Danis, Marion (2025)

BA: Good morning. Today is March 20, 2025. 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 Marion Danis. Dr. Danis is a physician and bioethicist who was a member of the Department of Bioethics at the NIH Clinical Center for 26 years. She is now a Special Volunteer and Senior Research Physician Emerita. Her research has focused on patient treatment preferences, on finding strategies for fair resource allocation through public deliberation, on promoting strategies to reduce health disparities, and on ways to improve ethics consultation. Thank you for taking the time to talk with me today, Dr. Danis.

MD: Yes, I’m happy to do it.

BA: I wanted to start off by talking about your education. You earned your M.D. in 1975 from the University of Chicago. Can you tell me about what motivated you to study medicine?

MD: That’s a good question. I actually was an art major in high school and had a very strong interest in art because of my family’s artistic interest and ability and had actually some neighbors who were artists, too. When I got to college, though, I was an undergraduate at the University of Chicago and had a very, very influential biology teacher [Lorna Straus, Ph.D.], and I really loved biology. One of my neighbors who was a very capable but financially unsuccessful painter always said that female artists have a hard time convincing people of the value of their work to others. And I felt like I was interested in biology, and practicing something like medicine and helping other people was something that didn’t require a lot of persuasion. People can easily appreciate its value to them. I became very interested in doing medicine during college.

BA: When you started medical school in the 1970s, just over 20% of medical school enrollees were women, so did that affect your education or your early career opportunities?

MD: We did have even less than 20% females in my class, but I felt like people by and large were very open-minded about women. There were occasional experiences during my early clinical rotations where a surgical resident would make an off-color comment, or a patient would assume I was a nurse. But, by and large, it was very evenhanded experience for the female and male students. I will say, when I got to my house staff training, when I was working in the hospital, the hospital had been unfamiliar with having female trainees. It took them a very long time to develop separate sleeping quarters.

BA: Was that during your time in North Carolina?

MD: Yes.

BA: After medical school, you interned and completed a residency in internal medicine in Chapel Hill, North Carolina, and you also completed a National Institute of Environmental Health Sciences research fellowship in toxicology, and a fellowship in critical care medicine. How did you choose those specialties, and what was your experience like during that time in North Carolina?

MD: I very much wanted to have a lot of direct patient care and what we call continuity of care, where you get to know your patients well over a long period of time. I was very inclined to practice internal medicine and primary care internal medicine.

What happened was, when I finished my internal medicine residency, I was offered the opportunity to be an instructor [in the Division of General Medicine at UNC in Chapel Hill], and I wanted to do some kind of research. It doesn’t make a lot of sense to be in academics without having some kind of research focus—that’s one of the very valuable aspects of being in academic medicine. My first thought was that I wanted to do clinical pharmacology. Clinical pharmacology is a very interesting area of expertise where clinicians study the interaction of medications in the human body. They look at how the drug is metabolized and how it works. And I was particularly interested in how chronic diseases affect the metabolism of drugs.

I spent two years in the laboratory, and when I was done with that, I realized that I was spending most of my time interacting with lab animals, and that didn’t really capture my fancy. I really missed spending my days interacting with patients and explored with my division chiefs, [Drs.] Suzanne and Bob Fletcher, at the University of North Carolina, and my department chair [Dr. David Ontjes] what other options I might have. They offered me the opportunity to be the medical director for the medical intensive care unit.

In those days, people in various disciplines were working in critical care because there were not yet boards in critical care medicine. So, I became the director of the medical intensive care unit and decided to shift my research focus to studying the preferences of critically ill patients about the kind of care they would get.

I began practicing critical care just by happenstance, but it was a very, very fortunate turn of events, because it really turned out to be a wonderfully rich area of research, doing a lot of survey research on what patient’s wishes are and how clinicians ought to accommodate them. 

BA: It sounds like you were kind of balancing research with some clinical care while also doing some teaching. What were some of the specific rewards and challenges of all of those endeavors?

MD: I love taking care of patients. I think the challenges and the rewards were, from my perspective, very much based on the rich experience of interacting with each patient. If you’re treating people who have diabetes and high blood pressure and heart disease, when you’ve done it for a while, it becomes a little bit repetitive. But every patient is a unique person who brings their life history to the table, and so the pleasures were about getting to know patients.

In the ICU [Intensive Care Unit] in particular, because patients are often not able to speak up for themselves, you’re really interacting a lot with their families, and so the challenges were very often issues about whether to use life sustaining treatments or whether to set limits on life sustaining treatments. It actually dictated the type of survey research we did. We did a systematic survey of patients and families about their inclinations to use or forgo life sustaining treatments depending upon how long their life was expected to be prolonged. I think that was one of my favorite parts of it.

BA: It sounds like ethical questions were already a regular part of your life in both your research and the care you were providing. But I wanted to ask about how critical care medicine started to professionalize during that time when you were leading it. You said there weren’t boards yet, but did you see a shift in the time you were there?

MD: Yes, definitely. During the time I was there, the American Board of Internal Medicine developed subspecialty boards in critical care. Trainees who wanted to go into critical care medicine were offered, for the first time, formal critical care fellowships. There were board exams developed in critical care medicine, and I interacted a lot with the Society of Critical Care Medicine. As a result of some of the survey research we did at UNC, I was invited to participate in the Ethics Committee of the Society of Critical Care Medicine, and for a number of years chaired their Ethics Committee.

It was a very intense experience because we wrote a number of position papers on the criteria for using or foregoing life sustaining treatments and deciding when these kinds of treatments were or were not appropriate.

BA: Great, so you were very invested in ethics work already. What brought you to the NIH Department of Bioethics in 1997?

MD: Well, as a result of my being involved in these kinds of issues at the University of North Carolina, I was asked to set up the University of North Carolina Hospitals and Clinics Ethics Committee and their Ethics Consultation Service. So, I was really quite familiar with how to conduct clinical ethics consultation, and the new Chief of the Clinical Bioethics Department at the NIH Clinical Center invited me. That was Ezekiel Emanuel. As he was forming the new department, he invited me to come and run the ethics consultation service, which was a wonderful offer, to have an opportunity to be at a place like the NIH.

BA: Definitely. I know Zeke Emanuel was the new chief, but who else was in the department then, and what were the culture and the activities like?

MD: It was a very small department to begin with. Christine Grady was there, so we were the faculty at that point. And there were a couple of fellows—Dave Wendler was one of the first fellows. We had a very small space and very few people, and the department really took off from there. It grew to have, today, about a dozen faculty and a half a dozen fellows each year, with a number of the faculty having joint appointments with NIH institutes.

BA: Did you find that the Clinical Center was pretty receptive to the consult service?

MD: Yes, although it took some time for people to become familiar with making regular use of the service, and it also took a little bit of time for people to feel comfortable with it. People didn’t necessarily automatically appreciate the difference between the IRB, the Institutional Review Boards, that they were having to interact with to get their studies approved, and the ethics consultation service, which is not at all a regulatory kind of capacity.

The ethics consult service was already in existence before I got to the NIH. I simply took over running it. One of the important aspects of my job was helping people to appreciate that the ethics consultation service was—and is—meant to allow people a space to jointly deliberate about what are ethically appropriate actions to take in a given situation where there’s a lot of uncertainty about how to proceed: whether a study design is ethically sound or not; whether a particular individual ought to be enrolled in a study or not; whether limits of privacy can be overridden for some other important reasons. Those of us on the ethics consult service were there to help investigators and participants in research think about the ethical choices rather than dictating what the right choice was.

BA: The Clinical Center is a unique hospital in a lot of ways, so what were some of the challenges or new skills you had to learn in helping establish the consult service here versus at UNC?

MS: The consult service at UNC, like consult services at clinical hospitals around the country, was doing consultations about ethical choices in health care delivery. The NIH Clinical Center is a hospital that only enrolls research participants, so the consult service at the NIH Clinical Center is one of only two places in the country that has a combined focus on research ethics and clinical ethics questions. I had to become a lot more familiar with research regulations and principles of ethical research than I had been before I arrived.

BA: As you were serving as Chief of the Bioethics Consultation Service and becoming more familiar with research ethics, what kinds of trainings did you offer to the other faculty in the department or to fellows to help set up the service and make the rest of the NIH more familiar with it?

MD: I think I wouldn’t put it in the first person. The faculty in the department did a lot of work teaching research ethics, and I was not taking the lead, in general, in teaching research ethics. Christine Grady and Dave Wendler and others—basically all the faculty—played a very important role in teaching research ethics to investigators and trainees at the NIH, and also elsewhere, far beyond the walls of the intramural NIH program.

My role was really focused on training our fellows each year in the practice of ethics consultation in general. You know, how do you go ahead from once you get a question from someone or a request for help, how do you handle it? There are many details involved that actually make consultation an inviting and effective process: figuring out how to set up meetings; how to run the meetings; how to be inclusive of relevant stakeholders; how to document the consult process; how to write up that process and report it either in the electronic record of the research participant, if there is a research participant at issue, or to write up a report for an investigator who’s designing a study. My focus was really on teaching them the methods of doing consultation, be it research ethics questions or clinical questions. 

BA: I can say it’s a very effective training process. Even six months into the fellowship, I’ve learned so much. One of your other roles in the department was head of the Section on Ethics and Health Policy, so what kind of work did you do for that role?

MD: That’s an interesting question, Brittany. I thought about it—I knew you were going to be asking me about that. There were several faculty in our section, and I really think that, in the department, we let faculty set the agenda for their work. There wasn’t a very top-down leadership kind of role. I focused largely on my own research and collaborating with others, and on training fellows to work with me.

I think one of the most vital aspects of the work I did was to do a number of surveys, that a number of fellows were involved with, that involved studying a whole number of groups in terms of their use of ethics consultation. We surveyed doctors about their use of ethics consultation. These are doctors in clinical practice, and investigators doing research. We asked them about the kind of questions that they were concerned about from an ethical standpoint, what sort of things triggered their asking for a consult, what were the sort of things that were barriers to their asking for consults.

We’ve done a number of surveys. Some of the most interesting ones were surveys of patients and families about the ethical concerns that they had experienced in the course of being sick or getting medical care. We’ve also done multi-national surveys to look at the different experiences with ethics consultation that clinicians have had in different countries. We also looked at the interaction of their own clinical experience with the health care systems they live with, because countries around the world have different kinds of health care delivery systems. We were very interested in how those systems impact the practices of doctors. I will say that the capacity to do important survey research was one of the really strong points of working in the Section on Ethics and Health Policy and in the Department in general.

BA: That sounds like a really important way to not only understand ethics consultation domestically, but also how it might be better implemented around the world, given different contexts. What are some of the major changes you’ve noticed in the department over the last nearly 30 years since you started here?

MD: I think the biggest change was the growth. It started as a very small department, and over time there have been several changes. One is that we started to have more fellows than we did originally. The prior disciplinary training of the fellows broadened. We [originally] had perhaps more medically trained people. We’ve shifted from that, to having people who have training in the law, in philosophy, in social sciences, and public health. We’ve also gotten more faculty and the breadth of their training has changed, because we’ve gotten people who are, again, social scientists, or people who are trained in genetics, law.

We’ve had a number of very interesting visiting scholars over the years, and they’ve been a real asset to the department because each year we get a new perspective at the table from the visiting scholars. I think the other thing that’s changed over time is the affiliation with more institutes and getting their financial support for the salaries of some of those faculty.

BA: What do you think are some of the benefits of having a more expansive disciplinary background in the department?

MD: Well, different disciplines bring different perspectives. If you’ve got a lawyer on the faculty, they help you think about the overlap but also the differences between a legal analysis and an ethical analysis. Something can be ethically warranted but not allowed by regulation, or vice versa. If you have people who are social scientists at the table, they help you think about some of the practical aspects, like the social context in which an ethical question is embedded. What is appropriate or what’s the right range of solving an ethical quandary from a philosophical perspective may not be exactly the right or the most feasible set of options when you’re thinking about the social context, so having social scientists involved is good.

Also, I think that often people who are thinking about ethical questions from a very theoretical perspective often don’t happen to know the nitty gritty science in which the ethical question arises. You might have a question come to your attention about whether to stop a life-sustaining treatment. Well, it’s important to know what’s medically feasible to do. A philosopher needs to talk with a clinician who knows the medical dimensions of the decision in order to help think through the question in a very realistic way. Having people from different disciplines at the table is very important.

I haven’t mentioned nursing. For example, our department chair, Christine Grady, brings a nursing perspective to the table, along with her degree in philosophy. If you don’t have the perspective of bedside nurses in mind when you’re talking about making decisions for patients, you’re missing a really important perspective. That’s just an example.

BA: It sounds like those changes have really helped the department to flourish and do some deeper interdisciplinary analysis, but what has remained the same in the department throughout your 30 years?

MD: I would say the combination of encouraging critical thinking, and collaboration, and respect for each other, even when you don’t agree.

BA: That’s definitely still true. I want to turn to thinking about some of the research you produced. Some of that research has focused on public deliberation about health policies and fair allocation of resources. Can you talk about that research and what you’ve made as your contributions to the field?

MD: Sure. I would start by mentioning the motivation for doing this kind of research. Way back when I was surveying patients who had come out of the intensive care unit, we asked them about their willingness to go back into intensive care if they could do it over again. We were really surprised that the vast majority of patients and families of patients who had died said that they would be willing to go back into intensive care if they had to do it over again, even if it would prolong life for one month. As a clinician who’s very interested in patient-centered care and in designing health care that accommodates patients’ wishes, I was very concerned that the desire for very intensive treatment for very marginal gains is not a desire that is really easily accommodated if you want to have a health care system that’s financially sustainable.

When I got to the NIH, I became interested in figuring out a way to engage the public in thinking about the use of health care resources in a way that accommodates their wishes but acknowledges resource constraints. You know, we in the United States have a lot. We’re in many ways a very wealthy country, but we don’t have infinite resources. So, if we want to design a health care system that accommodates our needs, but remains sustainable, we have to prioritize. The motivation for public engagement in thinking about these sort of choices is that the public has the most at stake. I mean, it’s their health, it’s their money. We wanted to be able to make it possible for the public to think about these issues in an informed way, not just to think about it, you know, I ask you a question, give me your quick answer. We wanted to give people enough information to make thoughtful choices about prioritization.

I began, when I first got to the NIH, to work with a colleague at the University of Michigan, Susan Goold, because she was interested in very similar sorts of questions. We worked on designing a decision tool that would make it easy for people to understand these very complex tradeoffs. If you can’t have everything, what are you willing to give up because there’s something you want more? We designed a very simple game—what’s called a serious game—that makes it visually very obvious. We have a game board, a pie with slices on it, and various choices the participants have to make by selecting with markers what they would like if they could choose what their health insurance coverage would cover. The tool we designed is called CHAT, Choosing Healthplans All Together. Over time, we changed the name to CHoosing All Together.

After designing that tool, we spent the next several decades surveying people to address a number of priority-setting questions: What would Medicaid enrollees want if they were disabled and couldn’t have absolutely everything but wanted to prioritize? What would Medicare elderly individuals pick for their Medicare insurance package to cover? What would cancer patients pick for coverage of cancer care towards the end of their lives? What would people with private insurance sponsored by their employers pick?

We also worked with state insurance commissioners through collaboration with Marge Ginsburg [at the Center for Healthcare Decisions] in California. We worked with commissioners in a number of states around the U.S. to engage members of the public about what they would want their state health insurance plans to cover.

Gradually, we also shifted to thinking about a broader palette, so to speak. As social scientists and public health experts have recognized over time, health care is not the only crucial factor. It’s necessary, but not totally sufficient to guarantee health, so we wanted to allow the public to prioritize a broad array of services that cover the social determinants of health: help for housing costs and education, early childhood education, adult education, nutritional help for people who are financially stressed and don’t have enough money for food. So, we basically used the CHAT exercise to allow low-income folks to prioritize services that address the social determinants of health.

This project, or large agenda, spanned several decades, and the tool has developed further. Initially we developed a game board that one uses on the table. We subsequently developed a computer-based version and then a web-based version. During COVID, we developed a version that made it possible to do these kind of group decisions virtually. Over the last couple of years since the COVID pandemic, we’ve actually done CHAT exercises with virtual groups, which has been a very exciting opportunity.

BA: That’s amazing. When you and Dr. Goold were first designing this exercise, did you even imagine the broad impact it would have?

MD: I don’t think so. I have to say, Brittany, I actually wish it had more uptake than it does because I think people hesitate to accept the need to prioritize, and I think that’s a shame. I think that it would be wonderful if we could be more candid about the limitations we have to face, the financial limitations we have to face, and accept the possibility that, given its inevitability, it would be good to have the public participate in those decisions.

Public engagement is useful for a number of reasons. It allows people to understand the problem and be more tolerant of the problem. It allows people to have a voice in the choices that are made in public policy. It allows people to be more accepting of the choices that get made by public policy makers, even if the choice isn’t exactly the one that any particular private individual would pick for themselves. When they participate in a process like this, they adjust and accept public choices with more insight. It’s something that I think is very useful and could be more useful if there were more uptake.

BA: Yeah, maybe it’s on the horizon. It sounds like it’s already grown so much. Another project you worked on was a book called Research Ethics Consultation: A Casebook with several other members of the NIH Department of Bioethics [Emily Largent, Christine Grady, Dave Wendler, Sara Chandros Hull, Seema Shah, Joe Millum, and Ben Berkman]. What was the inspiration for that project, and how did that collaboration work?

MD: That’s a good question. When you look back at the last three-quarters of a century, clinical ethics consultation has been practiced in hospitals all over the country. Research ethics consultation is only fairly recently widely practiced. One of the reasons it’s more widely practiced more recently is that the NIH required universities that were getting clinical research funding to have some kind of ethics support services, so there are about 60 university hospitals around the country that now have research ethics consultation services available. But before that, there really weren’t many places that did. The Clinical Center was rather unique in having such a service, so we thought it would be very useful to put together a book that would explain the process of research ethics consultation and give examples of some of the more common types of questions that we get. We developed for the book a taxonomy of the types of ethics consultation questions that arise in the research context, and that was really the structure of the book. The motivation, as I said, was to make our experience at the Clinical Center available and useful to others who were beginning to do research ethics consultation around the country.

BA: That sounds really useful based on the experience of one of the top research institutions in the world. From 2011 to 2012, you contributed to the Department of Health and Human Services Assistant Secretary for Preparedness and Response Working Group: Guidance on Allocating Scarce Federal Resources in Disaster Situations. What did you do in that role, and did that working group influence COVID-19 pandemic policies?

MD: I was involved with the Assistant Secretary for Preparedness and Response with a working group that was thinking about how the government should plan for future pandemics. And we did some work thinking about what to do if you had a pandemic that affected several states, and you didn’t have enough resources to meet all the needs of the populations living in those states. We wrote some papers thinking about that. The extent to which that work influenced subsequent administrations—you know, when one administration turns over to the next, there’s often obviously some shift in approaches. I don’t know that I could say there was a huge uptake.

BA: Yeah, but it’s great to have the resources there for the inevitable next pandemic although we hope it’s very far away.

MD: Right.

BA: Now that you’ve stepped back from your full-time role in the Department of Bioethics, can you describe what you’re working on? 

MD: I’ve been working on the CHAT project, the last one that I mentioned when I was talking about it. We’re finishing up the project that involved the virtual convening groups to talk about what services people would want after the COVID pandemic.

And I’ve been working on a number of book chapters. One was a chapter arguing that ethics consultants should be more familiar with what’s known by psychologists about how people react to change. Ethics consultations are often precipitated by some kind of troubling change. A patient becomes sick, or a patient becomes aware that their life is ending, or an organization realizes that there’s been some kind of new crisis. These are circumstances that involve the need for people to adjust to change. My co-author [Hollen Reischer, Ph.D.] and I wrote a book chapter on the value that ethics consultants might gain from understanding evidence in the psychology literature about how hard it is for people to adjust to change. One of the most useful ways to overcome that challenge is for people to accept that change has to happen.

BA: Looking ahead now, what do you see as some of the greatest challenges and opportunities confronting bioethics in the next 5 to 10 years, or even further out?

MD: Well, there’s the challenges that come with new technological developments. We know that artificial intelligence is going to be an almost insurmountable challenge for human beings to adjust to. I think that ethics consultants can make a valuable contribution to that. I think that we are seeing, all the time, new medical technologies that offer the opportunity for gene modification and perhaps lengthening life. All these challenges are ones that ethics consultants can help people think about.

I think that we are also facing a very substantial change in the environment we live in, in terms of the attitudes that we all have about the practice of democracy. I think that ethics consultants will have a valuable role to play in thinking about how we deal with the fact that we have a very polarized country. Ethics consultants are very good at helping people to have dialogue even when they are strongly disagreeing. I think there are a number of ways in which ethics consultants can play a very useful role in the coming years.

BA: Reflecting on those upcoming challenges and also all of your experience, what advice do you have for aspiring bioethicists early in their education or careers?

MD: I would say it’s useful to pursue a broad education, to learn how to do careful, critical thinking and careful analysis, because ethics consultation requires very careful analysis of questions. Critical thinking doesn’t come automatically. I think I would encourage people who want to be involved in ethics consultation, as a very practical matter, to not just get training in ethics consultation, because it turns out that there are not a huge number of jobs. Having training in some other discipline like law or medicine, psychology, nursing, makes career choices more feasible. I think those two generally are the suggestions I have.

BA: Great. Also reflecting on your time in the Department of Bioethics, do you have any particular memories or funny anecdotes that stand out that you’d want preserved for history?

MD: Well, I have to say that the most fun experiences are teatime every day [laughs].

BA: Definitely. And then one other question: have you gone back to that earlier interest in art or involvement in art communities that you had in high school throughout your career?

MD: That’s a good question. My younger daughter [Rachel] who studied art history in college, has gotten me a beautiful set of pastels, and she’s been trying to get me to get back to it. But I still have yet to do it. I’ve been very busy with other things.

BA: You’ve definitely had lots going on. Is there anything else you’d like to add, or any questions you wish I’d asked you?

MD: No. I think you’ve done a great job, Brittany, covering a lot of territory.

BA: Well, thank you so much for taking the time to speak with me, Dr. Danis. I really enjoyed the conversation.

MD: I enjoyed it, too. Thank you.