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Doing Good: The Promise and Perils of Science

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SARA BLOOMFIELD: I didn't mention in the introduction, but I think it's, I hope central to why you're here tonight, that you are the daughter of two Holocaust survivors. You have a Master's degree in public health, a Ph. D. in social psychology as I said. You wrote a book with your husband, Tom Beecham [ph], who's a philosopher, which is about informed consent. And you're the director of a bioethics institute. So would you talk a moment about your career path and to what extent your personal history seemed a little bit intertwined which brings you here to us tonight.

RUTH FADEN: My pleasure. I have to say first of all, this is, it's sort of like being in a living room, except with an audience. Which is strange because we can't see you very well because of the lights. So if we ignore you we're not really. I am the daughter of Holocaust survivors and I especially want to acknowledge my mother unfortunately is no longer with us. But my dad still is and he is way in the back and you can't see him. But if you would just, everybody give him a round of applause I would really appreciate it.

Okay. All right. So what's the connection? I'm not entirely sure. People have asked me the question that Sara has asked me, many times now, perhaps most publicly when I chaired the commission that Sara referenced that was looking at abuses of human rights in radiation experiments conducted by the American government, in this case in the 1940s, 50s, and 60s. I don't know. I don't think there's a straight path in anybody's life. I do think that in my case when you grow up a child of the Holocaust, you grow up knowing in a way that I think most children don't know, that evil and injustice is endemic in the world. It's not something you're surprised to find out about as you get older, you just know it's there from the beginning. And knowing that it's there from the beginning I think does perhaps set you off a little bit differently than other people. And so first I started looking at questions of the way in which Holocaust survivors had adapted to the United States. That was work I did when I was an undergraduate. I'm interested in women's health issues, in women's rights issues, and civil rights issues and human rights issues, and ended up working on medical rights issues. And so I think it's, it's a, there's the, there's the thread but it's not a straight line.

SARA BLOOMFIELD: So going to the medical issue then, you worked close-, you're not a doctor...

RUTH FADEN: Nope.

SARA BLOOMFIELD: But you work closely with doctors and I would call you an expert in public health and bioethics. So from that both personal and professional perspective, what are the lessons of this exhibition that you come out with?

RUTH FADEN: Um, well, and I hope if you haven't seen the exhibit that you will take the time to go see it, because like everything in this Museum it's extraordinary. This particular exhibit, perhaps because I work in biomedical ethics to me is especially affecting and overwhelming. The exhibit I think underscores what we know to be the complicated tension between advances in science and their implications for us as human beings. The exhibit shows science married with an ultimately evil state at its worst, at its absolute worst. But it, it, the way the exhibit is structured and the way at least I experienced it, you walk into it slowly, incrementally, so the very first steps aren't particularly scary. And then the next steps get a little scarier and the next steps get a little scarier still. And so I think one of the big lessons for how we think about advances in science today that come from the exhibit is to walk humbly when we walk in those little steps, and to think what, what might follow from this advance and that advance and how it works and how it might be taken up and what could come from it.

SARA BLOOMFIELD: So you've referred here to the tension that's the inbuilt tension in science that was certainly there before the Nazis. I think most of us tend to think about the Hippocratic Oath and that that is tied very much to the moral obligation of doctors, and I'm just wondering, for example, would these German doctors in the 20th Century, in the 19th Century have taken such an oath? What was their notion of, did they have ethics courses, or in this country? I mean what was the notion of that field before this era?

RUTH FADEN: We should be humble about many things, one of which is ethics courses. And the implications, of connection between ethics courses and ethical behavior. The German medical community was a sophisticated and organized medical community. It was even a sophisticated community with regard to reflection on the ethics of research involving human subjects. There's a reference in the exhibit, you have to look for it there's so much there, to a 1931 code of ethics that was, a Weimar Republic code of ethics, for the conduct of research involving human subjects. Many people find it startling to know that Weimar Germany had a code of ethics, pre-dates the Nuremberg code about which most of know something, and is actually quite a rigorous code of ethics for the conduct of research involving human subjects. It's quite an amusing, quite an amusing story. Sara, when I think about the exhibit I think that there's a real tension in terms of connecting it to modern concerns about advancements, particularly in biological science and where society is going. On the one hand you can walk through the exhibit and you say oh my God, look what happens when science runs amok and connects with coercive, political, oppressive regimes and we get these horrible outcomes, culminating of course in this you know unspeakable horror. On the other hand, advances in science have given us so much, and it's almost as if I want to have a parallel exhibit only it's not fitting in the Holocaust Museum, that says okay, but at the same time, from wonderful laboratories all over the world we have developed cures for dread diseases, treatments for horrible diseases, we've extended life expectancy dramatically, not fairly or equally so across the world, but at least those of us here benefit from that. And so it's, it's very difficult to focus on both sides at once, but that's what we really have to do.

SARA BLOOMFIELD: But just one comment, when you said that it reminds me of one of the doctors profiled in the exhibit. He carried these tensions within himself. He was a pedia-, noted pediatrician who had invented an incubator for premature babies, had done important research on rickets, and yet went on to play a leading role in the pediatric euthanasia program which killed five thousand children.

RUTH FADEN: Actually I found his story among the most difficult to integrate. This was a well debated and discussed particular physician. One way to think about what happened with that physician and potentially with the whole story of racial purification and this search for the perfect race that is perhaps too comforting, but I think partially if not largely correct, is the lesson of separating us from them. And this is the lesson that we hopefully have learned about our common humanity and about how easy it is to begin to treat other people differently and then ultimately less respectfully and finally degrade them by treating them as something other than fully like us. And what you see in this exhibit and of course in the whole Museum is an extraordinary process of the separating of us from them, the defining of other human beings as not fully human, ultimately as subhuman, and finally not worthy of appropriate moral regard. And so it would be nice to believe that all we have to do to avoid ever again repeating the misapplication of advances in science or scientific thinking to great moral wrong is always to remember our common humanity. I don't know that that's enough, but certainly that's a lesson that that particular physician didn't learn.

SARA BLOOMFIELD: So when we think about the legacies of the period, because we cannot always count on human beings to have that perception, I think some of us, myself, like I have a question about the difference between medical ethics and bioethics.

RUTH FADEN: Okay.

SARA BLOOMFIELD: And did bioethics, is it a legacy of the Nazi period? In other words how did the Nazi period change the way, other than the informed consent, the way doctors think about their profession and this problem of their profession.

RUTH FADEN: There are two questions there. What is the impact, or what was the impact of our coming to grips with the medical experimentation part of the Nazi experience in particular, and for modern medical ethics? And what's the relationship between medical ethics and bioethics? So let me do the second first because it's easier. There are lots of ways to tell this story, but we all know that medical ethics, if we understand medical ethics to be the ethics that should govern how physicians interact with their patients and with their patients' families, has been around for a very long time. People like to refer to the Hippocratic Ethic whether we want to attach a great deal of significance to that history or not, it's certainly the case that we've had doctors and healers of all stripes for a very, very long time, and more or less conversations within the community of healers and doctors about what is right conduct and what is inappropriate. Bioethics, by contrast to medical ethics, is a much younger, newer enterprise. It really doesn't exist until effectively after World War II, and it's connected to the Holocaust, and directly. I'll get to that in just a minute. But it is more directly connected to advances in biomedicine immediately after the World War, Second World War, things like the creation of artificial kidney machines for example. And resuscitation, and so on. That cause people to start to think about what does it mean that we have these advances in medicine. How should we be approaching them as a society? Also there were our own, I'm sure many people here know, our own scandals, our own horrible stories with regard to abuses of human beings and biomedical experimentation, the Tuskegee syphilis experiments coming to light, abuses of prisoners, and of children and elderly people in institutions. All of this on the one hand a story about, a bunch of stories about amazing advances and how we should respond to them on the one hand, and evidence that people were being mistreated in very bad ways in biomedical research on the other, brought together a set of forces that attracted the attention of scholars outside of medicine. So unlike medical ethics, which has generally been a conversation of doctors to doctors about how doctors should behave, biomedical ethics really began with a conversation started by theologians, joined by philosophers, by lawyers, social scientists, and then physicians and nurses join the conversation. And so it's now a much broader area, very interdisciplinary, and some people would like to put medical ethics kind of in as a sort of subset of biomedical ethics. Now where does the story of the Holocaust and in particular the medical experiments that were the kind of defining expression of medicine turned evil in the Holocaust. At the time of the Nuremberg trials, not only historians and I know we've got some distinguished historians in the audience so I'm feeling very nervous, not all historians agree about this, but the general I'd say the dominant view is that American physicians and the American medical community did not very much identify or see as relevant what the German doctors had done. A very dear colleague and mentor and friend Professor Jay Katz used to say that American physicians saw the Nuremberg code as a wonderful code for barbarians, but we're of course not barbarians, so what does that have to do with us? It was a long time I think before American biomedical scientists and physicians began to draw a kind of personal connection between the Nazi experience and the Nuremberg experience. In the public health world for example, the early part of the exhibit shows the sort of positive eugenics movement. You should not drink or smoke if you're pregnant. You should eat well. You should, of course, and this is the part that gets a little, starts to get edgy in the, getting married correctly, marry genetically correctly, marry a person who's going to help advance the race. But there was a huge, for example, focus on anti-smoking and on the health of the Volk, the health of the people, that has a very eerie resonance with many issues in the ethics of public health policy. But public health people don't generally look back and relate to that period and see the connection. So we've tended to really see that, we've tended I think incorrectly to wall off that whole world and say well they were barbarians. We're not barbarians so none of that stuff would ever happen in American medicine or American public health or American policy.

SARA BLOOMFIELD: Well that, in a way, leads into my next question. You referred in your, the beginning of this answer to creating a broad conversation outside of the medical field, and that being a very important development after the Holocaust, and I wondered if, this came up in many of our conversations with people you, and other physicians, about whether Nazi medicine or the Nazi doctors in quotes has become a conversation stopper so that you can't have subtle and reasoned discussion about some of these issues because of the barbarians so to speak, and what they did.

RUTH FADEN: Well I think that's often the case. So referring to something as Nazi-like or saying that someone is a Nazi or saying something is like the Holocaust is in a way much broader than what we're talking about now, a very intentional way to stop conversation. It is the case that because what is most well known, the death camps and the barbaric experiments in the death camps is so obviously evil and wrong, that people have not spent a lot of time analyzing the ethics of what happened in those camps or the conduct of the Nazi regime because it's so obviously morally wrong. I think one of the really incredibly important things of this exhibit is it backs it up. It backs the story up to the time at which, if you were living in those times and if you really are honest with yourself I think as you go through the exhibit you would say, I can imagine this happening, and I can imagine maybe some conversation or maybe even some public debate about whether this is right or wrong. But it wouldn't, I can imagine that it wouldn't strike everybody as necessarily evil, even at the time. And that's I think what the real power of the first part, in fact most of this exhibit, is that it does allow us to related and not be stopped by the sheer evilness of this, the sheer awful wrongness, immorality of the conduct in the Holocaust itself.

SARA BLOOMFIELD: So when you go back to the beginning of the exhibition, the beginning of the 20th Century and eugenics is prevalent in a lot of countries including our own, it does prompt the question about what are the distinctions between for example eugenics and genetics. And today for example I think of the disease Tay-Sachs, which is a disease many of these victims would have been prone to. But we've eradicated that disease. Have we done that through something akin to genetics and does this get close to preventing births of people with disabilities? I mean where does one take this issue?

RUTH FADEN: The short clip talked about the, I think the language was exactly perfecting the human race. The impulse to improve the human condition I would assume is pretty ... and shared in some respects by all cultures and all times. Improving the human condition can be understood only and exclusively in the most positive ways. If we're talking about preventing injury and disease. If we're talking about curing illness and alleviating suffering. Adjusting and accommodating for people with disabilities. These are always to improve the human condition. There are also ways to improve the human condition that are more problematic ethically that also have to do with prevention, which the exhibit introduces. So for the longest time, and I want to, I want to start with a public health example and then I'm gonna move to a high tech sort of genetic intervention and challenge everybody to, and I'd like you to, as I'm talking you can tell me where you leave the train. You know at what point are you saying, oh that's fine, that's fine. I don't know about this. This makes me really uncomfortable. So for the longest time we have wanted to try to find ways to help people have healthy babies. Maternal nutrition. Prenatal care. We found out that certain supplements were likely to reduce the prevalence of birth defects so we enriched our foods. We gave pregnant women vitamins. Everybody okay with that so far? That's improving the human condition, improving ... preventing people from being born with disabilities by nutrition and vitamins and vitamins and diet, everything's okay there. We then developed a technology, many of you, I'm sure all of you are familiar with which allowed us to identify in utero whether a pregnant woman was carrying a fetus that when the fetus would be born would have a disability or a dread disease. One of course was Tay-Sachs. We're now talking about genetic testing, prenatal genetic testing. And programs started to be launched for Tay-Sachs, but also for sickle cell disease and for cystic fibrosis and for other genetic diseases, where people would talk about the success of these programs in terms of preventing cystic fibrosis or Tay-Sachs or sickle cell. But in fact what they would be preventing would be preventing people who would have those conditions from being born by terminating the pregnancies. So that was the next step. We have in fact to a significant degree eliminated Tay-Sachs, and people began to have in some cases negative reactions depending on how serious or significant the disease is. So you need to think as we're talking about this, if God forbid you were in such a situation it's terminating the pregnancy. It's preventing the disease. But at this point it's not just preventing a person from having the disease, it's preventing the person who would have had the disease ever from existing. Now when you go through the exhibit, what the Nazis did of course, from the point of people who are concerned about the way in which we understand what it means to have a disability, is even after the children were born they killed them. Right? So part of the challenge to a moral and just society is to say, can we understand there to be a morally relevant difference between the one case and the other? I'm suspecting most of you would say that there is, but now you've got to sort your intuitions out. Those are the sorts of challenges that we face in thinking through the ethics of harnessing the power of science or having a public health goal of having healthy children. And figuring out what the right public and personal policies are.

SARA BLOOMFIELD: Right. So the Nazis would have said their, their program was a program of public health.

RUTH FADEN: Absolutely.

SARA BLOOMFIELD: Healthy babies. There's a beautiful brochure, it's actually from the Weimar period, Healthy Woman, Healthy Nation. That the child bearer is key to the health of the nation. So what do you, as you think about what are appropriate public health goals and how does the, do we monitor the state that monitors public health?

RUTH FADEN: Well here's an important distinction, something else for all of you to think about? One is public health or public policy goal, and public policy laws. And the other is personal choice. The Weimar period, and in Nazi Germany we were talking about strident legal mandates of one sort or another as well as attempts to exhort people to marry correctly and eat well. The positive part in the beginning. But ultimately you had a killing machine that destroyed quote defective people and then ultimately attempted to annihilate an entire set of peoples. Very little about the Nazi and Weimar period was about individual freedom or choice. Our society we struggle with both. We try to figure out what the right public health policies and public health goals should be. But we also struggle with our own sense of individual freedom or our own sense of liberty to do what we think is best for ourselves and for our children. So when we talk about striving to improve the human condition as a global society, we engage public policy issues, where each of us always I think striving to do the very best for our kids. And this is where the enhancement issues come in. Where we do, if we have the resources, we try to get whatever we can get for our children that we think will assist them. And now we are pushing the edge with genetics to see whether we can't get advantages that might assist our children in the future with a little biological push. And the question becomes once again, you know how far do we take what knowledge might be able to allow us to do?

SARA BLOOMFIELD: Well, yes, the Nazis certainly didn't allow individual discussion, and one of the things that you hear in the enhancement issue sometimes as well, if it's voluntary, if it's by decision, if it's my body, the state has no role.

RUTH FADEN: Let's, I'm maybe perhaps focusing too much in prenatal and genetic connection. But let's take questions about the use of genetic technologies. If we had a national policy, for example, that said there was a public health goal that said we will require everyone to terminate a pregnancy unless the pregnancy is established to be likely to produce a child without disabilities based on prenatal testing, there would be rightly an enormous outcry, that would be unthinkable, we hope. But we leave the territory to individual choice right now. Where we push the envelope in the reverse is, for example, when people request the use of genetic technologies to determine whether they're carrying a boy or a girl because they want to terminate one or the other, that is to say if the fetus would turn out to be a boy child they don't want a boy or vice versa. Now we're having a reverse conversation which is whether public policy should prohibit that kind of individual choice. So we have both going. We have both a view that our commitments to individual liberty and choice serve as a kind of brake on what our country can do that didn't exist in the Weimar and Nazi period. But then the worry flips over on the other side, because we have such a privileging of individual choice and liberty, are people going to make individual choices that are unethical or unacceptable, and should indeed the state step in and curb individual behavior. So we've got a double edged kind of an issue, a double edged set of worries that we always have to be keeping kind of in balance.

SARA BLOOMFIELD: So is the best we can hope for that there is constant public debate around these lines?

RUTH FADEN: Well part of why, part of why I take as many opportunities as I can to talk to as many people as I can is I think that to a significant degree that's correct. That the more that there's informed public debate about issues and advances in genetics and advances in cell biology and stem cells and cloning and the whole range of issues that we're concerned about as science advances, the better off that we'll be. But I think it's not simply or solely public conversation and public debate, it's engagement within science and science with the public and science with our policy makers. So it's gotta be a constant, a constant conversation, and good examples are very important. Having people test their intuitions against very specific cases so they can see just how far you can go. I remember years ago I was in a conversation with other colleagues and we were trying to sort through, this was a public health ethics case, whether it was, whether in what ways it would be appropriate to encourage prenatal diagnosis or testing for one condition or another. And someone suggested that we try a physical exercise. So bear with me for a moment, you have to sort of imagine that you're in this physical line. And what we were to do was to try to sort out our own values, and there were about fifteen of us in the room. And we were supposed to line ourselves up and talk to the person in front of you and the person behind you about whether you think it would be appropriate, ethically justifiable or not to have a public health campaign or to have obstetricians to encourage people to consider prenatal testing for a condition that would produce this condition or that condition in a child. And I'm down the line, and somebody turned to me, and we were actually, we were supposed to make the condition more and more serious, turned to me and there was, she turned back to me and she said well I would definitely think we should have prenatal screening if we could pick up fetuses for children that would have scoliosis. And I turned to her, I don't mind saying this, and said, I have scoliosis. Right.

SARA BLOOMFIELD: That's a conversation stopper.

RUTH FADEN: Well, and she, and she said. Oh gosh, I didn't mean it. I didn't mean it. And I said, it's okay. You know, it's all right. Let's think about that. Of course I'm having a life worth living and I'm very glad I'm alive, but that's not the right way to think about the issue. But it's, it's the, it requires kind of that engagement and conversation. One of the things that Sara we haven't talked about which is the, maybe the other side of the exhibit is the implications are so many here for modern and contemporary debates. The current controversy about patient, or assisted death and physician assisted suicide and euthanasia. You go through an exhibit like this and you think oh my God, you know, what are they thinking, how could you possibly have legally permissible, assisted death. Look what happens. On the other hand, if you spend a lot of time with people in end stage illness, and you understand how difficult it is in fact often to get adequate relief from suffering or pain, and you talk to many physicians and nurses who will tell you quietly how much they've anguished over what they ought to do, and what they in fact have done out of love and caring for particular patients in particular circumstances, you begin to think something else again. So it's almost as if, but again just to draw the other analogy, in the Holocaust Museum you can't have this. But it's almost as if I want a parallel exhibit right next to it that says okay, but sometimes when people hasten and help other people who are suffering at the end of life it's not so bad, it's actually a good thing, and it doesn't have to turn out this way. And maybe the real challenge is figuring out the conditions under which it does turn out this way, this horrible, awful way, and the conditions under which it becomes a caring and loving compassionate act, and trying to make sure we keep it straight.

SARA BLOOMFIELD: I actually want to bring up another big issue which you and I have talked about before, and that's the issue of race. And I want to bring this up in the context of an article in The New York Times Sunday Magazine several months ago. Some of you may have read it. It was by Robin Marantz Henig, and the article was entitled, The Genome in Black and White and Gray. And she talked about how genetic research might change the way we think about race today and actually in a way provide a scientific basis for racial differences. And I just, she came to visit our exhibit here, and I want to just read something she wrote about it and ask you to comment on it. She wrote, with rulers, calipers, charts of eye shapes and elaborate reconstructions of family trees, eugenicists of the 1920's and 30's took great care to describe physical characteristics of different racial groups. They photographed subjects, measured their noses and mouths, made plaster casts of their faces, and documented variations on facial features and head proportions. Is it possible that the difference between then and now is that the tools have changed, that instead of using calipers and scales, scientists now use DNA sequencing machines? Connecting contemporary genomic studies to the Holocaust is too glib, but the exhibit is a sobering reminder of how easy it would be to travel down that path. So I'm wondering if you would comment on the notion of race, whether it is a social or scientific construct? Did the Nazi era affect our thinking about race? A lot of questions there.

RUTH FADEN: A lot of questions. Well I would, I would start by saying the author is right it is too glib. I think it's way too glib. While it's certainly important to recognize all the complexities around the notion of race and what it means, and I'm by no means an expert on this topic. But I have thought some about it. Let's start with intent. Okay? And I want to connect it to the comment I made earlier about the importance of never allowing the formation of attitudes or belief structures that permit one group of people to view another set of human beings as somehow subhuman or other. The focus on race in the eugenics movement was wrapped up in the social Darwinistic, larger view about inferiority and superiority between races. So the operative presumption was not only that individuals in the understanding of Darwinian sorts of evolutionary kinds of things, would carry more successful traits, and those who did would perpetuate and so on. But that a whole race is differentiated in an evolutionary sort of way into inferior and superior kinds of human groups. And the underlying, harnessing, of the anthropology and the insipient sort of twisted, Mendel-ian sort of genetics kinds of motions, was all around an attempt to prove that there were these race differences and that you could really mark out the characteristics of the inferior races and the superior races. So you start out with a, from the get go with a certain I don't know if you really want to think about it as a philosophy, but a certain philosophical and biological view about the way in which human species are organized into sub-species or sub-groups that were biologically based and that proved that some humans were better than other, some human groups were better than other human groups. Modern genetics attempting to understand the commonalities and differences in terms of ancestral groups doesn't start with a presumption that certain groups are better than others and we need to figure out how we can really classify who's in what group so that we'll be able to establish with certainty how to classify people. I'm not saying that it isn't possible to misuse current research with regard to race and genetics, but I don't think that's the real problem in the modern situation. In the modern situation we have huge confusion about whether and how the human genome project and genomics more generally is helping us either understand what race means or undermine what race means. On the one hand, for example, we hear that essentially we're all genetically the same. And then we hear that a new drug, a new heart drug for example, only works, or works best in African Americans than it does, say, in people who are not African American. But how can that be true if there's no biological basis for racial categories in the human genome project? So what's happened I think is that we've gotten a very confused conversation, a rather very, unfortunately awful set of concepts that continue to be associated with unfairness and inequality. So I don't mean to suggest that the current work in genetics around race can't end up exacerbating racial tensions, ethnic tensions, and so on, but I think it's a really big mistake to connect the modern worries, which are very real, with what was going on in the eugenics movement.

SARA BLOOMFIELD: I want to remind you to fill out your questions and the staff will be coming down the steps shortly to pick them up so we can open it up for your part of the program. But I just want to ask you, Ruth, another question. In the same article she talks about the slippery slope if you will, that path. And she actually asks, you mentioned the human genome. She asks that question of Francis Collins, who is head of the National Human Genome Research Institute about it, and his answer to how we avoid that was, I think our best protection against that, because this work is going to be done by somebody, is to have it done by the best and the brightest, and hopefully those most well attuned to the risk of abuse. And I wonder what you thought about his answer regarding the best and the brightest?

RUTH FADEN: Well, I usually agree with Francis when it comes to the best - I mean obviously you want the best and the brightest doing science. We don't want stupid people doing science. That wouldn't be very helpful. So I'm not sure where the comment goes. But I think the part where Francis may really have been going with that is that in an open context. I mean what you want is the science to be done openly and open to oversight and regulation. And that's the key I think to the kinds of concerns that, that people are raising. When science gets clandestine or goes underground or gets protected by the state in ways that don't allow the public to really understand the full force of what's going on that's when it gets scary. When I was doing, when I was doing this investigative work for the Presidential commission that I referenced earlier, what we were uncovering is that the federal government had actually used the pretense of national security to hide from public view experiments in which human beings had been exposed to radiation, plutonium and other radioactive elements in order to address, in some cases very legitimate and important scientific questions. But they used the apparatus of the state to - and this is our country, okay this is not elsewhere. They used the apparatus of the state to keep those experiments from public attention. They actually publicly said they weren't doing any work of this kind. And it's, what I took away from that, what I found so absolutely chilling and so terribly important is that research that's done in secrecy, and if you think about what happened in ..., the move from the Weimar sort of, what they could get away with, to then what the Nazis could do using the beginnings of the war and the intensity and necessity. You know we have this great, we're at war we have to do things. Now you can hear echoes of that of course in conversation today. National security threats, threats to the American people, begin to become justifications for actions and policies and practices. In science and everywhere else. That otherwise we wouldn't consider acceptable. And it's that kind of combination that I think can become lethal.

SARA BLOOMFIELD: But if, there's been a way, a running theme in all of your answers, which is, to give it shorthand maybe is, what protects us or makes us different from Nazis is a system of checks and balances. And you have the State, you have perhaps the medical and scientific community, and then you have the citizenry. And all three have to be monitoring one another so to speak in this process. But I wonder. I have two questions about this. One is, how do we as citizens be educated enough to understand these issues? They sometimes seem very complex to us.

RUTH FADEN: Yeah, it's hard. It's hard.

And secondly, because they are so complex, how do we know even, do our scientists understand perhaps the unintended consequences of the paths they are headed down. I mean part of science is about going into realms of imagination and risk beyond which we understand. That's I think maybe the greatness of science as well. So if you think about this it can be very scary.

Well you can't know. I mean part of. So let me get at the first part of your answer. It is very difficult. It's very complicated. I spend a lot of my time with biomedical scientists and I put a lot of energy trying to understand their work and at a certain point I don't. And so it is hard. And the conversations have to occur over and over and over again. The media has an incredibly significant I think moral responsibility. I have huge regard and respect for science writer because I see them as you know our bridge between what the public needs to understand and what possibly could be communicated to us. But I also want to underscore and I don't mean to be Pollyana-ish about it. I think that a museum, this Museum plays a very critical role right now. This exhibit plays a critical role. Because when you talk about the past, it provides an opportunity to look at the future. So I think that's, that kind of conversation that begins with looking at something that we can all agree was wrong, and then trying to understand the echoes for what it might portend for what we experience now, that's really, really important. But let me just say one word about Sara's last comment about sciences can't always know where their work will go. Well of course not. You know, and we can't really control in some profound and ultimate way where an advance might go. So when people were figuring you know, antibiotics, they couldn't have figured out that one of the impacts of antibiotics would be this dramatic increase in how long we live. So now as a general matter people live decades longer than they did a hundred years ago. Not only for antibiotics but obviously for many incredible public health interventions of all sorts. Now we're having a conversation about whether it is good to invest in research that is actually intended to delay aging. And there are some people who think this is horrible and terrible. We ought not to be investing in research that will extend or attempt to extend how long people live. On the other hand, if you flip it around and say okay, if that's the case, let's stop looking for cures or preventions for many cancers that usually don't strike until the 60's, 70's, or 80's, most people are gonna say no, oh no, no, no, we want cures for prostate cancer and we want prevention for prostate cancer and breast cancer and all of the cancers that we know occur more frequently as people get older. Well one of the implications might be indeed that people will live longer. And is that something we want to sort of say, oh no let's, we don't really want to do that, we want to pull the brakes on that. We don't want to envision a world in which people really do live to a hundred or a hundred and twenty. And what would it be like, and what would the implications be for Social Security and retirement and opportunities for young people. All of that is well and good and if you ask somebody in their sixties whether there should be a cure of prevention for cancer they'll say yeah. So it's hard. I think that we don't mean to suggest that it's easy. But just the fact that people come out for a conversation like this gives me heart. You've got some cards.

SARA BLOOMFIELD: Yes, we have some cards. Okay. The first one is, how do you approach the question of the ethics of using the findings of Nazi research?

RUTH FADEN: I knew somebody was going to ask me that. My personal view is that we shouldn't use the findings of Nazi research. The harder part is that people have and do. And we have for example in this exhibit the brain collection, which was a very instrumental collection of brain specimens used for many pieces of research. It's a, it's a fact that people have and do. We have used the findings of research conducted under very infamous, horrible conditions by the Japanese in World War II. This came to light a couple of decades after the Nazi experiments came to light, but nevertheless, deserve their own sort of place in hell, and we've used those findings. We meaning generally the scientific community use those findings also. So my answer is no we ought not to use the findings. The fact that they have been used, then you can't take them back. You just can't take it. It's like taking, you know when you say something unkind to someone and then you say I wish I could take it back but you really can't. Once the findings are out there they're out there.

SARA BLOOMFIELD: This one is, could you comment on the ethics of resource application in terms of some people having access to cutting edge, high tech care that may do no more than extend life for a few months versus citizens in the same environment lacking access to basic services.

RUTH FADEN: That's actually a question that I've thought a lot about. You can't. These are deep questions about how fairly to allocate resources and in a context in which everybody can't have everything how you set priorities. So these are basically the, these are basically the foundational issues in what we would call rationing if we called it rationing, but we don't because we're the United States. Right. But it is rationing. If you don't, if you can't give everybody everything and we can't, how do we make choices and how do we set priorities. There is, I could talk about this for several hours so I won't. But let me just give you one way to think about it. One way to think about it is sometimes referred to as the fair innings argument. This is the argument that says that we ought first to insure, use whatever limited resources we have to insure that everybody lives to a certain age before we then spend resources to get people to live beyond that age. The notion is everybody should have their fair innings, their fair numbers of times at bat. For people who take that view, then obviously we ought to spend our resources first. You'd have to pick an age, seventy, eighty, eighty five, sixty five. It would depend on how many resources you have. You would then spend your money first and only if you could do everything possible, you know some people will get, will get killed by a car or they'll have a disease we can't cure. But once we do everything we can to get everybody to that fair inning, say at seventy five, if there's money left over we go beyond. A competing view is one that says something like, when people are at the end of their life all they have left is the end of their life. And whether they're sixty, or eighty, or twelve, all they have left is the end of their life and it means everything to them. And you have to think about where you are, and there are of course many other positions to take in between there. But those are sort of the polar opposite positions that we're all standing equally when all that we have left is our, is the rest of our life. Or do we want to step back and take the view that says no, we need first to make sure that everybody gets a crack at a fair, decent amount of life before we go further.

SARA BLOOMFIELD: I have a question and I'm gonna read the question and then add a, add something to it. This question says, what advance in modern science is, may become the eugenics of tomorrow? And I'm gonna add to it, I'm not sure he means necessarily eugenics, but maybe the genetic revolution if you want to consider that related to genetics. Is there another big thing on the horizon that could create a whole set of complicated issues we haven't even thought of.

RUTH FADEN: Oh, I'm sure there are, but let's not try to think about that now. The, I have to, I don't know who wrote the question so if I'm gonna offend you I'm sorry. I don't like the question. Because the implication of the question is that whatever happens next is it's going to be something awful and terrible. What's the next sort of eugenics movement, the next twisting of science towards ultimately an evil pursuit. That presupposes there's def-, that's definitely gonna happen. And I'm not sure. I think maybe I'm a little bit overly optimistic here, but I'm not ready to say for sure that with certainty there'll be another horrible twisting of science that will produce something like the Holocaust, the kinds of things that are evident in the exhibit. I will tell you that a lot of people worry about the pursuit of the perfect baby, the notion that we will essentially take advances in some combination of cell biology and genetics and result ultimately in a society in which children are not gifts that we receive but rather sort of products that we order up to particular sets of specifications, and we can talk more about the technologies that are proposed in doing so. Personally I am, I'm not as fearful as the world ending up that way, just because I have a deep belief that people will always want to have babies the way we've always had them. It's more fun. It's more interesting. But putting that you know to the side, that is where a lot of people you know fear the worst, that we will somehow turn the beautiful gift of becoming parents and having children into a kind of commodity situation in which we order up products, we don't like them, we send them back. Families disintegrate and what we know as the parent child relationship disappears.

SARA BLOOMFIELD: One of the thoughts that came to mind and I can't remember if it was in a conversation with you or one of the other doctors we spoke with, but the reference was there was the revolution of computers and technology. There was the big revolution of DNA and genetics. The next one would be around the brain.

RUTH FADEN: Well, without question. So let's go to a couple of issues there. I actually want to step back. Probably the, the envisioned future that frightens some people the most is the trans-humanist movement. This is the notion that ultimately we won't even look like human beings. So for people who like cyborgs and science fiction and stuff like that and it's connected to brain science. It's that ultimately we will stop looking like we look and we'll have, we'll be part machine and we'll be, we'll have all the artificial intelligence capacities and so on with emotion and we'll just, you know pick your science fiction movie. I'm also not real worried about this either. Not so much because I'm confident we won't go there, but if we go there we go there. It's gonna be, it's gonna be anything I can envision that we can stop. Many people have argued that advances in brain science will offer some of the most challenging questions for society in terms of ethics and science. I'm looking at some of my colleagues in the audience who work on these issues with me, but I'll give you a couple of examples. We, and I don't know if we have any neuroscientists in the room so you can correct me - cause I'm always, I'm willing to be corrected by my science colleagues because they know best. Not always, but I say that and it leaves me a lot of friends at the university. The, the capacity to image the brain functionally, while we're doing things, is advancing all the time and there is increasing anticipation that we will be able to use brain imaging in ways that will tell us really for sure if people are lying or not, for example. Way, way better than lie detectors. It will also help us understand how the brain functions when we make choices and decisions so that we might even be able to ultimately mechanistically tell you what happens when you make a choice, even a moral choice. And if we can do that, if we can just sort of explain what happens in the brain when people do wrong or right things, will that ultimately challenge our notions of moral responsibility, and so on. So that we can say, well you know, I didn't do it, these cells fired, these chemicals released, then those other cells fired, then some more chemicals were released, and then I killed him. And therefore, it's not my fault. I'm being, here I'm being really glib. But the ideas are powerful ones. The notion of whether advances in our understanding of how the brain works will in some sense ultimately challenge our notions of morality and moral behavior and personal responsibility, things like that.

SARA BLOOMFIELD: Sounds like and human motivation, a big issue we talk about a lot at the Museum. This actually question relates a little bit to this. And maybe you've answered it in a way. Do the advancements in medicine and science necessitate the redefinition of our moral and ethical codes from time to time?

RUTH FADEN: Well, let's, maybe better are a refinement of our moral thinking. We don't, the moral life I don't believe is static. I know that we're as, I know that I, and I'll speak for myself, I as an individual am always sort of refining and rethinking my commitments as I'm confronted with new challenges. A choice I've never had to make before or an issue I've never seriously considered previously. And so I think it's more a matter of refining our basic, settled moral considerations. I don't think the world changes radically. I don't think people stop worrying about justice or about treating one another fairly or stop worrying about being kind or stop worrying about helping others. It's just that our understandings of whether a particular advance in science or a new medical technology actually impedes or advances justice may require our thinking more, in a different way about justice than I did previously, but not that our basic moral considerations change.

SARA BLOOMFIELD: Many people, [coughs] excuse me, many people believe that behaviors like excessive alcohol consumption or homosexuality are genetic. How do we avoid the hype about science in quotes that ends up being a cover for modern social prejudice?

RUTH FADEN: I don't know, would be the short answer. I think many of the questions and challenges in genetics that are the most vexing fall in the heading of what some people call behavioral genetics. And this would go to brain science as well. The more we understand why people are the way they are or why they have some illnesses and other people have other illnesses should presumably help us improve the human condition. But as you move into certain areas I get very, very uncomfortable. The conversation around homosexuality I think is probably one of the most painful illustrations of how science has been misused and abused to the awful detriment of the way in which people have been treated over time and is really, really a serious problem. So that, you know it's hard wired whether people are gay or straight. It's a choice. No, it's genetic. No, it's behavioral, are conversations ... treated and understood out of a place in which we start by assuming that everyone is of equal moral worth and equally valuable, tend to end up in terrible places. Conversations about race have a similar tendency to become twisted, and ugly, and unjust. And so it's almost as if science gets dragged in to what is already a territory that is filled with hatred and bigotry and it's not like. I almost want to say it's not science's fault, it's almost as if you drag science into what is already an area that is filled with hatred and bigotry and disrespect and unkindness and then science just takes on the character of the convers-, of the wider conversation.

SARA BLOOMFIELD: Which is what the Nazis did. This question, related to this somewhat. To what extent does the debate on when human life begins confuse the issue of appropriate research and treatment?

RUTH FADEN: Boy this is a big one. So I very often talk about the ethics of stem cell research, where this question could easily go. And most people who lived through the last Presidential election awake a little bit of it would have heard of the stem cell debate which all of a sudden took on you know enormous political proportions in what seemed like an odd time when we were at war and had a whole bunch of other issues going on. Somehow stem cell research became as some people said the sleeper issue of the last election. There is a big conversation going on in this country. Everybody here knows it and has I'm sure thought about it a lot if not, a little if not a lot. And that is this conversation about whether or under what conditions it is permissible ethically to destroy an embryo in order to do basic biomedical research or other, well let's just say basic biomedical research which might someday lead to cures or preventions for disease. For people, that debate, the debate about the moral status of early human life takes on different meanings for different people. For some people the only issue is this question of, it's often referred to as when human life begins, but it really maybe is more properly phrased as something like when a human biological organism in it's development is entitled to complete and full moral status the way in which we treat one another. For some people the question begins and ends with that moral status starts at conception. And that's, if that's where it starts, that's where it starts. And if it starts then, then that's the answer to when life begins, which really means that's the answer to the question of when moral status begins, and any destruction of human life even in its earliest forms is unjustifiable. For other people the worry is more, the answers are more complicated. Their intuitions are more like, gee, I don't think that an embryo is the moral equivalent of a born child. Or an adult. But I also don't think it's the same as a table or a chair or even a, a cat or a dog, a non-human animal. So I don't know what to think about this. I will use an anecdote I borrow from a colleague which is a little, perhaps again a little glib. But if you're trying to sort out your own intuitions on this question, imagine that an infertility, IVF clinic is burning. It's on fire. And you're the, you're a fire and rescue person and you run back - you're the chief of, chief of the fire, let's say you're the chief of the fire and rescue people and your personnel are running back into the building. Do you tell them, when they're rushing into the burning infertility clinic to be indifferent as to whether they should pull out the frozen embryos, the patients, or they should go for the patients and the doctors, and then after the frozen embryos, if all, after all the patients and doctors are out of the clinic. Now it is glib. And some people find this example offensive. But it is a way of sorting out your intuitions and it works both ways. Let's say you got all the - Let's say your intuition's well of course you go and you get the people out, the born people out first, the doctors and the nurses and the patients. But now you can go back in again. You're going to take the frozen embryos before you take the tables and chairs and the files. Right? And why is that? So it's very complicated. It's a very complicated set of issues.

SARA BLOOMFIELD: So going to life at the other end of the life spectrum, and this question reminds me of something in the exhibition where Hitler talked about the so-called euthanasia program as it was a human rights program for those of you who aren't aware, he called it. He was giving them a right to a merciful death. Those were his words. And we might use similar words as we think about these issues. This particular question is then, should someone who's dying of cancer be allowed to take drugs that are experimental and not approved by the FDA?

RUTH FADEN: Yes, and they do. And the answer is yes they should and they do, and they do it in the context of clinical research. So many drugs that are not approved yet for general use are in fact available for people through clinical trials. That's the whole structure that we've established. I think the question is asked, the question is really directed though at drugs that are not being currently investigated and not approved by the FDA. It's, we need some sort of structure to regulate pharmaceuticals. It's hard to imagine a situation where we went only free market. So let's just say, imagine going into your CVS and every conceivable drug made by anybody is out there with very, very long pamphlets detailing the research that's done on the drug and it's a buyer beware market. Right. No, FDA is gone. Right. You've got diabetes. You've got leukemia. You've got arthritis. You've got asthma. Five thousand drugs at the CVS. No FDA. You just pick, read the stuff and pick for yourself. That kind of world is unimaginable. Who would want to function in it? At the other extreme, the notion that someone is dying, there's no good treatment, and some agency in Washington is telling them they can't have this drug, who is this agency in Washington to tell them that they shouldn't have this drug when nothing else could possibly help them. So somewhere in between here lies what we need as a regulatory mechanism that will work.

SARA BLOOMFIELD: Okay. I get the prerogative of the last question. And I want to thank our audience for great questions tonight and thank you. But my last question is to you about your parting words about all these issues, what is your guidance to us as citizens, and frankly to the students at Johns Hopkins Medical School? What is your guidance to them?

RUTH FADEN: Well I've been talking with -  I don't have any parting guidance. I'm sorry. Terrible question. It's a perfectly good question. It's just a terribly difficult one to answer. You know it's like, it reminds me of when somebody says well what is your favorite food. I don't have one favorite food. You know and I don't have on parting answer, but I will tell you what I would want for the, for our students at Hopkins, and that not just for our medical students but for all of our students, and that is that they develop the, the skills and also the disposition to want to think about the moral dimensions of the choices that they have to make. All of us grow up to be citizens and we grow up to be people who become sick and have family members who become ill, and so whether we're doctors or we're nurses or biomedical scientists, or we're just moms and dads and brothers and sisters and parents and children, and citizens, we're all going to have to make personal choices and choices for our families that have to do with moral questions in medicine and science. And then as citizens we're gonna have to vote on these issues. And so all I can ask for anyone is that they stay sort of morally attuned, morally sensitive to the ethical challenges that they're inevitably going to face and that they just struggle with them as best they can.

SARA BLOOMFIELD: That's the mission of this Museum. So thank you Dr. Faden and thank all of you tonight.

[applause]

Sara Bloomfield, Director of the US Holocaust Memorial Museum, interviewed Dr. Ruth Faden on January 13, 2005

Dr. Ruth Faden, Director of the Phoebe R. Berman Bioethics Institute at Johns Hopkins University, and the daughter of Holocaust survivors, explored the implications of Holocaust history in light of current medical innovations to enhance appearance and intelligence or prevent disease.