EP72 Can Democratic Deliberation Help Us to Resolve Difficult Issues? A discussion with Dr. Amy Gutmann

Note: The I AM GPH podcast is produced by NYU GPH’s Office of Communications and Promotion. It is designed to be heard. If you are able, we encourage you to listen to the audio, which includes emphasis that may not be captured in text on the page. Transcripts are generated using a combination of software and human transcribers, and may contain errors. Please check the corresponding audio before quoting in print. Subscribe now on iTunes, Spotify, Google Play or Stitcher Radio.

I AM GPH EP72 Can Democratic Deliberation Help Us to Resolve Difficult Issues? A discussion with Dr. Amy Gutmann

EP72 Can Democratic Deliberation Help Us to Resolve Difficult Issues? A discussion with Dr. Amy Gutmann

Alexandra Arriaga: This episode of I AM GPH was recorded live at the 2019 William C. Stubing Memorial lecture, where we had the privilege of hosting Dr. Amy Gutmann, president of the University of Pennsylvania for a discussion called “Can Democratic Deliberation Help Us to Resolve Difficult Issues?: The Case of Physician Aid-in-Dying.” The conversation was moderated by Susan Dentzer, Senior Policy Fellow at the Duke -Margolis Center for Health Policy and former on-air health correspondent for PBS NewsHour. Special thanks to the Greenwall Foundation and the Center for Bioethics at the NYU College of Global Public Health for making this event possible.

Susan Dentzer: Good evening to all of you. It's really an honor to be here not only to be the enabler of this conversation with Amy Gutmann, but also, to be here to talk about such an important set of topics at such an important time. So, Amy, why don't we dig right in?

Amy Gutmann: Sure.

Susan Dentzer: So Bernie mentioned the title of this book, which really is a great book, Christmas gift giving, holiday gift giving for those of you who are interested. "Everybody Wants to Go to Heaven, But Nobody Wants to Die." Now, you could give that title to the entire US healthcare system, right? That's sort of the definition of our system. But why did you pick that title?

Amy Gutmann: Right. So first of all, before I say that. Just thank you, Susan, and thank you Greenwall Foundation and I couldn't be more honored than to be giving, having this conversation with Susan in honoring Bill Stubing, who really was ahead of his time in, really being supportive of funding of controversial conversations on really important issues and excellent research. So "Everybody Wants to Go to Heaven," "But Nobody Wants to Die." Actually can characterize as you suggest, American culture with regard to healthcare and probably a lot else, but certainly, we want it all. And we have a culture that pretty much tells us we can have it all until we try to get it and realize that some things are incredibly expensive, more expensive than we or our society can afford. And other things, actually some of the same things that are very expensive, are not very good for our health, right? And so it's also an American soul song. I recommend you all Google Albert King to hear him sing it, not me. But I think, as a good friend of mine, who's now the Dean of Penn Nursing said to me, "you're absolutely right, that's American culture. But everybody wants to go to heaven, and we're all going to die." So we ought to actually think about how we want to die, not whether we want to die.

Susan Dentzer: And of course, that whole question, how we want to die is really at the heart of the debate over physician assisted death. So let's turn to that now.

Amy Gutmann: So on my birthday, we're talking about physician assisted death. I just want to note that.

Susan Dentzer: Well it’ll just make you appreciate the day more.

Amy Gutmann: That's right. Just what I said, When I thought about, this is what I want to talk about, no we really should start there and perhaps we'll end some.

Susan Dentzer: On a brighter note.

Amy Gutmann: Right.

Susan Dentzer: So we know that we're all wired to remember stories. And so when we think about physician assisted dying, many of us go back to the story of Brittany Maynard, who had a physician assisted death in 2014. Tell us, give us a thumbnail description of that story and why it caused such a to do in effect and really culminated for many people that were brought together the main issues in the debate.

Amy Gutmann: Yeah, so Brittany Maynard was a very unusual person to bring forward this issue of physician assisted death because in the American public's mind, and quite famous were notorious characters like Jack Kevorkian, actually, the notorious character, right? Brittany Maynard broke all stereotypes of the kind of person who would want physician assisted death. But unlike a lot of anecdotal stories, and I'll tell the story very quickly, this one actually is, to my mind the paradigm case. 29 year old woman, graduate of the University of California, diagnosed with brain cancer, undergoes two surgeries and brain cancer comes back in the most aggressive form, glioblastoma multiforme. The only thing available to her was full brain radiation. She might indeed lose all aspects of her personality, have morphine resistant pain. She was offered hospice care, but she didn't want her dying days, literally her dying days to be one in which her persona was unrecognizable to those who loved her. She had just been married for two years. She lived in California. California would not allow her to get physician assisted death. So she took the extraordinary measures of not just moving to Oregon, but she had to establish residence there. Oregon had as of 1994. This was in 2014, as Susan mentioned. Oregon had the first physician assisted death with dignity laws. And she said, it was really she, months before she took her life with medicine prescribed by a very responsible physician, she went on TV, she wrote articles and said, "if anybody finds themselves walking in my shoes, I hope they have the same choice I had. Why should anyone else make this decision for me or any of you?" And she captured national imagination, I would say. I don't think any of us could have imagined a more appealing person to make the case for physician assisted death. And yet, it's still very controversial. But since then, California adopted it. Largely, the governor under the influence of Brittany Maynard, and all of... She made arguments that were publicly understandable, and resonated, really resonated.

Susan Dentzer: And what was fascinating as you point out in the book is everybody felt ownership of that story in some way. The Vatican, when she actually did die, said her death was reprehensible. Everybody felt free to comment on this in one way shape or another, which put this whole case into a very different realm. Then often bioethics issues land up.

Amy Gutmann: Right. This was an issue that you see it in a story of one person telling her own story. I think that was critical here that she could tell her own story. There was no doubt that she had the full possession of her faculties. There was also no doubt since she went through all of the health care scrutiny that needed to be gone through and still does in every state. Now, there are 10 states that have passed physician assisted death statutes. She was not depressed, she was not clinically depressed. This really captured the public imagination. The Vatican condemned it. It's still extremely controversial, however, it is... the vast majority of Americans support it, and thoughtfully. One thing you can't, it's really interesting. There are some really as you know, Susan, there are some debates in this country, including some around this, in which the arguments are kind of sound bite extreme. Nobody could criticize Brittany Maynard for other than making a thoughtful argument she pulled on our heartstrings. But she also appealed to our reason, which to me, is the ideal person for making the case even if you disagree with her. She was passionate, but extremely thoughtful.

Susan Dentzer: So now we have this patchwork.

Amy Gutmann: Yes.

Susan Dentzer: Now in this country where 10 states as you say, allow physician assisted death, the rest don't. What does that say about us as a nation?

Amy Gutmann: Well, it says where we have a federal system of government in case you haven't noticed.

Susan Dentzer: Right.

Amy Gutmann: And the pluses and minuses of that I think are worth saying in this case. The plus is, if it were up to the federal government to pass this, we wouldn't see it. Now, it would be absolutely prohibited if it were up to the federal government. So now there are 10 states when Brittany Maynard was alive, there was Oregon. Most recently New Jersey, so and the states across the country. I don't think there's any southern state, but there's midwestern- Colorado, has it. So western, okay. If you survey continually public opinion, whether the public, whether you call it physician assisted death or physician assisted suicide, so it's so controversial that we can't even agree on the name, right? But even if you call it physician assisted suicide, a majority, it's a smaller majority, but a majority of Americans support it. So what it says? So the upside is it allows experiments. I don't mean experiments that are unethical experiments, although the critics would say they're unethical. But the same critics, a lot of the same critics who would say it should be prohibited, a lot of those same critics would favor states deciding abortion rights for women. Let me just say, so not consistent there.

Susan Dentzer: Right. As you say, this case, like so many bioethical issues, is really around competing values.

Amy Gutmann: Yeah.

Susan Dentzer: One set of values competing with another set. Walk us through how this debate has evolved in this country. As you said, this isn't the first physician assisted dying episode. We've lived through Kevorkian having been one of the more infamous earlier ones.

Amy Gutmann: So if you want the worst case scenario for physician assisted death, you look to Jack Kevorkian, and that's basically the first that got huge publicity. The Hemlock Society proceeded that... I'm a political philosopher. You have to go back a long way. You can't just start in the 1960s. Socrates took his own life, right? Socrates decided that he was sentenced to death and to show that he was a person of conviction. Now, this is according to Plato, but it's certainly captured even more of the imagination than any American. Socrates decided that he would take hemlock and show that he was a loyal citizen. And he would accept the death sentence but he would do it on his own terms. Now no physician would prescribe hemlock; it's a very painful way of dying. So physician assisted death is much preferable to swallowing hemlock. Kevorkian, however I think many of you probably know the story of Kevorkian, but he came to a head when he agreed to have 60 minutes film, his giving, he had this thing called a thanatron. to a 52 year old man Thomas Uke, it was the equivalent of basically walking into a room to a stranger, asking the stranger do you want to die now and administering death to the stranger. He was convicted of I think it was secondary manslaughter, but he served eight years in prison for it after that 60 minutes episode. He was a cult figure. I mean, I must say as somebody who actually thinks under the right constraints as Brittany Maynard as Oregon and California, now New Jersey have, I support physician assisted death. Jack Kevorkian is a nightmare scenario. Actually shows how important it is to get the really important details, right. I mean, this is human life and to die with dignity requires a certain set of very important steps to take.

Susan Dentzer: Including dignity.

Amy Gutmann: Including right, which Kevorkian violated. Kevorkian, by the way was on record as saying, what are the great things about what he was doing is it would if it spread, it would allow experimentation on people in bed, their cadavers would be in better state. So, it's a truly terrible way to have people dying, and it actually underscores how important true informed consent is. But then you get Brittany Maynard, and there's still controversy, as you say, between those who think that a very, a person I enormously admire who was on President Obama's Bioethics Commission with me is Dansyl Macy, and he opposes it. He thinks that the right form of dignity is intrinsic dignity, which means that you cannot ethically will to become a nobody from a somebody. We think, as Brittany Maynard did, that dignity and that death with dignity laws underscore that everybody has the last act in life. And if you are, you know with reasonable certainty that you're soon going to die, and you know that you're going to suffer damages to your very identity, taking the last act in your hands with the aid of a physician who gives you a safe drug is a perfectly reasonable way to have your last act.

Susan Dentzer: So to put this discussion that we've had here in the US in the global context, we know that other countries have gone even farther down the road, the Netherlands in particular, on basically carrying it forward to euthanasia. We're not there in this country yet. Why do you think there's a difference?

Amy Gutmann: I think we're very... I actually think one of the things that I really admire about our culture, one of the many things I admire, is that we're very careful about making sure that individuals are the authors of their own actions and going so far as to have active euthanasia is.

Susan Dentzer: Somebody else making the decision.

Amy Gutmann: Is risky. Somebody else may be making that decision, even though the Netherlands has safeguards. I think the other reason and I don't know, how many of you are doctors here or there, right? I think the other reason is the medical community in the United States has been, and still is opposed to physician assisted death. So, not all, but the AMA still opposes it. The American College of Physicians which I have one Michael and I, my husband's here today, Michael and I have a wonderful doctor who is the president of the American Council of Physicians a couple of years ago when they issued this report, which was very thoughtful and had multiple opinions in it, but came and reaffirmed their proposition to it. The American Council of Students, and the Women's Association of Doctors, they're in favor of it, but I think that's one of the reasons our country has been slow is the combination of taking autonomy extremely seriously, which I think is great and the resistance of doctors which in this case is totally understandable, although the same doctors who oppose it. Many of the same doctors who oppose it would like it for themselves, would like to have access to it for themselves, but there's a worry that it will destroy the doctor-patient relationship. I think quite the contrary, given how many people want to be able to consider it, it may destroy the doctor-patient relationships for doctors not to be willing to discuss it with their patients.

Susan Dentzer: And there's also this-

Amy Gutmann: If the patients bring it up.

Susan Dentzer: There's also the slippery slope fear, right?

Amy Gutmann: Yes.

Susan Dentzer: Is exactly behind a lot of the opposition from the medical profession.

Amy Gutmann: Yes, the slippery slope is that if doctors do this, I think they there's also a worry that they may find themselves liable for taking somebody's life wrongly. George Will wrote a wonderful column on this. George Will who is on record as really caring about the sanctity of life. He said "slippery slope arguments are themselves slippery." Just because we have education, and it could lead to indoctrination. Do you think we shouldn't have education? the slippery slope argument goes, If the desirable thing X may lead to the undesirable thing Y, you shouldn't do X because it may lead to Y. And the problem with that is you don't have police because it could lead to extermination.

Susan Dentzer: Police brutality.

Amy Gutmann: You don't education because it can lead to indoctrination and so on. So I think slippery slope arguments are really usually not good arguments. You can make them into a good argument if you can actually show that X will lead to Y and show that Y is sufficiently bad that you shouldn't do X. So what does that mean? It means that you have to show physician assisted death will lead to vulnerable people having their lives taken from them. Well, number one, it's the most affluent people who choose physician assisted death. It could lead to a breakdown in the physician patient relationship. But most patients want to be able to talk to their physicians about this. And then I suppose, what would be the last thing it could lead to pressure on physicians to do something that they don't wanna do and every law, every state that has passed it has an exemption for physicians who don't want to administer it.

Susan Dentzer: A conscience clause, in effect.

Amy Gutmann: Conscience, yeah.

Susan Dentzer: So you in the book, you and your coauthor, talk about how this is a perfect issue for democratic deliberation. Talk about how you define democratic deliberation, and why you think these kinds of issues lend themselves to that way of working out how we're going to feel about these issues, and how we're gonna act, how we're gonna set laws accordingly.

Amy Gutmann: Yeah. So democratic deliberation is, two big words that basically mean when we're taking into consideration law, public policy or something that affects many people, we would do well to have reasoned discussion and come to some conclusion that is mutually justifiable. We can actually give reasons to one another. And if we can't come to an agreement. The thing about democratic deliberation is it shows respect for other people's point of view, we take it into account. We economize on our disagreement, if you will.

Susan Dentzer: So this is a real old fashioned concept.

Amy Gutmann: Yes, it goes way back to Kings deliberating not democratically but having their counselors deliberate and democracy brings it into the open. So it should be, to be democratic, it should be open and transparent.

Susan Dentzer: In the bookend to democratic liberation, your book is classical conservatism. So talk about what's that bookend?

Amy Gutmann: Right. So we talked about two procedural ways of going forward under controversy, one's democratic deliberation, which we just discussed, or at least defined, and the other is classian, burkean conservatism, you will most identify with the New York Times columnist David Brooks, if you haven't read Edmund Burke, but he self identifies as a classic conservative and classic conservatism basically says that human beings have imperfect reason. Which is true. I mean, I think that the premises of classic conservatism are correct. And if the conclusion is that we should be very wary of wholesale radical changes, because they're likely to bring a lot of unintended, bad unintended effects, and to believe in them, courts a kind of fanaticism that will come to no good, mind you Burke supported the American Revolution over the French, not the French Revolution because he thought the American Revolution, he was consistent. He thought the American Revolution did not instantiate a radical new idea. What the Americans were doing, they were British colonists, was really taking the British ideals, their values of liberty and freedom from oppression and just applying them to the colonies under an oppressive king. And so I have a lot of respect, I think we all should for classic conservatism. It actually, interestingly, in the case of physician assisted death, could come to this as George Will did, come to the same conclusion as deliberative democracy.

Susan Dentzer: Which is basically that this is okay, in this constrained-

Amy Gutmann: We should do it slowly. I mean, we should do it carefully. We shouldn't have, say, everybody is free to do whatever they want at the end of their life, but have really constrained, very careful laws that are passed state by state that fits all of the criteria of classical conservatism, even though you don't think about physician assisted death as a kind of conservative position. But in fact, it fits all the norms of classical conservatism. And one of the great things about democratic deliberation is when you can talk about that in a group and openly as in a Presidential Commission where all of our deliberations are in public, you can actually have a meeting of the minds.

Susan Dentzer: So another issue that you identify in the book that did get at least a form of democratic deliberation, notwithstanding the outcome was the Right to Try legislation, which as you say, is a real misnomer. We can talk more about why that is so, but this Right to Trial legislation which would in effect, does in effect, now allow people to petition drug manufacturers for use of experimental drugs that have not yet been approved by the Food and Drug Administration. Give us your analysis of the democratic deliberation we went through as a country to enact that law at the federal level, as we did.

Amy Gutmann: Yeah. So one of the things that we show in the book, as you know, Susan, is how far we've come from doctor knows best medicine, right? To patient-centered medicine. I grew up in the doctor knows best era and I still remember my pediatrician carrying that classic black bag, which I liked. He actually was responsible, my pediatrician, for advising me where to go to college. So I owe him a lot.

Susan Dentzer: He did the best.

Amy Gutmann: My parents had never gone to college. They knew nothing. I knew nothing. And so he became a mentor. But those black bag toting physicians a la "Father Knows Best." Robert Young played Marcus Welby, MD, and they knew everything. They were portrayed in popular culture as not just medical experts, but moral experts. So what we like to say is that doctors are medical experts, but they're not moral experts. They're not experts in us, which is partly why we all should be. We think we all should be bioethicists. I mean, there is a specialty of bioethics. But again, bioethicists aren't moral experts either- we study it, we write about it. So here's the thing. It's really important to- I forgot your question actually.

Susan Dentzer: The Right to Try.

Amy Gutmann: The Right to Try, here this I know it now, the right. So here's the thing. The Right to Try. Unlike Brittany Maynard, Brittany made it accepted doctors as being medical experts. So she wasn't gonna take hemlock. She was gonna ask a doctor for what was safe to take to give her a painless death, right?

Susan Dentzer: Right.

Amy Gutmann: Right to Try patients want to try experimental treatments before they've been approved to be for use, and then misnomer about Right to Try which is what you also what you asked. The misnomer is drug companies do not have to allow patients to take those drugs, and guess what? Drug companies don't allow patients to take them because they don't want to be sued for giving out dangerous drugs that have not been tested. So the Right to Try has gone through this democratic deliberation, which is pretty, not because it's ended where I disagree with, but nobody is sort of willing to say, look, patient-centered medicine is great if what you're getting is good medicine. But we shouldn't say to pharmaceutical companies or to doctors, that you can prescribe things that are literally untested.

Susan Dentzer: And you have this great phrase in the book about how we have gone in this country from being patients to now becoming self-authorizing consumers...

Amy Gutmann: Right.

Susan Dentzer: ...of health care, we decide that we are entitled to take this drug before it's been approved. So?

Amy Gutmann: So most people want... There's something that I think we all should take to heart, which is people who are desperate for something to save their lives. It's really important that we've passed through the FDA easier ways of getting drugs that are tested, approved. And that's only been in the last decade basically, that that's happened. When we're desperate and we all have, not either have been or know people who are the idea of just giving people things that aren't legit medicines doesn't make a lot of sense.

Susan Dentzer: There were a lot of stories though that tugged at the heartstrings in the same way as Brittany Maynard's story. They're ALS patients who had nothing left, nothing reasonable in the pipeline to treat them, who made very powerful and persuasive cases that they should be able to decide just the same way Brittany Maynard was.

Amy Gutmann: And they should be able to decide, but just as physician assisted death doesn't require physicians to actually prescribe, so Right to Try doesn't require drug companies to give drugs that haven't been tested. And unlike Brittany Maynard, who is not asking for something that's untested, but asking for something that's tested, the Right to Try is going a step beyond what we can defend medically. And, the right answer there, I believe, which is what we actually instituted in this country, which is fast-tracking experimental drugs through the FDA. The Right to Try, we just have to realize democratic deliberation, of course doesn't always come to the right answer. But the right to try is a deceptive term. Because we don't actually give people on their deathbeds the Right to Try anything they want.

Susan Dentzer: It's the Right to Ask, to decide.

Amy Gutmann: It's the Right to Ask.

Susan Dentzer: It's the right to manufacture.

Amy Gutmann: And I think that's a fair right, the Right to Ask. But I also think, responsible manufacturers of drugs don't want to ultimately be accused of being the equivalent of snake oil sales people, right?

Susan Dentzer: Right. So let's talk about another group of self-authorizing consumers and that's the anti-vaccine movement.

Amy Gutmann: Okay? We're doing all these light topics tonight, right?

Susan Dentzer: So once again.

Amy Gutmann: Yes.

Susan Dentzer: Similar stories here, celebrities who got deeply involved in this, Jenny McCarthy famously pronounced that her child's autism had been caused by vaccination. We know how that belief has spread throughout the world, even though all of that evidence, there's no evidence, I should say that that is the case. How do you parse this particular debate, particularly putting it together with this notion of democratic deliberation, which we really arguably haven't had in the case of the anti-vaccine movement?

Amy Gutmann: Yeah. The anti-vaccine movement is a great example. So we talked about the paradigm case of Brittany Maynard, which I think is a paradigm positive case of democratic deliberation. It's happened at every level. It happens now and it should happen more in families, it happens at the state level, it happens on commissions, all over, and it should happen more. And by the way, just footnote to that, we should have more democratic deliberation about palliative and hospice care, too. But this is the kind of negative paradigm. So, how the anti-vaccine movement got off. So here's the negative paradigm which actually proves the importance of democratic deliberation. What is the single most damaging article that an academic medical journal has ever published? In Lancet by Andrew Wakefield, showing the relationship between autism and vaccines by purportedly, looking at 12 parents. It turned out not only was it terribly scientific, it wasn't science it was unscientific, but it was a fraudulent article and he actually had an interest in, it was against the MMR vaccine. He had an interest in, a financial interest in, a vaccine just for measles. So he wanted to show that the MMR vaccine caused autism. He actually didn't say that in the article, but he produced... it implied that in the article, and then he produced a video which actually said it. It took years before an enterprising journalist discovered it was a fraud. By that time, it had gone viral, and the anti-vaccine movement was off and running, violating the first premise of democratic deliberation, which is you got to get your facts straight, right? And you can't be a fraud. And so Lancet retracted the article, but by that time, it was too late, and it was often running. Now in the climate we have where there are these social media bubbles, they just feed the anti-vaccine movement. And we’re digging ourselves out of a deep hole at the cost of countless lives.

Susan Dentzer: Behind that--

Amy Gutmann: Other than that, it was fine, right? And actually, go ahead.

Susan Dentzer: No, you go,

Amy Gutmann: Well, actually, the bright light here recently is by bringing to light again journalists bring to light these outbreaks of the measles and it's not just, I mean, measles, by and large, don't kill, but there is a percentage of young people and old people get measles who do die because of complications of pneumonia, and so on. But the anti-vaccine movement has spread to other things. Like smallpox, I mean things polio, polio was once eradicated, and now it's back. So, the positive side of this is by exposing all of this, some states have now taken away the exemptions. The easy exemptions of parents exempting their children on very easy grounds from getting vaccinated. This is a public health issue. There ought to be very tough rules for exemption. You need herd immunity, so you can exempt a small proportion of children. But the anti-Vax movement has gone way too far. And it's being pulled back now again, through democratic deliberation, which is hindered by the ability of social media basically to put some people into ideological bubbles where they simply don't listen to what the counter case is.

Susan Dentzer: And on top of that the sentiments take root in an environment that has suspicion against scientists, against experts of any sort. It's the other side of the pendulum of the doctor knows best, is the experts don't know what they're talking about.

Amy Gutmann: Yes, and again, one of the things we go through in the book, which is really important for us to recognize is there are good reasons for people to be suspicious of what doctors can do, the bad that doctors can do. I mean, there's, I just have to say the word Tuskegee and everybody will understand. Tuskegee is not ancient history. Tuskegee happened...

Susan Dentzer: Within our lifetimes.

Amy Gutmann: ...within our lifetimes, not within Michelle's lifetime, who was also with me on the President's Commission, but within some of our lifetimes, Tuskegee happened and there's Willowbrook and there are many other examples. So if you're in an ideological bubble, which is that all you read about, it's easy to be quite reasonably skeptical.

Susan Dentzer: So one of the other topics you take up on the book is the drive to universal coverage, which as we know, in this country has been a very, very long struggle. And most recently, in spite of the enactment of the Affordable Care Act, it looks like we're retrenching, it looks like we have rising numbers of uninsured people now, not the opposite. One of the points you make in the book is that for universal coverage to really be a moral promise, it also has to apply to a sustainable financial system, you can't promise universal access to something that we cannot afford to sustain. So that gets us to the current discussion we're having about proposals like Medicare for All, for example, give us your bioethics analysis of those avenues of getting to universal coverage.

Amy Gutmann: So, first of all, I think it's really important that bioethics take on the question of distributive justice in health care. And I think traditionally, bioethics has focused much more on the micro, if you will, than the big issues of how we distribute access to health care. So I think it's super important that we all think about what are the values we bring to the distribution of healthcare and so, if you care about everybody. If you think that healthcare is a right, or if you think that healthcare, we're obligated as a society. So some people think in terms of rights, that everybody has a right to health care. Why? Because, if we don't have health care when we need it, if we don't have the health care we need, we can't do anything else in life. I mean, you and I, and everybody here wouldn't be here right now, if we were suffering so much, and we didn't have access to health care. Or, alternatively, some people prefer to think in terms of the obligations of society to care for other people. And if you think about that, we certainly also have an obligation as a society to care for people. In order to do that, as you said, we have to afford to do it. And the problem in our society right now is we have in some sense, the worst of both worlds, we don't cover everybody. So we don't have universal insurance, you realize we're the only advanced industrial society that doesn't have universal insurance. And we put virtually no limits on what the government is willing to pay in insurance costs for those people who are uninsured. So that's a bad situation, and it leads to bad results. Actual infant mortality in this country is higher than most other industrial countries. And our life expectancy, which is shocking, is going down rather than up. So bad situation, right? From any ethical principles you throw out there, it's bad. Even libertarians who may not think that. So if you're a Hayekian libertarian, Hayek is probably the most famous libertarian of the 20th century, then you actually think that healthcare it's an obligation of society because Hayek wrote, even though he was against John Rawl's theory of justice, he said, "libertarians should not be extreme in that all libertarians should support the kind of social welfare that people won't exploit." If you give people health care, he said "they're still gonna work." I mean, it's not that it's undermining the libertarian principle. So basically, unless you're, a Bob Nozick kind of, I'm talking political philosophy here now. If you're a Bob Nozick kind of libertarian who really thinks that nobody owes anything, anything except for just to be free to do whatever you want. You're gonna support health care in this country in a way that we do not now provide it, which is universal healthcare, and allow the government or insurance companies, in this case, the largest provider being Medicare, to negotiate prices, on the basis of the effectiveness of treatments. It's pretty simple intellectually. And it's extraordinarily difficult politically.

Susan Dentzer: So if we imagine that we're going to go through a period of democratic deliberation over the next year and beyond, on this issue, and maybe keep in mind that other bookend classical conservatism, what would be your prescription for how we should come out?

Amy Gutmann: Yeah. So here's a realistic optimistic scenario. If you go back in the history of the US, major health care reform has failed more often than it succeeded. Once it succeeds, and what I mean by that, almost every president has tried it. And LBJ got it through, right? And Medicare and Medicaid were enormously controversial. The AMA said it was a communist plot. That was it, they really did. And now try to... The people who were opposing the Affordable Care Act, some of them had placards that said, don't let the government take away my Medicare, right? So Medicare is now one of the third rails of American politics. The Affordable Care Act was enormously unpopular except among one party, and even there, it was just scraped by.

Susan Dentzer: Until people tried to kill it. Now the popularity is rising.

Amy Gutmann: There you go.

Susan Dentzer: Right?

Amy Gutmann: Now, try to kill it, in fact, try to kill it. Repeal and replace didn't work and Medicare for All I would, which I am not opposed to let me just say, but let me just say that running on Medicare for All as in if I become president, I am going to replace 150 million Americans’ private insurance with a government-run single-payer system is probably not a winning argument. And Elizabeth Warren is shifting you see into something- eventually Medicare for All, but first, more gradual. So you asked about classical conservatism. I think classical conservatism gets, it's classical conservatism I object to when there is a blatant, horribly long, systemic, for example, racism in our country and you say we have to go slowly, no. Or "Don't Ask, Don't Tell", for example. But when you have, when you've moved to covering 90% of the American public, and what you need is to cover the other 10% plus start negotiating prices, classical conservatism was pretty darn sensible. It would tell you that to win in this among the American people, and now we're from ethics to politics, but they intertwine because what we want is for the American people to get what they need and healthcare on what they want. You don't need to leap to Medicare for All. You could have what we said in the New York Times op-ed, you could revise and reinforce the Affordable Care Act, and you could authorize Medicare to negotiate prices.

Susan Dentzer: So I think we're ready to take some questions from the audience. I've seen that...

Amy Gutmann: Absolutely.

Susan Dentzer: ...many people scribbling them, so we'll go ahead and collect some of those in a moment. While we're waiting--

Amy Gutmann: We can do lightning round.

Susan Dentzer: Okay, great. Thank you. And some brave people actually, signed--

Amy Gutmann: While we're doing it, I have to do a shoutout: my dean of the Dental School, Mark Wolff, used to be at NYU. I have to thank NYU for allowing Mark to come to Penn. So thank you, and Mark come back. He has loads of friends here. Yes.

Susan Dentzer: So here is a question from a Penn parent.

Amy Gutmann: Okay.

Susan Dentzer: How can democratic deliberation overcome social media bubbles, which we've talked about, that disseminate non-facts to audiences that do not examine them critically. Or I can't make out this word. It looks like “contravene” of their own interpretation. So we talked a bit about this.

Amy Gutmann: Right.

Susan Dentzer: But what do we do? Because this problem is only getting worse.

Amy Gutmann: Yeah. And I'll try to be brief so we can get through a lot of questions. I think education is really key. I mean, I think we just have to educate, I feel very responsible, as President of Penn, to really find multiple ways to expose our students to views that they disagree with. And so that's why, we're actually creating a program to do that called Paideia: The Education of the Whole Person, but I think education is absolutely key there, because social media is not gonna go away and you can't force people once they're, adults to read and view things they don't want to. so I think education is really key.

Susan Dentzer: And in a country where fewer people are going to college now, which appears to be the case.

Amy Gutmann: We have to make access. It's another passion of mine, Susan, access to education. We have to enable more students to be able to afford college. But also we have to start that in the K through 12. I mean, I think it's too late. You have to do it in higher education anyway, but you really wanna start... civics education is really neglected in this country. And the No Child Left Behind implicitly neglected it even more because it's math, science, language. And those are tested, and civics has gone by the board. So, revive civic education. That would be number one on my list. 

Susan Dentzer: So we have a question from none other than Chris Cassel, Greenwall Foundation...

Amy Gutmann: Where's Chris?

Susan Dentzer: ...board member, who asks, how could democratic deliberation resolve issues of privacy and big data in an era of artificial intelligence? Who needs to be involved in that discussion? And what does consent mean in this context...

Amy Gutmann: Right.

Susan Dentzer: ...where you're being stalked by Facebook everyday of your life or Google.

Amy Gutmann: Yeah, I think democratic deliberation is incredibly important in an era of big data. Because once you log on, whether it's Google or Apple or whatever, and there's a consent form that goes on and on, nobody wants to take the time...

Susan Dentzer: To read it.

Amy Gutmann: ...to read it, and it's too late once that is because you can't live without these search engines now. And big data is really important for medical discoveries as well. So I think we have to actually have open deliberations and I think we should have commissions on this where we really figure out what the social contract is between the American public and all of these different kinds of search engines.

Susan Dentzer: So here's a question that builds a bit on what we've talked about already from Joseph Fins from the Weill Cornell Medical School and Yale Law School. So he asks you as an educator, what are your thoughts about scientific literacy, the limits of uninformed autonomy, especially among the self-authorizing consumers, and the role of the Academy to educate and train our citizenry to make these difficult choices.

Amy Gutmann: Right. So, it's really important that science and ethics partner together which means that we need not only ethical literacy, but scientific literacy. So when you see how far behind our country is in educating young people in science, that's disturbing. Part of the way we wrote this book was to write the book to show how important understanding certain basic facts about our lives is. And that's not ethics, that's science. So much of the unethical behavior of scientists has been both bad science and bad ethics. So we've got to do better on science education. How do we do that? I think you have to make science and ethics both at the younger levels fun, I think, there's a new kind of relatively new Ethics Bowl where teens compete on ethical issues. You could do that with science and ethics together. I would love to see from the very beginning that we teach science in a way that you give students the stories of how science really made a huge difference in people's lives.

Susan Denzter: Be a great new show on PBS.

Amy Gutmann: Right, that's right. It would be.

Susan Dentzer: So we have a couple questions on physician assisted death and dying, one from NYU Bioethics, which says, you mentioned that it is the most affluent people who choose physician assisted death, aside from issues of access to PAD. Let's see here, are there factors that we might take into consideration for non affluent populations, how should we think about the impact of poverty, inability to cover healthcare costs, et cetera. On populations who might...

Amy Gutmann: Yeah.

Susan Dentzer: ...in a different world want access to PAD.

Amy Gutmann: Right. So the real concern among critics of PAD is that it is exploiting poor people that PAD would be used because it often saves money to take your life earlier, right? If you have six months left in your life and you would rather end it before you deteriorate into a terrible state, you're gonna save money, and the critics were worried that most people who use PAD would be persuaded by their families or physicians because they were poor and couldn't afford it. So it actually is less of a worry than a relief that PAD is more used by affluent, highly educated people than less educated, less affluent people. However, access is an issue for everything in health care to poor people. I mean poor people in this country, poor people and minorities are, when that overlaps have the least access to excellent health care and the least access to the decisions. I would say, access to palliative care and hospice care, as well as physician assisted death, which is the third being used by a tiny fraction of the people who could use palliative care and hospice care. The knowledge of it and the funding of it, and the access of it is scandalously bad for low income Americans. And that by the way, we now after all the death panel arguments against advising patients paying to advise patients on end of life care that actually came administratively. It's now been passed. There's been progress made. So now Medicare and Medicaid actually do pay for physicians to advise all patients on end of life care. So that's actually quite a bit of progress. And we need just universal coverage, hospice care, palliative care and physician assisted death are all ethical, put the physician assisted death apart as being controversial but a majority and we think it's ethical, the other is obviously ethical and also saves money.

Susan Dentzer: So one last question on physician assisted death. This is from Robert Gufill I'm sorry, if I'm mispronouncing your name. Many derive their sense of right and wrong from their religious traditions are their religious bodies within either Judaism or Protestantism that have taken positions, excuse me on physician assisted death, and if so, what have they said?

Amy Gutmann: Yeah. Well, the Catholic Church opposes it. I'm not aware of whether other religious bodies have come out one way or the other. Although I wouldn't be surprised if they have, I’m just not aware of it. But, I don't think there's another major religious body who's taken the position that the Catholic, I think, the double effect doctrine which comes out of Catholic theology, and is, I think, a very excellent doctrine when applied to rules of war, I think doesn't apply well in physician assisted death because it's the person themselves. We don't have time to go into the double effect doctrine, but that's what leads the Catholic Church to oppose physician assisted death. I don't know of other religious organizations who have taken a position. But now every poll of the American public has such a large proportion of Americans in favor of it that it's unlikely that there are many major religious bodies who are opposing it.

Susan Dentzer: So we know we have a lot of bioethical issues ahead of us to deal with. Chris has brought to the table artificial intelligence. We know we've got gene editing technologies now which could basically pose a number of very important ethics issues. If there is to be another Presidential Bioethics Commission. We think there's still one in existence, right? What advice would you give the next Head of the Bioethics Commission as these other issues lean to the floor.

Amy Gutmann: So there's right now no National Bioethics Commission. You can figure out why. And I'm not advising that there be one right now. But I think on the issues of gene editing and CRISPR are ripe for Bioethics Commission, the scientific community rose to, so CRISPR is, has the ability to edit genes in a very precise way. And this has great potential for eradicating some genetic diseases, those genetic diseases that you can actually pinpoint very few genes and do see whether and figure out how safe it would be. The problem with CRISPR as a form of gene editing or all gene editing, but CRISPR is now at the forefront of it, is that if you edit a germline cell the changes are inheritable. And unlike mosquitoes that propagate very quickly, and we can see what would happen very quickly, we wouldn't know the effects of that on human beings for generations, and the principle of being responsible stewardship of beneficence or non-maleficence to future generations, really says do not do germline editing at this point. We don't know enough, and it's too dangerous, right? The risks are too great. The scientific community worldwide has basically reached a consensus on this. But that consensus is gonna be pushed as CRISPR becomes more and more technically proficient and you'll know that there was a Chinese scientist who violated that consensus. And the scientific community came down hard against it and the government of China came down hard against it. Can you avoid renegades? No, but you can have democratic deliberation. We should have a commission that really has scientists on it. And also members of the public and people expert like Chris Dean in bioethics and Bernie and, the people in this room who really take this seriously, we really need to be following this. The science is moving quickly. The science has to partner with ethics before we have something that goes seriously awry.

Susan Dentzer: Well, Amy, given all of the scary things we have ahead of us in the ethical and bioethics world we want to thank you for guiding us so clearly and straightforwardly through these, excuse me, ethical quagmires that you summarize in such a lovely way in your book and will continue to do for so many students at Penn and beyond. I think we owe you since we have dragged you through a lot of hairy issues in the last hour, so I think we owe you a round of “happy birthday” to cheer her up.

Amy Gutmann: Oh no.

Susan Dentzer: Let's go. ♪ Happy birthday to you ♪ ♪ Happy birthday to you ♪ ♪ Happy birthday dear Amy ♪ ♪ Happy birthday to you ♪

Amy Gutmann: Wow. So thank you Susan. I can truly say I will remember this forever. This may be a first. So thank you all. And I do think that the quagmires are intellectually fun to talk about in public. And I do think we've made enormous progress because of bioethics in our time, it's one of the great success stories. The problems will just get thornier because we've solved the easy ones. So there are only the hard ones left. So thank you all. So very, very much. Thank you.