Faculty Seminar - Carter Snead on Public Bioethics

hi friends thanks so much for joining us tonight as we begin this new academic initiative through the soren fellows program rooted in the scholarly ethos of the de nicolas center these monthly seminars facilitated by the most exceptional faculty at notre dame and beyond are intended to engage and inform you our soaring fellows about enduring and contemporary topics surrounding and informed by the catholic moral and intellectual tradition the inspiration for this event is twofold we anticipate that your educational experience at notre dame st mary's college or holy cross college will be rigorous and nourishing no matter if you are an undergraduate graduate or professional student however we believe that there are some things so important to an authentically catholic educational experience that every student no matter their course of study or professional goals should not only be exposed to them but also have some familiarity and understanding of them be it with respect to public bioethics education policy or thomas aquinas at the same time and in the interdisciplinary spirit of the center we recognize that the requirements of your degree program may preclude you from dedicating a semester to the study of these enduring topics or contemporary issues through a class or even several classes leveraging the center's robust network of excellent faculty on campus and beyond these faculty seminars are formulated in an effort to allow you the opportunity to build both an introductory familiarity with as well as to chart a course forward with additional resources for further engagement with the topic again like most of our programming this semester these seminars would best take place in person in a classroom in dbart oshag or the law school which we plan on moving forward once our shared life together regains some normalcy but in the interim we will host these online which will allow you to access and revisit this content at your own leisure whether in your dorm room or on a walk around campus the format of these conversations will be as follows our guest will lecture for about 30 minutes providing a high level but substantive treatment of the seminars topic then we'll be joined live via zoom by our guest so he or she can field questions from soren fellows that arose out of the seminar and that will run for about 20 minutes or so with that said it's my pleasure to briefly introduce our guest this evening professor carter sneed is the director of the nikola center for ethics and culture professor of law and concurrent professor of political science at the university of notre dame he is one of the world's leading experts on public bioethics the governance of science medicine and biotechnology in the name of ethical goods he is the author of what it means to be human the case for the body in public bioethics to be published this october by harvard university press additionally he has written more than 50 journal articles book chapters essays and commentaries in publications such as the new york university law review the harvard law review forum the yale journal of health policy law and ethics the journal of medicine and philosophy and political science quarterly he is also the editor of two book series for the university of notre dame press catholic ideas for a secular world and notre dame studies in bioethics and medical ethics in addition to his scholarship in teaching professor snead has provided advice on the legal and public policy dimensions of bioethical questions to officials in all three branches of the us government and in several intergovernmental fora prior to joining the law faculty at notre dame professor snead served as general counsel to the president's council on bioethics chaired by dr leon cass he has testified in the u.s house of representatives the texas state house and senate and regularly serves as an expert witness on bioethical matters before federal courts professor sneed also led the u.s government delegation to unesco and served as its chief negotiator for the universal declaration on bioethics and human rights served as the u.s government's permanent observer to the council of europe's steering committee on bioethics and in 2008 was appointed by the director general of unesco to a four-year term on the international bioethics committee he is also a member of the pontifical academy for life the principal bioethics advisory body to pope francis and is an elected fellow of the hastings center the oldest independent bioethics research institute in the world as a reminder professor steed will join us for a live q a immediately following his lecture you are encouraged to submit your questions through the chat function throughout the lecture and our staff will do our best to get to them during the live q a so stick around hi everybody uh so excited to be participating in the faculty seminars it's an amazing idea that our our wonderful leader uh pete lapsi came up with and uh being a law professor a lot of you undergrads unless you come to notre dame law school which i encourage you to do won't ever have an opportunity to study with me um i'm a a teacher and a researcher and engaged in public service in the domain of public bioethics public bioethics is defined as the governance of science medicine and biotechnology in the name of ethical goods so whereas bioethics is just a field of scholarly inquiry with abstract questions about um you know what we owe to each other in the context of the delivery of medical care or research involving human subjects or other issues involving the development of biotechnologies that raise pressing or vexing normative questions public bioethics is where those questions enter into the the governing process that is to say uh through the work of the legislative branches of government through the work of the executive branches of government both the state and federal level as well as uh in the judiciary both at the state and federal level including the u.s supreme court the issue of abortion for example the law of abortion is a kind of pristine example of american public bioethics i've just finished a book called what it means to be human the case for the body in public bioethics which i highly recommend to you it'll be available on october 13th being published by harvard university press and it's it's written at a level that would be intelligible and i hope interesting to undergraduates uh lay people uh you don't have to be an expert in science or medicine or law to understand the arguments of the book and i think one useful way to kind of give you guys a primer an introduction on public bioethics is to talk a little bit about the book because i think what the book does and or at least what it tries to do is to lay the groundwork for understanding the richest way to understand public bioethical questions and it offers a kind of substantive critique of mistakes important mistakes in public bioethics relating especially to the vital conflicts of abortion assisted reproduction and end-of-life decision-making including not just the termination of life-sustaining measures but also including assisted suicide and euthanasia okay so i'm going to describe the book a little bit and i think that's a useful way to give give you guys a a basic understanding of what public bioethics is how to think about it how to sort of enter into the questions and also what the unique contributions of the catholic moral and intellectual tradition are to this particular domain and i think they're very important these particular contributions but not only are they valuable for us catholics but they're also valuable for anybody who can understand and be moved and persuaded by the principles that our church has affirmed for millennia but again you need not profess our faith to understand and be persuaded by the arguments and to embrace the public policies and laws that follow from those principles okay so i've already defined for you what public bioethics is it's the governance underlying governance of science medicine and bio and biotechnology in the name of ethical goods now to a person who hasn't thought much about it it might seem to you odd that the law would be so deeply intertwined with normative questions you frequently hear people say things like oh law and morality should be kept separate you know keep your morality off my laws or or whatever and um and if you think for a second if you sort of enter deeply into the question of what law is you realize pretty quickly that that that dichotomy between law and morality is impossible to sustain okay that's not to say that every moral question needs to be regulated by the law but rather what it's to say that every single law that exists or is considered aims at a particular end or purpose that is deeply and and intrinsically normative right that is every law aims at a particular good to be pursued or a particular harm to be avoided and those goods can be formulated at different levels of abstraction you can say uh this the law aims to promote economic efficiency or the law aims to promote safety or the law aims to promote uh health or something along those lines but then you want to drill even more deeply still because you to understand the law most richly you have to understand the even deeper principles of justice and equality and freedom that underwrite and undergird these normative aims of the law okay so there is no law that exists that is not arbitrary and capricious that is not rooted in a very particular normative set of commitments whether they be superficial policy commitments or you drill down a level deeper still and you're now in the realm of conceptions of justice and equality and so forth you can do that and i think and the argument we make at notre dame law school and elsewhere is the richest understanding of the law is to drill down into that normative structure so you can ask hard questions about whether or not the doctrines of the law or the mechanisms of the law are well designed to advance those goals right that's a question of fit or you can ask a question about whether or not the underlying goals themselves are wise or good or humane right now in the book i make the argument that the richest and best way into questions of public bioethics is precisely in this mode right you don't just ask what is the law of abortion in the united states you and in fact you don't even just ask what is the what is what's the normative structure of the law of abortion what is its principle of justice what is the principle of equality that it assumes um in fact the argument that i make and this is the first claim of the book it's a methodological claim is that the richest way to understand any law or policy but especially rules and laws and policies relating to public bioethics is through the question of what does the law assume who does the law assume a person is and what constitutes human flourishing another way to say that is it's an anthropological and sort of original sense not in the modern sense in the original sense of this of an account of what it means to be a human being you have to ask what does this law assume a human being is and what constitutes his or her flourishing okay and at this point someone might say whoa whoa whoa whoa people strongly disagree about that how can we in a pluralistic country how can we allow the law to embrace a particular understanding of human identity and human flourishing when that's a fundamental issue about which people strongly disagree well the answer to that question is you can't avoid it you cannot avoid the question a lot of very famous and important philosophers have tried to articulate neutral principles views from nowhere uh that don't relate to or don't assume particular normative views but they've all failed they've all failed and and the only the extent to which they succeed is the extent to which they mask or hide the premises that actually do the hard work of animating the doctrines and the policies that that grow out of them okay so for example um uh well let me just say one last thing the and this is important to understand about the law all law right all law is not just normative but all law aims to promote or to protect the flourishing of persons that's what law is for that's what law does that's a pretty non-controversial definition of what the law is but an astute listener will realize that if that's true if what law does is it aims to promote the flourishing or protection of of persons then you have to have an ex-ante that is a prior understanding even if you don't say what it is of what a person is and what constitutes human flourishing otherwise we would never know if the law is successful you have to know what a person is and what his or her flourishing consists in if you can judge in order to judge whether or not the law advances those goods okay and so from that insight i argue in the book that in the field of public bioethics the field of public bioethics which is really about not just um you know not just about human subjects protections and dying and organ transplants and end-of-life decision-making and abortion and embryo research and cloning and and you know everything else of course it's about those things but even more deeply it's about who are we and and what constitutes our flourishing right and so you got to dig deep to that level of analysis to answer those questions and so that's the sort of first methodological claim that an anthropological point of entry is the richest and most explanatory point of entry uh into the law of public bioethics even more so than any other branch of law even though other branches of law would also benefit from that kind of analysis okay now the substantive claim of the book is that when you do that when you take a look through the anthropological lens at the three vital conflicts of american public bioethics the most sort of vexing and and well-known conflicts in the area of public bioethics and i take the issues of abortion i take the issues of assisted reproduction involving in vitro fertilization surrogacy and all the related um adjuncts to that including genetic selection of for sex or the elimination of people with disfavored traits whether they relate to uh illness or health or whether they just relate to things like preferred traits like eye color or height or skin color or or um or intelligence right um in the third area so the first area is abortion second areas is history production the third area is end-of-life decision-making which includes the law and policy relating to the the um the refusal or discontinuance of life-sustaining measures assisted suicide and euthanasia okay and my argument is when you look when you look inductively meaning when you look at the law as it is and unpack it in american law you take the law of abortion you take the law of a history production you take the law of end of life decision making and you kind of unpack it and dig down into the into the into the normative foundations what you find is a vision of the person that is deeply flattened and inconsistent with the lived realities of human life okay more specifically if you look at the question of what vision of the person is assumed by the american law of abortion assistance reproduction and end of life decision making is a vision of the person that tracks what um social scientist robert bella and catholic philosopher charles taylor and catholic philosopher alistair mcintyre and others have identified as expressive individualism okay now expressive individualism is an account of the person that views human beings through the lens of their will through the lens of their mind okay um and uh and it assumes that human beings should be solely defined by virtue of their capacity to choose life courses based on the interrogation of the depths of their inner self okay it views the person as an isolated unencumbered atomized individual self it views persons as defined by their will and everything else nature other people our bodies are instrumental they're instrumental and they're not essential to who or what we are they are simply instruments to pursue the the ends and purposes that we ourselves construct internally through the exercise of our will and therefore people are chose are defined by their capacity to choose and make decisions um uh and again human flourishing is defined as the pursuit of the projects of your own construction and it comes with an imperative to live out as charles taylor says your own originality to to find your authentic originality irrespective of the norms or mores of your community irrespective of the relationships you have with other people or the traditions in which you find yourself to find your authentic originality and to express it and to follow it okay and sometimes that can be oftentimes that can be transgressive transgressive of the norms of the community now um the the view again and by the way and you read the book but this vision is called vision of expressivism uh is really interesting and taylor gives a great genealogy of intellectual genealogy dating back to the romantic literary movements in which really this idea of authenticity and originality and the unencumbered self uh finding it's defining its own transgressive truths grows out of uh well originally grows out of rousseau but then it really manifests itself in the strongest form in the romantic literary movements in which uh poets and authors decided to rebel against what they took to be the strictures and confinements of of the traditions in which they found themselves and in america in particular this really took off uh with walt whitman and emerson and others uh pursuing pursuing their uh their goals and in fact the most the sort of purest version of this it can be found in in milton's paradise lost in which uh satan addresses the army of fallen angels and says and and is addressing them and saying we don't remember when we were created you say that we're creatures that owe obedience to god when we have no recollection of that we have no understanding of ourselves outside of who we are now cognitive beings at the height of their powers pursuing their own goods as they see them and it is it's a again it's a very very um powerful and purified version of expressive individualism expressed in milton and you can see this in a lot of different literary uh literary expressions in mozart's don giovanni you can see it you can see it in in gerta in faust you can see it there's a lot of different really interesting iterations of it and but then it enters in the 20th century into normal normal human parlance and then as bella points out and mcintyre points out with the advent of advances in psychotherapy new corporate forms people started to define their own flourishing in the exact same terms and in the 1960s the the the human sexuality and sexual expression became a key mode of expressivism uh and and you can see how that immediately pivots and turns into the issues that i'm talking about with abortion assistance reproduction and end of life decision making okay but one of the things about expressive individualism is it's also uh to use a technical term anti-teleological meaning it rejects the notion that any of the external givens that we encounter in the in the natural world are normative or are useful guide to negotiate the meaning of our experience only the unique and original inner voice that we have ourselves is definitive of what we should do how we should act how we should configure our lives okay uh and one thing that follows directly from this expressive individualism is that we have no unchosen obligations or constitutive attachments okay you do not you're not bound to do anything or to hold back from doing anything unless you have previously agreed to do so in a kind of contractual form in a contractual sense right and you can see that this really how the how expressive individualism privileges cognition right cognition intention will you can my job i'm only bound by those things that i freely agree to do okay there's no set of people who have claims on me absent my prior agreement or my willingness to do it there's nobody that i owe anything to uh and um and personal relationships are understood as instrumental and transactional uh people encounter each other as isolated wills sometimes they come together in collaboration to pursue mutually beneficial ends but most of the time they encounter each other's adversaries that have to overcome one another the world of expressive individualism is a world of strife and you can see that uh fast fast forwarding to the question of ex of public bioethics the legal tools that the law authorizes and ratifies are the tools that are appropriate to a world of strife in the context of abortion it's the right to destroy an unborn child uh to liberate yourself from the burdens of an unborn child that you don't want in the world of assisted reproduction it's it's the the freedom to create a baby by any means necessary by any means that you choose to pursue to realize the project of the designs of your will right in the end of life decision making context it's about expressing your your your authenticity and your agency by refusing or discontinuing life-sustaining measures or annihilating yourself either directly by yourself with a suicide or with the help of another person directly in the context of euthanasia okay the visions of ethical goods through the anthropological lens of expressive individualism autonomy is the highest good to which all others are subordinated self-determination is the most important thing that we can the most important norm that we can vindicate and injustice is constituted by constraints on those freedoms to pursue projects of your own choosing and the role of government since we're talking about government and public bioethics is to remove constraints public constraints private constraints maybe even natural constraints uh to provide the conditions for the assertion of the unencumbered individual self okay now why is this vision of the person badly suited for public bioethics the answer to that uh i think is uh we're we're benefited by reminding ourselves of something that aleister mcintyre said in his book dependent rational animals which i encourage you all to read he talks about different frames of thought being forgetful of the body okay the reason expressive individualism fails miserably and it fails the weakest and most vulnerable among us is because it doesn't take seriously our embodiment as beings okay we are not have but we are bodies okay human beings are bodies we encounter one another as bodies we experience ourselves as bodies living and dying bodies bodies that get sick bodies that desire procreation bodies that uh that become pregnant bodies that are uh that are fearful that enroll in clinical trials we are bodies we're a unique combination of body and mind okay we're an integrated being with body and mind we are not a ghost in the machine who we are is really up here and everything else is kind of an instrumental good to help us realize the goals of what's up here okay that is and that's a lived reality that we can all identify with and i think agree to no matter what our faith tradition is right it is the case that you are a body and when your body gets sick or when your body changes it affects everything right it affects your mind it affects your mood it affects your behavior it affects your abilities um and and it's inarguable and i think a fairly non-controversial proposition that we are bodies but the vision of expressive individualism is does not make sense of our body except as a tool it doesn't make our sense extensive our body as part of of us as as being us that we are in fact bodies not that we have bodies and some of the realities uh that come with embodiment are especially important to public bioethics namely the fact that we are vulnerable right because of our embodiment we are vulnerable especially at the weak stages of our life right when we're at the margins of life when we're born and when we're at the end of our lives we're especially vulnerable but everybody passes through periods of profound vulnerability and because of that dependence on others that's the other feature of embodiment is we're mutually dependent upon one another as well okay aleister mcintyre says that we all exist on a scale of disability and it's always the case that no matter who we are at some point in our life maybe if we're lucky it's just at the beginning and just at the end but it probably won't be the case that it's only those two points there are points in our life where we become profoundly dependent upon other people for our very survival but not just our survival also our self-understanding we have we define ourselves and measure ourselves you can't do it in a vacuum right you do it in conversation with others charles taylor calls us dialogical creatures we define ourselves in conversation with one another we're storytelling creatures as alistair mcintyre says we need a narrative to make sense of what we are and you can't have a narrative if you're an isolated atomized will um michael sandell says i exist in a history that i can neither summon nor command right alistair says i only i can only understand myself if i understand what and whose story i'm a part of okay and all of this entails and requires other people all of this i think flows from the fact of our embodiment and because of our embodiment we're also subject to natural limits right we're all going to die we are all finite um and so um any anthropology that assumes that i'm merely a disembodied will and that everything else is instrumental is going to miss this fact and in the context of public bioethics what you're missing is you're missing unchosen obligations to vulnerable other people how do you make sense of my own weakness my own dependence my own vulnerability if all i am is an atomized will but even worse how do i make sense of the claims made on me by the elderly by children born and unborn and by the disabled that makes no sense i am sad that only except only through a contractual lens would that make sense and the contractual lens is not sufficient to protect the weakest and most vulnerable among us in order to survive and flourish as an embodied being we have to have and practice a series of goods and virtues that that are appropriate for an embodied being why because what embodied beings need to survive and flourish are what mcintyre calls networks of uncalculated giving and graceful receiving okay as mutually dependent finite vulnerable embodied beings we have to have these networks of people that will care for us first of all based for our basic survival right if you're born you're a baby human human mammals and human beings among the mammals are the most vulnerable and dependent almost of any they need they have a long period where they have to be cared for by other people right and this and and and and again it's not just limited to them but there's a kind of interesting insight into the in into the truth of our vulnerability and mutual dependence just thinking about the anthropology of newborns like what what it means to be a newborn everyone is a newborn and even before that what it means to be a child a living human being in utero right i mean the network of uncalculated giving and graceful receiving par excellence is the network of the family right is the is the parent-child relationship and i won't get into this you can read the book and we can talk about it in the question period but you can immediately see if that's the network par excellence of uncalculated giving and graceful receiving and the ex and the anthropology of modern law and jurisprudence with respect to abortion and accessory production end of life decision making it shatters that network right there's no necessary connection in that network absent prior agreement it shatters the most important network of uncalculated giving and graceful receiving on which we depend and that's and that's a little preview of why grounding the law of abortion art and end of life in this false anthropology leads to devastating results for the weakest and most vulnerable and we can talk about that in the question period if you'd like to but i'd like to focus first on why we need these networks of uncalculated giving and graceful receiving it is first obviously for our survival also for our self-understanding we depend on people who give to us without any hope at all of getting anything back right it's not the case that our parents took care of us when we were little and did all kinds of made all kinds of sacrifices for us um because they were get they were getting something back for it right it wasn't it wasn't a transaction it wasn't a bargain for exchange right it was gratuitous giving and they thought of the child in in principle and in the best scenario as a gift not as a project but as a gift that was given to them in the right posture with respect to a gift is the gift is the is the posture of gratitude okay so when you think about these networks of uncalculated giving and graceful receiving there are virtues and practices that you have to you have to pursue in order to sustain these networks but let me say something else that's really important and this is a substantive claim of the book is that we are not simply dependent in some kind of selfish way on these networks of uncalculated giving and graceful receiving it is true we depend on them for our very lives but we actually depend on them more importantly for what it is that we're supposed to be human beings by virtue of their embodiment are made for love and friendship and by living in depending on and learning how to become a participant and a steward of these networks of uh uncalculated giving and graceful receiving we learn to become the kind of person that makes the good of others our own that can make the good of another person our own and can be the kind of person that can give in an uncalculated and uncontingent way not because of some utilitarian reason we have but because that's what it means to be a human being okay and the virtues and practices that are essential to to to to being a mature participant are the virtues of just generosity the virtue of hospitality the virtue of misericordia which means taking on another suffering as your own suffering accompanying them and suffering these are the virtues of uncalculated giving part of what mcintyre calls the virtues of acknowledged dependence and then there are also virtues of graceful receiving which include the virtue i've already mentioned of gratitude the virtue of humility uh humility is a proper is a proper fitting response to the receipt of a gift and realizing that the gifts you were given including the special gifts you have of privileges of being intelligent or talented or being grown being in a well wealthy family you didn't earn any of that okay so you should be grateful and you should be humble and you should also be mindful that other people aren't gifted in the same way that you are and it encourages a kind of generosity of spirit that leads us to give to others another virtue of not of graceful receiving is openness to the unbidden uh protestant theologian william may coined this phrase michael sandell popularized this phrase the idea that when you when you uh you have this kind of openness to the world you realize that everything is a gift you don't think about the greatest gift of all the gift of your family the gift of your child the gift of your parents as something to be rationally ordered and mastered and dumped or given away because it doesn't meet your own private preferences right that becomes really important in the context of abortion end of life decision making and accessory production for reasons that we can talk about but you have to be open to the unbidden you have to be tolerant of the imperfect you have to embrace the imperfect and this becomes especially important we think about our relationship with people with disabilities solidarity is a virtue of graceful receiving realizing that we're all sort of in this together and we have a responsibility to one another and really the only way you can pay back what you've been given is to share it with others another virtue of graceful receiving that is essential uh that grows out of our embodiment and and and and requires uh emerges from our participation and and dependence on these networks of of uh uncalculated giving and grace force even is the good of human dignity right the idea the insight that everybody matters everybody counts not because of what they can do for me not because of how i judge them to be valuable not because of how strong they are not because of how weak they are but instead of just by simply by virtue of the fact of their membership in the human family they have uh intrinsic matchless worth and we have to act accordingly right another virtue of the final virtue i'll talk about uh for graceful receiving and participating in these networks is the virtue of truthfulness right both for the sake of itself but also for the sake of of of others um in short all of these virtues both the virtues of uncalculated giving and graceful receiving they all come together and cohere under the ambit of the concept of friendship okay these are the virtues and practices of authentic friendship i'll say it again because of our embodiment human beings are made for love and friendship and the way you cultivate these practices is by it is pursuing activities that take you outside of yourself activities that draw your gaze up from your inner self to others to care for others regardless of what they can do for you and to cultivate your moral imagination to learn how to see the other in your and and the in the values and and and your obligations uh uh when you see others and the way put this in the most clearly clear way i can and this will be especially resonant with those of us who are catholic is to see jesus and other people okay remember remember that when you meet someone that that that and and mcintyre and others say see yourself in the other right i mean we catholics talk about seeing christ in the other the way and mother theresa is sort of the paradigm of this right but like the idea of when you see another person you remember your own vulnerability you remember your own unity of body and mind right you remember where you're going in terms of your vulnerability and your dependence and where you've been having dependent on other people for your survival and your self-understanding and by remembering in your own mind all these different principles we remember the community we bind ourselves to one another okay and again what the thing that i'll i'll end on here and again i've been the book is not framed as a catholic book right but it's perfectly clear that the anthropological principles that i've been articulating um are are the same principles that our church has been has been proclaiming for millennia right we are all made in the image and likeness of god we uh we should we don't we're not atomized individual wills we concern ourselves with one another we seek to make the good of others our own good we seek friendship with one another we we love god with all of our hearts all of our minds all of our strength and our being but the second part of that is we love our neighbors the way we love ourselves and that is a an even more concise and beautiful and true account of what i've been trying to say this entire lecture and what i try to say in the book so thank you very much for your attention and i'm happy to take questions in the live portion of this presentation awesome well thank you everyone for joining us tonight and thank you professor steve for joining us from your home tonight really grateful my great pleasure hi everybody nice to see you awesome well carter we've had some great questions come in and we're going to try to take as many as we can while also honoring our students time our fellows time and and your time um but one of the one of the broad questions that came out of this presentation um was drawing the distinction between bioethics and public bioethics and i think some of our fellows and their questions are maybe pre-med or maybe pre-law and those who are pre-med may be more drawn naturally to kind of considerations of bioethics whereas some of our students who are maybe in the law school or thinking about law school are concerned about public bioethics could you take a moment to kind of flesh out a little bit of their similarities the way they rely upon one another and maybe also what some of their differences are yeah absolutely so bioethics itself is a field of intellectual inquiry okay so bioethics is i wouldn't i don't think it's fair to call it an academic discipline i i think it is it is um at its best interdisciplinary it's a conversation between people with different specialties physicians scientists theologians philosophers legal scholars social scientists and the like um i think that that's how it was originally emerged on the amer in the american landscape at least in the late 60s and early 1970s in response to a series of scandals crises in the practice of medicine there was a perception that as doctors became more adept with the technical skills of their disciplines they became humanly more distant and whether or not that's an accurate reflection of what the reality was that's what the perception was and so you had a kind of reaction in the academic discourse to grasp onto principles of autonomy and self-determination in response to uh that clinical context and that uh in parallel with that and that's sort of what bioethics was and then there were some centers the hastings center was formed the pellegrino uh center the uh kennedy institute of ethics reform all these little think tanks kind of grew up inside and act outside the academic setting to ask sort of academic questions about what's the meaning of of uh the doctor-patient relationship how should we think about human subjects protections human subjects research and such like uh at the same time in parallel with those sort of academic and quasi-academic conversations there emerged a series of public incidents and i talk about three of them in the book i talk about the um the publication of a uh of an article in the new england journal of medicine about 22 highly unethical human subjects research experiments involving no consent at all except in two cases of the 22 in which children intellectually disabled children were injected with hepatitis folks suffering from dementia were injected with live cancer cells uh people were exposed to different kinds of infections in the military or prison in the prison setting uh and this sort of sent shock waves through the not not just the intellectual community but also the government and around the same time it came to light that our own government in 1932 started a series of observations in tuskegee alabama macon county alabama which is a very poor area mostly populated by poor african-american sharecroppers and in the 30s this had the high they had the highest incidence of syphilis of any community in the country and so u.s federal not federally funded but actually u.s government employees went to tuskegee alabama and told the the poor residents there that they were simply checking them for bad blood they never told them that they had syphilis never gave them any treatment and the plan was to watch the natural history of the disease progress untreated and then even more scandalously in the 1940s when pen when antibiotics became a standard of care which would ameliorate some of the symptoms of this terrible disease they not only didn't give them uh antibiotics they deceived them uh and prevented them from getting antibiotics from from the local medical community and even the local university uh terrible scandal and then the third scandal that uh that gave rise to public bioethics was a scandal again uncovered in the washington post about a discussion at the national institutes of health the the u.s government research agency federally funded research involving babies that had just been aborted outside ex utero outside their mothers bodies aborted imminently dying but still alive and there was research being done on these newborn aborted babies that would extend their lives and cause them enormous suffering in addition to the suffering that they already endured at the hands of the abortionists and so these three events gave rise to a massive pushback in the in the public square um and uh uh hearings were convened and statutes were passed and uh and this this sort of gave rise to the area of public bioethics which i described in my talk as the governance of science medicine and biotechnology in the name of ethical goods so that is the work of not just the political branches of government the legislature and the executive branch but also the work of courts roe v wade for example is a pristine example of american public bio because the governance of medicine um in the name of uh a deeply i think confused and misguided and problematic uh good in quotation marks of self-determination um by means of ending the life of an innocent uh child in utero so um short anthem is a long-winded answer but like the short distinction is bioethics area of scholarly inquiry and public bias is what legislatures and courts do uh on these questions thank you so much yeah that helps differentiate it even even for me a non-expert so thank you a question that came up in response even to your response here is what opportunities are there for some of our our students going forward for careers in public bioethics is it restricted to um attract through through law school or are there opportunities through advocacy via non-profits what's the landscape of kind of a career to be made in and on behalf of public bioethics yeah so i i get this question a lot and i think what i encourage students to do is to go and pursue some kind and this gets back to what i was talking about earlier that i think that biotics at its best and this is true of public buyers is that it is an interdisciplinary activity so that means the participants have to have expertise in a field it can't be a big mistake people make is they will go and they'll get a master's degree in bioethics or even a phd in bioethics and it's a lot of of small bites at different disciplines without actually becoming genuinely immersed in any one of those disciplines and i think it's not the best way into the into the into the field i think it's better to enter in through the mastery of one of the foundational disciplines so that's law you go to law school uh you can go uh get a phd in philosophy get a phd in theology uh moral theology i mean at its inception moral theologians were really the original thinkers in american in american biology and american public bioethics i mean it is uh moral theologians are in some ways some of the best situated folks to fig to to make arguments and understand arguments uh gil mylander for example who is a lutheran uh christian um moral theologian uh was a member of the president's council on bioethics and he is just i mean you know him pete he's just an extraordinary person he's brilliant he he frequently writes essays that are beautifully written but they're also accessible to a wide variety of folks and that have themes that resonate with with all people not just folks who are his co-religionists um and look paul ramsey uh uh joseph fletcher i mean at the very beginning moral theologians kind of dominated richard mccormick sort of dominated the scene um so uh it'd be a it'd be a tough sled to go and get a md for the sake of being involved in in bioethics um but but physician those who have expertise in in the clinical practice have a special sort of understanding and insight to weigh in on clinical questions right and so leon cass who was my mentor and boss at the president's council on bioethics his background he had a phd in molecular biology and an md and was originally just going to be a researcher but kind of was taken by the great books of western civilization went to go teach at st john's college in annapolis maryland where i went to college my wife went to college and then he um uh and then he ended up at the university of chicago teaching in the in the in the college there and then in the committee for social thought we teach things like king lear and the bible and wrote a book on genesis finishing now a book on exodus this is a guy who's training in is in science and medicine uh so i mean if you have the leisure and the and the resources to do that and and you really do have a heart for clinical care then that's another that's another pathway but the fundamental point is don't get a phd or an md or an m.a in bioethics go become a a master of a particular field that's relevant to the question of biologists and enter in through that pathway that's my suggestion and then the deeper the second part of the question is what can you do right um you can do all sorts of stuff i mean i i had i had a research assistant when i was the general counsel of the president's council on biotics she was going to law school at night she left and became counsel after she graduated council to a a committee in the house of representatives who had oversight responsibility for the department of health and youth services and f and the fda and the nih so she was involved directly in questions relating to um medicine and biotechnology and human subjects research through an ethical lens uh albeit through the with the tools of the law uh i mean there are there are lots of interesting think tanks i mean the ethics and public policy center in washington dc um you've got the hastings center in new york you've got uh the kennedy institute of ethics and the in the pellegrino center for clinical medical ethics you got the mclean center for uh medical ethics at chicago uh there are a lot of different places where you could you know be a researcher uh or a policymaker there's all kinds of um interesting points of entry but my my as a lawyer and a policy person i strongly recommend that folks get involved through the legislative and executive branches of government where you can advise policymakers and you can advise lawmakers and those who are charged with enforcing the law how to best approach these complicated questions yeah thank you so much carter for that that's incredibly helpful for those who maybe aren't looking to pursue a professional path on behalf of public bioethics what would be some resources books or people that they should kind of keep an eye out for ways in which they can kind of even at a baseline fundamental level begin to build familiarity and vocabulary of surrounding kind of these issues that clearly aren't going to go away and are going to be kind of incumbent upon every catholic to kind of um witness toward or witness against as as we move forward culturally yeah so i've i would i think you tell me i think we're going to give everybody a copy of my book absolutely although that is true uh the um no my book is designed for for lay people right i mean the first there's an entire chapter that will give you a pretty concise arc starting with the 19 from 1966 to 2016 on the arc of american public bioethics in in a pretty full account and that that's that's um that it's a sort of thematic genealogy of the american public biologics that's a good point of entry and then i've got in a very deep dive into abortion assisted reproduction and end of life decision making uh along with an extended reflection on the kind of anthropological methodology that i ask spouse in my talk um i think that gill mylander if gilmar if gil mylander writes something you should read it i mean no matter what it is our first book in the catholic ideas for a secular world was written by lutheran gill mylander the book series we have here at notre dame press through the center the nicholas center and it's about adoption and it's a beautiful book about adoption and it's a theological and gill is so smart he's like alistair he's mastered all kinds of literary works and philosophical works and even popular culture it's just very very interesting and he's got a little book called body soul and bioethics and it is he's also got a book called bio that's a primer for christians which has just been reissued i actually think body soul and biotics is better it's a series of short essays that he wrote on a wide variety of topics including on bioethics itself as a discipline in a field which is fantastic i assign it to all my law students who take my law and bioethics seminar so gil mylander leon cass wrote a really interesting book in the early 80s called toward a more natural science uh and it's a series of essays uh even though he wrote them in the 70s and 80s they're completely relevant in apps today uh just about how to think about these questions and and he's in leon is um is uh by background he's jewish but he is very much a student of aristotle and particularly as it applies to the natural sciences and and virtue and ethics he's he's really more of like an ancient than he is anything else uh and he's just great and this book called toward a more natural science is really really interesting um the third thing i would encourage the next thing i would encourage people to look at if you go on to the you can do a google search for the president's council on bioethics just do a google search for that and it'll take you to the georgetown bioethics library webpage and on that web page is every single meeting and the website archived of the president's council on bioethics that i served on okay and it has a transcript of every single meeting that we had but it also has for those books that where copyright permits it and almost all of them do it has pdf versions of every report that we did okay and anything that you're interested in it's organized thematically if you're interested in accessory production or end of life or organs or the definition of death you can go on there and read these amazing conversations between these extraordinary people who are on the council on bioethics and the witnesses that we brought before the council to testify and the first meeting of the president's council on bioethics the first thing we talked about was um uh was the was a short story called the birthmark um and uh and it's really uh incredible it's um it's uh i think if i'm if memory serves it's nathaniel hawthorne am i right about that the birthmark anybody pls kids are you gonna chime in on this um hang on a second let me let me make sure that's right uh yeah it's it's uh yeah it's by nathaniel hawthorne and and it's an incredible short story about a scientist who is obsessed with perfection and he's got this beautiful wife and she's beautiful in every respect except she has this one birthmark that he can't that he's fixated on and i don't want to spoil it for what happens but the book is about intolerance of imperfection scientific hubris and unintended consequences of of applying rational mastery to things that you should receive as gifts in a spirit of gratitude and love and and um uh rather than something to be rationally ordered and operated on as an object and uh the first meeting we had a kind of conversation about this short story and uh and you can read the conversation some of the council members who had a clinical science background were a little weirded out by it they're like i don't understand why we're talking about this the press went nuts they were so unhappy with that they said we're wasting money on a graduate seminar for all these folks but it was it but it set in motion a kind it set the tone for the way leon wanted to run the council itself which was entering into the question as deep human concerns not organized according to biotechnologies but rather on human aspirations and human flourishing and there's a really cool book called being human which is a series of excerpts of cl of works of literature uh classical literature anna karenina the iliad others that echo um the questions and themes that that you encounter in in modern bioethics it's really a neat book so president's council on bios google it and just kind of read around the website you can you can find some really cool stuff awesome thank you and friends we can follow up with some links for those who are on this call to make sure that you get pointed in the right direction in case you haven't been able to jot that down i think we have time for maybe one last question carter if that's all right um and it's coming from uh one of our soren fellows who i'm told is joined by a slew of other soren fellows watching with a watch party i'm sure socially distancing oh i see that look at that there they are it's not amazing um so this is coming out of a comment i think that that you made in your talk about the centrality of family life as reflective of really the fundamental relational character of who we are is understood through a theological anthropology most most fully and i i think about the line uh that john paul said about as as the family goes so so goes the world and it's so much more given the kind of content and scope of your talk than just a florally kind of catholic quote to put on a plaque and put on your wall or whatever and and so that the question that kind of came out of that from from zeff is if you could kind of explain a little bit further the connection between embodiment and the necessity of of friendship and what i'm going to imagine is that wasn't necessarily at all our fault conference talks last year um but if if you could if you could spell out a little bit more the connection between embodiment and the necessity of friendship absolutely so um because we are bodies certain things follow from that there are certain challenges and certain gifts that follow from that right one of the fundamental realities of inarguable realities of embodiment is our vulnerability our mutual dependence and our and our being and are being finite being subject to natural limits okay we cannot survive as isolated atomized individuals first of all you would die right especially at the beginning of your life and for sure at the end of your life and probably at many many points in the midst of you know charles taylor talks about uh about this a lot in his book is his essay um uh atomism you should check it out it's really it's really an interesting essay really on this kind of idea of where there's an idea of freedom without belonging there's an idea of of of the unencumbered will without a principle of belonging and connection to others and obligation to others um and so the idea here is that because i am a body which is finite subject to natural limits vulnerable and therefore mutually dependent on others what i need to bait for basic survival but also for the flourishing of becoming what i mean and i meant to be even by the way through the lens of expressive individualism to express myself and to realize my identity through expression requires requires and implies an interlocutor right this further uh supports taylor you know the notion that we're dialogical like you i the only way i can express myself is to another person like if you don't have another person there expression doesn't really mean anything right it implies communication so um because of my embodiment because i am embodied i am dependent on others for basic survival and for realizing what it is that i'm supposed to be and the network what you need for survival as an embodied being is what mcintyre calls and what i talk about in the speech as networks of uncalculated giving and graceful receiving you have to be embedded in a web and you are embedded in a web by the way when you're when you're conceived in the womb you're already embedded in in multiple relationships intergenerational relationships you're in a community i mean even though you're in utero you're you're part of a web of connections and relationships that you don't choose with privileges that you're not entitled to right you didn't earn the privilege to be taken care of by your parents and um you know and and for that matter uh they don't their obligation to you is not a function of contract and choice so these are these are embedded relationships that we have by virtue of what we need to survive and in these webs of uncalculated giving and graceful receiving there are certain virtues and goods that have to be cultivated in practice to sustain them which mcintyre calls the virtues of acknowledge dependence and then a few other virtues that i talk about in the talk just generosity hospitality uh misericordia accompanying others in their suffering as well as gratitude and solidarity and human dignity uh and truthfulness and all of these things all of these things neces are necessary to keep these networks sustainable but they're also they also transform you into a kind of needy passive recipient of uncalculated giving to a participant and a deliverer of uncalculated giving for for others and the and you learn to become by being the object of love and friendship from someone who makes your good their good for no other reason than they regard you as a gift to be received with gratitude which is what happens in a family ideally you learn how to become that kind of person that makes another good your person's good your own good all of these goods and virtues and practices are understood through the lens and under the ambit and under the auspices of friendship or understood in the deepest and richest sense the aristotelian sense of of of of making the good of another person uh your own fantastic thank you carter and i think this is a great point to to pause and and maybe begin to close up shop for the night but uh you know on behalf of the soren fellows and on behalf of the dcec thank you for leading the way in this uncalculated giving and graceful receiving um the work of the dcec both from the internal perspective as a staff member but also uh from from all of our students and and fellows were we're following your lead so thank you for your your witness on behalf of all that's good true and beautiful and our blessed mother's university well thank you pete and you are inspiring to me and to everyone that you meet and and our sworn fellows are a source of inspiration and i'm just fortunate and blessed to be able to play some small role in their in our shared life together break by brick let's do it absolutely absolutely thank you so much carter have a good night thank you everyone take care yourselves take care of each other bye

Channel: de Nicola Center for Ethics and Culture ndethics

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Id: 3HDQuf9GtQM

Length: 59min 43sec (3583 seconds)

Published: Wed Sep 23 2020