 So good afternoon and welcome to the McLean Center for Clinical Mental Ethics Seminar Series. I'm Marshall Chen, I'm one of the Associate Directors of the Center, and it's my pleasure to introduce today's speaker, Dr. Ashish Prenkumar, Assistant Professor of OBGYN at the University of Chicago. Ashish is a real rarity of practicing maternal fetal medicine doctor and a cultural anthropologist. He received his MD at Boston University, and a PhD in cultural anthropology at Northwestern, residency in OBGYN at UCSF in San Francisco, and then a maternal fetal medicine fellowship back at Northwestern. Today Ashish will talk to us about abortion and maternal fetal surgery. Ashish. Hi everybody, I think folks can probably hear me. So let me just go ahead and bring up my slides here. Great, so I only have one disclosure. I'm a consultant for GenBioPro, but otherwise we have a lot of ground to cover in terms of thinking a little bit about these two issues and how they're related to the reproductive health landscape here in the United States, and particular unique considerations when we start to think about bioethics of pregnancy, the fetal subject, and for me as a cultural anthropologist, theories around reproductive health and governmental interest in reproductive health. So we're gonna go through four key aspects. And this is not so much a discussion of like rigorous data that we have, that we can sort of put forth a new agenda, but sort of a framework for thinking about what research questions are going to be meaningful, especially in a post-op world, in relationship to innovations in reproductive health care, and particularly when it relates to maternal fetal surgery. So for folks in the room, we're gonna go over very briefly some epidemiology and a brief discussion of the legal landscape related to abortion access here in the United States. We're gonna turn to two publicly available cases around a unique, not genetic, but a structural anomaly called bilateral renal agenesis. And we'll talk a little bit about that. And two stories as it relates to abortion care and maternal fetal intervention. We'll then turn the lens a little bit more towards theory and thinking about, well, how do we unpack the abortion landscape in the United States and this issue around bilateral renal agenesis by hearkening to Foucault, and thinking a little bit about his initial iterations of biopolitics and how his interlocutors have really used this to think more about reproductive health and theories around governmental interest in reproduction. And then finally, I make the argument that a new way to think about this issue and the unique issues that we're facing here in the United States is really to focus on the role of affect and affective theory as it relates to biopolitics and how we can use this to understand unique and really novel ways that politics, the juridical legal system and biomedicine are becoming entangled in each other as we start to move forward in progress in reproductive health care provision and simultaneously degrade access to abortion here in the United States. So like Dr. Chen mentioned, I'm an obstetrician gynecologist. I'm also a maternal fetal medicine subspecialist. I identify as a cultural medical anthropologist and much of my work focuses on optimizing health outcomes for pregnant individuals who are carrying pregnancies affected with congenital anomalies. But this necessitates a particular focus. It's very odd for cultural anthropologists. So go ahead. Oh, I'm so sorry. Is that a little better? I'm so sorry. I thought I was speaking in. But given my framework and my perspective, a lot of what I focus on tends to be attention to reproductive technologies. So things like ultrasound, prenatal diagnosis, so chorionic villus sampling, amniocentesis, as well as other surgical technologies like maternal fetal surgery where surgery is performed on the fetus while still in utero for improvement in neonatal and perinatal outcomes. But because of my unique position as someone who works strictly with high risk pregnancies and with these technologies, my interaction with abortion care is not the most common because the vast majority of abortion or the vast number of abortions in the United States primarily are done in the first trimester far before anyone like me is ever involved in a pregnancy. So I tend to be involved in what is called extraordinary abortions to quote legal scholar, Katie Watson. So I also think very much in this circumstance in the spectrum of extraordinary abortion, how people, institutions and governmental agencies think about pregnancy-capable people, think about reproduction, the fetus, parenting. And importantly for me because I deal with the congenital anomalies, the concepts around ability and disability, which are obviously weighty, meaty topics that a lot of biothesists have gotten into over the years. So before we kind of take a deep dive into this, I wanna situate how we think about abortion, especially pre and post-dobs, bless you. So I'm sure folks are released semi-familiar with the turn away study. It's been all over the news over the last few years. Diane Greed Foster just got a MacArthur Foundation Fellowship which is a very big deal, but her book is worth picking up in terms of thinking about well, how do we think about abortion access and what happens to individuals who are unable to access abortion and subsequently carry a pregnancy onwards. Simultaneously, legal scholar David Cohen and sociologist Carol Jaffee have written a book now. This is pre-dobs called obstacle course, which actually highlights in detail the issues that many individuals faced when they made the decision to end a pregnancy. So these two studies are sort of seminal in their own rights, but provide a nice groundwork for some of the issues I'm talking about. So this data comes from the CDC from 2020. So again, pre-dobs and there's always a lag in epidemiologic data around much of anything inclusive of pregnancy and pregnancy termination. So one of the things that we can see here is an overall decrease in the number of abortions between 2010 and 2019. But when we take a look at the breakdown of what gestational ages are individuals undergoing termination of pregnancy, we see that when I tend to get involved, that is when we start to see either maternal illness, which I'm not really talking about, but also diagnosis of fetal anomalies, those tend to be diagnosed well into the second trimester. So above 14 weeks, though they only make up a fraction of the terminations that occur in the United States. So again, using Katie Watson's phrase, an extraordinary abortion, but these are extraordinary circumstances that do not make up the majority of abortion experiences that are described by individuals in the United States. But this all brings us to the legal landscape. And for those of them, I just wanna give a very broad overview. I think folks may already kind of have a sense of this, but I use this to sort of think a little bit about how the juridical legal system and governmental system in the United States thinks about the fetus and really thinks about the fetus as an object in need of protection, particularly legal and juridical protection. So this original conception comes down from the original discussion around Roe v. Wade. And the idea here is that Roe v. Wade came down overturned state bans on abortion because it emphasized that the decision to end a pregnancy was a private decision between a pregnant individual, their physician, which again has its own connotations about who can provide an abortion in the United States. But the idea is that this is under the right to privacy and that states can prevent abortion after what is considered to be quote unquote viability, which is a very difficult topic to discuss without getting into the weeds. But it does discuss the option for abortion in the setting of maternal health complications. But the idea that the state has an interest in the fetus at this sort of threshold of viability. And this comes from Justice Blackman's initially sort of two-tiered approach to how we think about state interest and state protection of pregnant people. And I bring this up because this sort of branches out a little bit more in terms of how we think about next steps for thinking about these issues in a post-op's world. Up until viability, the state has an interest in the pregnant individual. After viability, the state now has an interest in the fetus because it may be in the state's perspective a potential individual. And that concept of potentiality has its own long intellectual lineage within bioethics, within religious literature that is far too complicated to get into right now but nevertheless sort of has this undercurrent within American political thought and legal thought as to how we think about abortion legislation and abortion policy here in the United States. It's important to remember that with the Dobs ruling, what ended up happening is the juridical legal system effectively said, well, this is not a problem for the federal government or even the US constitution. This is a state problem. So we kind of reverted back to a pre-row era. And because of that, we saw a wave of abortion bans that went into effect within days to hours to days after the Dobs decision had taken place back in June of 2022. So the idea here and what many legal and social science scholars have written about is that this is a very clear signaling that we have no longer focused on the pregnancy capable individual or the pregnant individual what have really turned a more keen eye towards the fetus as an object of protection, juridical legally as well as in this situation and what I'll end up talking a little bit about is how this gets melded into biomedically. So this is a most recent map from the Gutmacher Institute as of a couple of weeks ago that maps out the abortion restriction policies that are in place by state. And I bring up, I don't know if my cursor, you guys can probably see my cursor, but you can see Illinois as one of the few states where abortion is protected. And because of the reproductive health act in 2019, there are a variety of protections in place here in Illinois that allows us to provide abortions, have a government payer coverage of abortion, which is not common and takes away a quote gestational age limit. So there is no like certain number that if you pass that number, you are no longer able to access abortion services here. So this has been sort of a boon for a lot of individuals were coming from all of the other states in which abortion is heavily regulated or is deemed to be illegal. So this kind of plays a little bit more into what we're seeing in terms of travel and number of abortions. So these data also come to the Gudmacher Institute from December of 2023. And what they are demonstrating is the number of abortions that are provided in the US healthcare system, which again, I emphasize because a lot of abortion provision is done in freestanding clinics and because of the marginalization of abortion care in the United States, it has been quite difficult to be able to accurately identify the number of abortions that occur because a lot of this is voluntarily provided to a large degree. The CDC does require a form of surveillance but that kind of is beyond the scope of this discussion. But what you can see here is that in Illinois, we are seeing over 15,000 individuals at least between January and June of 2023 who are seeking abortion care services here. So again, demonstrating that Illinois is really seeing the brunt of abortion care in the Midwest providing the brunt of abortion care in the Midwest but that because individuals are having to travel and having to come here, we are dealing with these issues around people coming at later gestational ages. People are coming with multiple complications in their pregnancy but are seeking abortion care here. So it creates a very unique landscape in which to ask these questions but also makes it a really complicated way in terms of thinking about provision of care and some of these issues around congenital anomalies and novel interventions and reproductive health. So with that sort of broad landscape, I wanna sort of transition a little bit to talk about two stories related to congenital anomalies. One that involves maternal fetal intervention and one that involves abortion. And this all is related to diagnosis of bilateral renal agenesis. And for those in the room, I'm not super familiar. How many people have a biomedical background or not but we'll kind of get into it. So as folks probably remember from high school anatomy, traditionally you're born with two kidneys. They're both fed by big arteries that come down from the heart. You can see here in red this comes from our like anatomic atlas. You can see the left and the right kidney. We can also see this on ultrasound pretty well. So when folks come in for their anatomic survey, which is usually done between 18 and 22 weeks to take a look, does the brain look okay? Does the heart look okay? Are there 10 fingers, 10 toes, that sort of thing? We can actually look at the kidneys and look at the vasculature to the kidneys to make sure is it present or are there any anomalies. So you can see here on the left hand side of the screen, this is a coronal view. So essentially a cut down like this facing the fetus. You can see the descending aorta here followed by the renal arteries on the left and the right. So two arteries, presumably two kidneys. You can take a look on the right hand side of the screen which looks a little different. So you can see the descending aorta here, the branch points towards your common iliacs but what you're seeing is that absence of that T. There's no renal artery. So this is consistent with a diagnosis of bilateral renal agenesis or the lack of formation of both kidneys. So if a pretty rare diagnosis overall only happens in one out of 3,000 to 4,000 births. 30% of cases are associated with other structural or genetic anomalies. The list is quite long so we're not gonna really get into that. But traditionally in sort of harkening to the University of Chicago a little bit, this original diagnosis and sequence was described by Edith Potter here at Chicago lying in now over a hundred years ago. The idea is that with bilateral renal agenesis and utero there's a lack of production of fetal urine which is the main production or the main component of amniotic fluid. Without amniotic fluid, the fetus ends up in a stuck position. So it has a very classic finding of abnormal facies, constricted limbs, but also importantly because the amniotic fluid is critical to lung development. It actually distends the bronchial and brachial tree allowing for distention of the alveoli and development of the pneumocyte. Without that, you get lethal pulmonary hypoplasia. And as a result, the Society for Maternal Fetal Medicine which is my governing body describes this as a quote, life limiting condition, unquote. Do the high risk of both stillbirth, what we also call in utero demise and neonatal demise either due to pulmonary hypoplasia or a host of other consequences because of underlying structural or genetic abnormalities. So in this situation, how do pregnant individuals navigate this terrain, right? You go from this diagnosis and then you go down the pathway of what do you do about it? So this is the very, I guess a superficial schematic in terms of how we kind of go down this diagnostic pathway. You start on the left hand side of the screen, someone gets diagnosed out in the community at an ultrasound unit with a community hospital or maybe even at an academic medical center like here. They may see someone like me, a Maternal Fetal Medicine subspecialist or also known as a high risk obstetrician to talk to them a little bit about options. They may end up traveling from there to what are known as fetal care centers or FCCs. These are sort of unofficial centers. They're usually associated with a children's hospital. We have one here, there's one over at Lurries, there's one at Advocate. They essentially are hubs for high risk obstetricians as well as pediatric subspecialists to come together to counsel patients around congenital anomalies, talk about options for management. Some of those include the vast majority of them include either nothing really done prenatally, sometimes surgical management or medication management postnatally and very rarely about 5 to 10% of the time an option for in utero intervention. So you can see the three different branches, either expected management, so do nothing. MFS or Maternal Fetal Surgery, again, very uncommon, only a fraction of the cases undergo this or for those that are interested after hearing about the prognosis, long-term outcomes, some folks decide that they wanna end the pregnancy and will proceed with accessing abortion care. And as you can also tell from this chart, there are other areas where people may access abortion care. I bring this up to say this is a theoretical framework. There is no data that we have in the United States that accurately describes this in a meaningful way. The closest we have are the turn away study, which sadly did not include people with congenital anomalies that is changing now with Dr. Foster's turn away 2.0 study and Carol Jaffee's study on how we think about accessing abortion care. So we have very limited data in terms of how people navigate this very convoluted framework. So when we think about bilateral renal aid genesis to kind of turn back to that, we talked a little bit about expected management, so do nothing with the option to potentially speak with perinatal palliative care services given the severity of the neonatal outcome and talking a little bit about transition after delivery and changes in obstetrical management, which we can get into if folks have questions. Option for termination of pregnancy, but also, and I mentioned this historically because this has changed in the last month, the option to enroll in a randomized control trial looking at something called serial amniotic infusions. And what this is, is a needle-based procedure that can be done at a feudal care center where we instill amniotic fluid with like warm, normal saline every couple of weeks or so during the pregnancy to essentially give back fluid to distend the lungs. Idea is that by providing that fluid back, we've now theoretically improved lung development and there are case reports of this and we'll kind of get into that in a little bit where lung development could be improved and therefore the neonatal demise or the death of the neonate due to lethal pulmonary hyperplasia could be reduced, that's the theory. Now, this is all well and good, this theory that, okay, we could improve the lung development. It doesn't change the problem that the, if the individual were to carry the pregnancy and deliver a live born neonate, it doesn't have a functioning genital urinary system, right? That is a huge issue. People argue that, okay, well, renal replacement therapy, dialysis, transplant has gotten so good in the last 30 years, this makes sense, right? If we can change the lung problem, if we can improve that, then maybe we can get them onto RT and then subsequently to transplant. And like I mentioned, we have, there are case reports, there are very prominent case reports. So the one that's probably the most prominent is, her name is Abigail Butler. She's a daughter of a Republican representative, Jamie Butler from Washington. She famously was diagnosed with bilateral renal agenesis back in 2013, went to Johns Hopkins, ended up having serial ambient infusions as part of experimental intervention, delivered her child, child lived, ended up getting a renal transplant and is now alive at 10 years of life and is doing allegedly quite well. It was very prominently displayed on like the Johns Hopkins website, the Stanford University, and so Lucille Packard's website because they're the ones who did the delivery and managed the child after delivery. I bring this up because this also informs a very important context in terms of how we think about this anomaly. But you could imagine everything I just listed, there's a lot of concerns, right? The idea that every time we do an amniotic infusion, we're putting a needle through a pregnant individual into the uterus and to the amniotic sac. That can lead to infection, rupture of membranes, it could lead to bleeding, preterm delivery. It's not a benign thing to keep doing to somebody. We also don't really have a clear understanding of who the right candidate is for renal replacement therapy after delivery. You could imagine it's very different if there are other structural anomalies or genetic issues. That also plays a significant role. There are morbidities related to renal replacement therapy. Putting someone on peritoneal dialysis is not a benign thing. And it's not that kidneys grow on trees, right? The donor pool for kidneys is quite limited and there have to be important considerations in place, not just in terms of neonatal size and weight, but also ability to adhere to medications and knowing full well that the kidney has a light and has a half-life. It doesn't last forever, right? So the idea with this as with all fetal therapy is, and again, there's not a kind of way of putting this, but is it kicking the can down the road a little bit in terms of the morbidities that might be accrued throughout this time period. So this brought us to the RAF trial. So the renal anti-jaminoce fetal therapy trial just got published in JAMA in December. And we're not gonna go through the results, but it's important to contextualize this because this trial was ongoing at the time these two stories were widely published. So it was a prospective non-randomized trial at nine fetal care centers across the U.S. And essentially it was between 2018 and 2022. There were multiple other sites. There was upwards of 40 now, even more than are not registered fetal care centers in the United States that provide some level of fetal intervention. Many provided amniote infusion. So the idea is that there was a more a legend moratorium on amniote infusions during the time of the study. Individuals would have to be evaluated at a fetal care center and then would be randomized or not randomized, but selected to either undergo amniote infusion or they would select for expected management. The primary outcome based on the DSMB was survival to 14 days of life. Which again, for everything going on given the overall lethality that we ascribe to BRA, this was seen to be as a reasonable primary outcome. So with that background on abortion and bilateral renal agences, I wanna turn to the story of Andy and Emmy. So this was covered in multiple news agencies. So USA, like mostly lay news agencies like the Atlanta Journal Constitution, USA Today and a host of other blogs. So the article that ran in October of 2023 was titled She Just Needed a Chance, How a Florida mom fought to keep her daughter alive and once this is a picture of the mom, Andy and her daughter, Emmy. So this is a quote lifted from the USA Today article. So most doctors said her baby would be born without kidneys had no chance to survive. But Andy Mahoney said she refused to accept that fate and now her two year old daughter, Emmy's fight against the rare and often fatal condition is living proof of the power of perseverance, faith and science. As an anthropologist, I find that incredibly fascinating. Those three words perseverance, faith and science because for a lot of us who work in this space around science studies, science and technology studies, these three things have always been a focus of ours, how science works in this way and particularly in a quasi religious way and how the elision between science and faith go together. And so this is a particularly interesting way to think about Andy and Emmy's journey over the last few years. So this is a timeline of events that comes from sort of collating a couple of news articles and with a MFM's eye to all of this. So in November of 2020, Andy's fetus was diagnosed with bilateral renal agenesis. Important to remember, Raft is ongoing at this point. Patient ultimately went to Johns Hopkins where the Raft trial was being headed to see if they were eligible for being part of Raft. They were not deemed a candidate. Instead they searched quote for weeks for an MFM who'd be willing to perform amni infusions and they found one who would do it outside of the trial. So for those who work in clinical trials or does clinical research, that's a huge problem with a trial, right? If you're accessing the intervention outside of a study, that can lead to multiple issues in terms of how we think about the study, generalizability and how we can ultimately think about the equitable nature of research consortiums and networks. The patient lived in Florida, lived in Jacksonville, drove six hours multiple times throughout the pregnancy to get serial amni infusions outside of the trial. She ultimately had a pre-labor rupture of membranes at 34 weeks, so pre-term pre-labor rupture of membranes. That confers multiple risks. So infection, bleeding, preterm delivery, stillbirth, cord prolapse, it's not a great thing. And at 34 weeks the recommendation would be to deliver, not to wait or to watch the pregnancy. She got on a flight from Jacksonville to Stanford, not recommended by an obstetrician, right? I would not recommend that my patients get on a flight to travel. But went to Stanford ostensibly given the history with Abigail Butler and the good outcome that occurred with her child. Delivered at Stanford, that baby had to undergo RRT for many weeks, eventually was discharged to care. What eventually they ended up going home back to Florida. However, had to go to Atlanta for continued RRT. Over the course of, until she was about 30 months old when her mom was found to be a match for her kidney. And then there underwent a successful transplantation and that's what made national news. So you can imagine there's multiple ways to think about this issue, right? Both in terms of healthcare resource utilization, personal economics, you know, how we think about accessing resources. And importantly, and the thing that's not mentioned here is how this patient was counseled, right? We have an experimental therapy. We have the option for abortion. And we have the option for expected management. Nowhere in these stories do we hear about, well, what was offered? How did the patient understand what was going on? It's simply described as well, I fought and I won. Which again is a common narrative we think about cancer when we think about other disease processes in medicine, but nevertheless one that has a particular political and social implication. I wanna turn to a separate story for an individual also living in Florida around the same time period. So this is the story of Deborah and Milo. This was cut very much in the news. It was in the Washington Post. There was a small series about this family earlier in 2023. So this is a picture from the last news article for this family. And this is a picture of Deborah, her partner, and then their son, Kayden, who is quoted saying, can I see my brother? Can I go see my brother? Kayden sometimes says. So this is a quote that comes from one of the news articles, so the state's ban on abortion after 15 weeks, this is post-op's, has an exception for fatal fetal abnormalities. But as long as their baby's heart kept beating, the doorverts, which were the family here, say, doctors would not honor their request to terminate the pregnancy. The doctors would not say how they reached their decision, but the new law carries severe penalties, including prison time for medical practitioners who run afoul of it. The hospital system declined to discuss the case. Instead, the doorverts would have to wait for labor to be induced at 37 weeks. So the second quote, which I think is also important to remember, comes from what happens after delivery. So the long and short is that the baby lived for about an hour and a half and then passed away. Rojelle, who's one of the grandfathers, lingered at the funeral home after others left, staying at the urn that contained his 16th grandchild's ashes and trying to reconcile his own misgivings about elective abortion. We can have a long discussion about that phrase elective. With the months of suffering, he watched his daughter and his family endure. Now he was haunted by the sound of Milo gasping for air on the side of his body, struggling to ward off a death that had been inevitable for three long months. To me, it's pure torture, Rojelle said. The law has created torture. This is the timeline events for Deborah, slightly different. In November of 2022, so this is like five months after Dobbs' fooling came down, Deborah was diagnosed with bilateral renal agenesis at 23 weeks and zero days. She was seen by an MFM and was offered an abortion at 24 weeks. She was unable to access abortion services due to Florida law and multiple institutional barriers. She was unable to travel out of state and multiple news articles is described as while there was caregiver issues, she had a child to take care of, economic issues of being able to afford getting abortion care out of state. So she worked with neonatal palliative care specialists throughout the pregnancy and ultimately underwent an induction of labor at 37 weeks. Her baby passed away after about an hour and a half, like I mentioned before. After delivery though, the family was having multiple issues with grief, self-reported stress, depressive symptoms and anxiety. Importantly, and something that the Washington Post described as opposed to the USA Today article, they discussed the economic costs. So with delivery and funeral care, this cost about $12,000 for medical costs, $7,000 for funeral services and $500 bear minimum for mementos. So how do we connect these two cases? They're both linked by a congenital anomaly diagnosis and for an MFM, we say, okay, there are two BRA patients we see, but there's more, right? We see on one and one lens, this question of power, perseverance and faith. On the other side, we see the torture of an anti-abortion ban. In both situations, the struggle was present for the pregnant individual, but they were felt in different ways. The struggle to access a experimental form of intervention outside of a trial. On the other side, struggle to access an ultimately unable to access abortion care services. Both decisions were really focused on this concept of parenting, this concept of disability of suffering, you hear that term again and again, but you see multiple things that play economics, state legislation, national research agendas, religion, social familial responsibilities, they all structure the type of care that was sought, how people engage in healthcare services and ultimately the outcomes in these circumstances. And I'm not saying one is right or wrong, I'm just saying that in this circumstance, there's a unique pattern that we're seeing that puts the nexus of the problem squarely within maternal fetal medicine, abortion care, so complex family planning and this nebulous world of maternal fetal intervention where maternal fetal medicine folks, pediatric surgeons, pediatric subspecialists all play this very interesting role. So how do we go about analyzing this? How do we think about this? And as an anthropologist, I always am like, well, where's the social theory? How do we bring theory to bear on this? And what are the limitations of the theory that we have? So I work mostly with Foucault's theory, mostly because a lot of folks who work in the anthropology of reproduction and sociology of reproduction tend to use his perspective to garner a better sense of how we think about reproductive health at large. So for folks in the room who are unfamiliar with Foucault, we're gonna give a 30-second overview of how we think about his concept of bio power. So his argument is that there was a turn in the way we think about sovereign rule and government functioning starting in the 17th and 18th centuries. And again, very much focused on France and there's healthy critique of like how this plays out in the rest of the world, but his argument really focuses on this bipolar view of politics. There's what's called anatomy politics, which is really focused on the individual themselves. This is thinking about the concept of the body as a machine. It needs to be disciplined. It needs to be functioning in a appropriate way. The classic example that people will use is to say, well, diet, exercise, taking medications, this idea of self-regulation to produce a better body. That is one aspect. The other aspect is this concept of biopolitics, which is thinking about the body, not just as an individual, but the body as representative of a species or a population and how the demarcation occurs for a population in and of itself is very heavily discussed in terms of racialization, creating a population of interest and other populations and what that does in terms of politics, in terms of questions of genocide, in terms of questions of harm towards other groups. But the idea that the government is particularly interested in monitoring and intervening on biological processes at the level of the individual, but felt through larger population trends. So this has to do with basic actuarial science, right? Birth, death, reproduction, morbidity, why we even have departments of public health that measure these things, why we as clinicians talk about population level risks with public health interventions like vaccinations. This is a form for Foucault of biopolitics. They're anchored together through this concept of biopower. So it ultimately rests on this concept, which this comes from a direct quote from Foucault is the power to foster life or disallow it to the point of death. So this is an interesting framework that he came up with. It's been used time and again within multiple spaces within medical anthropology and sociology to describe mostly issues related to public health care when we think about infectious diseases or the like. Folks that work in the anthropology of reproduction have used it to really think about key questions related to who gets to reproduce. Why is reproduction supported or not supported among certain groups? What practices, institutions and ways of existing are reproduced? So it's not just biological bodies that are reproduced. There's certain ways of living, certain things that we do that get reproduced again and again, why does that happen? So reproduction is a social phenomenon, not just a biological one. And importantly, under what conditions, economic, political, racialized, what have you, how are those optimized or not optimized among certain groups for biological reproduction? And importantly, Foucault, because Foucault has talked about everything, he has particular interests in governmental functioning. Folks have also taken a look at how state-based practices, both monitor and control methods of reproduction. And much of this has been focused on contraception and abortion, particularly Latin America and in Eastern Europe. So one of the ways that Foucault's sort of iteration and focus on reproduction has kind of taken off, especially in terms of novel reproductive technologies, has really been through this concept of selective reproduction, which is the idea that reproductive technologies can be used to avoid the birth of, quote, certain kinds of children. This comes directly from Laura Louise Heinlein's, Heisen's work in Denmark related to prenatal genetic screening and what they describe as, quote, selective abortion in the setting of a down syndrome and other genetic abnormalities. People traditionally think about this in terms of IVF, amniocentesis, chorionic villus sampling, these sort of prenatal genetic testing technologies and even ultrasound that will pick up severe anomalies and then folks will decide, okay, do I want to continue a pregnancy or do I want to have an abortion? What's missing, and what I argue is missing, especially with these other circumstances is that in all of this, we don't really see the role, we really don't have this discussion of the role of the fetus. It's an object that's being surveilled clearly, even in the US, right? This is an object that is of state concern. So state concerns so much that many states say you can't have an abortion because of XYZ issue and important to remember that the Dobbs versus Jackson women's helped the initial critique of abortion from that group came down to the fact that, well, abortion should be immoral after 15 weeks because it causes fetal pain. A topic we'll talk about very much later. So the idea that the state has a vested interest in this object we call the fetus that can only really be detected with ultrasound and with some biochemical testing. How do we think about the social bonds that are created from the fetus? And again, the idea that with all of what I'm saying, the idea that the fetus is disembodied from the pregnant individual, that the fetus is doing all these things, right? It has governments that are interested in it. It has agencies that are trying to work on it. It has biomedical folks that are intervening in different ways with or without the pregnant individual in the picture. And even if they're in the picture, how that framework gets brought into view is very, very different, depending on what position you take. And what I argue, I think is the most important is how do we characterize and understand the actions, motivations and goals of pregnant people carrying fetuses affected with anomalies at high risk of morbidity and mortality? This is like the undercurrent of every MFM, but importantly in this circumstance, how can we use these stories, social theory to bear, especially as a main way of accessing abortion care is rendered almost intangible to a good chunk of the population. I argue that I think it's worth taking a look at affect. And affect is hot and sexy in social theory right now, but I think it is a very interesting way to think about these very key questions that are core to human experience. And there's a very, I put up a very sort of philosophical way of thinking about affect that mostly will make people bore their eyes out. But nevertheless, it is an idea that there is this thing called affect. It's pre-linguistic, it's pre-social. It becomes an emotion once it's uttered, once it embodies itself into an individual. But the concept of affect is that it can move. It goes between people, it goes between people and signs. And it can also do things. It can do things that can be seen to be irrational. It can do things that can potentially be characterized as going against what is considered widely considered to be sort of policy, historical policy, historical practices. And so folks have talked about this concept in relationship to economy. How we think about the exchange and what is gained, what is lost. And this comes directly from Mara Bookbinders, Tiffan Timmerman, who are Mara's anthropologist, Tiffan Timmerman's as a sociologist. Their book, Saving Babies is worth picking up because it ends up looking particularly at the role of newborn genetics screening here in the United States. And they use affective economies in a particular way because that's a long lineage otherwise. But the idea that they harken to is that this is a system of exchange in which people enact and elicit emotional responses for social and political ends, such that affect comes to serve as its own currency and yield its own profit and costs. So the idea is that kind of commonly, we kind of get a sense, right? Emotional responses can cause things to occur, but the emotional response in and of itself as an end because it becomes the nitis for how we think about social economic political resource utilization. Linking this to biopolitics, folks have looked at this in different frames and really thought about how affect becomes an object to be managed. It becomes of governmental interest to manage affect and emotion. People have looked at this in a variety of different ways in terms of how we think about everything from, there's a great book called The Management of Hate. When we, for an individual who was studying how right wing hate is managed by the German government in Berlin and how we think about that. We also think about affective management and relationship to humanitarian aid and global health. Why certain groups, certain disease processes are targets of governmental policy. Why the Gates Foundation cares so much about ex-disease, but not why. What is the affective contour related to that and what is the population of interest and how is that molded and created through who we think is worthy of humanitarian intervention? So you can see here, it's working in different spaces, but it's not working within reproductive health. It has yet to really been pushed in that direction outside of maybe one or two scholars that are looking at this in terms of pedagogy. And I turn you to Kelly Underman and her recent book, Feeling Medicine, that looks at this related to how we train medical students to do a pelvic exam, for example. But ultimately this brings us down to this key question. How do we think about biopolitics as a theory? How do we think about affect as a theory in order to understand and ask novel research questions about people like Andy and Deborah, who face a congenital anomaly, had two wildly different experiences that all interacted with core sort of topics that have been analyzed by social scientists over the last four years. So this framework is kind of, I think what people tend to think about when we think about a social ecological model or if we use like structural violence or critical medical anthropology, the idea that there is this macro structure, and again, very Marxian, a macro structure that's creating policies, doing things as different thoughts, feelings that then trickles down to the individual and then it leads to XYZ outcome. So everything from the theoretical legal system, the legislative system, economics, it filters through or interacts with the biomedical system and then impacts the pregnant individuals we saw with Andy and Emmy. Scholars within critical medical anthropology, sociology, and science and technology studies have said, well, maybe this isn't the greatest way to take a look at it. We know that people kind of have impacts upstream. They go backwards. So activists who, for example, were living with HIV, who were actively critiquing how clinical trials were done in the 80s and 90s, and subsequently were able to push forward research on antiretrovirals is a classic example. Steve Epstein's work, he's now a Northwestern, really demonstrates this in full effect. But that's not really what's going on here, right? There's something more that has to do not just with resisting modes of power or speaking back to modes of power. It is this idea that there's unique situations in which affect is being drawn on, experiences are being drawn on to move people back and forth, policies back and forth, activities back and forth in a way that doesn't really attend to hierarchy in the same way, right? It allows us to think about troubling different relationships. It really also allows us to really think about different actors and different networks of action in very, very unique ways. And it allows us to also really keep in mind what are the profits and the costs to use that quote from a bookbinder in Timberman's, what profits and costs are yielded when misinformation and information in general around congenital anomalies, maternal fetal intervention, prenatal diagnosis, parenting disability, what have you are used and what affective contours they might have as these things begin to enter discourse. And I use this as kind of a break-off point to think about not just bilateral renal genesis, but also the wider field of maternal fetal intervention. And so some of this comes from some of the work I've been doing with groups here at University of Chicago with the Society for Maternal Fetal Medicine and the North American Fetal Therapy Network. So this comes from a juridical legal analysis that we performed at the end of last year when we looked at major public repositories for legislation about the state and national level as well as congressional hearings related to abortion and maternal fetal surgery. And so these are a couple of take-home points that we found from our analysis as it relates to maternal fetal surgery and abortion. And much of this harkens back to kind of what I was talking about at the beginning of the talk that really has to do with the state's interests in the fetus as an object and really driven by this concept of fetal pain, which is a key theoretical concept, one that can't really ever really be proved, but nevertheless has sort of like garnered a lot of discussion in the literature, a lot of discussion among the late public, the idea that abortion providers produce fetal pain, maternal fetal surgery addresses fetal pain. Therefore, fetal pain suggests the existence of fetal personhood. This is not a terribly logical framework, but it is one that is provided again and again and again within the discussion related to maternal fetal surgery and abortion. And it helps to sort of shed a light in terms of how we think about a governmental perspective and interest as it relates to the fetus and how this plays out in terms of discussions around fetal intervention, discussions of abortion and ultimately where we think the affective contours might lie in relationship to all of these things at a government level going all the way down to the individual. So this is a quote from Kathy McMorris Rogers. She's a representative, a Republican representative from Washington and this came from the Women's Health Protection Act of 2022 congressional hearing discussion. So you can see highlighted that she mentions that doctors are performing prenatal surgeries and treatments to save lives. She was discussing something with the doctor and says, this doctor was telling me they can form a prenatal surgery on 20 different organs. That wasn't possible in 1973 when Roe v. Wade was decided. It's important to remember that that phrase, number one is inaccurate, you can't do it on 20 organs, at best, you can do it on five. Number two, she also mentions even further up, which I think is really important that all of this is situated related to a quote abortion on demand discussion. So she says, the abortion on demand bill, the bill before us today though is extreme. It is abortion for any reason at any stage of the pregnancy until birth. It is not the will of the American people. She also describes her own positionality. I'm the mom of three young kids and anyone who's given birth knows that to be able because of this technology to see the baby develop day by day is just amazing. So you can see using different technologies, maternal fetal surgery, seeing the baby develop, ostensibly referring to ultrasound, discussion with medical professionals that we can do prenatal intervention on 20 different organs, renders the concept of abortion as somehow in question that it shouldn't be done because all these other great things can be done. And because of technological advances that didn't exist before Roe, that couldn't have been on the horizon for Roe, abortion somehow is this antiquated thing. So the other aspects, which I think I wanna touch on very, very briefly, also have to do with the affective contours, not just related to linguistic utterances, but also pictures. And I'm seeing Dr. Callender in the audience because he's written about this time and again along with Dr. Korr, but this concept of displaying the fetus and ultrasound, when we think about anti-abortion protests, literal pictures of pathologic specimens of the fetus, they are used and deployed for particular affective work. In-utero repairs and in-utero surgeries also use much to the same extent. So I bring this up from a randomized trial from the New England Journal now, like almost 15 years old, that randomized individuals to pre versus postnatal repair of open spina bifida. So you can see here essentially the way that this surgery worked is a midline vertical incision was performed on the pregnant individual. Uterus was exteriorized and incision was made on the uterus. Fetus was essentially delivered and Milo Meninga-Seal demonstrated here was repaired. Fetus was put back in, amniotic fluid was replaced, uterus was closed, pregnant individuals abdomen was closed. The idea was that this would improve long-term neonatal outcomes and data does suggest that it does up to at least 10 years of life. However, it's a very morbid procedure as you can imagine. But it's also one that has captured the public eye over the last 20 years in very unique ways as it relates to abortion, particularly around this picture and I apologize for the graphic nature of this picture. This picture was published in the Lancet, or the Lancet if I remember correctly and then was reproduced in a host of other articles back in the late 90s when this was being pioneered over at Vanderbilt and at Children's Hospital in Philadelphia. People affectionately described this picture as a hand of hope and particularly anti-abortion, individuals active in the anti-abortion sort of paradigm. The idea here is this is during an in utero repair and you can see the historotomy, you can see the uterus, the surgeon's hand and what appears to be, and again, I say appears to be the fetal hand grasping the finger of the surgeon. It's important to remember during these procedures the fetus is anesthetized, the mother is under general anesthesia. So the fetus is not moving, it cannot actually like do movements because of the anesthetic on board. Fetuses are also given a paralytic as well. So any sort of neural activity is degraded during this time period to allow the surgeons to do their work. It's important to remember that because of what is seen versus what is actually happening in that narrative, it's disconnected. So this picture is used time and again, especially as we're talking about abortion and maternal fetal surgery. And I know we're running low on time, but I don't know if we're able to, do we have speakers? We could play a video or not? We can try. I don't know if it'll work. My video is not working. I apologize, but I think it's probably not linked out. But essentially this comes from a congressional hearing now about 15 months old, but right around the same time period as the previous statement that I put up from a representative from Washington, but basically the setup is a representative from the AMA is being questioned by members of Congress. And that picture is brought out to basically describe fetal personhood and saying, well, that's a baby. That's a child that's grasping the hand of a surgeon is abortion allowed because that's a child or that's a person. So the elision of fetal personhood through maternal fetal surgery rendering abortion as immoral or unnecessary or illegal or cruel is commonly used and is being used more and more, especially peridob and post-dobs. So folks have talked about this sort of on and off within the fetal therapy community. People have looked at how maternal fetal surgery and perinatal palliative care. So essentially providing comfort care to neonates that have a high risk of morbidity and mortality can be weaponized against access to abortion care. The idea that, well, because we have these things why do folks need an abortion? Which again, elides a lot of autonomy and choice and risk related to carrying a pregnancy in this circumstance. The idea that there are multiple linguistic and visual politics of quote, fetal life, which again, I use that in very big air quotes because this is a phrase that gets discussed time and again when it comes to anti-abortion rhetoric, but this concept of how we think about the visual and the linguistic and the affective, it allides into prohibiting access to comprehensive reproductive healthcare services. And so how we start to think about bringing all of these things together, right? Because we've covered a lot of ground. We talked about two very interesting cases from Florida. We talked about pathophysiology, bilateral renal agenesis. We talked about abortion, Foucault, myeloma nongassio, open repair, all these things. It's a bit of a mess. But how do we think about bringing these things together? And this is the way I kind of argue we should be starting to look at this because this problem is getting worse in the United States. And I use this phrase thinking about feeling that comes from the late Lauren Berlant who was here at University of Chicago for many, many years. This idea of how do we turn our attention as scholars in this space to affect? And how do we really think about how affect, like sympathy, deservingness, anger become mobilized and circulated in different spaces related to the medical and surgical management of congenital anomalies? How does this produce subjects like the fetus in need of protection or intervention? How does this also not produce subjects like the pregnant individual who is apparently not worthy of protection or intervention? What are the repercussions for individuals who don't play into this paradigm? As you can see, because prenatal surgery can be done, why have an abortion? So particular forms of subjectification or creation of subjects within the governmental space. What happens when people don't follow those rules? And what are the consequences? How does this devalue the lives and experiences of pregnancy-capable people? You saw that in the quote, faith, perseverance, and science saved Andy's baby. None of those things were used to describe how Deborah had to look for abortion care, how she was unable to access abortion care, how she had to give birth to a baby that died an hour and a half later knowing that that baby would die within the matter of hours after giving birth. What does this do in relationship to innovation and research in maternal fetal surgery? This does not mean to like bad mouth maternal fetal intervention. It's a cutting edge approach. We know that in certain circumstances with very rare anomalies, it can be beneficial. It's not without risk but it definitely has been shown to be beneficial. But what does this do when accessing maternal fetal surgery can be done outside of a trial? What does this do in terms of abortion politics? And importantly, what does this look like in terms of consent? If you're performing maternal fetal surgery trials in a state where you cannot access a standard of care approach to management of a congenital anomaly like abortion. And ultimately, what are the public health ramifications? Which again, we talked a little bit about with, by BRA, not just for the mom but also for the pregnant individual or for the neonate, sorry, of this affective economy. What is being done? And what are the ultimate ramifications? I wish I had the answers to all this but this is where I'm hoping my research is gonna go in the next 10 years. But I know that we went over a lot of ground and we're almost at an hour but I wanted to open it up for questions or comments. And I wanted to thank you guys for your attention. Yeah, so for everyone on the Zoom, Dr. Callender was asking, is this research being pursued in states where there is anti-abortion legislation? And so, and just to clarify, you mean for maternal fetal surgery research? Yeah, so it's a great question. So there, I'll bring up a good example. So Baylor in Houston, Texas, which is a known conservative institution in and of itself is performing a phase one randomized study or a phase one study, sorry, it's not randomized of in utero repair of gastro-schesis. So gastro-schesis is where the anterior abdominal wall is not formed properly and the intra-abdominal contents herniate out. The problem is is that gastro-schesis essentially because of all of the herniation of the gut into the amniotic sec, the amniotic sec can actually damage the intestines. If left untreated, it can lead to short gut syndrome meaning after delivery, the neonate would need to have multiple, a significant amount of gut removed and that can lead to obviously long-term morbidity and eventually mortality. It can also be associated with stalberth because of acidemia related to the death of the gut. So they have looked at looking at repair of gastro-schesis in utero. One can imagine that A, meeting that inclusion criteria is quite difficult because they have very stringent criteria set by the FDA about who is eligible for this study. But B, it's important to remember that these, because it's only being done at a single site, they have to get referred in. And it is a little interesting because when you look at the consent, and again, it's not about the consent at the site, but when you look at the consent on like clinical trials or when you sit in on webinars, when they're trying to recruit, the statement from some of the PIs will be that, well, there should be psychosocial evaluation prior to the patient coming, but there's no discussion in terms of, well, what happens if they come to Baylor and they want a termination? Is it discussed? Or let's say they undergo this repair, which I should be clear is done fetoscopically. So they basically will usually make an incision, deliver the uterus and then put ports in just like a laparoscopic approach. That's associated with rupture of membranes about 20% of the time, could be even up to 40%. What happens if they break their bag of water at a pre-viable gestation? None of that's really discussed or at least openly discussed in publicly available documents. So it brings up a lot of questions that you're kind of getting at, which is not just the consent process, but what happens when, like if there's a problem in a phase one study. And myself and one of my colleagues, Jessica Fry over at Lurie Children's wrote a response to this in AGOB now like two years ago because the NICHD had put out a little bit of wording around the future of fetotherapy trials and how that needs to look from Deanna Bianchi and her group and they don't mention one subortion. So I think part of this is a long standing bias within folks working in MFM and folks working in fetal therapy that when we kind of go back to that, where's that framework I had? And that's kind of why I kind of went down this, there it is. So this framework, the idea that, okay, when we got all the way to here of maternal fetal surgery, the people who want this, they would have gotten an abortion before they got here. That is a long standing critique and there's no data suggesting that that is true. So we have a couple of papers coming out. We have two analyses coming up in a couple of weeks, but one that was presented last year that demonstrates in the setting of a congenital anomaly that is amenable to maternal fetal intervention. So like myelomeningocial. Here in Illinois, if someone comes in and goes to a fetal care center, one out of four of individuals who come in for counseling will ultimately decide to have a termination. That's a pretty high number, right? But that's only one site in an abortion open state. We have no idea about what happens in other states. Sorry, that's a long-winded answer, but it's one that's very, very complicated to get through. Yeah. So Shesh, we had two or three last weeks with one of the some recent slides, but tough issues. You would have one slide here to talk which was basically a rather solid one slide, but here's the one slide with a few points of more direct guidance to help them be bound with an ethical result. What were those points on your guidance? Yeah, so it's a great question. So the question from Dr. Chen was really around, can we create a quick summary in terms of thinking about what are the core ethical questions that we really need to consider in this circumstance? And I think one of the questions Dr. Kalander kind of got at is what are the ethical considerations of consent in a fetal therapy trial post-dobs writ large? The second is what are the ethical considerations related to accessing abortion care related to overall fetal care, right? Outside of a trial, go to a fetal care center in Texas or in Georgia. What are the ethical clinical obligations of individuals at those sites to talk about abortion care or to provide referrals to abortion care or to access community funds to get patients to abortion care? Is there an ethical imperative? And I think the third and the biggest one is how do we think about, it's not really like the ethics, but how do we think about individuals sort of trajectory through diagnosis of a congenital anomaly? And importantly, what happens if they, I guess the phrase we use is change course, right? And we see this all the time. People will come in, they get an anomaly, they get diagnosed with an anomaly. They say, well, I want XYZ done, time passes, XYZ was done. And then they decide, hey, I wanna do something else. How do we think about that? Because sometimes that doesn't happen in a sort of very straightforward way that, oh, they get diagnosed in a pre-viable state, we wait a couple of weeks, they're still pre-viable, great, all options are on the table. But let's say they get diagnosed in a pre-viable state, interventions are done, adverse outcome happens, they're now wanting to proceed with a termination, but they're in an area where there's limited access, no access, what are the ethical obligations in that circumstance to facilitate care, provide care? Other questions, other concerns? Okay, thank you all. Thanks very much, Dr. Premkumar. And so, if the fells can come down, we'll have a half an hour more with the, she should.