WEBVTT - Creating One Life to Save Another 0:00:02.840 --> 0:00:06.280 I got pregnant right away, and I had a really 0:00:06.680 --> 0:00:11.400 easy pregnancy. I felt great, I exercised, I did all 0:00:11.440 --> 0:00:14.800 the prenatal career one is supposed to do. Around week 0:00:14.880 --> 0:00:19.320 thirty seven, the doctors determined that he was breach and 0:00:19.760 --> 0:00:23.400 so scheduled a sea section, and I went in very 0:00:23.440 --> 0:00:24.760 excited to become a mom. 0:00:25.840 --> 0:00:28.400 When Laurie Strong and Goldberg arrived to give birth to 0:00:28.440 --> 0:00:31.200 her son, Henry, it was the first time she'd been 0:00:31.240 --> 0:00:33.960 to the hospital since the day she herself was born. 0:00:34.680 --> 0:00:38.240 She'd always considered herself a healthy person and her husband 0:00:38.400 --> 0:00:39.240 was too. 0:00:39.560 --> 0:00:44.080 I had had very little experience in the medical world. 0:00:44.479 --> 0:00:46.240 That that was about to change. 0:00:46.479 --> 0:00:48.400 I had a sea section, so they had to kind 0:00:48.440 --> 0:00:50.800 of like bring him up to where I could see him. 0:00:51.479 --> 0:00:54.960 And as they did that, because baby's hands are sort 0:00:54.960 --> 0:01:00.160 of wrapped up around their faces, the doctors noticed that 0:01:00.240 --> 0:01:02.840 he had an extra flap of skin on his right hand. 0:01:05.560 --> 0:01:07.920 The baby was whisked away to the nick cue before 0:01:08.000 --> 0:01:10.800 Laurie even got a chance to hold him, but she 0:01:10.880 --> 0:01:15.039 figured everything would be fine. She's an optimist. She celebrated 0:01:15.080 --> 0:01:17.360 with her friends and her husband in the recovery room 0:01:17.440 --> 0:01:18.720 until the doctor came back. 0:01:20.480 --> 0:01:24.680 He explained that Henry had a serious but not uncommon 0:01:24.760 --> 0:01:28.880 heart defect called tetrology a flow, and he showed us 0:01:28.920 --> 0:01:31.720 a picture of a healthy heart and a heart of 0:01:31.840 --> 0:01:35.400 tetralogy a felow, and seriously, my husband and I could 0:01:35.440 --> 0:01:39.440 not tell the difference. So I remember having this feeling 0:01:39.520 --> 0:01:42.320 like you must be in the wrong room, like you 0:01:42.319 --> 0:01:45.640 you should be next door or down the hall or somewhere. 0:01:45.840 --> 0:01:48.720 You couldn't vastly be talking about our child. 0:01:50.160 --> 0:01:53.400 But he was, and the news only got worse from there. 0:01:54.240 --> 0:01:57.040 Two weeks later they learned the cause of the flap 0:01:57.080 --> 0:02:00.440 of skin on his hand and the heart defect, and 0:02:00.480 --> 0:02:02.560 that the two things together can be a sign of 0:02:02.600 --> 0:02:05.800 a fatal genetic condition called Fanconi anemia. 0:02:06.480 --> 0:02:10.320 And our life just took a ninety degree turn. 0:02:11.720 --> 0:02:14.440 That meant Henry would need a stem cell transplant to 0:02:14.480 --> 0:02:18.440 save his life. Henry's doctor told Laurie and her husband 0:02:18.520 --> 0:02:20.720 that the best way to save their child was a 0:02:20.760 --> 0:02:24.720 stem cell transplant using the umbilical core blood from a sibling, 0:02:25.400 --> 0:02:28.120 what people in the medical community refer to as a 0:02:28.160 --> 0:02:32.440 transplant from a matched sibling donor. At the time, a 0:02:32.480 --> 0:02:37.120 stem cell transplant was possible from unrelated donors that the 0:02:37.280 --> 0:02:39.440 likelihood of success was much lower. 0:02:40.320 --> 0:02:43.880 Absent a sibling donor, he had a zero percent chance 0:02:43.880 --> 0:02:47.560 of living till kindergarten. In the meantime, he was going 0:02:47.600 --> 0:02:49.800 to have to have open heart surgery when he was 0:02:49.880 --> 0:02:50.680 five months old. 0:02:52.040 --> 0:02:55.600 Henry survived the surgery and recovered well, and Laurie and 0:02:55.639 --> 0:02:59.440 her husband, who had always wanted three kids, started trying 0:02:59.480 --> 0:03:01.200 for their next time one. 0:03:01.320 --> 0:03:07.360 Our life quickly became essentially just playing Russian Roulette with 0:03:07.760 --> 0:03:12.240 our children's lives, right because the disease is genetic, and 0:03:12.320 --> 0:03:14.440 every time we had a baby, we had a chance 0:03:14.600 --> 0:03:17.880 that the baby would have the same fatal disease as Henry, 0:03:18.680 --> 0:03:23.760 and we had a chance that the baby would be 0:03:23.840 --> 0:03:31.800 a perfect match. And so life got scary, really almost 0:03:31.800 --> 0:03:33.440 at the moment of parenthood. 0:03:34.680 --> 0:03:37.560 I'm Lauren and Rora Hutchinson. I'm the director of the 0:03:37.600 --> 0:03:41.560 Ideas Lab at the Johns Hopkins Berman Institute of Bioethics. 0:03:42.240 --> 0:03:44.920 On today's show, we'll go back to the late nineties 0:03:44.960 --> 0:03:48.360 to the first ever attempt to create a save your sibling. 0:03:49.480 --> 0:03:51.920 Is it ethical to create a life in order to 0:03:51.960 --> 0:03:56.160 save another? From Pushkin Industries and the Johns Hopkins Berman 0:03:56.240 --> 0:04:05.520 Institute of Bioethics. This is playing God for Laurie Strongen 0:04:05.640 --> 0:04:08.200 and her family. The task at hand was to figure 0:04:08.200 --> 0:04:12.000 out how to save their child's life. They also wanted 0:04:12.040 --> 0:04:14.800 to have more children. Each time they did, they'd have 0:04:14.840 --> 0:04:18.440 a chance about nineteen percent that an embryo would be 0:04:18.480 --> 0:04:21.679 both free of the disease and a match for Henry, 0:04:22.240 --> 0:04:25.800 and if the pregnancy was successful, hopefully save his life. 0:04:26.640 --> 0:04:29.560 But that also meant that about eighty percent of the 0:04:29.640 --> 0:04:33.080 time they wouldn't get the right combination, let alone have 0:04:33.160 --> 0:04:38.159 a successful pregnancy. In the meantime, though Henry was growing up. 0:04:40.040 --> 0:04:48.240 He was fun, playful, and just a spirited, brave kit 0:04:48.440 --> 0:04:52.240 So it was very easy when anyone was with Henry 0:04:52.360 --> 0:04:58.440 to completely forget what was looming ahead because his life 0:04:58.520 --> 0:05:01.400 was so not just normal, but just magical. 0:05:02.720 --> 0:05:05.800 When Henry was still a baby, Laurie became pregnant with 0:05:05.839 --> 0:05:08.320 her second child, a boy named Jack. 0:05:08.640 --> 0:05:12.240 And we found out when we got the test results 0:05:12.440 --> 0:05:15.599 that our second child, who is now my twenty seven 0:05:15.680 --> 0:05:20.400 year old son, Jack, was healthy, and that was everything 0:05:20.480 --> 0:05:23.880 to us. We also found out he wasn't a genetic 0:05:23.960 --> 0:05:27.279 match to Henry, but at the time Henry was like 0:05:27.440 --> 0:05:30.400 six months old, his blood was totally normal, and it 0:05:30.520 --> 0:05:33.880 felt like something that was far out into the future 0:05:34.560 --> 0:05:35.880 and we weren't worried about it. 0:05:36.600 --> 0:05:40.080 During her pregnancy with Jack, Laurie learned something else too. 0:05:41.480 --> 0:05:45.360 We got a call from a doctor who said, what 0:05:45.360 --> 0:05:48.120 would you do if I told you you could knowingly 0:05:48.160 --> 0:05:52.039 get pregnant with a baby who's healthy and a perfect 0:05:52.040 --> 0:06:02.360 genetic match to Henry? And I said, yes, that sounds like, uh, 0:06:03.680 --> 0:06:07.520 you know, too good to be true. 0:06:08.320 --> 0:06:11.880 Eventually, lots of doctors would become involved in caring for Henry. 0:06:12.600 --> 0:06:15.280 One of them was John Wagner, based at the University 0:06:15.279 --> 0:06:20.120 of Minnesota. John studies novel therapies to treat fanconiananemia and 0:06:20.200 --> 0:06:21.840 other causes of childhood cancer. 0:06:22.720 --> 0:06:25.000 We know that there was urgency, but it wasn't an 0:06:25.040 --> 0:06:28.960 immediate urgency in that Henry was doing okay, So we 0:06:29.040 --> 0:06:31.360 had some time, not indefinite, but some time. 0:06:32.120 --> 0:06:35.320 John thought, if we can create embryos by IVF and 0:06:35.360 --> 0:06:39.279 then screen the embryos for genetic diseases, we can also 0:06:39.360 --> 0:06:41.679 screen to see if they would be a genetic match 0:06:41.680 --> 0:06:46.000 for a sibling with Fanconi anemia, using a technique called 0:06:46.000 --> 0:06:51.280 pre implantation genetic diagnosis or PGD. John's team would determine 0:06:51.360 --> 0:06:55.839 where the embryos were negative for fanconianemia and a genetic 0:06:55.920 --> 0:06:59.279 match for Henry. If they were, blood could later be 0:06:59.320 --> 0:07:02.640 collected the baby's umbilical cord and used as a stem 0:07:02.680 --> 0:07:06.760 cell transplant. Using cord blood for a stem cell transplant 0:07:06.880 --> 0:07:11.120 was still experimental at this time, and this particular combination 0:07:11.200 --> 0:07:14.880 of technologies had never been used to create a savior sibling. 0:07:15.800 --> 0:07:19.600 Laurie was very eager to try this because there was 0:07:20.160 --> 0:07:24.080 no good other options for her at her child, so 0:07:24.120 --> 0:07:25.360 we began the process. 0:07:26.200 --> 0:07:29.800 The new process went like this, Laurie and her husband 0:07:29.840 --> 0:07:32.960 would have embryos created by mixing her eggs and his 0:07:33.040 --> 0:07:36.480 sperm in the lab, and then genetic tests would be 0:07:36.520 --> 0:07:39.320 performed on them to see if any were negative for 0:07:39.400 --> 0:07:44.440 Fanconianemia and a match for Henry. If they were fortunate 0:07:44.560 --> 0:07:47.960 enough to get the right combination, doctors could implant the 0:07:48.000 --> 0:07:52.040 embryo into her uterus and the resulting baby would be 0:07:52.120 --> 0:07:55.600 free from disease and their umbilical cord blood could be 0:07:55.720 --> 0:07:58.000 used to save Henry's life. 0:07:58.360 --> 0:08:02.640 The stakes were so high and at this point now 0:08:03.480 --> 0:08:07.520 he's almost three, and remember when he was first diagnosed, 0:08:07.600 --> 0:08:09.640 they said, he's going to need to have a transplant 0:08:09.640 --> 0:08:13.640 by the time he's five, and a pregnancy takes nine months. 0:08:14.040 --> 0:08:14.960 That's what it takes. 0:08:16.680 --> 0:08:19.600 So the clock was ticking and this approach had never 0:08:19.680 --> 0:08:23.000 been successfully done before. But John and his team were 0:08:23.040 --> 0:08:26.000 working with another family at around the same time to 0:08:26.080 --> 0:08:27.840 try to create a sibling donor. 0:08:28.920 --> 0:08:33.600 Concurrent with Lourie Strongen and Alan Goldberg's attempt at having 0:08:33.600 --> 0:08:37.840 a baby, there is also Lisa and Jack Nash, who 0:08:38.559 --> 0:08:42.599 was the other family that was undergoing the procedures in parallel. 0:08:43.679 --> 0:08:46.920 The Nash's daughter Molly was around the same age as 0:08:46.960 --> 0:08:51.760 Henry and also had fanconi anemia. Her disease was progressing 0:08:51.880 --> 0:08:55.880 rapidly and they were running out of time, but as. 0:08:55.760 --> 0:09:00.319 Luck would have it, Lisa Nash was then pregnant. During 0:09:00.320 --> 0:09:03.320 the pregnancy, we were concerned that we might still not 0:09:03.360 --> 0:09:06.520 have enough time, but as it would turn out, in 0:09:06.640 --> 0:09:10.199 August twenty ninth, two thousand, Adam was born. 0:09:11.160 --> 0:09:14.000 Adam Nash was the first Savior sibling to be born 0:09:14.200 --> 0:09:19.439 via this new combination of technologies, a medical triumph. As 0:09:19.480 --> 0:09:22.240 for Laurie and her family, they did IVF and the 0:09:22.240 --> 0:09:26.079 embryos were tested but the first round was unsuccessful. 0:09:27.000 --> 0:09:31.040 It was really hard, but the promise of it was everything, 0:09:31.920 --> 0:09:37.679 and so we just went back and did it again. Ultimately, 0:09:37.880 --> 0:09:41.920 I went through IVF nine times in three years, and 0:09:41.960 --> 0:09:47.160 it was absolutely devastating. And then I'd come home and 0:09:47.160 --> 0:09:50.960 I'd see Henry and Jack and I'd be like, no, 0:09:51.160 --> 0:09:52.439 he's not I can do this again. 0:09:53.400 --> 0:09:56.840 Laurie had been doing everything she could to conceive through IVF, 0:09:57.760 --> 0:10:01.520 but meanwhile Henry was getting sicker. He would need to 0:10:01.559 --> 0:10:05.640 have a stem cell transplant as soon as possible. Eventually, 0:10:05.760 --> 0:10:07.959 they got to the point that there wasn't time for 0:10:08.040 --> 0:10:12.479 another round of IVF, let alone a nine months pregnancy. 0:10:13.320 --> 0:10:15.080 John had to make a tough call. 0:10:15.920 --> 0:10:18.320 I told them that I think that we have no 0:10:18.440 --> 0:10:20.120 more time. We're going to have to go with an 0:10:20.200 --> 0:10:23.640 unrelated donor. We can't keep doing this indefinitely, even though 0:10:23.640 --> 0:10:27.559 I knew that Laurie's heart that she wanted to continue, 0:10:28.200 --> 0:10:30.960 but on the other hand, we didn't have more time. 0:10:33.200 --> 0:10:35.840 Henry would need to proceed with a transplant from an 0:10:35.960 --> 0:10:38.840 unrelated donor who was as close a match as they 0:10:38.840 --> 0:10:42.480 could find, but they knew the odds of success would 0:10:42.520 --> 0:10:44.679 be much lower than with a savior sibling. 0:10:45.840 --> 0:10:51.640 Henry ended up in the hospital with a problem due 0:10:51.679 --> 0:10:54.600 to his low platelets, and we ran out of time, 0:10:55.040 --> 0:10:58.720 and the very best chance at that point for him 0:10:59.360 --> 0:11:02.479 to have a life life was to go to transplant. 0:11:04.880 --> 0:11:08.440 He lived for two difficult years after his transplant, but 0:11:08.559 --> 0:11:12.199 much of that time was spent in the hospital. Laura 0:11:12.240 --> 0:11:15.160 and her husband did everything they could to normalize life 0:11:15.160 --> 0:11:18.080 for him there and give him a semblance of childhood. 0:11:19.679 --> 0:11:23.839 On December eleventh, two thousand and two, Henry passed away 0:11:24.120 --> 0:11:25.199 at seven years old. 0:11:26.640 --> 0:11:33.120 He was so brave and resilient and funny, but ultimately, 0:11:34.120 --> 0:11:38.880 fanconi anemia is a tough adversary, even for the strongest 0:11:38.920 --> 0:11:39.640 and the bravest. 0:11:41.120 --> 0:11:45.560 I think that, of course, it was difficult for Laurie 0:11:45.720 --> 0:11:49.400 and Alan to accept that this was not going to work. 0:11:49.679 --> 0:11:53.160 It's almost, you know, given the caret that this is available, 0:11:53.840 --> 0:11:57.160 but it doesn't always work. And then they tried and 0:11:57.200 --> 0:11:59.400 tried and tried and tried and tried, and it still 0:11:59.480 --> 0:12:03.280 didn't work. And then he goes to transplant and then 0:12:03.360 --> 0:12:07.240 he dies of a complication from the transplant. And you know, 0:12:08.280 --> 0:12:11.000 when I say we, you know because I feel that 0:12:11.280 --> 0:12:14.280 I played a role in that you know, really felt 0:12:14.320 --> 0:12:17.240 that we tried everything, and I think in part that 0:12:17.320 --> 0:12:19.080 made it harder is like, you know, no matter what 0:12:19.160 --> 0:12:22.480 we tried, it just didn't work. And we tried and 0:12:22.520 --> 0:12:23.319 tried and tried. 0:12:25.400 --> 0:12:29.320 Fanconi anemia is a tough adversary, which is why John 0:12:29.320 --> 0:12:32.120 and others looked to novel ways of treating the disease. 0:12:33.360 --> 0:12:36.240 But what happens when the treatment isn't just derived from 0:12:36.280 --> 0:12:41.520 medicines or techniques, but also materials from another human The 0:12:41.600 --> 0:12:45.160 process generated tons of debate about the ethics of creating 0:12:45.200 --> 0:12:47.400 a child for the purpose of being a stem cell 0:12:47.480 --> 0:12:51.040 donor to his sibling. It was the first time that 0:12:51.120 --> 0:12:54.199 PGD was being used not only to choose an embryo 0:12:54.280 --> 0:12:59.000 without genetic disease, but also to choose between unaffected embryos 0:12:59.200 --> 0:13:03.120 because of their genetic match to another person, and John is, 0:13:03.120 --> 0:13:06.120 the pioneer of this new combination, was acutely aware of 0:13:06.160 --> 0:13:07.439 these ethical dinammas. 0:13:08.880 --> 0:13:12.040 The principal ethical issues that we had to efface was 0:13:12.080 --> 0:13:18.880 that we were testing an embryo for certain genetic advantages 0:13:19.000 --> 0:13:23.400 to us and to the child that existed with fancorninemia, 0:13:23.880 --> 0:13:27.600 that is HLA match or tissue matching. But that tissue 0:13:27.600 --> 0:13:30.960 matching was of no inherent benefit to that baby to 0:13:31.000 --> 0:13:34.839 be born. You know, would this child be used as 0:13:35.000 --> 0:13:38.000 spare parts? These were the terms that were being thrown 0:13:38.040 --> 0:13:42.080 around in those days, which was obviously creating a public response. 0:13:43.559 --> 0:13:45.600 The other parts of all this were, you know, what 0:13:45.720 --> 0:13:49.600 is the concern that we were going down the slippery slope. Yes, 0:13:49.679 --> 0:13:54.000 first we were eliminating a disease. That was a good thing, 0:13:54.559 --> 0:13:57.040 but the tissue matching might just be the first foray 0:13:57.120 --> 0:14:01.760 into something more such as sex selection, such as choosing 0:14:01.840 --> 0:14:04.480 on other traits. All we wanted to do was to 0:14:04.520 --> 0:14:07.040 save the life of Henry. 0:14:07.280 --> 0:14:10.520 People outright accused John and his team of crossing lines 0:14:10.559 --> 0:14:14.840 that shouldn't be crossed. He found it difficult to respond, what. 0:14:14.720 --> 0:14:18.440 Does this mean when someone says, you know, you're playing god? 0:14:19.440 --> 0:14:22.360 How did it go from that conversation where we're trying 0:14:22.400 --> 0:14:25.520 to save a life? But what they were focused on 0:14:25.840 --> 0:14:29.280 was all those unborn embryos. 0:14:29.640 --> 0:14:32.280 When Laurie went public with Henry's story in two thousand 0:14:32.280 --> 0:14:35.360 and one, lots of people had opinions for her as well. 0:14:36.280 --> 0:14:39.320 Some people were like writing it like, why didn't these 0:14:39.360 --> 0:14:44.960 people just let these deformed children die? To me, that's 0:14:45.040 --> 0:14:50.440 unethical to not try to save your child, to not 0:14:51.040 --> 0:14:59.280 fight to avoid like catastrophic medical consequences, that is unethical. 0:15:01.200 --> 0:15:04.960 Coming up, I dived deeper into the ethical questions about 0:15:05.000 --> 0:15:16.680 save your siblings with my colleague Jeffrey Khan. Today, stem 0:15:16.720 --> 0:15:21.240 cell transplants using umbilical core blood have much higher success rates, 0:15:21.880 --> 0:15:25.240 and medical advances make it easier to find an acceptable 0:15:25.280 --> 0:15:29.280 match without the need for save your siblings. But back then, 0:15:29.600 --> 0:15:31.760 when it was all very new, it was hard to 0:15:31.840 --> 0:15:36.560 navigate the ethical implications that came up. When John Wagner 0:15:36.640 --> 0:15:39.600 found himself doing this novel work with the Nash family, 0:15:40.040 --> 0:15:42.840 the first family he worked with, he called up his 0:15:42.920 --> 0:15:46.640 colleague Jeffrey Kahan to get his take. At the time, 0:15:46.960 --> 0:15:49.720 jeff was the director of the Center for Bioethics at 0:15:49.720 --> 0:15:53.120 the University of Minnesota, where John was working to help 0:15:53.160 --> 0:15:57.480 save the lives of children with Fanconi anemia. Today he's 0:15:57.560 --> 0:16:01.520 my colleague and director of the John Hopkins Berman Institute 0:16:01.600 --> 0:16:06.640 of Bioethics. So as a parent, hearing Laurie's story really 0:16:07.240 --> 0:16:09.920 can't help but affect her on a personal level. And Jeff, 0:16:09.960 --> 0:16:12.160 I know you're a parent too, and I'm sure we 0:16:12.200 --> 0:16:15.400 can just completely relate to how Laurie and her husband 0:16:15.440 --> 0:16:17.200 would have just wanted to do everything they could to 0:16:17.280 --> 0:16:21.160 save their child, and also how they would have loved 0:16:21.200 --> 0:16:25.200 their child that they were trying to create as a 0:16:25.240 --> 0:16:27.880 result of all the rounds of IVF that Laurie went through. 0:16:29.080 --> 0:16:30.600 But maybe you don't even need to be a parent 0:16:30.640 --> 0:16:33.040 to understand that the journey that Laura and her husband 0:16:33.040 --> 0:16:33.400 went on. 0:16:34.040 --> 0:16:37.400 I think you're right, Lauren, And I will say on 0:16:37.440 --> 0:16:40.280 a personal level, for me, a little more insight in 0:16:40.360 --> 0:16:42.920 that I was on the faculty at the University of 0:16:42.920 --> 0:16:48.600 Minnesota when this case was unfolding and Laurie and her husband, Allen, 0:16:48.720 --> 0:16:53.800 and their kids came to Minneapolis for a treatment for Henry. 0:16:54.440 --> 0:16:57.800 I have two sons and they're more or less the 0:16:57.800 --> 0:17:02.800 same age as Henry and Jeff, and so it was 0:17:03.920 --> 0:17:07.240 very close to home for us. I will say, when 0:17:07.280 --> 0:17:09.679 this was unfolding, you sort of have to ask yourself, 0:17:09.720 --> 0:17:11.879 what would I do as a parent? Wouldn't I do 0:17:12.000 --> 0:17:14.960 anything I possibly could? How can you not try everything 0:17:15.000 --> 0:17:16.680 when you're trying to save the life of your child? 0:17:18.040 --> 0:17:22.320 Yeah, of course, So wow, you were really there at 0:17:22.320 --> 0:17:24.159 the time as this was all unfolding. 0:17:24.240 --> 0:17:24.520 JEF. 0:17:25.240 --> 0:17:28.240 So, before we go further into hearing more about the 0:17:28.920 --> 0:17:32.199 ethical elements of the case that unfolded, could you just 0:17:32.520 --> 0:17:36.200 tell us a bit about the existing technologies that were 0:17:36.240 --> 0:17:38.720 being used for the first time in a new way. 0:17:39.840 --> 0:17:43.240 There was an ability to make embryos outside the body 0:17:43.280 --> 0:17:45.600 through in virtual fertilization that was not such a new 0:17:45.600 --> 0:17:49.720 technology at this point, and there was a newer, younger 0:17:49.760 --> 0:17:56.000 technology called pre implantation genetic diagnosis or sometimes preimplantation genetic testing, 0:17:56.560 --> 0:18:00.320 where a single cell could be removed from a very 0:18:00.320 --> 0:18:05.080 early stage embryo by a biopsy. That technology had been 0:18:05.200 --> 0:18:08.560 used up to this point to determine whether an embryo 0:18:08.600 --> 0:18:11.840 was carrying a genetic disease, and a decision could then 0:18:11.880 --> 0:18:15.119 be made about whether to implant that embryo. What was 0:18:15.280 --> 0:18:19.880 novel about this was the combination of IVF plus PGD, 0:18:20.000 --> 0:18:22.520 not just to determine whether the embryo was going to 0:18:22.520 --> 0:18:26.800 carry a genetic disease in this case, fanconi anemia, but 0:18:27.280 --> 0:18:30.480 if the embryo was negative for fanconi, we need to 0:18:30.560 --> 0:18:34.000 test to see whether that embryo would develop into a 0:18:34.040 --> 0:18:36.919 baby whose core blood could then be used to be 0:18:37.280 --> 0:18:40.920 transplanted into and save the life of Henry in this 0:18:41.040 --> 0:18:43.520 story of the older brother. So that was the kind 0:18:43.560 --> 0:18:46.640 of aha, wow, nobody had thought about putting the technologies 0:18:47.040 --> 0:18:49.760 that existed. They weren't new technologies, but the combination of 0:18:49.840 --> 0:18:53.320 using them in this way was novel and started to 0:18:53.400 --> 0:18:56.680 ring all sorts of alarm bells. Frankly from an ethics. 0:18:56.320 --> 0:18:59.960 Perspective, So just to be clear, then with this prestidure, 0:19:00.240 --> 0:19:03.560 it's not Crisper's so there's no gene editing going on. 0:19:03.800 --> 0:19:06.679 It's purely the selection of the embryos. 0:19:07.240 --> 0:19:10.240 Right, So this is twenty years ago a little bit 0:19:10.240 --> 0:19:14.359 more actually, So there wasn't gene editing. CRISPERD hadn't been 0:19:14.440 --> 0:19:17.000 discovered yet, So it was really just a way of 0:19:17.040 --> 0:19:20.879 making as many embryos as you can, which required you know, 0:19:20.920 --> 0:19:23.679 going through IVF and then testing those embryos in the 0:19:23.680 --> 0:19:27.080 way that I had described. So it wasn't modifying embryos, 0:19:27.080 --> 0:19:30.119 but rather selecting embryos based on the genetic composition. 0:19:30.720 --> 0:19:34.800 But this new technique did raise really big ethical questions 0:19:34.800 --> 0:19:36.800 because it was the first time that it was being done. 0:19:37.520 --> 0:19:40.439 So could you just bring us back into that twenty 0:19:40.480 --> 0:19:42.879 years ago the first time it's happening. What were some 0:19:42.920 --> 0:19:45.560 of the discussions in terms of the ethics that were happening. 0:19:45.920 --> 0:19:50.920 The world of bioetics at that moment knew about pgdability 0:19:50.960 --> 0:19:54.960 to test embryos outside the body and was really analyzing 0:19:55.160 --> 0:19:58.439 the right kinds of things, or the acceptable kinds of 0:19:58.480 --> 0:20:01.639 things that this testing could be used for. So the 0:20:01.680 --> 0:20:05.000 idea was pretty clear that it makes sense to test 0:20:05.000 --> 0:20:08.080 embryos when you're trying to avoid the disease in the 0:20:08.160 --> 0:20:11.240 child that will be born. Now important to say, when 0:20:11.240 --> 0:20:13.760 you're testing embryos and choosing one versus another, you're not 0:20:13.840 --> 0:20:17.639 choosing the same eventual person with and without the disease, 0:20:17.680 --> 0:20:20.480 but you're effectively choosing one person versus another, right the 0:20:20.520 --> 0:20:25.399 future person. So the arguments were about where's a line 0:20:25.760 --> 0:20:29.760 between sort of obvious genetic disease that better for the 0:20:29.880 --> 0:20:34.399 child to avoid right having, versus something that isn't really 0:20:34.440 --> 0:20:37.919 a disease, or maybe worse that is sort of selecting 0:20:38.160 --> 0:20:41.720 to identify traits that we more thought of as enhancements 0:20:41.840 --> 0:20:47.520 or physical characteristics like eye color, hair color, height, intelligence, 0:20:47.880 --> 0:20:51.720 musical aptitude. What would stop people from using the same 0:20:52.000 --> 0:20:54.879 technique not to avoid having a child with cystic fibrosis 0:20:54.960 --> 0:20:57.879 or fancone anemia, but rather selecting an embryo that was 0:20:58.160 --> 0:21:01.960 most likely to be a musical right or have blue 0:21:02.000 --> 0:21:06.159 eyes right and blonde hair. It starts to sound very eugenic, 0:21:06.480 --> 0:21:09.200 and so that was the discussion. How do we make 0:21:09.240 --> 0:21:11.119 sure that the technology can be used in ways that 0:21:11.160 --> 0:21:16.239 seem appropriate and ethically acceptable, but prevent the kinds of 0:21:16.520 --> 0:21:19.440 you know, misuses from happening. When no one thought about 0:21:19.520 --> 0:21:22.960 this idea of using the same technology to both make 0:21:23.000 --> 0:21:24.880 sure you're having a child that will not be affected 0:21:24.880 --> 0:21:27.560 by a genetic disease, and while we're at it, let's 0:21:27.600 --> 0:21:30.600 make sure there's a genetic match for another sick child 0:21:30.600 --> 0:21:32.920 in the family. I mean, that seemed like wow, way 0:21:32.920 --> 0:21:35.280 out of bounce to us. No one had thought about that. 0:21:35.920 --> 0:21:39.040 So it wasn't that people were concerned of this procedure, 0:21:39.160 --> 0:21:41.920 as it was people were more concerned about what it 0:21:41.960 --> 0:21:43.560 would lead to in the future. 0:21:44.000 --> 0:21:45.960 It may sound a little quaint to talk about this now, 0:21:46.080 --> 0:21:49.200 you know, in twenty twenty three, because there are companies 0:21:49.200 --> 0:21:53.320 that are offering exactly what we're talking about. You can 0:21:53.480 --> 0:21:58.040 use genetic testing services on embryos that were created by 0:21:58.040 --> 0:22:01.720 IVF and the I'll tell you, you know, the likelihood of 0:22:02.080 --> 0:22:06.560 a whole range of things, disease likelihood, but also things 0:22:06.560 --> 0:22:08.920 that they claim are about, you know, traits that probably 0:22:09.000 --> 0:22:11.520 we would think of as not being diseases. And that's 0:22:11.680 --> 0:22:14.359 that's sort of what we were worried about happening twenty 0:22:14.359 --> 0:22:17.600 plus years ago, and trying to guide the technology to 0:22:17.640 --> 0:22:21.000 be used in responsible ways. Maybe we weren't so successful. 0:22:21.880 --> 0:22:25.199 So, Jeff, at the time when this was unfolding, did 0:22:25.280 --> 0:22:28.280 the reactions from the public about the ethics surprise you? 0:22:29.119 --> 0:22:33.080 This took up a lot of air in media. It 0:22:33.200 --> 0:22:38.439 was a very widely covered watch story, and you know 0:22:38.440 --> 0:22:40.920 a few things that were sort of a little surprising 0:22:40.960 --> 0:22:45.480 to me. One was, isn't this planning God? Actually, that 0:22:45.560 --> 0:22:48.520 was a question that many many journalists asked, and it 0:22:48.560 --> 0:22:51.520 was like, well, no, you're not modifying anything. You're just 0:22:51.600 --> 0:22:55.280 selecting embryos that are, you know, otherwise made, and you 0:22:55.720 --> 0:22:58.440 make decisions about which to implant all the time. This 0:22:58.520 --> 0:23:00.880 is sort of adding a layer of information about which 0:23:00.920 --> 0:23:04.080 to implant and why. So that was one. The second 0:23:04.400 --> 0:23:11.080 was aren't the parents wrongly motivated by deciding to do this? Right? 0:23:11.119 --> 0:23:15.760 They're having a child to save their other child, which 0:23:15.920 --> 0:23:18.720 to me sort of harked back to you know, everybody 0:23:18.760 --> 0:23:21.360 thinks about having children and why they have children, why 0:23:21.400 --> 0:23:24.960 they don't have children, and we don't quiz them about that. 0:23:25.400 --> 0:23:27.639 We don't say, tell us why you want to have children. 0:23:27.920 --> 0:23:31.160 It doesn't work like that, right, People have children for good, bad, 0:23:31.359 --> 0:23:33.600 or no reason. So it didn't make sense to me 0:23:34.200 --> 0:23:37.480 to sort of drill down so much on you the 0:23:37.600 --> 0:23:40.480 parents to say that their motivation was bad. Well, what 0:23:40.480 --> 0:23:42.359 do you mean Their motivation is trying to save the 0:23:42.480 --> 0:23:46.000 life of their very sick son in this case, that 0:23:46.040 --> 0:23:47.440 seems like a pretty good motivation. 0:23:48.200 --> 0:23:50.840 Yeah, And so that really ties into what I want 0:23:50.840 --> 0:23:56.280 to ask you next about the conflict between ethical concerns 0:23:56.320 --> 0:24:01.199 and society's perspectives and then individuals rights as families to 0:24:01.280 --> 0:24:03.960 decide what to do about their own family. Could you 0:24:04.040 --> 0:24:06.639 talk a bit about that tension, how it plays out 0:24:06.760 --> 0:24:08.159 in this case in particular. 0:24:08.480 --> 0:24:11.760 Yeah, this case I think is a very unusual one 0:24:12.240 --> 0:24:16.919 because of that, the sort of foundational commitments that it 0:24:17.000 --> 0:24:20.520 puts in conflict are pretty unusual to see them, you know, 0:24:20.800 --> 0:24:23.240 put together this way. So we talked to a fair 0:24:23.240 --> 0:24:27.080 amount about when, if ever, can we restrict people's right 0:24:27.160 --> 0:24:30.760 to pro create, to have children, and you know, we 0:24:30.920 --> 0:24:33.720 don't do that in liberal societies, and that's sort of 0:24:33.840 --> 0:24:36.480 a commitment that we you know, some of the recent 0:24:36.480 --> 0:24:40.840 court decisions notwithstanding, there's a long history of people getting 0:24:40.880 --> 0:24:44.400 to decide for themselves, right, So we're very very careful 0:24:44.920 --> 0:24:50.520