Why Should You Donate Your Brain To Science?

IRA FLATOW: This is Science Friday. I’m Ira Flatow. This next interview was recorded in front of a live Zoom audience. To find out more about our Zoom call-in events, you can go to sciencefriday.com/livestream. And now, on with the show.

Do you ever wonder what happens if you donate your brain to science? Well, it can be used to help researchers better understand and treat all types of diseases and disorders, like Alzheimer’s, Parkinson’s, autism, traumatic brain injuries, and depression. But researchers also need to study the brains of people unaffected by any type of disease. To help us better understand what scientists can learn from studying human brains, and how to donate your brain to science after you’re gone, are my guests, Dr. Bill Scott, executive director of the University of Miami’s Brain Endowment Bank, based in Miami, and Tish Hevel, CEO of the Brain Donor Project, based in Naples, Florida. Welcome to Science Friday.

BILL SCOTT: Thank you. Glad to be here.

IRA FLATOW: Well, let me go right to the questions. Dr. Scott, so there’s a clear need for people who have rare brain disease or neurodegenerative disorders or mental health diagnoses. We understand there’s a need for them to donate their brains to science. But what about if you don’t have any specific brain disorder? Can our brains still help?

BILL SCOTT: Absolutely. And in fact, we need people of all kinds to donate their brains for scientific research, because every time we want to understand what’s going on with a particular disease or condition, we have to have brains to compare it to. So if I want to understand why some people with Alzheimer’s disease have certain types of symptoms, I can compare them to other people with Alzheimer’s disease, and that tells me something.

But what I really want to know, is what’s very, very different between somebody that doesn’t have Alzheimer’s disease, what protects them from developing Alzheimer’s disease, and what makes somebody else more likely to develop it? And you can use any condition that involves the brain in that example, and we always need a comparison group. And so anyone, regardless of what your brain is like, can donate your brain for research, and it would be useful.

IRA FLATOW: Tish, I understand you actually have brought a human brain with you this evening.

TISH HEVEL: I have. And this is an interesting one for a few reasons. I’m being very careful. This is the brain of a man who died when he was 101 years old. And he was said to be very astute right up until the time he died. I’m also told by the scientists that his brain is larger than what is typical for a man his age. So he– yeah, this is his brain, which is– I feel so reverent about this, because the tissue is so precious.

IRA FLATOW: A lot of people– and in some states, on driver’s licenses will say, you know, this is an organ donor. Is the brain part of the organ donor program?

BILL SCOTT: Yeah, it is not part of an organ donor program where people are consented to donate organs to transplant. We don’t transplant brains. And it doesn’t automatically mean that somebody who’s registered with one of those programs will be asked if they want to donate their brains for research purposes. Some states will, and other states will not.

Now, sometimes, what will happen is somebody will be asked, at the moment that someone has died and it’s noted that they’re an organ donor, if they’re unable to donate their organs for one reason or another, they may be asked, well, do you want to participate in a research project or donate tissue for transplant? And then we will wind up getting a referral from that organ donor agency saying, here’s somebody that you might want to talk to. But it doesn’t happen as often as we’d like.

We would really like for people to be considering this ahead of time so that you can have that conversation with your loved ones and indicate that your desire is to donate your brain in addition to donating your organs for transplant, because you can sometimes do that. And sometimes making those wishes known will allow you to donate something if you cannot donate your organs.

TISH HEVEL: As Bill said, it’s not automatic. In fact, it’s very rare. I think your brain bank is one of the exceptions that work so closely with the organ procurement organizations.

So the other one is people who’ve signed up to be an anatomical body donor, usually to a local medical school. Yes, they’re getting your brain, but no, they’re not using it for neuroscience research. And scientists all agree that the brain is so much more valuable for neuroscience research than it is for anatomic study.

People are concerned, also, that it’s disfiguring, and it isn’t. The brain is removed through the back of the head, so an open casket is still very much an option. And then the final thing is, is there an additional cost? And you’ll all be pleased to know that there is not when you donate through one of the NIH’s brain banks. The NIH knows this is the most precious tissue for neuroscience research, and so they reimburse people along the way to be able to acquire it.

IRA FLATOW: Well, what do I do if I’m listening to this program now and you have motivated me to donate my brain? What’s the ABC? What are the steps?

TISH HEVEL: So we sort of function as the intake arm for the NeuroBioBank, which is the structure of the NIH’s brain banks. We send everybody to our website, which is at BrainDonorProject.org. You can learn more about brain donation, about the process, how badly they’re needed. And when you’re ready, there’s a little brain pre-registration button in the upper right hand corner.

That will take you to a very brief online form. Once you hit Submit, we’re able then to make a decision about which of those brain banks makes the most sense for that person and connect that person or his or her family to the brain bank. So at that point we sort of hand off the relationship to the brain bank, and then they proceed with the second set of registration forms, talking to the family, and letting them know what to expect at time of death.

IRA FLATOW: Now, Dr. Scott, let’s walk through the ABCs of what happens to the brains. I know that the brain bank you run at the University of Miami is part of a network of brain banks across the country, right? Run by the NIH, called the NeuroBioBank. Tell me about the network, the brain bank– what happens when a brain gets to a bank? It makes a deposit, so to speak.

BILL SCOTT: [CHUCKLES] So one of the things that I like to say is that the Brain Endowment Bank at the University of Miami specifically chose to have that endowment in the middle of our name because it’s like the endowment of a university, where you’re making a gift for a resource that will fund or enable work that we do with these brains long into the future. So it’s a bequest that we’re receiving.

And so once we get the notice that somebody wants to donate their brain, we organize the effort to coordinate the recovery of the brain at the time of death. This can take place anywhere in the country where we have a network of pathologists and technicians that work to do this work. The brain then gets put on ice and sent to the closest bank. So that’s one of the reasons why we have this network, so that we can have something that is a little closer to most donors.

And then when it arrives, we will take it, and we will dissect it so that it can be used for many different projects. So we’ll divide the brain in half. We’ll put one half of it into a fixative, which most of you would know as formaldehyde. We call it formalin most of the time. And that preserves it so that we can look at the structure of the tissue.

And then we take the other part of the brain. We will slice the half of the brain so that we then have smaller sections that can be frozen. And that preserves the brain in a way that it can be used in different kinds of experiments from the fixed part. So we can use that to look at proteins, and DNA and RNA, and the different structures within the brain to see how cells change.

And those get stored in different places. The fixed tissue goes into a container that stays in a cool room like a refrigerator. And the frozen tissue goes into a very low-temperature freezer. And every brain bank has a slight variation on this, but we all basically have the same structure– a place where we can receive the brain and dissect it, and places where we can store it so that we can then pull it out and share it with investigators when they need it.

IRA FLATOW: How does an investigator make a withdrawal from the bank? Do they come to you with a project and you OK it? I mean, how does that system work?

BILL SCOTT: Most brain banks use a similar system, and the NeuroBioBank is no different. There is a web-based portal where investigators can go and make a request. They describe the study they want to do. They tell us what they would do with the tissue and how much they need.

And then it goes through a review process to make sure that, yes, the science actually would benefit from the use of this resource. It’s a limited resource, so we make sure that the tissue is being used scientifically appropriately. And then as long as those criteria are met, a recipient, or a requesting scientist, can be sent those samples for use in their lab. And the NIH supports that.

Other brain banks that exist under other models have other ways of requesting tissue. Sometimes the samples are only made available if you’re working on a certain type of project or you’re at a certain institution or part of a bigger network.

IRA FLATOW: Tish, how did you get involved in this?

TISH HEVEL: My dad had dementia, and he was at the point where he was diagnosed with suspected Lewy bodies dementia. We weren’t familiar. So in our googling and trying to research what that was about, we came across the idea of brain donation online, because researchers thought they were on to something at that point, and they needed it. So we made arrangements to donate my dad’s brain.

And it was very, very complicated at the time. In those days, the NeuroBioBank was brand new, really, so they just hadn’t had a chance to do all this yet. So we made arrangements to donate his brain, and we thought it was complicated. And then we got in touch with the National Institute of Neurological Disorders and Stroke and said, can we help you with this? And Dr. Koroshetz put me in touch with the women who run the brain bank, and we got it started.

I’ll tell you– and this is going to sound corny, but hang with me– there was a palpable sense of comfort that we all felt in my family, and other people have told me about this as well, just knowing that there’s a really good chance that something positive can come from this horrible loss. You know, maybe another family down the road won’t have to suffer watching their loved one pass, because we’ll learn some stuff from this.

But the second thing is even more interesting, especially in neurodegenerative cases like the dementias and Parkinson’s. As part of being a brain donor family, the brain bank will provide, also at no cost, a copy of a really enlightening report. And that is called a summary of neuropathological findings.

That told us, and it tells anybody, here’s the diseases that were found in your loved one’s brain. Here’s the stage of the disease, the regions of the brain that were impacted. So, you know, in many cases, that’s the only definitive diagnosis you’ll get. So now when we learn more about some of these neurodegenerative diseases, they’ll be valuable to the rest of us, his children and family, to know how inheritable that is.

IRA FLATOW: Bill, I have to ask this question, because we are in an age of very sophisticated technology to look at the brain. We have MRIs, CT scans. How much usage does an actual tissue have as opposed to getting a scan of someone’s brain?

BILL SCOTT: Well, it’s important to be able to understand those images that we get from MRI and CT in the context of what’s going on in the actual tissue of the brain. So we can see patterns on those images, and we need to compare them to the pathology that exists in those same individuals so that we can understand what those images truly mean. Also, there’s no substitute for looking at a protein inside a cell inside a tissue to understand why, biologically, something might be occurring.

So in my own work as a genetic epidemiologist, one of the questions we often struggle to answer is, why is there a particular variant that’s associated with a disease responsible for the symptoms of the disease? What’s going on biologically? Because you don’t necessarily know from just knowing what the change in the DNA is.

But if we can then go in to brain tissue from people that carry that same variant, who had the disease, and look at what was going on with the proteins inside the cells– did the structure of the brain change– that is something that you can really still best see by looking at brain tissue. And not always does it show up on imaging. And in fact, it’s by looking at some of the brain tissue we can then map it back to images, so that we can then, in other people, look at images and interpret it in the context of what we know from brain pathology.

IRA FLATOW: This is Science Friday from WNYC Studios. Let’s go out to the audience. Monica has a question about how to talk with her family about brain donation. Welcome, Monica, to Science Friday.

MONICA: Hi. Thank you. So my question is, if I have a family member– she has a neurological condition and has been asked to donate her brain to the brain bank at Northwestern University in Chicago. She’s game to do it, and I want to support her in that. But what are the sort of questions or concerns from family or friends that I can anticipate, and how should I respond to those in order to support this idea?

TISH HEVEL: That’s a good question. A lot of people are concerned that it’ll interfere somehow with funeral plans or slow down that process. It doesn’t, since the brain needs to be removed and hopefully stored safely back at the brain bank well within 18 to 24 hours.

You know, I think people used to be a little– I’ll use the scientific word– hinkier about brain donation and what happens to our parts after we die than they are now. My experience has been, once people have a good understanding of how critical the need is for this tissue, of how we’re not going to get to the next set of breakthroughs without it, or at least not fast enough, then a lot of the objections they might have seem to just fall away. You know, when they know they’re doing something important as heck to advance science, so many people are like, hey, if it can help somebody on my way out the door, I’m fine. I’m finished.

IRA FLATOW: Some of the most cutting-edge neuroscience research is a project that is cataloging, if I understand it, every neuron in the brain. It’s part of NIH’s BRAIN Initiative. How are researchers using data from brain banks to do this?

BILL SCOTT: The BRAIN Initiative is touching all parts of NIH research. And the NeuroBioBank is a partner. We are participating in a project that is starting this year that is creating a brain cell atlas. Our mission, as the brain bank coordinators, is to identify enough people who fit that criteria we talked about before of neurotypical controls from across the age span and from all different kinds of racial, ethnic, and demographic groups. If it fulfills its promise, it will give us a very, very detailed roadmap to every structure, every cell type, every part of the brain. And it would be an incredibly important resource for decades.

IRA FLATOW: We have to take a quick break. And when we come back, more of our conversation about brain donation. Stay with us.

This is Science Friday. I’m Ira Flatow. In case you’re just joining us, you’re listening to a conversation about brain donation recorded in front of a live Zoom audience. I’m talking with Dr. Bill Scott, executive director of the University of Miami’s Brain Endowment Bank, and Tish Hevel, CEO of the Brain Donor Project.

Now, I understand that you’ve been leading long-term research studying patients with Parkinson’s. So explain to me how using a brain bank’s data helps you understand about Parkinson’s.

BILL SCOTT: So I got started a long time ago with brain donation as part of our longitudinal study of people with Parkinson’s disease. And it was a genetic study where we wanted to understand why certain people with particular changes in their DNA develop Parkinson’s. And we wanted to see whether it led to different changes in the brain.

So one of the first things that we were interested in is looking at the particular part of the brain, the substantia nigra, which is the part of the brain that goes away fastest, if you want to think of it that way, in people with Parkinson’s disease. And it creates dopamine. That helps you with movement and some of the signs that are well associated with Parkinson’s. And we wanted to see whether there were recognizable changes.

And what we found is that there are some changes in DNA that happen after we are born, so they’re called epigenetic changes, that might be different in people with Parkinson’s disease in these parts of the brain. And so that led us to hypothesize different ways that we might explore the biology of Parkinson’s disease that we weren’t considering before. And so that is the kind of very detailed examination that you can get from brain tissue that you can’t necessarily get from other types of samples.

IRA FLATOW: Let’s go to Peggy. Peggy has a question about what researchers have learned about the brain through brain donations. Hi, Peggy. Welcome to Science Friday.

PEGGY: I have something to share and something to ask. I’ve lived with schizophrenia most of my life. And in 2002, I joined ongoing research in schizophrenia at the National Institute of Mental Health in Bethesda, Maryland. And several years ago, the NIMH followed up with a detailed interview.

And I recently made a personal decision to donate my brain to research, and I believe research is going to end the suffering caused by mental illnesses. And this is what I’d like to know– how close is research coming to understanding the causes of mental illnesses? And how does brain donation factor in?

BILL SCOTT: Well, I’ll highlight a couple of mental health studies that I think are very important to advancing answers in this area. The NIH funds a group of studies under the Common Mind Initiative, which grew out of the genetic studies of a couple of decades ago. And it is a project that is putting together brain resources and other data to allow us to better understand psychiatric and other neurodevelopmental conditions.

Another major initiative that we haven’t talked about very much here, but we’re a part of here in Miami, is a brain bank at the Veterans Administration focused on post-traumatic stress disorder. And what that brain bank would really like to do is to understand, in people with service-related PTSD, how their brains are affected. And we need donors with those histories to participate in that initiative as well.

A short way of putting it is, if you have an interest, there is likely a brain bank that is also interested in that same thing. And it’s just a matter of finding the right place for you to donate.

IRA FLATOW: Rebecca has a question about whether her brain might be useful for researchers. Rebecca, hi. Welcome.

REBECCA: Hello. I was wondering, my whole life I have suffered with depression and social anxiety. That’s been kind of a standard throughout my family. But I became a soldier and went to Iraq, and I’m pretty positive I have blast damage from my time there, possibly CTE. So my question is, since I have two major crossover things there, would my brain still be of use, or is it now like an outlier, you know?

TISH HEVEL: I don’t think there’s anybody who only has one thing. In fact, we sometimes say, is there really such a thing is control anymore? We’ve all got stuff. And we’re not in silos. So no, I think your brain would be very valuable. You’ve been through a lot. Thank you for asking.

IRA FLATOW: What about athletes and the Chronic Traumatic Encephalopathy, as she mentioned, CTE? Are you finding people donating brains, and are they becoming useful for that kind of research?

BILL SCOTT: So there are a couple of different places where people with CTE or suspicion that they have CTE have been donating brains. There is a well-established CTE brain bank in Boston. There are CTE donors within the NeuroBioBank as well. There are multiple places where those donors are being registered and where they’re making contributions.

I think that an important point that I want to emphasize– some of these things we’re talking about, we only know about after we look at the brain. So when somebody registers, they don’t necessarily register because they say, I have CTE. They register because they’ve had concussions, or they’ve had a TBI, or they have symptoms that are consistent with it, but they don’t know. And so just because you don’t know for sure doesn’t mean you can’t register to be a donor. You describe what your exposures have been, what your history is, and the brain bank can then use that to describe the brain when people request it for research.

IRA FLATOW: Well, this has certainly been an enlightening discussion for me. Dr. Bill Scott, executive director of the University of Miami’s Brain Endowment Bank, based in Miami. And Tish Hevel, CEO of the Brain Donor Project based in Naples, Florida. Thank you both for taking time to be with us today.

TISH HEVEL: Thank you.

BILL SCOTT: Thank you.

IRA FLATOW: You can watch a full recording of the Zoom event and learn more about brain donation or preregister your brain. Go to sciencefriday.com/braindonation. Sciencefriday.com/braindonation.

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