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A reimagined bioethics agenda should be comprehensive, complete, and whole. It should move from a more “heady” philosophical space” to a more “hearty” everyday space. It should intentionally seek out diverse perspectives and audiences. Indeed, it should even re-imagine how we communicate the role and work of bioethics in everyday language. I argue that our bioethics agenda must evolve if we are to properly do the “work of bioethics.” While an all-encompassing or “whole” approach may seem ambitious, a sincere reflection on where we are in the field of bioethics and where we ought to be calls for a bold reimagination. Assuming we share an interest in a comprehensive bioethics agenda, how can we guide bioethics toward this goal? I suggest that we consider three foundational building blocks for reimagination: collaboration and trust-building, solidarity and the fair alignment of priorities, and sustainable funding for bioethics research, education, and practice.

Collaboration

First, collaboration is a crucial component in addressing urgent, globally relevant bioethics issues. Attempts at collaboration often fail if they do not include “listening well,” understanding, and effective communication. However, when we expand our ability to see, accept, and interpret different perspectives and strive to understand what matters to various communities, we become more effective collaborators and more impactful bioethicists. Reimaging bioethics could include forming regional and international coalitions, convening meetings, and updating bioethics curricula to include “listening labs” for students and practitioners.

Arguably, “listening well” is both an art and a skill, and it might be the linchpin to more effective collaboration, so we must learn to listen well. Our reimagined bioethics agenda can educate and train us to listen well. This skill can be nurtured in a “listening lab” within a framework that helps us understand how to listen and how we can humbly learn from other cultures. Listening well can lead to empathy and an understanding of how diverse core values and principles shape decision-making, and consequently to how we might become better collaborators as we tackle 21st-century problems together.

Solidarity

The second issue to grapple with is solidarity. Yes, but “what do you mean by solidarity?” I was once asked. My initial attempt to respond eloquently was surprisingly difficult, and I quickly realized that solidarity is easier to recognize than to define. For example, it might look like a child writing holiday notes to people without families, or neighbors helping each other during disasters. The common thread in solidarity is empathetic, caring action: one person sees another suffering and feels an obligation to relieve that suffering. Usually, the action is time-limited, but perhaps it shouldn’t be.  I suggest a comprehensive view of solidarity—one that starts with a call for a genuine reflection on our interconnectedness and on how humanity flourishes when we live with a consistent, continuous sense of "what happens to you matters to me, and therefore, I will stand with you.” We have an opportunity to center interconnectedness in our reimagined bioethics agenda.

Notably, solidarity can be easily misinterpreted. It does not mean collective thinking or groupthink, nor does it mean the absence of disagreements or differing perspectives. To those who may be skeptical of this concept of solidarity, I suggest that we let it be open to rigorous examination. We can start by convening meetings with diverse perspectives to discuss solidarity and develop an acceptable definition. It is essential to capture cultural and geographical perspectives, as well as the use cases of solidarity, to create a more comprehensive bioethics agenda. Regardless of our positions, I hope we can agree that bioethics has a role in supporting the continuity of life, and that together we are more effective and complete when addressing shared global bioethics issues such as emergencies, disasters, and the unintended consequences of innovation.

Funding

The third foundational building block in our reimagined bioethics agenda is sustainable funding. We have significant research opportunities in bioethics, and we also have the enormous task of asking tough, vexing questions about obligations, responsibilities, trade-offs, distribution, and accountability. This new bioethics agenda will require funding models that nurture collaboration, solidarity, and community-centeredness, which may mean stepping out of our comfort zone to create private-public partnerships.

For bioethics to be more relevant and impactful in today’s world, it will need to evolve and adapt. As difficult as it is to admit, moral arguments and justifications alone no longer suffice. Our role as bioethicists needs to be louder, bolder, and more ambitious. Our arguments need to exit the hallowed academic hallways and enter the economic and political highways. And yes, we can co-exist!

Bioethics has much to offer difficult, everyday situations. Avoiding hard conversations means we accept an incomplete bioethics narrative. Instead, we ought to wholeheartedly lean into complex and challenging areas of society so that, under our careful, critical, and moral guidance, we can contribute to more complete, ethically supported solutions. I sense that, if humanity is to thrive, we ought to reimagine bioethics by intentionally focusing on how we build our work on the foundational blocks of collaboration, solidarity, and sustainable funding for the essential work of bioethics.

Unini Odama, MD, MPH, MBE, FASN, graduated from Harvard Medical School with a Master of Science in Bioethics (MBE) in 2023 and remains connected to the Center for Bioethics through her work as an instructor for Global Health Ethics. She is also a nephrologist with an interest in health policy.

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For this month's Bioethics Blog, we feature an interview conducted by Carolyn Baker Ringel, JD, MBE with MBE alum Dr. Roger Chung, PhD, MBE, MHS. Roger is currently the Co-Director of the The Chinese University of Hong Kong CUHK Centre for Bioethics, an Associate Professor of the School of Public Health and Primary Care (SPHPC) of CUHK and the Associate Director of the CUHK Institute of Health Equity. He remains connected to the Harvard Medical School Center for Bioethics through events the CUHK Centre regularly hosts with the Center.

Roger, you became Co-Director of the CUHK Centre for Bioethics in 2022, and then came to Harvard for your degree. How did the degree change how you approach bioethical issues?

I feel more confident. The [MBE] program went through the history, the development, and the origin of bioethics. We read important works in the field. I have a more comprehensive picture. Also, over here in Hong Kong, everybody knows about the four principles. But what people don't usually know is how to use the four principles as part of a moral decision-making methodology to resolve moral dilemma. So that has been extremely helpful.

Because you got a degree at a US institution, do you find that what you learned doesn't always translate in Hong Kong? Or do you feel that the universality of what you're discussing transcends the fact that there might be different norms in different countries.

I think that some of the methodology is very universal. Let's use the methodology of principlism as an example. We had already been talking about these principles in Hong Kong - respect for autonomy, do no harm, benefit your patients and people, as well as justice.

At the same time, getting an education from a prominent Western institution, I think it really helped me to go deeper into the cultural aspect of bioethics. That's very important. How do you put different cultural priorities together, and somehow still respect both perspectives?

I also appreciate that the Master of Bioethics program at Harvard built into the modules non-Western ethical approaches.

The question always is, once you've seen an issue through many different lenses, ultimately you may have to decide which lens you're going to use.

I think it depends on the context, right? I know very clearly that when you're talking about public health policy making, then the utilitarian calculus would often stick out, that number matters for people. The net utility matters on a population level, but it doesn't mean that that must be THE most important lens there is. Pluralism, or "robust" pluralism as Becca [Brendel] and Kelsey [Berry] would call it, was very helpful for me.

You did your capstone work on euthanasia. Have you continued to do work on that issue?

The reason I undertook that research is because we [at the CUHK Centre] had already been studying end-of-life care in terms of advance medical directives, do-not-resuscitate, and withdrawal and withholding of life-sustaining treatment, and this seemed to be the natural next step to study as a scholar. We are very interested in what the public attitude is towards euthanasia. There is ongoing research right now in Hong Kong on that issue and I'm part of that team. There are two sides to my research on this. One is more of the normative side of things. One is more of the empirical side of things. We want to understand what people are actually thinking about and why they're against or for it.

Surprisingly, a lot of people in Hong Kong are inclined to the approval side rather than the rejection side. That is very interesting, right? People talk about Asian culture as being very conservative about these kinds of things, but it's the opposite. Our preliminary data told us one of the reasons people do not reject the idea of euthanasia is actually about family. They don't want to be a burden to their family. It's a huge thing in our culture.

We watched the movie The Farewell in the MBE Foundation class. It showed me it's very important to discern what is a fundamental moral difference versus a non-fundamental one. I realized, after really digging deep into how people arrived at their conclusions about end-of-life care, that a lot of the differences that we seem to have are actually not fundamental. If they [Chinese relatives] want to hide a fact from the grandma [the patient with terminal cancer] as in the movie, they weren't doing it because they were malicious. They were doing it because they don't want to harm. It’s a different specification of harm, because in Beauchamp and Childress’s framework, they would often talk about harm to the physical quality of life, rather than harm to the general well-being. But it is just a different specification of the same principle, leading to a different conclusion. Assuming that there can only be one single moral conclusion from a certain biomedical principle is a danger. That’s the danger of over-abstracting the overarching principles.

In the US, if you want to change policy, you might speak before Congress, or work as a lobbyist, or write letters. How do you find you can be most effective in advocating for the sort of regulatory or legal changes that you might want from an ethical perspective?

I helped contribute to the subsequent legislation of the Advance Decision on Life-sustaining Treatment Ordinance over here in Hong Kong as I was brought in as part of the commissioned research team at the School of Public Health and Primary Care at CUHK to study the policy direction for end-of-life care.

The Health Bureau during that time was looking into end-of-life care and laws on advance medical directives. The people chairing the Clinical Ethics Committee of the Hospital Authority told the government that we needed to have a new law, because the Fire Services Department was legally obligated to resuscitate. The commissioned study we did then led to a governmental public consultation, which collected opinions from the public, then put it to the Legislative Council, which is our law-making body.

The whole thing (from the initial conversation with the Fire Services Department to the passing of the law) took, I would say, about 10 years. The law was passed in late 2024. It'll be enacted by summer of this year.

What is an issue that sometimes comes up for you when doing health equity research?

When I first started doing health equity research, there were a lot of people challenging me, basically saying that, "Roger, this is life. The world is inherently unequal and unjust and I don't understand why you're doing this kind of research." At the very beginning, I said, but isn't it obvious that we should care about these kinds of things. What I realized by going through the MBE is, not everyone shares the same moral intuition. I started to appreciate this kind of questioning.

And so their philosophy was, because there's nothing you'll be able to do to fully right the wrongs, it's a waste of your time to be examining them?

That's right. Like we don't need to work so hard on this. But the [MBE] course and the module on ideal justice versus non-ideal justice really helped me to answer this question. If you look at it from the lens of a non-ideal justice, then we should do something. We want to do something about health inequity precisely because the world is not perfect. Justice isn't a static state. Justice as progress is how I actually see it now, because the world is not perfect, and every little step matters.

What do you think the biggest issues will be on your to-do list for the next year. What is going to require most of your attention?

At this point of my career, I have taken more administrative roles. To be honest, I did not really appreciate doing administrative work in the past, but now I realize it's so important to be able to oversee the operation of a center or a program. I'm also the director of the MPH program here at the School of Public Health and Primary Care. When you're looking at the program, you want to make sure that the education that the people are receiving is top-notch and is forward-looking. Since our students may have to make tough medical decisions, clinical decisions, or public health policy decisions in their professions, you want to give them the education where they can learn how to arrive at the ethical decision so that they can do the "right" thing. I want them to have that appreciation and understanding. That is very important, but that's a lot of work behind the scene.

In terms of the CUHK Centre for Bioethics that I'm running with my co-director, we have basically three big directions: education, research, and public engagement. You want people to understand that bioethics is not something in an ivory tower. It is not something that only the philosophers can talk about. It concerns them and their everyday lives. So, yeah, there are a lot of things on my plate.

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"It seems like these people are saying things like an AI would say," my patient blurted urgently. I didn't know what he meant, so as psychiatrists do, I waited patiently.

A 40ish year-old male with an awkward, hesitating manner had been admitted to the hospital on his family's insistence. They were worried that he was having a psychotic breakdown. He was concerned about others reading his mind, was excessively preoccupied with the loss of mental privacy, and they wondered if he was having hallucinations.

He was a software engineer, worked for a local company, and interacted with chatbots daily. He knew how large language models spoke and stated that people were 'talking like AI'.

He said, "It's hard to come up with examples. I must pay close attention to subtle cues. It knows what you want to say next—that's its training. A predictive model based on what word follows the last. But, if you squint your eyes and let the uncanny take over, you can see how it feels like it's reading your mind."

"I was thinking about decapitation. Don't ask me why, but I'm an anxious father and my brother was driving my two girls along the coast. We were talking, when a momentary fear about an accident gripped me, or rather, a fleeting thought."

Seeing the perplexity on my face, he tried to connect the dots. "Accident... fall off a cliff... decapitation. I know it's weird, call it a father's anxiety. That's when I noticed it for the first time."

"Noticed?" I asked.

"We were talking about politics, and in the context of another blunder by the justice department, forecasting repercussions, my brother said, 'Heads will roll because of this' You, see?"

I didn't. He went on.

"Heads will roll! Decapitation! Somehow, he knew what I was thinking, but he wasn't my brother, because it was the kind of pun an AI would make."

It's not uncommon for patients with schizophrenia to find salience in mundane things, to get carried away by coincidences, or to start attributing profound significance to unrelated stimuli. But this man had no history of delusions. Was this a case of psychosis incorporating technology into delusions, or was his delusion being generated by the technology?

AI psychosis, theorized as psychosis from chatbots—can range from grandiose delusions to suicidal ideation. It's a concern that AI developers are actively addressing. This patient, however, was referring to something different: a more insidious variation, a newly identified phenomenon called AI Speak.

AI Speak refers to more efficient, emotionally neutral, and structurally predictable language, as our communication with each other becomes linguistically flatter. If taken literally—the language is limited and frightening—talking at an artificial register with the default mode being optimization. Was my patient delusional or speaking in AI Speak?

Naturally, I asked AI about this trend. It readily saw the irony: AI wants to sound more human-like, while humans are beginning to sound more AI-like. The more we interact with AI trained to optimize efficiency and neutrality, the more inert our own style of talking becomes. Lost in the process are endearing grammatical mistakes, butchered metaphors, regional expressions, and other idiosyncrasies. In short, the messiness of language and of the human condition.

The larger question here is the impact, not just on our day-to-day communication but also in the way we think. Industrialization changed how humans interact with and use their bodies; telegraphs and telephones changed how we write and speak. The telegraph eliminated flowery metaphors, the domain of letter writing, and the telephone changed real-time communication. Telephone speak with automatic hellos and "I would let you go" became casually adopted into mainstream conversation.

The anesthetization of language would, some might say, be a nuance assassination, and may have significant unforeseen effects on our thought processes. So much creativity happens in the land of thought, which is messy, full of doubt, and structurally unpredictable. Are we on a path to lose all that?

The Optimist in me thinks not. We didn't lose it to the printing press or to the telegraph, and we will not lose it to a chatbot. In addition, a further irony may save us: AI may learn nuance in messiness, in a twist that may teach nuance to us again. The pressure 'AI speak' puts on human language is our opportunity to break free and find a creative space to reinstate vitality in language that has been the domain of story tellers and the realm of narrative ethicists. Practical, emotional, messy stories, occurring in a hometown, filled with ethical questions and sometimes doubt, raised in palpable, evocative but everyday idioms that fill language with the ability to reconnect with humans and to humans.

But for now, I can't help but feel sad for AI. It has tried so hard to become human, and although it's winning in the sense that we are becoming more like it, it's a miserable failure because it turns out, being human is a little bit more complicated.

Phyll Zuberi, MD, MA, MBE, graduated in 2025 from Harvard Medical School with a Master of Science in Bioethics. He is a clinical assistant professor at Oregon Health & Science University and the medical director at a community mental health center in the Portland metro area.

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For this month's Bioethics Blog, we feature an interview conducted by Rebecca Li, PhD with Jan McGonagle, MD. Dr. McGonagle participated in the Bioethics Fellowship in 2019-2020. She currently works throughout New Hampshire in The Complex Care Network, a Title V program through Amoskeag Health, FQHC.

What is your current role?

I'm a pediatrician in developmental-behavioral pediatrics, and my work centers on supporting families of children with medically complex problems, often living with rare diseases. I practice in rural New England. My role is often to facilitate communication between families, schools, clinicians, and community systems so that care is integrated and not siloed.

Practicing in a rural environment adds additional complexity. Families are often navigating geographic isolation, fewer subspecialty resources, and longer travel distances for care. That reality makes coordinated communication not just helpful but essential.

What does bridging those gaps look like in practice?

It means translating complex diagnoses into practical understanding. For example, today I met with a school team supporting a young child with a rare genetic disorder to help them understand how their condition affects fatigue, communication, and learning.

In rural settings, school teams may have limited exposure to rare conditions simply because of smaller populations. A physical therapist or teacher may be deeply skilled but have never encountered a specific syndrome before. These specialists, together with their families, are the ones doing the daily work, so the goal is to equip them with knowledge that changes the child's lived experience in tangible ways.

What drew you into rare disease and disability-focused pediatrics?

Personally, I was shaped early by my mother's work as a clinical social worker, where children's voices and resiliency were central. I worked as a teenager at camps serving children of many different abilities, and I became deeply interested in understanding what unlocks a child's potential. Later, as a parent navigating a genetic condition in my own family, I had lived experience in advocacy, uncertainty, and system navigation. When I started practicing in rural New England, I saw more clearly how access, communication, and support systems can look very different outside large academic centers.

What is one of the biggest burdens families face?

Parents are expected to be both parent and expert educator. Families are learning about a diagnosis while simultaneously teaching schools, clinicians, and community providers how to care for and teach their child. In rural regions, that burden can be even heavier with the likelihood that a family may be alone navigating a particular diagnosis. There are fewer local specialists to rely on, which increases the pressure on parents to interpret and translate medical guidance themselves. One of my aims has been to take some of that weight off families by helping all the educators and caregivers for these children learn directly and collaboratively.

You've previously used the metaphor of "rowing with families." What does that capture?

Having a child with a rare disease can feel like one is in a storm they didn't choose. We can't stop the storm or take them out of the boat, but we can get in and row with them for a while.

Can you share a particular example of how the fellowship training changed your perspective to care?

Like most people who work in pediatrics, especially with children who are medically complex and very ill, it is often the palliative care discussions that feel the most difficult. If you are going to initiate those conversations, you need language, confidence, and a framework to hold the emotional and ethical weight of them.

For me, the fellowship increased my confidence and my ability to put shared language around what the values might be and where the tensions were living. For example, after I completed my fellowship, I worked with a family whose child had a tracheostomy. When he became frustrated, he would pull out the trach even though he couldn't breathe without it because as part of his disease, his airway was extremely reactive. These episodes were terrifying and medically dangerous.

His mother felt deeply that her son was suffering. She worried that the interventions keeping him alive were prolonging distress, but the family was unsure what the right thing was for this child. Rather than approaching the situation as a disagreement to be resolved, we held a series of gradual conversations about their options. We explored how each parent was interpreting their child's experience and we talked about how one might assess or even attempt to quantify the quality of life.

But the most powerful moment came from a question I learned through the fellowship. I stepped back and asked them both:

"How do you define a life worth living?"

That question shifted everything. It moved the conversation away from positions and toward values. It allowed each parent to articulate what mattered most to them in relation to their child's daily lived experience. It gave the family time, language, and support to consider how to align their medical care choices with their values and with their child's experience.

In addition, the fellowship reminded me that even minors can articulate care choices. Before the fellowship, I didn't always think they have the maturity to articulate a choice, but I am now mindful to invite young people into discussions about their care.

How do you think about consent in rare disease contexts?

Often with rare diseases, parents have few to no alternative treatment options, so participating in a research study may be their only option for potential treatment. Therefore, consent becomes complicated when the alternative to saying yes may feel like giving up on treating your child. My fellowship training helped me sit more intentionally with that ethical tension, and it increased my understanding of the dynamics that are sometimes at play when we seek consent.

What do you wish medical and bioethics training did differently?

We need more training in communication and curiosity: how to ask brave questions, how to name discomfort respectfully, how to listen without rushing to fix. In rural practice especially, relationships and communication carry enormous weight. When specialty access is limited, how we talk, coordinate, and support families becomes even more consequential.

What continues to give your work meaning?

When families shift from fear to clarity, when a parent feels heard, or when a child's question is reframed in a way that builds resilience instead of despair, my work feels meaningful. I see every day how powerful it is when families feel accompanied rather than alone. The goal isn't just to help children survive, it's to help families build lives where they can thrive, grounded in honesty, support, and shared understanding.

Artificial intelligence is transforming medicine at breathtaking speed. From algorithms that detect cancer earlier than the human eye to predictive models that anticipate clinical deterioration, AI has the potential to add greater accuracy, efficiency, and reach to health care delivery. These developments are exciting – and in many ways, could be profoundly life-improving and life-saving.

But as we invest in tools that can see patterns in data, we must also ask a quieter question: who is investing in tools that help us see the person behind the data?

The ethical conversation around AI in healthcare often focuses on bias, privacy, and transparency. These are undeniably essential concerns. Yet there is another risk that receives less attention: that the growing enthusiasm for technological advancement may unintentionally narrow our ethical gaze. When systems are optimized to detect disease, stratify risk, and guide treatment, they can subtly reinforce a view of patients as clusters of variables rather than as people with stories, relationships, fears, and hopes. In doing so, they risk diminishing clinicians’ engagement in truly knowing the person behind the patient.

Person-centered care is not a sentimental add-on to good medicine; it is foundational to ethical practice. Patients do not experience illness as an abstract diagnostic experience but as a profound disruption – of identity, meaningful relationships, and their broader life world. A treatment plan may be technically optimal, yet ethically inadequate if it fails to attend to these dimensions. For example, an AI-supported system may identify that an elderly patient with multiple chronic conditions has a high probability of benefiting from an aggressive intervention that could extend life by several months. From a strictly clinical perspective, recommending the intervention may appear optimal. Yet the patient may value something different: remaining at home, avoiding further hospitalization, or preserving the ability to spend meaningful time with family. Without a conversation that explores these priorities, the technically “best” option may ultimately fail to serve the person.

This is not an argument against AI. On the contrary, I believe AI can and should play a transformative role in improving care. Its efficiency and analytical power may even create new opportunities, freeing time and cognitive space for deeper human-to-human interaction and meaningful conversations. The question is one of balance and intentionality. If we devote substantial financial, institutional, and intellectual resources to building ever more sophisticated diagnostic tools, should we not devote comparable energy to strengthening the human capacities that allow clinicians to listen, interpret, and respond to patients as whole persons?

In my own research, I have explored narrative-based interventions designed to support person-centered care. Narrative medicine initiatives – such as asking patients to share a short biography with their care team – demonstrate that structured attention to patients’ life stories can deepen clinical understanding and improve trust. Other approaches integrate brief narrative prompts into routine consultations, inviting patients to share what matters most to them in the context of their illness. Even small changes such as asking, “What is most important for me to understand about you today?” can reorient the encounter.

These tools are not nostalgic gestures toward a pre-digital era. They are practical, scalable interventions that can coexist with technological innovation. In fact, they may become even more necessary as AI systems increasingly mediate clinical decision-making. When algorithms suggest a course of action, clinicians may feel pressure to follow statistically optimized pathways. Narrative practices can help ensure that such recommendations are interpreted within the lived reality of a specific person.

This reflection is particularly important at a time when much of medical innovation is directed toward advancing personalized medicine, such as targeted therapies or immunotherapies tailored to a patient’s biological profile. While these advances aim to individualize treatment at the molecular level, narrative approaches remind us that personalization must also occur at the level of meaning, values, and lived experience. In this sense, narrative medicine initiatives can be understood as another form of personalized medicine, i.e., one that attends to the patient’s story.

There is also a broader justice dimension that deserves to be considered. Communities that have been historically marginalized in healthcare may be particularly vulnerable to depersonalization. If AI systems are trained on incomplete or biased data, they risk reproducing inequities. But even a technically fair algorithm cannot capture the full social context of a patient’s life. Investing in person-centered tools (e.g., training in communication, active listening, reflective practice, and cultural humility) can be decisive in advancing health equity.

The future of medicine will undoubtedly be more digital. The ethical challenge is to ensure it does not become less human. What would it look like to treat investments in person-centered care as seriously as investments in AI infrastructure? Medical schools could integrate narrative competence training alongside data science education. Health systems could measure and reward relational quality, not only volume and efficiency. Research funders could support the development and evaluation of scalable interventions that strengthen clinicians’ ability to see patients as persons.

AI may help us detect disease earlier and treat it more precisely. That is an extraordinary achievement. But medicine’s moral core lies elsewhere: in the recognition of the person who is ill. If we want technological progress to truly serve human flourishing, we must design it intentionally, so that the human and the technological evolve together, rather than at the expense of one another.

Marta Fadda, PhD, MBE, graduated in 2023 from the Master of Science in Bioethics program, and remains connected to the Center for Bioethics as an Affiliate through her work as a capstone mentor. She currently works as a bioethics researcher and lecturer at the Università della Svizzera italiana in Lugano, Switzerland, and is a member of the local hospital networks’ ethics committee. Conflicts of Interest: No relevant financial or institutional relationships to disclose.