A Donor Family’s Perspective: Observations on the Post-Mortem Tissue Donation Process for Biospecimen Research
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Hello, this is Ann Nguyen, Senior Associate Conference Producer with Cambridge Healthtech Institute. We are here for a podcast for the Ninth International Leaders in Biobanking Congress, happening this October 5-27 in Nashville, Tennessee. Please welcome one of our speakers and short course instructors, Sarah Gray, Director of Communications with the American Association of Tissue Banks. She's also the author of the medical memoir, A Life Everlasting: The Extraordinary Story of One Boy's Gift to Medical Science, and is an advocate of organ, eye, and tissue donation.
Sarah, thanks very much for chatting with us.
Sure, my pleasure.
At the conference, amid the presentations about biobank operations, informatics, and biospecimen science, your talk is entitled “How Biobanking Changed My Bereavement”. Could you share some of that experience?
Sure. Well, I thought, after looking at the agenda for this conference ... I've never been to a biobanking conference before, and it occurred to me that there is a lot of biobanking nerds here and biobanking experts who maybe haven't heard a story like mine and don't quite get the connection between how a bereaved family could need a biobanker and how a biobanker could need a grieving family. So I thought I would share my story to help make that connection.
The background of my story is that, in 2009, I learned that I was pregnant with twins and one of them was healthy and one of them was not. He had a diagnosis called anencephaly, and babies with this diagnosis typically die shortly either before or after birth. It's because their brain was not formed correctly in the very beginning stages of life. My husband and I had planned to carry the pregnancy to term because we still had a healthy baby, and the doctor explained to us that we could just plan emotionally to have a baby that wouldn't make it very long and we would have one that was healthy.
Part of my planning was looking into if there was anything productive that could come from this tragedy. What I started looking into was organ, eye, and tissue donation. I learned that my son would likely be too small at birth to donate for transplant. They anticipated that his weight at birth would be somewhere around 4 or 5 pounds, and to donate for transplant, they sort of need to match the size of the organs. They said that they just don't have patients that small who need a transplant but that we could donate for research and make a biospecimen donation, so we consented to that. We signed everything in advance and we hoped that these donations would make a difference.
After he was born, he died a few days later and it was really sad, really devastating for our family. But we were able to call the organ procurement organization who was able to recover his corneas, his retinas, his liver, and then we also had his cord blood recovered by the nurses in the delivery room, and we were able to make a biospecimen donation. I got a call the next day after the recovery to say that the recovery had been a success and that they had been able to recover corneas, retinas, and liver and cord blood in time, and that the donations would be valuable and there were some researchers who were looking for these sort of donations.
I was delighted that these donations made a difference. I mean, it would have been, logistically, a lot easier for my family to just bury him and not make any biospecimen donation but I wanted to give it a try. So I was delighted that it worked out. We had a funeral the next week and just sort of moved on with our life in the following years.
At the one-year anniversary of my son's death, I called the organ procurement organization to find out if they had any feedback or results from the researchers or the biospecimen professionals to say what they were using them for or what they were studying and if anything interesting had been learned from these donations. I was disappointed to learn that they just don't get that kind of feedback and that they had never got that kind of feedback before and researchers just don't provide that to donor families.
So I was disappointed but I also just sort of accepted, like, "Okay, that's how the system works and I'm glad I tried." And I learned that his corneas went to Harvard and his liver went to a cell therapy company called Cytonet in Durham, which is now called Promethera, and his retinas went to University of Pennsylvania and his cord blood went to Duke. So I sort of felt like, "Oh, my son got into Harvard and Duke and Penn, and he's a relevant contribution to these universities."
But then a year later, I had a business trip to Boston, where I remembered that my son's corneas were at Harvard. I decided to call the front desk of the Eye Research Lab, explain who I was, and just ask if I could have a tour and learn what happens in this kind of place. That's where the journey began. I ended up visiting all four facilities that received my son's donations, meeting some really interesting people, learning about some really interesting studies, and feeling that making a biospecimen donation was truly worthwhile.
When you decided to donate your son's post-mortem tissue for research, could you elaborate on what expectations you had about the process and the tissue's use, and did they change and were those expectations met?
This is my first time ever doing anything like this, and I did not work for the American Association of Tissue Banks at that time. I like to call myself just a normal person. I was just a normal member of the public with no experience with research or even grieving. So my expectations were pretty hazy. I just thought that he would be donating some sort of tissue. It would be in maybe a vial, maybe it would be hand-delivered or maybe it would be mailed. I hoped that I would hear a little bit about what study it went to but I don't know where that hope came from. I didn't really have an expectation but I had more curiosity than expectation.
As far as did they change, a little bit. I received an outcome letter about a week after the recovery that explained where everything went but it was kind of vague. The letter said things like, "His corneas are going to help prevent and cure blindness and come up with treatments for blindness," which I felt was kind of really generic. I was hoping I would hear something more like, "It went to this particular researcher who's studying this particular disease in this particular way." Maybe that's just me, that I wanted that level of detail.
I also assumed that whoever received these tissues was highly educated. People don't get jobs in these labs ... these are not entry level jobs. People get these jobs because they're really passionate about a certain field, or at least that was my perception. I just imagined that if I had the chance to meet one of these researchers at a cocktail party or something and I said, "Tell me what you do, tell me what you study," I had the feeling that I would hear a lot. So I hoped that I would hear a lot about, "Oh, thank you for this donation. It went to this, this, and this." So when I asked the organ procurement organization to give me some information, I was expecting a little more than what I got, but again, I had no experience in this area so I was happy to accept that they gave me all the information that they had.
The ultimate goal of biobankers and scientists in this community is, of course, to advance medicine and benefit patients. You could say the patients are the ultimate customers of all they do. Has there been anything you've observed or learned about the path from biospecimen management to biomedical research to translation to the clinic that could be improved to better serve the patients?
That seems like a really big step. I guess I'm thinking a bit more from a baby step perspective, which would be ... I think there was a step in the biospecimen path that could be improved. And it's the step between the donor family donating the tissue, giving it to, sometimes it's like an intermediary organization like NDRI, National Disease Research Interchange, or IIAM, the International Institute for the Advancement of Medicine, or a group like that that essentially takes the tissue and warehouses it or saves it and matches it with the researcher.
I would like there to be, in the future, a way for a grieving family, or even if it's a family that donated tissue from someone who's still living, to be more connected to the researcher if both sides are open to that, almost like an open adoption of ... If I want more information and the researcher feels comfortable enough to share, for there to be a path that these two groups can learn about each other. And even, my family was able to tour the different labs and meet the researchers. They hugged us and they were happy to meet us, and they said they've never met someone like us before and they always wondered where this kind of tissue came from and they wondered what the backstory was.
It was a very human connection for them to meet us and also for us to meet them and to really feel that, our son died and it was really tragic and it was really devastating and there was nothing that we could do to save his life. Absolutely nothing, there's no surgery, there's no medicine. It was inevitable. His death was inevitable but we were able to see that even the tragic death of a young child can have some added layers of meaning and it can help other people. So I think interactions like that can start to build and help the public realize the importance of biobanking.
I guess that's a long answer to your short question, which is I think I would like to encourage the grieving families and the researchers and the people who provide the biospecimens and the researchers to connect a little bit more. I think that could help build credibility with the biospecimen banks and possibly help the public understand the biospecimen process and ultimately lead to more biospecimens being made available, which would help patients.
Your presentation is part of the It Takes A Village opening session at the conference. We can see how the work of researchers, regulators, biorepository managers and practitioners contributes to patient health. Besides organ and tissue donation, how can the public contribute to that work upstream?
I think that ... and I could be wrong about this but I believe that the public really doesn't know much about biobanking and how it works and biospecimen donation and how it works. I think the public and the research community could really benefit from researchers and biospecimen professionals opening their doors, inviting the public in, sharing through communications, and just sharing what is biospecimen donation? What is it all about? Can you donate diseased tissue? Can you donate healthy tissue? What happens to it after a researcher gets it?
I think it benefits the public to get to know the researchers a little bit and develop trust that these people are ... their heart's in the right place. They respect the gift. They respect the donation. They're not taking biospecimens and just treating them in a disrespectful way. They really value these and in some cases, they are waiting many, many years for one donation. I think if the public understood a little more about what happens behind these closed doors, that they would provide a lot of support in terms of public trust and also to provide organ, eye, tissue, blood, any kind of donation when the time comes, when they get that question.
Most of us, I think, will probably only get this question a few times in our life. I mean, I believe that if you're living your life in a good way and in a happy way, that you have strong relationships with friends and family and because of that, you will be involved in end-of-life planning for someone you love at some point in your life. You may only get this question a few times of end-of-life planning. Do you want to do a cremation? Do you want to do a burial? Would you like to do organ, eye, tissue donation? Some of us only get one or two opportunities in our life to say yes. I think if we understand what's happening in these labs, we are more likely to say yes.
If I could ask biobankers anything or share something with biobankers, I would ask that anyone who receives a donation, a post-mortem sample, to think about where that came from and to think about, if they are interested and if they're open to this, to write a letter to the donor's family to tell them what you're working on and let them know that if they would like to know more about what's being worked on, that they have an ability to ask. They have a person to ask, and that if they ever wanted to tour the lab and meet the people that are working on it, that they're welcome to do that. I know not every researcher is going to be into this idea, and it's really new, but I think these kind of activities can really help build community and public support and show the relationship between how a grieving family can really need a biobanker and how a biobanker can really need a grieving family and it can be a beneficial relationship to both.
If anyone is ever successful connecting with their donor's family and they want to tell me about it, I would love to hear about it. My email address is email@example.com. That's S-A-R-A-H @ S-A-R-A-H-G-R-A-Y.com. Thank you.
Thank you again Sarah for sharing your story and your insights and your observations from your very unique and human perspective.
That was Sarah Gray of the American Association of Tissue Banks. She'll be speaking during the opening It Takes a Village session and co-instructing the short course From Donor to Discovery: Post-Mortem Sample Biobanking during the Leaders in Biobanking Congress, running October 25-27 in Nashville.
To learn more from her, visit www.BiobankingCongress.com for registration info and enter the keycode, “Podcast”.
This is Ann Nguyen. Thank you for listening.