Brain Donations

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Okay, with a title like "brain donations" you'd think this wasn't going to be a serious thread, but it actually is.

For those who don't really know who I am, I am an autistic Psych major who's wanting to go into research on ASCs. I've been thinking, one of the real drawbacks to doing research on ASCs is a lack of postmortem samples to study. So myself and a neurologist friend of mine (who's already had experience setting up brain banks) are thinking of beginning a Neurodiversity Brain Bank at some point in the future.

The donations will be used strictly for BETTERING the lives and understanding of ASCs. They will be earmarked specifically for research which doesn't focus on cure but understanding-- essentially, figuring out what makes us tic.

This sort of project would be some time off. But right now I'm trying to get a feel for the online autism community and whether they'd like the idea and would be willing to donate. On my own site I've gotten some positive responses so I wanted to try this on a larger community.

What would happen would be you'd be put on a list, your info would be taken (just the basics, race background, any medical conditions, etc.) and once you pass away (hopefully quite a few years from now) your brain will then be removed and preserved and used in the designated pro-neurodiversity research areas.

Right now, one of the "most successful" autism brain banks in the country (which is not neurodiversity-oriented btw) has been open for the last 5 years and only received about 35 brains... which is a very small amount. And those have mostly been child donations I believe.

One bonus of having a NEURODIVERSE brain bank for research which is anti-cure and pro-understanding would be that that kind of research would get a leg-up over the pro-cure research because we'd get most of the brains. And that at least could help turn the fields of research into a more neurodiverse direction as opposed to allowing the parents movement to dictate the funding and hence the research.

Another bonus would be that the research would FINALLY start paying attention to adults, since I'd imagine the vast majority of donations to such a bank would be adults.

So I'm curious: who would be interested in furthering this cause and at some point, if we can bring this neurodiverse brain bank to fruition, sign up for donation?

If you have any questions or worries, feel free to ask here or PM me.

By the way, I'm not trying to procure an actual donations list at the moment (although if you're definitely interested, PM me and I'll give you my email and we can keep in touch). I'm just wanting to get a feel as for general willingness amongst the online community.

Why not?


Did you know that they remove brains during autopsies anyway, and just keep them in jars? Often they don't put other organs back in after the autopsy either; they either incinerate them or dump them hodge-podge back into the cavity and then replace the breastbone.


I wonder where they keep all those brains if this is true! And I read on one site that it was. Secret CIA-funded experiments like that horrible brainwashing thing they were doing years ago that someone later wrote a bestselling book about?

I am already an organ donor,dont think my brain is an organ that they will be needing for transplant ,so you may have it.One thing I would be most interested in,to sweaten the pot for donors,would be throwing in a pre-death MRI or other neurological testing and letting us know the results.I want a picture of my brain for my scrapbook(ok,I dont really have one of those,but I would start one if I had an MRI )

Good luck,I think it's a great idea.

krex, that is something along the lines I've been thinking about actually. If we can get the brain bank off the ground, I would like to do some fMRIs of the participants pre-mortem. Who knows, maybe we could have some sort of related "research participants" bank or something, to study us all while we're alive and well.

But definitely along my line of thought, krex. I'll PM you my email if you'd care to keep in touch.

I definitely will.

(Actually, given the topic of this thread, I'm surprised more people aren't posting... I'd've thought "brain donations" was sensationlist enough, lol.)

This isn't the sort of thing that can be done without resources, though. My impression had been that the reason the current bank is cure-focussed is that that's where the money is, at least in the US. How would you fund it? I've no doubt you could get enough participants, but funding is still key. Could you conceivably afford to do diagnoses on people like myself who are undiagnosed, but pretty sure they have AS, or will you just take those who have diagnoses from other sources? And those MRIs, they don't come cheap either.

I'd sign up, for sure, but only if I was certain there was real money and expertise behind the effort.

[youtube]http://www.youtube.com/watch?v=tjnvAtphBfo[/youtube]

It's definitely an option since brains can't really be transplanted like other organs are. There's a facinating book on this subject, "Stiff. The Curious Lives of Human Cadavers" which does mention brain banking.

Why need real physical brains?
I would think using MRI and/or EEG instead. Get samples from living thinking brains instead of dead ones. After all, it's what our brains are doing when we're alive that makes us autistics or not.
When we're dead I doubt you will recognize an autistic brain from an NT's brain. Just as little you would recognize a genius' brain from that of a moron.

(Just my two cents, without any experience in this field.)

PS I believe you can change the thread title by editing your first post. Works in some message boards as far as I know.

PPS. I just read a few more posts, and I saw that the MRI had already been suggested. Serves me right for jumping to conclusions

ive thought a lot about this as well, sophist... and i don't know a good answer for it

an alternative that i think would work well... (and give some results much sooner!) is to get an fMRI databank going. my new uni has an fMRI and does scans while patients are doing decision-making activities. so you get a 3D pic of the active parts of brains through various tasks and they use subtraction (theoretical approach) to tease apart the different contributions to learning that the brain is making.

ack have to go (im in the lab)......................... bah ill post more later