Missed out on our live webinar? Here’s a complete list of questions and answers!
You can also see the full Science Friday webinar, listen to the Science Friday radio replay and learn more about brain donation here.
The Brain Donor Project Founder and CEO Tish Hevel recently participated in a live webinar with Ira Flatow, host of Science Friday, along with her colleague, Bill Scott, Director of the NeuroBio Brain Bank at the University of Miami. Nearly 200 people participated on the live call! Unfortunately, there wasn’t time to answer all the questions that came in via chat, so we’ve compiled and answered them all here.
Q1. Is there a form for brain donation? What are the steps?
A1. The easiest way to begin the process of registering yourself (or someone else) to become a brain donor is to visit braindonorproject.org and click on the “pre-registration” button in the upper right area of the home page. It is a brief online form that collects contact information and a few other details. You may complete it for yourself or on behalf of someone. Once that online form is submitted, the information will be referred to the appropriate Brain Bank in the NeuroBioBank network. Within ten business days (this time period can be expedited if necessary), a packet of consent and release forms will be sent that needs to be completed, signed and returned in order to be considered a registered donor of that brain bank. You’ll also be given instructions for the family regarding what they need to do at the time of your death. The most important thing is to notify the brain bank within an hour of the donor’s passing, as time is of the essence for the recovery procedure. The body would be transported to a local facility – often this can be the funeral home involved; if not, another mortuary or medical facility is identified. The brain is then retrieved through the back of the head (so as not to be disfiguring) and it is shipped to the brain bank. All of that is at no cost to the family. Once that’s taken place, the body is released to the family to proceed with whatever (funeral or other) arrangements have been made.
Q2. If my brain goes to science, can I donate the rest of my body, too?
A2. Yes – but special arrangements need to be made. The best way to coordinate donating both your body for anatomical research to a whole-body donation program and your brain for neurologic research to a brain bank is as follows:
- First, register to become a brain donor. The brain is much more valuable for neurologic research than anatomical study. Once you are connected to a brain bank, inform staff that you intend to be a body donor as well and will provide the contact information for that program once it’s arranged.
- Next, locate a body donation program (usually through a local medical college) in your area that will accept a body once the brain has been removed. Some will; some won’t. You’ll need to call to find out if they do. Register with that program and inform that you plan to be a brain donor and will share information about your brain bank so that the two facilities can coordinate recovery/retrieval at the time of death.
- Make sure your family knows of your plans.
- At time of death, have a family member notify both organizations and inform them of your plans, and verify that they each have contact info for the other. The two programs will coordinate transport of the body, then retrieve the brain and ship it to your brain bank at no cost to your family. The body would then be transported to the anatomical study program.
Q3. Is there a maximum age for donating a brain?
A3. No. Brains of all ages are needed
Q4. Do you have a contact person to assist for those of us who are brain injured have been unable to navigate the process?
A4. A person’s family may help them with the paperwork…often they’re the ones making these arrangements on behalf of a loved one.
Q5. We did this with my mother, who had dementia. We learned she had both Alzheimer’s and vascular dementia. We were hoping to see pictures. Do they ever send those?
A5. Not usually, but the important details are shared. The Summary of Neuropathological Findings explains what diagnoses are discovered in the brain, the stage of the disease and the region(s) of the brain impacted. As we learn more about these diseases, this will become even more important information to the family.
Q6. What brain banks enroll controls — not particularly old, without any specific conditions of interest?
A6. Each of the brain banks in the NIH’s NeuroBioBank accepts unaffected control brains.
Q7. I think I already signed up to donate my brain but I don’t have any of the paperwork, so I was wondering how I figure that out and if I can have a way to get that paperwork.
A7. If you’re not certain, the best thing to do is complete the online form on our site. When you click the “brain pre-registration,” the Brain Donor Project will make sure you get connected to the proper brain bank, which can let you know if anything else needs to be done to complete your registration.
Q8. A relative had arranged to donate his body to science but his final illness left him too skinny to be eligible. Could he have at least donated his brain? He had had dementia in the end and would have wanted to contribute to research.
A8. Possibly. More information would be needed as only certain dementia cases are being accepted. But unlike body donation, there is no weight restriction on brain donation
Q9. A family member has a neurological condition (dysarthria) and has been asked to donate to a brain bank with Northwestern University in Chicago. She’s game to do it but what questions or concerns from family can I anticipate and how do I respond to support her choice?
A9. Please consider reading our FAQ. While the Brain Donor Project does not work with Northwestern, many questions will likely be answered there.
Q10. I have lived with depression and social anxiety my entire life; I also was a soldier in Iraq and strongly believe I have damage from that (maybe CTE)… with that cross-over, am I still useful to research?
A10. Yes. Both of these issues could possibly be studied independently and also whether there’s any connection. In case, please consider donating. And thank you for your service.
Q11. Is it true that checking ‘yes’ to organ donations at the DMV does not refer to brains?
A11. That is in fact true. The brain (used for research) is not routinely recovered as part of organ donation (which is for transplant); however, you can register to donate your brain and select to be an organ donor. In the event that a person would die in such a way that both his/her organs AND brain would be usable, the recovery teams coordinate to maximize donor intent. That means if there’s an opportunity to save a life with an organ transplant, that would take precedence.
Q12. But don’t they want to study ABNORMAL brains? (I donated my mother’s brain – she had a parkinsonian dementia)
A12. Both kinds of brains – non-affected “control” brains as well as those of people who had a neurological disorder or disease are critically needed.
Q13. We had arranged for dad to donate his brain (and I am signed up as well). He died with Parkinson’s in June 2020. We received an initial report. Will we actually hear more about how his brain will be used in research?
A13. Because a single brain can be used in dozens of studies, it would become too cumbersome to report all usages. But you can check the NeuroBioBank’s website to see studies using donated brain tissue to learn more about specific disorders being studied.
Q14. If I am listed as an organ donor for any transplants, can I also donate my brain to a brain bank?
A14. Yes. In the event that a person would die in such a way that both his/her organs AND brain would be usable, the recovery teams coordinate to maximize donor intent. That means if there’s an opportunity to save a life with an organ transplant, that would take precedence.
Q15. I was part of a study on chronic traumatic encephalopathy done at Boston University, but they’ve now told me they don’t want any more brains. Where can I donate my 75-year-old (or better) brain?
A15. Please consider donating to the NIH’s NeuroBioBank through the Brain Donor Project. Any time a person has been part of a study, the data collected makes the brain even more valuable.
Q16. There was a recent story on Ask-A-Mortician about a family who’s loved one’s body was sold to a company that sold tickets to a dissection for entertainment purposes, when they thought it was going to be used to advance science. How do we ensure this does not happen if we donate our brain?
A16. Brains donated to the NeuroBioBank through The Brain Donor Project are used exclusively for neuroscience research by vetted researchers conducting an authorized study.
Q17. If anything interesting is discovered in my brain, can I assure that my family will be informed of the findings?
A17. If your family requests it from the brain bank, they will receive (at no cost) a copy of the Summary of Neuropathological findings, which identifies any diagnoses found in the brain, explains the stage of the disease and tells which region(s) of the brain were impacted.
Q18. How long can a brain be preserved and be used for research?
A18. Good question! At the moment, a preserved brain (either frozen in properly monitored freezers or preserved in a solution like formalin) has no “expiration date.” Brains stored decades ago are still being used in neuroscience studies.
Q19. When you donate your body does the brain automatically go to you (the Brain Donor Project) or do you have to state specifically?
A19. Body donation for anatomical study and brain donation for neurological study are two different things. While it is possible to do both, special arrangements must be made. Please refer to answer #1 above.
Q20. How are post mortem brains preserved and for how long? Any problems with storage and deterioration of specimens?
A20. No “expiration date” has been determined as brains stored decades ago are
still in use. Typically, a brain is bisected and one hemisphere is frozen while the other is kept in a preservative solution.
Q21. How many brain banks are there?
A21. In the NeuroBioBank network of the NIH, there are six brain banks that distribute tissue to authorized scientists conducting approved research around the world.
Q22. Do researchers have access to the tissues in all brain banks?
A22. Yes. Researchers access the portal via the NeuroBioBank’s site to learn about the tissue available, then request samples for their study.
Q23. If we are registered as brain donors, how do we make sure that donation happens? Does the Brain Donor Project provide wallet cards or other documentation?
A23. The best way to ensure that a donor’s wishes are seen to, is to talk through the plans with family. Designate a couple of people to notify the brain bank, which will have provided a 24/7 phone number for this purpose. And, yes, the brain banks provide a wallet card along with other documentation. But making sure family understands a donor’s plan and his/her role in seeing these plans through is the optimal way to make sure it happens.
Q24. From your speakers, it sounds like as a donor I would need to know about a specific study to donate my brain to. Is there a general way to set this up so it doesn’t fall on the family?
A24. No specific study needs to be identified. Brains are stored and samples are often provided for a variety of studies.
Q25. Are brains studied that are atypically “superior”? Brains of people with outstanding intelligence or creativity, etc.? To see how those brains compare to “normal” or impaired brains?
A25. Studies evolve every single day. It’s hard to predict which criteria will be of interest to scientists now or in the future. That’s why medical records are studied and sometimes even interviews with family members to get a complete picture of the donated tissue for any type of study.
Q26. Is there an open-source database available for the public to access data on donated brain studies?
A26. Any scientist who receives donated tissue for his/her study is required to publish results in a way that other scientists can access. Visit the NeuroBioBank’s site to learn more about findings in specific diseases.
Q27. Is it something you add to your living will?
A27. That’s not the best way to ensure that brain donation happens, because time is of the essence. Registering in advance with a NeuroBioBank bank (through The Brain Donor Project) and making sure close friends or family understand their responsibility to notify the brain bank is the best way to ensure that brain donation wishes are carried out.
Q28. If someone had TIAs, is their brain eligible for donation?
A28. Yes. Although stroke can be a decline factor in certain cases, if it was not a devastating one, or the patient recovered well, certain brain banks will accept the tissue.
Q29. How often in your experience do you have access to de-identified medical records linked to donated brain tissue and how does access to records, or lack thereof, impact the usefulness of donated tissue in scientific research?
A29. One of the documents in the Brain Bank’s registration packet is a medical records release, which isn’t executed until death, to ensure the picture is complete. As you might expect, the more data available on a specific brain, the more valuable it is to science.
Q30. Will you also want donations of CSF (cervical spinal fluid) and blood to correlate with brain specimen findings?
A30. Yes, CSF is sometimes collected along with the brain, and sometimes additional bio-samples are retrieved depending on the diagnosis and what researchers have made known that they might need.
Q31. Is this shortage of brains a new phenomenon or has there always been a shortage of the number of brains researchers would prefer to have access to?
A31. It’s become more critical as neuroscience advances to achieve new breakthroughs. As you might imagine, for those who suffer and their families, the answers cannot come fast enough. And donated brain tissue, for which there is no substitute, is in very high demand because of this.
Q32. Have you begun getting brains from people who have died from COVID?
A32. Yes. At the start of the pandemic, there was a learning curve as recovery specialists worked to make sure the lab wasn’t vulnerable to infection in the recovery process. Then, most labs across the country shut down, and very little scientific work was done. We’re now at the point that specialists know what sort of environment is most safe for recovery when dealing with an active COVID case.
Q33. How quickly does a brain need to be harvested after death?
A33. Ideally, the brain is removed and back at the brain bank stored properly well within 24 hours.
Q34. Who/which organization decides where my brain donation should go to?
A34. When donating through The Brain Donor Project, the BDP makes a determination (based largely on geography, but other factors come into play also) as to which brain bank is most appropriate for that individual. Because of the NeuroBioBank’s distribution protocols, tissue from any of the NBB sites is available to researchers everywhere.
Q35. Is the brain removed at the site of death?
A35. No. Generally, the brain bank arranges for the body to be transferred someplace local – often the funeral home which with the family is working. If not, another medical or mortuary facility is identified, and that’s where the brain bank’s recovery specialist would perform the recovery.
Q36. If brain bank specimen pathology is found that may genetically affect relatives, will that information be shared for their benefit?
A36. If your family requests it from the brain bank, they will receive (at no cost) a copy of the Summary of Neuropathological findings, which identifies any diagnoses found in the brain, explains the stage of the disease and tells which region(s) of the brain were impacted.
Q37. Are there any criteria to meet to donate your brain? Sounds like there aren’t any.
A37. There are a few decline factors. The NBB cannot accept brains from outside of the U.S. as slowdowns at borders mean the brain cannot be stored properly within the time necessary. Also, a systemic infectious disease means a person would not be a good candidate. And only certain dementia cases meet the criteria for researchers at the moment. Once you are pre-registered, your assigned Brain Bank can provide more answers.
Q38. Is there a specific study for brain injuries? My husband had a brain injury that crushed his right frontal lobe. He also has always been a heavy drinker which atrophied his cerebellum. In addition, he continues to function intellectually, and, I suspect, has an extra-large hippocampus. How would one find a study interested in those issues?
A38. It’s impossible to predict what sort of studies may be conducted in the future, however, we do know that scientists need many, many different kinds of brains. The beauty of the NeuroBioBank is that families or individuals don’t have to worry about which brain bank may be most appropriate for a given brain with a specific disease. Researchers simply search for what they need from any of the available tissue in all of the NBB sites.
Q39. In an emergency, will you still be able to get my brain (I carry a card in my wallet)?
A39. Typically, family is among the first notified in such a situation. If they’ve been properly instructed on what to do at time of death, any circumstances of death would lead to family notifying the brain bank.
Q40. Can one brain be used for multiple studies?
A40. Yes, dozens. And in some cases, hundreds.
Q41. Do you want brains that have had brain diseases and a lot of the tissue is missing?
Q42. Are people collecting brains from people who died of COVID19 yet? We’ve heard about the “brain fog” and it would probably be good to know how that manifests physically.
A42. Yes. The NBB is now collecting brains from people who have had COVID.
Q43. What is the timeline for donation? Does the brain have to be taken immediately upon death? What is the effect of embalming on the studies?
A43. The brain must be recovered and ideally stored properly at the brain bank well within 24 hours in most cases. That means that it needs to be removed within just a couple hours of death.
Q44. Does harvesting the brain delay burial?
A44. No. Since the recovery must take place within a few hours of death, brain donation does not slow down funeral/burial/cremation plans.
Q45. Would you want brains that have had probes from deep brain stimulations?
Q46. Can a research project procure brain samples from multiple brain banks?
Q47. If I wanted to donate my brain, how do I note this in an Advanced Care Directive?
A47. The best way to ensure that brain donation takes place is to register in advance and talk to your family. Special arrangements must be made in advance; if the first time family knows of a potential donor’s intention to become a brain donor is upon reading the Advanced Care Directive, it may be too late.
Q48. Several brain banks only want donations from people who have already been in a research program. Does the Brain Donor Project accept donations from someone who hasn’t already been in a study?
Q49. Who removes the brain and who covers the cost? Do all surgery centers participate?
A49. The brain is removed by a qualified recovery specialist assigned by the Brain Bank. The NIH covers the cost of transportation to one location, the brain removal and shipping to the brain bank. Usually the recovery takes place at a funeral home, but if that isn’t doable for whatever reason, an alternate facility is identified. The brain bank handles these arrangements.
Q50. Is it generally easier to donate in larger populations, like bigger cities?
A50. Not necessarily. Each of the brain banks has a network of recovery specialists so that recoveries can take place anywhere in the US.
Q51. Any studies of intelligence?
A51. Studies evolve every single day. It’s hard to predict which criteria will be of interest to scientists now or in the future. That’s why medical records are studied and sometimes even interviews with family members to get a complete picture of the donated tissue for any type of study.