1 00:00:03,240 --> 00:00:05,960 Speaker 1: I was yearning for something so deep that I felt 2 00:00:05,960 --> 00:00:08,959 Speaker 1: like it was impossible to get to. I just felt 3 00:00:09,000 --> 00:00:12,080 Speaker 1: like I was in kind of like a hole that 4 00:00:12,119 --> 00:00:15,239 Speaker 1: I couldn't get out of because I was ready to 5 00:00:15,280 --> 00:00:17,520 Speaker 1: start a family and I wanted to be able to 6 00:00:18,200 --> 00:00:19,320 Speaker 1: have our own babies. 7 00:00:20,600 --> 00:00:23,319 Speaker 2: In twenty fifteen, Jen Dingle went through a period of 8 00:00:23,360 --> 00:00:26,799 Speaker 2: intense depression. She was ready to start a family with 9 00:00:26,840 --> 00:00:30,360 Speaker 2: her husband, and she wanted the experience of being pregnant, 10 00:00:31,120 --> 00:00:34,120 Speaker 2: but she was grieving the fact that that could never happen. 11 00:00:34,880 --> 00:00:37,360 Speaker 1: Being a mom and having my own kids has always 12 00:00:37,400 --> 00:00:39,600 Speaker 1: been a dream, but I knew that it wasn't it 13 00:00:39,640 --> 00:00:40,839 Speaker 1: wouldn't be possible for me. 14 00:00:41,720 --> 00:00:45,680 Speaker 2: Jen has a rare congenital disorder called Maya Rokitanski Cousta 15 00:00:45,680 --> 00:00:49,760 Speaker 2: Houser syndrome m r K eight for short. She was 16 00:00:49,800 --> 00:00:53,680 Speaker 2: born with ovaries but no cervix or uterus. She first 17 00:00:53,760 --> 00:00:57,280 Speaker 2: became aware of her diagnosis when she was fourteen, but 18 00:00:57,360 --> 00:00:59,680 Speaker 2: Jen says at the time she had trouble wrapping her 19 00:00:59,680 --> 00:01:01,480 Speaker 2: head around what it all meant. 20 00:01:02,440 --> 00:01:05,839 Speaker 1: It was sad, but at the same time, being fourteen, 21 00:01:05,920 --> 00:01:08,800 Speaker 1: you're not really thinking about carrying. 22 00:01:08,360 --> 00:01:09,240 Speaker 3: Your own child. 23 00:01:09,480 --> 00:01:13,199 Speaker 1: And also, I feel like at that age, you don't 24 00:01:13,360 --> 00:01:17,440 Speaker 1: really fully understand how your body works all the way. 25 00:01:17,520 --> 00:01:20,200 Speaker 1: And so for me, whenever I got that news, I 26 00:01:20,360 --> 00:01:23,399 Speaker 1: actually thought to myself, well, maybe my uterus just hasn't 27 00:01:23,440 --> 00:01:27,119 Speaker 1: grown in, and maybe my uterus will just miraculously grow 28 00:01:27,160 --> 00:01:31,080 Speaker 1: in by itself. And so at that age, I think 29 00:01:31,160 --> 00:01:34,800 Speaker 1: I didn't really realize what it really truly meant for me. 30 00:01:35,840 --> 00:01:39,000 Speaker 2: When Jen got older, I married her husband. They started 31 00:01:39,040 --> 00:01:42,119 Speaker 2: looking into their options for how to have a biological child. 32 00:01:43,000 --> 00:01:45,920 Speaker 2: A fertility doctor told them that their only option was 33 00:01:45,959 --> 00:01:50,240 Speaker 2: to create embryos using in vitro fertilization and then find 34 00:01:50,240 --> 00:01:54,000 Speaker 2: a gestational carrier to give birth to the baby, But 35 00:01:54,120 --> 00:01:57,640 Speaker 2: the couple wasn't sure they could afford it. Gestational carriers 36 00:01:57,640 --> 00:02:01,760 Speaker 2: can be prohibitively expensive. Anyway, it still wasn't what Jen 37 00:02:01,920 --> 00:02:06,880 Speaker 2: really wanted. Then one day, the fertility doctor made an 38 00:02:06,960 --> 00:02:09,760 Speaker 2: offhand comment that changed the course of Jen's life. 39 00:02:10,560 --> 00:02:13,919 Speaker 1: She said, I remember hearing something about a uterus transplant 40 00:02:14,000 --> 00:02:17,280 Speaker 1: happening somewhere overseas, And she said, but I would never 41 00:02:17,360 --> 00:02:20,280 Speaker 1: count on that happening here in the States, because it's way, 42 00:02:20,320 --> 00:02:21,800 Speaker 1: way too risky. 43 00:02:22,040 --> 00:02:25,679 Speaker 2: But to Jen, a uterus transplant sounded like the perfect 44 00:02:25,680 --> 00:02:29,240 Speaker 2: solution to her problem, despite whatever risks her doctor may 45 00:02:29,240 --> 00:02:32,840 Speaker 2: have been referring to. When she got home from the appointment, 46 00:02:32,960 --> 00:02:37,320 Speaker 2: Jen immediately began searching uterus transplants online. She found the 47 00:02:37,320 --> 00:02:40,360 Speaker 2: transplant center that the doctor had mentioned. It was in 48 00:02:40,440 --> 00:02:43,239 Speaker 2: the UK, but when she reached out to the center, 49 00:02:43,600 --> 00:02:45,960 Speaker 2: she found out that they weren't ready to offer them 50 00:02:46,000 --> 00:02:49,920 Speaker 2: to patients. Yet she continued to feel caught in a 51 00:02:50,000 --> 00:02:53,240 Speaker 2: dark depression. She opened up to her mom when she 52 00:02:53,320 --> 00:02:55,520 Speaker 2: was back home in Dallas, Texas for a visit. 53 00:02:56,680 --> 00:02:59,640 Speaker 1: And I remember sitting down talking with my mom and 54 00:02:59,680 --> 00:03:03,640 Speaker 1: just to her, you know, I've just been sad lately. 55 00:03:03,880 --> 00:03:05,680 Speaker 1: I want to be able to start a family, but 56 00:03:05,760 --> 00:03:08,919 Speaker 1: surrogacy is just way too expensive and I don't know 57 00:03:09,080 --> 00:03:12,040 Speaker 1: if it's even going to be possible. And that's when 58 00:03:12,080 --> 00:03:14,040 Speaker 1: she's like, you're going to become a mom. I know, 59 00:03:14,160 --> 00:03:16,920 Speaker 1: I feel it in my heart. You will become a mom. 60 00:03:17,240 --> 00:03:20,919 Speaker 1: And that's nice for her to tell me, but it's 61 00:03:20,960 --> 00:03:23,320 Speaker 1: just hard to believe those things when you've been told 62 00:03:23,360 --> 00:03:24,760 Speaker 1: that it's like impossible. 63 00:03:25,720 --> 00:03:28,680 Speaker 2: Jen didn't bring up utrius transplants with her mom that day. 64 00:03:29,320 --> 00:03:32,520 Speaker 2: It seemed like too much of a distant possibility. But 65 00:03:32,639 --> 00:03:35,920 Speaker 2: then a week after that conversation, she got a call 66 00:03:36,000 --> 00:03:36,640 Speaker 2: from her mom. 67 00:03:37,160 --> 00:03:39,240 Speaker 1: She's like, you are never going to believe what I've 68 00:03:39,240 --> 00:03:41,760 Speaker 1: seen on the news. I'm like what, And she said, 69 00:03:41,880 --> 00:03:45,280 Speaker 1: Baylor in Dallas is going to be doing a uterus 70 00:03:45,360 --> 00:03:48,760 Speaker 1: transplant trial for ten women like you who were either 71 00:03:48,880 --> 00:03:52,040 Speaker 1: born without a uterus or who lost their uterus due 72 00:03:52,080 --> 00:03:54,880 Speaker 1: to cancer or something like that. I'm like, I gotta go, 73 00:03:55,040 --> 00:03:57,360 Speaker 1: I gotta go. I didn't even let her finish telling 74 00:03:57,400 --> 00:03:58,880 Speaker 1: me what all it was about. 75 00:04:01,560 --> 00:04:04,880 Speaker 2: I'm Lauren Aurora Hutchinson. I'm the director of the Idea's 76 00:04:04,920 --> 00:04:09,040 Speaker 2: Lab at the Johns Hopkins Berman Institute of Bioethics. On 77 00:04:09,160 --> 00:04:14,480 Speaker 2: today's episode Uterus transplants, The first one that resulted in 78 00:04:14,520 --> 00:04:17,640 Speaker 2: a healthy baby being born was performed in Sweden in 79 00:04:17,720 --> 00:04:22,200 Speaker 2: twenty thirteen. Since then, over one hundred uterous transplants have 80 00:04:22,279 --> 00:04:25,599 Speaker 2: taken place, and over a third of those were performed 81 00:04:25,640 --> 00:04:30,760 Speaker 2: in the US. Uterus transplants can offer a life changing 82 00:04:30,760 --> 00:04:35,440 Speaker 2: opportunity to individuals with certain types of infertility, but they 83 00:04:35,480 --> 00:04:39,240 Speaker 2: do come with risk, and they will cost a lot 84 00:04:39,240 --> 00:04:42,760 Speaker 2: of money, and there are other ways to build a family. 85 00:04:44,080 --> 00:04:47,279 Speaker 2: What are the ethics of performing an organ transplant in 86 00:04:47,400 --> 00:04:50,800 Speaker 2: order to have a baby. Is it okay to transplant 87 00:04:50,920 --> 00:04:55,200 Speaker 2: organs that aren't life saving? From pushing industries and the 88 00:04:55,279 --> 00:04:59,720 Speaker 2: Johns Hopkins Berman Institute of Bioethics, This is playing god. 89 00:05:07,440 --> 00:05:10,520 Speaker 2: Jen couldn't believe her luck. Of all the hospitals in 90 00:05:10,560 --> 00:05:12,760 Speaker 2: the world that could have been starting up a uterus 91 00:05:12,839 --> 00:05:18,000 Speaker 2: transplant program, it was Baylor University Medical Center, practically in 92 00:05:18,080 --> 00:05:24,040 Speaker 2: her old backyard. Jen rushed to apply the application, laid 93 00:05:24,080 --> 00:05:28,160 Speaker 2: out the risk factors and requirements. After the transplant, recipients 94 00:05:28,160 --> 00:05:32,000 Speaker 2: would have to go on immunosuppressants and be extremely careful 95 00:05:32,080 --> 00:05:35,440 Speaker 2: not to spend time around someone who was sick, and 96 00:05:35,880 --> 00:05:39,320 Speaker 2: the transplant center emphasized that the procedure was not a 97 00:05:39,400 --> 00:05:43,640 Speaker 2: guarantee of a pregnancy. The first three times Baylor had 98 00:05:43,680 --> 00:05:47,960 Speaker 2: attempted the transplant so far it hadn't worked. All three 99 00:05:48,120 --> 00:05:51,560 Speaker 2: uterresses had to be removed because of an insufficient blood flough. 100 00:05:52,839 --> 00:05:55,680 Speaker 2: That made Jen a bit nervous, but she was undeterred. 101 00:05:58,000 --> 00:06:01,800 Speaker 1: I felt like this was my chance, Like this is 102 00:06:01,880 --> 00:06:04,440 Speaker 1: a once in a lifetime opportunity. 103 00:06:04,880 --> 00:06:08,600 Speaker 2: After a few months of waiting, Jen's application was approved. 104 00:06:08,960 --> 00:06:12,279 Speaker 2: After years of dreaming, about carrying her own child. She 105 00:06:12,400 --> 00:06:16,360 Speaker 2: felt like she might actually have a shot. Doctors explained 106 00:06:16,400 --> 00:06:18,560 Speaker 2: that the first step was to begin the search for 107 00:06:18,600 --> 00:06:21,800 Speaker 2: a living donor. The doctors at Baylor told Jen they 108 00:06:21,839 --> 00:06:24,839 Speaker 2: had to put out a call for anonymous, altruistic donors, 109 00:06:25,600 --> 00:06:28,400 Speaker 2: people who were willing to donate their uterus to a 110 00:06:28,480 --> 00:06:33,400 Speaker 2: complete stranger. Jen also asked her family members and friends, 111 00:06:33,640 --> 00:06:36,400 Speaker 2: but for various reasons, none of them were in a 112 00:06:36,440 --> 00:06:40,600 Speaker 2: position to donate. While she was waiting for the clinic 113 00:06:40,640 --> 00:06:44,320 Speaker 2: to identify a compatible donor, Jen and her husband flew 114 00:06:44,400 --> 00:06:47,520 Speaker 2: back to Texas to do a round of IVF. They 115 00:06:47,560 --> 00:06:51,320 Speaker 2: got five embryos. A month later, the clinic told Jen 116 00:06:51,520 --> 00:06:55,520 Speaker 2: they'd found a donor and she was a match. For 117 00:06:55,600 --> 00:06:58,679 Speaker 2: privacy reasons, the hospital couldn't share much about the woman, 118 00:06:59,240 --> 00:07:01,320 Speaker 2: just that she was from the area and had four 119 00:07:01,400 --> 00:07:05,000 Speaker 2: kids herself, but the hospital did allow the two women 120 00:07:05,080 --> 00:07:07,080 Speaker 2: to exchange cards through their nurses. 121 00:07:08,320 --> 00:07:10,920 Speaker 1: I felt like I had so much to tell her, 122 00:07:12,040 --> 00:07:16,720 Speaker 1: and a pen and a card just wasn't enough. It 123 00:07:16,800 --> 00:07:19,840 Speaker 1: was just very selfless for someone a stranger to do 124 00:07:19,880 --> 00:07:23,840 Speaker 1: something like that for someone that they don't know, And 125 00:07:23,880 --> 00:07:27,040 Speaker 1: I just couldn't think her enough, and her family for 126 00:07:27,160 --> 00:07:30,040 Speaker 1: letting her go under the knife or somebody. They have 127 00:07:30,160 --> 00:07:32,600 Speaker 1: no blue who they're doing it for. 128 00:07:33,600 --> 00:07:36,320 Speaker 2: The transplant took place just a few weeks later. 129 00:07:38,520 --> 00:07:42,080 Speaker 1: After they woke me up from the surgery. I remember 130 00:07:42,120 --> 00:07:45,120 Speaker 1: them rolling me to ICU, and that was whenever I 131 00:07:45,200 --> 00:07:48,000 Speaker 1: first opened my eyes, and I just remember laying there 132 00:07:48,080 --> 00:07:51,320 Speaker 1: and watching the lights above me as we're walking down 133 00:07:51,360 --> 00:07:53,920 Speaker 1: the hallway, and the first thing I said. 134 00:07:53,840 --> 00:07:55,120 Speaker 3: Was do I have a uterus? 135 00:07:55,400 --> 00:07:57,640 Speaker 1: And the nurse who was pushing me look down and 136 00:07:58,080 --> 00:08:00,440 Speaker 1: they smiled and they're like, you have a uter And 137 00:08:00,480 --> 00:08:03,840 Speaker 1: I just remember feeling so happy and putting my hands 138 00:08:03,840 --> 00:08:04,560 Speaker 1: on my stomach. 139 00:08:05,360 --> 00:08:08,960 Speaker 2: The surgery seemed to have gone well, but one month later, 140 00:08:09,240 --> 00:08:12,720 Speaker 2: Jen noticed that she was having some spotting. She called 141 00:08:12,720 --> 00:08:16,000 Speaker 2: her doctor, who asked her to describe the bleeding. 142 00:08:16,080 --> 00:08:18,240 Speaker 1: And she's like, you know, I think you're starting your 143 00:08:18,320 --> 00:08:21,240 Speaker 1: very first period, and I was like, really. 144 00:08:22,320 --> 00:08:25,720 Speaker 2: At age twenty seven, Jen had gotten her period for 145 00:08:25,760 --> 00:08:30,320 Speaker 2: the first time. The surgery had worked. Six months after 146 00:08:30,360 --> 00:08:33,320 Speaker 2: the transplant, Jen went to the fertility clinic to have 147 00:08:33,400 --> 00:08:37,640 Speaker 2: one of her frozen embryos transferred into a new uterus. 148 00:08:38,000 --> 00:08:43,360 Speaker 1: After having the embryo transfer, I just I didn't want 149 00:08:43,400 --> 00:08:45,240 Speaker 1: to move. I kind of just wanted to stay in 150 00:08:45,280 --> 00:08:48,120 Speaker 1: one spot until we got the word to know if 151 00:08:48,120 --> 00:08:48,880 Speaker 1: it had worked. 152 00:08:48,880 --> 00:08:50,479 Speaker 3: I just I was so cautious. 153 00:08:51,760 --> 00:08:54,520 Speaker 2: Nine days later, she went in for testing to see 154 00:08:54,520 --> 00:08:56,040 Speaker 2: if the embryo had implanted. 155 00:08:56,520 --> 00:08:57,040 Speaker 3: It had. 156 00:08:57,880 --> 00:09:03,920 Speaker 1: Jen was pregnant, and I just, I can't believe like that. 157 00:09:04,120 --> 00:09:08,040 Speaker 1: That's something that I had always dreamed about, and it happened. 158 00:09:08,160 --> 00:09:08,760 Speaker 1: It worked. 159 00:09:10,280 --> 00:09:13,600 Speaker 2: Her pregnancy went smoothly, and the experience of carrying a 160 00:09:13,679 --> 00:09:16,280 Speaker 2: child was everything Jen had hoped it would be. 161 00:09:16,920 --> 00:09:20,920 Speaker 1: I had an amazing experience being pregnant. I loved being 162 00:09:20,960 --> 00:09:23,960 Speaker 1: able to look at my belly grow and feel the 163 00:09:24,000 --> 00:09:26,720 Speaker 1: baby move and things like that. 164 00:09:27,520 --> 00:09:30,680 Speaker 2: In February twenty eighteen, more than three years after she 165 00:09:30,760 --> 00:09:35,280 Speaker 2: had first started learning about uterus transplants, Jen gave birth 166 00:09:35,320 --> 00:09:38,920 Speaker 2: to a healthy daughter, Jea, in a planned C section. 167 00:09:39,520 --> 00:09:42,720 Speaker 2: But Jen's story doesn't end there. Two years after she 168 00:09:42,800 --> 00:09:46,559 Speaker 2: had her daughter, Jia, in February twenty twenty, Jen gave 169 00:09:46,600 --> 00:09:50,440 Speaker 2: birth to a second baby, girl, Jade, That made Jen 170 00:09:50,520 --> 00:09:53,280 Speaker 2: the first woman in the US to have two children 171 00:09:53,360 --> 00:09:57,880 Speaker 2: with the transplanted uterus. The same day, Jade was born 172 00:09:58,160 --> 00:10:01,640 Speaker 2: at the recommendation of her medical team, gens uterus was 173 00:10:01,679 --> 00:10:06,760 Speaker 2: surgically removed, but by then it had changed her life forever. 174 00:10:08,160 --> 00:10:12,480 Speaker 2: Despite the obvious upsides of uterus transplants, the procedure has 175 00:10:12,520 --> 00:10:16,800 Speaker 2: still raised a number of tricky ethical issues. Doctor Ruth 176 00:10:16,840 --> 00:10:20,640 Speaker 2: Ferrel is an obgyn and bioethicist who has been at 177 00:10:20,640 --> 00:10:24,880 Speaker 2: the forefront of these issues. She's Vice Chair of Research 178 00:10:25,000 --> 00:10:28,720 Speaker 2: for the Obgyn and Women's Health Institute. As a Cleveland 179 00:10:28,800 --> 00:10:32,880 Speaker 2: clinic where the first ever us uterus transplant happened in 180 00:10:32,920 --> 00:10:37,320 Speaker 2: twenty sixteen, Ruth led the ethics discussions leading up to 181 00:10:37,360 --> 00:10:41,439 Speaker 2: that successful transplant. She helped to explain why people might 182 00:10:41,520 --> 00:10:45,400 Speaker 2: choose a uterus transplant that is invasive and expensive over 183 00:10:45,480 --> 00:10:48,760 Speaker 2: other options like adopting or using a gestational carrier. 184 00:10:51,840 --> 00:10:54,360 Speaker 4: There are other approaches to have families, and they are 185 00:10:54,520 --> 00:10:58,200 Speaker 4: very important and valid ways to build families. Yet for 186 00:10:58,240 --> 00:11:03,040 Speaker 4: some individuals, either because of local legal regulations or cultural 187 00:11:03,200 --> 00:11:08,559 Speaker 4: or religious policies or practices, that gestational surrogacy or adoption 188 00:11:08,679 --> 00:11:13,040 Speaker 4: are not permitted or accessible, So uterine transplant is another option. 189 00:11:14,320 --> 00:11:18,520 Speaker 2: The prestigious starts with the donated uters becoming available, and 190 00:11:18,600 --> 00:11:20,079 Speaker 2: that can happen in two ways. 191 00:11:21,400 --> 00:11:26,160 Speaker 4: One is a living donor model, where individual will make 192 00:11:26,200 --> 00:11:28,600 Speaker 4: the choice to have the uters removed and then give 193 00:11:28,640 --> 00:11:31,839 Speaker 4: it to another individual who's considering uterine transplant. The other 194 00:11:31,880 --> 00:11:33,440 Speaker 4: approach is a deceased donor model. 195 00:11:34,040 --> 00:11:37,720 Speaker 2: There are several ethical issues to consider in the donation process, 196 00:11:38,320 --> 00:11:41,400 Speaker 2: regardless of whether it is a living or deceased donor. 197 00:11:41,760 --> 00:11:43,960 Speaker 4: With respect to living donors, we think about what maybe 198 00:11:44,000 --> 00:11:47,000 Speaker 4: the factors to deciding to donate their uterus, how do 199 00:11:47,040 --> 00:11:51,280 Speaker 4: we ensure those decisions are made voluntarily and using informed consent. 200 00:11:51,920 --> 00:11:54,920 Speaker 4: Or an individual who has deceased and as donate their organs, 201 00:11:55,000 --> 00:11:56,560 Speaker 4: we also have to think about what they would have 202 00:11:56,640 --> 00:12:00,200 Speaker 4: wanted and seeking permission and authorization from their families if 203 00:12:00,200 --> 00:12:02,240 Speaker 4: the uterus is used in this way. 204 00:12:03,040 --> 00:12:06,760 Speaker 2: Unlike deceased donors, living donors take some degree of risk 205 00:12:07,040 --> 00:12:11,280 Speaker 2: to their health. Like any invasive surgery, there's the potential 206 00:12:11,320 --> 00:12:13,800 Speaker 2: for donors to get an infection or lose a lot 207 00:12:13,880 --> 00:12:16,800 Speaker 2: of blood, and that also has to be taken into 208 00:12:16,880 --> 00:12:20,680 Speaker 2: consideration in an ethical analysis of uterist transplants. 209 00:12:21,360 --> 00:12:24,080 Speaker 4: When you donate your uterus as a living donor, it's 210 00:12:24,160 --> 00:12:27,960 Speaker 4: more than just a standard hysterectomy. The reason why is 211 00:12:28,480 --> 00:12:31,079 Speaker 4: when you remove the uterus for a transplant reason, you're 212 00:12:31,120 --> 00:12:33,440 Speaker 4: trying to also get a lot of the tissue next 213 00:12:33,440 --> 00:12:35,720 Speaker 4: to it getting some of the blood vessels because that's 214 00:12:35,720 --> 00:12:39,480 Speaker 4: important for having a good connection in the recipient. When 215 00:12:39,480 --> 00:12:41,440 Speaker 4: you get more tissue, there can be some injury to 216 00:12:41,480 --> 00:12:43,520 Speaker 4: the organs in the pelvis, and that can either lead 217 00:12:43,559 --> 00:12:45,640 Speaker 4: to a short term or long term complication. 218 00:12:46,600 --> 00:12:49,920 Speaker 2: Sometimes the donors are family members of the recipient, a 219 00:12:49,920 --> 00:12:54,119 Speaker 2: sibling or even a mother That can also raise questions. 220 00:12:54,720 --> 00:12:58,440 Speaker 4: There may be factors such as pressure, coersion, someone's sense 221 00:12:58,520 --> 00:13:01,720 Speaker 4: of duty or obligation help a family member or a relative, 222 00:13:02,360 --> 00:13:03,960 Speaker 4: So we need to think about those and do as 223 00:13:04,040 --> 00:13:06,480 Speaker 4: much as we can ahead of time to ensure that 224 00:13:06,880 --> 00:13:10,760 Speaker 4: all parties are informed of what the procedure entails and 225 00:13:10,800 --> 00:13:15,880 Speaker 4: to reduce any potential influence of coercion or bias in 226 00:13:15,960 --> 00:13:19,040 Speaker 4: that and the centers that are undergoing these studies or 227 00:13:19,360 --> 00:13:23,440 Speaker 4: taking on these procedures do a very meticulous job of 228 00:13:24,760 --> 00:13:26,800 Speaker 4: informed consent for all members of the group. 229 00:13:27,760 --> 00:13:30,800 Speaker 2: There's a growing demand for this procedure, which allows someone 230 00:13:30,840 --> 00:13:33,360 Speaker 2: to carry their own child who would otherwise not be 231 00:13:33,440 --> 00:13:38,000 Speaker 2: able to. Right now, uterus transplants are mainly available through 232 00:13:38,080 --> 00:13:42,840 Speaker 2: research programs one day when they do become available more widely, 233 00:13:43,559 --> 00:13:46,560 Speaker 2: getting one maybe out of reach for most of those 234 00:13:46,760 --> 00:13:51,240 Speaker 2: who need or want one. Many people already face limited 235 00:13:51,280 --> 00:13:55,280 Speaker 2: access to fertility treatments because few are covered by insurance, 236 00:13:55,640 --> 00:13:58,600 Speaker 2: which raises questions of who exactly will be able to 237 00:13:58,640 --> 00:13:59,880 Speaker 2: afford this surgery. 238 00:14:01,200 --> 00:14:05,640 Speaker 4: Part of the core of this is identifying that infertility 239 00:14:05,760 --> 00:14:08,360 Speaker 4: is a condition, is a disease for which there should 240 00:14:08,360 --> 00:14:10,760 Speaker 4: be coverage. Also, how to all play it all depend 241 00:14:10,840 --> 00:14:12,719 Speaker 4: upon the country and what kind of insurance they have, 242 00:14:12,760 --> 00:14:16,240 Speaker 4: whether it's a or nationalized healthcare system or system like 243 00:14:16,280 --> 00:14:19,520 Speaker 4: here in the US, And so there's still many unknowns 244 00:14:19,560 --> 00:14:22,560 Speaker 4: about how much this will cost and how will be 245 00:14:22,600 --> 00:14:26,400 Speaker 4: paid for. So that's something which is still being studied, 246 00:14:26,760 --> 00:14:28,800 Speaker 4: but it's a core part of doing research and you 247 00:14:28,880 --> 00:14:33,800 Speaker 4: doing transplant understanding how we can ensure that equity issues 248 00:14:34,120 --> 00:14:35,640 Speaker 4: are not perpetuated. 249 00:14:36,920 --> 00:14:39,600 Speaker 2: Coming up, I'll speak with the person who knows more 250 00:14:39,640 --> 00:14:43,720 Speaker 2: about uterus transplants than perhaps anyone in the world. She 251 00:14:43,880 --> 00:14:47,000 Speaker 2: headed up the team that gave Jen her transplant, and 252 00:14:47,040 --> 00:14:49,520 Speaker 2: she was right there in the room when Jen had 253 00:14:49,520 --> 00:14:53,200 Speaker 2: her children. She and her colleagues are already at work 254 00:14:53,240 --> 00:14:56,280 Speaker 2: on the next surgical breakthrough in uterrous transplants. 255 00:14:56,960 --> 00:15:02,160 Speaker 3: There is no clear, you know, medical reason why transgender 256 00:15:02,160 --> 00:15:04,880 Speaker 3: females couldn't undergo a uterus transplant. 257 00:15:05,760 --> 00:15:14,880 Speaker 2: That's after the break Lisa Johannson is a medical director 258 00:15:14,960 --> 00:15:19,400 Speaker 2: a uteris transplant at Baylor University Medical Center in Dallas, Texas. 259 00:15:20,040 --> 00:15:24,080 Speaker 2: She's been working on utros transplants for fifteen years. It 260 00:15:24,120 --> 00:15:26,520 Speaker 2: all started for Lisa when she was a resident in 261 00:15:26,560 --> 00:15:31,479 Speaker 2: gynecology and obstetrics in Sweden. One of her professors suggested 262 00:15:31,520 --> 00:15:34,720 Speaker 2: she join his lab and make uterus transplants the focus 263 00:15:34,760 --> 00:15:35,520 Speaker 2: of her PhD. 264 00:15:36,400 --> 00:15:39,880 Speaker 3: First, I thought he was absolutely insane. I had never 265 00:15:39,920 --> 00:15:42,600 Speaker 3: heard about it and it was completely new to me 266 00:15:42,800 --> 00:15:45,840 Speaker 3: the concept. But as I kind of learned more about it, 267 00:15:45,960 --> 00:15:49,920 Speaker 3: I decided that this was something exciting and we started 268 00:15:49,920 --> 00:15:56,000 Speaker 3: them performing the rodent surgeries and then pig models, sheep models, 269 00:15:56,040 --> 00:15:58,560 Speaker 3: and then as the last kind of step before we 270 00:15:58,560 --> 00:16:03,120 Speaker 3: could do humans, did baboon studies as well. So when 271 00:16:03,160 --> 00:16:06,440 Speaker 3: I presented my thesis this was back in twenty twelve, 272 00:16:07,440 --> 00:16:09,920 Speaker 3: a couple of months after that we started with the 273 00:16:09,920 --> 00:16:12,640 Speaker 3: first human trial of uterus transplant in the world. 274 00:16:13,560 --> 00:16:18,040 Speaker 2: Wow, very pioneering. So could you tell me what your 275 00:16:18,080 --> 00:16:21,400 Speaker 2: favorite part of specializing in this area is now. 276 00:16:21,400 --> 00:16:24,720 Speaker 3: My favorite part is that we now actually can sit 277 00:16:24,800 --> 00:16:28,920 Speaker 3: down with patients that are they lost their uterus, are 278 00:16:28,960 --> 00:16:32,080 Speaker 3: they're born without uters, and we can actually tell them 279 00:16:32,280 --> 00:16:35,720 Speaker 3: that there is options for you. You can go through surrogacy, 280 00:16:35,800 --> 00:16:38,040 Speaker 3: you can go through adoption, but there's also an option 281 00:16:38,200 --> 00:16:42,040 Speaker 3: to actually treat the diagnosis you have and you can 282 00:16:42,120 --> 00:16:45,800 Speaker 3: experience gestation and childbirth. And I never thought that we 283 00:16:45,800 --> 00:16:48,280 Speaker 3: were going to be able to say that to our patients. 284 00:16:48,520 --> 00:16:51,080 Speaker 2: Wow, that's incredible to have seen that right from the 285 00:16:51,120 --> 00:16:53,640 Speaker 2: process of operating on animals and then go through to 286 00:16:53,680 --> 00:16:56,200 Speaker 2: be able to tell someone that they could have a 287 00:16:56,240 --> 00:17:00,480 Speaker 2: baby in that way. That's amazing. So where were you 288 00:17:00,560 --> 00:17:02,040 Speaker 2: then when Jen gave birth? 289 00:17:02,240 --> 00:17:06,000 Speaker 3: I was right there delivering the baby, So I think 290 00:17:06,040 --> 00:17:08,880 Speaker 3: all of our team members were in that delivery room, 291 00:17:09,040 --> 00:17:12,080 Speaker 3: and you know, just being there for her, for her family, 292 00:17:12,600 --> 00:17:13,320 Speaker 3: it's worth it. 293 00:17:13,440 --> 00:17:16,960 Speaker 2: Right there, that must have been a powerful moment. So, 294 00:17:17,040 --> 00:17:19,760 Speaker 2: going back to when you got started with uterus transplants, 295 00:17:20,000 --> 00:17:22,840 Speaker 2: what types of ethical questions were you and other researchers 296 00:17:22,840 --> 00:17:23,840 Speaker 2: considering back then? 297 00:17:24,400 --> 00:17:27,439 Speaker 3: The ethics around this has changed a lot. So in 298 00:17:27,520 --> 00:17:31,120 Speaker 3: the beginning when we did this in animals, the ethics 299 00:17:31,200 --> 00:17:35,119 Speaker 3: was very much focused on is this doable, this procedure, 300 00:17:35,600 --> 00:17:37,440 Speaker 3: is it worth it? Why are we doing it? Because 301 00:17:37,440 --> 00:17:40,199 Speaker 3: there are other options we will always get compared with 302 00:17:40,760 --> 00:17:45,520 Speaker 3: surrogacy and adoption. But then when we started having offspring 303 00:17:45,600 --> 00:17:48,040 Speaker 3: from the animal research and when we started having babies 304 00:17:48,400 --> 00:17:52,760 Speaker 3: from the human trials, the ethics kind of changed. We 305 00:17:52,840 --> 00:17:56,639 Speaker 3: more came into ethics around who should we do this for, 306 00:17:57,040 --> 00:17:59,760 Speaker 3: how should we do this procedure to minimize the risk 307 00:17:59,800 --> 00:18:03,920 Speaker 3: for the recipients. Which donors should we use? Is it's 308 00:18:04,119 --> 00:18:07,080 Speaker 3: okay to use living donors for this transplant that is 309 00:18:07,080 --> 00:18:11,440 Speaker 3: not life necessary and it's only a quality of life enhancing. 310 00:18:11,880 --> 00:18:15,359 Speaker 3: So the ethical field has been very interesting to follow, 311 00:18:15,760 --> 00:18:18,679 Speaker 3: but it's evolving as we of all the surgical field. 312 00:18:19,400 --> 00:18:21,960 Speaker 2: Yeah, So one thing that surprised me about Gen's story 313 00:18:22,280 --> 00:18:24,800 Speaker 2: was that after she had her second baby, her uterus 314 00:18:24,920 --> 00:18:29,080 Speaker 2: was removed. Why is this transplant only kept temporarily rather 315 00:18:29,119 --> 00:18:30,440 Speaker 2: than leaving it in place. 316 00:18:31,280 --> 00:18:34,679 Speaker 3: At the moment the recipient of uterus will have to 317 00:18:34,720 --> 00:18:39,640 Speaker 3: take umnisuppressive medications that goes for all solid organs, and 318 00:18:39,680 --> 00:18:42,600 Speaker 3: as of now, these medications if you take them for 319 00:18:42,640 --> 00:18:46,159 Speaker 3: many many years, they might have adverse effects on your 320 00:18:46,240 --> 00:18:50,040 Speaker 3: kidneys and on other organ systems in the body, So 321 00:18:50,080 --> 00:18:53,760 Speaker 3: we try to minimize the time that these healthy individuals 322 00:18:53,880 --> 00:18:56,560 Speaker 3: need to be on a minu suppressive treatment. So that's 323 00:18:56,600 --> 00:18:59,920 Speaker 3: why we usually say about five six years is enough. 324 00:19:00,480 --> 00:19:03,240 Speaker 3: During that time, we give them possibility of having one 325 00:19:03,359 --> 00:19:06,960 Speaker 3: to maybe three children, and then we actually take the 326 00:19:07,080 --> 00:19:07,720 Speaker 3: utress out. 327 00:19:08,600 --> 00:19:12,919 Speaker 2: Huh. That's interesting because if the uterus can be taken 328 00:19:13,040 --> 00:19:16,640 Speaker 2: back after it's fulfilled its purpose, I could see how 329 00:19:16,680 --> 00:19:21,040 Speaker 2: a surgeon might feel more ethically comfortable performing that transplant, 330 00:19:21,200 --> 00:19:23,480 Speaker 2: which is not about saving a life, if they know 331 00:19:23,560 --> 00:19:26,240 Speaker 2: that the side effects are more short term because the 332 00:19:26,359 --> 00:19:30,199 Speaker 2: uterus can be removed again. But then how do physicians 333 00:19:30,280 --> 00:19:33,560 Speaker 2: weigh their idea of when a surgery is worth it 334 00:19:33,720 --> 00:19:36,080 Speaker 2: versus when a patient thinks it's worth it. 335 00:19:36,880 --> 00:19:39,960 Speaker 3: Yeah, so I think you know, as a surgeon, one 336 00:19:40,000 --> 00:19:45,760 Speaker 3: of our main tasks is to not inflict harm, not 337 00:19:46,040 --> 00:19:49,680 Speaker 3: injure the patients we're dealing with, So it's not up 338 00:19:49,960 --> 00:19:52,200 Speaker 3: to me to decide, you know, how much does a 339 00:19:52,400 --> 00:19:56,639 Speaker 3: uterus in a person's life, how much quality of life 340 00:19:56,680 --> 00:19:59,280 Speaker 3: does that enhance? You know, having a uterress. I can 341 00:19:59,359 --> 00:20:01,879 Speaker 3: never say that because that's only up to the person 342 00:20:02,040 --> 00:20:05,480 Speaker 3: who wants sat utris and to evaluate how much it 343 00:20:05,520 --> 00:20:09,640 Speaker 3: means to them. But for me, I can never make 344 00:20:09,720 --> 00:20:13,359 Speaker 3: myself inflict harm on anyone, So I know that immune 345 00:20:13,359 --> 00:20:17,439 Speaker 3: suppression will not be in that person's best interest, and 346 00:20:17,480 --> 00:20:21,600 Speaker 3: I have to lean towards what can I do to 347 00:20:21,640 --> 00:20:25,200 Speaker 3: develop better drugs, what can I do to think outside 348 00:20:25,240 --> 00:20:29,040 Speaker 3: of the box to help these patients. But it's a 349 00:20:29,160 --> 00:20:32,440 Speaker 3: very very tricky feel because I can understand why that 350 00:20:32,480 --> 00:20:37,280 Speaker 3: would be important, but I have responsibility not to inflict 351 00:20:37,720 --> 00:20:39,160 Speaker 3: harm on patients as well. 352 00:20:40,359 --> 00:20:43,119 Speaker 2: And could you speak a bit more about how candidates 353 00:20:43,119 --> 00:20:47,359 Speaker 2: are evaluated or prioritized, so who's first on the list 354 00:20:47,400 --> 00:20:51,439 Speaker 2: for a transplant and how do you assess needs and eligibility. 355 00:20:51,720 --> 00:20:55,040 Speaker 3: So there's a tremendous need for this procedure, so we've 356 00:20:55,040 --> 00:20:57,560 Speaker 3: been quite surprised when we look at the numbers. So 357 00:20:57,600 --> 00:21:01,240 Speaker 3: we actually did a little study with Baylor and with 358 00:21:01,359 --> 00:21:04,199 Speaker 3: Cleveland Clinic and with University of Pennsylvania, which had been 359 00:21:04,240 --> 00:21:06,600 Speaker 3: the three centers in the US that was mostly active 360 00:21:06,640 --> 00:21:10,160 Speaker 3: in utross transplant in the beginning, and during these five 361 00:21:10,280 --> 00:21:12,399 Speaker 3: years or six years that we have been open for 362 00:21:12,520 --> 00:21:15,359 Speaker 3: US transplant we have had more than five thousand women 363 00:21:15,400 --> 00:21:19,200 Speaker 3: applying for having a utress transplant, and we have only 364 00:21:19,240 --> 00:21:22,439 Speaker 3: transplanted thirty nine, so you can imagine how many we 365 00:21:22,560 --> 00:21:25,480 Speaker 3: have had to say no to. From the beginning, it's 366 00:21:25,520 --> 00:21:30,320 Speaker 3: been first come, first basis. They contact us, we have 367 00:21:30,400 --> 00:21:33,360 Speaker 3: a basic kind of health questionnaire first to make sure 368 00:21:33,400 --> 00:21:35,960 Speaker 3: that they are healthy, to make sure that they are 369 00:21:36,280 --> 00:21:39,600 Speaker 3: right age, and then we have them in for evaluation. 370 00:21:40,200 --> 00:21:44,040 Speaker 3: And then after we have cleared these individuals for transplant, 371 00:21:44,359 --> 00:21:47,600 Speaker 3: we start looking for an eligible donor for them, and 372 00:21:47,720 --> 00:21:50,000 Speaker 3: most cases in the US so far has actually been 373 00:21:50,040 --> 00:21:51,080 Speaker 3: living donors. 374 00:21:51,520 --> 00:21:54,320 Speaker 2: And what would happen if a patient had their children 375 00:21:54,480 --> 00:21:57,119 Speaker 2: and then they said to you, I feel like this 376 00:21:57,280 --> 00:21:59,640 Speaker 2: uterus is part of my body now and I don't 377 00:21:59,680 --> 00:22:00,760 Speaker 2: want to have it removed. 378 00:22:01,359 --> 00:22:05,639 Speaker 3: Yeah, So so far, these are highly selected patients that 379 00:22:05,720 --> 00:22:09,639 Speaker 3: have been very compliant with the medical team. And we 380 00:22:09,720 --> 00:22:12,080 Speaker 3: always say to the patients that we consider them to 381 00:22:12,119 --> 00:22:15,760 Speaker 3: be part of the team. So we usually have conversations 382 00:22:15,760 --> 00:22:19,080 Speaker 3: with them. If they have a different, you know, opinion 383 00:22:19,119 --> 00:22:21,840 Speaker 3: than we do, we try to come to a common ground. 384 00:22:22,440 --> 00:22:24,280 Speaker 3: But of course it's going to happen at some point 385 00:22:24,320 --> 00:22:26,520 Speaker 3: that the patient is definitely don't want to give up 386 00:22:26,520 --> 00:22:29,639 Speaker 3: their uters and the reason for that is that univerus 387 00:22:29,680 --> 00:22:31,800 Speaker 3: oppression is not where we want it to be at 388 00:22:31,840 --> 00:22:36,200 Speaker 3: the moment. It can potentially damage your life and your 389 00:22:36,320 --> 00:22:39,520 Speaker 3: organs if you have it for too long. And we can't, 390 00:22:39,560 --> 00:22:41,959 Speaker 3: of course force them to give up their uterus, but 391 00:22:42,000 --> 00:22:45,120 Speaker 3: we can try to explain to them why we think 392 00:22:45,240 --> 00:22:48,439 Speaker 3: like we do. And usually people come to terms with 393 00:22:48,520 --> 00:22:52,600 Speaker 3: that because if they have given births, they also realize 394 00:22:52,600 --> 00:22:54,840 Speaker 3: that they need to be there for that child for 395 00:22:55,280 --> 00:22:58,040 Speaker 3: the child's lifetime, right, so they do want to be 396 00:22:58,119 --> 00:23:01,000 Speaker 3: in good health, and if something is is damaging their 397 00:23:01,000 --> 00:23:04,760 Speaker 3: health liking inn suppression potentially can do, they are quite 398 00:23:04,760 --> 00:23:05,840 Speaker 3: willing to get rid of that. 399 00:23:06,320 --> 00:23:08,679 Speaker 2: And if someone had their uterus removed because of a 400 00:23:08,720 --> 00:23:12,480 Speaker 2: health condition like cancer or fibroids, but they felt that 401 00:23:12,560 --> 00:23:14,600 Speaker 2: they needed to have a uterus in order to kind 402 00:23:14,600 --> 00:23:18,600 Speaker 2: of feel whole, would they be eligible for a uterus transplant. 403 00:23:19,760 --> 00:23:24,200 Speaker 3: For now, it's only for reproductive purposes, So at the moment, 404 00:23:24,600 --> 00:23:28,080 Speaker 3: just to feel whole is it's not just but to 405 00:23:28,160 --> 00:23:30,960 Speaker 3: feel whole, it is not a good reason to get 406 00:23:31,000 --> 00:23:32,600 Speaker 3: a uterus transplant today. 407 00:23:33,480 --> 00:23:37,280 Speaker 2: And my understanding is that today only cis gender women 408 00:23:37,400 --> 00:23:39,880 Speaker 2: have received uterus transplants. Is that correct? 409 00:23:40,240 --> 00:23:41,719 Speaker 3: That is correct as of today? 410 00:23:42,680 --> 00:23:45,760 Speaker 2: And how close would you say that you are to 411 00:23:45,800 --> 00:23:49,480 Speaker 2: being able to perform muterus transplants on transgender patients and 412 00:23:49,560 --> 00:23:51,000 Speaker 2: intersex patients. 413 00:23:51,600 --> 00:23:53,840 Speaker 3: I know for a fact that there are several teams, 414 00:23:54,240 --> 00:23:56,280 Speaker 3: both in the US and in Europe that I was 415 00:23:56,359 --> 00:24:00,679 Speaker 3: looking into that possibility, and I think think that we 416 00:24:00,760 --> 00:24:05,159 Speaker 3: are very close to at least doing intersex patients and 417 00:24:05,280 --> 00:24:10,960 Speaker 3: AIS patients, which is patients with androgen insensitivity syndrome that 418 00:24:11,240 --> 00:24:15,680 Speaker 3: biologically have an xy chromosomes. I think we're very close 419 00:24:15,720 --> 00:24:21,639 Speaker 3: to doing those, and then transgender females will follow closely behind. 420 00:24:22,680 --> 00:24:24,840 Speaker 2: And just to make sure I understand, because this would 421 00:24:24,840 --> 00:24:28,239 Speaker 2: be a big deal. That's also for the purpose of procreation. 422 00:24:27,920 --> 00:24:31,600 Speaker 3: Right, Yes, so in theory it would. We don't know yet. 423 00:24:31,600 --> 00:24:33,480 Speaker 3: And the reason I say theory is that it's not 424 00:24:33,560 --> 00:24:35,920 Speaker 3: been done yet, but I believe it. Yes, it could 425 00:24:35,960 --> 00:24:36,439 Speaker 3: be done. 426 00:24:36,760 --> 00:24:41,800 Speaker 2: That's incredible. So are there any ethical considerations that working 427 00:24:41,800 --> 00:24:43,760 Speaker 2: with a new group like this might bring up? 428 00:24:44,200 --> 00:24:44,320 Speaker 1: Now? 429 00:24:44,359 --> 00:24:47,320 Speaker 3: I think when you look at the transgender population, you 430 00:24:47,359 --> 00:24:50,160 Speaker 3: know there are lots of different issues when it comes 431 00:24:50,200 --> 00:24:54,000 Speaker 3: to transplantation. That we may or may not have overcome yet. 432 00:24:54,119 --> 00:24:56,760 Speaker 3: So the things you usually talk about just you know, 433 00:24:56,840 --> 00:25:00,399 Speaker 3: there's anatomical differences or hormonal factors that might be different, 434 00:25:00,520 --> 00:25:04,520 Speaker 3: there's fertility concerns, but when it comes to medical parts, 435 00:25:04,680 --> 00:25:10,320 Speaker 3: there's no clear, you know, medical reason why transgender females 436 00:25:10,400 --> 00:25:15,159 Speaker 3: couldn't undergo you just transplant. But it's up to the 437 00:25:15,240 --> 00:25:17,800 Speaker 3: traditions and the legal actions we have of the society 438 00:25:17,880 --> 00:25:20,040 Speaker 3: to decide whether we should do it just because some 439 00:25:20,480 --> 00:25:24,040 Speaker 3: people say, you know, just because we can, maybe we shouldn't. 440 00:25:25,960 --> 00:25:28,480 Speaker 3: If you ask me personally, I think that everyone has 441 00:25:28,600 --> 00:25:33,320 Speaker 3: the right to reproductive rights and healthcare that includes also transgenders. 442 00:25:33,359 --> 00:25:35,600 Speaker 3: So that's kind of my personal standpoint. 443 00:25:36,240 --> 00:25:41,880 Speaker 2: And have you spoken to potential patients who are interested 444 00:25:41,920 --> 00:25:45,200 Speaker 2: in looking at this kind of surgery for this feeling 445 00:25:45,240 --> 00:25:47,439 Speaker 2: and feeling whole as opposed to procreation. 446 00:25:48,080 --> 00:25:51,119 Speaker 3: Yes, absolutely, we get those requests, I would say at 447 00:25:51,200 --> 00:25:54,760 Speaker 3: least weekly and so far. Unfortunately, you know, we have 448 00:25:54,880 --> 00:25:56,919 Speaker 3: to advise them that this is not a good option 449 00:25:57,080 --> 00:26:01,159 Speaker 3: for them if that's their purpose, But we do get that. 450 00:26:01,440 --> 00:26:04,159 Speaker 2: Could you just talk a little bit more about the 451 00:26:04,200 --> 00:26:08,359 Speaker 2: future of uterus transplants and which direction you see things going. 452 00:26:09,600 --> 00:26:12,600 Speaker 3: So I think uterus transplant it's very exciting. I've been 453 00:26:12,600 --> 00:26:14,879 Speaker 3: thinking that from the beginning. But I think we're now 454 00:26:15,000 --> 00:26:18,920 Speaker 3: at a road cross where, you know, we know that 455 00:26:18,960 --> 00:26:21,280 Speaker 3: we can do it, We know that we can do 456 00:26:21,320 --> 00:26:24,480 Speaker 3: it safe. We know that there's a huge demand from 457 00:26:24,560 --> 00:26:27,840 Speaker 3: patients that wants to go through a uterress transplant, and 458 00:26:27,880 --> 00:26:32,200 Speaker 3: we know there's an enormous supply out there with donors 459 00:26:32,200 --> 00:26:35,280 Speaker 3: that wants to give their uters away. So the only 460 00:26:35,320 --> 00:26:38,359 Speaker 3: thing that's now holding us back is actually the funding, 461 00:26:38,440 --> 00:26:41,760 Speaker 3: the economics of it, and there we need help from 462 00:26:41,800 --> 00:26:46,880 Speaker 3: decision makers, for policymakers to understand that infertility is this 463 00:26:47,240 --> 00:26:52,880 Speaker 3: massive problem that society would be helped. You know, if 464 00:26:52,920 --> 00:26:58,359 Speaker 3: we support infertility, the whole society benefits from that. 465 00:26:58,359 --> 00:27:02,439 Speaker 2: That's really interesting, And so would you say, and with 466 00:27:02,600 --> 00:27:08,800 Speaker 2: uterus transplants, is not actually a shortage of people willing 467 00:27:08,840 --> 00:27:13,159 Speaker 2: to donate their uterus, it's that it's the economics of 468 00:27:13,640 --> 00:27:15,360 Speaker 2: the cost of the surgery. 469 00:27:16,320 --> 00:27:20,120 Speaker 3: Absolutely, But there's so many people out there that wants 470 00:27:20,160 --> 00:27:22,479 Speaker 3: to donate. And that's one of the things that when 471 00:27:22,520 --> 00:27:25,320 Speaker 3: I moved from Sweden over here, I was so surprised 472 00:27:25,359 --> 00:27:28,680 Speaker 3: because in Sweden we had these directed donors, which means 473 00:27:28,720 --> 00:27:31,600 Speaker 3: that they know their recipient. So the recipient had to 474 00:27:31,640 --> 00:27:34,120 Speaker 3: come with their donors. So it was usually the mother 475 00:27:34,200 --> 00:27:37,080 Speaker 3: of the recipient or a close relative that wanted to donate. 476 00:27:37,440 --> 00:27:39,520 Speaker 3: But here when we opened in Dallas, all of a sudden, 477 00:27:39,560 --> 00:27:42,280 Speaker 3: we had all these donors from all over the country 478 00:27:42,280 --> 00:27:44,400 Speaker 3: calling in one saying, you know, I want to give 479 00:27:44,440 --> 00:27:48,480 Speaker 3: my uterus away. The pregnancy was such an important part 480 00:27:48,520 --> 00:27:50,400 Speaker 3: of my life, and I want to give that experience 481 00:27:50,440 --> 00:27:53,320 Speaker 3: to someone else. So we have had donors from forty 482 00:27:53,359 --> 00:27:57,479 Speaker 3: one different states calling us and wanting to donate. And 483 00:27:57,520 --> 00:28:00,439 Speaker 3: they do that on their own cost. You know, they travel. 484 00:28:00,440 --> 00:28:03,840 Speaker 3: We can't give them any reimbursement for travel or expenses 485 00:28:03,920 --> 00:28:06,240 Speaker 3: like that. So they come, they pay for their own 486 00:28:06,320 --> 00:28:09,679 Speaker 3: you know, stay and plane tickets and everything. And they 487 00:28:10,119 --> 00:28:12,119 Speaker 3: do this, They give up their uterus to someone they 488 00:28:12,840 --> 00:28:15,160 Speaker 3: don't know and they may never meet, just to give 489 00:28:15,160 --> 00:28:16,000 Speaker 3: them the experience. 490 00:28:16,640 --> 00:28:19,679 Speaker 2: Wow, that's incredible and that that's really interesting. And so 491 00:28:19,760 --> 00:28:21,920 Speaker 2: it shows a kind of difference with something like kidneys, 492 00:28:21,960 --> 00:28:24,199 Speaker 2: where there is a long list and it seems like 493 00:28:24,240 --> 00:28:28,000 Speaker 2: the determining factor is the shortage of you know, donors. 494 00:28:28,440 --> 00:28:31,439 Speaker 2: But then yeah, that's really interesting that they're there and ready. 495 00:28:32,040 --> 00:28:36,920 Speaker 2: It's just the money that's really bad. 496 00:28:36,960 --> 00:28:38,160 Speaker 3: I know, it's frustrating. 497 00:28:39,240 --> 00:28:41,200 Speaker 2: What do you think would make that change? 498 00:28:41,800 --> 00:28:47,400 Speaker 3: I think, you know, reproduction in general and together with 499 00:28:47,560 --> 00:28:52,080 Speaker 3: uterus transportation is a field that we don't have any 500 00:28:52,120 --> 00:28:55,240 Speaker 3: good support for and why that is maybe it is 501 00:28:55,840 --> 00:28:58,920 Speaker 3: you know, I would like more women in the decision 502 00:28:58,960 --> 00:29:05,480 Speaker 3: making roles. I would like younger women and younger people 503 00:29:05,600 --> 00:29:08,480 Speaker 3: up there to take part in the decision making because 504 00:29:08,640 --> 00:29:14,240 Speaker 3: I think infertility is a diagnosis that it's considered a disease, 505 00:29:14,720 --> 00:29:19,360 Speaker 3: but it's a very it's almost like a stigma more 506 00:29:19,960 --> 00:29:22,400 Speaker 3: more than something that we can cure. So there's a 507 00:29:22,440 --> 00:29:26,480 Speaker 3: lot of studies out there where you compare different diseases 508 00:29:26,640 --> 00:29:31,360 Speaker 3: that people get, and infertility is right up there with 509 00:29:31,440 --> 00:29:35,560 Speaker 3: cancer diagnosis in terms of severity for the individual and 510 00:29:35,600 --> 00:29:38,320 Speaker 3: the psychological issues that comes with it. So I think 511 00:29:38,360 --> 00:29:42,480 Speaker 3: we should really look at infertility for what it is. 512 00:29:42,600 --> 00:29:46,480 Speaker 3: It's a disease that we can cure and it needs support. 513 00:29:47,680 --> 00:29:50,320 Speaker 2: When I heard Lisa talk about the lack of support 514 00:29:50,360 --> 00:29:53,680 Speaker 2: for infertility, I couldn't help but think of gen Dingle 515 00:29:53,880 --> 00:29:56,440 Speaker 2: and the dark hole she felt she couldn't escape. From 516 00:29:56,480 --> 00:30:00,680 Speaker 2: before her uterus transplant. She hopes that her experience can 517 00:30:00,680 --> 00:30:04,040 Speaker 2: help other people with uterine factor infertility issues. 518 00:30:04,840 --> 00:30:08,000 Speaker 1: Now they can look at my story and they can say, 519 00:30:08,640 --> 00:30:11,040 Speaker 1: I have an option. Now you know, I don't have 520 00:30:11,160 --> 00:30:16,320 Speaker 1: to go in and out of these dark holes because 521 00:30:16,360 --> 00:30:18,040 Speaker 1: now I know that there's options. 522 00:30:19,520 --> 00:30:21,760 Speaker 2: But just how accessible of an option it will be 523 00:30:21,920 --> 00:30:25,920 Speaker 2: once uterus transplants become more widely available remains to be seen. 524 00:30:26,720 --> 00:30:28,200 Speaker 3: It's just so expensive. 525 00:30:28,440 --> 00:30:30,880 Speaker 1: It's so expensive to become a mom if you have 526 00:30:30,960 --> 00:30:32,360 Speaker 1: to go through loops like that. 527 00:30:33,000 --> 00:30:37,880 Speaker 2: Remember, for Jen, having a gestational carrier had been out 528 00:30:37,880 --> 00:30:41,400 Speaker 2: of reach due to its extremely high cost. Her wish 529 00:30:41,480 --> 00:30:45,880 Speaker 2: come true was only financially possible because her uterus transplant 530 00:30:45,960 --> 00:30:49,600 Speaker 2: was part of a research program and her costs were covered. 531 00:30:50,520 --> 00:30:54,360 Speaker 2: As uterus transplants become offering clinics, the cost might be 532 00:30:54,680 --> 00:30:57,000 Speaker 2: just as out of reach for people like Jen as 533 00:30:57,080 --> 00:31:00,240 Speaker 2: using a gestational carrier, and, like a lot lot of 534 00:31:00,280 --> 00:31:04,040 Speaker 2: other types of fertility treatment, many insurance programs might not 535 00:31:04,080 --> 00:31:10,360 Speaker 2: cover getting one. Last year, Jen had another. 536 00:31:10,080 --> 00:31:11,480 Speaker 3: Wish come true. 537 00:31:11,600 --> 00:31:14,400 Speaker 2: Her medical team set up a meeting at the hospital 538 00:31:14,480 --> 00:31:18,240 Speaker 2: between her and her uterus donor. The two women first 539 00:31:18,280 --> 00:31:20,719 Speaker 2: saw each other from across the hospital terrace. 540 00:31:21,800 --> 00:31:23,480 Speaker 1: We kind of just ran up to each other and 541 00:31:23,520 --> 00:31:27,680 Speaker 1: gave each other a hug, and we cried, and we 542 00:31:27,680 --> 00:31:30,320 Speaker 1: were nervous because there was lots of people around just 543 00:31:30,360 --> 00:31:33,240 Speaker 1: watching us. But we were able to kind of just 544 00:31:33,280 --> 00:31:35,680 Speaker 1: have our own moment and just love on each other 545 00:31:35,720 --> 00:31:37,719 Speaker 1: a little bit and just tell each other how thankful 546 00:31:37,760 --> 00:31:38,680 Speaker 1: we were for each other. 547 00:31:39,640 --> 00:31:42,160 Speaker 2: It turns out this whole time, they'd lived in the 548 00:31:42,200 --> 00:31:48,920 Speaker 2: same city, just ten minutes apart from each other. These days, 549 00:31:49,000 --> 00:31:52,360 Speaker 2: Jen is in good health. She doesn't have any medical 550 00:31:52,400 --> 00:31:56,640 Speaker 2: procedures planned at this time, but if there was a 551 00:31:56,680 --> 00:31:59,560 Speaker 2: way to do it without putting too much strain on 552 00:31:59,600 --> 00:32:03,800 Speaker 2: her body, she says she'd gladly get another uterus transplant. 553 00:32:04,520 --> 00:32:06,080 Speaker 2: She'd love to have more kids. 554 00:32:06,840 --> 00:32:09,160 Speaker 1: If I could have another transplant, I would, And I'd 555 00:32:09,200 --> 00:32:11,520 Speaker 1: joke with my team about that all the time. If 556 00:32:11,560 --> 00:32:14,560 Speaker 1: you guys want to do something new that's never been done, 557 00:32:14,880 --> 00:32:28,160 Speaker 1: a transplant after a transplant, here I am. 558 00:32:23,600 --> 00:32:27,880 Speaker 2: Next time on playing God. Lorie strong In's son Henry, 559 00:32:28,120 --> 00:32:31,280 Speaker 2: was diagnosed at birth with a rare and often fatal 560 00:32:31,440 --> 00:32:35,600 Speaker 2: genetic disease. She was told that Henry's best chance of 561 00:32:35,640 --> 00:32:40,160 Speaker 2: surviving past Kindergarten was a transplant of umbilical core blood 562 00:32:40,200 --> 00:32:43,080 Speaker 2: from a sibling with a specific genetic profile. 563 00:32:43,920 --> 00:32:47,240 Speaker 5: We got a call from a doctor who said, what 564 00:32:47,320 --> 00:32:50,040 Speaker 5: would you do if I told you you could knowingly 565 00:32:50,080 --> 00:32:53,960 Speaker 5: get pregnant with a baby who's healthy and a perfect 566 00:32:54,000 --> 00:33:02,520 Speaker 5: genetic match to Henry? And I said, yes. 567 00:33:03,520 --> 00:33:06,680 Speaker 2: But is it ethical to create a life in order 568 00:33:06,720 --> 00:33:14,320 Speaker 2: to save another? That's next time I'm playing God. Thank 569 00:33:14,360 --> 00:33:16,600 Speaker 2: you to all the guests who appeared in this episode, 570 00:33:17,000 --> 00:33:22,120 Speaker 2: Jen Dingle, Lisa Johannson and Ruth Ferrell. Playing God is 571 00:33:22,160 --> 00:33:25,760 Speaker 2: a co production of Pushkin Industries and the Johns Hopkins 572 00:33:25,760 --> 00:33:30,880 Speaker 2: Berman Institute of Bioethics. Emily Bourne is our lead producer. 573 00:33:31,360 --> 00:33:35,320 Speaker 2: This episode was also produced by Sophie Crane and Lucy Sullivan. 574 00:33:35,800 --> 00:33:40,320 Speaker 2: Our editors are Karen Chakerjee and Kate Parkinson Morgan. The 575 00:33:40,600 --> 00:33:45,480 Speaker 2: music and mixing by Echo Mountain Engineering support from Sarah 576 00:33:45,480 --> 00:33:51,360 Speaker 2: Bruguerre and Amanda Kaiwang. Show art by Sean Carney, fact 577 00:33:51,480 --> 00:33:56,400 Speaker 2: checking by David jar and Arthur Gompertz. Our executive producer 578 00:33:56,600 --> 00:33:59,880 Speaker 2: is Justine Lang at the Johns Hopkins Berman in st 579 00:34:00,120 --> 00:34:03,560 Speaker 2: You to Bioethics. Our executive producers are Jeffrey Kahan and 580 00:34:03,600 --> 00:34:08,279 Speaker 2: Anna Mastriani, working with a mediahood. Funding provided by the 581 00:34:08,280 --> 00:34:13,640 Speaker 2: green Wall Foundation. Special thanks to Anne Egold. I'm Laurena 582 00:34:13,760 --> 00:34:17,040 Speaker 2: Rora Hutchinson. Come back next week for more Playing God. 583 00:34:25,960 --> 00:34:29,880 Speaker 2: Generous support for Playing God is provided by the Greenwall Foundation. 584 00:34:30,280 --> 00:34:34,879 Speaker 2: Making bioethics integral to healthcare policy and research. Learn more 585 00:34:35,000 --> 00:34:36,279 Speaker 2: at greenwall dot org