The Regulation of Bioethics and the Human Individual
Richard Reinsch (00:04):
Today we’re talking with Carter Snead about his new book, What It Means to Be Human: The Case for the Body in Public Bioethics. Carter Snead is the director of the de Nicola Center for Ethics and Culture at Notre Dame University where he is also a professor of law and a teacher in the political science department. He is also a member of the Pontifical Academy for Life, the principal bioethics advisory board to Pope Francis.
Carter, we’re glad to have you on Liberty Law Talk for the first time.
Carter Snead (00:57):
No, it’s great to join you. I’m a big admirer.
Richard Reinsch (00:59):
Great. So what does it mean to be human, and why do you think public bioethics is getting the answer wrong?
Carter Snead (01:09):
Yeah, so the first claim of the book is a kind of methodological claim, and the argument that I make is the best way into understanding law and public policy is to ask the question of what vision of human identity and human flourishing is underwriting the law and the politics and the public policy?
The question of what it means to be human is a perennial question that has been debated and discussed ever since human beings became capable of self-reflection. But my argument is, and this may be counterintuitive to some folks, some people think of law and politics not only separate from normative questions, but separate from what I’m referring to in the book as anthropological questions, as the contested question of what it means to be and flourish as a human being.
But the argument in the book that I make is that because law, fundamentally, and is really only intelligible through the lens of its purpose, which is to promote the flourishing of persons and to protect persons, the law has to have an ex-ante assumption about what person is and what constitutes human flourishing. Otherwise, the law, there’d be no way to know if the law is doing what it’s supposed to be doing, there’d be no way to measure its successes, you have to have the metric of its purpose and the premises that underlie those purposes. And so my argument is that if you want to understand the law most richly, most deeply, that’s the question that you have to ask. And it’s especially true in the context of public bioethics, which deals with not only the question of what human flourishing is and what human beings are, but the boundary questions of who counts as a human being? Or who counts as a person rather, the question of who counts as a human being as a biological matter is an easier question, but the question of legal personhood and moral personhood is really the central question of bioethics.
And it becomes operationalized in law and policy when it enters the public domain, either through political branches or the judiciary. And so you’d ask, why does public bioethics get the question wrong?
Richard Reinsch (02:54):
And by the way, just wanted to say, I was pretty sure when I read the title, I knew what public bioethics is, but maybe just set forward that, too.
Carter Snead (03:01):
Yeah, absolutely. So bioethics as a field of scholarly inquiry emerged in the United States in the late ’60s, early ’70s, in reaction to a series of scandals, public scandals involving human subjects protections in Tuskegee, Alabama, and really all over the country, as documented by Henry Beecher in a article in the New England Journal of Medicine. And so as the field of inquiry, people sort of asking questions about how to think about the clinical relationship and doctors and patients and the ethical dimensions of that relationship, as well as the public policy questions associated with the governance of science, medicine and biotechnology. And when I say public bioethics, what I’m referring to is that area of law and policy, the governance of science, medicine, and biotechnology in the name of ethical goods, and that takes place at the level of the political branches. It takes place in legislatures at the state level and the US government, the federal level. Also takes place in the judiciary, the most prominent bioethics case and maybe the most prominent case of the modern era is Roe vs Wade, which set in motion a cascade of legal policy and ethical disputes over abortion. And so the distinction between bioethics as a field of inquiry and bioethics as public bioethics, is the latter relates to governance, it relates to actually the work of lawyers and judges, and lawmakers.
But the interesting thing that happened is, each case, Tuskegee, the Beecher studies, as well as the case involving the just-aborted newborns, the solution was rooted in a kind of vision of human flourishing and human identity that didn’t track the violations that they were responding to. That is to say, every single individual that was violated in those three instances, was not operating at the full range of human autonomy.
Richard Reinsch (04:17):
What has shaped public bioethics in America? Because you mean to uproot, or really challenge, the standard operating premises and legal assumptions and conclusions of this field, but what’s shaped it?
Carter Snead (04:30):
Yeah, so public bioethics as a field of law and public policy is reactive. I mean, a lot of law and policy is reactive, but it’s been reacting to scandals. And the first piece of legislation that relates to public bioethics was the National Research Act, which was adopted in the early 1970s, in reaction to these scandals that I just mentioned a moment ago. So there were these scandals of 22 human experiments, documented by Henry Beecher, which involved the most prominent and elite institutions in America, including the Federal government. Research protocols in which individuals, especially very vulnerable individuals, were treated in grossly abusive ways. We had children with intellectual disabilities and injected with hepatitis, we had elderly patients suffering from dementia injected with live cancer cells.
This was all done almost entirely without any mention of consent at all, and those narrow cases in which consent was secured by proxy, nothing of the material risks in these protocols were even mentioned. Tuskegee, the 40-year-study, natural history study of syphilis done by the Public Health Service, the US government in Macon County, Alabama, in which they systematically deceived poor African American sharecroppers about what they were doing. It’s been reported that they colluded with local health authorities to prevent them from having access to antibiotics, which became standard of care for syphilis in the mid 1940s. For 40 years, this went on.
Richard Reinsch (05:53):
Wow, that was incredible reading that in your book. And also they persuaded medical providers locally not to treat these men.
Carter Snead (06:00):
Yes, that’s exactly right.
Richard Reinsch (06:03):
Carter Snead (06:04):
It’s shocking. It’s a shocking scandal. It was a shameful abuse of an already vulnerable community in Alabama where I grew up, and then a third scandal that is actually less, and a lot of people have heard of Tuskegee, a lot of people have head of Beecher and his study.
Not many people have heard of the third scandal that set in motion American public bioethics, which is a scandal involving researchers from the United States who traveled to Scandinavia, probably with funding from NIH, although that’s not been definitively established, to perform experiments on babies that had just been aborted. And Scandinavia, they performed abortions by C-section, and they would remove the babies intact, and they would expire shortly thereafter. These doctors would go to Scandinavia, contract with the abortionists and the women who were involved and would perform kind of grotesque experiments on these imminently dying newborns who had just been aborted. And The Washington Post had three front page articles about it in the early 1970s, it was a huge scandal. In fact, the Kennedy family, Eunice Shriver, sister of Ted Kennedy and John F. Kennedy, was so upset by this that she reached out to her brother who convened hearings and her daughter, Maria Shriver, who everybody knows is the former First Lady of California and successful American journalist, organized a protest with the Catholic schools in the DC area to come to NIH to protest this research. And so, after a series of hearings, the National Research Act was passed which imposed a moratorium on this live fetal, live neonate research. They created the National Commission on Bioethics, and it was meant to be a kind of national response to these emergent ethical questions that had public policy dimensions.
But the interesting thing that happened is, each case, Tuskegee, the Beecher studies, as well as the case involving the just-aborted newborns, the solution was rooted in a kind of vision of human flourishing and human identity that didn’t track the violations that they were responding to. That is to say, every single individual that was violated in those three instances, was not operating at the full range of human autonomy. They were vulnerable, they were diminished, either by circumstances or by their physical condition, their cognitive impairments in the case of the Beecher studies, and the case of immaturity with respect to the babies that were being experimented after they had just been aborted.
The solution was to extend informed consent, which is rooted in the concept of autonomy and self-determination, as the primary bulwark against these kinds of abuses. But you don’t need to think about it for very long to realize that people who are not capable, either by virtue of circumstance or their cognitive impairments, of exercising free will to the extent that would be necessary to protect themselves through participating in an informed consent procedure. That’s not the right solution to the problem, and that, you can see immediately that the issues of vulnerability and embodiment that arise in these contexts and the asymmetry between the problem and the solution, the solution is suited for a population of able-minded, able-bodied people who are not subject to circumstances or conditions that impair their free will.
And so that kind of asymmetry plays out from the early 1970s to the present day, and in my book, I take the three vital conflicts of American public bioethics, the vital conflict of abortion, the vital conflicts relating to assisted reproduction, and then at the end of life, end-of-life decision making and assisted suicide. And what I try to through this analysis of the premises that underlie the law regarding human identity and human flourishing, I find that we have very much the same problem. The problem is the vision of the person that’s assumed by the law is one that doesn’t reflect or track the lived reality of the people who are endangered in those circumstances.
Richard Reinsch (09:51):
So talk about this, you set the standard, define the standard, call it embodiment versus expressive individualism. What is embodiment, and why should we follow that standard?
Carter Snead (10:06):
Yeah, so the simple insight, and it’s a simple insight and I think it’s an insight that’s easy to understand and easy to verify based in reflecting our own experiences, that we human beings are embodied. That is we don’t just have bodies, but we are bodies. That is we come into the world embodied, we experience ourselves as bodies, we experienced one another as bodies, we experience the natural world around us through and as our body. We’re living bodies, we’re dying bodies, we’re subject to the fact that our bodies are corruptible, the fact that we are dependent upon one another by virtue of our vulnerability as embodied beings.
We are mutually dependent and we’re subject to these natural limits. And from that reality, the law and policy and the way we relate to one another has to be informed by that reality of embodiment. Now, you take that vision of the human person that is taking the body seriously, and understanding that embodiment is an essential aspect of being a human being, and you contrast that with the anthropology of what Robert Bellah, social scientist who wrote the classic in 1985, Habits of the Heart, and then later philosopher Charles Taylor, and after a fashion philosopher Alistair McIntyre and Michael Sandel, and others refer to as expressive individualism. It’s a very different vision of what it means to be a human being. It’s a kind of abstraction, it conceives of a human being, primarily as a disembodied will.
What defines the human person is his or her will. And what constitutes human flourishing is the interrogation of the interior of the self, to discover one’s own unique, authentic, original, maybe transgressive truths, and then configure your life and your destiny according to what you discover inside yourself. You express it, and then you configure your life accordingly. And the fundamental unit of human reality is the individual, is the atomized individual will. And so the world is a world of individual atomized wills seeking to pursue their own hopes and dreams, and everything else is instrumental to that end. Relationships with other people, the natural world itself and fundamentally, also the body is an instrument to realizing the goals of the will. And within this framework, there are no unchosen obligations, there are no obligations that you didn’t agree to in advance. Everything is viewed through the lens of your projects and your purposes as you devise them through the internal interrogation of the depths of yourself.
in Paradise Lost, you have this amazing scene where Lucifer addresses the other fallen angels, denying their creaturely status before God and saying, “We have no recollection at all of being created. You tell us that we’re creatures that have obligations of creatures to their creator, but we don’t remember being creatures. We don’t remember any time when we weren’t operating at the height of our powers, when we weren’t self-determined, when we weren’t powerful and able to make our own way in the world.”
And Robert Bellah, when he did hundreds of interviews with Americans in the 1980s, found that this is a vision of human identity that is very common in the United States. And Charles Taylor traces the genealogy all the way back to Rousseau, who sort of transposed and reconfigured the human identity from a position that is defined by one’s role in a particular community, or society, or family, or civilization, to focusing on the inner voice as definitive and decisive regarding what one should do and be. And this took hold, not surprisingly, in artistic and literary communities and the romantic literary movement even before that. And you see artists who were reacting against the sort of linear, harmonious traditional standards of art, to try to plumb their own interior depths, to find their own originality and to project it, and not just to project it in their art, but to live it in their lives. And then somehow, in Bellah’s account, is through developments in psychology and Freudian psychotherapy and different corporate forms and different kinds of sociological changes. That notion of expressive individualism moved into the conventional communities and the conventional populations.
And then in the 1960s and ’70s, the sexual revolution sort of fixed on the proposition that human sexuality and sexual expression is a key element of expressive individualism, a key element of defining oneself. And it’s not surprising that around that very same time, we see this emergence of public bioethical questions involving abortion, assisted reproduction, end-of-life decision making that largely track that same anthropology.
Richard Reinsch (14:07):
And just thinking about these three very controversial areas, expressive individualism would seem to have a hard time with the unborn and saying, “Why are they worthy of legal protection?” Anyone who is not sort of fully active and able, mentally and physically, but it extends out to children even, to infants, to the elderly. A lot of people come under that standard, that purview. So I guess in a way you’ve deified the individual or you’ve made the individual sovereign under this standard.
Carter Snead (14:43):
Yeah. No, that’s exactly right. I mean, it’s not just that one doesn’t recognize his or her obligations to children, the elderly and the disabled, one can’t even give an intelligible account of what they are. They remind you of Bertrand de Jouvenel’s comment about certain social contract theorists, that they’re like childless men who forgot that they were children. And even before that, obviously, in Milton, in Paradise Lost, you have this amazing scene where Lucifer addresses the other fallen angels, denying their creaturely status before God and saying, “We have no recollection at all of being created. You tell us that we’re creatures that have obligations of creatures to their creator, but we don’t remember being creatures. We don’t remember any time when we weren’t operating at the height of our powers, when we weren’t self-determined, when we weren’t powerful and able to make our own way in the world.”
It’s a kind of anthem of expressive individualism, and it’s not unlike the passage from Anthony Kennedy in Planned Parenthood versus Casey, when he talks about what’s essential to the kind of liberty that he is espousing, that includes the right to abortion, is the liberty to define for oneself, the mystery of life, the universe and to follow one’s spiritual imperatives unmolested by others or the law.
Richard Reinsch (15:56):
Yeah. Now, expressive individualism, I would argue, is sort of a heretical thinking here within liberalism. I don’t think liberalism is doomed to end up there.
Carter Snead (16:07):
Richard Reinsch (16:07):
And it’s not necessarily the case that it, as a certain scholar at your school would argue, that this is sort of an inevitable outcome of liberalism in America, I don’t think that is the case.
Carter Snead (16:17):
I can’t imagine who you’re talking about.
Richard Reinsch (16:18):
I can’t either, but here we are. And it did emerge, freedom as will, I think is what you’re articulating here, and this sort of deified person. And by the way, I mean, that notion goes back, I mean, to the transcendentalists, early 19th century America.
Carter Snead (16:33):
Richard Reinsch (16:33):
I mean, the famous Harvard “Divinity School Address.”
Carter Snead (16:37):
Richard Reinsch (16:38):
Which has sort of looked into your own self for your truth.
Carter Snead (16:41):
That God is in every man.
Richard Reinsch (16:42):
God is in every man. So in that regard, I understand it, but I guess… So the public bioethics emerges in the 1960s, and clearly something does change throughout every western country in this time frame, as the West sort of, I would argue, sort of gives up on some things and tries to latch on to new things to understand itself. You have a quote in there, and I think it’s also key, and it’s from Walker Percy and I love the quote. Everyone has an anthropology. Everyone has an anthropology, yours is embodiment, that we have to understand ourselves in relationship to others, and to other people, and the gifts that we owe them. So what happens… I mean, I think we know very well, I mean, our entire world as Americans is dominated with this idea of expressive individualism. I mean, have you thought about, well, what would it look like if your idea, if your anthropology came into play?
Carter Snead (17:31):
Yeah. In the book, I make the point that expressive individualism is not utterly false, right? It’s a kind of distortion and a deeply incomplete account of who and what we are. It is true that we are individuated, right? We are individuals. It’s also true that we’re free. And those are important things, and it’s even true that the interrogation of the depths of one’s self can be valuable to try to discover certain kinds of truths and certain kinds of ways of being that, in some cases are correctly transgressive of repressive norms and wrongheaded standards in our culture, in our society and our tradition. But that’s not the whole truth, you run into trouble when you think that’s the whole truth about what we are.
I talk about augmenting the anthropology of expressive individualism with an anthropology of embodiment, which is to say, we have to also embrace the proposition that we are, as embodied beings, vulnerable, dependent and subject to natural limits, which situate just in relation to other people that bring with it certain kinds of unearned privileges and unchosen obligation. And in order to bring about a culture, a society, a legal framework that takes that seriously, we have to look to what Alasdair MacIntyre calls the networks of uncalculated giving and graceful receiving which are essential for the flourishing of embodied beings. You have to have these things. You have to have a world, you have to have a society and a community in which there are people who make the goods of others their own goods, without expectation, without a contract, without a transaction, without thinking, what am I going to get out of this? That they’re actually making another person’s good, their own good.
And we all depend on that, literally, for our survival when we come into the world, and at that those moments in our life when we become heavily dependent, and for sure, for everybody, as our life is nearing its end, when we’re completely dependent on others. You have to have these networks in place. And in order to preserve these networks, you have to have a people that are willing to practice the virtues of what MacIntyre calls the virtues of acknowledged dependence. That includes the virtues of uncalculated giving and graceful receiving. The virtues of uncalculated giving are things like just generosity, hospitality, what he calls misericordia, which is the virtue of accompanying other people in their suffering, as well as gratitude. The idea that you have to be grateful for the fact, that need to practice gratitude. You have to be open to the unbidden, you have to be tolerant of imperfection, you have to be humble, you have to respect the dignity of others, you have to be honest.
And these are all the virtues of authentic friendship, rightly understood in their kind of Aristotelian sense, leavened by, as my good friend Yuval Levin reminds us, by the proposition that all human beings are created equal, something that Aristotle didn’t quite understand or agree with. And to have a community, to have a civilization that takes the body seriously, the civilization that cultivates those virtues, that supports those networks, and the law as we all know, can play a role, has a wide array of very granular mechanisms, including just leaving people alone and giving them space for private ordering to allow them to create communities that take care of folks in those ways without interfering. But in those instances where that help and care is not forthcoming, then sometimes the law does have to intervene to protect people. And so a society that takes seriously, a community, a legal culture that takes seriously embodiment, is one that is committed to shoring up, protecting and advancing networks of uncalculated giving and ungrateful receiving and helping people. And helping can sometimes just mean leaving people to private order to cultivate those virtues and practice them.
Richard Reinsch (21:08):
You have three areas here where you sort of set forward how embodiment would change current law, current practices around abortion, assisted reproduction, and death and dying. Kind of off the wall thought here, I don’t know what you think of this. Since we’ve been living expressive individualism for a while, I had a thought. Is identity politics sort of the dialectical outcome of expressive individualism? Because what I was thinking is, there’s a point at which people realize that this is sort of empty. It sort of implies the sovereignty component sort of drops off at a certain point, and you actually want to recreate community. You actually do want to recreate some sort of dependency, some sort of meaning, order, something that has value and status. And that’s igniting identity politics in a certain way. It’s an attempt to recreate community apart from this sovereign self that we’ve been living with now for several generations. Have you thought about that?
Carter Snead (22:11):
Yeah. No, I think that’s a really interesting idea. I mean, Bellah and others say that one of the problems with expressive individualism, and Peter Lawler said the same thing, is that it is disorienting. The radical freedom of expressive individualism is so disorienting, because we can’t understand ourselves if we are a blank slate. We don’t know who we are, what we’re supposed to do. Alistair McIntyre says, I don’t know what to do unless I understand the stories of which I’m a part. So without a narrative, I don’t understand what I’m supposed to do. And so when people are said, “Okay, you’re completely free. Free of tradition, free of family, free of social roles, free of any obligations to your children or your elders, or anybody. Go for it, whatever you want to be, you be that thing.” That’s a kind of disorienting and terrifying and inhuman state to live in, because we are relational.
We are social animals. And people start to feel anxiety, and they start to feel disoriented and dislocated, and it makes perfect sense that people will want to cling to community, to roles. And this kind of tribalism that we’re seeing reflected in identity politics, as you just pointed out, it could very well be a reaction to that. The other thing that people have observed is that when you are expressive individualism, the dislocation, the kind of nakedness of the expressive individualism makes people susceptible to tyranny. It makes them easier to dominate. It makes them easier to fold into tribes and to organize and to mobilize, precisely because humans have that need to be part of something, to understand themselves in a larger narrative. The problem for identity politics, it seems to me, is it doesn’t have the resources to actually defend membership in-group if membership is simply a matter of what I choose to identify myself as.
Richard Reinsch (23:52):
I think the membership is formed by the ability to hurl accusations against the transgressor.
Carter Snead (23:59):
Right, certainly, that’s the way to distract people.
Richard Reinsch (24:01):
Yeah, in this case right now it’s the white, male, heterosexual, but some sort of scapegoat. So that’s the unity which unites a lot of these different identities together. You look around too, there’s nothing really inside me worth value, but there are these dominant opinions that I can attach myself to. And identity politics tells you who’s wrong, who’s right, what the future can mean if we have power, and what we should do with it. And say, like Ibram Kendi, the goal was totally equitable racial outcomes, which is sort of its own element of perfection that we can never achieve, but we’re always striving for it, but a lot of people will suffer along the way. So yeah, as I thought about that, it seems to me this, and it’s radically identified with people in their 20s, or seem to. These are clearly highly educated white college students, and I’ve thought as I was reading your book, maybe they just know that this is over.
Carter Snead (24:53):
Right. Yeah, no. It’s interesting. I mean, it’s an unstable haven, though, it seems to me, because the rules for identity politics and who’s in and who’s out seem to be constantly shifting. And as a strategy, if you’re genuinely not a member of a discrete and insular minority that has a history of abuse and mistreatment and you’re simply an ally, you’re never quite stable. The only way that you can secure your place is to be a constant critic of others. You see this on college campuses. I used to know kids when I finished high school and a lot of my friends… I went to St. John’s College in Annapolis, which is a weird little college, and it was blessedly free of politics. People had no idea what was going on, people didn’t read newspapers or watch TV. It was just it was kind of a weird little bubble, which was great. But we grew up in Birmingham, went to public school. My friends who went to places like Wesleyan, Smith College and Amherst and those kinds of places, Cornell, Vassar, they came back at Christmas break-
Richard Reinsch (25:49):
Carter Snead (25:49):
Like they were intoxicated by all the new information, all the identity, all this stuff. And the current moment in American politics feels like we’re being governed by the RAs and the hall staff of Wesleyan College. Feels like the same kind of intensity and anxiety that accompanies that setting, has made it to… And maybe just because people have grown up and now they’re in charge, but my friends would, first of all be intoxicated by all the new ideas, but then there was this extraordinary anxiety of how do I situate myself in this narrative of oppressor or oppressed, where I’m not the enemy? And it was a constant struggle to figure out how to define themselves within that narrative, to where they’re on the right side of history, they’re on the right side of the conflict. And a lot of them had nervous breakdowns, a lot of them just became completely freaked out. People would vandalize their own dorm room doors with epithets that they could then claim victimhood status. These are mostly wealthy white kids in Birmingham, Alabama. And that kind of anxiety is something that I feel like… I mean, again, Twitter is not real life, but if you go on to Twitter, it doesn’t feel that different to me.
Richard Reinsch (26:52):
Thanks for indulging me on that. It does seem that the way I’m reading the transgender community that that notion of altering your body, surgically altering your body to make yourself into a new gender, that that is right out of expressive individualism and right out of an anthropology that you’ve defined here.
Carter Snead (27:15):
Yeah, I mean, you see it in the transhumanist community in a very dramatic way also. These are very successful, high tech entrepreneurs in the Silicon Valley, and it’s a religion, I mean, there’s no way around it. Being a transhumanist is a religious commitment, and these are folks that want to download their consciousness into some kind of mechanized apparatus, they think of the body as a death sentence, they think of the body as a prison, they want to transcend the body through technology and through psychopharmacology. They really see it as a blank slate, and their mission is to leave the body behind. They really do want to get rid of it. They think of embodiment as a curse, as a general matter. And that is as pure an expression of expressive individualism as you can imagine, but anybody whose will doesn’t correspond to their body and wants to change their body to conform to their will, is, again, as you point out, a reflection of a kind of expressive individualism.
Richard Reinsch (28:09):
Yeah, and I think behind that, too, is when I get this new body, I’ll be a new person. I think that’s also the implicit assumption. I’ll be a new person in the sense of I’ll have a new lease on happiness, which is also a part of this mindset. Question for you, the embodied disembodiedness, how would that change medical research? Have you thought about that? One critique is medical research moves very slow in this country because of bureaucracy and the development of new drugs, but how would experimentation happen?
Carter Snead (28:39):
There are different levels in which one could think about that question. I mean, if you think about the purposes of medical research, and how that might change if we really took seriously the vulnerability, mutual dependence and natural limits that are necessary entailments of an embodied community and people who are embodied selves, who encounter one another as bodies, you would be focusing more on those kinds of research projects that are aimed at responding to vulnerable others rather than trying to free people from their bodies or to help them to transcend their bodies through, and this is the old therapy versus enhancement, distinction and debate. How do you define… I mean, the purpose of medicine is to be in service of health, right?
And the nettlesome question, of course, which we dealt with in the President’s Council on Bioethics, back when I served with general counsel, Leon Kass, is how do we define health? Do we define health according to a baseline of normal flourishing or is health a function of desire? Is health a function of the subjective wishes of the person involved? And medical research is driven by markets obviously, and markets are driven by preferences. And if an entire culture or a segment of the culture that’s most wealthy, that are going to drive the revenues for drug companies and medical device companies, are focused on these interventions that are more in service of desire than they are to restoring persons to natural functioning, that could be something that would change if there was a shift in the direction of taking the body seriously.
And defining health in light of bodily flourishing is different than defining health in light of the wills and desires of a subjective individual. As far as research protections go, I think we would be more thoughtful about the principles that we use to craft protections for human subjects of research. I mean, human subjects, for those of you listeners who don’t follow these things closely, research involving human subjects is in fact a transaction in which a researcher is intentionally instrumentalizing a human being as an object for purposes of obtaining generalizable knowledge. That sounds like a bad thing. That was one of the initial sort of nesting places from which bioethics emerged.
How do we fix the potential for exploitation of human subjects in this context? Because the purpose of the researcher is not to help the human subject, that’s not the point, the point of the exercise is to obtain generalizable knowledge. If I oversee a clinical trial in which people get sick or get injured by the testing of a drug, that’s a successful trial. It’s not successful in terms of bringing that drug to market, but it’s successful in the sense that it’s obtained generalizable knowledge. We now know this drug is dangerous. And that’s good, it’s good that we learned that, unlike the clinical setting, where the doctor and the patient have the exact same purpose, that is to heal the patient or to ameliorate his or her symptoms. The interests of a person who enrolls in A clinical trial as a human subject, is the hope that A, you’re not in the control group, you’re in the group that gets the drug, and B, that the drug works and that you get some benefit from it. But that’s not the point of the protocol. I’m sure the researchers hope the same thing, they hope that the drug works, but that’s not their purpose.
So the way we’ve tried to salvage that circumstance of instrumentalization and potential exploitation is through the principle of informed consent. They say, “Well, we can transform this relationship of instrumentalization into one of collaboration where the subject agrees, makes a knowing, intelligent and voluntary agreement to participate, understanding the risks involved and the possibility they might not even get the drug that’s being tested. We try to save the situation that way.” But even with able-minded people, there’s risks of what’s called the therapeutic misconception, where people, because they’re so desperate and they want to be benefited by the drug so much that they actually convinced themselves that the researchers are their doctors. And in some cases, the researchers are their doctors, and they’re just operating in a different role, which makes it even more risky.
You have people being euthanized because… They don’t even have clinical depression, they’re just tired of living, so put that to the side. You have kids who have spina bifida and it’s treatable, and is not a fatal condition, and in fact, the fact that it’s not a fatal condition is treated by the authorities in these countries as an argument in favor of euthanasia, because their metric of suffering, because they’re not imminently dying, they’re not dying at all, is greater because they’re gonna have more years of suffering than a person who is dying in six months.
But forget that situation, imagine a scenario which the crucible from which public bioethics emerged in the first case, where human subjects are of a certain kind that don’t have the capacity for consent or they don’t have the full capacity for consent, because they’re unborn babies, because they are suffering from dementia, because they are intellectually impaired in some way, cognitively impaired in some way. That, if we took the body seriously, we would ask ourselves the question of how do we develop a framework for research ethics and protections that focuses on that population? They’re kind of an afterthought in our framework for human subjects protections. We focus on the able-minded people who can sign a consent form. And there are risks involved with those folks, and then we sort of say, “Well, for those other groups, we should act in their best interest and subject them to minimal risks.” And there are different concepts that people use, but it feels to me under-theorized. And I think that we could do a better job of reconstructing medical research in a way to think through how do we involve those folks in our research? Which we want to do, because that research benefits those populations without subjecting them to exploitation and abuse.
Richard Reinsch (33:36):
Okay, we’ll go to your heart issues here. Controversial questions, death and dying. Embodiedness, I presume, would be counter to the push for euthanasia throughout Europe, where it’s legal, where they even have suicide centers in Switzerland, I’ve read about these places where you go. But you would emphasize, I presume, the care and what comes about through walking with people through the late stages of life without killing them or creating this opportunity for them to kill themselves if they want to.
Carter Snead (34:10):
Yeah, no. That’s exactly my position. And my critique of… I focus on the American landscape in the book, although in the European situation it’s more advanced and more problematic.
Richard Reinsch (34:19):
But the Belgium situation seems to be it’s going beyond just consent, actively killing people.
Carter Snead (34:24):
That’s right. I mean, in Europe, we have circumstances where, in the name of compassion, we are seeking to euthanize, directly kill children who are not capable of even participating in an informed consent process. And it’s an injustice that these children can’t be dispatched, and the amazing thing is, you’ve got cases where spina bifida… And putting aside the psychological circumstances, you have people being euthanized for autism in certain parts of the world. You have people being euthanized because… They don’t even have clinical depression, they’re just tired of living, so put that to the side. You have kids who have spina bifida and it’s treatable, and is not a fatal condition, and in fact, the fact that it’s not a fatal condition is treated by the authorities in these countries as an argument in favor of euthanasia, because their metric of suffering, because they’re not imminently dying, they’re not dying at all, is greater because they’re gonna have more years of suffering than a person who is dying in six months. And it moves very, very quickly.
Once euthanasia is under discussion, talk about directed killing, nobody wants to commit suicide anymore themselves. They want to get an injection from their physician or whomever is going to dispatch them. And as you point out, we’re not just talking about voluntary euthanasia, we’re talking about non-voluntary euthanasia, meaning no request on behalf of the person who’s being euthanized to euthanize that person. And there are even reports of involuntary euthanasia, that is euthanasia over someone’s objections, or over the objections of someone’s parents. There’s the most famous example from a nun who said that she didn’t want to be euthanized, and I think this was in the Netherlands, it was written up in Herbert Hendin’s book, and I think Neil Gorsuch covered it in his book too, who said, “I don’t want to be euthanized.” But she was euthanized over her objections on the grounds that because she was religious, her grounds for opposing euthanasia were not rational.
Richard Reinsch (36:11):
Carter Snead (36:12):
That’s a sobering thing, but here in the United States, we’re not quite as advanced down that pathway. But the fundamental critique that I make is that both in the context of the law of end-of-life decision making, where we’re talking about the decision to discontinue life-sustaining measures, as well as assisted suicide in those 10, 11, 12 jurisdictions of the United States and allow assisted suicide. The problem again, is an anthropological problem, because in crafting the law of assisted suicide, and even to a certain extent crafting some of the laws connected to discontinuing life-sustaining measures, the underlying assumption about personhood and flourishing is this expressive individualism concept that human beings flourish when they are free, autonomous choosers, radically individuated and atomized, and the highest flourishing is the assertion of their unencumbered selves.
But that is not an accurate description, because of embodiment, and because of the impact embodiment has on a person as they’re dying, or even when they’re just very ill, or depressed, or what have you. That’s not an accurate sociological description of what it means to be sick. When a person is sick, and when a person is dependent upon life-sustaining measures, especially a person who has lost the capacity for cognitive decision-making, and that’s the example I talk about in the book regarding discontinuation of life-sustaining measures, people who are not capable of participating in decisions about their own care in the moment, because they’ve lost the capacity for making those choices. And in terms of assisted suicide, that’s not a fair description of who commits suicide and what a person needs under those circumstances.
The social science evidence is very clear, the vast majority of people who have suicidal ideation are suffering from treatable depression. That’s not an autonomous person, that’s not a person who’s operating at the height of their powers. A person who is unconscious and can’t make decisions on their own behalf is not an autonomous person, so why would you look to the anthropology of expressive individualism to craft remedies, the right to be left alone, the right to kill yourself, as the legal response to that human context? It’s a category mistake. Just take a generic case of a person going to the doctor because they’re sick. You don’t go to the doctor to assert your unencumbered will. You go to the doctor because you’re sick and you don’t know what to do and you want someone who has your best interest at heart to take care of you.
Richard Reinsch (38:26):
Yeah, I suppose too, here, it’s why does euthanasia moves so fast once it settles in, in law? And then, from what I’ve read, it’s they have this garden variety case. It’s your 90-year-old, terminally ill patient who doesn’t want to suffer anymore, and that’s kind of what we’re told. But it rapidly moves beyond that context to now, like the Netherlands children. I think I’ve read teenagers. It’s sort of this underlying dynamic we’ve been discussing that the expressive individual can’t really make sense of these lives, and why want to live them.
Carter Snead (38:55):
And quality of life, which becomes the grounds for euthanasia, a life that is dependent and diminished has no quality through the lens of expressive individualism. The greatest thing you can do when you’re faced with a life of dependency and decline is to author the conclusion of your own story by the assertion of your unencumbered will to choose self-annihilation. Again, that’s not a fully human account of those circumstances. That’s not what those patients want or need in most instances. Now, there may be occasions, there may be instances in which a person of wholly sound mind is facing a painful terminal illness, refractory pain, and they want to commit suicide there or they want to decline life-sustaining measures.
And I’m sure there are circumstances like that, but when we construct law and public policy, we don’t just think about those exceptional cases, we ask the question of what happens to those vulnerable communities who are subject to fraud, abuse, duress and mistake? Those elderly communities, the disabled communities, those minority communities who are already vulnerable. And now we open up the laws, you say, to allow this pathway for assisted suicide or even euthanasia. And all of a sudden, you’ve endangered an entire population of vulnerable people for the benefit of some very privileged folks who are a small sliver of the community that wants this legal change. And I’m sympathetic to those folks who want to change the law in that way in some respects, but we can’t change the law when doing so is going to endanger those people on the margins of our communities because of their disability, their age or even their racial status.
Which is why, interestingly, in the debates in America over things like Terri Schiavo, you may remember. And Terri Schiavo in 2005, the dispute over life-sustaining measures for a woman in persistent vegetative state in Florida. There was a massive expression of support on the part of the African American community and the Congressional Black Caucus in Congress. Jesse Jackson and others went down to Florida to argue against the doctors discontinuing her life-sustaining measures, joining Ralph Nader, by the way, Joe Lieberman, Tom Harkin, disability rights advocates. People forget that, they think it’s like a right wing, left wing, religious/secular thing. It’s not. There are actually communities, the disability rights community, even the American Medical Association, to their great credit, oppose assisted suicide, because they see system-wide consequences of opening that up as a pathway. And that’s, by the way, a huge distinction between the United States and Europe. In Europe, the physician professional societies support assisted suicide and euthanasia. In the United States, they don’t, and that’s the reason we have not gone, I think.
The main reason we haven’t gone in the direction, and you see in those states like California, where the local chapters of the AMA, like the California Medical Association, what they do is they declare a position of neutrality towards the state law proposed on assisted suicide, and then it passes. But in states like Massachusetts, in 2012, when they had the referendum, the Massachusetts Medical Association said, “No, this is not medicine. This is not the role of a doctor.” Ezekiel Emanuel wrote an op-ed to that effect.
Richard Reinsch (41:52):
Yeah. Assisted reproduction, how would embodiment interact here?
Carter Snead (41:57):
The framing of the legal question, the anthropology that animates the law, operates at the level of framing and then at the level of execution. So in the book, I provide a couple of quotes to give you a sense… So ART is interesting, because unlike abortion, which has been basically constitutionalized by the Supreme Court, any major changes in the law of abortion in the United States would require the Supreme Court to depart from, change direction from the trajectory established by Roe v. Wade and Planned Parenthood versus Casey. Assisted reproductive technology not been constitutionalized, and so there is room for the political branches to legislate, but the reality is they haven’t done it. It’s basically a wide open wild west in the United States in this area, and other than the restrictions of licensure and certification for physicians and the law of medical malpractice, there’s basically no oversight of assisted reproductive technologies.
And so you what you end up seeing is, no limits on the number of embryos that can be conceived and transferred. You have multiple gestations and multiple pregnancies, although that number is going down, thankfully. You have routine practice of sex selection in IVF clinics, they call it family balancing, but that’s an overwhelmingly widely practiced technique, an adjunct to IVF. You’ve got growing industries of people that want to screen embryos before implantation, that is in-vitro embryos, for non-medical traits, traits that relate to height, or IQ, or eye color, or skin tone, or hair. This is a growth industry, and the law at the moment says nothing about that. And again, I’m not making a comment on the attitudes of people who seek fertility treatment at all, I don’t think that those people are seeking to express their unencumbered wills. I think those people just want to be parents, and they want help from reproductive endocrinologists and fertility care doctors to help them realize the dream of becoming parents. But the law isn’t animated by that impulse, because if it was, the law would be shaped in a way that would take seriously the category of parenthood.
It would take seriously the notion that you can’t be a parent without a child, and that every stage of the process, the goal should be conception and birth of a child who is welcomed and loved unconditionally by her parents. The law is constructed rather, without any guardrails, which reflects the views of John Robertson, who was a recently deceased law professor from University of Texas who was instrumental in crafting the legal landscape in the United States, both in his role as a law professor, but also in his role on the many advisory committees on which he served over his long and illustrious career. And his role as the head of the Ethics Committee for the American Society for Reproductive Medicine, which is the most powerful lobbying organization in the country.
And I begin chapter four on assisted reproduction with the quote that says, “Reproductive technologies are means to achieve or avoid the reproductive experiences that are central to personal conceptions of meaning and identity.” That’s the vision of human identity and flourishing that animates the total absence and vacuum of law in the United States regarding assisted reproductive technologies. And we had a guy named Dr. Gerry Schatten, who at the time was a very prominent scientist at the University of Pittsburgh. I’m not sure where he is now, but he was very prominent, heavily involved in reproductive technologies, and especially genetic screening of in-vitro embryos. And we asked them, we said, “Come give us a talk, come give us some testimony before the President’s Council on bioethics. We’re focusing on assisted reproduction, and tell us in one or two sentences what you think the purposes of reproductive medicine are. What is the point of this exercise?” And he had six weeks to think about it. And he came back, and he gave us this quote, and it’s really quite arresting. December 13th 2002. He said, “Reproductive medicine is helping prospective parents to realize their own dreams for a disease-free legacy.”
Now, both of those quotes are clear that they are privileging and prioritizing the desires and the will of individuals who are seeking a very deep form of expression that is realized through participation in these reproductive technologies. The word that’s missing from both of those quotes, is the word child, is the word son or daughter. And that, to me, is a kind of evidence for the proposition that the anthropology that underlies that ideology, the anthropology that then animates the complete vacuum of law in the United States, is one of expressive individualism. It’s the idea that the whole point of this is to find your truth, to express your truth, whether that means being a parent or not being a parent, and it utterly misses the human context of how human beings come into the world. They come into the world situated in relationship to other people, relationships, biological relationships, and those relationships have unearned privileges and unchosen obligations, and that’s completely invisible. The word child doesn’t even appear in those quotes.
Richard Reinsch (46:54):
And that would largely seem, to my mind, to kind of come out of the jurisprudence of abortion in America.
Carter Snead (47:01):
You’re right, and the jurisprudence of abortion in America has influenced every other aspect of public bioethics, not just because of the politics of abortion, although that’s a hugely important piece of the puzzle. I remember very clearly back in the early 2000s, going with the chairman of the President’s Council on Bioethics to meet a prominent senator, a man of the left, who had previously authored consumer protection laws relating to assisted reproduction. And we asked him directly, said, “well, are you willing to augment those laws to provide additional protections for patients, additional protections focused on the health of children who are conceived with IVF, and focusing on the women who go through this process?” And he was very blunt. He said, “I can’t join a coalition that includes Sam Brownback, who was a prominent pro-life advocate. He’s like, “That’s too politically risky for me, I can’t do it.” I was surprised by how blunt and candid he was in that meeting. And so there’s obviously a brute political reality, but the deeper issue is that the concepts of privacy and liberty and now, equality, if you think about the sense of Ruth Bader Ginsburg and the partial birth abortion cases as the normative rationale for abortion, those rationales are in fact themselves rooted in expressive individualism. And those rationales are invoked, because of that, in the context of assisted suicide, embryo research, and elsewhere.
So you had this thing called The Philosopher’s Brief. And Washington v. Glucksberg, and Vacco v. Quill, which were the two assisted suicide cases before the Supreme Court in the mid ’90s. When people argued, and unsuccessfully, in a 9-0 rebuke, the court held that there is no constitutional right to assisted suicide, either in the due process clause or in the equal protection clause. And there was a famous brief, called The Philosopher’s Brief that was filed by some of the most famous philosophers living at the time, John Rawls, Nozick, Scanlon, Judith Jarvis Thomson, Ronald Dworkin, they all… And people who disagree with each other on important questions, all signed a brief saying, “If you take Planned Parenthood versus Casey seriously, and if you take the mystery of life passage from Anthony Kennedy, and you think seriously about the autonomy, freedom and self-determination that the court has enshrined and entrenched in that decision, then this is an easy case. Obviously, you have the right to assisted suicide, if that rendering of liberty is the legally operative rendering of liberty. And it was humiliating for those brilliant philosophers who published their brief in the New York Review of Books also, because that view was rejected nine to nothing by the US Supreme Court, but it nevertheless shows how potent and durable and widespread this anthropology of expressive individualism is across public bioethical contexts.
Richard Reinsch (49:37):
I think that’s an interesting way to wrap up, Carter. I think that really ties all this into a nice bow, as we think about public bioethics. Carter Snead, thank you so much for discussing with us, your new book, What it Means to Be Human.
Carter Snead (49:53):
It’s my pleasure. Thanks for having me.