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December 3, 2012 / neurograce

Brain Donation: Removing the stigma in order to advance the science

According to 2012 National Donor Registration Report Card, 101.4 million people in the US are registered organ, eye, and tissue donors. With nearly one third of Americans exhibiting such bodily generosity, we don’t seem to have a cultural problem with the notion of tissue donation. But your standard, back-of-the-driver’s-license donation commitment doesn’t cover what happens to your brain after you die. And the number of people who do seek out a specific brain donation plan is much, much smaller.

The reasons behind this “brain drain” are probably varied. For one, since we don’t have any Frankenstein-esque brain transplant technology (yet!), brain donations don’t have a direct ability to save lives. Thus, they provide less of a feel-good incentive for participants. Also, the organizations that collect brains for medical research aren’t highly publicized. So, many people simply don’t realize it’s an option, or that they have to make a separate commitment for it. But there is also the special nature of the brain that I am inclined to believe makes brain donation a uniquely difficult concept for the general public to sign on to. Most people don’t feel a strong connection between their sense of self and their left kidney. But not so with the brain. The notion of the seat of your consciousness being cut out, shipped to a lab, and treated like any other growth on a petri dish creates some understandable discomfort. We want to believe that our identity is somehow more resilient than that, that it can’t (or at least shouldn’t) simply be dissected.

But the fact is that no matter your philosophical or religious beliefs, that three pound mass of cells isn’t going to do much for you once you’re gone. It can, however, do a lot for scientists studying human neurological diseases. Even if you die with a completely healthy brain, your donation provides important controls against which neuroscientists can compare pathological brains. Healthy blood-relatives of diseased patients are especially useful for this. In fact, the brain bank...get it?Harvard Brain Bank has previously complained of a lack of normal brains with which to compare their more ample supply of diseased brains. So pick your most-hated neurological or psychological disorder, commit your brain to the study of it, and you’ll be able to rest in peace assured that you’re contributing to its cure. Here’s a list of some of your options:
Alzheimer’s
The Taub Institute at Columbia University
Boston University Alzheimer’s Disease Center
NYU Alhzeimer’s Disease Center
Penn Memory Center
Parkinson’s
Parkinson’s Disease Foundation
Queen Square Brain Bank
Progressive supranuclear palsy
CurePSP
Multiple Sclerosis
National Multiple Sclerosis Society
Mental Illness (Schizophrenia, Alcoholism, etc)
Southwest Brain Bank
Using our Brains
Autism
MIND Institute
Narcolepsy
Stanford School of Medicine
Huntington’s
PREDICT-HD
Frontotemporal Degeneration
Association for Frontotemporal Degeneration
Brain Trauma
VA CSTE
Restless Leg Syndrome (no offense to the RLS people, but I imagine they have a hard time competing for brains against these other diseases)
RLS Foundation
General Brain Banks (these repositories process and store tissue and send it to a variety of labs upon request)
Brain Endowment Bank
University of Pittsburgh Medical Center
Harvard Brain Bank
The Human Brain and Spinal Fluid Resource Center
The Brain Observatory

The Brain Observatory is my personal favorite. The name is great,  they do some really nice imaging work with their specimens, and I’ve always wanted to have a professional photo shoot. Also, one year ago today they took on the charge of dissecting and imaging the brain of the infamously memory-impaired patient HM. Who wouldn’t want to be treated to the same star-quality experience?

A few procedural notes: Some of these banks are limited to only taking local donations (including the Brain Observatory, sadly). You may also be worried about how donating your brain might affect normal funeral procedures. The short answer is that it won’t. The removal process can be done at the hospital and is “minimally invasive” (although that description seems a bit generous). But it doesn’t cause any delays or prohibit an open casket. Importantly, since technically it is the next-of-kin that ultimately allows the donation to happen, your family has to be aware of your wishes. So sit them down, preferably not over dinner, to let them know your intentions. Or just write a post about it on your blog (hi family!).

Furthermore, your decision to donate is best made early, since some studies may want to collect some pre-mortem data from you. As the movie Head Games discusses, the VA CSTE lab at Boston University has recruited a number of current and former NFL players to participate in cognitive testing in addition to their commitment to donate. Their repeated head injuries can cause a lot of ongoing neurological changes throughout their life. This kind of longitudinal study can make the post-mortem contribution even more powerful.

To me, the urge to donate should be especially strong amongst fellow neuroscientists. We are the ones working to understand the brain. And we know the satisfaction of getting access to a lot of good quality data about it. We also know what is truly possible when we have that data. If you’ve spent your life donating the activity of your brain to neuroscience, why not give one last contribution to the field?

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One Comment

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  1. Kimberly Walters Ratliff / Feb 2 2014 4:11 pm

    THANK YOU for this article! I have another Narcolepsy brain bank to add to your list (source: http://narcolepsynetwork.org/get-involved/research-participation/brain-donation/ )

    The National Brain Bank for Narcolepsy Research (UCLA/West LA VA Medical Center) has been established in collaboration with Wallace W. Tourtellotte, M.D., Ph.D. of UCLA and the VA West Los Angeles Healthcare Center. An Advisory Committee consisting of internationally recognized narcolepsy experts evaluates requests for the use of the brains and will distribute the tissue according to the likelihood that the proposed investigations will lead to major advances in the treatment of narcolepsy. To request an information packet or for further information, contact Dr. Tourtellotte’s Brain Bank Coordinator at 310-268-3536.

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