Bioethics in the Margins Podcast: An Interview of the Interviewers

Today’s blog post features an interview with three bioethicists who are used to interviewing others on their podcast “Bioethics in the Margins" - Amelia Barwise, Liz Chuang, and Kirk Johnson. Read on for our interview with this trio to learn more about them and the podcast.

Hello Amelia, Kirk, and Liz! Over here on the IJFAB Blog we are huge supporters of your podcast, Bioethics in the Margins (BITM), as your mission focused on “highlighting marginalized voices and topics” aligns with feminist methods and approaches in bioethics. Thanks for joining us on the blog to tell us more about how this program came about, who is behind it, and what kinds of topics and people you are looking to host on the podcast in the future.

First, can you tell us briefly about your backgrounds in bioethics?

Amelia: I came to bioethics relatively late in my career. I got my medical degree in Trinity College Dublin and worked in the UK and Australia while completing a family medicine residency. Following completion of my training, I worked in Dublin for several years with underserved populations and refugees. In 2008 I moved to the US and over the years began to focus on research studying the impact of language barriers on decision making, care and patient outcomes. During my Clinical and Translational Masters and PhD I managed to connect with one of the faculty in the Biomedical Ethics Research Program who also studied health disparities. I embedded myself within the program as a Bioethics Scholar in Training and took several bioethics courses. I enjoyed the people, discussions and exposure to a new field of research and scholarship. My previous exposure to bioethics was minimal during medical school so I learned a lot! I now collaborate with several of the faculty on research projects, teach two bioethics courses in the graduate school, and regularly mentor students in bioethics. I cherish being part of the program and bioethics has now become a huge part of my academic life.

Liz: Like Amelia, I did not start out in Bioethics. I came to Montefiore Einstein in 2012 for palliative care fellowship after completing residencies in Internal Medicine at NYU and Public Health and Preventive Medicine at the NYC Department of Health and Mental Hygiene. My career has had a lot of breadth to it, but a constant focus has been on improving care for Black patients and their families. I grew up in Poughkeepsie, NY, where I attended majority-Black public schools. Witnessing disparities in educational opportunities was a foundational part of my personal and professional development. I came to the Bronx to serve a population I care deeply about and that is closely connected with the community I grew up in. Serendipitously, Montefiore’s palliative care program has always included the opportunity to complete an Advanced Certificate in Bioethics with the Montefiore Einstein Center for Bioethics. This is the program that Nancy Dubler founded more than 30 years ago, and I was truly lucky to have that opportunity before I even knew much about bioethics as a field. In 2015 I launched a career in research, investigating the role of clinician communication in disparities in end-of-life care. In 2018, I had a gap in funding and was looking for something else to do within the institution. Again, serendipitously, the Montefiore Einstein Center for Bioethics was looking for a part-time ethicist. I was hired by Tia Powell and trained by Adira Hulkower and I’ve been doing clinical ethics ever since. I found that it highlighted the parts of palliative care that I most enjoyed – communication – as well as appealing to my academic side. In addition, the patient- and family-centric mediation practice that was the core of Nancy Dubler’s legacy is a great foundation for building a bioethics program that is community-engaged and responsive to the needs of a diverse patient population. After Dr. Powell retired, I became the Director of the Center, which has been an amazing opportunity to shape the next chapter of the Center.

Kirk: My path into bioethics grew from the intersection of faith, racial justice, and concern for communities whose health needs are overlooked. I first studied religion and political science at Seton Hall University, then earned a Master of Divinity and a Doctorate in Medical Humanities at Drew University. Those disciplines taught me to examine not only what medicine can do, but also what it ought to do, whom it serves, and whose experiences are excluded from clinical decision-making. My early community-health work made those questions concrete. Through Health Outreach and Prevention Education, Healthy Families, Healthy Planet, and the American Heart Association, I worked with African American faith communities on prevention, maternal health, health literacy, blood-pressure awareness, and health disparities. These experiences showed me that illness is shaped not only by biology, but also by history, race, access, trust, public policy, and social conditions. During my doctoral training, I taught Medical and Healthcare Ethics and developed research focused on vulnerable populations, race and medicine, and bioethics. That work became central to my scholarship, including Medical Stigmata, which examines racialized medicine and theological liberation. I later taught bioethics, health ethics, and theology and medicine at Drew, Seton Hall, and QVersity, while also serving on Atlantic Health System’s Medical Bioethics Committee. I entered bioethics because it offered a way to unite my theological formation, community advocacy, and scholarship. It gave me the tools to challenge health inequities, examine the moral consequences of medical practices, and advocate for more humane, trustworthy, and just healthcare.

How did those interests in bioethics lead you to each other, and to creating the podcast?

We were all members of the American Society of Bioethics and Humanities (ASBH) Race affinity group. During the RACE AG meeting in December 2020, amid the pandemic, we brainstormed ideas to showcase a broader range of perspectives in bioethics and medical humanities, particularly of those who have been marginalized in mainstream bioethics discourse. One idea that emerged initially from Liz was to engage with stakeholders more directly through a podcast. We did an environmental scan of other bioethics podcasts, but no one seemed to be doing what we envisioned or proposed.

Soon several of us were meeting to plan the podcast but we all had very similar ideas of why we thought these topics-usually not considered part of bioethics should be discussed and shared with bioethicists. We spent a lot of time thinking about our mission and title-Bioethics in the Margins.

We still describe ourselves as a collaborative of bioethics scholars interested in creating a more inclusive space to explore topics relevant to bioethics and the medical humanities while advancing equity and social change/restitution. Although we found our shared interests through our membership in the American Society for Bioethics and Humanities Race Affinity Group, we are independent of ASBH and any other organization. The views expressed in the podcast are our own and views of the speakers and do not represent our employers, institutions, or professional societies.

We should also mention Dr. Nicolle Strand JD, PhD, now the Director of the Center for Health Justice and Bioethics at Temple University, Philadelphia who was a key founder of the podcast, original sound editor and the voice you hear in the intro and outro. Nicolle remains involved as an adviser but has stepped away from the monthly episodes.   

We did not have and still do not receive any funding, but Liz bought us some podcast equipment. We record the podcast using that equipment and a relatively affordable software to optimize the sound quality and ability to edit.

Can you tell us about what your goals are for the podcast – and have they evolved over time?

Our goals remain largely the same and we could also say we have probably underperformed and neglected some areas such as disability ethics and climate change that we planned to highlight. Although we have seen some more discussion of “marginalized” topics within bioethics and more widespread interest and acknowledgement that these topics deserve attention within bioethics there is a long way to go. But it is encouraging to see these issues being discussed more at conferences and meetings. ASBH supports these efforts including through the ASBH DEI webinars which highlight topics such as immigration, environmental justice and neurodiversity-topics that are also key for us. A couple of us are members of the committee that plans those webinars.

Our stated mission is as follows: Bioethics in the Margins aims to include topics, guests and audiences who are not always highlighted in mainstream bioethics discourse. We will focus on structural inequity, and the role bioethics can play in social change. We aim to move beyond traditional bioethics frameworks and intentionally draw on intersectionality, social justice, racial justice, disability ethics, women, LGBTQ ethics, and topics specific to Black, immigrant/refugee, Native American, Latinx populations.

We did a live podcast recording at the ASBH meeting in 2022 and received some feedback about topics of interest. Violence in its many forms, as a focus for bioethics was important to the audience members, so we have had several podcasts on different aspects of gun violence, excited delirium (which was actually our second podcast) as well as mental health within carceral settings. Issues of censorship have become increasingly important, so we invited a school librarian to speak about book bans and attacks on critical thinking.

While we have often discussed social determinants of health, we recently had a fantastic episode about commercial determinants of health with Dr. Nicholas Fredenberg. Many of our guests do not necessarily consider themselves bioethicists and they come from other disciplines.  We’ve also had several episodes, and several wonderful speakers talk about immigration including ICE detention, sanctuary churches, and health access policies  which have become increasingly pertinent in recent times.

We are always open to topics our listeners want to hear about but if they are mainstream bioethics topics such as AI or genomics, we want to try to use our BITM lens to highlight how these topics relate to social justice or health equity rather than just general bioethics concerns.

 We want our audience to be broad and could be anyone who has contact with healthcare, an interest in bioethics, students and anyone who has a passion for digging deeper into the issues we often hear about in the lay media. Bioethics and medical humanities professionals. Healthcare workers. People living with illness and disability. Caregivers. Policymakers and administrators.

What – if anything - has been surprising for you about hosting a bioethics podcast?

First, it has been such a pleasure working together. We had worked together and recorded 12 podcasts  for 14 months before finally meeting in person (at the ASBH annual conference in October 2022). So, a great surprise was that we could trust each other enough to put ourselves out there together in the public domain. It was a very smooth collaboration compared to many that take place with familiar colleagues in nearby offices on site! We understand each other’s responsibilities and strengths and can pivot when needed to share the workload. We are also very proud that our podcast is still going after over 5 ½ years. This is despite no funding and all of us being volunteers. At the start it was hard to imagine how long we would do this for, but now we can’t imagine not doing this.

Something we talk about as blog editors is how challenging it can be for truly international approaches to bioethics – sometimes global approaches can feel really in the “margins.” You’ve hosted a range of guests and topics that take up different perspectives. How are you thinking about what is in the “margins” of bioethics? In your view, are there things that used to be in the margins but have moved more toward the center?

We consider the margins to be issues that have ethical implications but are not always highlighted in mainstream bioethics discourse. Bioethics as a discipline is probably thinking more about “the margins” these days and bringing the issues more towards the center. Groups are springing up that focus on these issues such as the Immigration Affinity group founded by Dr. Brian Tuohy, a sociologist, within ASBH. The immigration affinity group has been very active and includes members who are true activists and advocates for undocumented people such as Katherine Peeler, Mark Kuczewski, Rachel Fabi. Those individuals likely always did that important work but perhaps their role is becoming more respected and acknowledged within bioethics. Simultaneously the current political climate has meant a lot of us have had real limitations on our research work and grant funding to address health inequity, disparities, and bias -pushing the issues and voices to the margins.

What kinds of topics or guests are you excited to host in the future?

We have a few guests lined up for the next season. Tim Schwab, who writes about the problems with philanthropy, how it undermines democracy and how the billionaire class is fundamentally unethical causing huge wealth inequity, will return to discuss his latest book. We originally interviewed him in 2023.

We also have an episode with Dr. Elizabeth Lanphier coming that discusses trauma-informed ethics consultations, a need for new bioethics methods given the new challenges we see such as climate change and concerns about collecting structural drivers of health inequity when we cannot provide solutions for patients.

We have an episode on artificial intelligence, data centers and environmental concerns in the works, and I’m sure AI will continue to be a focus but with a BITM lens.

The current political climate means we have a constant list of issues we want to highlight. I’m sure we will revisit immigration, incarceration and gun violence again.

If anyone reading this blog wants to reach out and suggest a guest or topic we’d be delighted to hear from them.

We also want to acknowledge our wonderful team including Madeline Mahony and Veda Kota sound editors, and Gargi Pandey, creative director. If others would like to join our team we’d also love to hear from you.

Thanks so much Amelia, Liz, and Kirk for sharing your background in bioethics and with the Bioethics in the Margins Podcast with us!