TRANSCRIPT: Communicating Ethical Challenges in Crises
Novmber 15, 2022
Transcription by machine — may contain errors
Elizabeth Lanphier So thank you all for being here today. It’s my pleasure to welcome you to this inaugural session of the Bioethics with Bigger Impact Virtual Talk series, which we’re going to get started with in just a minute. I’m Elizabeth Lanphier. I’m a coeditor, along with Larry Churchill of a special symposium in the forthcoming autumn issue of Perspectives in Biology and Medicine on Translational Bioethics. And this talk series with which we’re really fortunate to partner with the Hastings Center and a variety of other bioethics institutions in a series that puts together authors in the symposium, along with moderators with expertise in related topics. And our session today is on communicating ethical challenges and crises and the links to the essays. And the issue will be circulated after this event, along with information about how to access the recording. And I will now introduce our moderator, Professor Keisha Ray, who received her Ph.D. in philosophy from the University of Utah. She’s currently an assistant professor of bioethics with the McGovern Center for Humanities and Ethics at UT Health Houston, where she also serves as the director of the Medical Humanities Scholarly Concentration. Most of Dr. Rey’s work focuses on the sociopolitical determinants of black people’s health, integrating social justice, education into medical school curriculum and the ethics of biomedical enhancement. She has published in all the top bioethics journals, as well as in edited volumes and textbooks. And her forthcoming monograph Black Health is contracted with Oxford University Press and is expected to be published in May of 2023. I now turn the floor over to Dr. Keisha Ray.
Keisha Ray Thank you. Appreciate it. So I am here and I’m going to introduce Dr. Tia Powell and Dr. Travis Reider. But first, I want to remind everyone that your cameras are off and you cannot meet yourselves. But please put all of your questions in the Q&A. And we will have about 20 minutes, maybe a little bit longer for questions at the end. So please put your questions in there and I will make sure that we get to them and have a very fruitful conversation. So first, I am going to introduce Dr. Tia Powell. She is the director of the MONTEFIORE Einstein Center for Bioethics and of the Einstein and Cardoza Master of Science and Bioethics Program. She holds the Trachtenberg Chair in Bioethics and is Professor of Epidemiology, Division of Bioethics and Psychiatry. And she focuses on bioethics issues related to public policy, dementia, consultation, end of life care, LGBT people and public health disasters. She served four years as the executive director of the New York State Task Force on Life and the Law, which functions as New York State’s Bioethics Commission. She has worked with the National Academy of Medicine on many projects related to public health and ethics, and chaired the Decadal Survey on Behavioral and Social Science Research on Alzheimer’s Disease completed in 2021. I will now turn it over to Dr. Powell.
Tia Powell Very much. Dr. Ray, it’s a pleasure to be here today. I will note, as I did earlier to my colleagues, I’m on a very busy street and you may hear some evidence of that as a comment. So let me jump in without further ado. I’m going to confess to you, I did not set out to do public health bioethics in some sense, fell into my lap serendipitously, but it nonetheless has formed a central strand of my career as a bioethicist. And I’m eager to talk about it today because I’m really hoping that more young bioethicists with bioethicists of any age. But I hope that more will consider joining in in this work because there’s a lot to do. It was my experience in public health that started shortly after I became the executive director of the New York State Task Force on this. And around that time was about 2006, there was the ominous emergence of an H5N1 avian flu. Birds started to die and then in more countries and then human children and young adults. And indeed of that particular avian flu, I believe about half of the state’s relatives ever were in people less than 20 years. So different target population than we’ve seen elsewhere. But then this flu spread, it started in Asia and it should have in Europe and in Africa. And this created a kind of global anxiety in public health officials all around the world. In New York City, people began doing tabletop planning exercises to figure out what would we do if this came to us. And their work revealed that quite quickly we would run out of ventilators long before you had a pandemic commensurate with something like that of 1918. So the Task Force on Life in Law was asked to address what do we do about a shortage of ventilators in a potential pandemic? I was able to assemble a team with varied expertise. The task force itself didn’t really have that much public health expertise that we were able to bring in national experts from all around. And we produce about a year or two later, which I believe was the first US report at a state level, not an academic publication that looked at ventilator triage in a pandemic. We hoped, of course, that it would never be needed. I went on to work on disaster related projects for the National Academy of Medicine and CDC. One related to anthrax was particularly disturbing. I worked on projects for New York City in New York State. I did critical care, medicine, and some other state level projects in Maryland and Massachusetts. These were all terrifying and gratifying. They all had similarities. There were real ethical tensions in trying to figure out what to do. For one thing, a public health disaster is paradoxical in that there’s no notice. It comes out of the blue. But also, it’s entirely predictable. If you live in San Francisco, it’s completely unacceptable for you to say earthquakes. We never thought of that. We didn’t make any plans for that. Similarly, in New Orleans or Florida, there’s a hurricane season. You know, it’s coming. You don’t know the day or the size, but you have to plan for it. And at the same time, there’s real ethics tension. You make guidelines and you know you must do it and you know that you will in part at least be long. The specifics will unfold in a way you can’t predict and you can’t cover all eventualities. So it is a nightmare of planning. And yet it must be done. I’ll say, too, that the extension is not a disaster. It is defined by a shortfall to resources versus needs, is defined by excess mortality. You were trying to keep that from being no worse than it must be. But that’s really what’s coming to you. And the question is, can you hold it within some reasonable said about these terrible entities, public health disasters? This is excess mortality. This is terrible things economies, families, people being torn up in horrifying ways. It’s hard to work on them. And that’s why we need more people to do it, because people get burned out and they don’t want to do it forever. All right. So so all of this was going on for many, many years. And all of those projects for all of these different groups, people always said, oh, we hope we’ll never need this. And we didn’t until we did. So what then happened with that ventilator guidance document that New York had had the foresight to put together in 2007? What happened to that in 2000, 1920? Not much. I’m very sorry to say. I myself is long gone and the task force is essentially dead. It had not had any staff or meetings for some time before the pandemic emerged. Governor Andrew Cuomo, despite repeated requests from doctors and facilities for guidance, ignored those ventilator guidelines and ignored even parts of them that didn’t have to do with ventilators. Could you set up a commission to look at some shortfalls in how you allocate things you wanted nothing to do with them? And instead, the governor in New York did something very interesting. He tried to provide a ventilator for everybody who needed one. In a sense, that sounds like a great idea. What it meant was a massive increase in ICU beds and beds generally, but without our ability to increase the number of trained clinicians. And this is part of what the guidelines were trying to work on. You can’t create new ICU doctors or respiratory therapists. So who’s running these ventilators? Who’s taking care of people on these incredibly sophisticated machines? How do we do that? So part of what happened in the real world is that there were enormous ethical tensions where you cannot simply cannot provide the same level of care in a disaster if you do. There were enormous psychological burdens on health care workers, and New York ended up with one of the higher per capita death rates in the U.S.. So as somebody who’s spent a lot of time thinking about political pandemics, the question for me is. Maybe I’ve said from the beginning I’ve been less attached to them. When we looked at the mortality rate of COVID, of COVID patients in New York City in the first wave who were over 80 and got that sense, the death rate was well over 90%. The ventilator didn’t save their lives. What they needed was to not get COVID. They needed protection. They needed prevention. But that opens up the incredible can of worms. In the beginning of the pandemic. Protective equipment was going to the highest bidder. It was a global, horrifying kind of scramble to get the protective equipment. And nursing homes are always going to be the lowest bidder in the US, and particularly in good times on the brink of financial disaster. They were completely shut out by better funded health care institutions and even by Fortune 500 companies. What you find now that people in the nursing home, particularly in New York state, live without adequate protection for both staff and patients. And there was a horrifying increase in deaths, particularly for older patients at that time. The state’s reaction was to push to lower those death rates like fines or punishment. And what that ended up means is that many, many patients were transferred to hospital where they may have got a ventilator, but in any case, they did not because they couldn’t save their lives. What might have been better. But you. You were punished if patients died at the nursing home. Make your numbers better by sending them to the already over again. This, I think, for me, was a failure of policy. I wish that we had been able to double down on protection at the nursing homes, including that we would always have had damage in older people from 25% of deaths occur in nursing homes on a normal year in the US is highly vulnerable. But maybe we would have had fewer, and maybe it would have been better if they had not been separated from their loved ones and sent to hospitals which were overflowing. The New York Failure. America had a national stockpile, which was itself kind of a disaster in the pandemic. There were unacceptable lack of inventory control. There were paper masks that had been examined, that had been there for decades, an elastic requirement couldn’t use them, and there was no inventory control there. So that was a separate National Academy of Medicine study. There’s no excuse for that. We had better stuff and we didn’t have it. We don’t think it’s going to be expensive. And we do think of these 25 people that have actually given me. So that is my summary of the beauty and the tragedy of doing this kind of work. I will give a few quick lessons in government work in bioethics. One is that a government project does not reflect an academic speak freely for the most part, but there may not be anybody listening in government. It’s not going to be your voice and exactly what you recommend, but you actually make changes. Working for the government, for me has been an experience of unbelievable bureaucracy which hampers the intended purpose, and it requires and creates indeed some genuine creativity and links that to you can never actually break them. I think of it as a kind of word for public policy. How can I get this done without actually breaking a rule that. In addition, you are forced to think honestly for me as a clinician and this is really a stretch. This is not about you in my career. This is about the population. How the policy you make will affect millions of people, potentially, including premiums. So it is an enormous scope of action and. So in closing of this day, personal crises are not new, but we feel it’s rewarding work different. And I encourage more of you to come and investigate these opportunities. We need your help to do a better job.
Keisha Ray Great. Thank you, Dr. Powell. I always find it interesting that the paths that our crews take us on that we don’t quite expect. So that’s great to hear. Appreciate it. Again, if you have questions for Dr. Powell, please put them in the Q&A and we will make sure that we get to them. So don’t forget that. So next, I want to introduce our next speaker, Dr. Travis Reider, from. He’s the assistant director for education initiatives, director of the Master of Bioethics Degree Program and associate research professor at the Birmingham Institute of Bioethics. He is also a faculty affiliate of the Center for Public Health Advocacy within the Johns Hopkins School of Public Health. TRAVIS His work tends to fall into one of the two quite distinct research programs. The first concerns ethics and policy questions about sustainability and planetary limits. The second, and much newer research program concerns ethical and policy issues surrounding America’s America’s opioid epidemic. He’s the author of In Pain, A Bioethicist Personal Struggle with Opioids. And I’ll turn it over to Dr. Reider.
Travis Reider Thank you, Doctor. A very kind introduction. Also, it’s great to hear Dr. Powell’s comments. So what I’m going to do here is I’m going to give you a little bit of background on why I’m interested in something like public engagement, public communication around bioethics, and then make a short argument. And I hope that we have a really rich conversation after that. So it’s as you could actually hear, even just from that very brief bio, I’m really invested in public engagement around bioethics. So the book that Dr. Rea mentioned in Pain is a trade book with HarperCollins. I have another trade book coming up. I spend a lot of my time writing for the media, doing radio and podcasting, and I find this work really engaging, really rewarding. And so the sort of background view to the comments I’m going to give is that. Bioethics is for something and it sounds really obvious, but bioethics is for action and actually in guidance is meant to make a difference. And so part of my commitment coming to the field is. We have to do something with the work that we produce, and that means communicating it. So there’s you know, I come from philosophy, my ideas and philosophy, and there’s a sometimes a sense that if you do advocacy that’s kind of anti scholarly, at least separate from scholarship. But I think that if you do bioethics, some degree of advocacy is actually deeply connected to your work, and that requires communicating with more than just your colleagues. So the caveat to that is not everybody has to do every part of bioethics, right? Different people have different strengths, talents and interests generating data generating arguments. Being an argument, Smith can be someone’s job and put it out into the scholarly literature to see if it could be taken up into a sort of policy machinery. But I think that at least some of us have to be willing to do this translational work to have a conversation with more than just one another. And that leads to today’s conversation, to the essay and the perspectives. So here’s basically only to make two points in it. It shouldn’t take 10 minutes to make these two points, but there you go. So point number one is that just as science needs science communication, I think that bioethics needs a sort of adjacent field that we can call bioethics communication. And then the second thing that I’m going to suggest is that we need a model for how to do that sort of work. And at Johns Hopkins, at the BURMESTER Bioethics, we have a model that we’re trying out. And I wanted it tell you a little bit about it. So when I first came up with this thesis, I saw the call from Perspectives in Biology and Medicine about public engagement around bioethics. I wanted to talk about this idea of bioethics communication as a sort of necessary field. But I wanted to introduce the Ideas Lab and that that required Jeff Kahn, our director, who has been the motivating force for really opening up space within our institute to do this sort of work. And so I went to Geoff and he was very excited about it. And then while we were writing this paper, we hired our inaugural director, Lauren Aurora Hutchinson. And Lauren is an incredible contribution here because she is an academic, but she is not a bioethicist. By training, she’s a storyteller. She does communication work most recently from the BBC, where she’s produced a lot of features. She’s had a product in an international film festival. She does really cool storytelling work, but she has a Ph.D. in history of science with a focus on oral history. So she has this very cool combination of understanding the rigor of academia and the importance of stories and storytelling to connect with the lay public and with other folks. So we brought in Lauren as the new inaugural director of the Ideas Lab, and the three of us wrote this paper together. So what I’m going to talk about today sort of represents my perspective as a faculty partner in the ideas lab. I can’t speak for all three of us, of course, but, you know, I could call on Jeff and Lauren if we needed some real concrete advice. Mostly, I just want to invite people to collaborate with us on this project. So why the world needs bioethics? That’s like the main claim I want to make here that it does. So science communication is important. I think it’s obvious that is important. Is important both practically because, you know, climate change and coded. We need to know lots of data and facts, but it’s also important for kind of high-minded reasons. Stephen Hawking taught us about physics, and it wasn’t always because everybody needs to know about quantum theory of relativity. It’s because knowledge is a good and the pursuit of knowledge is that good and people should have access to that. So science communication is important for practical and theoretical reasons. But being a good scientist doesn’t make one a good science communicator. So I think we need people who are experts in the translational work, and that’s why we have the field of science communication. So the argument from analogy here is bioethics is equally important. It’s equally important for the two reasons practical and high-minded reasons. There’s stuff that we really need to do work on. But I also think there’s bioethics that isn’t always immediately action guiding. It’s about people trying to investigate how to live a decent and good life. And I care about that work. That’s a bit more theoretical, too, and people still deserve access to that stuff as well. So there’s still a practical and a theoretical reason for communicating this. But again, bioethicist, like scientists aren’t necessarily skilled communicators just by virtue of being good at their field. So we need a dedicated effort. That’s the basic idea. So I’m going to give two case studies. These come from my own research. We can pick lots of different things. So opioids and COVID. So I feel like I’ve had some pushback from folks when I wanted to talk about this. The more traditional biomedical ethics doesn’t need a ton of translational work. This is actually pretty specialized knowledge. We’re trying to figure out stuff for for clinical medicine and for research, and those are specialized audiences. But that doesn’t actually require. That doesn’t mean that it doesn’t require translation. Right. So I think the idea that classical biomedical ethics doesn’t need translation to work is is wrong on two accounts. One, if you’re a bioethicist and you want to talk to physicians, I think there’s still translation to be done because we don’t necessarily speak the same language. So that’s a specialized version of, you know, public engagement. But two, everybody is a patient or a potential patient and everybody could be a research subject. And they should they know their rights and they should be empowered. So there are different sorts of audiences, including the grand lay public audience of everyone. So in my own research on opioids and what you can think about is responsible pain medicine. I spend a lot of my time speaking and writing to clinicians. I’ll speak and physician conferences, nursing conferences, pharmacy conferences, and they’re not bioethicists, and that’s translational work. I speak to them differently than I would speak to Dr. Ray if we were just having a bioethics conversation. But I also do a lot of public speaking in writing because pain and pain medicine and the use of opioids and the related topics of addiction in America’s opioid crisis, these are problems for everybody. Everybody is a patient or a potential patient. People experience pain. This is the grand lay public. Right. So I think all of the work of bioethics really calls for translation whether, you know, one does it or not. So the second case study is COVID 19, because I think when we moved from the traditional biomedical context to the public health ethics context, it gets even more obvious that we need this sort of translational work. So here’s something I found really interesting. During COVID policymakers, journalists, the public were constantly asking moral questions. How many op eds did you see about Should I stay home? Should we societally institute mask mandates? Am I obligated to get the vaccine? So these are clearly ethical questions in. A really striking thing that happened is when journalists looked for expert opinion, they went to scientists. And so epidemiologists were like having their heyday or having their moment. And for a lot of good reasons, there were science communication to be done. But then the journalists were also asking the epidemiologists, so what should we do about school reopening? And that’s just not an infectious disease, not an epidemiology, not a virology question. That’s an ethics and policy question. And there are people among us who work on this who have relevant expertize. So here’s the sort of pitch. Science. Communication is important because people need access to evidence. They deserve access to evidence, but people also need access to reasons to the justifications for actions and policies and reasons are the stuff of normative investigations, not empirical ones. So folks like us who do bioethics, that’s our world. And we could be part of the conversation. We could be helping by filling that role. So the closing point then is to say, how would we go about working towards a world in which bioethics communication is a thing? And so the Ideas Lab at Hopkins is one solution that we’re offering. So this the full title is the complex Bloomberg Bioethics Ideas Lab, and it is a creative agency housed within the Berman Institute that has, as its goal, partnering with faculty to deliver creative products to the public and to other non academic audiences. So our plan is to do both of two things. One, we’re going to do the translational work of bioethics communication, but we’re also going to do the science of bioethics communication to try to gather data and figure out what works best. So with great thanks to my colleague Lauren, who is the inaugural director, we’ve worked up a sort of four component model of the ideas lab as a first out. But what we want to do so here are the four components of the Ideas Lab as we currently think about it. So component one is perhaps the most obvious. It’s this is a place where we were incubate stories and other creative products. Our hope is that faculty will become more comfortable working with storytellers and narrative experts and communicators to actually build this into their projects. From the ground up. Dissemination and translation will be part of the research process, but that sort of thinking from the inside out, right? We take our work and then promote it. We can also think about bringing the outside in. And so the component too is fostering partnerships, partner with successful filmmakers and audio producers and other creatives. So we could obviously help them with expertize, which is the sort of thing that all of us who engage in public engagement do with journalists. We can also try to help them with funding through grants. Right. But part of the goal here is you meet media consumers where they are. They might not come to us to get our translation work. They might not know who we are. But if we go to them, if we partner with top storytellers, then we might just show up in their life and they get this bioethics. Education. Third component, this one is obviously really important to me. As you heard the introduction, I’m the director of our master’s and bioethics program at Johns Hopkins. And so we want this to be incorporated in our teaching and training, interweave communication into the training of the next generation of bioethics and bioethicist. So we’re going have lots of ongoing projects in the Ideas lab, and our hope is that our students and our postdocs and our faculty who want to learn more can gain practical experience in various aspects of creative media projects that are just constantly ongoing. And then the fourth component is both communicating and research and researching communication. So on that first part, communicating and research. The question is sort of how can bioethics communication improve the actual methods of bioethics? So could we, for instance, expand the use of communication techniques in empirical bioethics? Could we trial new technologies to help make progress on thorny bioethical issues? Way to maybe think about that is like is there a role for immersive VR to try to, I don’t know, generate empathy by putting someone in another person’s perspective, right? The sky’s the limit. I think about different technologies and using media in this way in the process of research. Cool. So it’s a method sort of question. But then go back to that first point I made. There’s the science of science communication, which means there should also be a science of bioethics communication, because when you communicate, there’s a, there’s like a satisfaction condition, right? You can do it better or worse. You can succeed or fail at communicating, and that’s measurable. So are we actually getting our message across? That’s the subject of empirical study, and we want to do that as well. So that’s it. So that’s a two for two parts. The world needs bioethics and we’re going to try to give it to them through the Ideas lab, but we really would love for that to be a big community wide sort of collaborative project. And so invite colleagues to reach out and talk to us about that. Thanks so much.
Keisha Ray Great. Thank you, Dr. Reider. We’ll hopefully have some time to talk about the nuts and bolts in the house and the whys. And if you have any advice for people just getting started, I’m going to give just a quick reflection on some of my own media work and then we’ll turn it over to questions. So if you have questions, please put it in the Q&A. We will try to get to all of them. If you have questions for Dr. Powell or Dr. Reid or myself, before we do that again, give some quick reflections of my own around around 2021st May 2021, before the COVID vaccine became available. But around the time when there was some talk and some anticipation of it coming, I did this interview for Box Media and they ended up turning it into it went from an interview that was going to be a part of an pre-established article to its own separate articles, and they titled the article How a Black Bioethicist Sways People of Color to Get a COVID Vaccine. Now, until this up until this time and now I do lots of media, lots of podcasts, lots of interviews, some local news channels, that kind of thing. And I got to just been going along, not really thinking much about it. And in this article I argued that vaccination is an ethical requirement, of course, given that you have all the resources that you need to fulfill that obligation. But it was encouraging people of color, especially black people, to get vaccinated once it’s available to sort of save ourselves, protect our communities. And very soon afterwards, we weren’t in the office. Of course, I ran into the office to grab some books and I listened to my voice, but my voicemail and there was a message that was led by a man who identified himself as a black man, who was very angry that I was encouraging black people to get vaccinated. It was, you know, to the point where we had to we had to get the police involved. And it was my first experience of like, I thought that was doing something really good. And how can someone in my own community be so upset when I’m saying like, I just don’t want black people to die unnecessary deaths. And so after my own anger and my own contemplation of, you know, thinking I was doing something good and I am a philosopher by training, so I had to do those typical philosophical reflections. It really made me think about the duality that is often forced upon bioethicists who engage on public scholarship or public bioethics. Public Bioethics Communications Act, the reader called it, but who also represent the demographics of the people that you’re speaking about. And so for me, I’m a black woman. I often do interviews about black people’s health, about sexism in medicine, gender disparities in therapies, and along with more broad topics. But since I’m a part of this group I often speak on, I have to think about myself as a bioethicist, which I do think of myself as, but also as belonging to communities that are often hurt by medicine, public health, government, media, academia, science, all those things which to people who are not bioethicist or people who are reading these articles that I’m a part of may see me as representing those institutions to them. And so I have to think about who I represent to these black communities and to these women communities. When I speak as a bioethicist and of course, I am always a black woman, so I’m always also speaking as a black woman. So briefly, here are just some some reflections on this dual role. Again, not exhausted. Maybe we can talk about this and keep in. But just very briefly, I always acknowledge that sometimes and very often there will be conflicts in my role. For example, I know we often talk about the ancestry DNA kits, right? I always get asked, you know, should people do that? And I would say, as a bioethicist, I would say, absolutely not. Don’t do it right. Don’t turn over your DNA to these companies. But as a black person, one who understands that our history was taken away from us and a lot of people don’t know their ancestry. I understand its appeal. Right. So a little conflict there. At the same time, when I’m doing this sort of media work as public bioethics, I have to be authentic. I have to be true to my research, but also practical when speaking about my communities. Meaning I have to think about how my research interacts with their lives. Think about how people actually live their lives and think about what’s at stake for them. And then the context in which they receive my words about their lives and always keeping these communities at the forefront. I always like to say this very quickly. Know your late like know my late. Right. Oftentimes, a journalist will ask me to comment on something and I’ll say, it’s not my lane. If find someone else, write it, or to want to take someone else’s plate. I often get requests to talk about disability ethics. I’ll say I could, but not my lane. Here is a list of very, very skilled disability bioethicists. They are much better at speaking on this also way of sharing a community with fellow bioethicists. I always think about clarity, since oftentimes my words will be taken by a journalist or a media editor and they will relay my words to the general public. So thinking about the accuracy, asking to see the quotes that they’re going to use for me via email before they publish the article, I have to be responsible with my word. I have responsibility to my communities. I have responsibility to science and to bioethics, and also responsibility to myself to represent myself in the best way possible. And relatedly, I think it’s always been important to me to translate my research into accessible language. And public bioethics is one way that I do that and thinking about what my words mean for the communities I’m a part of and how they will interpret those words. And then lastly, I decide to protect myself as a black woman. I’m also open to other kinds of violence and harassment online doxing, that kind of thing. So protecting my information, just being safe, right. Because again, there is this sort of the general public sometimes is having this is having this weird relationship with expertise at the moment. And so I just have to be careful and protect myself. So for me, it’s really just about valuing information, valuing education and honoring our obligation as bioethicists to be sources of information and not gatekeepers that keep those things to ourselves so people can make informed decisions about their lives in that and not us doing that for them. Just because these values that I don’t have it figured out, it’s still something I think about and show about it. But continuing to mull over this duality of representing institutions that have caused harm and then being a member of those harmed communities. So again, I have no answers. I hope I didn’t give you that impression, but it is something that I’m thinking about and maybe something panelist can also think about too. Again, thinking about media, thinking about government work, thinking about these paths that our careers took us on, that maybe we didn’t plan. So now we can turn it over to the Q&A. So again, if you have questions, please put them in the Q&A and we can talk about them. I think one basic question that perhaps we can start off with, and Travis is just thinking about the basics. I think where we’re we’re sort of taking it for granted that by what this is should be engaging in this work. We’re saying that there is these spaces available for you in policy in the media. And I would like for you maybe just to start us off with thinking about our bioethicists obligated to to take part in these kinds of things, given what we know, given our scale and what we can do, given our privileges that we sometimes have access to these institutions that other people don’t. And if you do think it’s an obligation, just what sort of basic advice do you have for someone who wants to do this kind of work that you all spoke about? But I don’t have the exact training or wants to figure out just how to get started. Let’s see. Travis, you want to go first?
Travis Reider Sure. Yeah, really good questions. I think my inclination and I hinted at this at the top of my comments, I think my inclination is to say that, no, there’s there’s certainly not an obligation. There’s something like a collective responsibility on the part of bioethics to do this work. But that doesn’t mean that each person has to do the same sort of work. Right. And so I happen to really like it. I find it incredibly fulfilling. And that makes it easier for me. And so, you know, people have access to different resources. So I’m very lucky to be at the Johns Hopkins where the Berman Institute really values this. Our institute, Jeff Kahn, as I said, like he helped stand up this ideas lobby obviously is really invested in this work. So I have all of the support. I have all of these resources. So we should think about the fact that there are risks and drawbacks. So, Dr. Ray, I think your comments about online harassment and stuff, you know, I have certainly waded into controversial areas with my public engagement. And it’s distressing the level of feedback and the kind of feedback you get when you’re trying to have an engagement with a wide audience. So that’s a real risk and a real cost. And I think that, you know, when you’re weighing these things out, having resources and having advantages, they make it easier to take on those sorts of things. Another very professional, you know, cost is not everybody feels like they have the sort of job security to allow them to do this sort of work. Academia still very much privileges. The peer reviewed journal article. Right, the professional conference. And so, again, I have a home where my work is recognized and valued. But I’m as I say, I’m still a relatively junior scholar. That’s probably not true anymore. You see the lights in my beard, but I’m not a very senior scholar, so one could say, Look, look, you’re taking some risk if you decide you wanted to leave Johns Hopkins one day and you’ve got to trade books and a bunch of media stuff. Instead of however many peer reviewed publications you could have done in that time, you wasted a bunch of resources. And so that’s that’s a real risk to I’m lucky I happen to like where I am. I feel valued. But those are the sorts of trade offs that I think make it clear not everybody is required to do this work, but it’s a responsibility for some of us to do.
Keisha Ray Great. Thank you. Here are the ideas.
Tia Powell I would just say and quickly, I agree with Dr. Reider, that I think bioethics overall has an obligation to do this. But I don’t think every individual violin should. We should all play to our strengths. Everybody will be better off if we do that. I do think you can kind of manage how you do this. If you do something for your local city or state health department and are part of a panel. I actually think that is something that you can put with pride on your academic CV, and it will show that you are an engaged citizen and sort of bringing your institution’s name to support locally. So I think there can be that way of thinking about how you manage the demands of the real world in the academic life with an interest in public engagement. I will say I’ve also been harassed online. I wrote a pro-trans rights piece and was harassed for a while by a sort of well-known anti-gay harasser who took the trouble to write a letter to everybody in the administration institution, the CEO and all these people saying this terrible person is supporting gay rights. And they wrote me back, the CEO, the first time he ever really wrote me personally saying, thank you so much for your work. That’s incredible. So that was a tiny ray of sunshine in the online harassment. So I think. Hard work can not always be welcomed by everybody in good work, so you’ll need to make your own assessment about what you’re willing to tolerate. I do think we really need to see in there at the same time. Dr. Reddy, I appreciate your comment about staying in your lane. It’s not helpful if we shoot from the hip, if you haven’t looked at this stuff, if you don’t know about the question at hand and you don’t phrase your comments saying there’s so much we don’t know what we think so far. So I think some clinical humility should go forward and you either should decline things that are not in your expertise or frame this as something where much uncertainty in this field abounds. And here’s where we are. I think it’s.
Keisha Ray Great. I think humility is great. So many times I’ll say I can’t answer that question, but you can ask me another question that maybe is within my expertise or just a flat out no. Right. And I think, again, being in solidarity with other bioethicists, I have a list where I can refer them to. Right. Someone said, hey, do you want to speak about that? No, but I know someone named Trapp. It is very good that you should go to. Yeah, right. That’s not my lane. So go to someone else. So that’s also a way, especially if you’re have colleagues, are part of marginalized populations. Also give them a little shine, too. And we have a question I think is good because it’s a good summary of both of your presentations from Alex’s. It says a summary of the two talks is that bioethics needs to be done well and communicated well in times of regional and national crisis. The public probably expects to hear from regional national figures that occurred throughout the pandemic. But how would you suggest that these regional national figures be informed by well-informed bioethics communicators? Let’s see. Anyone take this 1/1 since you have some government experience.
Tia Powell Yeah, I mean, that’s a really big question. A lot of public figures are put into the position of answering questions and they can get it wrong if they’re not sitting with the people who work for them actually have that data and things move quickly. I appreciate it. Why? It may not always be comfortable as a consult, but I do think. You know, one option is to really look out, reach out to your local public health officials saying, can I connect to or do you have resources? We do a lot of work here on bioethics and related to this or trying to figure out how you can help improve their access to information. It’s very hard to do. And a lot of distinguished public health officials left the post during COVID because of harassment, because of being pushed aside by elected officials and others. So this is something where there’s a lot of room for improvement. We really need to protect and honor that expertise and draw on it, not just when it’s when the hammer comes down, but in advance where we have a little more time to plan and sort things to.
Keisha Ray Make anything that I.
Travis Reider Know. Just that if if any of us are willing to do the work to work with these groups. Yeah. You know, they’re going to need folks and hopefully we can convince them that they need folks. So having folks sit on guideline committees, you know, do that sort of like sometimes thankless, often hard and time-consuming bureaucratic feeling work and some of us need do it. Yeah.
Keisha Ray Let’s see. Let’s talk about. So we have a question here for both Tia and for Travis. So I would love to hear you and Travis speak to the nuts and bolts of getting a seat at the table or an entry into spaces like policy, media, etc. For those of us who don’t have an ideas lab or something similar in our own institution, how else can bioethicists take or make space for themselves in these settings?
Tia Powell So ratings. If you. So I’m sorry. I try to that I just jump in.
Travis Reider No, please.
Tia Powell I mean, I think if you say something sensible in public, it allows people to notice that. I think that’s much more effective than calling up the State Department of Health saying, I have all these ideas. You should totally include me in your planning. That’s not likely to be effective. But I think being amenable, reaching out, if you have views, if you have knowledge, write them either in academic journals. And I also try this. I think it’s incredibly powerful to write about this in more public spheres, to agree to be interviewed for TV and for newspapers, to write your own work in larger publications. We don’t need only to talk to each other. There’s just a desperate need for our greater knowledge of and experience in analyzing these issues. And people can be very grateful to us. So it’s a great, good thing too.
Travis Reider Yes. Yeah. Okay. Yeah. So I would say the I made the comment about, you know, how many peer-reviewed publications could you have done if you were doing all this other stuff? So one thing I’ll note is like concrete advice, especially for more junior folks that could be listening. I feel like you have to do both, right? You know, you have to do what I call keeping my street cred. Right. Published like a sufficient number of articles to your colleagues to show that you’re keeping up with the literature. You know, get the high-impact publications and medicine and health humanities if you can. And then really think about this, this translation. So you have a kind of parallel path so that while you’re doing this, very rigorous. I like to think that I write nicely sometimes, but sometimes dry form of communication. And then you also have this this some don’t you get a little bit more artistic when you get to write for the public and you think about them as dual pathways. And I do think I agree with you completely. The best way in my experience, the only way this is the only way it’s ever happened for me to get a seat at these tables is to have said something publicly enough that you get noticed and invited. I’ve never had any success, you know, like reaching out and trying to insert myself into a conversation. So another piece of just very concrete advice try to find venues that are friendly to public engage, publicly engaged, but fairly academic conversations. So here’s a great resource for anyone who doesn’t use already the conversation. The conversation calls itself this academic content journalistic flare or something like this. Right. And all of the authors are PhDs, academic affiliations, so experts in their field. But the idea is to write something with journalistic flair. It’s a really great kind of proving ground, and it gets picked up in really fantastic venues because they have a really friendly reprints policy. So there are there are like little secrets like that. You don’t always have to get your first piece in The New York Times or The Wall Street Journal. Right. You can you can find ways to communicate more broadly elsewhere.
Keisha Ray Right. One thing that I did that really, really helped me was I introduced myself to our media relations department at my school. I’m in a large medical academic center, and there are not a whole lot of those philosophy PhDs there. Right. That or bioethicist, for that matter, that can do the kinds of things they do. And so whenever a journalist goes to them, say, hey, we have this story, can you find someone to interview for this? And it’s about any kind of disparity, inequity, those kinds of topics that I am qualified to speak on. They come to me, right? They have now said you are a disparity person. So. And that went a long way, just introducing myself to them and letting them know, here’s my CV. These are the kinds of things that I can comment on. And then blogging also helped me. Once I started doing that, people generally saw it said, Oh, well, you can write at a, you know, accessible way for sixth-grade language or eighth-grade language. Now, you would be someone that we would like to have a longer op ed in this issue, and a lot of places do take that up. It’s amazing how long it takes is a couple sentences for a pitch, right? Huffington Post Wired All these places will take a short pitch and tell you very quickly yes or no. And so that is also one way, but getting the skills to write that way, because I think a lot of bioethicists think that they can write for the general public and they absolutely cannot. And so that’s also something important to learn. And we have a few questions for you, Travis, about your ideas lab. I think one of them says I think one that kind of sums them all up is trust in health. Science was destroyed during COVID by the government’s incompetent communications and lack of transparency. Dr. Reeder, how will your program restore public trust and how would you demonstrate that the information you provided is reality-based and truthful? You have a lot of work to do there to restore our public trust.
Travis Reider Yeah, I know. Thank goodness I can ask Lauren how to respond. I mean, so what is this going to be a team of folks trying to figure this out? Right. So the director, Lauren, is going to be building a team of creative folks and producers and innovators to work with faculty who are experts in all this area, all these different areas. And another thing is to go back to remember that like science of bioethics part, right? It’s not enough to just. Right and say a bunch of stuff and hope that it lands. Which, to be real honest, is what I feel like a lot of my early efforts were. You know, I wanted to have a broader conversation. I kind of thought about it as like teaching for lots and lots of people. And I just sent it out there and who knows if it gets picked up. And then as I got a little bit more experience, I would get feedback from folks and realize, Oh no, some of these were much more successful efforts than others. And that’s something that we can and should be paying attention to and actually trying to measure. So we should be using some of those same empirical methods, right, to be thinking about when we’re making progress at a very polarized public, folks who aren’t necessarily always on board with thinking in terms of expertise from anyone. Right. This is not an easy task, but we shouldn’t assume that all efforts are successful, I think is the right answer.
Keisha Ray Do you think this sort of communications work, public policy work, should be a part of how we train medical doctors?
Travis Reider I would love for it to be. Absolutely. I mean, as I said, I run the master’s program. And so we like a lot of master’s bioethics programs, have a lot of clinicians and future clinicians come through their gap year pre-clinical to clinical or before residency come through. And one of the ways that I pitch bioethics and you could think about bioethics, communication in the same way is that lots of clinicians want additional expertise. You know, sometimes they just like, Oh, I’m going to get an MPH because that’s what everybody does, but. A lot of these other fields, like doing an MPH obviously is really important. If you want to design interventions, there’s like a science of public health that a lot of people want to get invested in. But if part of why you want to be a doctor is like a moral mission, then we can invite you to think more reflectively about the foundations of your moral mission. Like what are the values of different interventions, policies, and actions? So absolutely. I mean, my ideal is that all of our graduate students are being trained as communicators, as storytellers, if that’s what they want while doing bioethics so that they’re getting a sense that most people are not going to communicate only with academics. You know, how many graduate students are going to be a professor, primarily speaking to other academics, like much more likely they can be doctors, lawyers, working in nonprofits, working for government, working in policy, and you have to have these communication skills. So I would love for that to be grounded. Yeah.
Keisha Ray Anything that to you.
Tia Powell Yeah. I mean, I think working on communication has been a growing part of medical education for some decades now. I’m not sure if we have not done all the work we need to do there, but there is much better training and certainly when I was a medical student in terms of how to talk to people, so one on one communication, we in our master’s program is is well known for being one of the two founding sites for mediation in bioethics. So really teaching people how to resolve conflict in a way that’s respectful and isn’t just sort of splitting down the middle, but a way to get people to really find an outcome that different sides can agree to. So that’s sort of the next level up within groups and teams with figuring out how to do it. And we also do some writing. I mean, I think a lot of medical schools now use narrative, use other forms to get people to really think more broadly, and begin to think about how can I communicate to a larger group, even beyond the patients, that I’ll see about the real challenges in medicine? And I particularly love that we’re kind of working with students on writing and everything, but I do think they wanted us all the way home. But it is an incredibly important ingredient that is more common, much more common, rather than less so in medical education from the beginning, all the way through graduate programs these days as opposed to.
Keisha Ray Great. So let’s do one last question and maybe you can just give something very brief about it. Part of the challenge of academic politics is the variation in how the service leg of teaching, scholarship, and service is defined. Some bioethicists too many who want to be a public advocate for their ability to serve faces professional minefields that we are discussing. I sometimes think part of that is because most academic bioethics still take place in traditional non-bioethics departments. How optimistic are you about the future by what they see as the disciplines rather than a field of discipline where we have our own department rather than the field? So any 60 seconds, last-minute remarks.
Tia Powell Hmm.
Keisha Ray You want to go first?
Tia Powell I guess I’m not really sure I understand the question. I don’t know that it matters so much that you have a. Department as long as you are in a lot of bioethics is interdisciplinary. So that sort of adds a different challenge. I think what you need is an institution that values what you do, and you can help with that by providing value, by helping people who are in a tight spot out and have them feel like I’m really glad that that person is there. So I think we think too small when we worry about which department, which division. There are successful people who are bioethicists who are dropped into the Department of Surgery. I’m in the Department of Epidemiology like myself. I’m not an epidemiologist. I don’t know. But they’re very nice to me. And in different institutions all across the country. So, yes, we are a growing field. We have a body of knowledge. We can now front departments. But I’m not sure it’s always a good idea. I don’t know that it’s better to be the teeniest, least well-funded, most ignored department in your institution, as opposed to being a welcome partner for an amazing, huge department that has collaborations going on with other institutions and everywhere. So I think that maybe site specific you to figure out it’s you know, we tend to be very thoughtful and modest people trying to do the right thing. It’s also okay to think about power. It really is. How are you going to get the job done that you want to get done? If you want to be a leader, you need to be able to take that on and figure out in your state specific circumstances what is an honorable and practical way forward that you can get resources, move forward, and do stuff, and we don’t do enough in terms of thinking about leadership and ambition. We want to do good things, but that’s a good thing to teach people how to be leaders.
Keisha Ray So thank you. I listened quickly to that.
Travis Reider Yeah. So I am absolutely tracking this question. I don’t necessarily think it has to do with the field discipline question. I think it has more to do with the home institution question. And so I’m going to leave the field discipline question to the side and say I do actually believe that I have a lot more freedom to pursue this version of my career at the Berman Institute that is bioethics focused. I’m a philosopher by training, and I hope I like if there are a bunch of philosophy chairs out there, like, oh, we, you know, we would welcome you in our department. That’s all the great all to the great news. But, you know, my first trade book was part memoir, part policy advocacy, and my bioethics colleagues embraced it. You know, they invited me to speak to their students about it. I don’t feel like I would have gotten the same sort of reception from philosophy, which is this discipline that really prides itself on hard-core argument smithing. Right. So I do, in fact, see this sort of tension that having a bioethics center is a certain sort of freedom in. And those of us who have it are incredibly lucky. And I think this is a reason.
Elizabeth Lanphier I want to extend a huge thanks to Dr. Powell and Dr. Reider for their essays and perspectives on biology and medicine and the symposium that the presentations they shared with us today were based on. To Dr. Ray for sharing her expertise and moderating our time together this afternoon. And really thank you to the audience for the many excellent questions. We didn’t have a chance to get to nearly all of them, but I think that the breadth of questions and the interest shows just how necessary these conversations are for bioethics and the idea of bioethics with a bigger impact, which is really what this event series is all about. So as we wrap up here this afternoon, I also wanted to thank Johns Hopkins University Press for allowing the essays from Dr. Reider and his colleagues and Dr. Powell to be posted online. First, they are going to be up soon. The links will be shared to everyone who registered and attended today, and they will be free access free to access for a limited period of time. They were also dropped in the chat. So if you want to download the PDF out of the chat, I encourage you to do that while this session is still up and running. And then I just want to say that Larry Churchill and I are grateful for the Hastings Center for partnering with us to bring this Bioethics of Bigger Impact series to life online and to have these great conversations about the role in place of bioethics now and into the future. And again today, it was the first of a multi-part series. The next session will be in early 2023, late January, early February. It will be on the role of bioethics in transformational justice and addressing social determinants of health. And we really hope to see you there. Thank you so much.