February 7, 2023

Transcription by machine — may contain errors

Elizabeth Lanphier Want to welcome you to today’s second installment of Bioethics with Bigger Impact. I’m Elizabeth Lanphier. I’m a coeditor of a symposium in Perspectives in Biology and Medicine, along with Larry Churchill on the translational Work of Bioethics. And this presentation is in partnership with Perspectives in Biology and Medicine and The Hastings Center. And I want to let you know that our presenters will be visible today, but the audience and participants will not be. You will have an opportunity to direct questions in the Q&A throughout the talk. So please, as your questions arise, don’t hesitate to raise them and we will have a recording of the session later today on the Hastings Center website as well as later on the Center for Public Engagement with Science’s YouTube page.

So the next session is to preview will be our third session in the Bioethics and Bigger Impact series later this spring. And it will be on environment and climate ethics and bioethics’ role. So although I just want to mention really briefly what other things we get going that the entire issue of the translational work on bioethics and perspectives in biology and medicine is currently freely accessible on the project news website. So I really encourage you to check out the articles by today’s authors as well as all of the work in that symposium after the session.

So it’s my great pleasure to introduce our moderator for today, Dr. Jennifer James, whose expertise as a qualitative researcher and black feminist scholar, researching at the intersection of race, gender and health is really the perfect person to help us synthesize today’s topics about transformative justice and social determinants of health. Dr. James is an assistant professor in the Institute of Health and Aging, the Department of Social and Behavioral Sciences and the Bioethics Program at the University of California, San Francisco. She uses community engaged research and an intersectional framework to explore ethical issues related to experiences of illness, patient provider relationships and resistance and resilience in biomedicine. Dr. James is a true leader in bioethics. As a current Greenwald scholar and an elected member of the Board of Directors of the American Society for Bioethics and Humanities. So thank you so much for joining us today. And I’m going to turn the floor over to you.

Jennifer James Thank you so much for that lovely introduction and I’m so thrilled to see so many folks here today for this great conversation. If you haven’t had a chance to read this special issue and these papers, I really highly recommend and I’m so excited for our conversation. So are playing today. So we are going to hear from the authors of two papers. I’ll introduce them both of sort of each give a little bit of an overview. Then I get to offer you a brief comment and sort of raise some of my own questions, which is always the great thing about being invited into these spaces. And then we’re going to leave lots of time for audience Q&A and really have a conversation among all the speakers. So please make sure as we go, you’re putting questions in the Q&A that we can pose to our speakers and make sure have a great conversation.

So I will separate introducing our first two speakers, doctors Gina Kampuchea and Holly Bo. Dr. Kim Paglia is an assistant professor in the Department of Bioethics and Humanities at the University of Washington School of Medicine and a clinical ethics consultant for UW Medicine Ethics Consultation Service in Scholarship, Teaching and Practice. After Compendia translates ethical theories to clinical practice mediating or facilitating resolution of conflicts and values. Publication or publications Concentrate on critical theory and counteracting race based and gender based oppression in health care, as well as expanding the applications of relationality, empathy, epistemology, and feminist ethics to clinical ethics. Dr. Bowe is an assistant professor in the Department of Pediatrics at the University of Washington School of Medicine and Seattle’s Children’s Hospital in the Division of Pulmonary and Sleep Medicine and Bioethics in palliative care. He is also a clinical ethics consultant for Seattle Children’s Hospital for a scholarship focus on the practice of shared decision making, advancing health equity and improving comprehensive care for children with medical complexity. So please join me in welcoming Dr. is compelling and I’ll turn it over to you.

Gina Campelia Everybody, thanks so much for having us. We are really thrilled to be here, honored to be a part of this conversation. And we just wanted to start off by saying that our work on this project in particular is indebted to our coauthors as well. Alex and Tracy, as well as the insights of another cherished colleague, Maya Scott, and many of the other epic colleagues. We have health care professionals we work with as well as patients and families along the way.

I want us to start just with some of the motivations for this project. As feminist philosopher, a white ally working in clinical spaces, really been driven by deconstructing and reimagining relationships of power and oppression, especially in the clinical setting and in many ways, movements to dismantle oppression since the mid to late 20th century have not changed. The axes of oppression have not gone away. They’ve shifted maybe or become more hidden in certain ways. And so we just as we start the essay, we wanted to start today with this quote from Audre Lorde from an event in 1984 where she states, racism and homophobia are real conditions of all our lives. In this place and time. I urge each one of us here to reach down into that deep place of knowledge inside herself and touch that terror and loathing of any difference that lives there, even if the space it wears. After the Lord made that statement about three years before Bernard Lowe’s essay Behind Closed Doors Promises and Pitfalls of Ethics Committees, where he identifies ethics committees are concerned with the ethics committees relating to representation, groupthink, and ultimately judgments about fairness without explicitly discussing acts of oppression. But of course, the connection between the two can be readily made. And over the last several decades, critiques of mainstream bioethics from critical theory such as feminist theory, black bioethics, disability theories, queer theories continue to drive home significant issues of marginalization in representation in the field of bioethics generally. What we’re here to talk about today is how we experience these concerns acutely in our work in health care as health care ethics consultants feeling sometimes constrained by ethics, operating behind closed doors and reliance on standard ethical approaches that don’t always resonate with the patients and families who are connecting with our patients. And so I’ll turn it over now to my colleague, Dr. Vo, for a look at a particular case, just to see a little bit more in depth what we’re seeing in the clinical setting.

Holly Vo Thank you. As Gina mentioned, we both encountered political situations where it’s unclear how we should approach the ethical dilemma due to tensions between various ethical frameworks and values, and especially in contexts where one ethical framework may be privileged unfairly over another.

So here we present a case illustrates this tension. Vivienne is a 50 year old who was found down by a neighbor and now admitted for a severe anoxic brain injury following cardiac arrest. Criticism of the medical teams that she’s medically stable but unlikely to regain consciousness or breathe independently and is at risk for complications associated with prolonged ventilation. Vivian is very close to her family, and a family care conference was held to discuss next steps. Her husband and daughter prefer I do not attempt resuscitation code status, as Vivian has previously explicitly stated, not wanting to stay on a ventilator without hope of regaining consciousness. This is in contrast to her mother, who actually pleas for full code and additional and all interventions. A private family meeting was then held where the result being that they agreed to not attempt resuscitation, but that she remained the ventilator for another two months to assess next steps. Her husband admits that though Viviane likely wouldn’t want to remain on ventilation, he was not sure how she’d balance her own once with the obligation to her own family preferences and relationships, given its importance in her family’s value system.

So since it’s unclear how Vivian would have proceeded, there may be a few different approaches to at least consulted with weigh the different treatment options that this consultant and her team may choose to. One, prioritize respect for autonomy and thoughtfully, but firmly transitioned withdrawing life sustaining therapy in line with her reported expressed preference, possibly over the family’s objections. They may choose to act on the primacy of respect for autonomy, but incorporate the possibility that she would have valued her family’s preferences, possibly continuing at least for a time or as a third option here. Recognizing differences in the value based frameworks, guiding health care professionals and family, they may choose to center the family’s relational approach alongside individual autonomy centered approaches, and possibly continue at least for a time. So one caveat is how we know that this is a lot more complicated than it appears her in the slide. And there’s a lot more gray between these different approaches. However, when each of these paths push to its own logical conclusion, this is what we may end up getting. And though the second and third ties to the same medical action, the third allows us to actually center the family’s value system instead of centering our own and trying to mold theirs to fit into ours. When we consult in cases like this, sometimes we feel constrained in our ability to equally consider the second and third paths alongside respect for autonomy. As at this console ends, we’ve often relied on Beecham and children’s principles of biomedical ethics. And although Beecham and Childers discuss other ethical frameworks that include virtue and relational approaches, in our experience, the four principles of respect for autonomy, beneficence, non maleficent’s and justice have often been favored in the practice of bioethics in the US, and by centering the four principles and marginalizing other ethical approaches and moral frameworks, we risk perpetuating the oppression of our patients and communities that aren’t represented in the field of bioethics. For this case, it feels unjust that what is clearly the family’s central does was clear. The central value based reasoning for this family is an immediately and without advocacy fairly considered. And so in order to center equity and justice, we need to change our processes and elevate approaches that can center marginalized moral frameworks. Therefore, we propose an approach utilizing transformative justice that helps clinical ethicists meaningfully attend to diverse ethical approaches and analyze power imbalances to transform the last diagram to better represent what we’d like to do. We converted this one here that doesn’t appear to have a hierarchy or order of consideration associated with the pathways. And with that, I will go with Gina to go into this quote that we put that resonates that both of us very strongly.

Gina Campelia Thanks so much, Holly. So just as Holly said, we have felt like we needed a kind of framework to recognize and counteract depression in the consultation process specifically and one piece of this. Then the ethical reasoning itself. In other words, we really are hoping to work towards transforming our ethics practices so as to counteract or avoid a particular reality for some patients and communities that, as Foster puts, appear. As soon as the patient is admitted to the hospital, she is subject to an entirely different philosophical jurisdiction from the one to which she was subject outside the hospital door. Now this is just the start. But alongside our coauthors and many of our colleagues inside and outside of our institutions, we’ve begun to expand the standard framework that typically get employed in clinical ethics practices. And our goal here is not to abandon the four principles that some might reasonably argue for that, but rather what we’re trying to do is find a similarly practical tool or framework that draws standardly marginalized ethical perspectives to the center. We’ve organized this tool by approaches that we’ve seen to be relevant across stakeholders dealing or grappling with ethical conflicts in clinical settings, then offered key questions and tips for consideration. It’s important to note that it’s not meant to be a new list or an exhaustive list. These are very common ethical approaches that have been relied upon across societies and centuries to some extent or another. Many of these approaches are also present and before them in children. Those principles of biomedical ethics, though not always employed in clinical practice, as Holly mentioned earlier. The transformation occurs through expansion and inclusion and recognition of power and privilege throughout the. Worksheets are the tool. And so if we take, for instance, thinking about the case you’ve just heard about, consider the consequences consequential of them, as many of you know, considers benefits and harms in a broad sense. Typically in a clinical setting, we often focus on how different interventions will affect the particular patients in this case. So centering the patient’s well-being can simultaneously marginalize or obscure the consequences to the family or the patient as part of that family unit. So our tool demands that we ask how power and privilege affect what counts as relevance, as ethically salient consequences, and how those consequences are weighed against one another that Vivian and her family. We would want to be able to centralize the possible consequences to familial relationships with each possible pathway and integrate the moral priority or importance of family well-being in decision making and recognize how this family might be othered or marginalized for not using the same ethical language or prioritizing the same principles as we typically do in in US medical culture, such as the priority of priority or primacy of respect for autonomy. Ultimately, we want to be able to hold all these approaches together such that one doesn’t automatically outweigh the other simply because it’s the more dominant value in U.S. medical culture. So instead of one value or principle, such as respect for autonomy automatically trumping another such as familial well-being or familial autonomy, features of the contact will help us to weigh and consider the different values and ethical approaches equitably. And with that, I will and thank everybody again and I turn it over so we can prepare for the conversation.

Jennifer James Thank you so much. That was wonderful. I yeah, I so appreciate it. And any time anyone said to Badger Lord, you’ve got me hooked instantly. So that was a great talk. So just a reminder to everyone to please put questions in the Q&A. We’re sort of saving all of our discussion for the end. But as questions come up, please put them in the Q&A so we can get to them.

And I will introduce our next speaker. We’ll turn it over next to Dr. Gayle Henderson. Dr. Henderson is a professor of social medicine in the School of Medicine at the University of North Carolina at Chapel Hill. A medical sociologist with training in public health. Her research is focused on ethics issues in clinical trial decision making, race, ethnicity and genomic research and preventative genomics screening. She was department chair from 2009 to 2016, director of the USC Center for Genomics and Society from 2007 to 2019 and member of the National Human Genome Research Institute Advisory Council from 2016 to 2019. The most recent publication with Nancy Kang and Larry Churchill is bioethics Re-envisioned a Path towards Health Justice. So please join me in welcoming Dr. Henderson.

Gail Henderson Jen, thank you so much. And thank you to Larry and Elizabeth for this opportunity to join in and talk for briefly about sort of the other side of the coin, which is sort of much more macro level issues and justice. And I really appreciated Holly and Gina’s talk, and I’ll refer to it a couple of times, so I’ll just share my slides. Okay, so. What? How I’ve titled this talk Looking Upstream for Justice. And as as you know, the social scientists working with bioethicists in an interdisciplinary department at that university in North Carolina. So I bring a somewhat different lens to this. But my long time working with colleagues, I think, and this recent book that we’ve published, I hope, gives me some perspective on making recommendations. So all of you know that we have major justice movements in the United States which are pushing a new vision, protesting social injustices, pushing for a new vision of equity. This is hardly hardly bears emphasizing. It’s been in our media, it’s been on our in our literature, the webinars. It’s really everywhere. So and before we started, I asked Jim. Well, what what could we what could we add what in this in this webinar? Could we possibly add to this really amazing effort that has gone into considering racism, sexism, etc.? And what essentially what what I’d like to do is, is cover briefly what what we have recommended and this is Nancy King and Larry Churchill, and I recommended in this new book of how bioethics might fit into this broad landscape. And we argued that bioethics needs an expanded moral vision. The field must embrace a broader and more meaningful view of justice, principally by incorporating the tools and the insights of social sciences, epidemiology and public health, and work together to understand the ethical implications. And we began this work which culminated in this publication in 2020 and are painfully aware of the many articles that have and studies that emerged since then, but still feel that the thesis of our book is worth reiterating, and that is that the work about the bioethics field has been largely captured by the concerns of health care institutions, focusing on dilemmas raised in doctor, patient and investigator participant relationships. By newly emerging technologies informed consent in other slices of time problems of life ethics while paying less attention to upstream structural injustices and their profound consequences for the health and well-being of individuals and communities. I’ve called. And we’re we’re acutely aware of the fact that many bioethicists have focused on justice. But we argue that justice, autonomy and beneficence in my life and sentence are essential. Aspects of Bioethicist toolkit. Justice should be also. So how do we interrogate justice? And health justice. Gene and Holly’s work features contextualizing interactions. Within the hospital where many clinical epistemic dilemmas I’m so sorry to take place. And listening to narratives told by patients and families. Offering a new ethical framework, and we support this approach wholeheartedly. But we also tend to help justice upstream outside the hospital. Considering the structural injustices that create despair, disparities and ideas about ameliorating injustices through continued engagement. And I’m going to now turn to just a few of what I think your kind of take home messages or important issues in epidemiology that are that are fraught. Fraught with ethical implications. On the first. It’s looking historically at the three eras in epidemiology. And here the recent so-called discovery of of structural and social determinants of health. It’s really far from new. Over 150 years ago without understanding the mechanisms of disease. Medical and political activists like Rudolf Virchow and Friedrich Engels identified poverty. As the essential predictor of morbidity and mortality. But this knowledge was eclipsed by the germ theory of disease, identifying one cause and one outcome. Which prevention and treatment strategies will be applied. So there is happy news for people who is saddened by the miasma theory of disease conservation. And it was powerful, a powerful theory of disease, personality. And then since that time, even into all parts of the 20th century and beyond, advances in statistics and epidemiology made it possible to measure many individual and community level factors often identify risk factors for a condition. Without the biomedical mechanism being understood, it’s a so-called black box epidemiology. And for that, you just have to think of this famous study of smoking in lung cancer, which identified smoking as a risk factor and powerful receptors, but without really understanding the mechanism. So. What what happened during this time period as as much more sophisticated models of disease causality were were invented. There occurred something that has been called the epidemiology wars. Social epidemiology focused on societal determinants of health. Risk factor. Epidemiology focuses on behaviors and exposures. Molecular epidemiology focused on biological mechanism. But these are not value neutral. If one focuses on the proximate or very nearby factors that lead to disease, one tends to blame those afflicted. Focusing on distal factors shifts to sexual structural conditions. And I was interested at that at Holly Poly and Janice use of the trans. Power. And because Nancy Krieger reminds us that power is implicated in unequal systems structuring exposures. So in the context of much broader kinds of studies of risk factors. We can’t just assume it’s value neutral. And I want to mention one of my really one of my hero epidemiologists, Jeffrey Rosen, who wrote about. How upstream population level factors should be considered. Following social theorist Emile Durkheim from the prior century who observed, okay, I may have this. Yep. A little on this. And he observed that society wasn’t just comprised of individual actors, but society was an entity in itself. And grows in sick individuals and sick populations. Explore how characteristics and populations in which individuals live can be really different from characteristics of those individuals. And you can’t take social facts and translate them to individual level factors. They’re not the same necessarily. You just have to think about what’s what. Does living in a high unemployment area mean for individuals who are employed or not employed? It’s quite different. Those without jobs are exposed. Those with jobs are unexposed. But at a societal level, living in a high unemployment area has adverse effects on those groups. And I’m I’m talking about these. To give you a sense of the complications and the nuances that would begin to be articulated, not just this model that you can see on the right where. We have a lot of different factors, multi level, you know, macro Mizo individual level factors that are affecting individual and population health. But it’s it began to be understood that it was so much more complicated than that. Hey, just a couple more. Actually, just one more, one more data side. And that is this was just one of my other favorite concepts, and that is. Fundamental causes. Now, initially our Bruce Bruce Lincoln joke, Fallon argued back in the late 1980s and nineties that Penn’s socio economic status. And the fundamental cause. What does that mean? It means that. Their impact persists over time, despite really radical changes in diseases, risks and interventions that happen to produce to reproduce them at any given time. So. Individuals. So individuals. Can have negative health outcomes just based upon their socioeconomic status and not not related to this intervening factors. And and like socioeconomic status, race in the United States has an enduring connection to health and mortality as well. And. Williams, Lincoln feline and many others have have identified identified. Racism as a fundamental cause of disease. So in other words, in the same way. Racism that is experienced by individuals no matter what the intervening variables are, is. It is a cause of poor health. And I also want to note that that these are individual these initially were individual level. Activist. But lately, and most of you are very well aware this that research has coined the term structural to identify institutional and societal level factors that are that are similarly fundamental to analyzing disparities. And I listed a couple of authors there, but. Importantly, and I think Jen, in her work on intersectionality, doesn’t need to be reminded of this. But importantly, at the at around the same time, sorry, around the same time, Kimberlé Crenshaw, a lawyer who is developing a court case for African-American women, realized that it wasn’t just their being African American or that they were that they were women that produced discrimination. But it was the intersection of both. And just as as with the fundamental causes, this intersectionality now people have have started to think about structural intersectionality. So we looked at at the level of, for example, states trying to understand how structural intersectionality might affect health. So with that, I just leave you with these kinds of questions, like if you interrogate empirical results in disparities research, what would be the the ways that collaborating with. People like me with social epidemiologists and others. What what what are the kinds of questions that that should be asked of collaborations? Well, what justice implications are inherent in the empirical approach presented? And those were the examples, very brief examples I provided in how our individual and societal level variables presented. How is the structure of society identified and analyzed as a fundamental cause and disparities? And there are different dimensions of racism being measured, including structural racism. All of these have an impact on validity, usefulness and possible intervention programs. And my there our goal, Nancy and Larry and I, in putting together the book, is to make an argument for collaboration between bioethics and social epi and other other social science and public health fields, because it’s important to sort these ethical implications together. So thank you very much. So sorry for my cost. I tried. Okay.

Jennifer James It was barely noticeable. Don’t worry. Oh, thank you so much, Dr. Henderson, for that. That great presentation and overview. Gosh, I think you raise such important questions, and I wanted to sort of continue to invite people to put questions in the Q&A, but also if folks have answers or insights or additional questions from those questions, I think those are great things to raise to our discussion. So before we get into the Q&A, into the session, I get to take take the prerogative to raise some of my additional questions first.

So I’ll just reflect for a few minutes on these two presentations and the two papers that upon which they were based. So, you know, I’m just really grateful to be in this conversation with with these amazing these amazing researchers and ethicists and speakers today. And I know I’m not alone in reflecting on some of what Dr. Henderson spoke about on that. 35 months ago now, which seems wild. You know, my life and work changed in really profound ways for all of us, right? The COVID 19 pandemic and the racial justice movement drew much needed attention on racial violence in this country in 2020. And it rocked many of us to our cause. There was immense pain and trauma across many communities, trauma that is continuing constantly as we are seeing in the media. And what I think has been so profound for me is the way that health, medicine and bioethics began for the first time or the first time in a long time to really take seriously social oppression. As a medical sociologist who’s been studying and thinking about racism and intersectionality for many years, it’s been a bit of a feeling of like, welcome to the party. It’s kind of awful here, but there’s some really excellent books I can recommend to try to understand it better. And as someone in bioethics, I felt really strongly that we must take this moment and make sure we’re working towards doing bioethics differently. Right. We’re thinking today about bioethics with a bigger impact. And what’s fantastic about these two papers is I think they are allowing us to think about bioethics and bioethicist and how they operate on many levels, sort of thinking on the micro MSL and macro level, I think it’s important to think about how we intervene to do things with a bigger impact. But perhaps more importantly, how do we make sure that as a field we’re mitigating harm that we as bioethicists can do and have done so doctors can? Paglia and Beau began their piece by asserting that clinical ethics consultants bear witness to the harm of intersecting axes of oppression. And I challenge this a little bit slightly. I think ethicists witness harms of oppression every day, but I think the field has not done nearly enough to bear witness that is to make testimony of these harms. And we certainly have not led the charge of speaking out against them. The authors argue that the four principles have failed to address oppression and they assert that while they have been adopted in the use of our principles, have been adopted in the US for their depth, complexity and applicability, they also align with, quote, Eurocentric priorities of impartiality, universality and liberal individualism. And I think that speaks to a few. But I’ll point to one sort of central problem in the field. Bioethics still has a problem of privileging impartiality, and this is both concerning in the case of questioning the role of those with with experience being leading voices within the field discussions that remain ongoing. There is a recent job issue that wrestled with this, and it means that bioethics, I think, still often shies away from the political. The truth of race as a social construction that Dr. Henderson spoke at two and racism as a fundamental driver of health disparities is not new. It’s been well-established in the social science literature since the late 1900s, and I love saying it that way because it makes it sound even more old timey, like the late 1900s, but yet until 2020 discussions of racism. I think we’re still quite marginalized in in health, in medicine and in bioethics and understanding of racism and intersectional oppression and their links to health outcomes. I think many of the things that were cited here today are greatly split about that should be absolutely mandatory within our field. I think to study or intervene on health without this knowledge should be considered tantamount to some sort of bioethical malpractice if such a thing exists. The conversations we need to be having are the ones raised in these discussions, not are these things real or do they need to be considered within bioethics? But how do we operationalize them? Over the last few years, we’ve seen many calls for. Yes, please. Let’s talk about racism as important. How do we move beyond that to think about how we operationalize these concepts and actually intervene? Dr. Henderson raised the question in her piece, and FDI trainings will lead to meaningful change, adding, This is a really important question and one that shows my deep cynicism because I kind of think no deal has never been about structural and institutional change. Racism is embedded in our system so deeply. We need to find new tools and bigger ways to address it. And I think doctors can tell you and will offer a new model for doing this through transformative justice. How do we think about transforming our systems and our tools to to in the pursuit of justice? This is the way to operationalize this work on the micro-level in the context of clinical ethics in the patient provider relationship. And I think there’s an important reminder that ethics can’t stop at the clinic doors, right? We can’t just be content to bear witness to it too, to think through the harms of intersectional oppression we see in the clinic. And Dr. Henderson reminds us to look at the social determinants of health. I argue that racism as a structural determinant of health, right? We can’t ever fully address all the social determinants of health like housing, food, education, transportation, access, health care, and on and on. If we don’t intervene to address racism and this makes racism a key bioethics issue, we have a collective moral responsibility to intervene on structural and societal levels. We must consider how to have not just a bioethics, but perhaps a bio politics that’s sometimes within our discipline the need to intervene on systems of power. Dr. Henderson just mentioned lifeboat lifeboat effects. I think this is such an apt metaphor. I think we both need to see if we can stop the stream or build a dam or some other metaphorical thing we do with water somewhere. But I also think we need to think about if and how. There are places where bioethics is adding more water either to the lifeboat itself or to that river, or that it’s rushing down. So I want to being back out in for a second. So from the macro, I just sort of really think about the message. I think we have to remember that health care isn’t only the site of the downstream effects of racism, but a site of the perpetuation of harm itself, right? It’s a place where racism is created, it’s reified, it’s perpetuated every day. Those of us who work within hospitals and academic medical centers must access health. How are we addressing the racist harms perpetuated by our institutions? And so I’ll offer a few examples, I think, through, you know, on which families, as Child Protective Services called at your institution, which departments have security or police stationed, and who are the people who are seeking care there? My cats here. She has a really strong feelings about racism in medicine where a patient comes in shackled. Is it the policy of the institution to have the shackles removed? What type of language is used in medical records to indicate when someone is choosing not to follow the advice of their provider? And is that different across different types of patients based on how or why they’re declining care? What are patient experiences at birth and what are the birth outcomes that your institutions do? Residents of color feel supported by the institution? What about the non-clinical staff? How do they deal with in this environment? And I think, you know, sort of what I think about his health care should be a fundamental right in this country. I think many of us think that it’s not right to be. But what’s really concerning at a point where we can really intervene is the way that health and health care end up being the site of violence, oppression and harm for many. So what’s the role of bioethics? Are we seeking to protect the systems and institutions that perpetuate harm or to transform them to better serve our patients? Are we seeking to uphold power or center and engage community instead as a way of dissenter in that power? So my question sort of to all of you, everyone here is how can bioethics be a leading voice in this conversation? What is our impact on these systems of oppression? Are we perpetuating them or being be able to intervene? So those are all really big and slightly rhetorical question so that they way to our Q&A, I’ll invite our panelists to join back on screen and ask something more concretely, maybe slightly, maybe. I mean, it maybe it’s not completely, but I think of it a little bit. So in thinking about social oppression, how do you think bioethics falls along the spectrum of intervening or causing harm? And what are the ways that we can or should intervene on the harms and oppression caused by our health care institutions? Look, anybody wants to jump in.

Gina Campelia I just want to thank you so much. And I thought just as well, Chad, that your comments are so just acutely on point and really resonate with me and the work that we’ve been doing as ethics consultants with many of our colleagues at our institutions. I think that thinking about interventions at all of those levels is critical. And while in some ways what we were talking about today is, is on a micro level, it intersects with that level in many ways, right? Thinking about the makeup of your ethics committee, the representation among the ethics consultants and our practices. Our practices. Right. So part of the work developing the tool is to say, look, we’re relying on Eurocentric bureaucrats strands and values in U.S. medicine that don’t always resonate and actually marginalize and other value systems within the country. And and and so finding ways to dismantle that, the the aspects of white supremacy that come through that. Right. So the impartiality you talk about and the thinking that there is an objectivity here as opposed to subjectivity that’s imposed to ourselves as ethics consultants in some ways. And and so I think that’s something that Colin and I and our coauthors and other colleagues, other institutions have been working on knowing. And I think a lot of ethics consultants struggle with knowing that is the case, and then also not having alternative frameworks or practices to rely on. And so that the work we’re doing is we’re trying this first step down that down that road. So many people have have talked about these issues. And even even though that discussion is often marginalized in mainstream bioethics, there’s been plenty of work on that point. It’s there at our fingertips. The question now is how do we integrate it not just in how we interact with specific patients and colleagues, but also in our general practices that are guiding our committees and our consultation processes? How do we advocate for changes such as having not just an ethics consultation service, but an equity consultation service that can operate together in unison? And so and so those are some of the things we’ve been thinking about.

Holly Vo I’ll say to add on to it, Gina’s saying, which is very much what I was thinking as well, is that we really work on within our ethics, our ethics console services. We have all these frameworks that we have learned and we’ve kind of dabbling. But then there’s like main dominant ones that we work with, which is from our experience is like the four principles. And I think that one of the goals for setting up this new approach is to also allow different questions that ethicists can ask themselves and related to each particular patient. So that’s more of a systematic way of approaching it. It’s not that like I know all these frameworks I get to the bedside, yet I kind of like default to what has been practice or what I know is more commonly practice. But then using a systematic questioning approach to ask for each actual intervention or I’m start actually in consultation can help bring in the issues of racism, white supremacy and anti-blackness in a way that perhaps may be overlooked or not as present and easy to integrate into our current systems.

Jennifer James It’s super interesting. And just as a follow up to that, I think there was a question raised in the Q&A about are there other countries or other models we should be looking to for guidance on ethical practices that aren’t so centered on autonomy, that aren’t so centered. The ways that are sort of, as you mentioned, are Eurocentric approach to care. Who do you sort of look for as examples or should we be.

Gina Campelia Looking for towards its examples? It’s an interesting question because because those value systems are in the U.S., too. Right. And so it’s not like we have to look internationally to find value systems that are grounded in worldviews, that are marginalized in the U.S. and even originate in the land and territory that we now occupy. And so that I think it’s a really important question. Right? Who do we look to? Ideally, a lot greater diversity of values. That’s the key. I think that we try to draw into that tool is the analysis of power. So which value systems are marginalized? Othered, oppressor. In some ways, regardless of where they’re coming from or originating or what worldviews they rely on or what value systems great. And but to some extent, really acknowledging the dominant value systems originated in a Europe Christian Eurocentric model world view then and and that that that’s not the only worldview that lives and breathes in the U.S. And so I think that that is part of the work that we’re trying to do, is it’s that combination of recognizing, looking around a fair here that it’s not like we have to go outside the U.S. to find a diversity of worldviews and value systems that arise from those.

Gail Henderson So and I just wanted to say a couple of things in response to your really excellent discussion. One is that social epidemiology also and other kinds of social science disciplines always have problems with impartiality. And and those who step out of this bounds, like Nancy Kryger at Harvard, are. Not necess had not necessarily been. The norm, although the work that I mean, it’s very hard not to want to cite her work because she does talk about. The ways that power and privilege structure, exposures and those can be translated into what now people are talking about with structural racism, structural social conditions, or structural social institutions that are structuring according to not just race but class and other aspects of marginalizing people. So so that’s something that I think people I think it’s it’s a kind of false. My first idea that that that the methods and I’m sorry that that the that that that epidemiology itself is going to give us the truth. And in fact. No, not now. Not hardly. But what it does, I think, increasingly is give us tools to problematize and really attend to the ways that measurement may be structuring the kinds of answers we’re getting, the biases that are inherent in almost everything we do. And and and I think that kind of empirical approach is bereft without an ethical or bioethical sort of partnership that to which we can say, well, well, what are these things that that we’ve learned data wise and what’s especially what’s missing, because a lot was missing until recently. And that makes me want to ask sort of back to you, Jen, and to the others that the last three years and the the ways that racism has been not only uplifted as a as a theme, as a social movement to try to counter it, etc., but also as as people who are really trying to understand how to measure this and how to demonstrate empirically how how toxic it is for health and for other kinds of outcomes. So so it feels to me like and I guess I’m also coming off of watching the 1619 project on Netflix. I have to just raise that because I’m so profoundly impacted. Coming from UMC, you can understand my sense of loss there that that we’ve got a really different articulation of our history of what’s happening both on a micro level as as Hannah-Jones talks about her own family and on a macro level as she talks about the history and some of the, you know, horrific events that dealt with slavery and the aftermath of slavery. So so I feel we’re in a different world now. And I would like to think that we’re in a world where we can just leap forward and and make big progress on addressing what now we have data and we have concepts and and frameworks, as Jane and Holly put forward, to really reconsider what it is that we’re that we’re doing and understanding. So I’m sure I had something to say, but I forgot.

Jennifer James No, that’s great. And, you know, it links to something that I’ve been thinking about and also a question that that came through that I want to ask you. Yeah, I think you’re right. I think we’ve we’ve moved this conversation forward. I think many more people are comfortable sort of with both addressing our own sort of implicit bias, acknowledging and as well as that, like racism is a thing in our society. I think there’s a lot of acceptance of that within our field, like sort of that truth. But I’m still struggling with are we at a point where we feel like we can do things about that? Do we have the tools necessary? Do people feel like they have the ability to do it? And something I questioned in the chat was feeling like, how do we push for social and political change when the systems we work for might be hostile to that? Like our hospitals don’t necessarily want socialized medicine and they pay our salary. I’m thinking about colleagues working in Florida. We’re hearing like, you know, they’re like requesting everyone’s emails to see if they’re mentioning CRT. Like we live in a society that is very hostile to this. And, you know, I see, you know, how am I advocating for like changing systems that benefit me, right? Like the way that like now H has funded research have been quite racist over the years. Am I intervening on that or like right in the way it’s my own NIH. Grant’s right taking advantage. So I’m curious how you all think about both. Like, do bioethicists have any sort of special moral imperative to access beyond what an epidemiologist might have or any other field? And yeah, how do we work with in systems that might be hostile to that kind of change, knowing that, like there’s a lot of them out there, How do you all think about approaching this work? Assuming any of you are like, Well, this is how I overthrew my hospital system, let me tell you about it. But no, I mean, you know.

Gail Henderson I wanted I just wanted to quote Lisa Parker, who argued that bioethics can and should be a form of activism going beyond focus on the individual to taking up issues better analyzed through the lens of population based approaches, group identities and socially constructed vulnerabilities. So and the first part was what I wanted to ask ask you all about that, because I think you’re right. I think people who take activist stances within institutions don’t always fare well. But that’s what she thinks for bioethics is should should be.

Holly Vo In my years. I don’t have the answer. Your question, Jen or Gayle.

Holly Vo Those are very big and.

Holly Vo Wonderful things for us to be thinking about. But I think from what I’ve read and what I’ve learned, what I find in the field of bioethics is that we are AI, we are slower than other groups and other communities in our country to try to take a better and stronger activist voice. And so I think for me it’s a lot about learning from collaborators, it’s a lot about learning from groups who’ve been doing equity work, CRT groups who’ve been doing advocacy and finding ways that we can join and elevate voices that we know and recognize. Like you said, our moral imperative. Like we know that this is wrong, but we haven’t been great in the past many decades of actually doing something about it. And so I think that from the work that Jean and I’ve been working on, we take a lot from CRT colleagues who take a lot from theories out of other people that have written about how to do this and try to incorporate into a more systematic way of doing that. And so my small answer to your big question is I think we really need to start outside of politics and learn from others and do this better. I think we need to we can eventually when we learn how to.

Gina Campelia I think I agree. And I think another piece of this is sometimes they put a little bit too much under under the activism umbrella when really it’s just good health care practice or good ethics or. Right. So thinking about it as an example. It can there’s a lot of back and forth about whether and how to talk about racism in a hard. And so I think that as an example of how do I incorporate that into my ethics and what’s the best way to do that and when should I do that and so on. Knowing that that’s not an activist move, that’s just part of acknowledging ethically salient, clinically salient features of the context of that patient. And and so I think balancing both what is what is our role to really push change in the activist sense, whereas what’s just our very basic role to push change because what we’re doing is harming people in very real ways and it’s not actually effectively supporting health and well-being. And I think a lot of what Holly and I and our colleagues have been working on in our papers is is actually that first part. Somebody some people might categorize it as activism, but I don’t think it is. I think it’s really just trying to make sure that our ethical practices are just and right and leading to supporting and facilitating good patient care or counteracting ways that don’t. So I think that in addition to what people already already said, is something I think about as well.

Jennifer James Somehow already at the past, the point where I was supposed to wrap up the question. So instead of doing that, I just wanted to sort of actually pull out some things that folks raised in the question and just sort of throw them out there, because I think a lot of these are questions that none of us have the answer to, But we all need to be think about this about and some of them are ideas. And I just wanted to just go through a few of those and then turn it back over to Elizabeth to wrap it up. But first, just highlighting whose voices are in consultation. So people are asking, what do we do when we think about the white supremacy that’s embedded in our Ethics committee in consultation? I think that’s so important. People are asking me about how we advocate and think about narrative ethics and narrative medicine and the role of other professionals like chaplains and like social workers to intervene on multiple levels of the system. So I think thinking about who all is in the room for these conversations and how we expand that is important. People are asking what data we should be collecting to see how our institutions are doing. I think that is a phenomenal question that we should all be asking our institutions What do we already know and what can we know? And people are talking about something that I think is such an important point to end on is how we engage community. How are we inviting community into these decisions? How are we thinking about and privileging community? What I think gets to some of the topics of relational autonomy that came up and how do we make sure that we have broader representation in these decisions. So I think I do sort of want to end my thoughts with like, I think there’s a big conversations about what knowledge is privilege, what ways of doing this work is privilege, and how do we keep expanding that to thinking about the people who have been doing this and doing this well across many disciplines for many years. And so that’s where I’ll start. I’ll turn it back to you with that.

Elizabeth Lanphier Thank you all so, so much. I think that, as I’ve just said, many really extraordinary, deep, thoughtful questions that the audience is bringing up, I think demonstrate that the necessary gist of these conversations in order for bioethics to have a bigger impact in trying to shape what that impact will be. So I want to extend a huge thank you to Doctors compiler Evo Henderson for their essays and the Perspectives in Biology and Medicine Symposium and their presentations today. And to Dr. James for sharing your expertise and moderating our time together, which has been just fabulous. Larry Churchill and I are so grateful to Perspectives in Biology and Medicine for hosting the Symposium on the Translational Work in Bioethics and for Johns Hopkins University Press, who has currently made the entire issue freely accessible. So please go out and check out all of the essays. There’s no paywall. Share with all of your academic and nonacademic friends and colleagues will be accessible all month. And thank you so much to the Hastings Center for partnering with us to bring this bioethics with Bigger Impact series to life online and to all of our sponsoring institutions who are getting the word out. So the Institute for Philosophy and Public Policy, the Vanderbilt Center for Biomedical Ethics and Society, the Harvard Center for Bioethics and the Center for Public Engagement with Science at the University of Cincinnati. On his YouTube page, you will also be able to find a recording of this session, or you may be watching it there by the time you see this, right? So today was the second part of a three part series. Stay tuned for more information about the final session on climate change and environmental ethics and bioethics. That’s going to come up this spring. We very much hope to see you there. And thank you again for joining us today.

Elizabeth Lanphier Thank you.

Danielle Pacia Thank you all for attending.

Danielle Pacia As mentioned.

Danielle Pacia A recording of.

Danielle Pacia This webinar.

Danielle Pacia Will be.

Danielle Pacia Available later today on the Hastings.

Danielle Pacia Center.

Danielle Pacia Website.

unpackingneglectedfactorswebinar.mov

Elizabeth Lanphier Want to welcome you all here today. We’re going to be starting in just one minute as people filter in. And I want to again welcome you to today’s second installment of Bioethics with Bigger Impact. I’m Elizabeth Lanphier. I’m a coeditor of a symposium in Perspectives in Biology and Medicine, along with Larry Churchill on the translational Work of Bioethics. And this presentation is in partnership with Perspectives in Biology and Medicine and the Hastings Center. And I want to let you know that our presenters will be visible today, but the audience and participants will not be. You will have an opportunity to direct questions in the Q&A throughout the talk. So please, as your questions arise, don’t hesitate to raise them and we will have a recording of the session later today on the Hastings Center website as well as later on the Center for Public Engagement with Science’s YouTube page.

So the next session is to preview will be our third session in the Bioethics and Bigger Impact series later this spring. And it will be on environment and climate ethics and bioethics’ role. So although I just want to mention really briefly what other things we get going that the entire issue of the translational work on bioethics and perspectives in biology and medicine is currently freely accessible on the project news website. So I really encourage you to check out the articles by today’s authors as well as all of the work in that symposium after the session.

So it’s my great pleasure to introduce our moderator for today, Dr. Jennifer James, whose expertise as a qualitative researcher and black feminist scholar, researching at the intersection of race, gender and health is really the perfect person to help us synthesize today’s topics about transformative justice and social determinants of health. Dr. James is an assistant professor in the Institute of Health and Aging, the Department of Social and Behavioral Sciences and the Bioethics Program at the University of California, San Francisco. She uses community engaged research and an intersectional framework to explore ethical issues related to experiences of illness, patient provider relationships and resistance and resilience in biomedicine. Dr. James is a true leader in bioethics. As a current Greenwald scholar and an elected member of the Board of Directors of the American Society for Bioethics and Humanities. So thank you so much for joining us today. And I’m going to turn the floor over to you.

Jennifer James Thank you so much for that lovely introduction and I’m so thrilled to see so many folks here today for this great conversation. If you haven’t had a chance to read this special issue and these papers, I really highly recommend and I’m so excited for our conversation. So are playing today. So we are going to hear from the authors of two papers. I’ll introduce them both of sort of each give a little bit of an overview. Then I get to offer you a brief comment and sort of raise some of my own questions, which is always the great thing about being invited into these spaces. And then we’re going to leave lots of time for audience Q&A and really have a conversation among all the speakers. So please make sure as we go, you’re putting questions in the Q&A that we can pose to our speakers and make sure have a great conversation.

So I will separate introducing our first two speakers, doctors Gina Kampuchea and Holly Bo. Dr. Kim Paglia is an assistant professor in the Department of Bioethics and Humanities at the University of Washington School of Medicine and a clinical ethics consultant for UW Medicine Ethics Consultation Service in Scholarship, Teaching and Practice. After Compendia translates ethical theories to clinical practice mediating or facilitating resolution of conflicts and values. Publication or publications Concentrate on critical theory and counteracting race based and gender based oppression in health care, as well as expanding the applications of relationality, empathy, epistemology, and feminist ethics to clinical ethics. Dr. Bowe is an assistant professor in the Department of Pediatrics at the University of Washington School of Medicine and Seattle’s Children’s Hospital in the Division of Pulmonary and Sleep Medicine and Bioethics in palliative care. He is also a clinical ethics consultant for Seattle Children’s Hospital for a scholarship focus on the practice of shared decision making, advancing health equity and improving comprehensive care for children with medical complexity. So please join me in welcoming Dr. is compelling and I’ll turn it over to you.

Gina Campelia Everybody, thanks so much for having us. We are really thrilled to be here, honored to be a part of this conversation. And we just wanted to start off by saying that our work on this project in particular is indebted to our coauthors as well. Alex and Tracy, as well as the insights of another cherished colleague, Maya Scott, and many of the other epic colleagues. We have health care professionals we work with as well as patients and families along the way.

I want us to start just with some of the motivations for this project. As feminist philosopher, a white ally working in clinical spaces, really been driven by deconstructing and reimagining relationships of power and oppression, especially in the clinical setting and in many ways, movements to dismantle oppression since the mid to late 20th century have not changed. The axes of oppression have not gone away. They’ve shifted maybe or become more hidden in certain ways. And so we just as we start the essay, we wanted to start today with this quote from Audre Lorde from an event in 1984 where she states, racism and homophobia are real conditions of all our lives. In this place and time. I urge each one of us here to reach down into that deep place of knowledge inside herself and touch that terror and loathing of any difference that lives there, even if the space it wears. After the Lord made that statement about three years before Bernard Lowe’s essay Behind Closed Doors Promises and Pitfalls of Ethics Committees, where he identifies ethics committees are concerned with the ethics committees relating to representation, groupthink, and ultimately judgments about fairness without explicitly discussing acts of oppression. But of course, the connection between the two can be readily made. And over the last several decades, critiques of mainstream bioethics from critical theory such as feminist theory, black bioethics, disability theories, queer theories continue to drive home significant issues of marginalization in representation in the field of bioethics generally. What we’re here to talk about today is how we experience these concerns acutely in our work in health care as health care ethics consultants feeling sometimes constrained by ethics, operating behind closed doors and reliance on standard ethical approaches that don’t always resonate with the patients and families who are connecting with our patients. And so I’ll turn it over now to my colleague, Dr. Vo, for a look at a particular case, just to see a little bit more in depth what we’re seeing in the clinical setting.

Holly Vo Thank you. As Gina mentioned, we both encountered political situations where it’s unclear how we should approach the ethical dilemma due to tensions between various ethical frameworks and values, and especially in contexts where one ethical framework may be privileged unfairly over another.

So here we present a case illustrates this tension. Vivienne is a 50 year old who was found down by a neighbor and now admitted for a severe anoxic brain injury following cardiac arrest. Criticism of the medical teams that she’s medically stable but unlikely to regain consciousness or breathe independently and is at risk for complications associated with prolonged ventilation. Vivian is very close to her family, and a family care conference was held to discuss next steps. Her husband and daughter prefer I do not attempt resuscitation code status, as Vivian has previously explicitly stated, not wanting to stay on a ventilator without hope of regaining consciousness. This is in contrast to her mother, who actually pleas for full code and additional and all interventions. A private family meeting was then held where the result being that they agreed to not attempt resuscitation, but that she remained the ventilator for another two months to assess next steps. Her husband admits that though Viviane likely wouldn’t want to remain on ventilation, he was not sure how she’d balance her own once with the obligation to her own family preferences and relationships, given its importance in her family’s value system.

So since it’s unclear how Vivian would have proceeded, there may be a few different approaches to at least consulted with weigh the different treatment options that this consultant and her team may choose to. One, prioritize respect for autonomy and thoughtfully, but firmly transitioned withdrawing life sustaining therapy in line with her reported expressed preference, possibly over the family’s objections. They may choose to act on the primacy of respect for autonomy, but incorporate the possibility that she would have valued her family’s preferences, possibly continuing at least for a time or as a third option here. Recognizing differences in the value based frameworks, guiding health care professionals and family, they may choose to center the family’s relational approach alongside individual autonomy centered approaches, and possibly continue at least for a time. So one caveat is how we know that this is a lot more complicated than it appears her in the slide. And there’s a lot more gray between these different approaches. However, when each of these paths push to its own logical conclusion, this is what we may end up getting. And though the second and third ties to the same medical action, the third allows us to actually center the family’s value system instead of centering our own and trying to mold theirs to fit into ours. When we consult in cases like this, sometimes we feel constrained in our ability to equally consider the second and third paths alongside respect for autonomy. As at this console ends, we’ve often relied on Beecham and children’s principles of biomedical ethics. And although Beecham and Childers discuss other ethical frameworks that include virtue and relational approaches, in our experience, the four principles of respect for autonomy, beneficence, non maleficent’s and justice have often been favored in the practice of bioethics in the US, and by centering the four principles and marginalizing other ethical approaches and moral frameworks, we risk perpetuating the oppression of our patients and communities that aren’t represented in the field of bioethics. For this case, it feels unjust that what is clearly the family’s central does was clear. The central value based reasoning for this family is an immediately and without advocacy fairly considered. And so in order to center equity and justice, we need to change our processes and elevate approaches that can center marginalized moral frameworks. Therefore, we propose an approach utilizing transformative justice that helps clinical ethicists meaningfully attend to diverse ethical approaches and analyze power imbalances to transform the last diagram to better represent what we’d like to do. We converted this one here that doesn’t appear to have a hierarchy or order of consideration associated with the pathways. And with that, I will go with Gina to go into this quote that we put that resonates that both of us very strongly.

Gina Campelia Thanks so much, Holly. So just as Holly said, we have felt like we needed a kind of framework to recognize and counteract depression in the consultation process specifically and one piece of this. Then the ethical reasoning itself. In other words, we really are hoping to work towards transforming our ethics practices so as to counteract or avoid a particular reality for some patients and communities that, as Foster puts, appear. As soon as the patient is admitted to the hospital, she is subject to an entirely different philosophical jurisdiction from the one to which she was subject outside the hospital door. Now this is just the start. But alongside our coauthors and many of our colleagues inside and outside of our institutions, we’ve begun to expand the standard framework that typically get employed in clinical ethics practices. And our goal here is not to abandon the four principles that some might reasonably argue for that, but rather what we’re trying to do is find a similarly practical tool or framework that draws standardly marginalized ethical perspectives to the center. We’ve organized this tool by approaches that we’ve seen to be relevant across stakeholders dealing or grappling with ethical conflicts in clinical settings, then offered key questions and tips for consideration. It’s important to note that it’s not meant to be a new list or an exhaustive list. These are very common ethical approaches that have been relied upon across societies and centuries to some extent or another. Many of these approaches are also present and before them in children. Those principles of biomedical ethics, though not always employed in clinical practice, as Holly mentioned earlier. The transformation occurs through expansion and inclusion and recognition of power and privilege throughout the. Worksheets are the tool. And so if we take, for instance, thinking about the case you’ve just heard about, consider the consequences consequential of them, as many of you know, considers benefits and harms in a broad sense. Typically in a clinical setting, we often focus on how different interventions will affect the particular patients in this case. So centering the patient’s well-being can simultaneously marginalize or obscure the consequences to the family or the patient as part of that family unit. So our tool demands that we ask how power and privilege affect what counts as relevance, as ethically salient consequences, and how those consequences are weighed against one another that Vivian and her family. We would want to be able to centralize the possible consequences to familial relationships with each possible pathway and integrate the moral priority or importance of family well-being in decision making and recognize how this family might be othered or marginalized for not using the same ethical language or prioritizing the same principles as we typically do in in US medical culture, such as the priority of priority or primacy of respect for autonomy. Ultimately, we want to be able to hold all these approaches together such that one doesn’t automatically outweigh the other simply because it’s the more dominant value in U.S. medical culture. So instead of one value or principle, such as respect for autonomy automatically trumping another such as familial well-being or familial autonomy, features of the contact will help us to weigh and consider the different values and ethical approaches equitably. And with that, I will and thank everybody again and I turn it over so we can prepare for the conversation.

Jennifer James Thank you so much. That was wonderful. I yeah, I so appreciate it. And any time anyone said to Badger Lord, you’ve got me hooked instantly. So that was a great talk. So just a reminder to everyone to please put questions in the Q&A. We’re sort of saving all of our discussion for the end. But as questions come up, please put them in the Q&A so we can get to them.

And I will introduce our next speaker. We’ll turn it over next to Dr. Gayle Henderson. Dr. Henderson is a professor of social medicine in the School of Medicine at the University of North Carolina at Chapel Hill. A medical sociologist with training in public health. Her research is focused on ethics issues in clinical trial decision making, race, ethnicity and genomic research and preventative genomics screening. She was department chair from 2009 to 2016, director of the USC Center for Genomics and Society from 2007 to 2019 and member of the National Human Genome Research Institute Advisory Council from 2016 to 2019. The most recent publication with Nancy Kang and Larry Churchill is bioethics Re-envisioned a Path towards Health Justice. So please join me in welcoming Dr. Henderson.

Gail Henderson Jen, thank you so much. And thank you to Larry and Elizabeth for this opportunity to join in and talk for briefly about sort of the other side of the coin, which is sort of much more macro level issues and justice. And I really appreciated Holly and Gina’s talk, and I’ll refer to it a couple of times, so I’ll just share my slides. Okay, so. What? How I’ve titled this talk Looking Upstream for Justice. And as as you know, the social scientists working with bioethicists in an interdisciplinary department at that university in North Carolina. So I bring a somewhat different lens to this. But my long time working with colleagues, I think, and this recent book that we’ve published, I hope, gives me some perspective on making recommendations. So all of you know that we have major justice movements in the United States which are pushing a new vision, protesting social injustices, pushing for a new vision of equity. This is hardly hardly bears emphasizing. It’s been in our media, it’s been on our in our literature, the webinars. It’s really everywhere. So and before we started, I asked Jim. Well, what what could we what could we add what in this in this webinar? Could we possibly add to this really amazing effort that has gone into considering racism, sexism, etc.? And what essentially what what I’d like to do is, is cover briefly what what we have recommended and this is Nancy King and Larry Churchill, and I recommended in this new book of how bioethics might fit into this broad landscape. And we argued that bioethics needs an expanded moral vision. The field must embrace a broader and more meaningful view of justice, principally by incorporating the tools and the insights of social sciences, epidemiology and public health, and work together to understand the ethical implications. And we began this work which culminated in this publication in 2020 and are painfully aware of the many articles that have and studies that emerged since then, but still feel that the thesis of our book is worth reiterating, and that is that the work about the bioethics field has been largely captured by the concerns of health care institutions, focusing on dilemmas raised in doctor, patient and investigator participant relationships. By newly emerging technologies informed consent in other slices of time problems of life ethics while paying less attention to upstream structural injustices and their profound consequences for the health and well-being of individuals and communities. I’ve called. And we’re we’re acutely aware of the fact that many bioethicists have focused on justice. But we argue that justice, autonomy and beneficence in my life and sentence are essential. Aspects of Bioethicist toolkit. Justice should be also. So how do we interrogate justice? And health justice. Gene and Holly’s work features contextualizing interactions. Within the hospital where many clinical epistemic dilemmas I’m so sorry to take place. And listening to narratives told by patients and families. Offering a new ethical framework, and we support this approach wholeheartedly. But we also tend to help justice upstream outside the hospital. Considering the structural injustices that create despair, disparities and ideas about ameliorating injustices through continued engagement. And I’m going to now turn to just a few of what I think your kind of take home messages or important issues in epidemiology that are that are fraught. Fraught with ethical implications. On the first. It’s looking historically at the three eras in epidemiology. And here the recent so-called discovery of of structural and social determinants of health. It’s really far from new. Over 150 years ago without understanding the mechanisms of disease. Medical and political activists like Rudolf Virchow and Friedrich Engels identified poverty. As the essential predictor of morbidity and mortality. But this knowledge was eclipsed by the germ theory of disease, identifying one cause and one outcome. Which prevention and treatment strategies will be applied. So there is happy news for people who is saddened by the miasma theory of disease conservation. And it was powerful, a powerful theory of disease, personality. And then since that time, even into all parts of the 20th century and beyond, advances in statistics and epidemiology made it possible to measure many individual and community level factors often identify risk factors for a condition. Without the biomedical mechanism being understood, it’s a so-called black box epidemiology. And for that, you just have to think of this famous study of smoking in lung cancer, which identified smoking as a risk factor and powerful receptors, but without really understanding the mechanism. So. What what happened during this time period as as much more sophisticated models of disease causality were were invented. There occurred something that has been called the epidemiology wars. Social epidemiology focused on societal determinants of health. Risk factor. Epidemiology focuses on behaviors and exposures. Molecular epidemiology focused on biological mechanism. But these are not value neutral. If one focuses on the proximate or very nearby factors that lead to disease, one tends to blame those afflicted. Focusing on distal factors shifts to sexual structural conditions. And I was interested at that at Holly Poly and Janice use of the trans. Power. And because Nancy Krieger reminds us that power is implicated in unequal systems structuring exposures. So in the context of much broader kinds of studies of risk factors. We can’t just assume it’s value neutral. And I want to mention one of my really one of my hero epidemiologists, Jeffrey Rosen, who wrote about. How upstream population level factors should be considered. Following social theorist Emile Durkheim from the prior century who observed, okay, I may have this. Yep. A little on this. And he observed that society wasn’t just comprised of individual actors, but society was an entity in itself. And grows in sick individuals and sick populations. Explore how characteristics and populations in which individuals live can be really different from characteristics of those individuals. And you can’t take social facts and translate them to individual level factors. They’re not the same necessarily. You just have to think about what’s what. Does living in a high unemployment area mean for individuals who are employed or not employed? It’s quite different. Those without jobs are exposed. Those with jobs are unexposed. But at a societal level, living in a high unemployment area has adverse effects on those groups. And I’m I’m talking about these. To give you a sense of the complications and the nuances that would begin to be articulated, not just this model that you can see on the right where. We have a lot of different factors, multi level, you know, macro Mizo individual level factors that are affecting individual and population health. But it’s it began to be understood that it was so much more complicated than that. Hey, just a couple more. Actually, just one more, one more data side. And that is this was just one of my other favorite concepts, and that is. Fundamental causes. Now, initially our Bruce Bruce Lincoln joke, Fallon argued back in the late 1980s and nineties that Penn’s socio economic status. And the fundamental cause. What does that mean? It means that. Their impact persists over time, despite really radical changes in diseases, risks and interventions that happen to produce to reproduce them at any given time. So. Individuals. So individuals. Can have negative health outcomes just based upon their socioeconomic status and not not related to this intervening factors. And and like socioeconomic status, race in the United States has an enduring connection to health and mortality as well. And. Williams, Lincoln feline and many others have have identified identified. Racism as a fundamental cause of disease. So in other words, in the same way. Racism that is experienced by individuals no matter what the intervening variables are, is. It is a cause of poor health. And I also want to note that that these are individual these initially were individual level. Activist. But lately, and most of you are very well aware this that research has coined the term structural to identify institutional and societal level factors that are that are similarly fundamental to analyzing disparities. And I listed a couple of authors there, but. Importantly, and I think Jen, in her work on intersectionality, doesn’t need to be reminded of this. But importantly, at the at around the same time, sorry, around the same time, Kimberlé Crenshaw, a lawyer who is developing a court case for African-American women, realized that it wasn’t just their being African American or that they were that they were women that produced discrimination. But it was the intersection of both. And just as as with the fundamental causes, this intersectionality now people have have started to think about structural intersectionality. So we looked at at the level of, for example, states trying to understand how structural intersectionality might affect health. So with that, I just leave you with these kinds of questions, like if you interrogate empirical results in disparities research, what would be the the ways that collaborating with. People like me with social epidemiologists and others. What what what are the kinds of questions that that should be asked of collaborations? Well, what justice implications are inherent in the empirical approach presented? And those were the examples, very brief examples I provided in how our individual and societal level variables presented. How is the structure of society identified and analyzed as a fundamental cause and disparities? And there are different dimensions of racism being measured, including structural racism. All of these have an impact on validity, usefulness and possible intervention programs. And my there our goal, Nancy and Larry and I, in putting together the book, is to make an argument for collaboration between bioethics and social epi and other other social science and public health fields, because it’s important to sort these ethical implications together. So thank you very much. So sorry for my cost. I tried. Okay.

Jennifer James It was barely noticeable. Don’t worry. Oh, thank you so much, Dr. Henderson, for that. That great presentation and overview. Gosh, I think you raise such important questions, and I wanted to sort of continue to invite people to put questions in the Q&A, but also if folks have answers or insights or additional questions from those questions, I think those are great things to raise to our discussion. So before we get into the Q&A, into the session, I get to take take the prerogative to raise some of my additional questions first.

So I’ll just reflect for a few minutes on these two presentations and the two papers that upon which they were based. So, you know, I’m just really grateful to be in this conversation with with these amazing these amazing researchers and ethicists and speakers today. And I know I’m not alone in reflecting on some of what Dr. Henderson spoke about on that. 35 months ago now, which seems wild. You know, my life and work changed in really profound ways for all of us, right? The COVID 19 pandemic and the racial justice movement drew much needed attention on racial violence in this country in 2020. And it rocked many of us to our cause. There was immense pain and trauma across many communities, trauma that is continuing constantly as we are seeing in the media. And what I think has been so profound for me is the way that health, medicine and bioethics began for the first time or the first time in a long time to really take seriously social oppression. As a medical sociologist who’s been studying and thinking about racism and intersectionality for many years, it’s been a bit of a feeling of like, welcome to the party. It’s kind of awful here, but there’s some really excellent books I can recommend to try to understand it better. And as someone in bioethics, I felt really strongly that we must take this moment and make sure we’re working towards doing bioethics differently. Right. We’re thinking today about bioethics with a bigger impact. And what’s fantastic about these two papers is I think they are allowing us to think about bioethics and bioethicist and how they operate on many levels, sort of thinking on the micro MSL and macro level, I think it’s important to think about how we intervene to do things with a bigger impact. But perhaps more importantly, how do we make sure that as a field we’re mitigating harm that we as bioethicists can do and have done so doctors can? Paglia and Beau began their piece by asserting that clinical ethics consultants bear witness to the harm of intersecting axes of oppression. And I challenge this a little bit slightly. I think ethicists witness harms of oppression every day, but I think the field has not done nearly enough to bear witness that is to make testimony of these harms. And we certainly have not led the charge of speaking out against them. The authors argue that the four principles have failed to address oppression and they assert that while they have been adopted in the use of our principles, have been adopted in the US for their depth, complexity and applicability, they also align with, quote, Eurocentric priorities of impartiality, universality and liberal individualism. And I think that speaks to a few. But I’ll point to one sort of central problem in the field. Bioethics still has a problem of privileging impartiality, and this is both concerning in the case of questioning the role of those with with experience being leading voices within the field discussions that remain ongoing. There is a recent job issue that wrestled with this, and it means that bioethics, I think, still often shies away from the political. The truth of race as a social construction that Dr. Henderson spoke at two and racism as a fundamental driver of health disparities is not new. It’s been well-established in the social science literature since the late 1900s, and I love saying it that way because it makes it sound even more old timey, like the late 1900s, but yet until 2020 discussions of racism. I think we’re still quite marginalized in in health, in medicine and in bioethics and understanding of racism and intersectional oppression and their links to health outcomes. I think many of the things that were cited here today are greatly split about that should be absolutely mandatory within our field. I think to study or intervene on health without this knowledge should be considered tantamount to some sort of bioethical malpractice if such a thing exists. The conversations we need to be having are the ones raised in these discussions, not are these things real or do they need to be considered within bioethics? But how do we operationalize them? Over the last few years, we’ve seen many calls for. Yes, please. Let’s talk about racism as important. How do we move beyond that to think about how we operationalize these concepts and actually intervene? Dr. Henderson raised the question in her piece, and FDI trainings will lead to meaningful change, adding, This is a really important question and one that shows my deep cynicism because I kind of think no deal has never been about structural and institutional change. Racism is embedded in our system so deeply. We need to find new tools and bigger ways to address it. And I think doctors can tell you and will offer a new model for doing this through transformative justice. How do we think about transforming our systems and our tools to to in the pursuit of justice? This is the way to operationalize this work on the micro-level in the context of clinical ethics in the patient provider relationship. And I think there’s an important reminder that ethics can’t stop at the clinic doors, right? We can’t just be content to bear witness to it too, to think through the harms of intersectional oppression we see in the clinic. And Dr. Henderson reminds us to look at the social determinants of health. I argue that racism as a structural determinant of health, right? We can’t ever fully address all the social determinants of health like housing, food, education, transportation, access, health care, and on and on. If we don’t intervene to address racism and this makes racism a key bioethics issue, we have a collective moral responsibility to intervene on structural and societal levels. We must consider how to have not just a bioethics, but perhaps a bio politics that’s sometimes within our discipline the need to intervene on systems of power. Dr. Henderson just mentioned lifeboat lifeboat effects. I think this is such an apt metaphor. I think we both need to see if we can stop the stream or build a dam or some other metaphorical thing we do with water somewhere. But I also think we need to think about if and how. There are places where bioethics is adding more water either to the lifeboat itself or to that river, or that it’s rushing down. So I want to being back out in for a second. So from the macro, I just sort of really think about the message. I think we have to remember that health care isn’t only the site of the downstream effects of racism, but a site of the perpetuation of harm itself, right? It’s a place where racism is created, it’s reified, it’s perpetuated every day. Those of us who work within hospitals and academic medical centers must access health. How are we addressing the racist harms perpetuated by our institutions? And so I’ll offer a few examples, I think, through, you know, on which families, as Child Protective Services called at your institution, which departments have security or police stationed, and who are the people who are seeking care there? My cats here. She has a really strong feelings about racism in medicine where a patient comes in shackled. Is it the policy of the institution to have the shackles removed? What type of language is used in medical records to indicate when someone is choosing not to follow the advice of their provider? And is that different across different types of patients based on how or why they’re declining care? What are patient experiences at birth and what are the birth outcomes that your institutions do? Residents of color feel supported by the institution? What about the non-clinical staff? How do they deal with in this environment? And I think, you know, sort of what I think about his health care should be a fundamental right in this country. I think many of us think that it’s not right to be. But what’s really concerning at a point where we can really intervene is the way that health and health care end up being the site of violence, oppression and harm for many. So what’s the role of bioethics? Are we seeking to protect the systems and institutions that perpetuate harm or to transform them to better serve our patients? Are we seeking to uphold power or center and engage community instead as a way of dissenter in that power? So my question sort of to all of you, everyone here is how can bioethics be a leading voice in this conversation? What is our impact on these systems of oppression? Are we perpetuating them or being be able to intervene? So those are all really big and slightly rhetorical question so that they way to our Q&A, I’ll invite our panelists to join back on screen and ask something more concretely, maybe slightly, maybe. I mean, it maybe it’s not completely, but I think of it a little bit. So in thinking about social oppression, how do you think bioethics falls along the spectrum of intervening or causing harm? And what are the ways that we can or should intervene on the harms and oppression caused by our health care institutions? Look, anybody wants to jump in.

Gina Campelia I just want to thank you so much. And I thought just as well, Chad, that your comments are so just acutely on point and really resonate with me and the work that we’ve been doing as ethics consultants with many of our colleagues at our institutions. I think that thinking about interventions at all of those levels is critical. And while in some ways what we were talking about today is, is on a micro level, it intersects with that level in many ways, right? Thinking about the makeup of your ethics committee, the representation among the ethics consultants and our practices. Our practices. Right. So part of the work developing the tool is to say, look, we’re relying on Eurocentric bureaucrats strands and values in U.S. medicine that don’t always resonate and actually marginalize and other value systems within the country. And and and so finding ways to dismantle that, the the aspects of white supremacy that come through that. Right. So the impartiality you talk about and the thinking that there is an objectivity here as opposed to subjectivity that’s imposed to ourselves as ethics consultants in some ways. And and so I think that’s something that Colin and I and our coauthors and other colleagues, other institutions have been working on knowing. And I think a lot of ethics consultants struggle with knowing that is the case, and then also not having alternative frameworks or practices to rely on. And so that the work we’re doing is we’re trying this first step down that down that road. So many people have have talked about these issues. And even even though that discussion is often marginalized in mainstream bioethics, there’s been plenty of work on that point. It’s there at our fingertips. The question now is how do we integrate it not just in how we interact with specific patients and colleagues, but also in our general practices that are guiding our committees and our consultation processes? How do we advocate for changes such as having not just an ethics consultation service, but an equity consultation service that can operate together in unison? And so and so those are some of the things we’ve been thinking about.

Holly Vo I’ll say to add on to it, Gina’s saying, which is very much what I was thinking as well, is that we really work on within our ethics, our ethics console services. We have all these frameworks that we have learned and we’ve kind of dabbling. But then there’s like main dominant ones that we work with, which is from our experience is like the four principles. And I think that one of the goals for setting up this new approach is to also allow different questions that ethicists can ask themselves and related to each particular patient. So that’s more of a systematic way of approaching it. It’s not that like I know all these frameworks I get to the bedside, yet I kind of like default to what has been practice or what I know is more commonly practice. But then using a systematic questioning approach to ask for each actual intervention or I’m start actually in consultation can help bring in the issues of racism, white supremacy and anti-blackness in a way that perhaps may be overlooked or not as present and easy to integrate into our current systems.

Jennifer James It’s super interesting. And just as a follow up to that, I think there was a question raised in the Q&A about are there other countries or other models we should be looking to for guidance on ethical practices that aren’t so centered on autonomy, that aren’t so centered. The ways that are sort of, as you mentioned, are Eurocentric approach to care. Who do you sort of look for as examples or should we be.

Gina Campelia Looking for towards its examples? It’s an interesting question because because those value systems are in the U.S., too. Right. And so it’s not like we have to look internationally to find value systems that are grounded in worldviews, that are marginalized in the U.S. and even originate in the land and territory that we now occupy. And so that I think it’s a really important question. Right? Who do we look to? Ideally, a lot greater diversity of values. That’s the key. I think that we try to draw into that tool is the analysis of power. So which value systems are marginalized? Othered, oppressor. In some ways, regardless of where they’re coming from or originating or what worldviews they rely on or what value systems great. And but to some extent, really acknowledging the dominant value systems originated in a Europe Christian Eurocentric model world view then and and that that that’s not the only worldview that lives and breathes in the U.S. And so I think that that is part of the work that we’re trying to do, is it’s that combination of recognizing, looking around a fair here that it’s not like we have to go outside the U.S. to find a diversity of worldviews and value systems that arise from those.

Gail Henderson So and I just wanted to say a couple of things in response to your really excellent discussion. One is that social epidemiology also and other kinds of social science disciplines always have problems with impartiality. And and those who step out of this bounds, like Nancy Kryger at Harvard, are. Not necess had not necessarily been. The norm, although the work that I mean, it’s very hard not to want to cite her work because she does talk about. The ways that power and privilege structure, exposures and those can be translated into what now people are talking about with structural racism, structural social conditions, or structural social institutions that are structuring according to not just race but class and other aspects of marginalizing people. So so that’s something that I think people I think it’s it’s a kind of false. My first idea that that that the methods and I’m sorry that that the that that that epidemiology itself is going to give us the truth. And in fact. No, not now. Not hardly. But what it does, I think, increasingly is give us tools to problematize and really attend to the ways that measurement may be structuring the kinds of answers we’re getting, the biases that are inherent in almost everything we do. And and and I think that kind of empirical approach is bereft without an ethical or bioethical sort of partnership that to which we can say, well, well, what are these things that that we’ve learned data wise and what’s especially what’s missing, because a lot was missing until recently. And that makes me want to ask sort of back to you, Jen, and to the others that the last three years and the the ways that racism has been not only uplifted as a as a theme, as a social movement to try to counter it, etc., but also as as people who are really trying to understand how to measure this and how to demonstrate empirically how how toxic it is for health and for other kinds of outcomes. So so it feels to me like and I guess I’m also coming off of watching the 1619 project on Netflix. I have to just raise that because I’m so profoundly impacted. Coming from UMC, you can understand my sense of loss there that that we’ve got a really different articulation of our history of what’s happening both on a micro level as as Hannah-Jones talks about her own family and on a macro level as she talks about the history and some of the, you know, horrific events that dealt with slavery and the aftermath of slavery. So so I feel we’re in a different world now. And I would like to think that we’re in a world where we can just leap forward and and make big progress on addressing what now we have data and we have concepts and and frameworks, as Jane and Holly put forward, to really reconsider what it is that we’re that we’re doing and understanding. So I’m sure I had something to say, but I forgot.

Jennifer James No, that’s great. And, you know, it links to something that I’ve been thinking about and also a question that that came through that I want to ask you. Yeah, I think you’re right. I think we’ve we’ve moved this conversation forward. I think many more people are comfortable sort of with both addressing our own sort of implicit bias, acknowledging and as well as that, like racism is a thing in our society. I think there’s a lot of acceptance of that within our field, like sort of that truth. But I’m still struggling with are we at a point where we feel like we can do things about that? Do we have the tools necessary? Do people feel like they have the ability to do it? And something I questioned in the chat was feeling like, how do we push for social and political change when the systems we work for might be hostile to that? Like our hospitals don’t necessarily want socialized medicine and they pay our salary. I’m thinking about colleagues working in Florida. We’re hearing like, you know, they’re like requesting everyone’s emails to see if they’re mentioning CRT. Like we live in a society that is very hostile to this. And, you know, I see, you know, how am I advocating for like changing systems that benefit me, right? Like the way that like now H has funded research have been quite racist over the years. Am I intervening on that or like right in the way it’s my own NIH. Grant’s right taking advantage. So I’m curious how you all think about both. Like, do bioethicists have any sort of special moral imperative to access beyond what an epidemiologist might have or any other field? And yeah, how do we work with in systems that might be hostile to that kind of change, knowing that, like there’s a lot of them out there, How do you all think about approaching this work? Assuming any of you are like, Well, this is how I overthrew my hospital system, let me tell you about it. But no, I mean, you know.

Gail Henderson I wanted I just wanted to quote Lisa Parker, who argued that bioethics can and should be a form of activism going beyond focus on the individual to taking up issues better analyzed through the lens of population based approaches, group identities and socially constructed vulnerabilities. So and the first part was what I wanted to ask ask you all about that, because I think you’re right. I think people who take activist stances within institutions don’t always fare well. But that’s what she thinks for bioethics is should should be.

Holly Vo In my years. I don’t have the answer. Your question, Jen or Gayle.

Holly Vo Those are very big and.

Holly Vo Wonderful things for us to be thinking about. But I think from what I’ve read and what I’ve learned, what I find in the field of bioethics is that we are AI, we are slower than other groups and other communities in our country to try to take a better and stronger activist voice. And so I think for me it’s a lot about learning from collaborators, it’s a lot about learning from groups who’ve been doing equity work, CRT groups who’ve been doing advocacy and finding ways that we can join and elevate voices that we know and recognize. Like you said, our moral imperative. Like we know that this is wrong, but we haven’t been great in the past many decades of actually doing something about it. And so I think that from the work that Jean and I’ve been working on, we take a lot from CRT colleagues who take a lot from theories out of other people that have written about how to do this and try to incorporate into a more systematic way of doing that. And so my small answer to your big question is I think we really need to start outside of politics and learn from others and do this better. I think we need to we can eventually when we learn how to.

Gina Campelia I think I agree. And I think another piece of this is sometimes they put a little bit too much under under the activism umbrella when really it’s just good health care practice or good ethics or. Right. So thinking about it as an example. It can there’s a lot of back and forth about whether and how to talk about racism in a hard. And so I think that as an example of how do I incorporate that into my ethics and what’s the best way to do that and when should I do that and so on. Knowing that that’s not an activist move, that’s just part of acknowledging ethically salient, clinically salient features of the context of that patient. And and so I think balancing both what is what is our role to really push change in the activist sense, whereas what’s just our very basic role to push change because what we’re doing is harming people in very real ways and it’s not actually effectively supporting health and well-being. And I think a lot of what Holly and I and our colleagues have been working on in our papers is is actually that first part. Somebody some people might categorize it as activism, but I don’t think it is. I think it’s really just trying to make sure that our ethical practices are just and right and leading to supporting and facilitating good patient care or counteracting ways that don’t. So I think that in addition to what people already already said, is something I think about as well.

Jennifer James Somehow already at the past, the point where I was supposed to wrap up the question. So instead of doing that, I just wanted to sort of actually pull out some things that folks raised in the question and just sort of throw them out there, because I think a lot of these are questions that none of us have the answer to, But we all need to be think about this about and some of them are ideas. And I just wanted to just go through a few of those and then turn it back over to Elizabeth to wrap it up. But first, just highlighting whose voices are in consultation. So people are asking, what do we do when we think about the white supremacy that’s embedded in our Ethics committee in consultation? I think that’s so important. People are asking me about how we advocate and think about narrative ethics and narrative medicine and the role of other professionals like chaplains and like social workers to intervene on multiple levels of the system. So I think thinking about who all is in the room for these conversations and how we expand that is important. People are asking what data we should be collecting to see how our institutions are doing. I think that is a phenomenal question that we should all be asking our institutions What do we already know and what can we know? And people are talking about something that I think is such an important point to end on is how we engage community. How are we inviting community into these decisions? How are we thinking about and privileging community? What I think gets to some of the topics of relational autonomy that came up and how do we make sure that we have broader representation in these decisions. So I think I do sort of want to end my thoughts with like, I think there’s a big conversations about what knowledge is privilege, what ways of doing this work is privilege, and how do we keep expanding that to thinking about the people who have been doing this and doing this well across many disciplines for many years. And so that’s where I’ll start. I’ll turn it back to you with that.

Elizabeth Lanphier Thank you all so, so much. I think that, as I’ve just said, many really extraordinary, deep, thoughtful questions that the audience is bringing up, I think demonstrate that the necessary gist of these conversations in order for bioethics to have a bigger impact in trying to shape what that impact will be. So I want to extend a huge thank you to Doctors compiler Evo Henderson for their essays and the Perspectives in Biology and Medicine Symposium and their presentations today. And to Dr. James for sharing your expertise and moderating our time together, which has been just fabulous. Larry Churchill and I are so grateful to Perspectives in Biology and Medicine for hosting the Symposium on the Translational Work in Bioethics and for Johns Hopkins University Press, who has currently made the entire issue freely accessible. So please go out and check out all of the essays. There’s no paywall. Share with all of your academic and nonacademic friends and colleagues will be accessible all month. And thank you so much to the Hastings Center for partnering with us to bring this bioethics with Bigger Impact series to life online and to all of our sponsoring institutions who are getting the word out. So the Institute for Philosophy and Public Policy, the Vanderbilt Center for Biomedical Ethics and Society, the Harvard Center for Bioethics and the Center for Public Engagement with Science at the University of Cincinnati. On his YouTube page, you will also be able to find a recording of this session, or you may be watching it there by the time you see this, right? So today was the second part of a three part series. Stay tuned for more information about the final session on climate change and environmental ethics and bioethics. That’s going to come up this spring. We very much hope to see you there. And thank you again for joining us today.

Elizabeth Lanphier Thank you.

Danielle Pacia Thank you all for attending.

Danielle Pacia As mentioned.

Danielle Pacia A recording of.

Danielle Pacia This webinar.

Danielle Pacia Will be.

Danielle Pacia Available later today on the Hastings.

Danielle Pacia Center.

Danielle Pacia Website.

Elizabeth Lanphier I want to welcome you to today’s second installment of Bioethics with Bigger Impact. I’m Elizabeth Lanphier. I’m a coeditor of a symposium in Perspectives in Biology and Medicine, along with Larry Churchill on the translational Work of Bioethics. And this presentation is in partnership with Perspectives in Biology and Medicine and the Hastings Center. And I want to let you know that our presenters will be visible today, but the audience and participants will not be. You will have an opportunity to direct questions in the Q&A throughout the talk. So please, as your questions arise, don’t hesitate to raise them and we will have a recording of the session later today on the Hastings Center website as well as later on the Center for Public Engagement with Science’s YouTube page.

So the next session is to preview will be our third session in the Bioethics and Bigger Impact series later this spring. And it will be on environment and climate ethics and bioethics’ role. So although I just want to mention really briefly what other things we get going that the entire issue of the translational work on bioethics and perspectives in biology and medicine is currently freely accessible on the project news website. So I really encourage you to check out the articles by today’s authors as well as all of the work in that symposium after the session.

So it’s my great pleasure to introduce our moderator for today, Dr. Jennifer James, whose expertise as a qualitative researcher and black feminist scholar, researching at the intersection of race, gender and health is really the perfect person to help us synthesize today’s topics about transformative justice and social determinants of health. Dr. James is an assistant professor in the Institute of Health and Aging, the Department of Social and Behavioral Sciences and the Bioethics Program at the University of California, San Francisco. She uses community engaged research and an intersectional framework to explore ethical issues related to experiences of illness, patient provider relationships and resistance and resilience in biomedicine. Dr. James is a true leader in bioethics. As a current Greenwald scholar and an elected member of the Board of Directors of the American Society for Bioethics and Humanities. So thank you so much for joining us today. And I’m going to turn the floor over to you.

Jennifer James Thank you so much for that lovely introduction and I’m so thrilled to see so many folks here today for this great conversation. If you haven’t had a chance to read this special issue and these papers, I really highly recommend and I’m so excited for our conversation. So are playing today. So we are going to hear from the authors of two papers. I’ll introduce them both of sort of each give a little bit of an overview. Then I get to offer you a brief comment and sort of raise some of my own questions, which is always the great thing about being invited into these spaces. And then we’re going to leave lots of time for audience Q&A and really have a conversation among all the speakers. So please make sure as we go, you’re putting questions in the Q&A that we can pose to our speakers and make sure have a great conversation.

So I will separate introducing our first two speakers, doctors Gina Kampuchea and Holly Bo. Dr. Kim Paglia is an assistant professor in the Department of Bioethics and Humanities at the University of Washington School of Medicine and a clinical ethics consultant for UW Medicine Ethics Consultation Service in Scholarship, Teaching and Practice. After Compendia translates ethical theories to clinical practice mediating or facilitating resolution of conflicts and values. Publication or publications Concentrate on critical theory and counteracting race based and gender based oppression in health care, as well as expanding the applications of relationality, empathy, epistemology, and feminist ethics to clinical ethics. Dr. Bowe is an assistant professor in the Department of Pediatrics at the University of Washington School of Medicine and Seattle’s Children’s Hospital in the Division of Pulmonary and Sleep Medicine and Bioethics in palliative care. He is also a clinical ethics consultant for Seattle Children’s Hospital for a scholarship focus on the practice of shared decision making, advancing health equity and improving comprehensive care for children with medical complexity. So please join me in welcoming Dr. is compelling and I’ll turn it over to you.

Gina Campelia Everybody, thanks so much for having us. We are really thrilled to be here, honored to be a part of this conversation. And we just wanted to start off by saying that our work on this project in particular is indebted to our coauthors as well. Alex and Tracy, as well as the insights of another cherished colleague, Maya Scott, and many of the other epic colleagues. We have health care professionals we work with as well as patients and families along the way.

I want us to start just with some of the motivations for this project. As feminist philosopher, a white ally working in clinical spaces, really been driven by deconstructing and reimagining relationships of power and oppression, especially in the clinical setting and in many ways, movements to dismantle oppression since the mid to late 20th century have not changed. The axes of oppression have not gone away. They’ve shifted maybe or become more hidden in certain ways. And so we just as we start the essay, we wanted to start today with this quote from Audre Lorde from an event in 1984 where she states, racism and homophobia are real conditions of all our lives. In this place and time. I urge each one of us here to reach down into that deep place of knowledge inside herself and touch that terror and loathing of any difference that lives there, even if the space it wears. After the Lord made that statement about three years before Bernard Lowe’s essay Behind Closed Doors Promises and Pitfalls of Ethics Committees, where he identifies ethics committees are concerned with the ethics committees relating to representation, groupthink, and ultimately judgments about fairness without explicitly discussing acts of oppression. But of course, the connection between the two can be readily made. And over the last several decades, critiques of mainstream bioethics from critical theory such as feminist theory, black bioethics, disability theories, queer theories continue to drive home significant issues of marginalization in representation in the field of bioethics generally. What we’re here to talk about today is how we experience these concerns acutely in our work in health care as health care ethics consultants feeling sometimes constrained by ethics, operating behind closed doors and reliance on standard ethical approaches that don’t always resonate with the patients and families who are connecting with our patients. And so I’ll turn it over now to my colleague, Dr. Vo, for a look at a particular case, just to see a little bit more in depth what we’re seeing in the clinical setting.

Holly Vo Thank you. As Gina mentioned, we both encountered political situations where it’s unclear how we should approach the ethical dilemma due to tensions between various ethical frameworks and values, and especially in contexts where one ethical framework may be privileged unfairly over another.

So here we present a case illustrates this tension. Vivienne is a 50 year old who was found down by a neighbor and now admitted for a severe anoxic brain injury following cardiac arrest. Criticism of the medical teams that she’s medically stable but unlikely to regain consciousness or breathe independently and is at risk for complications associated with prolonged ventilation. Vivian is very close to her family, and a family care conference was held to discuss next steps. Her husband and daughter prefer I do not attempt resuscitation code status, as Vivian has previously explicitly stated, not wanting to stay on a ventilator without hope of regaining consciousness. This is in contrast to her mother, who actually pleas for full code and additional and all interventions. A private family meeting was then held where the result being that they agreed to not attempt resuscitation, but that she remained the ventilator for another two months to assess next steps. Her husband admits that though Viviane likely wouldn’t want to remain on ventilation, he was not sure how she’d balance her own once with the obligation to her own family preferences and relationships, given its importance in her family’s value system.

So since it’s unclear how Vivian would have proceeded, there may be a few different approaches to at least consulted with weigh the different treatment options that this consultant and her team may choose to. One, prioritize respect for autonomy and thoughtfully, but firmly transitioned withdrawing life sustaining therapy in line with her reported expressed preference, possibly over the family’s objections. They may choose to act on the primacy of respect for autonomy, but incorporate the possibility that she would have valued her family’s preferences, possibly continuing at least for a time or as a third option here. Recognizing differences in the value based frameworks, guiding health care professionals and family, they may choose to center the family’s relational approach alongside individual autonomy centered approaches, and possibly continue at least for a time. So one caveat is how we know that this is a lot more complicated than it appears her in the slide. And there’s a lot more gray between these different approaches. However, when each of these paths push to its own logical conclusion, this is what we may end up getting. And though the second and third ties to the same medical action, the third allows us to actually center the family’s value system instead of centering our own and trying to mold theirs to fit into ours. When we consult in cases like this, sometimes we feel constrained in our ability to equally consider the second and third paths alongside respect for autonomy. As at this console ends, we’ve often relied on Beecham and children’s principles of biomedical ethics. And although Beecham and Childers discuss other ethical frameworks that include virtue and relational approaches, in our experience, the four principles of respect for autonomy, beneficence, non maleficent’s and justice have often been favored in the practice of bioethics in the US, and by centering the four principles and marginalizing other ethical approaches and moral frameworks, we risk perpetuating the oppression of our patients and communities that aren’t represented in the field of bioethics. For this case, it feels unjust that what is clearly the family’s central does was clear. The central value based reasoning for this family is an immediately and without advocacy fairly considered. And so in order to center equity and justice, we need to change our processes and elevate approaches that can center marginalized moral frameworks. Therefore, we propose an approach utilizing transformative justice that helps clinical ethicists meaningfully attend to diverse ethical approaches and analyze power imbalances to transform the last diagram to better represent what we’d like to do. We converted this one here that doesn’t appear to have a hierarchy or order of consideration associated with the pathways. And with that, I will go with Gina to go into this quote that we put that resonates that both of us very strongly.

Gina Campelia Thanks so much, Holly. So just as Holly said, we have felt like we needed a kind of framework to recognize and counteract depression in the consultation process specifically and one piece of this. Then the ethical reasoning itself. In other words, we really are hoping to work towards transforming our ethics practices so as to counteract or avoid a particular reality for some patients and communities that, as Foster puts, appear. As soon as the patient is admitted to the hospital, she is subject to an entirely different philosophical jurisdiction from the one to which she was subject outside the hospital door. Now this is just the start. But alongside our coauthors and many of our colleagues inside and outside of our institutions, we’ve begun to expand the standard framework that typically get employed in clinical ethics practices. And our goal here is not to abandon the four principles that some might reasonably argue for that, but rather what we’re trying to do is find a similarly practical tool or framework that draws standardly marginalized ethical perspectives to the center. We’ve organized this tool by approaches that we’ve seen to be relevant across stakeholders dealing or grappling with ethical conflicts in clinical settings, then offered key questions and tips for consideration. It’s important to note that it’s not meant to be a new list or an exhaustive list. These are very common ethical approaches that have been relied upon across societies and centuries to some extent or another. Many of these approaches are also present and before them in children. Those principles of biomedical ethics, though not always employed in clinical practice, as Holly mentioned earlier. The transformation occurs through expansion and inclusion and recognition of power and privilege throughout the. Worksheets are the tool. And so if we take, for instance, thinking about the case you’ve just heard about, consider the consequences consequential of them, as many of you know, considers benefits and harms in a broad sense. Typically in a clinical setting, we often focus on how different interventions will affect the particular patients in this case. So centering the patient’s well-being can simultaneously marginalize or obscure the consequences to the family or the patient as part of that family unit. So our tool demands that we ask how power and privilege affect what counts as relevance, as ethically salient consequences, and how those consequences are weighed against one another that Vivian and her family. We would want to be able to centralize the possible consequences to familial relationships with each possible pathway and integrate the moral priority or importance of family well-being in decision making and recognize how this family might be othered or marginalized for not using the same ethical language or prioritizing the same principles as we typically do in in US medical culture, such as the priority of priority or primacy of respect for autonomy. Ultimately, we want to be able to hold all these approaches together such that one doesn’t automatically outweigh the other simply because it’s the more dominant value in U.S. medical culture. So instead of one value or principle, such as respect for autonomy automatically trumping another such as familial well-being or familial autonomy, features of the contact will help us to weigh and consider the different values and ethical approaches equitably. And with that, I will and thank everybody again and I turn it over so we can prepare for the conversation.

Jennifer James Thank you so much. That was wonderful. I yeah, I so appreciate it. And any time anyone said to Badger Lord, you’ve got me hooked instantly. So that was a great talk. So just a reminder to everyone to please put questions in the Q&A. We’re sort of saving all of our discussion for the end. But as questions come up, please put them in the Q&A so we can get to them.

And I will introduce our next speaker. We’ll turn it over next to Dr. Gayle Henderson. Dr. Henderson is a professor of social medicine in the School of Medicine at the University of North Carolina at Chapel Hill. A medical sociologist with training in public health. Her research is focused on ethics issues in clinical trial decision making, race, ethnicity and genomic research and preventative genomics screening. She was department chair from 2009 to 2016, director of the USC Center for Genomics and Society from 2007 to 2019 and member of the National Human Genome Research Institute Advisory Council from 2016 to 2019. The most recent publication with Nancy Kang and Larry Churchill is bioethics Re-envisioned a Path towards Health Justice. So please join me in welcoming Dr. Henderson.

Gail Henderson Jen, thank you so much. And thank you to Larry and Elizabeth for this opportunity to join in and talk for briefly about sort of the other side of the coin, which is sort of much more macro level issues and justice. And I really appreciated Holly and Gina’s talk, and I’ll refer to it a couple of times, so I’ll just share my slides. Okay, so. What? How I’ve titled this talk Looking Upstream for Justice. And as as you know, the social scientists working with bioethicists in an interdisciplinary department at that university in North Carolina. So I bring a somewhat different lens to this. But my long time working with colleagues, I think, and this recent book that we’ve published, I hope, gives me some perspective on making recommendations. So all of you know that we have major justice movements in the United States which are pushing a new vision, protesting social injustices, pushing for a new vision of equity. This is hardly hardly bears emphasizing. It’s been in our media, it’s been on our in our literature, the webinars. It’s really everywhere. So and before we started, I asked Jim. Well, what what could we what could we add what in this in this webinar? Could we possibly add to this really amazing effort that has gone into considering racism, sexism, etc.? And what essentially what what I’d like to do is, is cover briefly what what we have recommended and this is Nancy King and Larry Churchill, and I recommended in this new book of how bioethics might fit into this broad landscape. And we argued that bioethics needs an expanded moral vision. The field must embrace a broader and more meaningful view of justice, principally by incorporating the tools and the insights of social sciences, epidemiology and public health, and work together to understand the ethical implications. And we began this work which culminated in this publication in 2020 and are painfully aware of the many articles that have and studies that emerged since then, but still feel that the thesis of our book is worth reiterating, and that is that the work about the bioethics field has been largely captured by the concerns of health care institutions, focusing on dilemmas raised in doctor, patient and investigator participant relationships. By newly emerging technologies informed consent in other slices of time problems of life ethics while paying less attention to upstream structural injustices and their profound consequences for the health and well-being of individuals and communities. I’ve called. And we’re we’re acutely aware of the fact that many bioethicists have focused on justice. But we argue that justice, autonomy and beneficence in my life and sentence are essential. Aspects of Bioethicist toolkit. Justice should be also. So how do we interrogate justice? And health justice. Gene and Holly’s work features contextualizing interactions. Within the hospital where many clinical epistemic dilemmas I’m so sorry to take place. And listening to narratives told by patients and families. Offering a new ethical framework, and we support this approach wholeheartedly. But we also tend to help justice upstream outside the hospital. Considering the structural injustices that create despair, disparities and ideas about ameliorating injustices through continued engagement. And I’m going to now turn to just a few of what I think your kind of take home messages or important issues in epidemiology that are that are fraught. Fraught with ethical implications. On the first. It’s looking historically at the three eras in epidemiology. And here the recent so-called discovery of of structural and social determinants of health. It’s really far from new. Over 150 years ago without understanding the mechanisms of disease. Medical and political activists like Rudolf Virchow and Friedrich Engels identified poverty. As the essential predictor of morbidity and mortality. But this knowledge was eclipsed by the germ theory of disease, identifying one cause and one outcome. Which prevention and treatment strategies will be applied. So there is happy news for people who is saddened by the miasma theory of disease conservation. And it was powerful, a powerful theory of disease, personality. And then since that time, even into all parts of the 20th century and beyond, advances in statistics and epidemiology made it possible to measure many individual and community level factors often identify risk factors for a condition. Without the biomedical mechanism being understood, it’s a so-called black box epidemiology. And for that, you just have to think of this famous study of smoking in lung cancer, which identified smoking as a risk factor and powerful receptors, but without really understanding the mechanism. So. What what happened during this time period as as much more sophisticated models of disease causality were were invented. There occurred something that has been called the epidemiology wars. Social epidemiology focused on societal determinants of health. Risk factor. Epidemiology focuses on behaviors and exposures. Molecular epidemiology focused on biological mechanism. But these are not value neutral. If one focuses on the proximate or very nearby factors that lead to disease, one tends to blame those afflicted. Focusing on distal factors shifts to sexual structural conditions. And I was interested at that at Holly Poly and Janice use of the trans. Power. And because Nancy Krieger reminds us that power is implicated in unequal systems structuring exposures. So in the context of much broader kinds of studies of risk factors. We can’t just assume it’s value neutral. And I want to mention one of my really one of my hero epidemiologists, Jeffrey Rosen, who wrote about. How upstream population level factors should be considered. Following social theorist Emile Durkheim from the prior century who observed, okay, I may have this. Yep. A little on this. And he observed that society wasn’t just comprised of individual actors, but society was an entity in itself. And grows in sick individuals and sick populations. Explore how characteristics and populations in which individuals live can be really different from characteristics of those individuals. And you can’t take social facts and translate them to individual level factors. They’re not the same necessarily. You just have to think about what’s what. Does living in a high unemployment area mean for individuals who are employed or not employed? It’s quite different. Those without jobs are exposed. Those with jobs are unexposed. But at a societal level, living in a high unemployment area has adverse effects on those groups. And I’m I’m talking about these. To give you a sense of the complications and the nuances that would begin to be articulated, not just this model that you can see on the right where. We have a lot of different factors, multi level, you know, macro Mizo individual level factors that are affecting individual and population health. But it’s it began to be understood that it was so much more complicated than that. Hey, just a couple more. Actually, just one more, one more data side. And that is this was just one of my other favorite concepts, and that is. Fundamental causes. Now, initially our Bruce Bruce Lincoln joke, Fallon argued back in the late 1980s and nineties that Penn’s socio economic status. And the fundamental cause. What does that mean? It means that. Their impact persists over time, despite really radical changes in diseases, risks and interventions that happen to produce to reproduce them at any given time. So. Individuals. So individuals. Can have negative health outcomes just based upon their socioeconomic status and not not related to this intervening factors. And and like socioeconomic status, race in the United States has an enduring connection to health and mortality as well. And. Williams, Lincoln feline and many others have have identified identified. Racism as a fundamental cause of disease. So in other words, in the same way. Racism that is experienced by individuals no matter what the intervening variables are, is. It is a cause of poor health. And I also want to note that that these are individual these initially were individual level. Activist. But lately, and most of you are very well aware this that research has coined the term structural to identify institutional and societal level factors that are that are similarly fundamental to analyzing disparities. And I listed a couple of authors there, but. Importantly, and I think Jen, in her work on intersectionality, doesn’t need to be reminded of this. But importantly, at the at around the same time, sorry, around the same time, Kimberlé Crenshaw, a lawyer who is developing a court case for African-American women, realized that it wasn’t just their being African American or that they were that they were women that produced discrimination. But it was the intersection of both. And just as as with the fundamental causes, this intersectionality now people have have started to think about structural intersectionality. So we looked at at the level of, for example, states trying to understand how structural intersectionality might affect health. So with that, I just leave you with these kinds of questions, like if you interrogate empirical results in disparities research, what would be the the ways that collaborating with. People like me with social epidemiologists and others. What what what are the kinds of questions that that should be asked of collaborations? Well, what justice implications are inherent in the empirical approach presented? And those were the examples, very brief examples I provided in how our individual and societal level variables presented. How is the structure of society identified and analyzed as a fundamental cause and disparities? And there are different dimensions of racism being measured, including structural racism. All of these have an impact on validity, usefulness and possible intervention programs. And my there our goal, Nancy and Larry and I, in putting together the book, is to make an argument for collaboration between bioethics and social epi and other other social science and public health fields, because it’s important to sort these ethical implications together. So thank you very much. So sorry for my cost. I tried. Okay.

Jennifer James It was barely noticeable. Don’t worry. Oh, thank you so much, Dr. Henderson, for that. That great presentation and overview. Gosh, I think you raise such important questions, and I wanted to sort of continue to invite people to put questions in the Q&A, but also if folks have answers or insights or additional questions from those questions, I think those are great things to raise to our discussion. So before we get into the Q&A, into the session, I get to take take the prerogative to raise some of my additional questions first.

So I’ll just reflect for a few minutes on these two presentations and the two papers that upon which they were based. So, you know, I’m just really grateful to be in this conversation with with these amazing these amazing researchers and ethicists and speakers today. And I know I’m not alone in reflecting on some of what Dr. Henderson spoke about on that. 35 months ago now, which seems wild. You know, my life and work changed in really profound ways for all of us, right? The COVID 19 pandemic and the racial justice movement drew much needed attention on racial violence in this country in 2020. And it rocked many of us to our cause. There was immense pain and trauma across many communities, trauma that is continuing constantly as we are seeing in the media. And what I think has been so profound for me is the way that health, medicine and bioethics began for the first time or the first time in a long time to really take seriously social oppression. As a medical sociologist who’s been studying and thinking about racism and intersectionality for many years, it’s been a bit of a feeling of like, welcome to the party. It’s kind of awful here, but there’s some really excellent books I can recommend to try to understand it better. And as someone in bioethics, I felt really strongly that we must take this moment and make sure we’re working towards doing bioethics differently. Right. We’re thinking today about bioethics with a bigger impact. And what’s fantastic about these two papers is I think they are allowing us to think about bioethics and bioethicist and how they operate on many levels, sort of thinking on the micro MSL and macro level, I think it’s important to think about how we intervene to do things with a bigger impact. But perhaps more importantly, how do we make sure that as a field we’re mitigating harm that we as bioethicists can do and have done so doctors can? Paglia and Beau began their piece by asserting that clinical ethics consultants bear witness to the harm of intersecting axes of oppression. And I challenge this a little bit slightly. I think ethicists witness harms of oppression every day, but I think the field has not done nearly enough to bear witness that is to make testimony of these harms. And we certainly have not led the charge of speaking out against them. The authors argue that the four principles have failed to address oppression and they assert that while they have been adopted in the use of our principles, have been adopted in the US for their depth, complexity and applicability, they also align with, quote, Eurocentric priorities of impartiality, universality and liberal individualism. And I think that speaks to a few. But I’ll point to one sort of central problem in the field. Bioethics still has a problem of privileging impartiality, and this is both concerning in the case of questioning the role of those with with experience being leading voices within the field discussions that remain ongoing. There is a recent job issue that wrestled with this, and it means that bioethics, I think, still often shies away from the political. The truth of race as a social construction that Dr. Henderson spoke at two and racism as a fundamental driver of health disparities is not new. It’s been well-established in the social science literature since the late 1900s, and I love saying it that way because it makes it sound even more old timey, like the late 1900s, but yet until 2020 discussions of racism. I think we’re still quite marginalized in in health, in medicine and in bioethics and understanding of racism and intersectional oppression and their links to health outcomes. I think many of the things that were cited here today are greatly split about that should be absolutely mandatory within our field. I think to study or intervene on health without this knowledge should be considered tantamount to some sort of bioethical malpractice if such a thing exists. The conversations we need to be having are the ones raised in these discussions, not are these things real or do they need to be considered within bioethics? But how do we operationalize them? Over the last few years, we’ve seen many calls for. Yes, please. Let’s talk about racism as important. How do we move beyond that to think about how we operationalize these concepts and actually intervene? Dr. Henderson raised the question in her piece, and FDI trainings will lead to meaningful change, adding, This is a really important question and one that shows my deep cynicism because I kind of think no deal has never been about structural and institutional change. Racism is embedded in our system so deeply. We need to find new tools and bigger ways to address it. And I think doctors can tell you and will offer a new model for doing this through transformative justice. How do we think about transforming our systems and our tools to to in the pursuit of justice? This is the way to operationalize this work on the micro-level in the context of clinical ethics in the patient provider relationship. And I think there’s an important reminder that ethics can’t stop at the clinic doors, right? We can’t just be content to bear witness to it too, to think through the harms of intersectional oppression we see in the clinic. And Dr. Henderson reminds us to look at the social determinants of health. I argue that racism as a structural determinant of health, right? We can’t ever fully address all the social determinants of health like housing, food, education, transportation, access, health care, and on and on. If we don’t intervene to address racism and this makes racism a key bioethics issue, we have a collective moral responsibility to intervene on structural and societal levels. We must consider how to have not just a bioethics, but perhaps a bio politics that’s sometimes within our discipline the need to intervene on systems of power. Dr. Henderson just mentioned lifeboat lifeboat effects. I think this is such an apt metaphor. I think we both need to see if we can stop the stream or build a dam or some other metaphorical thing we do with water somewhere. But I also think we need to think about if and how. There are places where bioethics is adding more water either to the lifeboat itself or to that river, or that it’s rushing down. So I want to being back out in for a second. So from the macro, I just sort of really think about the message. I think we have to remember that health care isn’t only the site of the downstream effects of racism, but a site of the perpetuation of harm itself, right? It’s a place where racism is created, it’s reified, it’s perpetuated every day. Those of us who work within hospitals and academic medical centers must access health. How are we addressing the racist harms perpetuated by our institutions? And so I’ll offer a few examples, I think, through, you know, on which families, as Child Protective Services called at your institution, which departments have security or police stationed, and who are the people who are seeking care there? My cats here. She has a really strong feelings about racism in medicine where a patient comes in shackled. Is it the policy of the institution to have the shackles removed? What type of language is used in medical records to indicate when someone is choosing not to follow the advice of their provider? And is that different across different types of patients based on how or why they’re declining care? What are patient experiences at birth and what are the birth outcomes that your institutions do? Residents of color feel supported by the institution? What about the non-clinical staff? How do they deal with in this environment? And I think, you know, sort of what I think about his health care should be a fundamental right in this country. I think many of us think that it’s not right to be. But what’s really concerning at a point where we can really intervene is the way that health and health care end up being the site of violence, oppression and harm for many. So what’s the role of bioethics? Are we seeking to protect the systems and institutions that perpetuate harm or to transform them to better serve our patients? Are we seeking to uphold power or center and engage community instead as a way of dissenter in that power? So my question sort of to all of you, everyone here is how can bioethics be a leading voice in this conversation? What is our impact on these systems of oppression? Are we perpetuating them or being be able to intervene? So those are all really big and slightly rhetorical question so that they way to our Q&A, I’ll invite our panelists to join back on screen and ask something more concretely, maybe slightly, maybe. I mean, it maybe it’s not completely, but I think of it a little bit. So in thinking about social oppression, how do you think bioethics falls along the spectrum of intervening or causing harm? And what are the ways that we can or should intervene on the harms and oppression caused by our health care institutions? Look, anybody wants to jump in.

Gina Campelia I just want to thank you so much. And I thought just as well, Chad, that your comments are so just acutely on point and really resonate with me and the work that we’ve been doing as ethics consultants with many of our colleagues at our institutions. I think that thinking about interventions at all of those levels is critical. And while in some ways what we were talking about today is, is on a micro level, it intersects with that level in many ways, right? Thinking about the makeup of your ethics committee, the representation among the ethics consultants and our practices. Our practices. Right. So part of the work developing the tool is to say, look, we’re relying on Eurocentric bureaucrats strands and values in U.S. medicine that don’t always resonate and actually marginalize and other value systems within the country. And and and so finding ways to dismantle that, the the aspects of white supremacy that come through that. Right. So the impartiality you talk about and the thinking that there is an objectivity here as opposed to subjectivity that’s imposed to ourselves as ethics consultants in some ways. And and so I think that’s something that Colin and I and our coauthors and other colleagues, other institutions have been working on knowing. And I think a lot of ethics consultants struggle with knowing that is the case, and then also not having alternative frameworks or practices to rely on. And so that the work we’re doing is we’re trying this first step down that down that road. So many people have have talked about these issues. And even even though that discussion is often marginalized in mainstream bioethics, there’s been plenty of work on that point. It’s there at our fingertips. The question now is how do we integrate it not just in how we interact with specific patients and colleagues, but also in our general practices that are guiding our committees and our consultation processes? How do we advocate for changes such as having not just an ethics consultation service, but an equity consultation service that can operate together in unison? And so and so those are some of the things we’ve been thinking about.

Holly Vo I’ll say to add on to it, Gina’s saying, which is very much what I was thinking as well, is that we really work on within our ethics, our ethics console services. We have all these frameworks that we have learned and we’ve kind of dabbling. But then there’s like main dominant ones that we work with, which is from our experience is like the four principles. And I think that one of the goals for setting up this new approach is to also allow different questions that ethicists can ask themselves and related to each particular patient. So that’s more of a systematic way of approaching it. It’s not that like I know all these frameworks I get to the bedside, yet I kind of like default to what has been practice or what I know is more commonly practice. But then using a systematic questioning approach to ask for each actual intervention or I’m start actually in consultation can help bring in the issues of racism, white supremacy and anti-blackness in a way that perhaps may be overlooked or not as present and easy to integrate into our current systems.

Jennifer James It’s super interesting. And just as a follow up to that, I think there was a question raised in the Q&A about are there other countries or other models we should be looking to for guidance on ethical practices that aren’t so centered on autonomy, that aren’t so centered. The ways that are sort of, as you mentioned, are Eurocentric approach to care. Who do you sort of look for as examples or should we be.

Gina Campelia Looking for towards its examples? It’s an interesting question because because those value systems are in the U.S., too. Right. And so it’s not like we have to look internationally to find value systems that are grounded in worldviews, that are marginalized in the U.S. and even originate in the land and territory that we now occupy. And so that I think it’s a really important question. Right? Who do we look to? Ideally, a lot greater diversity of values. That’s the key. I think that we try to draw into that tool is the analysis of power. So which value systems are marginalized? Othered, oppressor. In some ways, regardless of where they’re coming from or originating or what worldviews they rely on or what value systems great. And but to some extent, really acknowledging the dominant value systems originated in a Europe Christian Eurocentric model world view then and and that that that’s not the only worldview that lives and breathes in the U.S. And so I think that that is part of the work that we’re trying to do, is it’s that combination of recognizing, looking around a fair here that it’s not like we have to go outside the U.S. to find a diversity of worldviews and value systems that arise from those.

Gail Henderson So and I just wanted to say a couple of things in response to your really excellent discussion. One is that social epidemiology also and other kinds of social science disciplines always have problems with impartiality. And and those who step out of this bounds, like Nancy Kryger at Harvard, are. Not necess had not necessarily been. The norm, although the work that I mean, it’s very hard not to want to cite her work because she does talk about. The ways that power and privilege structure, exposures and those can be translated into what now people are talking about with structural racism, structural social conditions, or structural social institutions that are structuring according to not just race but class and other aspects of marginalizing people. So so that’s something that I think people I think it’s it’s a kind of false. My first idea that that that the methods and I’m sorry that that the that that that epidemiology itself is going to give us the truth. And in fact. No, not now. Not hardly. But what it does, I think, increasingly is give us tools to problematize and really attend to the ways that measurement may be structuring the kinds of answers we’re getting, the biases that are inherent in almost everything we do. And and and I think that kind of empirical approach is bereft without an ethical or bioethical sort of partnership that to which we can say, well, well, what are these things that that we’ve learned data wise and what’s especially what’s missing, because a lot was missing until recently. And that makes me want to ask sort of back to you, Jen, and to the others that the last three years and the the ways that racism has been not only uplifted as a as a theme, as a social movement to try to counter it, etc., but also as as people who are really trying to understand how to measure this and how to demonstrate empirically how how toxic it is for health and for other kinds of outcomes. So so it feels to me like and I guess I’m also coming off of watching the 1619 project on Netflix. I have to just raise that because I’m so profoundly impacted. Coming from UMC, you can understand my sense of loss there that that we’ve got a really different articulation of our history of what’s happening both on a micro level as as Hannah-Jones talks about her own family and on a macro level as she talks about the history and some of the, you know, horrific events that dealt with slavery and the aftermath of slavery. So so I feel we’re in a different world now. And I would like to think that we’re in a world where we can just leap forward and and make big progress on addressing what now we have data and we have concepts and and frameworks, as Jane and Holly put forward, to really reconsider what it is that we’re that we’re doing and understanding. So I’m sure I had something to say, but I forgot.

Jennifer James No, that’s great. And, you know, it links to something that I’ve been thinking about and also a question that that came through that I want to ask you. Yeah, I think you’re right. I think we’ve we’ve moved this conversation forward. I think many more people are comfortable sort of with both addressing our own sort of implicit bias, acknowledging and as well as that, like racism is a thing in our society. I think there’s a lot of acceptance of that within our field, like sort of that truth. But I’m still struggling with are we at a point where we feel like we can do things about that? Do we have the tools necessary? Do people feel like they have the ability to do it? And something I questioned in the chat was feeling like, how do we push for social and political change when the systems we work for might be hostile to that? Like our hospitals don’t necessarily want socialized medicine and they pay our salary. I’m thinking about colleagues working in Florida. We’re hearing like, you know, they’re like requesting everyone’s emails to see if they’re mentioning CRT. Like we live in a society that is very hostile to this. And, you know, I see, you know, how am I advocating for like changing systems that benefit me, right? Like the way that like now H has funded research have been quite racist over the years. Am I intervening on that or like right in the way it’s my own NIH. Grant’s right taking advantage. So I’m curious how you all think about both. Like, do bioethicists have any sort of special moral imperative to access beyond what an epidemiologist might have or any other field? And yeah, how do we work with in systems that might be hostile to that kind of change, knowing that, like there’s a lot of them out there, How do you all think about approaching this work? Assuming any of you are like, Well, this is how I overthrew my hospital system, let me tell you about it. But no, I mean, you know.

Gail Henderson I wanted I just wanted to quote Lisa Parker, who argued that bioethics can and should be a form of activism going beyond focus on the individual to taking up issues better analyzed through the lens of population based approaches, group identities and socially constructed vulnerabilities. So and the first part was what I wanted to ask ask you all about that, because I think you’re right. I think people who take activist stances within institutions don’t always fare well. But that’s what she thinks for bioethics is should should be.

Holly Vo In my years. I don’t have the answer. Your question, Jen or Gayle.

Holly Vo Those are very big and.

Holly Vo Wonderful things for us to be thinking about. But I think from what I’ve read and what I’ve learned, what I find in the field of bioethics is that we are AI, we are slower than other groups and other communities in our country to try to take a better and stronger activist voice. And so I think for me it’s a lot about learning from collaborators, it’s a lot about learning from groups who’ve been doing equity work, CRT groups who’ve been doing advocacy and finding ways that we can join and elevate voices that we know and recognize. Like you said, our moral imperative. Like we know that this is wrong, but we haven’t been great in the past many decades of actually doing something about it. And so I think that from the work that Jean and I’ve been working on, we take a lot from CRT colleagues who take a lot from theories out of other people that have written about how to do this and try to incorporate into a more systematic way of doing that. And so my small answer to your big question is I think we really need to start outside of politics and learn from others and do this better. I think we need to we can eventually when we learn how to.

Gina Campelia I think I agree. And I think another piece of this is sometimes they put a little bit too much under under the activism umbrella when really it’s just good health care practice or good ethics or. Right. So thinking about it as an example. It can there’s a lot of back and forth about whether and how to talk about racism in a hard. And so I think that as an example of how do I incorporate that into my ethics and what’s the best way to do that and when should I do that and so on. Knowing that that’s not an activist move, that’s just part of acknowledging ethically salient, clinically salient features of the context of that patient. And and so I think balancing both what is what is our role to really push change in the activist sense, whereas what’s just our very basic role to push change because what we’re doing is harming people in very real ways and it’s not actually effectively supporting health and well-being. And I think a lot of what Holly and I and our colleagues have been working on in our papers is is actually that first part. Somebody some people might categorize it as activism, but I don’t think it is. I think it’s really just trying to make sure that our ethical practices are just and right and leading to supporting and facilitating good patient care or counteracting ways that don’t. So I think that in addition to what people already already said, is something I think about as well.

Jennifer James Somehow already at the past, the point where I was supposed to wrap up the question. So instead of doing that, I just wanted to sort of actually pull out some things that folks raised in the question and just sort of throw them out there, because I think a lot of these are questions that none of us have the answer to, But we all need to be think about this about and some of them are ideas. And I just wanted to just go through a few of those and then turn it back over to Elizabeth to wrap it up. But first, just highlighting whose voices are in consultation. So people are asking, what do we do when we think about the white supremacy that’s embedded in our Ethics committee in consultation? I think that’s so important. People are asking me about how we advocate and think about narrative ethics and narrative medicine and the role of other professionals like chaplains and like social workers to intervene on multiple levels of the system. So I think thinking about who all is in the room for these conversations and how we expand that is important. People are asking what data we should be collecting to see how our institutions are doing. I think that is a phenomenal question that we should all be asking our institutions What do we already know and what can we know? And people are talking about something that I think is such an important point to end on is how we engage community. How are we inviting community into these decisions? How are we thinking about and privileging community? What I think gets to some of the topics of relational autonomy that came up and how do we make sure that we have broader representation in these decisions. So I think I do sort of want to end my thoughts with like, I think there’s a big conversations about what knowledge is privilege, what ways of doing this work is privilege, and how do we keep expanding that to thinking about the people who have been doing this and doing this well across many disciplines for many years. And so that’s where I’ll start. I’ll turn it back to you with that.

Elizabeth Lanphier Thank you all so, so much. I think that, as I’ve just said, many really extraordinary, deep, thoughtful questions that the audience is bringing up, I think demonstrate that the necessary gist of these conversations in order for bioethics to have a bigger impact in trying to shape what that impact will be. So I want to extend a huge thank you to Doctors compiler Evo Henderson for their essays and the Perspectives in Biology and Medicine Symposium and their presentations today. And to Dr. James for sharing your expertise and moderating our time together, which has been just fabulous. Larry Churchill and I are so grateful to Perspectives in Biology and Medicine for hosting the Symposium on the Translational Work in Bioethics and for Johns Hopkins University Press, who has currently made the entire issue freely accessible. So please go out and check out all of the essays. There’s no paywall. Share with all of your academic and nonacademic friends and colleagues will be accessible all month. And thank you so much to the Hastings Center for partnering with us to bring this bioethics with Bigger Impact series to life online and to all of our sponsoring institutions who are getting the word out. So the Institute for Philosophy and Public Policy, the Vanderbilt Center for Biomedical Ethics and Society, the Harvard Center for Bioethics and the Center for Public Engagement with Science at the University of Cincinnati. On his YouTube page, you will also be able to find a recording of this session, or you may be watching it there by the time you see this, right? So today was the second part of a three part series. Stay tuned for more information about the final session on climate change and environmental ethics and bioethics. That’s going to come up this spring. We very much hope to see you there. And thank you again for joining us today.

Elizabeth Lanphier Thank you.

Danielle Pacia Thank you all for attending.

Danielle Pacia As mentioned.

Danielle Pacia A recording of.

Danielle Pacia This webinar.

Danielle Pacia Will be.

Danielle Pacia Available later today on the Hastings.

Danielle Pacia Center.

Danielle Pacia Website.