access to the science that determines this type of thing today, but in that period would they try and establish twin DNA by measuring brain patterns? I very recently talked to my sister about it and, although she remembered it, she gave a different reason for it happening.

The reason I'm putting it out there is to see if anyone has had the same experience, or knows anything about it, and, if so, what reasons were given for it? Were we experimented on, and was my mum told the truth or lied to? I can't ask my mum any more about it, as she died in 2019.

@Bluewavescrashing - I've never seen 'Stranger Things' and, no I was never put in a water tank :-) (Thank God, I can't swim), but I recently read Stephen King's 'The Institute', and that features a water tank (it's also horribly possible, if you've read it). But I'll now make sure I don't start watching 'Stranger Things', as 'The Institute' traumatised me enough.

If you remember a hospital setting than I would assume it was done in hospital, as many hospitals have links to their local university.
A family member did a PHD recently (not twin studies), and although the PHD was obviuosly awarded by a university, he was physically based in the local teaching hospital - that's where he did his research, where his supervisor's office was etc. He also had many brain scans hinself whilst there, as a subject of other people's research! (Selected due to being nearby, willing, and in possession of a brain).

But if you wanted to look into it more, then research linked to Birmingham university would be a good starting point. It is likely that academics at Birmingham university were responsible for publishing the research, even if it was carried out at the hospital iyswim.

sounds like the kind of thing that was is done to assess epilepsy. and for other reasons too i guess
My dd is epileptic and regularly had this EEG (exactly as OP describes) in the 80s and 90s, to assess any improvements or worsening. I also guess children there were having them for other reasons.

There's a big difference between being experimented on or being part of a research study.

It would be quite unusual for you both to have vivid memories of being two.

My twins are part of a research study in London, my DH and I actively chose for them to be involved.

I was wondering the same thing 😀

@TellingBone

Neurophysiology was a big thing in the 1960s and lots of research was being carried out. Twins would have been of particular interest. Electrical activity in the brain would be measured by use of EEG.

I'd imagine it was a 'study' rather than experimentation.

It would still be extremely unethical to involve babies/ children (or anyone!) in a study without their/ their parents full knowledge and consent.

I very recently talked to my sister about it and, although she remembered it, she gave a different reason for it happening.

What was your sisters reason for it happening?

OP if you were actually involved in a study without your parents consent then you could legally be entitled to compensation. I don't know how you would find out though. Are there any twin studies done around the time you were born in the area you would have lived? You could ask for help finding studies at a university/ hospital library.

I don't think anything suggests mum, or both parents didn't consent. If anything, the opposite.

Why do you keep saying you were 'experimented on' when it was obviously just research being carried out?
What reason did your sister give?

Describing this as being "experimented on" is a gross exaggeration.

Children have electrodes put on them all the time for lots of reasons - monitoring etc. I dont see why it's any more scary than part of medical practise from vaccinations to the regular ECGs or MRIs many children undergo.

"Experimenting" is when you try out something on someone and do not know whether it could seriously impact them. Using electrodes to gather data doesnt do any harm other than the child being a bit confused or bothered.

Twin studies are very useful in gathering medical data on heritability.

I'm not a twin but I had that done to me in a Birmingham hospital when I was a child. I was told it was because I had headaches, I've had migraines since I was 4.

Can people please stop telling op off for the terminology she’s using. She was 2 and this was her scary reality. I agree with Schrodinger though about changing the terminology to make it less freaky.

EEGs are really common in kids. Both of mine had one before the age of 3, DS has had more since. If you have multiple febrile convulsions (which are also really common) as a child you will be tested. It's not inherently traumatic (and believe me weve been through some inherently traumatic and painful tests with DS), if you dont make it a big deal it really shouldn't need to be.

Just a sideways thought but are you sure it wasnt as a result of a febrile convulsion. You wouldn't remember and given you had no issues since your mum might not have wanted to worry you.

I can kind of understand op using the word experimentation in her op but several people have pointed out it would have been a study and she continues to call it experimentation - it's rather odd.

"Experimented on" is good clickbait though. Definitely had me opening the thread to see what it was about.

This happened to me in the 60s and I have no idea why. Was it a rubbery net like hat with electrodes attached to a machine to test brainwaves. I remember being told when to open and when to close my eyes. I also seem to remember something like salt water being dabbed on my head. I was not in hospital for anything connected to my brain,

You may have been part of an research experiment, but you and your twin were not being experimented on - sounds like you were passively providing whatever data they needed.

does your sister remember it as being scary.
you seem to feel aggrieved that something was done to you that you found scary. sorry you have that memory.
but that was obviously not the intention of the exercise, probably your mother did not realise it would affect you like that.
we all have memories from childhood that were unpleasant or frightening at the time, but that's life; it's impossible to be insulated from all negative experiences or feelings.
by describing it as experimented on, you may be magnifying its negative influence in your memory.

I'm sorry you had this frightening experience.

You should contact the university or hospital and find out what research you were involved in.

The ethics committee of the university involved may be able to help or point you in the direction of someone who could. Also, the librarian at your local university library might be willing to help. There will have been an academic (or academics) carrying out research at that time and they will have published. If you know the university connected with the research, it wouldn't be difficult to work out which study you were involved with.

I think it is highly unlikely that anything untoward was happening, but still, you shouldn't have been involved if it was scary for you.

You ask in your op whether your mum was told the truth or lied to, what do you think she was lied to about?

And to those getting at the OP for using the word experimented on - just stop it. Everyone knows what she means by experiement - it's what scientists do. We can't all know the finer details of participating in research and being experimented on. It's not helpful.

@NoIDontWatchLoveIsland

Describing this as being "experimented on" is a gross exaggeration.

Children have electrodes put on them all the time for lots of reasons - monitoring etc. I dont see why it's any more scary than part of medical practise from vaccinations to the regular ECGs or MRIs many children undergo.

"Experimenting" is when you try out something on someone and do not know whether it could seriously impact them. Using electrodes to gather data doesnt do any harm other than the child being a bit confused or bothered.

Twin studies are very useful in gathering medical data on heritability.

That. Even in the 60s, experimenting on human beings in that way simply wasn't allowed. Having an EEG is simply a monitoring/data collecting exercise. It doesn't do anything to the brain, so it isn't an experiment. Any more than having one's heart monitored is an experiment.

My own daughter had an EEG aged 2. The late 80s when she had hers, were kinder and more empathetic times compared to the 60s, it has to be said. So i can imagine that your experience was more scary than hers. But you do need to let go of the idea that you were 'experimented on' because you really weren't. Nothing would have been done to you to see what happened. No risks were taken with you. Readings were taken, that's all.

You weren’t experimented on @itsnotmeitsu You and your sister were examined. There’s a difference.

@itallworkedouthorribly we're not 'getting at' OP. We're pointing out that what seems to worry her about this, almost certainly didn't happen. And that seeing it that way is unhealthy for her.

If she can start to see the research as scientists gathering data in a non-intrusive and risk-free way, maybe she can see that a) she was in no danger b) that no-one was being reckless and c) that actually she made a contribution to the welfare of children coming after her.