This Podcast Will Kill You - Ep 145 IVF, Part 3: Industry

Episode Date: July 9, 2024

CW: mentions of infertility, pregnancy loss, body-shamingThe third and final installment of our series on IVF surveys the current and potential future landscape of this powerful technology. We first t...race the growth of the IVF industry in the US since its inception in the early 1980s up to today before then giving an overview of some of the regulatory and ethical considerations facing this field on a global scale. Alongside these challenges of access and regulation are the incredible innovations that expand how we use IVF today as well as paint a world of possibilities for the future of IVF as we incorporate these revolutionary technologies. Tune in for a conversation about the past, present, and possible future of IVF! See omnystudio.com/listener for privacy information.

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Starting point is 00:00:38 Terms and conditions apply. Visit blueapron.com slash terms for more information. I'm Amanda Knox, and in the new podcast, Doubt, the case of Lucy Letby, we unpack the story of an unimaginable tragedy that gripped the UK in 2023. But what if we didn't get the whole story? Evidence has been made to fit. The moment you look at the whole picture, the case collapsed. What if the truth was disguised by a story we chose to book?
Starting point is 00:01:02 Oh, my God, I think she might be innocent. Listen to Doubt, the case of Lucy Lettby, on the IHeartRadio app, Apple Podcasts, or wherever you get your podcasts. I'm Clayton Eckerd. In 2022, I was the lead of ABC's The Bachelor. But here's the thing. Bachelor fans hated him. If I could press a button and rewind it all I would. That's when his life took a disturbing turn.
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Starting point is 00:01:47 Hi, I'm Diana. And I'm Paul. And we've been married for about 13 years. Our journey began 12 years ago after trying to conceive for a year without assistance. We were referred to a fertility clinic where we endured rigorous testing and were devastated with the diagnosis of PCOS and cryptozyspermia. But that didn't stop us. We had high hopes that IVF treatments would help us grow our family.
Starting point is 00:02:09 I endured my first varicacell removal surgery about 10 years ago, which is unfortunately not successful. Our fertility doctor informed us that with such low semen parameters, IUI, and even conventional IVF, wouldn't work for us. Instead, we were advised to pursue a then novel way of fertilizing eggs, intracitoplasmic sperm injection, also known as Ixie fertilization. However, due to antiquated BMI restrictions at our local clinic, Diana was not allowed to move forward with an egg retrieval.
Starting point is 00:02:33 They explained that the anesthesia team did not perform these services on larger bodies, that we believe this is one of the many ways that clinic artificially inflated their success rates. If we wanted to move forward with an IVF at our local clinic, Diana had to lose weight first. Spoiler alert, it took me nearly 10 years to finally lose enough weight to qualify for treatment in our hometown, which resulted in wasting a decade of my fertility. Once you were finally able to access the care that would hopefully help us grow our family, we were warned that I likely had bad egg quality due to my age, which was 39 at the time.
Starting point is 00:03:03 After enduring 10 rounds of IVF and countless tests over the past three years, we now better understand that our greatest obstacle all along was not my weight, my age, or my egg quality. Our biggest obstacle has always been my sperm, which had gone ignored by almost every fertility doctor we worked with. More specifically, our biggest impediment was the very high level of DNA fragmentation present in my sperm, something that we discovered after our own research and had to strongly advocate for and convince our REI to even test for.
Starting point is 00:03:28 This is why, after multiple failed rounds of IVF, I decided to move forward with another varicosell removal surgery to help overcome our DNA fragmentation issues. This time, with a reproductive urologist, who successfully improved all our semen parameters and as a result improved our final IVF outcomes. Over the past three years, we have researched and tried everything related to improving our fertility,
Starting point is 00:03:48 including losing 100 pounds, trying experimental treatments, such as different protocols, fresh embryo transfers, reproductive immunology, acupuncture, red light therapy, ovarian PRP, uterine PRP, and so much more. We have worked with multiple clinics traveling out of state for the best care for our unique needs. In fact, we record this audio from a tiny studio apartment in Manhattan as we work with a clinic in New York City. We've retrieved 100 eggs from Diana's ovaries through 10 extremely brutal egg retrievals. We have 47 embryos, which resulted in 10 blastocysts that were genetically tested.
Starting point is 00:04:20 Six of those are frozen in time, just like Han Solo, ready and waiting to be transferred into Diana's uterus. Throughout this expedition, we have learned so much about the fertility industry, the insurance industry, and each other. The biggest and toughest lesson that we have learned while immersing ourselves in the world of fertility treatments is that efforts do not equal outcomes. Still, we publicly share everything that we have learned so that others may learn from our mistakes. More importantly, we share our stories so that others suffering through infertility will know that they are not alone. When I turned 38, I decided to have a child on my own. I'm a single lady. I had just gotten out of a pretty serious relationship
Starting point is 00:04:59 and didn't really want there to be the pressure of a baby hanging over another. So I went in for a consultation to find out what was going on with my body. Turns out I had a pretty good follicle count. I went pretty quickly and found a donor. In the meantime, I did my own genetic carrier screening, and I found out I had was a carrier for two rare diseases. And he, the donor I selected had only been screened for one of them. One of them was not included on most screens.
Starting point is 00:05:30 So he actually ended up going back to the sperm bank with those results, which was great. So this was an anonymous donor, although we did do Open ID. So my daughter, spoiler alert, can reach out when she turns 18. So that decision is up to her to reach out if she wants. So I had one round of IUI, which was unmedicated, and then that didn't work. I was pretty disappointed and just didn't want to wait any longer, just given the amount of time that went between each cycle. Of course, it's every month, kind of aligning with your menstrual cycle. I went to IVF right after that. And at the beginning of that second attempt, I got COVID,
Starting point is 00:06:09 and my follicle count was really terrible when we went to check at the middle of the month. and so we waited for another month, which was like, that's eight weeks then from the start. I did about two weeks of shots, and I had one not-so-fun episode where I had to go on a Sunday to sitting nearby. I didn't have a car at the time and had to take a bus and a train and had very sore ovaries and was super swollen and feeling awful, but I had to get one more gonoliffe pen for, I think it was the quarter of the remaining dose that I needed for that night. I did my trigger the next week, two days later, which was also nerve-wracking. So after that, I got about 20 mature eggs. We used Ixie, and I eventually ended up with a fair number of embryos
Starting point is 00:06:55 that were PGT normal. I had two that were abnormal, that were discarded, and a couple that just didn't make it. So I let the embryologists decide which embryo to implant, because I didn't want to get the sex of the embryos revealed. I did not want to make that choice. And I want to do. And I want to to keep as much of it kind of normal as possible, this totally bizarre journey to have my daughter. I guess it's not bizarre, but it was just different than what I expected. So we did a frozen embryo transfer in November,
Starting point is 00:07:28 and I found out I was pregnant right after Thanksgiving, and I had her last August. So I have my beautiful baby, and I have several embryos on ice. Thank you again. Everyone so, so much for sharing your stories with us. It really means so much. And Aaron and I have been like talking about this sort of off the air and just about how appreciative we are and how amazing it is to get to learn this wide range of experiences and feelings that people have about this and how grateful we are that we get to share these with other people as well.
Starting point is 00:08:52 Yeah. I think we maybe all have an idea of what we think IVF might be like. And so many of us have absolutely no idea, and it's so different for so many of you. So thank you all so much for taking the time to write in, to record your stories, and to be willing to share such a difficult and vulnerable time with so many people. We really appreciate it. Yes. Well said. Hi, I'm Aaron Welsh. And I'm Aaron Alman Updike. And this is, this podcast will kill you. We're coming to you with our third of three episodes on IVF. Yes. If you have not listened to the first two episodes, you should go listen to them. You should go check those out.
Starting point is 00:09:40 But just for a little bit of context, in case you're like, I'll do that later after this. Yeah, afterwards. Yeah, afterwards. This is what you could expect to find in episodes one and two. Episode one, we were primarily focused on infertility, sort of the concept, of infertility and how it has changed over space and time and how we evaluate infertility today in a biomedical setting. Yeah. And then our second episode was focused really on IVF. How did we do it? Like, how did people come up with IVF? What kind of science was required for us to be able to make
Starting point is 00:10:18 that happen? And what are the steps of IVF today? And then we get to today's. And then... And then... episode. Today's episode is sort of a very, I would say like a very surface level overview of the current landscape of IVF. I thought you were going to say a surface level deep dive just to like be contrary. I do feel like that is like our shtick. It really is. Yeah. Yeah, this is mostly about like from innovation to industry, essentially, how IVF has become the thing that it is today and then also where it might go in the future. Yeah. Yeah. But before we get into all of that, it's still quarantine time. It is. And it's still the same quarantini as our first two episodes. It's a work of art. It is. And if you would like to get the full recipe for the quarantini and non-acoholic placebo
Starting point is 00:11:30 Rita, a work of art, you should check out our social media channels. We've got posted there. Check out our website. We've got them posted there. Also on our website, lots of cool, great stuff, you know, transcripts. We've got links to merch, links to bookshop, where you can find all of the book club books, as well as the books that we reference for all of our episodes. You can find goodreads lists. You can find Patreon, lots of things. I know I'm forgetting stuff, but you know what? You did a great job. Check it out. This podcast will kill you.com. Let's get started. Let's please, Aaron. Tell me about this global landscape because, oof, I have some ideas about it, but I don't really know. Yeah. That's sort of how I ended up. So,
Starting point is 00:12:19 We'll see what the journey that I took to get there right after this break. Dinner shows up every night, whether you're prepared for it or not. And with Blue Apron, you won't need to panic order takeout again. Blue Apron meals are designed by chefs and arrive with pre-portioned ingredients, so there's no meal planning and no extra grocery trip. There, assemble and bake meals take about five minutes of hands-on prep. Just spread the pre-chopped ingredients on a sheet pan, put it in the oven, and that's it. And if there's truly no time to cook, dish by Blue Apron meals are fully prepared.
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Starting point is 00:14:49 Lucy Lettby has been found guilty. But what if we didn't get the whole story? The moment you look at the whole picture, the case collapses. I'm Amanda Knox, and in the new podcast, Doubt the case of Lucy Lettby, we follow the evidence and hear from the people that lived in, to ask what really happened when the world decided who Lucy Lettby was. No voicing of any skepticism or doubt. It'll cause so much harm at every single level of the British establishment of this is wrong.
Starting point is 00:15:20 Listen to Doubt, the case of Lucy Letby, on the Iheart Radio app, Apple Podcasts, or wherever you get your podcasts. Hi, my name is Melissa. I'm 41 years old, and my fertility journey started 10 years ago. My husband and I tried to conceive for two years without success before being referred to a fertility clinic. We spent the next year undergoing various tests to determine possible causes for our inability to get pregnant. We found out that we both have fertility issues. Our physician recommended that we try intrauterine insemination to improve our chances. We tried several rounds of IUI and were finally successful with the birth of our daughter in 2018. In 2022, we decided to try again, so we went back to our fertility clinic. We tried two unsuccessful rounds of IUI and then moved on to IVF as by this time I was
Starting point is 00:16:26 nearing 40. We underwent our first egg retrieval process last summer. To say that I was unprepared for the difficulties of undergoing IVF was a huge understatement. To prepare for the retrieval, I had to inject myself with fertility meds multiple times a day. I had to do several internal ultrasounds so the clinic could monitor the growth of my eggs. On the day of the retrieval, I was so hopeful, but again, totally unprepared for the experience of the procedure. I was given pain medication, but the process of piercing through my vaginal wall to aspirate the eggs from my ovaries was excruciating. The retrieval resulted in four embryos, which were frozen and sent for PGTA testing, but only a single embryo came back as viable for transfer.
Starting point is 00:17:09 So I began the process for embryo transfer, which involved daily intramuscular injections of progesterone in oil. I had a reaction to the oil and ended up with painful red-hot lumps on both of my thighs. We transferred the embryo, but unfortunately, it's a reaction to the oil. didn't survive. I was devastated. Our doctor had us try again, this time with a huge increase in medication dosage. I went through the awful process of injections, ultrasounds, and egg retrieval yet again, and this time we got six embryos. We were so hopeful that it would work this time. Unfortunately, none of the embryos were viable, so we couldn't transfer any of them. We were told
Starting point is 00:17:50 that my aches are too damaged and we shouldn't try to do any further retrievals. Our best hope now is to buy eggs from a donor egg bank with the hope that we might get a healthy embryo that has at least my husband's DNA. This journey of IVF has been an emotional rollercoaster. I've been heartbroken again and again, and now we are left unsure if we will ever have another child. Hi, I'm Sarah, and our journey to having children was a complicated one. My husband and I began trying to fall pregnant shortly after marriage. After nearly 18 months with no conception, we went to the GP for preconception testing and discovered that my husband had asuspermia. Viewed in conjunction with deranged hormone levels,
Starting point is 00:18:33 the GP recommended follow-up genetic screening, so two months later, we received the results that he had 47XXY Climbfelter syndrome, a condition that often results in infertility. We were then referred to a fertility clinic where we decided to try a testicular sperm aspiration to see if they could find any viable immature sperm. None were found. We now knew a sperm donor would be required
Starting point is 00:18:54 as the only treatment option for non-obstructive asuspermic male factor in fertility. In Australia, organic donation has to be altruistic, so finding local sperm is very difficult. Our specialist suggested we look at known donors, specifically a family donor. We decided to approach my husband's brother as a potential donor and we're very grateful that he agreed. A known donor pathway is significantly different to a purchase sperm pathway and required further genetic screening of myself, the donation and freezing of the donor sample, mandatory counselling to ensure all parties were aware of the legalities and potential emotional
Starting point is 00:19:25 mind fields of the situation, and a six-month cooling-off period post-donation which served for testing of the donated sample and allowed for change of mind of the donor. After those six long months, we were ready to finally begin treatment. As is the case with all-malefactor infertility, after that sperm aspiration procedure or further surgeries, medication and treatment was for the carrying parent. Our first collection cycle and fresh embryo transfer was unsuccessful with no additional embryos to freeze. Our second collection cycle and fresh embryo transfer was also unsuccessful, however, had it also produced two embryos to freeze. Here we took a break for a few months
Starting point is 00:19:59 before returning for a frozen embryo transfer, which was thankfully successful and resulted in our gorgeous baby girl. Twelve months after her birth, we returned to the fertility clinic to transfer the remaining frozen embryo. Whilst it felt strange trying to get pregnant again when it felt like we still had a little baby, the knowledge of how hard the fertility treatment was meant I wanted to rip off the band-aid, complete the last treatment cycle, and know with certainty what our family would look like. We repeated the same successful frozen transfer protocol, which was again successful, and this time we had a beautiful baby boy. We're 20 months between the kids, we were deep in the two under two club and extremely grateful for the treatment options that we had been able to utilize
Starting point is 00:20:36 to have our family. Seven months after having our son, we heard from the clinic asking us about the remainder of our frozen donated sperm. This was when we decided our family was complete and we would discard the remaining samples and close the door on our fertility journey. Fertility treatment is emotionally, physically and financially taxing, and we're very thankful to have come out the other side with our two gorgeous little kids. We are acutely aware that not everyone walks away from fertility treatment having had a child. Last week, I left off sometime in the 1980s, after the number of IVF clinics began to grow rapidly,
Starting point is 00:21:35 leading to technological improvements, wider applications, and questions about regulation. about access and about the ethics surrounding this technology. Any new technological advancement is going to carry with it ethical considerations, especially those that are widely used and that have a great deal of impact or potential. And what often happens is that these technologies and their applications develop faster than our regulation of them or even our ability to know how we feel about them. Like what do we think about them? IVF is no exception. IVF is an incredibly powerful technology
Starting point is 00:22:19 that has enabled millions of people around the world to fulfill their dreams of having children. I mean, think about that. Like that is, it is truly amazing. It is incredible. Like, it is so cool and incredible. Yes, it absolutely. This is not hyperbole. Revolution. reproductive technology around the globe, like before IVF after IVF, very clear line. And so, of course, a technology as powerful as IVF will carry with it substantial ethical implications and questions of regulation. Just as we're still working out the kinks of IVF technology, we're still figuring out how to best regulate this industry and how to protect everyone involved and where the future might take us. And today, I want to go through some of the ethical considerations
Starting point is 00:23:16 or questions of regulation of IVF that have emerged over the history of this technology. I'm not going to present pros and cons. I'm not going to make value judgments. I just want to touch on a few areas, not all of the areas, not comprehensively, because I think that, you know, this story in general, the regulatory landscape of IVF is an important, it's a necessary part of the story or history of IVF and its future. This is a really complex topic with so much nuance, and we're not ethicists or policy experts or anything in IVF. We're just going to try our best like we always do. And I'm going to focus primarily on the regulation action. access and innovation side of things. If you live in the U.S., I'm sure you've come across recent
Starting point is 00:24:12 headlines about the Alabama Supreme Court ruling in February of this year that frozen embryos can be considered children in that state. The short-term and long-term implications of this ruling are not yet clear, and I'm sure that in the next few months leading up to the election, we'll see more discussion about this and about the other ways that political groups and religious organizations are trying and sometimes succeeding to push an agenda ultimately aimed at controlling people's bodies and choices. Banning IVF is just one part of this wider movement to reaffirm gender roles, restrict access to health care, reinforce cycles of poverty, and control people's bodies. and it feels truly dystopian to be watching this unfold and gain traction.
Starting point is 00:25:07 I both can't believe, but also sadly can believe that it's happening right in front of us. But today, we're not going to debate when life begins or what should or shouldn't be considered a child and be granted personhood, or even what an embryo is, because there are actually many definitions of embryo that vary globally. And we're not going to debate these things because, first, you can't really debate what comes down to essentially fundamental disagreements over closely held beliefs. Like, I believe, to my core, that abortion is health care and that IVF should not be banned. I cannot imagine entertaining any argument trying to convince me otherwise. And secondly, in the rest of the world, discussions of the ethics of IVF, have moved beyond the question of whether or not IVF should be done and onto how it should be done.
Starting point is 00:26:06 And so that's what I'm going to touch on today. But first, let's go back to the early years of IVF to see how it grew with a special emphasis on the U.S. because that will get us to the current landscape of IVF. The early 1980s established that IVF seemed here to stay, and by the end of the decade, nearly 200 clinics offered IVF in the U.S. And an estimated 30,000 women in the U.S. had sought pregnancy using IVF by the end of the 1980s. Thank you.
Starting point is 00:26:40 Yeah. I was like, wait, wait, wait, wait, here again. But attempts to develop clear federal regulation for IVF fell short. Other countries had come up with licensing bodies to regulate research and treatment, with committees consisting of people with varying backgrounds and expertise. And the U.S. tried this, but didn't get as far as formalizing the committee's recommendations even when there was consensus. And in the meantime, the IVF industry in the U.S. continued to grow.
Starting point is 00:27:14 There were those guidelines from the Society for Assisted Reproductive Technology that I mentioned last week, but no requirement to follow them. As of the late 1980s, any licensed physician could open an IVF clinic. You didn't have to be a board-certified reproductive endocrinologist or even an OBGYN. And this showed in the range of live birth rates in clinics. More established clinics with highly experienced reproductive endocrinologist reported rates of 20%, more than double the national average of 9%, and 21% of all clinics in the U.S. in 1980.
Starting point is 00:27:52 did not have a single live birth. Wow. Yeah. And that isn't to say that 21% of all clinics were terrible and just like exploiting people and taking their money, but that perhaps the entire field might benefit from best practice guidelines that would protect the interests and health of everyone involved from practitioners to patients. The calls for more regulation, both then and now, didn't just come from the
Starting point is 00:28:22 outside, like people working on the outside of IVF, but also those who were most intimately involved in this work. In the 1980s, IVF practitioners knew that this booming field could be severely harmed by just a handful of physicians who saw IVF as an opportunity to exploit rather than help. Without guidelines, the field could grow increasingly market-driven, with private clinics competing for clients by doctoring their numbers or not being fully transparent about their rates of live birth. Ultimately, it was fear of exploitation, along with a scandal that helped to inspire the first major piece of regulation for IVF in the U.S. Even though Cecil Jacobson, the physician at the heart of the scandal, did not offer IVF, he did defraud many people at his reproductive
Starting point is 00:29:16 health practice and also used his own sperm to impregnate patients, saying it was anonymous donation. He was one of those, yeah. Is he, is this the one that that podcast is about? The retrievals? Yeah. No, that retrievals is something else. I'm sorry. Wow. Okay. Yeah. Yeah. There are, there's more than one. More than one. Okay. Great. Yeah. Very, very great. It's wonderful. Yeah. And Cecil Jacobson was sentenced to five years in prison. Five years. Okay. Uh-huh. Yep. Yeah, there are some, he also did some other really horrible things to some of his patients. I won't even get into it, but, you know, just give him a Google. Uh-huh. But finally, in 1992, the Fertility Clinic's Success Rate and Certification Act was passed, largely in the name of consumer protection to require that clinics be transparent about their procedure success rates.
Starting point is 00:30:13 So this is straight from the CDC website. This act, quote, mandates that clinics performing ART annually provide data for all procedures performed to the centers for disease control and prevention and sets forth definitions and reporting requirements. CDC is required to use these data to report and publish clinic-specific success rates and certification of embryo laboratories, end quote. So what I'm not sure about is how. those rates or which of those rates are communicated to IVF clients? Is it a clinic-wide average? Does it
Starting point is 00:30:51 include people experiencing infertility or people who seek IVF for other reasons? Is it across all ages? How much of it is influenced by the decision tree to use IVF? Like depending on the person seeking treatment, some clinics may jump straight to IVF while others may explore less expensive, less involved options first. I don't have answers to that, but the CDC does have a really awesome interactive way that you can look up all of the clinics in your area, like by zip code, and so you can at least see some of the rates, and they have a lot of disclaimers on there about what it counts for and what it doesn't account for and all of that kind of stuff.
Starting point is 00:31:30 Yeah. It's definitely like, yeah, I think that is a really important tool to have. Yeah. To get started at least. Yeah, and I think it sometimes can put that, the onus of research on the person who is doing this, and that's challenging. And also, I don't know. As someone who has never sought IVF, I don't know how easy or difficult or like how different clinics interact with you. Right.
Starting point is 00:31:57 Well, and I'm sure it's all going to also vary, like, which one, if any, take your insurance. How much does your insurance cover? How much does this one cost versus that one cost? It's all just a huge web, you know? Mm-hmm. Mm-hmm. And you just are stuck in it. And you're just stuck in it.
Starting point is 00:32:13 And then there's egg freezing, which is a totally separate procedure that I think more recently, at least we have gotten better numbers on. But in the beginning, it was sort of like, here's this hypothetical scenario that we're going to do. And a lot of these egg freezing programs were started by people who didn't have necessarily backgrounds in medicine or reproductive medicine. And I know that, like, you know, I'm sure that as you'll talk about, we have a better grasp on what egg freezing looks like, but it can also be measured in many, many, many different ways. So it's complicated. And the other thing about this act is that
Starting point is 00:32:55 there aren't clear consequences for the clinics that don't participate in reporting to the CDC. 90% do in the U.S. And the bottom line is that this is still a market-driven enterprise, estimated at $5.34 billion in the U.S. in 2024. Just in the U.S.? Just in the U.S. Yeah. Oh, boy.
Starting point is 00:33:21 Yeah, and so I think what it comes down to for a lot of people is that opportunities exist for clinics to massage their results to stand out from the competition. because of the way that a lot of this is market-driven. But it is untrue that IVF in the U.S. is completely unregulated Wild West. In some ways, there are stricter reporting requirements for IVF than there are for other medical procedures in the U.S. who don't have to report success rates. Granted, it is less regulated than in other countries,
Starting point is 00:33:56 especially those that have national health care systems. but legislation does exist. And it's not just the 1992 Act that helps to protect consumers. Some U.S. states have accreditation and inspection laws. And then there's also the U.S. legal system, which allows patients to sue clinics and doctors for medical malpractice. But litigation is reactive. And so it still allows for the potential for exploitation or abuse within fertility clinics.
Starting point is 00:34:27 Instances of doctors using their... own sperm to impregnate clients without their knowledge or consent, not providing adequate care during procedures or ignoring pain. So that podcast, the retrievals by serial, tells the story of how women underwent these painful surgical procedures at an IVF clinic where a nurse had swapped out fentanyl for saline solution. But no one believed that the women were actually experiencing pain. They were like, no, this is normal amount of pain.
Starting point is 00:34:58 But really they were undergoing procedures that normally they would be. Yeah. Yeah. I haven't listened to it, but it sounds rage-inducing and well done. Yeah. Or some clinics will not properly inform of risks involved or things like extreme, and it also leaves open things like extreme deviation from the standard of medical care, such as when a doctor transferred 12 embryos into a woman named Natalie Suleiman,
Starting point is 00:35:33 resulting in the world's first surviving octoplets, octomom, as we all probably remember. That doctor's license was later revoked. But again, like, how do we better protect against misuse or abuse from the outset? I don't know. The added regulation and threat of litigation did not dampen enthusiasm for IV. in the U.S. during the rest of the 1990s and into the 2000s. From the book Pursuit of Parenthood, quote, between 1999 and 2015, the volume of treatment in America's fertility centers,
Starting point is 00:36:11 measured by the number of egg retrieval cycles, went up more than two and a half times to nearly 232,000 retrieval cycles, about 80% of them with the intent to achieve a pregnancy, and the rest for the purpose of freezing and banking the resulting end. embryos for future use. Just under 61,000 women gave birth after being treated that year, in 2015, for an overall take-home baby rate of about 33%, up from about 25% in 1999. End quote. And patient makeup at these clinics was also changing, with more single women and same-sex couples using IVF, as well as an increase in traditional and gestational surrogacy, egg donation,
Starting point is 00:36:57 and so on. These trends were not happening just in the U.S., but also globally, and they have led to continued discussion and heated debate over how to best regulate some IVF practices. And so here's where I want to move more generally into the global landscape of IVF to touch in some of the questions that have been raised about practices within IVF beyond consumer protection and clinic transparency. Laws about things like surrogacy, egg and sperm donation, IVF for single parents or same-sex couples, age cutoffs, these laws vary globally, which has led to people traveling to other countries to seek fertility treatment, called cross-border reproductive care or fertility
Starting point is 00:37:45 tourism. The U.S., for instance, is one of a handful of countries where paid or commercial surrogacy is legal. India used to be a very popular destination for surrogacy due to its lower cost, but they have since banned foreign couples seeking surrogacy. Other countries permit only altruistic surrogacy, where the cost of medical care and other pregnancy-related expenses are covered, but no additional fees. And in some countries, surrogacy of any kind is illegal. This variation in surrogacy laws reflects discussions around whether paid surrogacy always carries with it the risk of exploitation, whether the transactional nature of paid surrogacy better protects both commissioning parents and
Starting point is 00:38:32 surrogate by more clearly outlying expectations, how to deal with the fact that pregnancy is inherently risk-laden and can be especially so with IVF if multiple embryos implant, or what to do when the unexpected happens. Commissioning couples divorcing during the surrogacy pregnancy. Pregnancy loss. Health issues developing during pregnancy or as a result of pregnancy. People changing their mind midway. There was one case where a genetic scan revealed that one of the fetuses that a surrogate was carrying
Starting point is 00:39:08 had trisomy 21 Down syndrome, and the commissioning couple only adopted the twin without the condition. Then that led to a lot of other issues. It was like a long, really long drawn-out process. Wow. But this in general is a very complicated topic, as is the commodification of sperm, eggs, and embryos. Similar to gestational surrogacy or traditional surrogacy, countries have varying laws regarding sperm and egg donation or sale. and this is another reason that people travel across borders for reproductive care. Then there's anonymous donation, as in is there still such a thing as anonymity with the advent of ancestry testing? Yeah. Yeah.
Starting point is 00:40:00 Discussion has also arisen over the use of frozen eggs, sperm, or fertilized eggs after a couple splits or if someone dies. In situations where there is no written documentation indicating the wishes of the deceased, how should posthumous reproduction be allowed to proceed or should it? I came across one high-profile case where a couple died in a car accident and their two sets of parents engaged the services of a gestational carrier to carry their grandchild from frozen embryos from the deceased couple. So four years after the couple had died, their baby was born. Wow.
Starting point is 00:40:43 Yeah. There are a lot of stories similar to that. Okay. You know, frozen sperm, frozen eggs, commissioning a gestational carrier. Yeah. Yeah. And then finally, recent technological advancements like gene editing, where people can select for sex or other advertised, quote-unquote, like,
Starting point is 00:41:07 designer babies, these have also raised questions along the lines of, just because we can, does that mean we should? It's still very early days when it comes to the practical application of gene editing technologies such as CRISPR to human embryos, but it is in our future, quite possibly our very near future. And many people have called for discussion and regulations now to start drawing lines between what is considered acceptable use of this technology. and what could be considered misuse. Beyond how IVF is done or how the practice is regulated is the question of access. I've already talked about how most stories featuring IVF tend to have a quote-unquote happy ending,
Starting point is 00:41:53 resulting in a baby. And stories where IVF didn't work out aren't highlighted as much. But even more silenced are the stories where people can't seek out IVF due to economic, insurance or geographic reasons or reasons pertaining to their identity, whether that's marital status, sexual orientation, age, etc., sometimes referred to as socially infertile. The WHO and the CDC, among other organizations around the world, classify infertility as a disability. But in the U.S., insurance companies are not required in all states to cover or offer coverage for IVF. Some clinics offer IVF lotteries where people can enter to win a free cycle.
Starting point is 00:42:40 And of course, lack of access to IVF disproportionately impacts people of color and poor people. To quote American sociologist, law professor and social justice advocate Dorothy Roberts, quote, the people in the United States most likely to be infertile are poor, black, and poorly educated. Most couples who use IVF and other high-tech procedures are white, high-tech procedures are white, highly educated, and affluent, end quote. This problem of access extends globally, with resource poor countries tending to have lowest access to assisted reproductive technologies like IVF. Laws and regulations that limit or remove reproductive rights,
Starting point is 00:43:22 whether that's access to contraceptives, abortion, fertility treatments, without exception, have a disproportionate impact on the poor and disadvantaged. We may not know what's going to happen in the future, but that much we do know. Right. That has been clear for a very long time. That is established. We haven't fixed that problem yet. It's still in existence, in perpetuity. Yes.
Starting point is 00:43:51 But IVF, the history, the regulation, the technology, it's such a hugely, vastly complex topic and may become even more so in the coming decades. with the incorporation of new technologies. Figuring out how to regulate a constantly evolving technology is challenging but essential. IVF holds so much potential. It has given so many people the children they have always wanted, and it has helped to expand our definition of what constitutes a family in a really beautiful way. And it also forces us to examine our feelings about what the limits of this technology are
Starting point is 00:44:31 or what they should be in the future. And it's okay to not know how you feel about all these different aspects of IVF, like posthumous reproduction or gene editing. It's complex stuff. And if it were easy to come to a consensus or like know that this is, you know, this is the dividing line, then we would have already done that at this point, like at least country to country. Instead, what we can do, I think, is some self-reflection.
Starting point is 00:45:00 We can listen, we can learn, and we can ask questions. And so I'll end with a question. Erin, what can you tell us about the potential future of IVF? Oh, I can tell you a little bit and maybe a lot right after this break. Anyone who works long hours knows the routine. Wash, sanitize, repeat. By the end of the day, your hands feel like they've been through something. That's why O'Keefe's working hands hand cream is such a
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Starting point is 00:46:17 We're offering our listeners 15% off their first order of O'Keefs. Just visit o'Keefscompanion slash this podcast and code this podcast at checkout. In 2023, a story gripped the UK, evoking horror and disbelief. The nurse who should have been in charge of caring for tiny babies is now the most prolific child killer in modern British history. Everyone thought they knew how it ended. A verdict, a villain, a nurse named Lucy Letby. Lucy Letby has been found guilty. But what if we didn't get the whole story?
Starting point is 00:46:53 The moment you look at the whole picture, the case collapses. Amanda Knox, and in the new podcast, Doubt, the case of Lucy Lettby, we follow the evidence and hear from the people that lived it to ask what really happened when the world decided who Lucy Lettby was. No voicing of any skepticism or doubt. It'll cause so much harm at every single level of the British establishment of this is wrong. Listen to Doubt, the case of Lucy Lettby on the Iheart Radio app, Apple Podcasts, or wherever you get your podcasts. China's Ministry of State Security is one of the most mysterious and powerful spy agencies in the world.
Starting point is 00:47:35 But in 2017, the FBI got inside. This is Special Agent Regal, Special Agent Bradley Hall. This MSS officer has no idea the U.S. government is on to him. But the FBI has his chats, texts, emails, even his personal diary. Hear how they got it on the Sixth Bureau podcast. I now have several terabytes of an M.S. MSS officer, no doubt, no question of his life. And that's the unicorn.
Starting point is 00:48:05 No one had ever seen anything like that. It was unbelievable. This is a story of the inner workings of the MSS and how one man's ambition and mistakes opened its fault of secrets. Listen to the Sixth Bureau on the IHeart Radio app, Apple Podcasts, or wherever you get your podcasts. Hi, my name is Madeline Cronfeld. My story is about egg retrieval and freezing because that's what I'm in the middle of doing. When I turned 38 in August 23, I found myself in a situation that I didn't expect.
Starting point is 00:48:53 I was single with no prospects of a partner and desperately wanting to be a mother one day. I've always wanted children and I've always been in long-term relationships, so I just assumed it would happen. I was married and divorced before I turned 30, and then in a year of long relationship after that that I thought was going to lead to marriage and kids. When it didn't, and after the death of my mom in May 23, I decided that I had to take matters into my own hands and start the egg freezing process. Given my age and test results, it's expected that I need to do three to four cycles to freeze the 25 to 30 eggs that the fertility clinic recommends. At more than $15,000 per cycle, this is a year.
Starting point is 00:49:40 would have been entirely cost prohibitive when I was younger. Of course, I would have had more eggs at that point, so maybe only one or two cycles. But even at a time when I'm more equipped to afford a large portion of this on my own, it's incredibly draining on my bank account and my emotions. So far, I've done two egg retrievals, one in February, 2024, and the second, very recently in April 24. Between those, I have seven frozen eggs. I'm happy to have any, but I'm also really disappointed that I don't have more. So I've been on this insane roller coaster of emotions, which is not helped by the extra hormones coursing through me. I plan on doing one more round, and then I'll reassess things with my doctor. What's getting me through it is knowing that I'm
Starting point is 00:50:33 actually doing something, even if I never need to use these frozen eggs or I do and it doesn't actually result in a viable pregnancy. I know that I'm privileged in the sense that I have an incredible support system of family and friends around me. I have the savings to afford it because my insurance doesn't cover any of this. I have the flexibility with my schedule to do it. and I live in Northern Virginia, which is a big metro area where there are excellent fertility resources. I feel really strongly that IVF, IUI, egg freezing, and any other fertility treatments are really empowering whether you do it with a partner or on your own. Right now I'm doing it on my own, and I really hope that one day I have a child, again, whether it's from one of the first,
Starting point is 00:51:26 these frozen eggs or naturally, but I can't wait to tell them how much I wanted them in my life. Hi, my name is Mallory, and I'm going to share my experience with IVF. My husband and I started trying to get pregnant after a year of marriage. We thought it would be easy. We were both young, healthy. Fast forward two years, and we had tried natural conception. We had tried Clomid and finally IUI, all without a pregnancy. So we started our first round of IVF. I injected. I injected. myself with a cocktail of hormones to stimulate my ovaries and got to experience all the fun side effects, weight gain, bruising, bloating, headaches, massive mood swings. I had blood work and vaginal ultrasounds routinely and was finally told to give myself the last injection of
Starting point is 00:52:18 HCG to stimulate my ovaries to ovulate. The next morning, I went under anesthesia for the egg retrieval. However, I woke up to my husband telling me it didn't work. We had to repeat. We had to repeat the injection and the procedure again in two days. The second time, they were able to retrieve about 20 eggs from my ovaries. But after this second procedure, I kept feeling worse and worse. I had severe nausea, vomiting, lack of appetite, abdominal tenderness, and bloating to the point I lived six months pregnant. When I finally couldn't take a deep breath, I went to the ER, I was diagnosed with ovarian hypostimulation syndrome, an exaggerated response in the ovaries, that caused swelling and leakage of the blood vessels into the abdominal cavity.
Starting point is 00:53:05 They drained about three liters off my abdominal cavity at the bedside, spent the night in the hospital because that promptly tanked my blood pressure, and then went home with a drain the next day to keep removing fluid over the next week. Two months later, we did have frozen embryos implanted. I gave myself progester injections into my buttock every day for 12 weeks. and thankfully, our daughter was born healthy without complications. Two years later, after using our last chromosomally normal embryo, my son was born. I found IVF to be incredibly difficult, physically, mentally, and emotionally.
Starting point is 00:53:45 I wish fertility and the possibilities of infertility had been discussed more when I was younger and I had been better prepared. I'm a health care provider in women's health, and I feel there's been a massive shift in awareness and perception of infertility. The rise of women finding platforms to vocalize their experiences with IVF and infertility has had major effects. I applaud the spread of information and the empowering and cathartic nature of women sharing their stories and forming communities.
Starting point is 00:54:15 But I see women almost daily who are terrified that they're infertile and won't have children because of what they've seen or heard. I think it's so important to provide accurate, honest information. None of us have a crystal ball to see what the future of our fertility holds. And while there are some tests that can give insight into general reproductive health, the fact of the matter is for most people, we never know how easy or hard it will be to get pregnant until we start trying. So let's start with how many babies are born via IVF, shall we?
Starting point is 00:55:16 Yeah, yeah. In 2024, most papers that I read, most figures say that, that the total number of humans that have been born as a result of IVF, like total globally, is 10 million people. That's amazing. I know. Isn't that incredible? Yeah.
Starting point is 00:55:38 Wow. And we had people who wrote in who were, quote unquote, test two babies. Yeah. It's what they call themselves. And, like, that's incredible. Like, that it still absolutely blows my mind that. that this is possible. Like, it is, it is so fascinating and everything that we went through in the last episode
Starting point is 00:56:00 about all of the steps that had to happen for us to be able to have IVF be a reality. And now that it is becoming something that for a lot of people, though, as we'll talk about, not for everyone, but for a lot of people is an attainable possibility. Like, it's, it's incredible. We've come so far. In 2022, globally, it was estimated that, well, globally it was reported that over 750,000 babies were born just in 2022. And that is to the kind of global registry of all places that report out their figures and their numbers. But just like in the U.S., it's not required.
Starting point is 00:56:40 And so it's thought that this is an underestimate. So it's possible that the real number was possibly closer to a million is what that. the paper that I read said. Okay. That's a huge number of people every year. That's wow. Yeah. What I will also say is that this is from a reported three million ART cycles each year.
Starting point is 00:57:07 Three million cycles of IVF or IVF with ICSI to get 750,000 babies. So when you think about what so many people have had to go through, when you have heard so many of these firsthand accounts and so many more of you who wrote in, a lot of these ART cycles are often required before there is a baby. Right. So this is a massively huge industry, like you kind of highlighted Aaron. And these numbers, this 750,000 babies, these 3 million ART cycles, they're not split in an equal fashion. We see that in the U.S. and we see that globally. On a small scale here in the U.S., in 2018, ART accounted for, I'm not calling it ART today. It's calling it ART last time.
Starting point is 00:58:05 Feeling a little spicy. A.RT accounted for 0.4% of babies that were born in Puerto Rico and 5% of babies born in Massachusetts in the U.S. That's like the biggest scale that we see. That is quite a range, yeah. It's illustrative. Globally, half of all people who have infertility or who are dealing with difficulty conceiving or infertility don't even gain access to medical treatment. And in many cases, people are seeking care for years before they can actually get access.
Starting point is 00:58:43 That's true in the U.S., that's true in Europe, but this is especially true in low and middle-income countries. And like you mentioned, Aaron, race and ethnicity are hugely impactful in terms of who has access to infertility services, both because of systemic disparities in, like, economics and access to health care, but also because of the biases of our health care system and the burdens of the infertility treatment process itself. And on top of that social stigmatization or distrust of the medical establishment, like there's a lot of layers of barriers to good infertility treatment, especially for marginalized communities in the U.S. and globally. Mm-hmm.
Starting point is 00:59:30 But we have come an incredibly long way in terms of the technology itself. And so I want to kind of focus on what some of those advancements have been, both for the good and for the, how do we do this going forward? Yeah. And what's interesting, I think, in going through and reading all of this about, like, how has IVF changed since the early days, some of the hugest advances in IVF in recent decades are now so commonplace that they're actually. just part of the IVF process that I described last episode.
Starting point is 01:00:10 Right. So they wouldn't even be considered like, ooh, this brand new, super exciting on the edge thing. It's like, no, that's just how we do IVF now. Yeah. But I want to highlight them because there were incredible advancements in the last few decades. ICSI is one of them. And that, again, is intracytoplasmic sperm injection, allowing for one single sperm to fertilize one single egg, like via a tiny needle.
Starting point is 01:00:33 this has allowed for successful IVF in the face of very severe male factor infertility, which was not possible before this. That's major. We talked last episode about blastocyst stage implantation, that is, growing the embryo or whatever you want to call it, until it gets to day five where it becomes that blastocysts, that wasn't the norm before. And this not only allows for more successful. implantation, but it also allows for the testing of embryos because there's enough cells there to be able to take some to be able to test. This has allowed for a variety of genetic testing
Starting point is 01:01:16 methods, which I want to spend a little bit of time on, because some of them are still a lot more controversial than I realized, and some of them are just amazing for people living with certain genetic conditions. But I also just want to mention single embryo transfer as kind of like a novel occurrence. And this is possible today, in part because of the things that I just mentioned, ICSI, blastocyst transfer, being able to do genetic testing, which has increased the success rates of each cycle of IVF. But single embryo transfer also substantially decreases the risks to both the person carrying the pregnancy and the fetus. So that has also been like a pretty huge technological advancement. And then there are a whole bunch more. And you mentioned Erin how as a marketplace
Starting point is 01:02:08 driven phenomenon, part of what IVF clinics have to do is get clients. And so a lot of them will offer a range of add-ons that they recommend or offer to patients that could potentially help their chances of having a live birth. And this is not just true in the U.S. This is across the globe. But the big thing that I learned about a lot of these add-on procedures is that many of them have little to know evidence that they're actually going to improve the chances of having a live birth. And in some cases, they could even be harmful. So I want to go into what some of those are and kind of like break down some of the data on what things. are really potentially helpful and what things are maybe just still in the stage of research,
Starting point is 01:03:01 and yet they're already being used in practice. So this includes things like assisted hatching. I don't know if you came across that, Erin. No, I did not. I, when I came across this, I was like, wow, I've never felt more like a chicken. Hatching. Okay. Assisted hatching. This has not great evidence from what I can tell. It's a little bit unclear. Maybe it works. The data seems pour on kind of all sides, whether it supports it or whether it's not beneficial. But basically what it is is it's using a laser or something to drill a little bit into this blastocysts prior to implantation to, because the blastocysts, because in order for implantation to happen, the blastocysts has to kind of break out of what's called the zona pellucida in order to implant in the
Starting point is 01:03:52 uterus. So it's basically like making a little crack in that to hopefully improve the chances of implantation. Assisted hatching. Assisted hatching is what it sounds like. There's not great evidence for it, though. So it's one of those where perhaps in certain situations, if you've had a lot of failed implantations or something like that, could it be beneficial? Maybe. But I think, and this is true for a lot of these potential add-ons is that if they're offered as just a suite of items, I can imagine if you are someone who has tried so many different things, of course you're going to try anything that someone says could be beneficial. And so I think that's where these things can become really problematic if they're not well-regulated.
Starting point is 01:04:44 Okay, so I have a question about assisted hatching. Okay, give it to you. said that there's not good evidence. Is there evidence in one direction or another, or is it just so context dependent? Like, is there a trend toward assisted hatching being potentially, like, decrease rates of success? It's a good question. I read a Cochran review about it, which basically said that the quality of data that we have is so poor that you can't come to any conclusion one way or the other. Okay. I see. But given the fact that it's sold as an add-on, It's like maybe, you know.
Starting point is 01:05:19 Maybe it's going to help you, but yeah. How much is it? And in the U.S., do insurance companies cover this? Such a good question, Erin. I didn't even look into the, like, numbers of prices on this because it varies so much, like state to state, country to country, insurance to insurance. I would guess that anything beyond, like, a quote unquote standard cycle of IVF is probably not covered by most insurances. but I don't know for sure because I didn't look it up.
Starting point is 01:05:49 Okay. Yeah. And there's more things, too. There's certain special culture media that some facilities might use that they call it sometimes embryo glue that supposedly makes the embryo more likely to implant. Not a lot of data for anything like that. There's something called endometrial scratching, which is exactly what it sounds like, scratching the endometrium to try and help implantation.
Starting point is 01:06:15 There's not any substantial amount of evidence that that is going to increase live birth rates. Then there are things that the evidence is a little bit more specific and nuanced. So that's things like elective freeze-only cycles. That would be rather than trying to do a cycle of IVF where you implant the embryo, like right after that five days, you freeze all of the embryos, and then you plan for a cycle later. this doesn't seem to increase the chance of a live birth. That is not what the data shows. But it can decrease the risk of ovarian hyperstimulation syndrome.
Starting point is 01:06:56 So it's kind of a trade-off. And then we get into pre-implantation genetic testing as a part of IVF. And I want to spend a little bit of time here because it's become a huge part of the IVF process. Before we do this, real quick, can I just ask a question about these add-on? Because I'm very, so. There's also more. Like, there was so many more that I found. Yeah. So I guess is there a certain point or threshold of evidence or something when an add-on becomes part of the procedure? You know, like, and then how our take-home baby rates, quote-unquote, reported, oh, you know, based on add-ons? Like, can you do that for a, a clinic where you say, okay, well, what does this add on? How does that change the rate versus
Starting point is 01:07:52 that, like, are those things communicated clearly? Mm-hmm, mm-hmm. These are good questions. Yeah, I guess I, yeah, I, no. I don't have an answer to those questions. They're very good questions. I rely, when I'm looking these things up to see, like, what's the data on X, Y, and Z? I, like, full disclosure, I used a lot of up-to-date to get sources, but then I also was looking at Cochran reviews to see because they do a lot of looking at all of the data that exists and what what's the quality of the data. So there is IVF that's being done on the regular through these clinics. And then there's IVF that is still being done at teaching institutions and academic
Starting point is 01:08:32 institutions where they're collecting data for research on these things. Right. So that is where the data is going to come from to then determine is this new or novel technology going to become a part of standard practice. Right now, all of those things that I mentioned, with the exception of pre-implantation testing, which we'll get into more detail on, but all of those other ones that I mentioned are not part of a standard IVF procedure. So that is why they're considered as add-ons. And again, there are more. One source that I found that was very helpful, especially as like a patient-facing resource, was actually out of the UK, and it's a website. I'll link to it on our website. but it had really great pictorial graphics of all of the different types of add-ons and what the
Starting point is 01:09:21 evidence was, whether it was evidence that it could be helpful, whether it was evidence that could be harmful, or whether there just wasn't really good evidence for it one way or the other. And it had like a green or a red or a, you know, question mark or whatever. So that was a really helpful resource. And some of them, you know, you click on it and it'll say, well, in this particular scenario, it could be beneficial, where in all of these other situations, we just don't have any evidence for it. Right. I mean, and it's a really interesting thing, but because like you said, if you've tried this before or you just want this to, do you desperately want this to work,
Starting point is 01:09:59 then it seems like, okay, yeah, you would try anything that you possibly could if you can afford to do so. Right. And then it's, it is really interesting because even if we don't have good data now, in the future, we hopefully will have better data to be like, oh, this shouldn't be an add-on, this should be part of standard practice, or this doesn't do anything. Exactly. It just takes time to get to those things, yeah. Yeah. Which is still, it's just still so complicated.
Starting point is 01:10:28 It is because you're living through, you're living through a time where things are changing so rapidly that we don't have all of the answers. Mm-hmm. And that is true for pre-implantation testing. So pre-implantation genetic testing, it goes by a few different names. There used to be kind of two different suites, one that was called pre-implantation genetic testing, or PGT, and one that was pre-implantation diagnosis, or PGD. Okay. Now they have split those, and they're all called PGT.
Starting point is 01:11:06 but then they have different letters after them. So I want to go through what each of them are because what's important is that the three different main kinds of pre-implantation genetic testing are used for very different things, and so the research is actually very different on the utility of these different things. Pre-implantation genetic testing, PGTA, was the first one.
Starting point is 01:11:33 And that's pre-implantation genetic testing for aneuploidy. Antiploid is when you have a different number of chromosomes than most people, an extra or one missing. So this type of genetic testing is the type that tests the embryo to make sure that there are the correct number of chromosomes. So it's looking for trisomies or other anuploids. This is things like Edward syndrome or Down syndrome, etc. In most of the literature that I read,
Starting point is 01:12:02 this is still kind of on the line of a more experimental and research procedure, but it is very, very commonly used in clinical practice. There isn't data that it improves live birth outcomes. And there's a lot of reasons that go into this. Part of the thought is that something that can happen as this embryo is dividing, and I'm sorry if this is getting too nerdy, but I find this really fast. fascinating. Never apologize for being nerdy, Aaron.
Starting point is 01:12:38 As this embryo is dividing, every time that these cells divide, there's going to be little mistakes that happen. And so as these little mistakes happen, early enough on, it seems more and more likely that what's called mosaicism, so different cells actually having a different number of chromosomes might be a part of typical embryogenesis. And there are mechanisms in place because embryogenesis is phenomenally fascinating that many of these blastocysts will self-correct later in development. Or in some cases, if this was happening, for example, in a uterus, might end in a miscarriage, right?
Starting point is 01:13:20 But when we do pre-implantation genetic testing, we're taking so few cells that we can't tell if something is a mosaic or not necessarily. And so what this can end up happening is having false positives and also potentially false negatives. But the false positives seem to be what, in terms of lawsuits and issues that have come up, seem to be the biggest issue because what it leads to is discarding of embryos that could have been viable, that could have been not have an aneuploidy, which means that you're then discarding embryos, and maybe you only had two or three viable embryos to begin with, right? Mm-hmm. Mm-hmm.
Starting point is 01:14:04 But the reverse is also true, where you could have a falsely negative sample that could end up resulting in a miscarriage. And so then you went through this whole cycle and thought that this embryo was going to be, have a good chance of surviving, and then it doesn't. So it kind of goes both ways. And do we have any numbers on the rate of false positive or false negatives? Because it varies so much place to place, I don't have, I don't have numbers on that. Okay. Yeah. But that is kind of one of, I think, I didn't realize, because I had heard a lot about pre-implantation genetic testing, and I kind of thought that it was just part of the process of IVF, but it isn't. But in a lot of places it actually is, especially if you're over a certain age, it's kind of often offered. Like you were asking, when is this offered as part of the suite? I think it's very possible that that is the way that this will go. But right now, because you only can take so much DNA, and we only can do so much testing on that DNA, right now, the technology
Starting point is 01:15:06 doesn't seem to be good enough to have, like, a super, super high sensitivity and specificity to be able to offer this, like, across the board as, like, part of the standard practice necessarily, or at least when it is offered, it doesn't improve life birth rates. Okay. But while this process is similar to, it is separate. from a couple of other pre-implantation genetic testings, PGTM, which is pre-implantation genetic testing for monogenic disorders, and PGTSR, which is testing for structural rearrangements. These are the types of genetic testing that would be done if an individual or a couple
Starting point is 01:15:47 has a very high chance of passing on a known genetic disorder, or if they, for example, were having recurrent miscarriage and through their infertility evaluation, found out that they had a structural rearrangement in one of their chromosomes. So this is what someone who maybe had a history of Huntington's or sickle cell or cystic fibrosis or things like that would use. These are part of the standard suite for people who have those because you're looking for just these single gene chromosome things, if that makes sense. So it has like a different utilization and a different success rate, in part because
Starting point is 01:16:28 the population that you're doing these testing in is very specific rather than everyone who's seeking out IVF. That makes sense, yeah. Yeah. So these pre-implantation genetic testing technologies have been incredible and still have kind of a lot of work to go. And they also, like you were talking about, Aaron, kind of do open the door to some potentially ethical gray areas because these types of technologies are the same ones that can be used for
Starting point is 01:16:58 things like sex selection, which means choosing the sex of your embryo prior to implantation. Different countries have implemented different policies on whether or not this is an acceptable practice. And there's other things that pre-implantation genetic testing can be used for. It has been used in the past for selecting specific HLA genotypes. And this is so that you can select an embryo that is born, that is compatible, like genetically identical with their HLA type to a previously living child who, for example, has a very severe cancer or something like Fancone anemia. I think that's the example, the first time that this was used, or some other disorder where they need a bone marrow or some other type of transplant. So you can choose an embryo
Starting point is 01:17:48 that will match that living child and then be able to essentially save that child's life with their sibling. These are things that have happened today and are possible because of this technology. And I am not here making a judgment to say that one is right and one is wrong, et cetera. But all of these different technologies force us as societies to be able to have conversations about where the lines end, essentially, and where the gray becomes more black and more white. And that is especially true as this technology continues to develop because the things on the horizon for IVF, Erin, are incredible. Of like what, Erin? There are three major areas that IVF will go and they're not far off.
Starting point is 01:18:44 One is mitochondrial transfer. Have you heard of this? Oh, yes. If you've heard of the three-person IVF? Mm-hmm. It's incredible. This is transferring mitochondria either from one's own cells, but from like different cells other than your eggs, or from a different person entirely.
Starting point is 01:19:08 For example, if you had some type of mitochondrial gene disorder and transferring the mitochondria into the egg and then using sperm to fertilize that egg. And so that's why it's called three per centriced. or three parent potentially because that mitochondria could come from someone who's genetically separate from you or it could come from different cells in the oocyte donor's own body. But this is amazing. I mean, I'm sorry, mitochondria, like moving a mitochondria from one cell to another? That's amazing. There's more, though. People have been working on inducing adult stem cells, like our skin cells, to become sperm cells and egg cells. That is wild. It is wild.
Starting point is 01:19:58 This process is called in vitro gametogenesis or IVG, and it sounds like science fiction, but they've already done it in mice. I mean, everything sounds like science fiction until it's not. Right? I just think about how in Star Trek, in like the 60s, in the original Star Trek, they didn't have sliding doors yet, but all of the doors slid. And so, and so, So they literally had people standing there and, like, they physically moved the doors open whenever they would walk through. Did you know that? I just remember the cell phone, like the transponder or what I can't remember what it was called. Transponders.
Starting point is 01:20:32 That's right. Was it transponders? Okay. Yeah. Yeah. Still a few more steps until we get to Star Trek world. But, yeah. Only a few, though.
Starting point is 01:20:42 And, yeah, so this could give someone the capacity to, say, generate more eggs if you had poor Oocyte quantity or, if you had cancer or like just so many possibilities, right? And then like you mentioned, Aaron, the improvements in gene editing and CRISPR technology. That opens so many doors for not only IVF, but so many medical conditions that we have talked about on this podcast before as well. The things that people are working on are incredible and something. Societies are going to have to reckon with what the ethical implications of all of these things are and how we decide that they are regulated. And I mean the royal we, not me and you. My goodness. Yeah. It really stretches the limits of imagination in terms of like what is possible,
Starting point is 01:21:41 what could be possible, things that I didn't know about until doing these episodes. Yeah. Like we talked about, you know, off-camera. Uterine transplants. Yeah. Just like so many things that have completely opened the door. And it's like it's open the door and a little bit of opening the door to a world of amazing possibilities and a little Pandora's box at the same time in terms of regulation and in terms of technology evolving faster than our imagination can see like where it. it will go and how it will be used. And it's just, it really forces us to confront sort of our
Starting point is 01:22:25 own feelings about these things that we don't know where they're going. And it's not just IVF. It's right. It's AI. It's AI. You know, it's like what cell phones have given us. It's how much are they listening to me always. It's, they're always, always. No, it really is. It's, it's like you said, It's just the, it is the ability of technology to develop so rapidly and then come online so rapidly and us have to then look around and realize, oh, what does this mean for me and for us as a society? And who decides that? Right.
Starting point is 01:23:03 That's the important question. And then, especially when it comes to things like this, is who gets access and who decides who gets access? I read a really interesting. paper that was really making an argument for access to infertility treatment and including IVF specifically as a human right. Yes. And it was framing it in a way that I had never really considered before.
Starting point is 01:23:29 And it was just so, it's so interesting. Well, and that is actually what if you compare contrast, I didn't really get into this, but if you compare contrast sort of the reception to IVF in the years following 1978, it seemed at least from what I read, be more quickly embraced and normalized in the UK where a lot of the physicians who were beginning to practice IVF, including that team that first, you know, led to the first IVF baby in the world, they really, their stance was a right to reproduction. Right. And it was like, this is a thing that will allow people who are not able to have children to have
Starting point is 01:24:11 children. Right. And that wasn't really as much in the U.S. And so I think that like, and also, I mean, there are a myriad of reasons why the U.S. reacted differently than other parts of the world in terms of IVF and still does today and so on and so forth. But I think that has been a really fascinating discussion that a lot of people, yeah, have, that I've seen a lot sort of come up more recently, too. And there's still so many differences in who gets access. to IVF in this country versus that country. Even in, I was reading, I don't know why, but about Italy, their rules that they made in like the early 2000s were super, super restrictive.
Starting point is 01:24:53 And so then they've had to like work really hard to repeal those to an extreme degree. And it's just, yeah, it's just, it varies so, so much place to place still. And that's just reflective of how many different people feel so differently about so many aspects of something like IVF. Yeah. And controlling women's bodies as an example. Yes. Yeah. But yeah, but that's, that is IVF. We've come so far. We have so far to go. I've learned so much. We've learned so much. And also there is so much more that we didn't even begin to talk about. I think this was for me such a, meaningful topic to research about because like we've talked about, I had this conception of IVF in my head,
Starting point is 01:25:51 this perception. Like I knew, okay, this is what it was, this is how it worked, all of these different things and not really, it just is layers upon layers upon layers, even though I feel like we could have done so much more. We always will feel that way, Erin. We always will feel that way. I do feel like this was a really meaningful topic to do, and I am just really appreciative of the amount of literature that exists out there, how many layers are involved in IVF in so many different facets, but especially always coming back to these firsthand accounts and like the incredible range of experiences and emotions and feelings and outcomes and everything that people have with IVF and fertility and insuffility and insurm.
Starting point is 01:26:39 infertility and egg freezing and all of these different things that it's like, IVF is not just IVF. It is one million, bagillion things. Yeah, we are just really grateful that we get to do this as a job and talk about these things and learn about these things and cover this topic. And cannot thank you all enough for sharing your stories with us. And I hope that through these three episodes,
Starting point is 01:27:07 everybody feels like they got something out of this because I know that I certainly did selfishly. Same. Yeah. Also selfishly, but same. And if you want to get even more out of these sources, we've got lots of them. I have a bunch of papers that have more detail on this, but I will also shout out a couple of the books again. One is called The Pursuit of Parenthood by Margaret Marsh and Wander Ronner. And then the other book is called IVF and Assisted Reproduction, A Global History by Sarah Ferber, Nicola Marks, and Vera Mackie.
Starting point is 01:27:47 I will definitely post the link to that website that I mentioned. So many papers from like the CDC Vital Statistics Report to papers on pre-implantation genetic diagnoses. Like so many, so, so much data. Our website, This Podcast Will Kill You.com, under the episodes tab, you will find the list of all of our sources from this. episode and every single one of our episodes, that's where you can find it. Thank you to Bloodmobile for providing the music for this episode and all of our episodes. Thank you to Leanna Scuilachi and Tom Brayfogel for the incredible audio mixing. Thank you to exactly right.
Starting point is 01:28:24 And thank you to you listeners. We really hope that you enjoyed this journey with us. Yeah, yeah. We hope that you learned something. Hopefully. Yeah. Yeah. And a special thank you, of course, to our wonderful, lovely, generous patrons.
Starting point is 01:28:42 We truly do appreciate your support. Yeah, we do. It really means a lot. Also, do you guys still want, like, a series on pregnancy? Because we're planning that. Yeah, let us know. Is it too much? Have we gone too far?
Starting point is 01:28:57 I mean, it'll be like six months from now, so. Yeah, yeah, yeah, yeah. Not anytime soon. Yeah. Well, until next time, wash your hands. You filthy animals. I'm Amanda Knox, and in the new podcast, Doubt, the case of Lucy Letby, we unpack the story of an unimaginable tragedy that gripped the UK in 2023. But what if we didn't get the whole story?
Starting point is 01:29:48 The moment you look at the whole picture, the case collapsed. What if the truth was disguised by a story we chose to believe? Oh my God, I think she might be innocent. Listen to Doubt, the case of Lucy Letby on the IHeart Radio app, Apple Podcasts, or wherever you get your podcasts. I'm Clayton Eckerd. In 2022, I was the lead of ABC's The Bachelor. But here's the thing. Bachelor fans hated him.
Starting point is 01:30:15 If I could press a button and rewind it all I would. That's when his life took a disturbing turn. A one-night stand would end in a courtroom. The media is here. This case has gone viral. The dating contract. Agree to date me, but I'm also suing you. This is unlike anything I've ever seen before.
Starting point is 01:30:34 I'm Stephanie Young. Listen to Love Trapped on the IHeart Radio app, Apple Podcasts, or wherever you get your podcasts. This is Special Agent Regal, Special Agent Bradley Hall. In 2018, the FBI took down a ring of spies working for China's Ministry of State Security, one of the most mysterious intelligence agencies in the world. The Sixth Bureau podcast is a story of the inner workings of the MSS and how one man's ambition and mistakes opened its fault of secrets. Listen to the Sixth Bureau on the IHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

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