Dickert, Neal (2026)

BA: Good morning. Today is April 24, 2026. My name is Brittany Acors. I am a postdoctoral fellow in the Department of Bioethics in the Clinical Center. Today I have the pleasure of speaking with Neal Dickert. Dr. Dickert was the first post-baccalaureate fellow in the Department of Bioethics at the NIH Clinical Center, beginning in 1997. He is now the Thomas R. Williams Professor of Medicine at the Emory University School of Medicine. He also holds appointments in the Rollins School of Public Health, the Emory Center for Ethics, and the Emory Clinical Cardiovascular Research Institute. His research focuses on ethical issues relevant to cardiology practice and clinical research, particularly informed consent in acute care contexts. Thank you for taking the time to talk with me today, Dr. Dickert.

ND: Thanks so much. Happy to be here.

BA: Starting off early in your career, can you tell me about what led you to Dartmouth College and what you studied there?

ND: Probably the simplest reason for why I went to Dartmouth was I really enjoyed the environment. I grew up going to a family camp in New Hampshire in the summer and always thought it’d be a fun place to go to college, and it aligned with a lot of what I was looking for in school. In terms of what I studied, early on I was really interested in philosophy. I don’t know that my reasons were particularly sophisticated, but I felt like I was excited to have the opportunity to think about big questions and important things. I gravitated pretty quickly to ethics. I didn’t really have any thoughts about going to medical school. Actually, I thought everyone who was planning to go to medical school seemed like they weren’t really enjoying the things they were working on in college.

I really enjoyed philosophy and thinking about big questions. I honestly thought I probably would wind up going to law school. I guess my junior winter, in a pretty random way, I started thinking about how I wanted to spend my time. I started thinking a lot more about the prospect of having a real impact on individual patients’ lives. The more I thought about it, the more I got interested in medicine.

BA: Great. Did your family have any background in medicine or pressure you to go that direction?

ND: No, my family was wonderful in many ways. One of those is that I don’t think I ever felt any pressure from my parents or anyone else to do anything. I sometimes joke that I feel like I’m a conglomeration of all my family’s interests, because my father is a lawyer who became a judge, and my mother is a teacher. I had one grandfather who was a priest, one grandfather who was a doctor, and two grandmothers who were teachers. So somehow an academic bioethicist feels like a conglomeration of all those things. I like to think maybe I’m the result of all those influences.

BA: No, that’s so true. You really combined all of those backgrounds.

ND: Yeah, yeah.

BA: After college, the story I heard in other departmental oral histories is that one day, Zeke Emanuel and Christine Grady got a call from you asking whether the department had a post-baccalaureate fellowship program, and they had to figure out how to make that happen. So how did you decide to take that leap, and what do you remember about that call?

ND: It’s funny, there are different perspectives. I think they’re probably all right, but very different in terms of the perspective. What I can say about it is that, when I was a senior at Dartmouth, I had, as I mentioned, made this shift to medical school. I really had no background at all in bioethics, but I knew I wanted to be a doctor, and I knew I liked ethics, and I thought, well, I should like bioethics. I also had a plan to move to DC, because I still had to take organic chemistry, take the MCAT, that kind of stuff. So, I knew I had a year or two between college and medical school.

I randomly found what was then the Office of Genome Ethics at NIH that Ron Green had headed up. I emailed them, and I said, do you have any opportunities? And he told me, “Well, we’re sort of closing up shop basically, but there is this office, the Department of Clinical Bioethics, that is going to be started up by Zeke and Christine, and I can put you in touch with them.” He said, “I’m also, by the way, a professor at your school,” which was not what I knew at the time. At that point in my life, the idea of people having two jobs was not something that was a familiar concept to me.

Anyway, I reached out to Christine, and we had this phone call. I sort of said what I was interested in, and she said, “Well, we’ll have to think about it.” I remember her saying something at one point, like, “We’d love to find a way to have you come join us. I’m not sure how we’re going to pay you or what we’re going to do.” I think that’s maybe the point at which the stories start to diverge a little bit. But I guess Zeke and Christine were able to work out an opportunity for me to be a pre-doc fellow. That’s how I came to join. Bioethics was not some well-formulated vision for me. I just felt like the two sides of things, the medicine and ethics pieces, were both interesting to me. And I thought this would be a great way to spend a couple years.

BA: What did the department look like when you first got here in 1997, in terms of space as well as personnel?

ND: Yeah, it was sort of a magical thing for me in the sense that when I joined, from a space perspective, it was all in one corner of what’s now the department, over where Dave [Wendler]’s office is. There was a total of four offices that I think nine people shared. There were two other postdoc folks who came in: one a lawyer, one a philosopher. And then I was a pre-doc. There were then, I guess, six or seven total faculty. It was very small, and everything was done together from day one. The seminar series that still exists today started then, but it was all of us. They were inviting leading figures in bioethics from around the world to come in. It was really cool. It was a cool time for me, as someone with no real background, to all of a sudden be thrown in and thinking through scholarship in bioethics with a bunch of really smart people who actually knew what they were talking about. It was really fun. I remember the first seminar, Tom Beauchamp came. I fortunately didn’t embarrass myself by mispronouncing his name, which I surely would have done if I had had the opportunity. I remember Zeke said, “Well, why don’t we have our fellow ask the first question?” I just remember thinking, I don’t have any idea how to even start this conversation. [laughs]

BA: Yeah, he just threw you in the deep end a little. [laughs]

ND: Yeah.

BA: When you started, how did you understand your role and responsibilities as a fellow at NIH?

ND: I don’t think I had any idea what my role or my responsibilities were [laughs], and nor, in truth, did they. In a wonderful way, they just wanted to bring in young people who wanted to develop interests and careers in this space. I think we kind of created it together. I can share a couple things that are relevant. I was eager to be involved in the consult activities, so I would do that. We came up with a plan for me to have an IRB [Institutional Review Board] partner as well, so I did get involved [with that]. Before Frank Miller joined the faculty, he was my IRB partner in the National Institute of Mental Health IRB. I would participate in the consult activities, and there were some small service things that I did. There was actually a project that developed out of this. The department used to get all of the advance directives that would get filled out within the Clinical Center. I would file them, and I started looking at them, and we realized that they were often pretty problematic. There was this line where you could fill in whatever you want, so we would see advanced directives that would say things like “no machines,” and it became pretty clear that those were ambiguous. So, we started consulting with people who wrote what looked like really problematic advance directives, and help them to clarify it. That actually led Dave and me to do a project that wound up being published in JAMA [Journal of the American Medical Association], looking at consent approaches to organ donation, because often people would write preferences about that and we didn’t know what to tell them in terms of whether they would be followed. That was one kind of service piece that I did when I was there.

From a research perspective, I was tasked with the idea of studying payment for research participation. I did not come up with any plan to research that, but it’s something that Zeke and Christine were thinking would be good for us to work on. So, Christine and I started working on that, in collaboration with Zeke as well, and developed a portfolio of research in that space. That was the thing I spent my most of my time working on.

BA: Payment has been a major topic over the last 25 years. Are you still involved with that, or do you have a sense of how it’s changed over time?

ND: Yeah, it’s a good example of academic humility, right? Both academic humility and progress, I think is the right way to say it. When Christine and I wrote our first paper on it, there was some earlier work on it that was very skeptical of the idea that payment was even appropriate at all. I think our work and others’ through the years have helped to understand it more clearly and set up some frameworks for people to think about this in ways that made more sense than before, along with a lot of just general shifting and thinking about research. I think those things happened simultaneously. I am still involved with it. Some colleagues and I were very close to being able to do a randomized trial looking at the impact of different payment strategies recently. There were some logistical reasons why that couldn’t happen. But I still feel like we need evidence on how to do this well. It still takes up a lot of people’s time. It’s still probably the topic that I get asked to talk about as much as almost anything else. I think what’s interesting, though, is that it’s really moved away from this notion of “is it ever OK?” We’re now in an age where we’re actually thinking about it as a justice-enhancing measure as opposed to a problematic issue. So, I do think there’s been a lot of shifting in the thinking. It’s been fun to be a part of that and to see that evolve, even though I think it’d be nice if it hadn’t taken 25 or 30 years for us to make progress, and it would be nice if we had an apparatus for being able to develop evidence faster so that we can do this right. Still super interesting, still something that I feel like I’m passionate about and still enjoy thinking about. It’s also really cool to see how it’s progressed since Christine and I wrote our first paper on that in 1999.

BA: It was a good topic to be tasked with very early on.

ND: Yeah!

BA: What changes occurred in the department during your two years of the fellowship?

ND: A lot. As I mentioned, we were in this back corner of the building. By the time I had gotten there, Zeke had plans to do the construction to turn it into the space that is now. There’s been some evolution, but the basic space that is there now was in planning, so I went through the construction. One interesting thing is that Zeke and Christine had to push for it to be constructed the way it is now. The idea that there was this big open space where people would have tea every day and meet and talk about things was really central and very intentional. I will say it’s really stuck with me to see the importance of having some common space and the importance of people having a place for informal conversation. I think the department’s a model for that, and I think it’s been hugely successful. The transformation of this tiny little corner into a really lovely office space that promotes collegiality and discussion, I think was really exciting.

In terms of numbers, there were certainly additions of faculty, multiple faculty members each year while I was there. Also, the growth into having a true standing fellowship program with a couple of post-docs and a couple of pre-docs each year, that growth happened while I was there. So, it grew really fast. It was really fun to be a part of that early in my career. I was part of interviewing people for positions, and, in certain ways, I probably had no business doing that. But I think that stuck with me and is also pretty cool. I think that’s still an operative concept in the department, that you bring young people who are excited about growth and who are smart and responsible and give them responsibilities and let them grow. That was really fun, and I felt like I was included in and part of a lot of growth in the department.

BA: Did other post-bacs join while you were still here?

ND: Yeah, there were a few that joined. My first year I was the only one, and then the second year we had three pre-docs join [Jonathan Rackoff, Karen Titlow, and Ingrid Burger]. Jonathan and Karen were in general program like me, and Ingrid was in the genetics program under Ben Wilfond. So, it grew fast.

BA: Do you have any other particular memories that stand out from your time as a fellow?

ND: Yeah, too many. There’s a couple that I think stick out. One funny story: Marion Danis, who was in the department for many years, was a mentor for me, like everybody in the department was. I remember, it was probably two or three months into my position there. Like I said, everything was very small. I remember one day the door was cracked in Marion’s office. I saw her feet sticking out from underneath the table, and I was worried she was dead on the floor. I sort of barged in, like, “Are you OK?” She was taking a nap. And we had this lovely discussion about how she had figured out that taking a nap in the afternoon was really helpful for her and helped her focus. It’s one of those lessons I’ve taken with me ever since. I’m a big proponent of afternoon power naps, and I thank Marion for teaching me that, and also for the really funny memory of seeing her asleep on the floor.

The other thing that was really nice and was formative for me was there were a number of us that used to go for runs in the middle of the day. Zeke and I used to run a lot together, and Dave would sometimes join us, and Don Rosenstein as well. I think that, plus teatime conversations and whatnot, were really important for me. They instilled in me the importance of young trainees having the opportunity to have informal relationships that develop, and opportunities for casual conversations and growth and personal connections that really form the basis of valuable professional relationships over the years. Those were really important for me. Those are some of the really fond memories I have of my time there.

I also remember the many times Christine would bring her girls with her to the office. She has always been a role model for me of someone who found a way to be incredibly successful from a professional perspective while remaining deeply committed to and engaged in the lives of her kids.

BA: Those are great. After your fellowship ended, you attended Johns Hopkins for an MD from the School of Medicine and a PhD from the School of Public Health. Why did you choose that path, and how did you balance the requirements for those two degrees?

ND: When I showed up as a pre-doc fellow, I didn’t have a plan to become a bioethics researcher in any way. I thought, this is a really interesting aspect of medicine. I wanted to be a doctor in part because I really liked the idea of seeing patients each day and feeling like I made a difference in their lives. I didn’t want projects that lasted for years and never ended. So, it’s ironic that I wound up becoming a researcher, right? I still value the other part too, but I totally fell in love with doing ethics research because of the great opportunity of doing work with these great people. That absolutely transformed what I wanted to do with my career. That’s why I did the MD-PhD.

It was an interesting process. I was fortunate to have a lot of mentorship from the faculty at NIH about how to how to think through my graduate training. One of the reasons I did the MD-PhD program at Hopkins specifically was because the PhD program in bioethics and health policy that’s there offered a combination of empirical and conceptual training. I spent a lot of time doing both. I was really debating whether to do a PhD in philosophy or something with more empirical training, so this offered me the opportunity to do a bit of both. It’s one of the reasons I chose that program, and I think that was a good thing for me, especially thinking about how to develop an academic career with funded scholarship in the context of being in a school of medicine. That was a big part of it, and obviously the faculty that I knew at that time. I also had a lot of access to faculty both at Hopkins and at Georgetown because there’s a long standing-connection between those two. Some of the conceptual training happened at Georgetown — that was routine within that program. It felt like the best of both worlds in terms of being able to give me a diverse skill set for doing the kinds of scholarship I wanted to do and also the medical training that I wanted.

BA: Did you do degree requirements simultaneously or go back and forth between more medical and clinical rotations?

ND: There’s an MD-PhD program that lots of institutions have called the Medical Scientist Training Program (MSTP), so I was an MSTP student at Hopkins. The traditional way of doing that — and schools vary more now than they did then — was usually you did your two pre-clinical years in medicine, then you disappeared for your PhD for however long it took you to do that, and then you came back to do your clinical rotations. The only thing that was different for me was that I did request for the MD-PhD program to let me do three years of medical school first before doing the PhD because I felt like, given my focus in ethics, I really wanted to know what I wanted to do clinically before I picked what I wanted to work on in my PhD. In particular, I was trying to decide between adult medicine and pediatrics, and I felt like I needed to make that decision first.

Fortunately, I will say, at Hopkins, both the PhD side where Nancy Kass was my mentor and the MD side were incredibly respectful of me in terms of letting me and helping me to figure out what was going to be a good path for me. They were very flexible in ways that a lot of MD-PhD programs wouldn’t have been. So, I did do three years first, and then I did my PhD training, and then for the last year I did a little bit of both. It was segmented, but in a little different order than what had been the tradition at the time.

BA: Got it. After you had spent two years here in the Department of Bioethics, what did you most notice about bioethics education in your medical school curriculum?

ND: That was really interesting. I got frustrated in medical school. I felt like I had been surrounded for two years by a bunch of people who felt like these are questions to which we should work to try to get better answers, whether that’s greater conceptual clarity or doing empirical research to actually uncover facts that made a difference into what the right approach to various situations were. I felt like a lot of ethics discussion in the context of medical training was, “Oh, here’s some principles you can sort of think through. There may or may not be right answers.” I didn’t feel like it was presented as an area where we could make progress, where we could answer questions, where there were better and worse answers. [laughs] So that I found kind of unsatisfying. Hopkins has a strong bioethics curriculum that has only grown, but what medical students got exposed to, I think, was not that this was an area of cutting-edge work or scholarship or that kind of thing. And I felt like it should be, so that felt a little bit unsatisfying to me. That’s probably my strongest reaction.

BA: Now that you’re a professor in a School of Medicine, do you feel that the curriculum has engaged more with bioethics as a field as it is now?

ND: Yeah, I think so. The field of bioethics has grown a lot in the last 25 years or so. People are much more aware of it. It’s much more common as an area of scholarly focus. I think institutions recognize it. Certainly, empirical bioethics has grown a lot. I still have a lot of people ask me, “How do you do ethics research? That seems really weird, how do you do that? Interesting stuff, but how do you answer questions?” I think that’s probably still the case. In my own work and teaching in the medical school, I often integrate data on things that people are struggling with and talking about and really try to help people think through that and incorporate evidence into their approach. So, I think in my own space I try to do that, and I think in general it’s something people have shifted on.

BA: Great. While you were writing your PhD dissertation in the early 2000s, you came back to the department about weekly, about an hour from Baltimore. Why did you do that? And what do you remember about the department during that time?

ND: Yeah, I mean, it was such a great environment. I had very real personal connections to folks there. It felt like home from day one and sort of still felt that way. The reason I started coming back down was mostly because I forget exactly how I had these conversations, but I had talked to Christine and Zeke at one point and was in the process of trying to sort through what I was going to do my dissertation on. There was a potential collaborator down there, and so I came down to kind of meet with them. I got interested in research with dead and newly dead people and cardiac arrest and this kind of stuff. So, I came down to meet with a couple of folks, and in that process, had some conversations about feeling pretty isolated working on my dissertation. It was different when I was going through coursework and whatnot, but they basically said there’s an extra office down here right now if you want to spend a day or two a week down here and have an environment where you have people around to bounce ideas off of.

I really needed that as a way to get out of my head instead of sitting in my house, working on my dissertation. I had a great environment at Hopkins — the faculty I worked with and some of my co-students were truly fabulous. But it was nice for me to have a place to go and have a network of folks that I could take a break and sit down at tea in the afternoon with and talk about what was in my head or other things. It was really good for me and got me more engaged with people. It was really a helpful thing for me at that time.

BA: Some really intentional community space as well as dedicated dissertation time.

ND: Yeah, yeah, that’s just really hard to recreate. It’s a special environment, and it was nice to be able to take advantage of that. It was just an hour away, and I could work on the train, so it didn’t feel totally inefficient. I think, especially in a day of virtual work environments, people say that’s crazy, to commute an hour just to sit in an office and work with people. It actually stuck with me as something that’s really important. I still am someone who likes to be in a more interactive environment. I don’t find working at home a whole lot of fun. [laughs] Work is about the people and the conversations you have.

BA: Your dissertation focused on the principle of respect for persons in emergency settings. Why did you choose that topic, and what did you say about it there?

ND: It’s interesting. I mentioned before that I had gotten interested in this notion of research with nearly dead and newly dead people and, in the context of emergency work, people who weren’t conscious. It became pretty clear that the operationalization of the principle of respect for persons in bioethics is largely focused on autonomy. It seemed to me there was something missing. When we use the words “to respect people,” respecting them as decision-makers and autonomous agents is only a small portion of what we mean. I wanted to unpack that more, and think about what else it could mean: what would it mean to respect someone who was dead, or a body who was dead? What does it mean to respect someone when you’re resuscitating them? And then, by extension, what about when you’re doing research with people who can’t make decisions for themselves because of emergencies? It felt like a lot of the ethical work was in this notion of respect for persons, but we had an under-examined sense of what that meant. It was a really nice way of focusing on some margin cases to look at what respect means. It’s been helpful for me to think back then about what it means to respect people who can make decisions for themselves too.

I came up with a bigger, or what I thought was a more expansive, notion of respect that was about recognizing what’s valuable about people, what that entails in our interactions with them, and what kinds of actions do and don’t express that. The expressive value of different kinds of actions was something that falls out of that, and I think it’s an important notion of what a lot of us mean when we talk about respecting people. I did some empirical work as part of my dissertation, and that certainly came out when you talk to people about their own experiences and what constituted respectful and non-respectful behavior, especially in the context of these kinds of emergencies.

BA: That’s really interesting. We think of “respect for persons” as largely autonomy, where someone is making a decision and you’re respecting it. But when you are no longer able to make decisions, what does that look like?

ND: Yeah. I think it’s a good example, too, of how there are a lot of things like this in bioethics, where just the fact that people use a word one way doesn’t necessarily mean that’s what a concept includes or needs to mean. Sometimes [empirical research] is a really nice window into blind spots, especially when the concepts do tie together. It deeply informed my thinking on what that meant.

BA: After graduation, you specialized in cardiology. Can you tell me about that next step and why you chose it?

ND: I got really interested in cardiology as a medical student, and that’s why I focused a lot on research in acute care situations. These were sort of co-evolving, because it did matter to me that what I was interested in pursuing from a scholarly perspective lined up with what I was interested in pursuing from a clinical perspective.

One thing I liked about cardiology is that it’s pretty mechanistic and tangible. Maybe there are some things about electrophysiology that are a little different, but in general, it’s a pump and pipes. It’s a closed system. Maybe I’m just not a very smart person, but it’s a pump with valves and pipes, and you can sort of figure out what happens in one part of the system if you know what’s happening in another. You can kind of reason through it. It’s also pretty tangible, like when you listen with a stethoscope, you actually know what you’re listening to. It’s like a machine that’s pretty cool. I liked the physiology. It made sense to me in a way that some other aspects of medicine felt pretty abstract.

The other thing is I feel like cardiology is a field where you take care of young people and old people. You take care of people with chronic illness and very acute illness. There’s a space for any kind of niche. In the acute care context, it’s a space where there are people that have things we can’t fix, so that’s a part of cardiology acute care. But there’s also a lot of things that we can do. A lot of people who come into the CCU [cardiac care unit] have a good chance of getting out. Sometimes that’s with a transplant or an LVAD [left ventricular assist device]. Sometimes it’s because they get better. Sometimes they don’t, but it’s a nice mix of all of those things.

I felt the other thing is I retained this commitment to research ethics. There are a couple fields within medicine that have a long history of generating evidence and doing big clinical trials. I think oncology and cardiology are probably the two where I felt like there would be a good niche for me in the research ethics space.

BA: For you, bioethics and medicine have always been very intertwined, but were there any particular lessons from the bioethics fellowship that you took into your clinical practice?

ND: Oh, I mean, there’s a way in which it’s hard not to say “everything,” right? Because of the sequence of things, I think [the fellowship] really impacted my approach to medical school and to being a doctor. Everything I do, in terms of thinking about how we approach decisions with patients, communicating with patients—that’s deeply informed by my training in bioethics and that started there [at NIH].

I learned early on, by doing ethics consultations at the Clinical Center, about the importance of listening to people and trying to understand what people are saying. Often the words that come out may be something different from what they are trying to say and what they mean. It was really cool for me to be a part of that early on. I think it really was the groundwork for almost everything in terms of how I approach clinical medicine and interactions with patients and communication especially. That really was foundational, and my continued work in that space is all driven by that.

BA: Getting into some of your more recent research, several of your projects have of course focused on cardiology procedures, with an emphasis on shared decision-making. Can you tell me about your perspectives there?

ND: At a broad level, there are some aspects of research ethics that I think about that are not specifically focused on this, but there’s an overarching theme in what I do, which is, how do we work with people to make important decisions? A lot of the work in payment and recruitment for research has been grounded in exactly that: how you work with people to respect them and figure out how to incorporate their views into decisions.

The work on shared decision-making is the same set of questions in a different context. It’s more clinically focused. I’m particularly interested in instances where preferences or values that people hold can and should make a difference in decisions that they make but incorporating them might be a little challenging. I’ll give you two examples. One is, we got really interested in issues of cost. In the heart failure space, there’s a set of medicines that we have really good evidence showing that they help people to live longer and stay out of the hospital, but at least some of the newer medicines sometimes have significant out-of-pocket costs for patients. We wanted to do some work to try to figure out how to integrate costs into discussions with patients about what medicines they want to take. It’s sort of a recognized but not really a studied problem. It’s not straightforward to think about how to communicate with people about a cost-and-value tradeoff in this context. When you tell people, “Oh, you have a 3% absolute reduction in your chance of dying over the next two years,” some people are like, “Well, that doesn’t sound like much at all. That’s no big deal. Why would I spend all this money?” Other people are like, “Wow, that’s a chance of dying. That’s huge.” Thinking about how to frame that is difficult. It’s also true that doctors don’t know what $80 a month means to most of their patients, and if we don’t talk with them about it, we will never know.

I got really interested in that as a way of saying, “Look, the basic ethical concept is not new or different but how do you operationalize this?” That’s something we got interested in. We’re doing some similar work related to things like defibrillators. That’s a really interesting concept, where seven or eight years after patients have a defibrillator put in — which is designed as a preventive measure — people then have to decide whether they have a procedure to replace the defibrillator. It’s really interesting. Almost everybody does it, but seven or eight years later, a lot of people are in a very different spot. Some of them have new conditions and they might not live that long. Some of them no longer want aggressive care. Some of them have gotten better and the defibrillator doesn’t really add any value. Some of them think the defibrillator saved their lives but it has never shocked them, it has never done anything for them. So, we’re doing some work on this. I think that’s a space where if we could improve communication, we could better align decisions that people make with what they care about. A lot of my interest in these spaces brings together decision psychology and the ethical piece of things. I think often those things work together in important ways, but a lot of folks in ethics are not adequately plugged into how people actually do communicate and how people actually do make decisions. So, this brings together all those things, and we do the same thing in research and in clinical care.

BA: You’ve also extended that interest into the research side, working on the ethics of clinical research in emergency situations. What have been your big takeaways from those projects on situations like heart attacks and strokes?

ND: It’s been really interesting. There’re two kinds of context in which we’ve done a lot of work. One is in the context of what are called “exception from informed consent studies.” Good examples are cardiac arrest or traumatic brain injury: people are unconscious, they can’t be involved in decisions, and decisions about clinical trials have to be made really quickly. There’s a set of rules where you can do clinical trials in those settings, without prospective consent. We’ve done a lot of work to look at the perceptions of people who are included in those kinds of studies. There’s this requirement that you consult communities beforehand, and we’ve been very interested in questions like, what are you learning from this? What are the lessons? In that space, we’ve learned that people care a lot about how they’re treated and that you communicate with them well afterwards. In general, people would prefer to be asked, but they do understand when you explain why, if you’re unconscious, you might not be able to be asked. People understand these things, and we’ve contributed to a lot of understanding about how to operationalize the consultation process. I also think we’ve contributed some important evidence on what’s valuable about consulting people. We’ve been impactful in that space.

We’ve also worked in a slightly different area of conditions like heart attack and stroke: often someone with a heart attack who is having chest pain is not exactly comfortable. They’re stressed out and they’ve got to make a decision [about a clinical trial] very quickly. Or in the case of stroke, that may not be the patient, but their family member has to make decisions quickly. This area may be the one where we’ve had the biggest surprises. This is the patient population I take care of, so it matters a lot to me. I did start that work with the notion that people would be profoundly angry at being asked for consent to be a trial, for example, of one stent versus another while they’re having a heart attack. I thought people would be really angry at being asked, and they would not want us to ask, so I initially thought we should be doing more of these with appropriate involvement of people, but probably without prospective consent. That was my pre-study assessment. I’ve definitely found the reverse: people want to be asked, appreciate being asked, even when they don’t know what they’re signing up for. Not surprisingly, if they sign up for a clinical trial in the context of actively having a heart attack and they’ve got to make a decision on the way to the cath lab [cardiac catheterization laboratory], people don’t know a lot about what they’ve signed up for. But they don’t resent being asked. They would rather be asked because they want the opportunity to say no, even if they don’t really understand what they’re saying no to. They also want us to come back and tell them what they’ve signed up for so they can understand it better later on.

That’s been one area where I think it’s a little challenging to figure out how to meet regulatory requirements with this. We’ve worked with a lot of patients to try to build procedures for consent that meet their expectations in the moment. That’s been really productive and valuable and impactful in helping to understand what conversations can and should look like in those moments. One of the surprises to me was people’s lack of anger about being asked about something that they don’t understand very well in the moment. I think it really is humbling, and a good example of why you’ve got to talk to people to learn what matters to them. This is people who have been in studies — this is not hypothetical decisions. If you generally ask people, “Would you want to know X?”, they’ll usually say yes. But these are people’s experiences of having gone through the process. I think it’s meaningful, and I think we should respect that.

So, in the acute space, one sort of abiding lesson that I’ve learned is that we should try to tell people what we can, and when we have opportunities for giving them the opportunity to say no, we should do that. The challenge is I think they also want direct, simple, and short explanations. That makes it difficult to meet regulatory requirements. I think it’s really important for IRBs and others to think about. This is a space where, in many cases, less is more — not overwhelming people with information is a way to better engage them in a decision. So one of the fights that we sometimes have is — whether it’s with IRBs or with investigators or with sponsors — we say look, patients are telling us they want less information because they’ve got to make a decision really quickly and you need to get to the point, just like if you’re giving an elevator pitch to someone. We need to design how we communicate with them around the real context in which people are making that decision. That’s one of the things that needs attention.

BA: Definitely. You mentioned earlier that there’s been a shift towards more empirical research in bioethics. Can you talk about that and how it’s influenced your work?

ND: I don’t have counts, but in 1997, when I first started doing work in bioethics, when I showed up at NIH, if you had counted the number of empirical papers studying trials of interventions or anything like that to try to address ethics issues, they would be very, very few. A lot of ethics practices were not grounded in any data about the real world in which these issues were operating. I think, to their credit, Zeke and Christine and others in the department, Marion as well, were at the forefront of using empirical research methods to start to answer that. There were others doing this too, I should say. They weren’t the only ones. The folks at Hopkins that I worked with — Nancy Kass, Ruth Faden, Jeremy Sugarman, and Holly Taylor especially — were really pushing this idea that we should study these situations and use real research methods to answer questions and get the facts that we can find.
I think that’s just continued to grow. There are certainly more and more people doing work in that space, and a lot of our approaches to important issues have been shaped by that. If you look at the payment space, I still have to give talks where we say look, the evidence doesn’t support the concerns that people have about paying research participants. But now I have that evidence. The truth is, in 1997, we didn’t have any of that evidence. There have been studies now that have been done where most of the evidence points towards the idea that money probably makes people pay more attention to things rather than dismiss things. That’s a very commonsensical notion, right? If somebody offers to pay me to do something, I’m probably going to look more carefully than if they don’t offer to pay me something. But having some data that back that up has really changed some people’s approaches. I don’t think enough people are aware of those data. Similarly, some of the concerns about undue inducement and people’s either lack of understanding or signing up for things that they really have strong concerns about — that hasn’t really been borne out. I think that’s just an example of where slowly accumulating evidence has moved practices.

There’s abundant data in the informed consent space that suggests that a lot of common practices probably aren’t helpful, whether it’s long consent forms or other kinds of things. And also I think evidence that intervening on consent forms is probably just the tip of the iceberg. Most people are not making research decisions based on a consent form. It’s all the interactions that happen beforehand. So, I think that’s another situation where empirical data has shaped both potential ways that consent forms and documents could be better, but also some humility in terms of the ability to make this situation better with changes to forms alone. All of these are areas where we have so much more to draw from now than we used to. And I think funders have recognized that this is a space that we can make progress on.

BA: Great. Thinking about some more big picture questions now, what do you see as some of the greatest challenges and opportunities confronting bioethics in the next five to ten years?

ND: Obviously everything we do is colored by our own world and what we experience. I don’t think there are isolated ethics challenges — I think that’s important to consider. Most of the ethics challenges are happening in the context of other things that are happening in the world of healthcare. The notion of integrating clinical studies into healthcare systems, the kind of “learning health system movement” that’s been written about and talked about for a long time — I really do think there are some important issues about how we scale that up and how we generate knowledge faster. There’s a culture shift that’s been going on for some time about research generally and how it integrates into healthcare. That’s an important challenge to get on top of. If you go back 20 years, research was definitely viewed as kind of an optional thing. I think we now recognize it’s not optional. It’s how we make care better and figuring out the ethical contours of that still has still important questions. A lot of the foundational conceptual issues have been outlined, but I think how to operationalize this is still really important, and how to communicate that with patients and the public in a context of shifting views of confidence in medical research, I think is really interesting.

The obvious topic is AI [artificial intelligence], right? One of my greatest frustrations is that the notion of AI ethics is not one field. Just as an example, there’s one set of issues about AI itself, and a whole different set of issues about how to appropriately implement and use AI technologies in the context of medicine and research. Those aren’t the same sets of issues, so I do get frustrated quickly when people just sort of quickly talk about AI as if it was a monolithic concept. I’m particularly interested in the notion of how we integrate various AI tools into the healthcare infrastructure. I think this is a sort of a large-scale ethics issue. Some of the questions are more immediately ethics questions. Others are more just sort of big picture, but I see this willingness to rapidly deploy various technologies that don’t have a lot of evidence. I think it’s a really important ethics issue that we responsibly figure out how to test various approaches and implement them when their impacts are good and don’t implement them when their impacts are bad.

We’re doing a lot of work like this, where the fundamental ethics issue is really that we need to do this work to determine impact more than that we’re answering a deep ethics question. But I think this is really a big-picture issue and not isolated to AI. It’s really important that health systems adopt that kind of approach. One of the challenges, I think, is that the technologies evolve so fast that when you think about doing a trial, for example, implementing an algorithm that detects imaging data, or we do some things related to AI and EKGs [electrocardiograms], you can do the trial and then the algorithm might be really different in a year. One interesting question is how you adopt interventions and technologies themselves that aren’t the same when you start studying them as they are later. I think that’s a really interesting issue.

There are also enormous issues in terms of proper integration of AI into clinical relationships. It’s really easy for doctors to say, look, we’re really essential because of these various human connections. A lot of them don’t recognize that there are ways in which they probably mess it up. In figuring out how we do that better, we have an enormous ethical responsibility to embrace and use things that are improvements and also to figure out when they’re not. And that’s really complicated.

BA: What advice do you have for aspiring bioethicists early in their education or career?

ND: Probably most important is to find opportunities to work with people who are doing important work and to find a training environment that’s going to help you grow. To me, the really wonderful thing about my time at NIH was that I did not come with a question, right? I was interested, I was a total sponge, but I probably would have no shot at being a pre-doc fellow now because I didn’t know what the heck I was signing up for. That said, I was eager and, like we talked about earlier, I didn’t come up with the idea that we were going to study payment for research. That was Christine and Zeke, and the amazing thing was I got to work with them on that. They gave me responsibility for doing a lot of the work. So, if you can find environments where you’re working within a program that is successful and also have the opportunity to grow as a scholar, that’s what you need to do. Sometimes I have trainees who come in dead-set on working on one particular thing and answering one particular question, but often as a trainee, you’re not in a spot where you can execute that really well. That’s sort of for the next step. The most important thing is to put yourself in a good, mentored training environment where you can work with people to answer questions. They may not, at the very beginning, be the questions you’re most passionate about, but you’re going to learn the process and grow and learn how to answer questions better, and you learn the ways to do that. Finding really good, mentored training environments with people who care about you and people who are going to work with you on projects — that’s really important.

BA: Is there anything else you’d like to add or anything you wish I’d asked you?

ND: You didn’t ask about the impact of specific people and whatnot in my path, and I just think it’s worth saying that I’ve been really lucky. I don’t take that for granted. I’ve been lucky at each stage to have really, really wonderful mentors. People like Christine and Zeke were extraordinary mentors to me and unusual mentors to me in the sense that they really cared about me, prioritized my career, and helped me to grow. They were always available, and that’s an example of mentorship that I’ll never forget, and I try to pass on as I mentor other people. Other faculty like Dave and Marion were there from the get-go as well and have continued to be mentors for me. In my PhD program as well, Nancy and Ruth and Jeremy at Hopkins have continued to be mentors to me. Everyone I’ve mentioned were people who, when I started as a fellow at Emory and as a junior faculty member, I leaned heavily on all of them to help me to grow my own research program. I wouldn’t have been able to stand up something new within my space here without that foundation. It’s not just the skills I had learned, but they continued to support me and help me to answer questions. All of them are people that I’ve been involved in projects with but also called for advice. If you can find opportunities to work with people like that, who will go to bat for you and help you over the course of your career, I think it puts you in a much better position for success. We don’t do these things alone. More than anything else, I’m really privileged and lucky to have had my career start in that way because it certainly could be very different. I don’t take that for granted at all.

BA: That’s a wonderful note to end on and really shows the influence of the 30 years of the department in the nearly 30 years of your career. Thank you so much for taking the time to speak with me.

ND: Yeah, my pleasure. Thank you so much. It’s really exciting that you’re doing this work.

BA: Thanks.