 What makes ethical medicine so complicated is, I think, of almost all the things humans do. The urge to take care of the sick, to treat the sick, to heal the ill when we can, is one of our deepest, most basic moral urges. You see it in the religious traditions all over the world. We've all been sick, we've all known people who are sick, and that human sense of needing to care for them puts a strong moral positive note on anything we can do in medicine to make people better. And yet, as in everything in life, there have to be limits. Someone told me a hypothetical, I thought, illustrated that interestingly. Let's say you're in a hospital, you run a hospital, you have six patients. Two need kidney transplants, one needs a liver transplant, one needs a heart transplant, one needs lung transplants, one needs bone marrow transplants. They're all going to die soon if they don't get the transplants. And an otherwise healthy young person walks in with a broken arm, who happens to be a perfect donor for all six of those. You could kill that person and save six lives. We won't do that, at least not yet. So there are moral limits, even on the very strong moral drive for health. Some of these questions are very old and have not been solved to everyone's satisfaction. Questions of, say, rationing scarce resources, questions of organ transplantation, questions of the beginnings of life and the ends of life have been with us for thousands of years. They're with us in somewhat different guises today, but we haven't solved them. But modern bioscience is introducing new questions, questions along the lines of, should we do genomic editing of humans? And if so, under what conditions and what circumstances? What do we think about growing human organs in non-human animals for transplant into humans? These and other questions have arisen as a result of biological advances, and the biological sciences are not slowing down. They're only going to present us with more dilemmas. We have approximately an hour. I can promise you that we're not going to solve any of them. We're not even going to get a very good start on any of them, but I hope we can provide a useful introduction with very different viewpoints, or significantly different viewpoints about what some of these issues are, and engage in a discussion, not just with the five of us, but also with the audience. So let me start now by introducing the four panelists. Then I will ask each of them to speak in alphabetical order, although we're no longer sitting in alphabetical order, but I can figure that out. I'm a law professor. I can do that in alphabetical order for about three minutes to give a first perspective. Then we'll have some discussion with them. I'll then open it to the audience to get some discussion going with you, and then we'll bring it back to the panel to close our session. Our first speaker by our first panelist by alphabetical order is Dr. Michelle Dipp, who is the CEO of Ova Sciences, a firm in the UK dealing in reproductive health. Alphabetically, our second speaker is all of the panelists are fascinating, but in some ways she's the most interested because she's here, but she's not here. Dr. Brooke Ellison is a professor of health policy and ethics at the State University of New York, Stony Brook. She is here courtesy of the beam machine, and if you haven't seen these before, so she's fascinating, and what she has to say is fascinating, but the device that brings her to us is also fascinating. And it's good to see Brooke here. Thank you. Our third panelist is Dr. Kathy Hudson. Kathy is the Deputy Director of the National Institutes of Health in the United States for Science Outreach and Policy. And last alphabetically only is Marcello Sanchez Sorondo, the Chancellor of the Pontifical Academy of Sciences. So I'd like to go in alphabetical order with each of those four panelists and ask each to speak for about three minutes on something they think is particularly interesting around these questions of ethical medicine. Michelle, you're first. Great. Thank you, Hank. It's really wonderful to be here. Medicine really exists to serve patients, and it's something that you just touched on. And patients are more connected than ever, and they're also global, as we can see. And so what better place in the World Economic Forum to have a global multidisciplinary dialogue about this, because I think that's really what's needed. So I'm excited about the next hour together. To take a step back, I'd like to talk a little bit about, you know, where is science taking us? Where is technology taking us? And have we caught up yet in terms of the ethics or is the science moving more quickly than the ethics? So when you think about where science and technology has taken us in the past, medicine really has been in a different form, right? It's been in the form of drugs, things that increase or decrease biomarkers that are associated with diseases or devices. We think of things that can replace perhaps arteries like a stent or perhaps a joint like a hip replacement. And there were ethics around, and there still are ethical discussions around those, and you actually touched on that in your story as well. But one of the things that we want to really talk about, and something that I'm particularly interested in, is now science and technology has taken us to genes, right? And gene editing. And so how do we even begin to frame the discussion? And I'll just throw out one way to frame it. So that's really what can we actually do, and then we'll open it up for discussion later. We can do something to the entire organ or the tissue. So you've probably read about things like 3D printing. So we can 3D print organs. We can grow tissue. Or we can do something to the cell. We can now take adult stem cells, and we can use what we know about the human genome to actually direct those adult stem cells to become certain types of cells. Or let's go one layer deeper. We can actually go into individual base pairs. So you've probably read a lot about a particular kind of technology. We have molecular scissors. One example of that is called CRISPR. So on a gene basis or a base pair by base pair basis, we can now cut things out. So we know that there are certain diseases that are caused by, for example, certain base pair repeats. And we have the ability now to cut those out. And we can do that in a pretty reliable way. And that's what I'm sure you've read a lot about. And then finally, and perhaps the thing that I'm the most excited about is there's a combination of those technologies. So what if, for example, you take an immature cell that you know carries a gene that causes a disease and you cut that out and then grow that cell into something. So for example, we know that there are immature egg cells in the body. You can now cut out a gene that causes a disease and then grow that into a fresh, young, healthy egg and then use that egg, for example, in vitro fertilization or IVF. In the UK, we know that they're doing actually gene editing for the first time on human embryos. This is purely for research use, but the technology is there. So now we have to decide how to use it. So I just encourage us to have more discussions like this. I think it's really critical that we have these discussions at a global and multidisciplinary level. Thank you. Thanks. Brooke, your thoughts? Wonderful. Thank you for that introduction. It's a pleasure to be here all the way about presenting from New York and talking with all these brilliant minds about issues that have such tremendous importance. So there's no doubt that we're on the precipice of a tremendous revolution when it comes to medical research really in ways that can change what it means, what medicine means and disease means and really what humanity means. If you had the pleasure of hearing Vice President Biden speak yesterday, he spoke about the fourth industrial revolution and how biomedical innovation and research is really in the centerpiece of this transformation new way of approaching the world. And really anybody who cares about science wants to see it approached in a way that is just and has a mindfulness of the future and for the benefit of humanity. That's what I think all of us care about. And I think as we're talking about these new medical advances, biomedical advances and emerging technologies, there are very profound lessons that we can take from things that have happened in the past in biomedical research in the past, particularly in a field that I'm most closely associated with or have pursued most closely with stem cell research and how lessons from that field can really shape our thinking moving forward. So we can actually start by talking about really actually before the derivation of the first embryonic stem cell way back in 1978 when the first IVF baby was born or in vitro fertilization baby was born and we sprout. And at that time immediately there were questions being asked about, what are full legitimate ends of science? Where should science be going? Where we feel comfortable? And there were questions about what's called the epistemic authority. So previously a science really dove too deeply into patterns of the creation of life or the origins of life. That was kind of areas that were owned by or kind of intellectually owned by institutions like religion but then their science was kind of taking steps or making advances in these areas and what I think is the important lesson that came out of that is that we have kind of natural law ethics and we have just perspectives on the meaning of life or the creation of life but that's not really the only perspective or standpoint from which to view these kinds of technologies or these kinds of advances we can look at them also from justice based perspectives or utilitarian perspectives that are equally as valid and equally as important. And then if we jump about 15 years ahead of that to the creation of what was called the human embryo research panel under the Clinton administration and what that was was a panel of theologians and ethicists and legal scholars of different kinds who will put together to really start talking about and thinking about what embryo research should really look like. And what I think was interesting about that is this team of intellectual experts came together and developed very sound and thoughtful recommendations about how this research should be pursued but unfortunately the recommendations were as heated as clearly as they should have been or could have been by policymakers at the time and I think one important lesson to be learned from that scenario was that especially when we're talking about science or issues where there's a diversity of opinion having expertise as a measure of authority is really a very valuable stance to take that can help kind of cut through some of the noise and all of her positions that we may not have been talked about quite as clearly and then if we jump ahead again to 2001 during the Clinton administration and the restrictions I'll put on stem cell research at the time it was kind of like in morality which was being legislated at the time and what was very interesting about that that time and that scenario was that while we have a diversity of opinion when it comes to the morality of this thing the morality of the embryo of the state of the embryo or how do you view the moral of legal rights of the embryo the restrictions I'll put on that science were filled in much broader ways that was the signature issue that became associated with embryonic stem cell research but the repercussions were felt much more broadly beyond that issue in and of itself whereas when we had concerns about the legitimacy of science more generally and how far science should go and questions became circled in the authority of science more generally and that was very problematic in terms of getting people to even look at science and how credible science was looked at and then a final point just to touch on was in 2007 with the development of IPS cells and how many people at the time thought that that kind of nullified the necessity of embryonic stem cell research and what was so critical at that time was scientists needed to go out to the community go out to the public and start making a case for themselves and becoming ambassadors of their work and why their work was so important and that's an important lesson to learn I think as we look forward with these emerging technologies as well that scientists need to be active participants in this kind of public engagement and public conversation and I think all these things helped to shape our thinking for the most important issue is the kind of moral responsibility that we have to take our knowledge and take our learning and take all the wisdom that we've learned through science to make the world a better place that's really what I think we're all here to do and to kind of alleviate some of the suffering that humanity continues to endure and that's really what science is all about Thank you Brooke Kathy So I'm going to build on Brooke's reflections of the past and quote from George Santayana who said those who can't remember the past are condemned to repeat it and I think there's lots of lessons from the past and as we're facing these new technological enhancements and new ways of being able to manipulate embryos and stem cells and DNA to remember that some of the fundamental ethical principles have remained unchanged and so we need not reinvent some of these foundational ethical principles that I think many of us hold dear and on which many of us disagree So I'm going to start I'm going to have something that begins with A something that begins with B and something that begins with C So my A is a Cilimar and recombinant DNA and a time when investigators got together and said, whoa, we have this new powerful technology what does it all mean and that gave rise to a set of guidelines that have actually accumulated amendments over time to generate now voluminous guidelines for recombinant DNA that include now guidelines for how to do gene therapy and required oversight of gene therapy It's time now, I think, in light of CRISPR and other technologies that we relook at those guidelines and if nothing else perhaps make them a little bit more comprehensible if not longer So many of the principles that were considered in the generation of those guidelines still apply today and still apply with CRISPR Second, B, Belmont Both of these happened in February one in 1975 and one in 1976, a long time ago and yet the lessons are still quite applicable today and what came out of the Belmont report which was a meeting of the ethical advisory panel in the US was a set of regulations that apply for all human research with human beings as research participants but at that time the stance and relationship between medicine and research participants or patients was quite different than it is today at that time medicine was more paternalistic research was clearly more paternalistic and so the time has come to re-examine how we think about interacting with human beings in research with the underlying goal to do research that can extend and enrich life and the thing that begins with C is chimera and this is a topic that's near and dear to Hank's heart and speaking of hearts so it is possible with stem cell technology and embryology and genetics to be able to potentially make an animal human chimera and chimera is a mixture of two organisms and potentially be able to have for example a pig that has a human heart in order to do that you need to know an awful lot about what what the potential is and also you need to know an awful lot about what may go wrong and so we have been spending some time thinking about that at the NIH in order to have the appropriate kinds of guidelines in place for the research that we fund and this is an interesting area of research that we are exploring as well so at the NIH our job is to support research that can extend and enrich life and that includes research that can help identify what are the boundaries and policy issues and ethical issues that we as a U.S. society and a global community really need to think about and so it's fun to join you here today and have a discussion about these issues Marcelo. Thank you. Welcome to all people. I am very happy to be here and thank you for the invitation. We need to consider that the ethics are two parts we can say to simplify things. One is the individual ethics and this is a question of the person but the other is the social ethics the more important virtue of the social ethics is the justice and one of the problems today in the question of medicine is that many of the things that we experiment is for the rich people and not for the poor not for the majority of the people of the world. We have a meeting recently in the academy that the conclusion was that the poor people live not in the same condition and not the same time than the rich people and this is the majority of the population that is to say one of the real in the contemporary world in the society today more important question is what can we do for all these new instruments of the science and the technology to all people and this for me is a real ethical question very important ethical question but we can come back to the other part of the ethics in the academy we have many meetings for example about the last one was in biology about the index cells and this is a fantastic thing and it's completely that opened a new completely medicine that we say not palliative medicine but real renew medicine because renew the cells and this is a very important thing we have another meeting about what is the state of death and we arrived to the conclusion that there is a brand there we don't know if you have the same idea and of course the question of the beginning of the life the difference is that we consider that the human are persons and human persons and this is to say that have a soul this is to say have an intelligence this is to say have dignity and freedom and we consider that the body is informed by the soul and for this reason we consider that the human body is a very special thing and it's impossible to self the body or the part of the body this is more or less the guidelines that we can discuss I understand that there are many new things of course we study we try to study to be at LaPage in the new things and we can discuss thank you so it's interesting I think it was Kathy who said that we have these ethical principles that we have held for a long time and they haven't changed but we don't always agree on them I actually think we probably do agree on one of them the one Marcelo brought up at the beginning of his comments on justice and the idea of trying to alleviate the injustice and equities even within a rich country like my own certain people from some groups live 15 years shorter lives than people from other groups they're citizens of the same country they are in theory all have access to all the same spectacular bios and medical healthcare and yet those disparities exist and you look across the world in 15 years between say Iceland or Japan two of the longest lived countries and some of the poorest countries the gap is probably closer to 40 years rather than 15 I suspect we all agree on that unfortunately that seems to be the hardest thing for us to make progress on but I hope we will keep that in mind I think sometimes bioethics gets distracted by the sexy new exciting biomedical research I love it myself but questions of longer standing questions in theory we all agree we need to pay more attention to putting those into practice one of the great things about being a moderator is I get to ask questions and I don't have to answer them or I don't have to force myself to answer them so I'm gonna put a question on the table for the four of the panelists and I'm gonna pick a particular technology but it's not so much the technology that I'm interested in but it's your way of approaching it how would you go about thinking about whether this technology was ethical or not and I also want you to keep two levels in mind ethical in terms of would you do it for yourself is it something you would feel comfortable with but on the other hand would you legislate such that other people could or couldn't do it so there's the social level I think slightly differently from what you had in mind but there's a social level of is this a good idea as well as a personal level let's talk a little bit about mitochondrial transfer a technology sometimes to me annoyingly called three parent babies this is a situation that is under investigation to help women who have defects in DNA in parts of their cells called the mitochondria so we know about the 46 chromosomes in your DNA that's the DNA in the nucleus of your cells but your cells also have these little the high school term is the energy powerhouse of the cell these little things that have their own DNA and that DNA can go wrong and it can cause disease and unfortunately every child born to a woman with that disease causing DNA will get the same disease causing DNA we all only get our mitochondrial DNA from our mothers so researchers particularly in the United Kingdom not exclusively there have been working on trying to take the nuclear genome most of the genes and cells of a woman who has this mitochondrial disease and combine it with the mitochondria from a woman whose mitochondria do not have these genetic defects and allow her for the first time to have a healthy child or at least a child who doesn't have that disease might have other diseases but who doesn't have the mitochondrial disease so the UK just held a parliamentary vote last year and decided to approve case by case licensure of research after further study I don't think they've granted their first license yet but I believe they're expected that decision will be made fairly soon how would you think about the ethics of mitochondrial transfer and I'll open that to anyone who wants to go first but one of you has to so I'll start I think one of the key considerations here is you talked about enabling a woman to give rise to a healthy child and I guess the key consideration here is whether or not the technique in and of itself has risks associated with it and do we understand what those risks are in the UK there is a panel that has been advising the government and putting in place sort of a governor on what kinds of research and clinical practice moves forward unfortunately in the United States we don't have that so we have a full out ban on anything that might harm or alter a human embryo and in some ways that strict prohibition has restricted our ability to really explore these issues about the safety of some of these reproductive technologies but I think the key ethical issue for mitochondrial transfer is what are the consequences for the resulting child in terms of their health and well being okay so safety issues and I suspect everyone at this round table at this round platform we're sitting on a table everybody at this round platform would agree that safety is at least a relevant and important issue are there other issues that would that you would think about in approaching the question whether this was ethical or not sure I'd like to just jump in there for a second Hank building on what Kathy had just said I'm very much in agreement that mitochondrial transfer is one of the biggest advances of biomedical research and one of the greatest opportunities to address mitochondrial disorders and try to eradicate a lot of these conditions that have been plaguing families and children for quite so long but what I think is also very important to think about is one of the kind of reflexive arguments that's made when it comes to concerns about emerging technologies is kind of this slippery slope or fatalistic perspective of science kind of this precautionary principle that if we take one step then it's going to lead to some disastrous out but I think that's not really fully accurate and something that we need to think a little bit more discernically about as a society just because we take one step it's going to ultimately lead to some disastrous or dire outcome and taking the initial steps is so important so critical to the advancements of science and if there's some outcome that we are wary of we can put kind of precautions or bans on that particular outcome or that aspect of the scientific pursuit but not prohibited or put in place a moratorium or anything like that on the basic science that needs to get to that point we'd worry about the next steps but you think there are other ways to handle them rather than prohibiting the first steps exactly Marcello I think it's more easy to have the transfer to have the induction of the gene because as you know in the gene there are many many things we say not express and we can express this I think the gene that needs this person this is the new method of induction so you're saying we should first explore things that would involve because the transfer is complicated also technically because it's easy to reject the transfer and on the contrary if you self-activate the part of the gene this is the line of the that we work in doc cells we have the Japanese to invent this in the academy and he's playing this I think this is really a great news and a very important future and already they use this for many tissues but it's very complicated for the nervous tissue but the other tissues go I don't know whether it would work for the mitochondrial DNA defects in question but it's something that one could explore but it would be difficult to do that exploration without being able to do research on embryos themselves so there's a little bit of a challenge there isn't there? the embryo you know the activation of the cell we can re-project H cells of the body with this new method and we are right to have a cell not in the same stage of the embryo cell but in this in the maybe with a similar potentiality and when the cell arrives to one day I think we distinguish between the total importance as you know and pluripotence and it's pluripotence but have all the possibilities that have the embryo cell Michelle? it's an interesting one Kathy as you were pointing out when we think about mitochondrial transfer what we're thinking about here is being able to replace the entire organelle which contains that genome and what they're doing in the UK does require the egg to be fertilized first so the egg is fertilized and then the transfer of the nucleus takes place into that donor egg into an egg with healthy mitochondria in order to avoid it and so the ethical considerations that come about are number one as a result of the actual technical what you need to technically perform so the fertilized egg itself and then the second one thing that I haven't heard yet that is another ethical consideration of the DNA from two different women and what does that mean for those children so that's just you know another topic that I know has come up in terms of the ethics of it aside from of course all the scientific safety aspects although it is fair to point out that all of us up here have DNA from two women and two men our grandparents and four women and four men our great grandparents and lots of other things sneaking in there from time to time so there's another side to this question and again I'm using the mitochondrial transfer just as an example that I think could apply to other things how should a society go about trying to make this decision and we touched on a little bit the UK has a body actually took a long time considering these issues before there was a parliamentary vote had a parliamentary vote now has a post vote study the United States doesn't have anything like that different countries have very different kinds of bioethics regulatory systems if you were in charge how would what kind of system would you set up for a country to decide what its position should be on some of these new advances I'm happy to jump in touching on some of the points that I had made in my opening remarks I think that the United States in particular kind of in the context of many democracies has not given as much attention as it possibly could to the importance of expertise putting together committees are assembling panels of science panels of scientists and ethicists and the allergens and legal scholars and philosophers and we're talking about having thoughtful conversations about really what's at the heart of these debates it's going to be so valuable and then taking recommendations and actually trying to make them matters of public policy I think that's where the challenge is going to be very often in the United States and that's what's made a lot of issues very complicated in the United States but I think when it comes to the future of science we need to take a little bit more of a thoughtful approach and to be more heavily than we have on the importance of expertise and thoughtful dialogue and challenging one another's point of view when it comes to how to talk about very complicated science and very ethical challenges Okay, other thoughts? I completely agree Brooke I think that the UK is a great example as is Japan in terms of bringing those types of groups together to have those discussions around safety and around slippery slope which are the two main things that I think people are always focused on so it was interesting to see the UK think through using again mitochondrial transfers as the example of course the safety aspects of the technique itself that's being performed and that's why it's for researchers for now but also the slippery slope aspects I don't think any of us would disagree that we know that a baby born to a mother that knows that they have a mitochondrial disorder that baby could die within the first year of life or could be blind or there's over 200 mitochondrial disorders I think we're all on the same page in terms of of course it makes sense to allow for that technique to be used for that but we also know that improving the number of functioning mitochondria probably also improves success with IVF and so that was the slippery slope argument that they had which is what happens if people start using this in IVF what happens if everyone starts using this that's why there was so much discussion and debate and so to your point there are ways to say as a society we want to look at the safety we bring a multidisciplinary group together to decide on that and in terms of how we actually bring this to patients in our country there are ways to regulate it such that it's appropriate for these types of patients but not for these types of patients now how we make those decisions is a tough one what criteria do we use? Do we trust it to the legislatures? Our host country recently had a referendum Switzerland had a referendum on certain uses of genetic testing I'm a Californian we love referendum so although I always love the results of the referendum so there are a variety of different paths people can take in terms of how to reconcile how should democracies deal with questions that are both technically very taxing and also ethically challenging every member of the country will have the same views on those are things I think all of our countries need to think about and work on I think the first thing is to know well the question of the point of view of science and of the point of view of the experience of this way and after discuss with the society of the profession so their jobs and in the end to arrive to the law but the law need to be do with the people to know the questions because many times for example another thing in the meeting the COP 21 about climate change all are diplomatics and lawyers and not scientific people it's good but we need scientific people in the country we don't know exactly the reality and I think one thing we all need is for the experts in different areas legal experts, political experts, scientific experts we need to be able to talk to each other Aristotle said that to take decisions we need to discuss and to discuss we need to be able to speak the same language we're just talking about English here biology is a somewhat different language from law which is a different language from theology and philosophy one thing that makes interdisciplinary work so exciting but also so challenging is getting to know the other fields well speaking of knowing other fields we should know something about the other people in the room or at least what interests you so let's take some questions I believe there will be a microphone passed around sure one more thing to the first question I think it's very important today to point in the question of education of the people because really to know what is the news that we have and the form that we can arrive to have this real news in the medicine and in relation to the health in the contrary really we don't know in many countries that I know in the curriculum we don't have really information about the question of health and I think this is a very important question and also to resolve the problem of the poverty one of the way also in this area is education those of us on the panel who are teachers certainly agree with you and I suspect those who aren't teachers agree with you as well I think that also the doctors all the people to work in medicine need to be more communicative and not to be only in his in a way that goes back to the language issue because it's so easy to talk in your own language the medical language or the biologist language and you think you're communicating but the rest of the world you might be speaking Greek and there might not be other Greek speakers out there so any questions from the audience yes I'm from Taiwan I was wondering how this is the debate compared to let's say in the 1950s when we started the organ transplant anyone want to take on the organ transplant question really a little bit later than that it was more the late 60s the first transplants were in the 50s but only if you were lucky enough to have an identical twin who had the same kidney I'll take a stab at this and really want to echo the justice issues that you talked about you know when you look at the availability of organs and how well we have communicated to citizens how important it is to make their organs available after their death to others there's a huge in the United States there's a huge racial disparity in the availability of organs for transplant and that's a justice issue that is fundamental to devote as much science and technology to overcoming that barrier as we do to some of these other issues of less import that would be substantial the other you know where you see sort of an intersection of transplantation issues and embryonic fetal issues is in this issue of fetal tissue research and fetal tissue transplantation and that has become a big political issue in the United States very recently where there were allegations of harvesting fetal tissue for research in unethical ways and that resulted in a nearly blocked funding for the entire federal government which was pretty unprecedented so that's an interesting example of when these issues get conflated and confused but I think the biggest issues around transplantation right now are really the organs is around the availability and the justice issues I agree with that completely and I think in addition to that what I think was kind of central to the organ transplantation and debate early on and what we see kind of being echoed to this day is this question of kind of like frank and science right how far does science go where does it become morally repugnant and I think that is a very kind of subjective and not a particularly helpful line of thought to go down because there is such a diversity of opinion when it comes to what is considered morally repugnant or dangerous or frank and science when we're talking about what can potentially benefit humankind and all of humanity I think that's where we should be focusing most of our attention I think that argument doesn't get made quite as strongly as it possibly can in a lot of these kinds of debates I do think that there are some other interesting issues in the early days of organ transplantation and really echoing Brooke to some extent there were people who were afraid that if they were male and they got a woman's heart that it would change their essence in some way which was not expected to be the case and has thus far not turned out to be the case there were people who thought if they got a heart from a person of a different race that would change them so there were some popular beliefs that weren't in line with the science that did have some effect but there also are some there were some genuine safety issues and you have to I think the hardest thing anyone has to one of the hardest things to do has to be to decide when is this ready to try for the first time in humans because no matter how many times you've tried something in non-humans the only way you know whether it works in humans is to try it and you can never be sure there was recently just last week the disaster in France with the drug trial they'd done that in non-humans I think they'd even done it in non-human primates and try it in humans and terrible things happen particularly in organ transplantation or even more primitively in blood transfusions there were a lot of people killed before people realized what ABO blood types and RH positive and negative blood types are so the safety issues but also public understanding issues another question yes I'm Anna Lopez I'm from Toronto Canada I wanted to ask you about end of life and I know it's one of those things that in Canada the Supreme Court has just given the Canadian government another four months to sort of think about the legislation but I think you're going to see country wide legislation in Canada in about five or six months that will allow doctor assisted suicide and things that happen in Canada across have a way of sort of permeating down and affecting how you think so just your comments about that and it will completely transcend the justice issue because everyone will have access to it in the country it won't matter if you're poor or rich everyone has a doctor and we'll be able to make that decision themselves so just your thoughts on that I would note that everything from Canada permeates quickly south like universal healthcare still hasn't made its way all the way but we're becoming a little more Canadian so I'm really glad you raised that issue I think we do death really badly and my dad died a couple years ago and when he was dying I had to sit the whole panoply of physicians and healthcare providers down and force them to acknowledge that he was not going to survive I should not have been the person to do that and then I had to convince my family that that was also the case I could not have been in that position so these people who are so driven to cure who can't see when they can't and so that's sort of the first step we can't allow somebody to make the option of assisted suicide if we can't even get to the point where we can acknowledge you're not going to survive and what do we do around that there was recently an institute of medicine report dying in America and it talked about palliative care and hospice care and other kinds of care and basically said that those areas of medicine have really grown up and been acknowledged as specialties by the American Medical Association and others because of a failure of the rest of medicine to deal with death so we have a huge way to go before you make the end of life and making aging a dignified and worthwhile and meaningful we're not there yet, right? Speak for yourself I think I'm quite right with that with that position I think the assisted suicide kind of end of life decision making has been one of these debates that are admired in this epistemic authority kind of disjuncture as who has the right to say well life should be over and I think it has been a very unfortunate way to characterize this very complex and very difficult kind of conversation to have and I think when it comes to matters of who has the right to say when the life can be over in addition to kind of this almost paternalistic approach that like the American Medical Association or the medicine in general has taken to the physician, patient, relationship has really made these conversations very difficult to have very unfortunate and difficult to have nobody should be placed in the position where they feel like that decision is taken out of their control very often when you're facing disease or disability so much has already been taken out of your control to not be able to make this very central and important decision I think is very unfortunate and it's been a tremendous blight on the US healthcare system, it's caused all sorts of problems not just for families but for the entire healthcare system in general and I think it causes unnecessary heartache and we really need to be talking much more openly and comfortably about. I think that in many countries, I don't know in your country really because they're changed. I'll tell you about it after you're done. For me the virtuos way is that is opposite to two different extremes one is to anticipate the death. We are sure that these people go to the death and in this case I anticipate the death for some reason and the other extreme is to give an artificial life to a person that is death and for this we started many times this problem in the academy and we arrived with neurologists that to say the criteria could be the brand that I think is the criteria of Harvard and when the brand is death it's the death of the person and fortunately we are lucky because it wasn't the time of the poor Benedict and poor Benedict loved Saint Augustine and we find a text of Saint Augustine that says when the brand is death the soul goes to the body. That sounds very much like American lawyers, like Justice Holmes you find a quote from Justice Holmes but the United States situations and I think particularly in comparison with Canada about 15 years ago the US Supreme Court actually was longer than that, 20, 25 years ago the US Supreme Court was presented with the opportunity to decide there was a constitutional to control the circumstances of their death the US Supreme Court at that point decided not to almost 20 years ago the state of Oregon one of our 50 states legalized physician assisted aid and death the state of Washington followed about 8 years ago, Vermont followed a couple of years ago my own state followed last year but there are 50 states and 5 have now legalized it to some extent, 3 by legislation 1 by a referendum and 1 by a judicial opinion the other 45 states I think some of them will join them and some of them won't This is an interesting example of the states as laboratories right, so what's the experience That would be Justice Brandeis quote, the states as the laboratories of democracy That's right, so what have we learned from the experience of the families and the individuals where this is and from the perspective of physicians as well I think it's interesting and as a lawyer I'm almost legally required to say that the first 2 words in any answer should always be it depends I think we have learned that the details make a difference but that at least in the Oregon situation which has been going on for almost 20 years there seems to have been few if any abuses and no real expansion but in comparison and I hope I get this right if there's anyone here from the Netherlands or from Belgium, in Netherlands and Belgium they've had both physician assisted suicide and actual euthanasia, not just assisted suicide but the physician ending someone's life and those have expanded in the number of people used and the number of people who use them and the number of medications for them so the cultures seem to make a difference in how far we go, the details make a difference and I do think this is one at least in my country in our country where the laboratories of democracy having the different states not only try different things but Mississippi is not the same as California is not the same as Vermont is not the same as North Dakota so at the international level as well I think some of these questions there's no one right answer for every country part of what we need to think about is what things are universal and what things are more rooted in culture a quick question and a very quick answer and please identify yourself and I was thinking even before you get to the point of say physician assisted suicide or euthanasia along with what you said we really still have a long ways to go in terms of end of life care because even without that where do you draw the line in terms of palliative care in terms of hospice because even though finances aren't the be-all and end-all they are significant and healthcare costs are a major burden in our country and we know that a lot of Medicare dollars maybe 50% of Medicare dollars are spent in the last three months of life when we knew from the beginning that that person probably didn't really have any meaningful life left whatever you want to define that but I think we still need to address those issues even if we aren't supporting physician assisted suicide or death great point and I think those are again coming back to some of the justice issues of allocating our resources in a way that is just that treats people well and makes the best use of them our resource and of course the scarcest of all resources is time and we are just about out of time I would like to get one sentence from each of the panelists one sentence that you would most like our audience to remember from your thoughts and not a long sentence the golden rule and this we need to be in the position of the people for example in the case of the death if you want to anticipate the death or not if you are conscious this is the question we need to do to the other the things that we want to do to yourself this is the golden rule and especially this is for all people extension of the new things for all people this I think is the more important very old idea that applies to very new circumstances I would say that we need more platforms like this so I would encourage us to continue these kinds of discussions so that we have you know global multidisciplinary discussions do you have a sentence sure so I think we as individuals in our society should want science to advance we should want it to be a vehicle of translating human suffering into human potential and if through biomedical research we're given the chance to make the world a better place and to alleviate suffering then we really must try I think it's a run on sentence but I'll allow it Kathy so I think we should focus on those issues and the challenges that are really widespread and focus disproportionate attention on those we tend to get distracted by the new sexy and sensational where in the long term those will probably have a little real impact on our lives and my last sentence is to ask you to join me in thanking our four panelists for what I think has been a great hour thank you