Talking with Bioethics Professor Jeremy Sugarman

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Interviewer: I’d like to start by asking you about your life before you became a physician. What were the things that were important to you? How did your formative years ultimately affect your career and approach to innovation?

Jeremy: I went to public schools in New Jersey and I was pretty bored. Things weren’t quite exciting and interesting enough. I thought that I probably wanted to do something related to medicine or health. I started to work as an EMT—an emergency medical technician—with the local volunteer ambulance corps. What was striking to me at the time was that even though I was young compared to the older people working on the ambulance corps, I could memorize the algorithms more quickly. I could do CPR better. I could get into the house faster. I could help extricate victims of car accidents. Whatever the emergency was, it seemed like I could do things better than the older folks, who of course weren’t really that old! It probably was sometime around that period of my life when I started thinking not just of the medical aspects but the ethical aspects.

To give you an example, we went into a patient’s house. It was an icy morning, and I remember being the one who was designated to run into the house first and then use a walkie-talkie to call out to the ambulance and tell them what to bring in.

Interviewer: How old were you at the time?

Jeremy: Eighteen. I went into the house and looked to the left. There was blood on the stairway and blood in the sink. A woman in a nightgown was shouting, “He’s in the back. He’s in the back.” I went back to the bedroom. There was a night table full of medicine bottles, a man lying in the bed, and there was lots of blood on the sheets. I touched him and he was cold—one of the first dead people I’d ever seen. So I called out to the ambulance and said, “Go slow,” because I knew at that point that there was no one to resuscitate.

One of the older guys asked me, “So what do you think we should do?” “Well, he’s dead,” I responded. “There’s really nothing we can do, right?” And he answered, “Maybe we should take him to the hospital.” “But, we’re really not in the business of taking dead people to the hospital,” I replied. He then asked me, “Well, what time is it?” It was about 3:45 in the morning. “And what time do you think the coroner works?” Around 9:00 a.m. I guessed. And then he asked me, “What’s his wife going to do until then if we leave?” So he put an oxygen mask on the man, and we carried him out of the house and brought him to the local emergency room. When we got to the emergency room, I apologized to the emergency room physician. “We’re sorry about this, but he was there at home. His wife was alone and clearly thought there was something to be done. We weren’t sure what we should do.” And he said, “You did the right thing. I’m used to telling people about this, and I can do it as well as it can be done. So thank you for taking care of him and her.” I still reflect on that moment and wonder about the interesting balance of rules and appropriate actions as well as the role of wisdom in determining the right thing to do.

I went to Duke for college and I became interested in a new field called bioethics, so I thought about putting together my own major. However, all of the professors told me that my idea didn’t make any sense, that bioethics was “a flash in the pan” and that the field was not going to be around for long. Regardless, I really wanted to learn about bioethics, and there wasn’t anyone there who could teach me. I was asked to chair a university symposium committee and agreed only if the topic was bioethics. My committee ended up raising about $10,000 to bring some of the top people in the field of bioethics to Duke for a three-day symposium. We commandeered classrooms and asked everyone to discuss bioethics in their classes. In the end, I was struck by a couple of things. First, that bioethics was of interest to most people across the university. And second, how stunningly boring some of these great scholars were when they spoke to the group. I remember thinking, “These issues cannot be this uninteresting, yet people can make it this boring.”

Interviewer: What was the key question you were after in trying to learn about bioethics? Was it a sense of right versus wrong? A need to figure out what to do when there are no prescriptive rules?

Jeremy: I think I was scratching at what the right thing was to do in different situations. When there are multiple options, what is the appropriate course? How can you best do medicine or engage in science in an appropriate fashion? There are a whole series of questions. It seemed that the world was filled with bioethics questions that needed to be addressed. At the time, “genetic engineering,” “population explosion,” and “the right to refuse treatment” were the kinds of questions with which people were wrestling. Karen Ann Quinlan was a few years older than I was when her parents were deliberating about the right things to do for their daughter. No one seemed to know quite what to do in this case, in which a previously vibrant young woman ends up in a persistent vegetative state. Scholars, theologians, and lawyers didn’t really know how to respond to that case. Those were the kinds of challenges that I wanted to work on.

Interviewer: At that time, did you have a sense that you would pursue this work once you went into medical school?

Jeremy: I wasn’t quite clear. I just knew that I wanted to learn more about it. I thought that clearly these were tough questions that somebody should know how to answer, somebody should know how to figure these out. I wasn’t clear yet what the right skill set was to be able to engage in that conversation.

Interviewer: Interesting. So, tell me about medical school then.

Jeremy: At Duke, it is an unusual curriculum in that all basic sciences are done in the first year; the clinical sciences are done in the second year; and the third year is a research year. I had this idea that maybe, because the philosophers and theologians who were present at the symposium were so boring, physician-authors might have something important to say about bioethics. Several courses I had in college were related to using literature as a means to identify and learn about ethical issues. So I thought, “Well, maybe this is the key. Maybe this is the way to go about it.” Right after taking an exam, I remember seeing an announcement from a foundation that was giving grants for interesting ideas in the humanities and medicine. Unfortunately, it was in the pre-fax and pre-email era, and it needed to be postmarked the next day. I decided to stay up another night and write an application, and I got it postmarked the next day. Sometime later I received a letter from the foundation that said in effect, “This is the most interesting idea we received this year. But it looks like it was written in a hurry. So we won’t fund it for this year.”

I thought, “Those people are pretty smart. They knew that I wrote it in a hurry.” I went to Bill Anlyan, who was the head of the Duke Health System at the time, and I said, “They told me it was the best idea they received. We have to be able to find funding for this somehow.” He said, “You know, there is a lot of merit to this.” He told me to talk to some other people and made it possible for me to get funding to spend my third year of research working on literature and medical ethics. I then convinced the dean that this would be a worthwhile way to spend my research year. I reminded him that after all, philosophy is the queen of sciences. I went to Oxford, Edinburgh, and Harvard and worked with different individuals who knew about these areas and found it really exhilarating. But I also realized that literature wasn’t going to be the only way of going about bioethics. There were a lot of skills that I needed, and it was something that still really mattered to me. When I came back and was applying to residencies, people were saying, “Well, you are doing this medical ethics thing because you want a good residency.” They didn’t understand that this is really what I wanted to do.

Interviewer: Was it from your peers?

Jeremy: I think it was both peers and the faculty. Bioethics seemed somewhat on the side. It didn’t seem as central to what people were doing, but I knew that it was.

Interviewer: Do you think it made them uncomfortable?

Jeremy: I don’t know. It may have made them uncomfortable. They may not have thought it to be a solid career choice. They may have been worried that it was fuzzier than clinical medicine or medical research.

Interviewer: You had had one year of clinical experience before you did that?

Jeremy: Correct.

Interviewer: How did that trajectory affect your view of bioethics?

Jeremy: It was all part of a whole. Later as a medical student, I remember starting some projects that were informed by my research year. For instance, I had heard patients using terminology that I didn’t “know,” including malapropisms and slang. For example, patients might describe fireballs of the Eucharist instead of fibroids of the uterus; or smiling mighty Jesus instead of spinal meningitis; very close veins instead of varicose veins; and the insensitive care unit instead of the intensive care unit. I realized that while these might be funny, there was also some truth and meaning to these terms. Right? Why should, say, a parent know that their child’s disease isn’t called sick as hell anemia but sickle cell anemia? I asked my classmates to write down the malapropisms they heard so that I could catalog them, ultimately to be able to improve our communications with patients. I did the same thing with slang that was being used. I remember going into a patient’s room and saying, “Do you have anemia?” The patient said no. The attending physician later asked, “Do you have low blood?” The patient would say yes, indicating that the information I had was incorrect. Similarly, I might ask someone, “Do you have hypertension?” They would say no. The attending physician would later ask, “Do you have high blood?” And the patient would say yes. We know that lots of people are anemic and hypertensive. But you can’t sensibly walk into a patient’s room and say, “Hi. Do you have high blood and low blood?” You don’t make any sense to the patient. We ultimately published our findings in the North Carolina Medical Journal, and got a lot of national attention. Even as a medical student, I was asking strange questions and publishing.

Interviewer: Why did you pick internal medicine for residency?

Jeremy: Actually, I first did a year of gynecology, and then I did internal medicine. I liked the combination of medicine and surgery in gynecology. I liked the idea of treating across the whole lifecycle. I later got attracted to internal medicine because of the diagnostic puzzles. The diagnostic puzzles in medicine were ultimately more intriguing to me than the technical challenges in surgery. It turns out that my experience in gynecology probably helped me be a better internist.

Getting back to bioethics, during my residency at Duke, I got some help from some of the faculty members at University of North Carolina. We put together a group in the Research Triangle to look at emerging questions in bioethics. When I finished my residency, I began to work at the Durham Veterans Administration hospital. While there, I worked on a survey regarding living wills. I was starting to figure out what I needed in order to do bioethics well. I realized that by doing a fellowship in internal medicine, I could learn how to do social science research. But I also knew now that I really needed a formal background in philosophy.

So I came to Hopkins. There was a fellowship position open in the Division of General Internal Medicine. I met with David Levine here, who was the head of the division. I told him what I needed: I needed a degree in public health so I could learn the tools of social sciences, and I needed a degree in philosophy so that I could understand how best to think through the relevant conceptual issues. He got it. He found some money to support both degrees. So, during my fellowship here, I did a master’s at the School of Public Health and a master’s in philosophy at Georgetown. I did both so that I could speak the different languages of social science and philosophy. After finishing my fellowship, I went back to Duke to start a program in medical ethics, which later became a center in the School of Medicine.

Interviewer: Tell me a little bit about learning philosophy at Georgetown.

Jeremy: Members of Georgetown’s philosophy department were among the first to really get deeply involved in bioethics. Some of the leaders in the field were there. It was great to leave my white coat behind at Hopkins and be among people who were mostly wearing black and thinking hard about bioethics and philosophy. It was completely different from medical training. It was hard. It was deeply interesting to figure out how best to argue, to understand what ethical theory had to offer, posing real challenges to our quick ways of making decisions in clinical and research settings. I found professors there who were leading scholars, who had done different types of work, and I found ways to spend a semester learning from them, in class or tutorials. That turned out to be a rewarding way to study. I just wanted to learn.

Interviewer: Would you say that most of your colleagues in the philosophy program had as practical a bent as you did?

Jeremy: There were some people around the Kennedy Institute for Ethics at Georgetown who had practiced medicine. But a lot had not. Some had worked in health care settings. Others were basic philosophers. It’s just like a school of medicine, where there are basic scientists and clinical scientists.

Interviewer: After you learned the nomenclature of the language and internalized the philosophical approach to argument and debate, how did you then take what is essentially a theoretical framework and apply it to medicine?

Jeremy: In a variety of ways. When I approach a new problem, whether the problem is going to be one that demands conceptual work or empirical work or a combination of both, it is with a conceptually informed empirical approach, or vice versa, an empirically refined conceptual approach. So I think that dual training, if you will, provides an opportunity to do better work using different and perhaps improved methods.

As an example, in 1999, there were some reports in the media that a surgeon at Vanderbilt had done a series of repairs of spina bifida in utero. In what was being called fetal surgery, he was going in utero and repairing the defect in the spine with the idea that, if the spinal defect of spina bifida was repaired in utero, there wouldn’t be exposure of the spinal cord to amniotic fluid and that maybe the children who were born would have less adverse outcomes. This was featured on the cover of Time magazine. What you see is this remarkable image of a surgeon’s finger and a fetal hand grasping that finger. You can see a similar image on the ceiling of the Vatican with Adam and God. It was such a powerful image that it attracted lots and lots of attention. At the same time, some researchers at the Children’s Hospital of Philadelphia had done a few of these procedures. They were preparing to do a randomized trial to find out whether this approach was indeed better. While the surgeon at Vanderbilt saw this as surgical innovation, something that should just be introduced into practice, the researchers at the Children’s Hospital of Philadelphia and some of their collaborators at the University of California, San Francisco thought of it as something that was experimental that needed to be sorted out in a research paradigm.

Well, with all the attention that was being focused on this in the popular press, people were flocking to clinical centers requesting the procedure. Hospital administrators around the country were talking to their neurosurgeons and saying, “Can you just do this?” But the neurosurgeons didn’t have any experience doing this kind of surgery. Therefore, the question was, What was the right way for this to move forward? All we had were case reports from two places, one from a magazine. It wasn’t the kind of evidence that we need when the stakes are really high.

Bob Cefalo, an obstetrician/gynecologist from UNC who was interested in ethics, and I were asked by Duane Alexander, who was heading the National Institute of Child Health and Human Development at the NIH, to put together a conference to guide what should happen next. So we assembled a group of folks who knew about the relevant issues, including experts in spina bifida, obstetrician/gynecologists, neurosurgeons, people who knew about child development, ethicists, and lawyers. Over a couple of days, we got a better understanding of the issues and some consensus about how to move forward. What came out of this initial conference was first a conceptual paper, and then survey work, to inform the next steps. One of the first conceptual matters addressed at the conference was that the procedure should be called maternal-fetal surgery, not just fetal surgery. At a very basic level, you have to cut through the mother to get to the fetus. If you’re not measuring the outcomes, the certain measurable harms to mothers, then you’re not getting a complete picture of what’s going on. We also realized that, historically, maternal-fetal surgery had been used primarily for fatal conditions. Spina bifida isn’t a fatal condition. So, the extent to which you might expose the fetus to risk for a nonfatal condition was different than if it were surely to be fatal.

There was consensus at the conference that this procedure should probably not be treated as surgical innovation but instead as research, and that a formal trial was really needed. However, we needed a bit more information from the field to ensure that we were correct. Therefore, we did a survey of maternal fetal medicine specialists. The majority of those specialists thought that this was clearly something experimental and clearly there were insufficient data to counsel parents about the appropriate time for repair, either prenatally or after delivery.

As a result of the conference, a decision was made to actually put a moratorium on this procedure until the randomized trial was conducted. We got involved in helping to design a randomized trial, which was just published this past year, after a decade. It was called the MOMS Trial, and it showed that there is a slight advantage to the prenatal repair, but the outcomes for these children over the longer term, who will hopefully become adults, remain to be determined.

Interviewer: So that must have set up a good model for how to move forward then?

Jeremy: Exactly. I’ll give you one other example. There was a young boy who was born in North Carolina with Fanconi’s anemia. It is a disease that is amenable to treatment with bone marrow transplantation, but there was no match for this child anywhere in the country. The child came to a clinic that was being run by JoAnn Kurtzberg, who had been doing basic science work on umbilical cord blood. She and other scientists around the world thought that umbilical cord blood might be a source for stem cell transplantation, yet it had never been done in a person. She noticed that the boy’s mother was pregnant. So she asked the mom if, after delivery, she could collect the cord blood, the umbilical cord blood, and if it was a match, would she consider having her child be the first one to receive a cord blood transplantation?

As luck would have it, they got a good sample of the cord blood, which was a match for the child. The cord blood was processed at another lab in the United States. The family then flew to Paris, where Eliane Gluckman, who had transplanted more children with Fanconi’s anemia than anyone else in the world, did a transplant with the cord blood. So this was a collaborative innovation that was being envisioned. It was just a slight shift in practice, from using bone marrow to using cord blood for transplantation, based on animal models.

The results were great and were published in the New England Journal of Medicine. The kid who was transplanted is still alive today and doing well. Ultimately, this approach has helped a lot of people. JoAnn came to me, though, when I had just gotten back to Duke. She said, “Listen, we did this case … I want to understand some of the ethical issues associated with cord blood banking.” So we got together and wrote a paper outlining some of the basic ethical issues associated with cord blood banking to be used as transplantation. We sent it to JAMA and got back a request, about two weeks later, for more words! I knew we were on track when JAMA asked us to write more. In that paper, we outline some of the basic issues. For instance, since cord blood is usually thrown out after delivery, why can’t we just use it for transplantation? Well, what is different about using cord blood was, first, that there are deep, rich, cultural traditions around the globe with respect to the placenta and how it should be treated. They need to be respected. It’s not just waste. Even in parts of western North Carolina, there is a folk belief that if the placenta is dropped, the baby will be stupid, or if it’s turned around, the baby will be crazy. And so if you can assure people that the placenta will be treated properly, you’re more likely to be able to build an appropriate bank.

The second issue was that in order to use the cord blood in another individual, you’ve got to make sure that that cord blood is safe. You don’t want to expose the recipient, who has now been immunosuppressed, to cord blood that might be infected with hepatitis, HIV, or a genetic disease. So now you need to test and quarantine that blood for things that may or may not relate to the health and well?being of that infant, which raises questions about what you tell to parents. First of all, you now are going to be testing this child for diseases that may or may not require intervention. You may have false positive results on those tests. If perhaps in the screening that you are doing on the cord blood, you identify a genetic disease that may manifest itself later on in life, do you tell the parents? Third, whether people should privately bank or publicly bank and who would have access to it and the like, also are important. All of these questions came out of this seemingly easy idea.

Things continued to get more interesting over time as the industry of private cord blood banks grew. We also realized that in order to address the next generation of questions, we put together a consensus conference where we brought in those folks with appropriate expertise. We published a consensus document a couple of years later in JAMA to outline where the field ought to be going. At that time, we also realized that there were empirical data we needed to guide what the informed consent process should look like for cord blood banking.

The practice being used to develop some diverse cord blood banks was to simply take cord blood and then ask for permission to keep it afterward. I found that unsettling. It is typically better to ask someone first if I may take something, rather than taking it and then asking, “Can I keep it?” To assess the relevant issues, we conducted focus groups with pregnant women in North Carolina to see what their informational needs would be with respect to cord blood and cord blood banking. In these focus groups, the women told us things like, “It is better to ask us before delivery” but also, “Don’t ask us before 28 weeks of pregnancy, when we are not sure if the baby is going to be safe….We don’t want to hear about sick children right then. We are worried about a healthy baby. So wait until after 28 weeks and then ask us about it.”

In addition, even though there were hundreds of cases that had been done as innovation, experts agreed that it was time to actually do some experimental work, to really show how cord blood compares to other types of transplantation. A national trial was developed that looked at safety and efficacy of umbilical cord blood compared to bone marrow. I got involved in some of the ethics of the design of that trial, and also examined the informed consent process for it by interviewing women who had given consent for cord blood banking to see what information they retained at different intervals following delivery.

So, what you’re seeing is a pattern. Sometimes conceptual work is needed, sometimes empirical work is needed, and sometimes they iterate to refine understanding and policy.

Interviewer: Given how complex these issues are, can you comment on where you see the field heading?

Jeremy: I think one of the nice things about being in a place like Hopkins is that people are doing so many interesting things. So if we’re on the cutting edge of science or medicine, it’s great to be engaged with the ethical issues at the beginning of those processes. When scientists say, “I’m worried about this, but I don’t know how to articulate what the ethical issues are,” that’s precisely where bioethics should get involved. Some of the work we’re doing here on the ethical issues in stem cell research, for example, comes out of scientists coming forward and saying, “We know that there are ethical issues around stem cell research that people have discussed, but these are the ones that we’re concerned with now.” I think, good bioethics is associated with being involved with scientists who are comfortable exposing their science to ethical inquiry. It’s going to happen sooner or later. We might as well get the ethics right from the beginning. I think we’ll always be on the edge of discovery, and I think that’s why bioethics is going to have an important future.

Interviewer: How do you avoid having bioethical issues impede progress and innovation?

Jeremy: Good question. First of all, sometimes it may be appropriate for the bioethicist to say, “This isn’t OK.” And sometimes it’s appropriate to say, “It’s OK.” So the goal of doing bioethics well is to put the brakes on only when the brakes really need to be put on. Not to test the brakes along the way. You may not always get that right. The goal isn’t solely to be the person stopping things. Bioethics is also concerned with making sure that people are treated well, quickly, and appropriately.

Interviewer: What do you think the biggest obstacles are today in terms of implementing bioethics in today’s research climate?

Jeremy: There are a couple of obstacles. As you point out, research funding is hard to come by anyway. The advantage of bioethics is it’s less expensive. We don’t typically need high-end technologies to do our work, which is a plus. I think if we’re doing our work on the ethics of research or science, then it sounds familiar to places like the National Institutes of Health. It is science. When we are working in other areas, such as the ethics of clinical practice, it is harder to identify research funds. It is also difficult to find funding for conceptual work in bioethics.

Interviewer: Thank you—is there anything that I haven’t asked you about that you’d like to discuss?

Jeremy: I want to talk briefly about a little bit of work on international HIV prevention, which is another extreme from the cutting-edge clinical and scientific issues we have been discussing. One of the other hats that I wear is chair of the Ethics Working Group of the HIV Prevention Trials Network, which is a global network funded by the NIH to do HIV prevention studies around the globe. One of the things that we have done in the Ethics Working Group is to create an ethics guidance document for research to help researchers in the field negotiate every stage of the research enterprise, from the beginning of the idea all the way to dissemination of results so that they can help design and conduct their trials in an ethically appropriate way. What we have realized, through that work is that it is best to join the project—that is, we have one member of our group join the protocol team. That person is engaged in answering the questions that investigators have or potentially identifying ethical issues in real time. So, to go to your earlier question about facilitating rather than just impeding research, eventually, if you do have a problem and it is at an approval stage, your delays are going to be substantial.

I was recently involved with the trial among injection drug users in border regions of China and Thailand that was testing whether treating injection drug use can decrease HIV transmission? The rates of HIV sero?incidence, when the trial was designed, were extraordinarily high in these regions. And it was a stigmatized population that faced enormous risks. In order to start the trial we had to make sure that we could ensure the safety of those people enrolled. In order to determine if we could, we first commissioned a formal policy review. We had lawyers who specialize in international law, human rights, and the like evaluating what the existing conditions would be. We then did community consultations and visits to assess safety and included law enforcement personnel to learn how they would deal with injection drug users who were enrolled in the trial. The trials have involved a series of visits, sustained interaction with communities to ensure that the participating folks were safe. This was critical as we were trying to do a trial addressing an important public health need. We have to be there to know. We can’t just be on the outside looking in.

Interviewer: That’s very well said. As a physician, when I think about clinical medicine, I have always felt that we have so much field evidence and practical experience in how to take care of a sick person but less in the way of big-picture framework. It is without a really systematic approach.

Jeremy: Right. You have rich experiences to draw upon, which is fantastic. We don’t need to provide more experience for you. But we may be able to provide frameworks, based on the tradition of ethical thinking developed over at least a couple of thousand years, for how to approach these tensions that come up. It’s in part a matter of teaching people that there are systematic ways of thinking about these problems. There are ways of coming up with a better answer. It doesn’t mean that everything is always going to be OK and that all problems are going to be resolved and that the hard cases will always be cracked. They may not. There may be signs that there isn’t a single right answer. But as long as you know that you have at least one of the right answers, we can feel a little bit better about how we are going about practice or care.