Biospecimen Donation: Personal Journey of a Family and Genetic Diagnostic Lab Advancing Biomedical Research

Author Sarah Gray shares her story of how she anonymously donated her infant son’s post-mortem tissue for biomedical research to some of the most prestigious scientific facilities in the country. Years later, after tracking down each donation, Sarah met with the research scientists that received the donations to learn how they are being studied in cutting-edge research for medical discoveries.

One of these research scientists who received her son’s retinas is Dr. Arupa Ganguly. Dr. Ganguly directs the genetic diagnostic lab at the University of Pennsylvania and studies retinoblastoma, a childhood-onset cancer caused by mutations in tumor suppression gene.Together, they will share their experience and perspective on biospecimen donation and how it benefits research.

Transcript:

Alisson Proffitt:

On behalf of Clinical Research News Global Web Symposia, and our sponsor for today’s event, Sanguine, welcome everyone. Today, we’ll get a personal look at one family’s partnership with a genetic diagnostics lab to advance biomedical research. Tissue donation is generally an anonymous gift. So for Sarah Gray, finding researchers who received her son’s tissues pulled back the curtain on biospecimen donation. I’m Allison Proffitt, editor of Clinical Research News and I’m the moderator for today’s event.

Alisson Proffitt:

Now I’d like to introduce our speakers. Sarah Gray is the author of the award winning Washington Post bestseller, A Life Everlasting, the extraordinary story of one boy’s gift to medical science. A sought after speaker, Sarah advocates for organ, eye, tissue and blood donation around the world. Arupa Ganguly is a professor of genetics and molecular biologist at the University of Pennsylvania’s Perelman School of Medicine. Dr. Ganguly has particular expertise in mutation analysis and adaptation of novel assays for mutation scanning and direct mutation detection. And she runs the US reference laboratory for several genetic diseases.

Alisson Proffitt:

Amanda Effres is the head of feasibility and study design at Sanguine, where she reviews all researcher requests for sampling studies and other sanguine services, determining how Sanguine’s approach can adapt to the needs of the requesting researchers while also optimizing study timelines. Sarah, are you ready to get us started?

Sarah Gray:

Yes, I am. Thank you so much. And thank you all for joining today. I’m Sarah Gray, and I will dive right in. I’ll start out by just telling you that this is a story that starts out as something that sounds like a tragedy and something that just sounds like a very sad diagnosis. But it led to some really important developments and also a feeling of pride and empowerment.

Sarah Gray:

In 2009, I learned that I was pregnant with twins, and I was delighted, my husband and I were both delighted. We learned that we were pregnant with identical twin boys. So one sperm and one egg, identical twins. I went to my 12 week screening, three months to do the typical check for the birth defects. And the doctors showed us some sonograms, and they explained that baby A, there was something wrong with baby A, baby A had something called anencephaly, which if you notice here on the slide, you can see baby A’s skull is a little bumpy and baby B’s skull is around. That is what he was pointing at.

Sarah Gray:

The doctor explained that babies with this diagnosis are missing an important part of their brain. When you’re missing this part of your brain, you just can’t survive. You need this part of your brain to be a human, to be alive, to walk, to breathe, to have your heartbeat. These are the things that that would be missing this little boy.

Sarah Gray:

So I had never heard of this diagnosis, and I wish I never did hear of this diagnosis and I wish it would go away. But my husband and I started doing some research as you do, and we ended up, we had some discussions with the doctors too about selective termination. We learned that that would likely be too dangerous for the healthy baby and for me. So we decided to carry the pregnancy to term. And while I was preparing to carry the pregnancy to term, I looked into organ and tissue donation, because even though this baby’s death was inevitable, I thought that maybe there is something I can do to make it productive with the time that I had to plan.

Sarah Gray:

So I contacted Washington Regional Transplant Community, who explained that my baby, Thomas, would likely be too small at birth at four pounds to donate for transplant. I was just a regular person off the street at this point, I didn’t know anything about this kind of stuff. So I was surprised. I thought that all you had to do was die. And you could donate whatever you had to transplant, I didn’t realize that you have to match up the size of the baby with the size of the donor and the recipient and all this kind of thing. So, I started an education process of my own. I was disappointed to learn that he wouldn’t be able to donate for transplant. I thought the answer was just going to be no. But then I learned that he might be a candidate to donate for some research projects [inaudible 00:04:48].

Sarah Gray:

On the day of the birth, I had a C-section, almost 10 years ago now, and both babies were born alive, which was such a relief. Thomas had to be born alive in order to donate his organs. Blood had to be oxygenating all those organs in order for them to be useful. So Thomas was born alive and he lived for about six days. He lived long enough that we could take him home from the hospital and home is where he died surrounded by our family, which, when it comes to thinking about the end of a life, I think it was the best death that you could have planned, would have wanted mine this way if I could have picked it that way. We had a hospice nurse there who declared the death and then called Washington Regional Transplant Community and informed them that the death had occurred. They sent a driver to our home at about three in the morning and picked up his body and transported his body to our closest hospital, which was now a different one, Children’s National Medical Center.

Sarah Gray:

I got a call the next day to say that the recovery had been a success, and that they had been able to recover his eyes and his liver. And so it was a relief that the recovery was a success and we sort of moved on the best we could with our lives. We had a funeral and we were invited to grief counseling from WRTC, which I learned is a free service that they offer to every family in the community, not just ones who have donated organs for transplant or for research. So anybody.

Sarah Gray:

So even though my husband didn’t want to go, I convinced him to go, the two of us went. And we met about 20 other families from our community who were also grieving a loved one. And most of them had donated for transplant. So they went around the circle and one by one everyone introduce themselves and said who they were grieving. And some of them had said that they had received letters even from the transplant recipients. I received your husband’s heart, I want to say thank you, thank you for saving my life, thank you for helping to support your husband’s choice, all of these things.

Sarah Gray:

So one by one people went around the room and explained who they were and what their relationship was with the donation. I felt kind of weird when it got to my turn because I was saying, well, my son just died and he just died and he didn’t donate for transplant, I don’t know if he saved any lives. I don’t think I’m ever going to get any letters. But I’m glad I donated and I did the best that I could. And someone came up to me afterwards and they sort of tapped me on the shoulder and said, there, there, your donation is still important, and you’ll never know how many people’s lives your son changed. I just felt sort of upset by that. Yeah, I don’t know, and I would love to know, I wish I did know.

Sarah Gray:

So at that point, I decided, I wanted to see if I could contact researchers and say, I went through all this work with WRTC and my family, and when you got these donations, did they mean anything to you, were they valuable? So after I went to grief counseling, I decided I wanted to try to write a letter to the researcher that received my son’s retinas. I met some people from NDRI, and NDRI is the organization that helps to, it’s like a match.com, and it helps to set up researchers who need organs and organs that are available for use. And this is what it looks like when you register tissue with NDRI. Maybe some of you in the audience have used this before, but it lists the type of tissue, the size, the weight, the cause of death and the age of the donor, this kind of thing. So this is the list that my son’s retinas would have appeared on to any researcher who received them.

Sarah Gray:

So my plan was to write a letter to the researcher, a letter without a name on it because I didn’t know her name. And I sent it to the eye bank, and I asked them if they would please send this to the researcher. I know I had no right to do this but this was a request to ask if I could connect with the researcher, understand what they did, share a little bit about my son’s life with them as well. So I sent this letter off and I just sent as many good vibes as I possibly could and I hoped that this person would read my letter, understand my intention and respond. But I knew very well that they might not respond at all. And at that point, I think I’ll turn this over to the person who received my letter, which is Dr. Arupa Ganguly.

Dr. Arupa Ganguly:

Thank you Sarah for turning it over to me. I’m Arupa Ganguly and I’m going to share with you a story now, which is the basis of a lifelong friendship with Sarah Gray, with her son, two sons, Thomas Gray, Callum Gray, her husband, Ross, and also their daughter, Joyce.

Dr. Arupa Ganguly:

So, first of all, a little bit about myself. I am a PhD in physics but I’m board certified in clinical molecular genetics, which is given by the American Board of Medical Genetics and Genomics. So back many years ago, I was in India and I finished my high school, and then I wanted to pursue and become a doctor. But I also had an option to be a physicist because my father was a physicist, and he really wanted his daughter, the eldest child to follow his passion. I did not want to disappoint him but I did not also want to disappoint myself. So I pursued physics as an undergraduate, did a PhD in biophysics, came to the United States to do a postdoc in biochemistry. And my postdoctoral mentor, [Darren Prokop 00:11:22], was a visionary. We had some chats and he let me foray into the world of human molecular genetics. And that’s how today I have landed in the world of clinical molecular genetics.

Dr. Arupa Ganguly:

I’m a professor in the Department of genetics at the Perelman School of Medicine, but I have a clinical hat, and I’m the director of the Genetic Diagnostic Laboratory, and on a daily basis, I connect with patients, which has always been my dream. I’m a people person, I wanted to be of service to people, and here I am today. So, in the Genetic Diagnostic Laboratory, what we do is we study diseases. We study genetic diseases and we study mainly inherited genetic diseases. So we need to look at always at family trees.

Dr. Arupa Ganguly:

But in the clinical diagnostic laboratory, when we receive a sample, we receive a blood sample. But we don’t see the patient. We don’t see the human being. All we see is that we need a family tree, and what’s interesting is that in the family tree, we look at a man as a square, a woman as a circle, someone who is affected as a filled in symbol. Someone who’s diseased with the strike through. Sometimes we can have twins, they’re connected. Sometimes there can be a spontaneous abortion. So we follow the pedigrees by way of the square circles and the various lines that connect.

Dr. Arupa Ganguly:

And my research is on retinoblastoma, which is connected to the story that I’m going to unravel in a few minutes. Now what is retinoblastoma? Retinoblastoma is a childhood who had onset eye cancer. And what you see here is this, that usually, the children, they’re most of the time under one, sometimes a little older, under five, but never older than five, very rarely older than five. And you can see this white spot in their eye. It’s also detected when people would take a flash autograph and they would see a white spot and it’s called Leukocoria.

Dr. Arupa Ganguly:

It’s a very common childhood onset eye cancer, it’s actually the most common eye cancer. This is a disease which is associated with morbidity and mortality. The reason is that this eye cancer can spread to other parts of the body and mainly the brain and cause loss of eyesight and loss of life. The survival rate has improved remarkably in developed countries, but is a major concern in developing countries. And quite often, the only option is that of taking out of the eye.

Dr. Arupa Ganguly:

In the United States and Western world, when there is a family history of this disease, we perform genetic test and find out at birth whether the child is at risk of having retinoblastoma. So in this case, remember the arrow and the [inaudible 00:15:06], this is a baby girl. She’s only two months old. Her mother, when we asked her about her family history said she had retinoblastoma, so did her mother. This is a three generation pedigree, where the mother, grandmother and the daughter all have retinoblastoma. This woman went on to have another child who has retinoblastoma. She has a brother who has retinoblastoma.

Dr. Arupa Ganguly:

Since the disease is associated with so much morbidity, we wanted to do research and predict what are the molecular targets that really cause this disease to become deadly if it’s not diagnosed early. So here, from those squares and circles, now you see them picture of the baby girl and her mother. This was taken from a phone shot in Canada. This is baby girl Violet, and what she has, she has retinoblastoma, her mother has retinoblastoma. In Canada, in USA, it’s almost like 300 new cases of retinoblastoma are diagnosed every year. And as I have emphasized, these lead to considerable clinical challenge as to why it’s happening.

Dr. Arupa Ganguly:

So I wanted to do research. And what I want to show you here, research on retinoblastoma, which is the tumor that forms the back side of the eye. And this is the normal eye. Why does this normal retina change into that of a tumor, which has a potential to spread to other parts of the body and metastasize? So, as you can understand, if I want to do research on retinoblastoma and the match to retina, I have to get the matched retina. We get the retinoblastoma, the tumor sample because the eyes are inoculated and we have access to those tumors. But how would I get a normal retina from a normal child who is under the age of five or one? Absolutely no reason, right?

Dr. Arupa Ganguly:

But then, back 12 years ago, 13 years ago, I got this email from NBRI, the National Disease Research Initiative, interchange actually, and they are an organization back in Philadelphia. What they did was, they have a protocol where you can go and register, just as Sarah explained, for request for samples of retina. Okay, so in 2007 on December 12, I made a request to NDRI, and I said, is it possible to get retina sample from fetal or young children to be used as controls for retinoblastoma research? On 14th of December, I got this answer. Dr. Ganguly, we do get retinas on a regular basis. We don’t see as many from younger children though. But that is something we would be able to highlight with our sources and we shouldn’t have a problem getting them for you. I have attached our application for you in case you prefer to use an online application.

Dr. Arupa Ganguly:

So, I put in this application and I waited for a long time. Three years later on March 30th on 2010, we received a sample through this NDRI protocol. You can see that I made the request in 2007. Because I was requesting a normal sample, not one of the childhood onset diseases which are fatal so those children die, I was requesting a sample from a normal eye, I had to wait a while to get the sample. The sample came from Old Dominion Eye Bank as Sarah mentioned. Every time, a sample comes to our laboratory, we have a protocol, we create a sample folder, we give it a unique ID. In this case, the sample number was Res or research and the number was 360. And we freeze the eye in a particular storage solution and transfer for storage in our freezer.

Dr. Arupa Ganguly:

And we did some research, our funding ended. And then we were trying to collect more samples. Four years later, on September 23rd, 2014, I received this letter. It was an email from the Old Dominion Eye Foundation, and it reads, Dr. Ganguly, we received the attached letter from donor mother, Sarah Gray. Our records indicate that her son’s donated eye tissue was used by your lab for research purposes. Mrs. Gray is interested in learning more about the research that was conducted using her son’s eye tissue. If you are interested in responding, feel free to do so through me or you can reach out to her directly. Thanks in advance.

Dr. Arupa Ganguly:

I froze as I read that email. My thoughts, I started to flutter in my stomach. The donation of the retina, which is impossible to get under normal circumstances was very valuable. We are very grateful that on March 30th 2010, we got that sample. I did register with NDRI for this exact kind of tissue. But in hindsight, it meant I expected a normal child or a child with a normal eye to die. And then some agency would have to be informed so that they can take out the eye in a timely fashion and transport it to us. This meant some young mother lost her young child, and in a way, I was waiting for it to happen. I became paralyzed with my own thoughts.

Dr. Arupa Ganguly:

The connection of that eyeball Res 362 to a child was too real, too painful and too scary. Why scary? Because I’m thinking, what does the mother want? What if she’s not happy with the kind of research I do or I did. And was my request to NDRI unethical? I looked around the university and asked for advice. I was told I can and I should respond to the mother directly, discuss who I am and what we do and so on.

Dr. Arupa Ganguly:

So I wrote a letter to Sarah Gray. And I told her in order to carry out the studies properly, my research studies, it is necessary to compare our results from a retinoblastoma tumor tissue with that of a normal retina from a child of similar age. As you can understand, it is almost impossible to obtain normal retina from a child, and we have are further limited by the fact that we have to collect the tissue in a very short window of time after death in order to have viable cells from which we can isolate RNA or ribonucleic acid. And for these reasons, we are extremely grateful to parents such as you for making this precious material available to research labs such as ours.

Dr. Arupa Ganguly:

So here I am. I was waiting for a response, and I got a response from Sarah saying, “Dr. Ganguly, can we talk on the phone?” And I said “Yes, we can.” And I was waiting for this moment with a lot of anticipation till the time the phone call happened. And Sarah told me, “Dr. Ganguly, you have to understand, this eye would not have been of any use to Thomas or to me or to my family. But you used it for your research and that’s a big thing.” So here I am. This picture of the healthy eye on the left, and this is the picture of Thomas. And that abstract idea of a healthy eye made connection to that of a baby, a baby who passed away almost five years ago.

Dr. Arupa Ganguly:

So we met. On March 23rd in 2015, Sarah came to my lab. And you can see all the members of my lab sitting around the table, and Sarah, making the donation of her son’s picture to me. I graciously accepted it, and to this day, it’s sitting on the file cabinet behind my desk from where I’m talking today. We made a connection that has now become much longer lasting than I had ever anticipated. We took Sarah to the freezer, where Thomas’s sample was still sitting. We took Sarah to my office where we opened the folder that I told you about, which had stored all the paperwork that came with Thomas’s sample back in 2010. Here is Sarah sitting and here is Callum, the twin of Thomas Gray.

Dr. Arupa Ganguly:

When Sarah saw the picture of the packing slip, she gasped because it finally brought closure to her son’s eyes. [inaudible 00:26:20] and what we did to her, and I felt relieved. I did not do anything that could have hurt her but I really helped her bring closure to her story, to her son’s life.

Dr. Arupa Ganguly:

So at that time, my lab had also planned a big party for Callum because it was his birthday too. We were meeting on Thomas’s birthday, but it’s also Callum’s birthday. So here we are. We are all happy because we are about to celebrate Callum’s birthday. We had lots of good food and we really had a good time. There was a lot of media presence and public relations office was present. And there were many other photographers from Inquirer and local newspapers there. They all were witnessing this event where we connected a mother with the researcher. This became a big event and it became a story on radio labs and many other channels. The flurry of emails and requests for interviews, there were too many to elaborate.

Dr. Arupa Ganguly:

But my colleagues from campus heard me on Radio Lab and sent comments. So this one is from Dr. Eberwine, Jim Eberwine, who said, on my drive in today, I hear the Radio Lab story in which you were interviewed concerning Sarah Gray’s donation of her son’s retina for your research. You did a wonderful job in describing your feelings about the donation, the importance of it, and your personal feelings about such donations. You did all scientists who work with human material a service. Cheers, Jim. Another one said, Arupa, I listened to the recently Radio Lab podcast last night that featured your connection with the Gray family. It was very, very touching and I just wanted to drop you a note to tell you that I think you did a wonderful job with your interview and expressing the importance of this donations.

Dr. Arupa Ganguly:

So I think at the end of it, I really want to emphasize that the donation of a normal eye tissue for research when we only have access to diseased tissue is so important, and I’m so grateful to the Gray family for thinking of donating their tissue samples for research. My lab manager says, I enjoy this job because I always felt it was a good use of my skills and interests to help people find the possible genetic explanation for the symptoms. But these events opened my eyes to a different kind of benefit, both for us and the family involved. That day will always hold a special place in my heart, and so will that patient sample ID.

Sarah Gray:

So the way I see this whole story now, after being able to meet with Arupa, meet her lab, really understand the benefit of these donations, I just see this whole experience through a different lens. The way I see it now is that my son’s life is one to be celebrated. I tell people that my son got into Penn, which by the way, my grandfather also got into Penn, so that’s kind of an interesting family connection here. Here’s a picture of my grandfather. My son’s donations also went to Harvard and Duke University. So I say he got into Harvard and Duke and Penn.

Sarah Gray:

He also has a job and he has coworkers and colleagues like Arupa who need him in order to do their jobs. Even amazing researchers like Arupa who I even learned she’s such a high caliber researcher. She’s even been a plaintiff on a Supreme Court case for gene patenting. So, being a part of her lab has been an amazing addition to our lives, and it helps me see my son, Thomas, as being relevant in this community. I also see his life as not just a source of tragedy or pity, but also as a source of hope, as a source of collaboration, as a source of pride as a source of thoughtfulness, kindness. And the story is continuing.

Sarah Gray:

As Arupa mentioned, we have stayed in touch, we only met five years ago, but we have stayed in touch over the years and we do talks together now. Our latest example is today. We do talks together a few times a year. I feel like I’m always learning from Arupa. I’m always bouncing ideas off her and sending her things, and probably bothering her. She’s been very generous with me. But we do try to visit once a year, and Arupa even marks Callum’s height on her wall in her lab, which you can see in the middle picture here, he grew pretty fast, but that’s about one year. And we plan to visit Philadelphia again next month.

Sarah Gray:

So next month is going to be the twins’ 10th birthday, it’s hard to believe, it’s already been 10 years. Instead of us visiting the lab of the researchers, this time we’re changing it up a little bit. We’re having the researchers come in visit the organ procurement organization in Philadelphia that is called Gift of Life. So, instead of the donor family learning about the research and visiting them, the researchers are going to come and visit the organ donation organization and learn more about where these donations come from in the first place.

Sarah Gray:

And personally, I love getting people inside organ procurement organizations. That’s one of my sort of bucket lists every year is to see as many people as I can get to walk inside an organ procurement organization and just understand what it’s like, the better. And on that note, Arupa, I think you have some acknowledgements.

Dr. Arupa Ganguly:

Yeah, so this is my lab as it was like a year ago. There are some additional members now and some people have moved on. But all the research that I do and all the genetic testing that I do, I do it because of the members of my lab. Here is Keith [Rafferty 00:33:40], [Jenner Yatson 00:33:40], Elyse Ryan, Kate Monihan, and Richard and Heather at the back, they have left but then there are new people here, and I did not have their pictures in hand in time to add to them. But on a daily basis, I’m indebted to them for running a very smooth operation, whereby I can help many, many people with retinoblastoma and also hope one day to come up with new targets for retinoblastoma therapy, of course that’s subject to grant funding, which is not very easy to get these days. Thank you.

Sarah Gray:

Thank you so much. And I think at that point, I think that’s it. Amanda, did you want to take us into the QA?

Amanda Effres:

Yup, thank you. So, it’s an honor to be a part of this webinar and just wanted to share more information about Sanguine’s platform. And since we’ve been founded, our mission has really been making it easier for patients to participate in research and bridging that gap between patients and researchers. So what we’ve build since the company was founded is a patient community now that has grown to over 30,000 individuals diagnosed with different diseases who’ve opted in to learn about research opportunities from Sanguine. So we’re partnering directly with researchers at pharma and biotech companies who approach us to identify very specific patient populations for single time point or longitudinal sampling studies.

Amanda Effres:

And the platform we’ve built is direct to patient in our engagements. We go online, recruiting them through social media and other platforms as well as partnership through patient advocacy groups, and other organizations focused in our researchers’ areas of interest. So these patients are signing up and our team in-house goes ahead to screen them for these researchers specific criteria, handling the consenting process, accessing data from their medical records by their consenting to Sanguine’s access, and of course, all of the information shared with our researchers is redacted and associated to unique patient IDs.

Amanda Effres:

But as you see on this slide, this data integrated patient community is built up for researchers to select certain services from our platform, at home visits is a main feature of that. So patients can reside throughout the US to participate in the various research opportunities that we have. We send mobile phlebotomist directly to their home to perform these collections. And then from there, the samples may be delivered directly to researchers, in some cases, within four hours of collection. So, our feasibility team in-house reviews very carefully the exact requirements of these researchers to determine how we can adapt Sanguine services. And from there, we’ll execute on the specific needs of the researcher, and again, including information associated through the screens, questionnaire data. We can go back to patients on a longitudinal basis with a very high retention rate again because we’re making it very easy for them to participate.

Alisson Proffitt:

Amanda, thank you so much. Sarah and Arupa, thank you so much for sharing your powerful story. We had some questions that were submitted earlier. Sarah, if we can start with you, what are the main concerns from a parent when donating postmortem tissue?

Sarah Gray:

Well, I can tell you what my concerns were. I don’t know if I’m like every parent. But I had three things in mind I suppose. Number one was when I met with the people who were involved, WRTC and the different organizations, my spidey sense was turned on to do these people care about my child. Normally, I guess that’s natural for a parent, but coming from a biospecimen perspective, that may be a little unusual because I suppose on some end of the spectrum, a biospecimen could be seen as a supply. So, people are looking at this as like I’m buying pencils, I’m buying paper, I’m buying biospecimens or I’m requesting biospecimens. From my side, I didn’t see it, I don’t see my son’s tissue as an office supply. I see my son’s tissue as a precious gift.

Sarah Gray:

So number one, is I wanted to know, are these people treating my son as an office supply or are these people treating my son as an organ donor? And when I heard that the questions that they asked me and the way they responded to my questions and their thoughtfulness, I did feel like they did care about my son and they did understand my thoughts and needs and I felt like they could be trusted. So number one, do they act like they care about my son?

Sarah Gray:

Number two, once they get the sample, is it going to research that in general, I can support. I don’t need to know about every single little study, I don’t need to know about every little thing. But in general, is their intention in the right place? Once I got the answers to some of those questions, the answer to me was yes. And then the final concern was, is this going to take a lot of work out of me and is it very demanding on me, who I’m already in the middle of a family crisis, my child’s dying. So, there’s some unique challenges of reaching parents. However, I should say that once I got answers to those three things, they were all pretty easy to get the answers to right away, it was very easy for me to agree and consent.

Alisson Proffitt:

A follow on question to that. What barriers to donation did you experience? And once you had sort of resolved in your mind those questions, logistically, what barriers between you and the donation?

Sarah Gray:

Well, first of all, I was really shocked that I couldn’t donate for transplant. I don’t know about you guys, but when I hear about organ donation, I just think a heart transplant, a liver transplant. It didn’t occur to me that organ donation, he was still doing organ donation, so it’s still an organ, he had a liver or an eye that he is donating. So even though it’s not a transplant, it’s still an organ donation. The barrier that I wasn’t expecting was the size. And I know that this is also something that changes. So for those of you in the audience, the size 10 years ago, was a barrier. And I don’t know if today, I know that medical advances change so frequently, it’s something that’s a barrier yesterday is something’s not a barrier today.

Sarah Gray:

So I just give that as a disclaimer of the size was a barrier back then but I don’t know today what it is if the same situation were to happen. But the size was a barrier, but once we realized that he was not going to be a transplant donor, it seemed like the barriers were not very difficult to cross at all.

Alisson Proffitt:

We have another question that I think maybe you and Arupa can both weigh in on from different perspectives. What do you think is the most important step to improving the process of acquisition of biospecimens? And I think you probably have two sides of that coin there. Sarah, do you want to start?

Sarah Gray:

Arupa, do you want to start? You had an opinion on that one, Arupa?

Dr. Arupa Ganguly:

I think the real improvement can come by way of promptness of the communication. I know that’s not always possible. But in this case, I think Sarah had already informed that she is going to donate. I wish I had known that a little bit in advance because sometimes I have to make sure that people are present in the lab to receive the sample. And so, a little bit better communication helps. Even like 24 hours notice that this is what we are acquiring today, it helps to plan that good storage of the sample so that we do not lose anything in transit. And that’s how I would say.

Sarah Gray:

I could share my perspective on that in terms of what I think would make it, what I think would be an improvement to acquisition. And that would be, I think that the public just needs to hear more stories about this kind of thing. We need to understand what it’s all about. We know what a transplant is. We need to know what donating for research is. In fact, I was just talking to a friend of mine yesterday, one of my neighbors, and I mentioned that I, he asked me what I do for a living and I mentioned a few different things and I mention I also do some talks about organ donation. And he literally said to me, “Oh, I would donate but not for research.” And I just thought, you hear this a lot more than you would think.

Sarah Gray:

But I think the more we talk about it, if we have stories about it, we have conversations, we have cultural references, the more the discussion about what are biospecimens for, what are they needed for? Did you know that every single one of us is filled with thousands of biospecimens right now? I think if we get more used to understanding what biospecimens are, it will be much less scary to do this in the future for everybody. That’s just my two cents.

Dr. Arupa Ganguly:

Can I add one more thing? I was listening to Amanda about the Sanguine’s services, it clearly shows that people have a lot of misconception about research, and it’s shrouded in mystery and I think by doing what you’re doing Sanguine, you are letting people know that research into health sciences can really help the health outcomes of the future. And I think that’s a message that has to also go out along with, if people appreciate research, they will understand why biospecimens are required for research.

Dr. Arupa Ganguly:

I don’t think there is enough talks or stories that can tell people that people actually benefit if they contribute their biospecimen to research and to the, one of the concepts that you hear about now is bio-banks, which are collecting biospecimens and collecting longitudinal health information. And I can tell you that in future, this will be a huge resource, which will help everyone. But the message I don’t think has reached the general population, and that’s why we still have to struggle for getting biospecimens brought into our research.

Alisson Proffitt:

Excellent, thank you. Just out of curiosity, Sarah, did this person you were speaking with, did he go on sticking let’s go on to explain why not research? Did he have a misconception of what that meant or was it just kind of a gut reaction that he hadn’t thought through?

Sarah Gray:

I think I screwed up my conversation with him. So I’m planning my redo next time I see him. But he said, “Oh, I would donate to a person, but not to research.” So that tells me that he thinks research is not a person or research does not help people. So, next time I see him, I’m going to say it in a way that I think helps unpack a little bit. If you don’t like diseases, then you’d want research, right? People do disease research so that is who gets these biospecimens. The way the conversation went, I wasn’t quite ready for that but I’m planning the next one around, and I could also use tips.

Alisson Proffitt:

We can all sort of be planning our own responses so that we’re ready to answer those question, even If we can’t speak from a personal experience, we can at least advocate for our area of interest and advocate for research in general.

Sarah Gray:

Yeah. It just seems like such a, it is a disconnect. It’s not like this one person is the only person that’s saying it. I hear it everywhere. That’s sone of the reasons why we’re telling the story is to connect like biospecimens are needed by people, you might be one of those people.

Dr. Arupa Ganguly:

Sarah, can I just chime in? And I think you can use the example that I showed that I can get retinoblastoma, that’s the disease. But I have to compare it to normal, which is from a biospecimen from a normal child or a person. If we do not do that comparison, we want to know really what has gone wrong. And so that’s why all these questionnaires that are asked is that trying to find out what is the environment in which a person is living and what is the disease that’s happening? And is there any connection between the two? And so, likewise, if the person who is not present in that environment, does he not have the disease?

Dr. Arupa Ganguly:

So these are the natural comparisons that we have to do, and to find out whether there is a cause and effect relationship between what we are seeing and what’s present or absent in a normal person compared to what’s present or absent in a diseased person. We can continue this conversation at nauseam. But really what I feel like is that people have to understand that there is benefit and participation and research even if you are not diseased. You do not have the disease.

Alisson Proffitt:

Absolutely. We are out of time. So Arupa and Sarah, thank you so much for joining us. Amanda and Sanguine thank you for sponsoring this conversation, it’s an important one. Thank you for being a part of this. To all of our audience, thank you for joining us as well. Hope everyone has a lovely day. Thank you.

Sarah Gray:

Thank you.