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Life-and-death dilemmas. New medical technologies. Controversial treatments. In playing god? we hear from the patients whose lives were transformed—and sometimes saved—by medical innovations and the bioethicists who help guide complex decisions.
Ventilators can keep critically ill people alive, but when is it acceptable to turn the machines off? Organ transplants save lives, but when demand outpaces supply, how do we decide who gets them? Novel reproductive technologies can help people have babies in ways that are far beyond what nature allows. So, when should these “Brave New World” technologies be introduced, and who should control them?
playing god? is a production of the Berman Institute of Bioethics at Johns Hopkins University, with generous support from The Greenwall Foundation. New episodes drop every Tuesday.
The Berman Institute has created a guide for each episode where you can learn more about the guests, the history, and the ethics issues at: bioethics.jhu.edu/playing-god
00:00:02
Speaker 1: I got pregnant right away, and I had a really easy pregnancy. I felt great, I exercised, I did all the prenatal career one is supposed to do. Around week thirty seven, the doctors determined that he was breach and so scheduled a sea section, and I went in very excited to become a mom.
00:00:25
Speaker 2: When Laurie Strong and Goldberg arrived to give birth to her son, Henry, it was the first time she'd been to the hospital since the day she herself was born. She'd always considered herself a healthy person and her husband was too.
00:00:39
Speaker 1: I had had very little experience in the medical world.
00:00:44
Speaker 2: That that was about to change.
00:00:46
Speaker 1: I had a sea section, so they had to kind of like bring him up to where I could see him. And as they did that, because baby's hands are sort of wrapped up around their faces, the doctors noticed that he had an extra flap of skin on his right hand.
00:01:05
Speaker 2: The baby was whisked away to the nick cue before Laurie even got a chance to hold him, but she figured everything would be fine. She's an optimist. She celebrated with her friends and her husband in the recovery room until the doctor came back.
00:01:20
Speaker 1: He explained that Henry had a serious but not uncommon heart defect called tetrology a flow, and he showed us a picture of a healthy heart and a heart of tetralogy a felow, and seriously, my husband and I could not tell the difference. So I remember having this feeling like you must be in the wrong room, like you you should be next door or down the hall or somewhere. You couldn't vastly be talking about our child.
00:01:50
Speaker 2: But he was, and the news only got worse from there. Two weeks later they learned the cause of the flap of skin on his hand and the heart defect, and that the two things together can be a sign of a fatal genetic condition called Fanconi anemia.
00:02:06
Speaker 1: And our life just took a ninety degree turn.
00:02:11
Speaker 2: That meant Henry would need a stem cell transplant to save his life. Henry's doctor told Laurie and her husband that the best way to save their child was a stem cell transplant using the umbilical core blood from a sibling, what people in the medical community refer to as a transplant from a matched sibling donor. At the time, a stem cell transplant was possible from unrelated donors that the likelihood of success was much lower.
00:02:40
Speaker 1: Absent a sibling donor, he had a zero percent chance of living till kindergarten. In the meantime, he was going to have to have open heart surgery when he was five months old.
00:02:52
Speaker 2: Henry survived the surgery and recovered well, and Laurie and her husband, who had always wanted three kids, started trying for their next time one.
00:03:01
Speaker 1: Our life quickly became essentially just playing Russian Roulette with our children's lives, right because the disease is genetic, and every time we had a baby, we had a chance that the baby would have the same fatal disease as Henry, and we had a chance that the baby would be a perfect match. And so life got scary, really almost at the moment of parenthood.
00:03:34
Speaker 2: I'm Lauren and Rora Hutchinson. I'm the director of the Ideas Lab at the Johns Hopkins Berman Institute of Bioethics. On today's show, we'll go back to the late nineties to the first ever attempt to create a save your sibling. Is it ethical to create a life in order to save another? From Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics. This is playing God for Laurie Strongen and her family. The task at hand was to figure out how to save their child's life. They also wanted to have more children. Each time they did, they'd have a chance about nineteen percent that an embryo would be both free of the disease and a match for Henry, and if the pregnancy was successful, hopefully save his life. But that also meant that about eighty percent of the time they wouldn't get the right combination, let alone have a successful pregnancy. In the meantime, though Henry was growing up.
00:04:40
Speaker 1: He was fun, playful, and just a spirited, brave kit So it was very easy when anyone was with Henry to completely forget what was looming ahead because his life was so not just normal, but just magical.
00:05:02
Speaker 2: When Henry was still a baby, Laurie became pregnant with her second child, a boy named Jack.
00:05:08
Speaker 1: And we found out when we got the test results that our second child, who is now my twenty seven year old son, Jack, was healthy, and that was everything to us. We also found out he wasn't a genetic match to Henry, but at the time Henry was like six months old, his blood was totally normal, and it felt like something that was far out into the future and we weren't worried about it.
00:05:36
Speaker 2: During her pregnancy with Jack, Laurie learned something else too.
00:05:41
Speaker 1: We got a call from a doctor who said, what would you do if I told you you could knowingly get pregnant with a baby who's healthy and a perfect genetic match to Henry? And I said, yes, that sounds like, uh, you know, too good to be true.
00:06:08
Speaker 2: Eventually, lots of doctors would become involved in caring for Henry. One of them was John Wagner, based at the University of Minnesota. John studies novel therapies to treat fanconiananemia and other causes of childhood cancer.
00:06:22
Speaker 3: We know that there was urgency, but it wasn't an immediate urgency in that Henry was doing okay, So we had some time, not indefinite, but some time.
00:06:32
Speaker 2: John thought, if we can create embryos by IVF and then screen the embryos for genetic diseases, we can also screen to see if they would be a genetic match for a sibling with Fanconi anemia, using a technique called pre implantation genetic diagnosis or PGD. John's team would determine where the embryos were negative for fanconianemia and a genetic match for Henry. If they were, blood could later be collected the baby's umbilical cord and used as a stem cell transplant. Using cord blood for a stem cell transplant was still experimental at this time, and this particular combination of technologies had never been used to create a savior sibling.
00:07:15
Speaker 3: Laurie was very eager to try this because there was no good other options for her at her child, so we began the process.
00:07:26
Speaker 2: The new process went like this, Laurie and her husband would have embryos created by mixing her eggs and his sperm in the lab, and then genetic tests would be performed on them to see if any were negative for Fanconianemia and a match for Henry. If they were fortunate enough to get the right combination, doctors could implant the embryo into her uterus and the resulting baby would be free from disease and their umbilical cord blood could be used to save Henry's life.
00:07:58
Speaker 1: The stakes were so high and at this point now he's almost three, and remember when he was first diagnosed, they said, he's going to need to have a transplant by the time he's five, and a pregnancy takes nine months. That's what it takes.
00:08:16
Speaker 2: So the clock was ticking and this approach had never been successfully done before. But John and his team were working with another family at around the same time to try to create a sibling donor.
00:08:28
Speaker 3: Concurrent with Lourie Strongen and Alan Goldberg's attempt at having a baby, there is also Lisa and Jack Nash, who was the other family that was undergoing the procedures in parallel.
00:08:43
Speaker 2: The Nash's daughter Molly was around the same age as Henry and also had fanconi anemia. Her disease was progressing rapidly and they were running out of time, but as.
00:08:55
Speaker 3: Luck would have it, Lisa Nash was then pregnant. During the pregnancy, we were concerned that we might still not have enough time, but as it would turn out, in August twenty ninth, two thousand, Adam was born.
00:09:11
Speaker 2: Adam Nash was the first Savior sibling to be born via this new combination of technologies, a medical triumph. As for Laurie and her family, they did IVF and the embryos were tested but the first round was unsuccessful.
00:09:27
Speaker 1: It was really hard, but the promise of it was everything, and so we just went back and did it again. Ultimately, I went through IVF nine times in three years, and it was absolutely devastating. And then I'd come home and I'd see Henry and Jack and I'd be like, no, he's not I can do this again.
00:09:53
Speaker 2: Laurie had been doing everything she could to conceive through IVF, but meanwhile Henry was getting sicker. He would need to have a stem cell transplant as soon as possible. Eventually, they got to the point that there wasn't time for another round of IVF, let alone a nine months pregnancy. John had to make a tough call.
00:10:15
Speaker 3: I told them that I think that we have no more time. We're going to have to go with an unrelated donor. We can't keep doing this indefinitely, even though I knew that Laurie's heart that she wanted to continue, but on the other hand, we didn't have more time.
00:10:33
Speaker 2: Henry would need to proceed with a transplant from an unrelated donor who was as close a match as they could find, but they knew the odds of success would be much lower than with a savior sibling.
00:10:45
Speaker 1: Henry ended up in the hospital with a problem due to his low platelets, and we ran out of time, and the very best chance at that point for him to have a life life was to go to transplant.
00:11:04
Speaker 2: He lived for two difficult years after his transplant, but much of that time was spent in the hospital. Laura and her husband did everything they could to normalize life for him there and give him a semblance of childhood. On December eleventh, two thousand and two, Henry passed away at seven years old.
00:11:26
Speaker 1: He was so brave and resilient and funny, but ultimately, fanconi anemia is a tough adversary, even for the strongest and the bravest.
00:11:41
Speaker 3: I think that, of course, it was difficult for Laurie and Alan to accept that this was not going to work. It's almost, you know, given the caret that this is available, but it doesn't always work. And then they tried and tried and tried and tried and tried, and it still didn't work. And then he goes to transplant and then he dies of a complication from the transplant. And you know, when I say we, you know because I feel that I played a role in that you know, really felt that we tried everything, and I think in part that made it harder is like, you know, no matter what we tried, it just didn't work. And we tried and tried and tried.
00:12:25
Speaker 2: Fanconi anemia is a tough adversary, which is why John and others looked to novel ways of treating the disease. But what happens when the treatment isn't just derived from medicines or techniques, but also materials from another human The process generated tons of debate about the ethics of creating a child for the purpose of being a stem cell donor to his sibling. It was the first time that PGD was being used not only to choose an embryo without genetic disease, but also to choose between unaffected embryos because of their genetic match to another person, and John is, the pioneer of this new combination, was acutely aware of these ethical dinammas.
00:13:08
Speaker 3: The principal ethical issues that we had to efface was that we were testing an embryo for certain genetic advantages to us and to the child that existed with fancorninemia, that is HLA match or tissue matching. But that tissue matching was of no inherent benefit to that baby to be born. You know, would this child be used as spare parts? These were the terms that were being thrown around in those days, which was obviously creating a public response. The other parts of all this were, you know, what is the concern that we were going down the slippery slope. Yes, first we were eliminating a disease. That was a good thing, but the tissue matching might just be the first foray into something more such as sex selection, such as choosing on other traits. All we wanted to do was to save the life of Henry.
00:14:07
Speaker 2: People outright accused John and his team of crossing lines that shouldn't be crossed. He found it difficult to respond, what.
00:14:14
Speaker 3: Does this mean when someone says, you know, you're playing god? How did it go from that conversation where we're trying to save a life? But what they were focused on was all those unborn embryos.
00:14:29
Speaker 2: When Laurie went public with Henry's story in two thousand and one, lots of people had opinions for her as well.
00:14:36
Speaker 1: Some people were like writing it like, why didn't these people just let these deformed children die? To me, that's unethical to not try to save your child, to not fight to avoid like catastrophic medical consequences, that is unethical.
00:15:01
Speaker 2: Coming up, I dived deeper into the ethical questions about save your siblings with my colleague Jeffrey Khan. Today, stem cell transplants using umbilical core blood have much higher success rates, and medical advances make it easier to find an acceptable match without the need for save your siblings. But back then, when it was all very new, it was hard to navigate the ethical implications that came up. When John Wagner found himself doing this novel work with the Nash family, the first family he worked with, he called up his colleague Jeffrey Kahan to get his take. At the time, jeff was the director of the Center for Bioethics at the University of Minnesota, where John was working to help save the lives of children with Fanconi anemia. Today he's my colleague and director of the John Hopkins Berman Institute of Bioethics. So as a parent, hearing Laurie's story really can't help but affect her on a personal level. And Jeff, I know you're a parent too, and I'm sure we can just completely relate to how Laurie and her husband would have just wanted to do everything they could to save their child, and also how they would have loved their child that they were trying to create as a result of all the rounds of IVF that Laurie went through. But maybe you don't even need to be a parent to understand that the journey that Laura and her husband went on.
00:16:34
Speaker 4: I think you're right, Lauren, And I will say on a personal level, for me, a little more insight in that I was on the faculty at the University of Minnesota when this case was unfolding and Laurie and her husband, Allen, and their kids came to Minneapolis for a treatment for Henry. I have two sons and they're more or less the same age as Henry and Jeff, and so it was very close to home for us. I will say, when this was unfolding, you sort of have to ask yourself, what would I do as a parent? Wouldn't I do anything I possibly could? How can you not try everything when you're trying to save the life of your child?
00:17:18
Speaker 2: Yeah, of course, So wow, you were really there at the time as this was all unfolding.
00:17:24
Speaker 3: JEF.
00:17:25
Speaker 2: So, before we go further into hearing more about the ethical elements of the case that unfolded, could you just tell us a bit about the existing technologies that were being used for the first time in a new way.
00:17:39
Speaker 4: There was an ability to make embryos outside the body through in virtual fertilization that was not such a new technology at this point, and there was a newer, younger technology called pre implantation genetic diagnosis or sometimes preimplantation genetic testing, where a single cell could be removed from a very early stage embryo by a biopsy. That technology had been used up to this point to determine whether an embryo was carrying a genetic disease, and a decision could then be made about whether to implant that embryo. What was novel about this was the combination of IVF plus PGD, not just to determine whether the embryo was going to carry a genetic disease in this case, fanconi anemia, but if the embryo was negative for fanconi, we need to test to see whether that embryo would develop into a baby whose core blood could then be used to be transplanted into and save the life of Henry in this story of the older brother. So that was the kind of aha, wow, nobody had thought about putting the technologies that existed. They weren't new technologies, but the combination of using them in this way was novel and started to ring all sorts of alarm bells. Frankly from an ethics.
00:18:56
Speaker 2: Perspective, So just to be clear, then with this prestidure, it's not Crisper's so there's no gene editing going on. It's purely the selection of the embryos.
00:19:07
Speaker 4: Right, So this is twenty years ago a little bit more actually, So there wasn't gene editing. CRISPERD hadn't been discovered yet, So it was really just a way of making as many embryos as you can, which required you know, going through IVF and then testing those embryos in the way that I had described. So it wasn't modifying embryos, but rather selecting embryos based on the genetic composition.
00:19:30
Speaker 2: But this new technique did raise really big ethical questions because it was the first time that it was being done. So could you just bring us back into that twenty years ago the first time it's happening. What were some of the discussions in terms of the ethics that were happening.
00:19:45
Speaker 4: The world of bioetics at that moment knew about pgdability to test embryos outside the body and was really analyzing the right kinds of things, or the acceptable kinds of things that this testing could be used for. So the idea was pretty clear that it makes sense to test embryos when you're trying to avoid the disease in the child that will be born. Now important to say, when you're testing embryos and choosing one versus another, you're not choosing the same eventual person with and without the disease, but you're effectively choosing one person versus another, right the future person. So the arguments were about where's a line between sort of obvious genetic disease that better for the child to avoid right having, versus something that isn't really a disease, or maybe worse that is sort of selecting to identify traits that we more thought of as enhancements or physical characteristics like eye color, hair color, height, intelligence, musical aptitude. What would stop people from using the same technique not to avoid having a child with cystic fibrosis or fancone anemia, but rather selecting an embryo that was most likely to be a musical right or have blue eyes right and blonde hair. It starts to sound very eugenic, and so that was the discussion. How do we make sure that the technology can be used in ways that seem appropriate and ethically acceptable, but prevent the kinds of you know, misuses from happening. When no one thought about this idea of using the same technology to both make sure you're having a child that will not be affected by a genetic disease, and while we're at it, let's make sure there's a genetic match for another sick child in the family. I mean, that seemed like wow, way out of bounce to us. No one had thought about that.
00:21:35
Speaker 2: So it wasn't that people were concerned of this procedure, as it was people were more concerned about what it would lead to in the future.
00:21:44
Speaker 4: It may sound a little quaint to talk about this now, you know, in twenty twenty three, because there are companies that are offering exactly what we're talking about. You can use genetic testing services on embryos that were created by IVF and the I'll tell you, you know, the likelihood of a whole range of things, disease likelihood, but also things that they claim are about, you know, traits that probably we would think of as not being diseases. And that's that's sort of what we were worried about happening twenty plus years ago, and trying to guide the technology to be used in responsible ways. Maybe we weren't so successful.
00:22:21
Speaker 2: So, Jeff, at the time when this was unfolding, did the reactions from the public about the ethics surprise you?
00:22:29
Speaker 4: This took up a lot of air in media. It was a very widely covered watch story, and you know a few things that were sort of a little surprising to me. One was, isn't this planning God? Actually, that was a question that many many journalists asked, and it was like, well, no, you're not modifying anything. You're just selecting embryos that are, you know, otherwise made, and you make decisions about which to implant all the time. This is sort of adding a layer of information about which to implant and why. So that was one. The second was aren't the parents wrongly motivated by deciding to do this? Right? They're having a child to save their other child, which to me sort of harked back to you know, everybody thinks about having children and why they have children, why they don't have children, and we don't quiz them about that. We don't say, tell us why you want to have children. It doesn't work like that, right, People have children for good, bad, or no reason. So it didn't make sense to me to sort of drill down so much on you the parents to say that their motivation was bad. Well, what do you mean Their motivation is trying to save the life of their very sick son in this case, that seems like a pretty good motivation.
00:23:48
Speaker 2: Yeah, And so that really ties into what I want to ask you next about the conflict between ethical concerns and society's perspectives and then individuals rights as families to decide what to do about their own family. Could you talk a bit about that tension, how it plays out in this case in particular.
00:24:08
Speaker 4: Yeah, this case I think is a very unusual one because of that, the sort of foundational commitments that it puts in conflict are pretty unusual to see them, you know, put together this way. So we talked to a fair amount about when, if ever, can we restrict people's right to pro create, to have children, and you know, we don't do that in liberal societies, and that's sort of a commitment that we you know, some of the recent court decisions notwithstanding, there's a long history of people getting to decide for themselves, right, So we're very very careful in treading on individual decision making about reproduction. So that's one commitment. The other is we don't take advantage and exploit children, right, that's another really kind of foundational commitment. We protect children, and so we don't treat children as mere means, right. We treat them as ends unto themselves. And so we have a kind of a case where it feels like we're on the cost pier of treating children in a way that would be exploitive at least and maybe as mere means at worst. But to prevent that from happening requires us to restrict or tread on individual decision making about reproduction. That makes it almost impossible for us to figure out what to do, except to say, let the parents decide for themselves.
00:25:34
Speaker 2: Thanks so much, Jeff, great to talk with you today.
00:25:36
Speaker 4: Thank you, Lauren. Great to talk to you as well.
00:25:41
Speaker 2: As we heard for Laurie Strong in the decision was an uncomplicated one. All she was trying to do was save the life of her son, Henry. But she knows that it isn't just about her family.
00:25:54
Speaker 1: Here's the thing that I learned. All of us are the beneficiaries of many people who made tremendous sacrifices as the first or the second or the third to try something. And when you're the first person to try something, or maybe the second or third, you're rarely the beneficiary of it. Doctors learn, they make adaptations and improvements, and ultimately it works, and we all have benefited from scientific discovery on the backs of other people. This one was on my back, my husband's back, in my family's back. That's how it works. It was never only about Henry.
00:26:43
Speaker 2: Next time on playing God. Computer control brain implants can treat diseases like depression and Parkinson's in cases where all other types of treatment have failed. But these implants can change more about the brain than the disease they meant to treat.
00:27:00
Speaker 1: So there were questions about who was actually the narrator of the life at that point. Was it the technology or was it the person? Was it some kind of combination.
00:27:10
Speaker 2: When it comes to altering our personalities by implanting electronics, where do we draw the line? Are we giving computers too much control over who we are when we allow them to alter fundamental human traits like our emotions? And if it's okay to change our moods, what about other things like our intelligence? That's next time on Playing God. Thank you to our guests in this episode, Laurie Strongin and John Wagner. Playing God is a co production of Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics. Emily Vaughn is our lead producer. This episode was also produced by Sophie Crane and Lucy Sullivan. Our editors are Karen Schakerjie and Kate Parkinson Morgan. Theme music and mixing by Echo Mountain Engineering support from Sarah Bruguerre and Amanda Kaiwang. Show art by Sean Krney, fact checking by David jar and Arthur Gompertz. Our executive producer is Justine Lang at the Johns Hopkins Berman Institute of Bioethics. Our executive producers are Jeffrey Kahan and Anna Mastriani, working with Ameliahood. Funding provided by the Greenwall Foundation. I'm Laurena Rura Hutchinson. Come back next week for more Playing God. If you're interested in learning more about these stories and discussions, visit the Berman Institute's Guide to the podcast at Bioethics dot Jhu dot edu, forward slash Playing God, or find us on social media at Berman Institute