These are two powerful words that show up in Tayari Jones’s reflections on Leaving Atlanta, her novel about Black children growing up during the Atlanta Child Murders of 1979–1981. Jones describes how the fear of those years remained with her long after childhood and resurfaced when a young boy she was tutoring failed to show for his appointment one day.

I also remember. I recently had a conversation with my graduate school friend, B, who also lived in Atlanta as a child during those times. Our conversation helped me understand that remembering the same tragedy does not mean experiencing it in the same way.

I was nine years old during the Atlanta Child Murders. My family lived in an affluent suburban community near the Chattahoochee River. When a body was discovered in the river near our neighborhood, all parents of our subdivision went into high alert and became concerned for their own children’s safety. My brother and I took in their anxiety for sure.

Looking back, the contrast between our parents’ fears and our actual surroundings was ironic. We lived in a gated community where families were affluent, had residential security systems, and access to opportunities that were not equally available throughout metropolitan Atlanta. I’m sure many parents of children living in the Atlanta area were fearful for the safety of all of us.  But our individual living circumstances were quite different.

My interest in revisiting this history emerged because I had begun examining historical questions about informed consent in a CDC investigation surrounding the Atlanta Child Murders and was seeking relevant documents through the Freedom of Information Act. At the same time, I was having teaching conversations with residents about bioethicist Keisha Ray’s Black Health: The Social, Political, and Cultural Determinants of Black People’s Health. Conversations about her work, including its discussion of sleep, led me to reconsider the Atlanta Child Murders through a different ethical lens and opened conversations with my friend B.

B grew up near Techwood Homes in Atlanta. Like me, she had been a child around age 9. During those talks, our conversation turned to sleep. Not unlike the childhood story of author Tayari Jones, my friend also knew one of the missing and murdered children. She mentioned: “Everyone knew one another, we all attended church or school together, and our mothers talked to each other.” The violence was not only reported on television, but it was also experienced in real time by her community.

She described remaining hyper-vigilant for years afterward. Even as an adult, she continues to experience difficulty sleeping.

Then she told me something I have not forgotten.

When B attended graduate school, she had a scholarship and federal student loans, so her financial resources were limited. Nevertheless, she actively sought out the “white affluent neighborhood” and then spent more money on housing because she told me, “She wanted to feel safe at night.” B laughed when telling me, but her explanation was serious. She was willing to pay more for the possibility of peaceful sleep.

Her story brought me back to the part of Ray’s book asking Does where we sleep matter?  In this chapter of Black Health, Ray argues that sleep cannot be understood without also considering the social, political, and environmental circumstances in which people live. If we live in dangerous areas, we will not sleep well. She examines housing inequality, environmental injustice, racial discrimination, and the effects of vigilance on sleep health. This challenges the assumption that poor sleep can be solved through individual choices.

There has been substantial research on how growing up in a dangerous environment can lead to hypervigilance and poor sleep in adulthood. The research I’ve found connects three issues: a child growing up in a neighborhood where there is upheaval, domestic violence, or even ongoing threats to their own safety. The child then learns to become alert to danger as a necessary personal protection response. Ultimately, this defense posture can produce effects like difficulty falling asleep, staying asleep, and such continues into adulthood.

The fear that surrounded the Atlanta Child Murders allows us to consider what happens when people must remain alert to threats that are largely beyond their control.

For children, the ethical problem is disconcerting. Children cannot choose their neighborhoods, determine how legal systems respond to danger, or independently obtain safer housing. Their parents and caregivers can act with extraordinary care and devotion, but even the strongest families cannot eliminate every threat arising in their neighborhood just beyond the home.

B’s later housing decision reveals something ironic to me about autonomy. She had the freedom to live in, what she felt, was a safer neighborhood, but exercising that freedom came at a cost. The money she had to buy that safer housing could have been directed toward her other needs during graduate school. With that said, there is a meaningful ethical difference between paying more for desirable amenities and paying more because one feels unable to sleep peacefully elsewhere.

I agree that discussions about sleep hygiene, including regular bedtimes, quiet bedrooms, and comfortable sleeping conditions, may be useful. But as Ray points out, they assume everyone has access to resources and safe environments that, in actuality, are not equally available.

The historical record reinforces the importance of taking these experiences seriously. Contemporary accounts of the Atlanta Child Murders described frightened children, disrupted routines, and nightmares. An eleven-year-old described dreaming that the killer was coming for him and waking up frightened. Decades later, some relatives of victims continued to describe disturbing dreams. These accounts do not establish that everyone who lived through the murders developed lasting sleep difficulties. They do, however, remind us that the consequences of violence may extend beyond its immediate victims and beyond the years in which it occurs.

For years, I thought of the Atlanta Child Murders as something my family had lived through. That remains true. Our parents’ fear was real, and it affected our household. But my conversation with my friend revealed how differently that fear could be experienced depending on one’s proximity to violence and access to protection.

Tayari Jones’s words, “We remembered,” capture the persistence of that history. But memory does not carry the same weight for everyone. I remembered my mother’s fear in a relatively secure suburban home. My friend remembered a child she knew who was killed, years of vigilance, and the continuing difficulty of sleeping peacefully. Later, she used scarce resources to seek the kind of neighborhood security that had surrounded my childhood.

Bioethics should address that difference. It would be an interesting change if we asked whether someone feels safe enough to rest where they live, rather than asking whether they are getting enough sleep or giving sleep hygiene advice. No one should have to spend beyond their means simply to find a place where they believe they can close their eyes without fear.

Kyoko L. Yoda, DMD, MSPH, MSD is an instructor at Children’s Hospital Colorado.

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In 2009, I sat in Jamie Nelson’s office at Michigan State University, struggling to see my way toward finishing my dissertation. The stumbling block? A profound sense that the work was interesting, perhaps even important, and deeply imperfect with unresolved problems that perhaps I had not even detected yet. I voiced this carefully. I was in fact paralyzed by it. Jamie gestured at the walls of her office, stacked floor to ceiling with bioethics books, philosophy books, and a large number of Jane Austen novels. Reassuring me that it’s ok to not have developed the final perfect approach to a thing, Jamie said, “Do you see all of these? If all of the brilliant and thoughtful authors of these works had solved everything, you and I would be a out of a job.” The aim of our work is not to be a solo explorer staking uncontestable claims, she taught me. The aim is to take part in building a path to a better world, the building of which is itself the making of that better world.

Following Jamie’s own research over the course of her life in philosophy and bioethics, we can see this sort of joyful exploration of ideas aimed always at building a world in which more people can flourish, and especially those people whose needs and labor are too often overlooked by our academic disciplines, our society, and our health care systems. She developed rich work on families and healthcare (often working in tandem with Hilde Lindemann Nelson), on mental health care as a site of problematic interventions that could be made better, on feminist bioethics issues, and on the lives of queer and trans folks in general and in the health care context. This is by no means an exhaustive list. But throughout, Jamie offered clarion calls in plain language to philosophers, clinicians, policymakers, and bioethicists to do better while remaining clear-eyed that people generally are trying to do exactly that and that we need each other’s insights to work together in order to get closer to achieving it.

In her 2014 Hastings Center Report piece, “Medicine and making sense of queer lives,” we see these features. Jamie opened by writing, “As practiced, medicine bumps along with the rest of us, doing its level best to cope with the contingencies of this often heartbreaking world” and went on to acknowledge the difficulties associated with making sense of queerness that “can vex deeply thoughtful people of undoubted good will—as I found out some years ago when I first talked about my efforts to understand my own transgender identity…” This kind of compassion for the difficulties of working through things, though, did not lead Jamie to let people off the hook. It simply led her to better appreciate the nature of the hooks on which we all are hung, as we negotiate them.

Jamie could understand how difficult it is to work through issues of gender and queerness—and the role of the family, and caregiving issues, and mental health care, and a host of deeply human issues—while still holding folks to account. Indeed, her 1998 piece, “The Silence of the bioethicists: Ethical and Political Aspects of Managing Gender Dysphoria” was published long before her own transition and was a call to fellow bioethicists to engage the issue robustly rather than leaving it, a topic she followed up on in her 2012 piece in the Journal of Bioethical Inquiry, “Still quiet after all these years: revisiting ‘the silence of the bioethicists.’” 

Jamie offered a model we could all follow for what it can look like to see moral struggle, to see that it is difficult, to acknowledge that the difficulty itself is not an indicator of moral laziness or of immorality, to work through it ourselves, and to nonetheless demand that we all engage in the struggle toward goodness and crafting a better world.

I have pulled on the thread of her work that focused on Jamie’s concerns about how bioethics and clinical health care respond or fail to respond to the needs of queer and trans folks because it so beautifully embodies how Jamie’s intellectual and moral sensibilities worked, and her approach to those from whom she asked more. I assure you that if you now choose to delve into her work on the role of families in health care, or any of her other myriad topics (including the moral psychology of the novels of Jane Austen or the use of Wittgenstein in reflecting on bioethical issues), you will find these sensibilities at work. 

In a move whose humility and accuracy make me chuckle to this day, Jamie’s Facebook profile self-descriptor read “Uh… ‘fearless forger of new conceptual structures’ about sums it up.” In summation of a life that exceeds summation, her obituary read, in part, “Jamie lived her life with grace, courage, authenticity, and a wonderful sense of humor.” I’d add to this that she was intellectually generous to her students, her colleagues, and the world while remaining rigorous in almost shockingly gentle ways.

People like Jamie don’t stop asking us to do better just because they take the trouble to understand why it is hard to do so. They keep giving us reasons to do so.

As individuals who knew her, as colleagues who worked with her, or as professionals who never met her, we are better off for the time she was with us. And if we listen, still, to the way she made sense of humanity, if we can adopt the sensibility she brought to bioethics and philosophy, to learning and to mentoring, to witnessing and to urging, we can continue to make the world better than it might have been and to make the making itself gently demanding.

Alison Reiheld, PhD is a Professor at Southern Illinois University-Edwardsville

(photo credit)

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Imagine using stem cells to create a fragment of a human brain in a petri dish. It has no eyes to see, no mouth to speak, and no body to move. It’s just a part of a brain, designed to do one small aspect of what a brain does, like respond to stimulation or generate rhythmic electrical activity. It cannot tell you what it is thinking, what it is feeling, or whether it is thinking or feeling at all. Now imagine that scientists discover that this tissue has developed increasingly complex patterns of neural activity… the kinds of activity associated with complex, conscious brains. Would you handle the brain fragment in the dish differently?

Brain organoids are three-dimensional clusters of neural tissue derived from human stem cells. They are not just passive clumps of cells but have been found to exhibit spontaneous electrical activity, coordinated neural oscillations, and even the ability to record the passage of time. Remarkably, some organoids have developed brain waves resembling those seen in preterm human infants. Organoids are valuable scientific tools that could help researchers explore new, energy-efficient forms of computation, study neurological development, model disease, and test potential treatments without relying entirely on animal or human subjects.

However, as these systems become increasingly sophisticated, questions about their existence and ethics arise. One major question preoccupying scientists, philosophers, bioethicists, and the general public is whether an organoid could become conscious.

To clarify, scientists do not currently believe that brain organoids are conscious, nor is there any established evidence that they possess subjective experience. But even that uncertainty presents a bioethical problem. Conscious states are at least part of what allows an entity to experience pain, pleasure, and sensory phenomena. If consciousness matters morally, at least to some degree, then the possibility of consciousness does too. Determining whether something is conscious could help determine whether our actions toward it are morally permissible.

Brain organoids give us a particularly strange version of this problem. They produce no behavior we could read, only electrical activity measured in the lab. Yet the possibility of consciousness, or of elements of conscious activity, looms.

We already know that something can be conscious without acting conscious. Think of dreaming, or of patients who are paralyzed but fully aware. The harder question is what evidence could ever lead us to attribute experience to something that has no way to act at all.

Philosopher David Chalmers popularized a thought experiment called the philosophical zombie, a hypothetical being that is physically identical to a normal human being, down to the last molecule, and so behaves exactly as we do, but that lacks subjective experience. In other words, it lacks what’s called phenomenal consciousness: the subjective, first-person experience of “what it’s like” to perceive, feel, and think. The zombie could use neuronal activity alone to laugh at a joke or wince when it stubs its toe. However, there is no spark of consciousness animating its actions. This is the hard problem of consciousness: even if neuroscience could explain exactly how neurons fire and how information is processed, why would any of it feel like something? Why is there an inner experience accompanying physical activity?

While Chalmers used the thought experiment to challenge the idea that consciousness can be fully explained by physical processes, the philosophical zombie raises an important ethical question as well. Intuitively, we might think that it’s less problematic to harm a zombie than to harm a human being. After all, it lacks phenomenal consciousness, which by many accounts at least in part explains humans’ moral significance. Inner lives imply that there is someone, not just something, who ought not to be harmed.

Brain organoids may present the opposite possibility. Chalmers’ zombie has everything we associate with a conscious mind, the full brain and the full range of behavior, except experience itself. An organoid has only a fragment of a brain and none of the behavior, yet it may contain some of the biological machinery associated with conscious activity.

In other words, brain organoids are potential reverse zombies that could, in theory, have phenomenally conscious states without any outward indication. Most organoids have no means of acting on the outside world. If an organoid were somehow capable of even the faintest spark of a phenomenally conscious state, it would have no way to tell us. This isn’t a purely hypothetical worry. Some patients with severe brain injuries are aware but cannot move or speak, a condition clinicians call covert consciousness.

This is why the reverse zombie is a bioethical problem. Consciousness is fundamentally a first-person phenomenon. We only have direct access to our own inner experience, and can never directly observe the inner life of others. Instead, we look for consciousness from the outside. We observe behavior and make inferences. A person might speak, react emotionally, solve problems, and describe their thoughts. These outward behaviors provide evidence that an internal experience accompanies them.

Brain organoids, on the other hand, give us a potentially silent mind. There may be nothing to observe because there is no body to express it. The philosophical zombie was designed to show that behavior alone cannot explain (or prove the existence of) conscious activity. Brain organoids now suggest that behavior may not even be necessary to raise questions about consciousness in the first place.

It might be tempting to dismiss the reverse zombie as a philosophical thought experiment. After all, there is currently no good evidence that brain organoids are conscious. Why worry about the suffering of something that may have no capacity to suffer? As science progresses, we will need to determine whether an organoid can have experiences and identify the evidence that would convince us it does. We’ve been there before. People who cannot speak or move, from non-speaking people with profound intellectual disabilities to patients diagnosed as vegetative, have often been assumed to have no inner life because they couldn’t show one. Brain imaging has since shown that some patients diagnosed as vegetative could follow instructions. Our tools for detecting minds have a track record of missing them.

The question is also harder than it looks. Phenomenal consciousness isn’t just valenced phenomenally conscious states (the goodness or badness that characterizes some subjective, first-person experiences). It also encompasses the experience itself, of seeing red, tasting something sour, or perceiving electronic stimulation, whether or not that hurts or feels good. It might turn out that the very capacity to have a phenomenally conscious experience is morally significant, or… it might not. And even if an organoid could feel something, it would remain an open question whether that capacity alone makes it the kind of being we owe moral consideration.

This does not imply that we should stop organoid research. The potential computational, scientific, and medical benefits are enormous. Consciousness is only part of the puzzle, and there are active debates about whether and how consciousness confers moral status. Instead, we suggest that two questions deserve far more attention than they get: what should count as evidence of conscious activity in a being that cannot act, and why such evidence would change what we owe it.

Ally Peabody Smith, PhD, is an assistant professor at Lehigh University’s College of Health.

Hannah Gonzales is a student at Lehigh University double-majoring in Cognitive Science and Health, Medicine, and Society.

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This editorial appears in the October 2026 Issue of the American Journal of Bioethics

In Ageism, Ableism, and Epistemic Injustice: Tracing Absence and Construction in Bioethics and Public Health, Langmann and Goldberg demonstrate how ageism and ableism operate as epistemic forces that shape whose knowledge counts in bioethics and public health. Older adults and people with disabilities are frequently excluded not only from decision-making processes but also from the production and validation of knowledge. Langman and Goldberg introduce two interrelated dynamics; absence (the exclusion of perspectives) and construction (the active reinforcement of hierarchies by institutional norms). They show how these concepts manifest through institutional norms, policy frameworks, and healthcare practices to determine who is recognized as a valid knower and what counts as legitimate knowledge. Their analysis offers a powerful account of epistemic injustice at the intersection of older age and disability.

Building on Langmann and Goldberg’s argument, we contend that the implications of their analysis extend beyond questions of representation and inclusion. To that end, we introduce the concept of epistemic imagination. Whereas epistemic injustice exposes the exclusion or marginalization of persons, perspectives, and forms of knowledge, epistemic imagination refers to the collective capacity to envision alternative, better, ways of understanding aging, disability, care, and dying. From this viewpoint, the task of bioethics is not only to ask whose knowledge counts, but also to examine which futures its conceptual frameworks advance, and which futures they may foreclose.

Our argument draws on the outcomes of a three-day interdisciplinary workshop held at the Brocher Foundation in May 2026. The workshop brought together 20 ethicists, social scientists, clinicians, anthropologists, health policy experts, and patient advocates from around the globe to develop an interdisciplinary perspective on addressing ageism and ableism in policies concerning people nearing the end of life. Through iterative dialogue, critical reflection, and collaborative deliberation, we identified key conceptual challenges and developed recommendations for promoting ethically sound, inclusive, and equitable approaches to connect policies that support aging well with policies that support dying well.

Older Age, Disability, and Dying as Sites of Epistemic Marginalization

The intersection of older age, disability and dying constitutes a revealing site of epistemic marginalization. Modern healthcare systems tend to approach later life through the lenses of risk, decline, care dependency, and functional loss. Older persons living with chronic illness, frailty, cognitive impairment, and increasing care needs often find that their experiences are interpreted through preexisting assumptions about aging rather than on their own terms. Similarly, people with disabilities frequently encounter systems that privilege professional expertise over expertise-by-experience and understand disability primarily through a medical lens. As Langmann and Goldberg and others demonstrate, such dynamics undermine the epistemic standing of those whose lives diverge from dominant norms of health, productivity, and independence.

Our workshop found that the epistemic dynamics at play extend beyond the exclusion of particular knowers or forms of knowledge. Specifically, it revealed a set of mutually reinforcing conceptual reductions that shape contemporary understandings of older age, disability, and dying. First, dominant cultural narratives that circulate in many societies continue to privilege autonomy and self-sufficiency as markers of a life well lived. In contrast, older age is frequently conflated with decline, care dependency and diminishing social value, an ageist assumption that becomes even stronger when older age and disability intersect. When later life is understood predominantly through this lens, its diversity is obscured, while ageism and ableism translate into exclusion, unequal access to services, and the neglect of the needs and priorities of older people with disabilities.

Second, dying itself occupies an epistemically peripheral position within contemporary healthcare and policy discourse. Such discourse commonly reduces death to a biomedical event and frames it as a clinical failure or a problem to be managed, rather than as a foreseeable dimension of finite human existence. As a result, end-of-life care is still predominantly understood in biomedical terms, while its relational, existential, social, and public dimensions remain comparatively neglected.

Third, these conceptual reductions are reinforced by broader systems of social inequality and intersecting forms of bias and discrimination. Socioeconomic disadvantages, insufficient access to care, social isolation, barriers to participation, and the absence of supportive networks shape experiences of aging and dying unequally, placing some individuals and groups at a far greater disadvantage than others. These inequalities also influence whose perspectives are recognized as valid and whose needs are acknowledged. Epistemic injustice at the end of life, therefore, cannot be separated from the structural conditions that produce and sustain social exclusion.

Taken together, these dynamics do more than silence particular voices. They narrow the interpretive and moral horizons through which older age, disability, care, and dying can be understood. The persistence of ageism, ableism and other “isms” including sexism, classism, and racism operate as an interconnected system that shapes whose knowledge is recognized, whose experiences are rendered intelligible, and whose perspectives remain marginalized. They influence not only who can contribute to collective understanding, but also what societies are capable of imagining and valuing as a good life in later life. Certain ways of understanding human flourishing amid human predicaments may become increasingly difficult to conceive.

Critical gerontology has long shown how dominant narratives of “successful” or “healthy” aging, together with ideals of self-sufficiency embedded within aging-in-place policies, narrow the range of lives considered desirable. Aging-in-place policies, for example, are often premised on the involvement of family members, neighbors, friends, and local communities as sources of care, while simultaneously framing it in terms of independence and self-sufficiency. Responsibility for maintaining aging in place is shifted from institutions to individuals, families, and whatever local programs may be available, but the project is still represented as one of independence and self-reliance. This framing reduces aging in place to a binary between maintaining “independent” residence or failing to do so. The association of aging in place with self-sufficiency also obscures the extent to which aging in place is a relational achievement constituted through adequately supported networks of care, infrastructures, and everyday social practices. As a result, care dependence comes to signify the failure of aging in place, while the collective labor required to sustain life at home remains largely invisible. The specific problem here is therefore not the absence of relationality but its instrumental incorporation into an otherwise individualistic framework. Relationships become a means of sustaining independence rather than a recognition of interdependence as a constitutive feature of human life.

Challenging individualistic conceptions of aging well require recognizing that human beings are fundamentally relational and embedded within networks of care, reciprocity, and mutual dependence. Frameworks such as relational autonomy and indigenous knowledge systems offer concrete alternatives of conceptualizing personhood grounded in interdependence and shared responsibility. These perspectives, however, remain peripheral within most healthcare and policy narratives, subordinated to concerns about risk management, efficiency and individual choice.

Beyond Addressing Exclusion: the Importance of Epistemic Imagination

It is precisely in response to this narrow, unsatisfactory prospect of aging that motivates our proposal of epistemic imagination: the capacity to envision alternative conceptual frameworks that recognize aging, care dependence, and mortality; not as deviations from a good life but as ordinary and constitutive dimensions of the human condition. More than a matter of knowledge production, epistemic imagination concerns the social and moral horizons that determine which ways of life become conceivable. Epistemic injustice asks who counts as a knower; epistemic imagination asks what kinds of futures can be imagined. Scholars have suggested that in times of social transformation, the capacity to reimagine established ways of thinking becomes a moral imperative. Demographic aging, increasing care demands, changing family structures, and growing social diversity require forms of imagination that not only envision more caring communities but also reimagine the social and institutional conditions that enable such communities to flourish. From this perspective, epistemic imagination is fundamentally a social and political project. It expands our capacity to imagine societies in which care and dependency are understood as normal and valuable features of human life; care is organized as a collective responsibility rather than a private obligation; and aging, disability, and mortality are recognized not as failures to achieve independence but as constitutive dimensions of the human condition.

Reimagining Aging and Dying in Bioethics

What becomes possible when epistemic imagination is expanded? First, it enables us to rethink our understandings of living and dying well, which are fundamentally entwined. Instead of defining them in terms of independence, autonomy, and functionality, we propose that they be understood through the concepts of relationality, meaningfulness, and belonging. Second, cultivating epistemic imagination encourages a shift from person-centered care alone toward a richer understanding of relational care. Such a shift does not diminish individual autonomy or voice. On the contrary, it recognizes that persons develop and express values within relationships and social and material contexts. The challenge is therefore not to replace autonomy with relationality, but to understand autonomy itself as relational and socially embedded. As such, the disability justice principle of “Nothing About Us Without Us” remains essential, ensuring that the people involved in policy making, including older persons, people with disabilities and their caregivers, can participate meaningfully in decisions that affect their lives.

Third, epistemic imagination opens new possibilities for policy. We argue for moving beyond fragmented and medicalized approaches toward integrated frameworks linking aging, caregiving, palliative care, community participation, housing, and social inclusion. Emerging models such as compassionate communities, community-based care networks and initiatives in intergenerational aging-in-appropriate-places illustrate how alternative arrangements can challenge dominant assumptions about where care belongs and who is responsible for providing it. But, as mentioned above, these approaches require continuous careful attention to inequality and to the risks of transferring responsibilities from public institutions to families and communities without adequate support. Ultimately, expanding epistemic imagination invites societies to shift from managing decline toward creating the conditions in which people can live, age, and die well enough, with whatever measure of comfort, connection, and meaning their circumstances permit. This shift requires not only new policies and practices, but also new narratives capable of recognizing aging, disability, care dependency, and mortality as ordinary and integrated aspects of our shared humanity.

Conclusion

Langmann and Goldberg demonstrate how ageism and ableism produce epistemic injustice by shaping whose knowledge is recognized and whose experiences remain invisible. We assert that their analysis points to a further challenge. Ageism and ableism do not merely exclude particular knowers; they also constrain the moral and social imagination through which societies understand aging, disability, care, and dying. The task before bioethics is, therefore, threefold. First, it must continue to confront epistemic injustice by ensuring that marginalized voices are heard and taken seriously. Second, it should critically interrogate the social, political, and institutional forces that determine which futures become imaginable, legitimate, and worthy of collective investment. Third, and perhaps most importantly, it should help cultivate alternative visions of the future in which aging, dependency, caregiving, and mortality are understood not as failures of autonomy or productivity, but as fundamental dimensions of human life. The latter, we propose, is the duty of epistemic imagination.

Acknowledgements

The authors gratefully acknowledge the Brocher Foundation for awarding the workshop grant and for hosting our workshop in May 2026. We also extend our sincere thanks to our colleagues Hyobum Jang, George Leeson, Alana Margaret Officer, and Kate Woodthorpe for their valuable intellectual contributions to the discussions leading up to and during the workshop.

Disclosure Statement

No potential conflict of interest was reported by the author(s).

Funding

This study was funded by Fondation Brocher, Scientitic Workconference Grant.

Els van Wijngaarden, PhD, et al

The post From Epistemic Injustice to Epistemic Imagination: Reframing Older Age, Disability, and Dying in Bioethics appeared first on Bioethics Today.

This editorial appears in the October 2026 Issue of the American Journal of Bioethics

In 2018, the U.S. federal guidelines were updated to require the reasonable person standard during informed consent in research settings. According to the standard, researchers must disclose to participants the risks, benefits, and purpose of the research that an “average person” would want to know before deciding to participate in research. However, as Khatiwada et al. articulate in their target article, “Reasonable to Whom…,” there is a lack of consistency in defining and operationalizing who “the average person” is and what she would want to know. Moreover, they argue that the reasonable person standard often does not incorporate the informational needs of participants who are members of the minoritized community under study.. For instance, they point to their empirical findings that patients with Autism want to be informed not just about the potential harms and benefits of research participation, but also about the research team’s positionality on Autism; whether the research uses pathologizing language; and whether it aims to or could later be used to reduce Autistic traits or eradicate Autism. According to Khatiwada et al., these matters go beyond what the “average person” would want to know.

To address these issues, Khatiwada et al. propose what they call an “individualized understanding of the reasonable person standard,” whereby consent is tailored to the needs and unique concerns of an “average person” in the target population rather than to those of an “average person” in general. Their proposal to individualize informed consent in research is twofold. First, they recommend individualizing the content disclosed during informed consent, including informing participants about how the research might impact their and their community’s unique concerns in the long-term, and supplying a positionality statement articulating the relevant views, values, and aims of the research team. Second, they recommend individualizing the delivery of information disclosed. This includes, where possible, conducting consent one-on-one, providing consent materials in advance, and offering extra time to participants who process information more slowly. Research teams can individualize both the content and delivery of their information disclosure processes by conducting community-based participatory research. This involves consulting members of the target population with lived experience for their insights, concerns, and general feedback on consent forms, processes, and protocols.

Like Khatiwada et al. and others, we believe that research teams should treat members of their target populations not merely as subjects but also, when applicable, as “co-creators of research”. We also support Khatiwada et al.’s recommendation to individualize the delivery of information during informed consent to accommodate participants with distinct emotional and learning needs. However, drawing from our work on the ethics of consent for translational neural device research, we would like to raise two questions about their proposal to individualize the content of information disclosed. First, Khatiwada et al. do not address whether ethical concerns raised by the minoritized communities under study should be disclosed only to those participants or to all participants. Second, it remains to be seen whether individualizing the content of information could place too large of a burden on research teams and participants, or bias participants against research participation.

Interpreting the Individualized Reasonable Person Standard for Disclosure in Research Consent

Khatiwada et al. do not make explicit whether an individualized informed consent process would require disclosing ethical concerns raised by the minoritized communities under study to minoritized participants alone or to all participants. We believe that all participants should be informed about legitimate and relevant ethical research concerns regardless of whether they belong to the potentially affected communities. For instance, before consenting to participating in an Autism-related research study, both neurotypical and neurodivergent participants should be informed of salient ethical concerns raised by the Autistic community.

Khatiwada et al. may be correct that the average person is unlikely to identify the importance of specific research-related concerns raised by the Autistic community. However, we respond that this does not necessarily reflect an informed, reasoned decision but rather a lack of exposure to the “neurodiversity paradigm,” which posits Autism as a “mere-difference” rather than a “bad-difference” “in need of ‘fixing’”. Without understanding this view, one is not equipped to grasp the Autistic community’s qualms with research that aims to reduce Autistic traits or “eradicate autism”. The reasonable person standard is not about what the average person would want to know prima facie, but rather what they would need to know to make an informed, rational decision. As DeLuca et al. point out in this issue, “the standard asks not what most people do, but what reasonable prudence requires under the circumstances”. This includes disclosing information that potential participants do not know they need to know. Thus, a reasonable person would want to be informed of ethical research concerns raised by minoritized communities under study so they do not ignorantly participate in research that they might otherwise find unethical.

That said, as Khatiwada et al. point out, informing participants of these kinds of concerns may not be happening in practice because they often involve potential harms that are “causally distal to the research itself” and “largely experienced by non-participants,” and the Health and Human Services (HHS) mandate only requires disclosing potential harms to participants. Unfortunately, this problem is not remedied by Khatiwada et al.’s suggestion for an individualized reasonable person standard if it does not require disclosing these concerns to all participants. Thus, instead, we raise the possibility that the HHS expand their current guidelines for risk disclosure to include potential downstream harms and potential harms to non-participants. On one hand, this could equip all participants to consider the ethical and societal consequences of participating in research. On the other hand, as we will discuss in the following sections, extra disclosures like this could make informed consent overly burdensome and discourage people from participating in research that is low risk and all-things-considered justified.

Disclosing Ethical and Downstream Societal Consequences of Research and the Positionality of Research Teams

Should participants be informed of the potential ethical and downstream societal consequences of research? To what extent? These questions are particularly pressing in the context of our own work on the ethics of translational neural device research. While investigating participant informational needs in this setting, we have found that many research teams have financial ties to neural device companies, which raises concerns about commercial influence that research participants might deem important. Moreover, even neural device research that is itself free from commercial influence can be adapted later on for commercial use.

We believe that participants are likely to want to be informed about these commercial affiliations because medical and commercial neural device research can differ in both objectives and methodology. Regarding differences in objectives, several neural device companies and industry leaders plan to go beyond the therapeutic aim of treating disorders, illnesses, and disabilities to enhancing or extending human capabilities and achieving direct interaction between AI systems and the human brain. As Paradromics CEO Matt Angle stated, “Anyone who’s building interfaces with the nervous system is building both the capability to restore capabilities and enhance capabilities”. Participants might want to know whether knowledge discovered and technology developed during medical research could be used in the future for human enhancement purposes because such goals might raise new unforeseen risks to society or otherwise conflict with their values.

Regarding methodological differences, there is a significant lack of regulatory oversight governing commercial neural device research relative to medical. Indeed, some have criticized Neuralink trials for their lack of transparency and scientific rigor, animal rights abuses during earlier pre-human trials, and taking advantage of patients’ desperation by recruiting participants on social media. Participants would likely want to know whether research will be conducted unethically or irresponsibly or whether it could later contribute to irresponsibly or unethically conducted research.

In light of major neuro tech companies’ rapid developments, visions for the future, and lack of traditional oversight, neural device researchers may need to consider and disclose their work’s potential ethical and societal consequences. Currently, however, the HHS only requires research teams to consider and justify the downstream societal risks of research that enhances potential pandemic pathogens or involves biological agents and toxins, and even then does not require disclosing these potential harms to participants during informed consent.

Obligating research teams to disclose their positionality, commercial ties, and potential downstream consequences would raise a host of questions, however. For instance, how should research teams talk to potential participants about these issues during already long consent conversations, without overwhelming or exhausting them? What are participants then likely to do with this information? On one hand, discussion about commercial influences and troubling future uses might discourage trust and participation. On the other hand, research in behavioral economics indicates that disclosing risks can have a backfire effect of strengthening trust rather than inviting scrutiny, even if scrutiny is warranted. So long as informed consent conversations accurately reflect potential harms and benefits, we believe that this extra disclosure is unlikely to bias participants toward or against research. Still, the practical details of such disclosures ought to be further studied before they are ethically recommended as part of research consent.

Concluding Remarks

Khatiwada et al. propose to individualize information disclosure in research. We add that while research teams should individualize how information is disclosed, they should not necessarily individualize the information itself, especially information that may or should concern all participants on ethical grounds. Participants have a right to know and weigh the ethical dimensions of their participation in research. For instance, until the tech industry is better regulated, participants in neural device research should be informed of their potential contributions to the agendas and operations of neural device companies. To ensure that the ethical dimensions of research are disclosed to all participants, we have explored whether the HHS should require researchers to disclose potential harms that are downstream and experienced by nonparticipants. While its practical details ought to be worked out before it can be recommended, such a disclosure, or others like it, could help establish a normative standard in both medical and commercial neural device research going forward, and more broadly, encourage ethical deliberation across all stakeholders in research.

Statements

Research reported in this publication was supported by the National Institutes of Health under Award Number R01MH137102. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

AI was not used in the conceptualizing or writing of this editorial. We did use ChatGPT for title ideas.

Disclosure Statement

No potential conflict of interest was reported by the author(s).

Funding

This work was supported by a grant from the Dana Foundation. Research reported in this publication was also supported by the National Institutes of Health under Award Number R01MH137102. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Isabel Reardon, MA, Rachel Abraham, MA, Luke Hanson & Jennifer Blumenthal-Barby, PhD

The post Individualizing Informed Consent: For Whom, and How Far? appeared first on Bioethics Today.

The September 18^th, 2026, announcement from the Governing Body of Jehovah’s Witnesses (JW) is one of the most consequential changes to the religion’s medical doctrine in modern times. For decades, JWs were told to refuse transfusion of blood and its four principal components (red cells, white cells, plasma, and platelets). That’s no longer the case. Each JW may now decide, as a matter of conscience, whether to accept those four components from another person, and whether to donate blood so that components can be made for someone else. Whole-blood transfusion is still prohibited.

So, the change is big, but it’s easy to overstate. JWs haven’t abandoned their teaching on blood. What they’ve done is move from a centrally imposed ban on the main therapeutic components of blood to something much closer to individual autonomy.

Refusal of medically recommended blood products has been a major bioethical issue for patients and clinicians for four generations. A JW patient might accept antibiotics, surgery, anesthesia, dialysis, and sophisticated blood-conservation technology, yet refuse a red-cell transfusion that could save their life. Religious liberty, bodily autonomy, clinical judgment, parental authority, and the state’s interest in preserving life repeatedly collided with JW doctrine onblood products. How does a clinician respect their patient’s autonomy and their ethical obligations to support their patient’s life and well-being?

The ethical problem wasn’t just religion versus medicine. The standard principles of bioethics were pulled in different directions depending on the circumstances. Few other communities have such a long legal history attempting to determine what ought to be done and when.

For competent adults, one of the key cases was In re Brooks’ Estate (Illinois, 1965). Bernice Brooks, a JW who had made clear she wouldn’t accept blood, was transfused after a court appointed a conservator to consent on her behalf. The Illinois Supreme Court reversed that authorization. The case became an important statement of the principle that a competent adult’s religious refusal of treatment can’t be overridden just because physicians believe the treatment would save her life.

Children were a different matter, and the groundwork was laid two decades earlier in a case that had nothing to do with medicine.

In Prince v. Massachusetts (1944), Sarah Prince, a JW, was convicted under MA’s child labor laws after her nine-year-old niece and ward joined her in distributing JWs literature. Prince argued that the conviction violated her religious freedom and rights as a guardian. The US Supreme Court disagreed. Writing for the majority, Justice Rutledge acknowledged the weight of family and religious liberty but held that neither is beyond limitation when a child’s welfare is at stake. He noted that the right to practice religion freely “does not include liberty to expose the community or the child to communicable disease or the latter to ill health or death.” Then came the line that’s been quoted in pediatric ethics ever since:

“Parents may be free to become martyrs themselves. But it does not follow they are free, in identical circumstances, to make martyrs of their children before they have reached the age of full and legal discretion when they can make that choice for themselves.“

Prince wasn’t a transfusion case. The JWs’ blood doctrine didn’t even exist yet. But it gave courts the principle they cited repeatedly, once the doctrine was issued. American law drew a firm line between an adult’s right to refuse treatment and a parent’s authority to refuse lifesaving treatment for a child. Under its parens patriae power, the state could step in when a child’s life was at risk.

Niebla v. County of San Diego (1992) shows the dilemma clearly. Angelica Niebla was a JW child whose parents twice objected to a transfusion. Once, at twelve and again at fifteen, San Diego County social workers obtained emergency orders authorizing transfusions. The Ninth Circuit upheld the dismissal of the family’s constitutional claims, recognizing the state’s compelling interest in protecting children from serious medical harm. Niebla ultimately improved without the need for a blood transfusion, but it is well established in law that parental authority would be overridden where the risk of death from lack of a transfusion was present.

What are the true implications of the 2026 change? Before, a JW who needed red cells, plasma or platelets could face a stark choice: accept a treatment their faith prohibited or refuse therapy that might save their life.  Now, this historical conflict evaporates for many patients – just like that.

Now, accepting red cells, white cells, plasma and platelets is a matter of personal conscience. The organization says plainly that congregations shouldn’t get involved in the decision and that JWs shouldn’t judge one another for it. Ethically, that matters. The largest impact will be eliminating the pressure some JWs feel over these decisions and reducing the perceived spiritual harm of accepting component blood products. They may no longer have to decide between physicians’ recommendations and community shunning or even excommunication (disfellowshipping). This may also improve shared decision-making, especially in pediatrics, where, before, parents had to decide between spiritual harm and ostracization or their child’s health, often setting up significant conflicts with clinicians and the State. For some, this is now a matter of personal conscience; for others, it changes nothing.

It should not be forgotten that the JW’s blood doctrine has inspired innovations that have reduced blood product need and have benefited society. It is also important to point out that transfusion carries risks of its own. Thus, it is difficult to know how many lives this change may save, as any figure is an epidemiological extrapolation.

A 1993 review of 16 reports covering 1,404 JW surgical patients found that roughly 0.5% to 1.5% of these operations were complicated by anemia, leading to death. A separate analysis of 103 JW patients with severe symptomatic anemia found a mortality of 20.4%, compared with 1.9% in matched patients who were transfused. From these data, analysts derived an estimated excess mortality of about 0.015% of the JW population per year.

Apply that rate to the approximately 9.2 million active JWs worldwide in 2025, and you get approximately 1,380 potentially attributable deaths per year. That figure shouldn’t be read as “1,380 JWs will now be saved.” It’s an extrapolation built on myriad assumptions. Nonetheless, it is fair to interpret that the 2026 change could prevent a few hundred to a thousand or more deaths per year worldwide. The actual number may be lower, both because whole blood is still prohibited and because modern blood-conservation techniques have cut transfusion requirements.

How many lives may have been lost in the 80+ years since the doctrine was articulated? Attempts to calculate that would be based on similar, though likely less reliable extrapolations.

So, while the September 18^th decision isn’t a wholesale abandonment of the blood doctrine, it is difficult to overstate its significance. This historic transfer of decision-making power from the church to individuals’ consciences eliminates a greater than 80-year source of conflict. The result of this change is an essentially instantaneous medical autonomy that’s religiously informed.

While the conflict will not disappear completely, for the millions of people who identify as JW, the range of acceptable (life-sustaining) treatments has changed dramatically. Depending on how JWs use their new personal discretion, the impact on future morbidity and mortality is likely to be considerable.

Rafael Escandon, DrPH, PhD, HEC-C is Vice President of Clinical Operations and Research Ethics at Cytokinetics, Inc.

Ian D. Wolfe, PhD, RN, HEC-C is the Director of ethics at Children’s Minnesota

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Earlier this month at a Hyrox competition in Beijing, China, Australian athlete Joanna Wietrzyk soiled herself … and continued competing. As a result of her decision to not leave the course, her fellow competitors found themselves exposed to her waste. The photos went viral. People from across the globe weighed in. Eventually came online abuse and death threats, prompting Wietryzk to issue an apology and forfeit her win. This decision, likely influenced by the backlash, was a reversal of her earlier position: “Go hard or go home,” she wrote in a since-deleted post, “a win is a win.”

Wietryzk’s words echo the same kinds of sentiments coming from many gyms and “fitfluencers” in the US. “Stay hard!” “Nobody cares!” “Ditch the excuses!” “No limits!” The ideology is clear: Having an Instagrammable body comes at a cost, and if you aren’t willing to pay that cost, then fitness isn’t for you. But the problem with this mentality is that paying too many of these costs can undermine the very goals some of us are trying to achieve.

While Wietryzk doesn’t deserve any of the abuse she continues to suffer, this episode, and her original cavalier response to it, have prompted long-needed conversations about the multi-billion-dollar fitness industry. Put simply: Is the fitness industry contributing to our health or undermining it? On the one hand, we could argue that Wietryzk doesn’t represent the fitness industry, as demonstrated by the fact that plenty of fitness folks criticized her decision to stay in the competition. On the other hand, we could wonder if these folks attempted to distance themselves from her because she let out the secret that a good chunk of the industry is premised on her “go hard or go home” mentality.

Fitness professionals and gyms have helped many people, including myself, so this article isn’t intended to dismiss an entire industry. I do, however, think the Wietryzk episode calls to mind certain problematic excesses of the Fitness Industrial Complex, and it’s in the interests of public health to critically reflect on these.

The Out-of-Control Costs of Pursuing Fitness

When we consider that most Americans fall below federal guidelines for aerobic activity, it does seem that the fitness industry is not serving most of us. This isn’t to lay blame at gym owners’ and fitfluencers’ feet, but it should prompt us to wonder if the industry is making itself unavailable to most Americans. While gyms like YMCAs and Planet Fitness offer affordable membership options, boutique gyms, CrossFit boxes, and various training clubs price themselves beyond the reach of many folks. Most of these spaces charge high monthly fees, and those only get you in the door. Once inside, you’ll be pressured to pay for expensive add-ons, like personal training, small-group training, and nutrition counseling. These price tags are increasing exponentially as mentorship programs saturate the market, promising gym owners easy paths to push their take-home pay to six figures. Add to this online coaching via social media platforms (coaches who usually ask you to disclose your income level when you apply for their services), and it’s not difficult to imagine that many people believe fitness is a luxury for the upper classes.

The creeping pharmaceuticalization of exercise

If accessing fitness professionals wasn’t already cost-prohibitive for many people, now imagine that some of them will push you to incorporate weight-loss drugs, supplements, and even testosterone into your fitness plan. Depending on your insurance plan, GLP-1 drugs might not be covered if they’re prescribed for weight loss. But in addition to cost concerns, we need to wonder about the risk of pharmaceuticalizing exercise. I’ve known male athletes in their 20s and 30s who take testosterone solely to achieve fitness goals. Also common in these elite fitness spaces is regularly tracking your biomarkers via bloodwork. Which leads to another troubling concern.

The willingness to constantly monitor your body

Health surveillance is increasingly normalized in many fitness spaces. It’s not uncommon for these folks to panic when their fitness tracker tells them they didn’t “recover” fully in their sleep. How they feel doesn’t matter. What matters is the data their devices and biomarkers give them. But unless they’re trained as a healthcare professional or scientist, they won’t be able to correctly interpret this data. What an athlete might believe to be cause for concern might just be a normal fluctuation to a physician. In fact, there’s a good case to be made that subjecting the body to constant surveillance might lead to anxiety and other mental health issues.

Disordered eating

In addition to surveilling their bodies, many of these athletes heavily surveil their own food by weighing everything they eat. While studies have demonstrated the health benefits of keeping track of one’s food intake, including keeping a food diary, there’s a point at which accountability crosses the line into obsession. There’s a wildly popular fitness influencer who tells people to “normalize” bringing their own food to social gatherings. To be fair, some fitfluencers criticize this advice, and offer their clients other “anti-tupperware” strategies for not falling off the nutrition horse in social settings. But whether you show up to Christmas dinner with Tupperware or limit your food intake the day before, the underlying issue is a potentially problematic relationship to food.

While the dangers of anorexia and bulimia have been made known, orthorexia hasn’t received enough attention. But there’s research to suggest that the latter is a problem among CrossFit populations. Being mindful of your food intake is one thing, but feeling bad about indulging, or avoiding social interactions because of the menu, or judging other people’s food choices is problematic. Humans are a meal-sharing species; eating delicious food together is not only one of life’s joys, but it’s a crucial element of bonding. Eating twelve ounces of protein and six pieces of asparagus alone while everyone sits in another room eating Thanksgiving dinner together is not healthy, no matter what a fitfluencer tells you. (Perhaps many fitness experts don’t take disordered eating seriously because many of them have never formally studied nutrition, which means they are unqualified to help their paying clients set and meet nutrition goals in safe, evidence-based ways.)

All of this suggests a certain mindset that has come to typify the fitness industry: that people who are serious about their health are willing to pay an exorbitant amount of money; that they will subject their bodies to surveillance and pharmaceuticalization in the attempt to look a certain way; that they will prioritize working out over hanging out with friends and family; and that they will hand over their bodily autonomy to fitness devices and food scales. If we aren’t willing to do this, the Fitfluencers tell us, then we aren’t serious about our health. No pain, no gain. Looking good isn’t free. Go hard or go home. A win’s a win.

Thankfully, some fitness professionals cultivate gyms and programs that actively push against these harmful ideas. But plenty of these well-intentioned folks still price out middle- and low-income people. What is needed, then, is a rethinking of fitness on the level of community health: how can neighborhoods be restructured to support aerobic movement and good nutrition? How can poor people who want to improve their fitness access affordable professional trainers? How can the fitness discourse become less elitist and narrowly focused on aesthetics? How can we get out the message that going hard and going home aren’t the only two options?

Brandon Ambrosino, PhD is an Assistant Teaching Professor at Villanova University and an Adjunct Professor of Bioethics at Loyola University Chicago.

The post Does the fitness industry pose a problem to our health? appeared first on Bioethics Today.

This editorial appears in the September Issue of the American Journal of Bioethics

The COVID-19 pandemic has been called “an illustration par excellence of globalization”. Today, the world is witnessing another global health crisis. This time, the source is not a virus, but rather the current U.S. government’s “America First Global Health Strategy”. Like the pandemic, America First poses global threats to health, requiring global responses. Both are of paramount concern for bioethics, because they endanger human health and challenge human values.

America First abruptly ended funding for global health initiatives, with the largest impacts in sub-Saharan Africa (hereafter ‘Africa’). The ongoing Ebola disease outbreak in East Africa serves as a grim warning: reduced global health funding is a recipe for disaster. It critically undermines disease containment and research for diagnostics, therapeutics, and vaccines. Public health experts and health workers on the ground report that the response to the Ebola crisis has been “significantly hindered by the near absence so far of the United States, historically the leader in any major outbreak”. “Ebola can be stopped,” says Georgetown University’s Director of the Center for Global Health Policy and Politics, “and if we don’t mobilize the dollars and the public health efforts, then we are simply choosing not to stop the outbreak”.

This editorial puts forth an alternative to the America First vision for global health. It looks beyond Western approaches to engage with values prevalent among African people, values we believe are compatible with many Western values. We focus on Africa for two reasons. First, the African region is among the most heavily impacted by America First. Second, ideas from Africa, and the Global South more broadly, are frequently missing from bioethics discourse. This reflects profoundly unfair patterns of disadvantage and power that arose during colonialism and continue today. Foregrounding non-Western approaches comprise part of a larger effort to decolonize global health.

AMERICA FIRST

When Donald J. Trump took office in January 2025, the U.S. was the largest funder and implementer of global health programs, providing approximately 12 billion dollars annually, an astounding amount, yet a relatively small slice of the total U.S. federal budget (1%) (KFF 2025(a)).

On his first day in office, the President withdrew from the World Health Organization (WHO) and the Paris Climate Agreement. He abruptly froze foreign aid, issuing a ‘stop-work order’ that immediately ended payments for services and work already underway. The White House then took a wrecking ball to structures and programs around the world designed to promote health and save lives. Among these are PEPFAR (the President’s Emergency Plan for AIDS Relief), credited with saving 26 million lives and enabling 7.8 million babies to be born without HIV infection since its inception in 2003 (KFF 2025(b)); UNFPA (the United Nations (UN) Population Fund) that pays for contraceptive care for an estimated 47.6 million women and couples annually; and USAID’s (U.S. Agency for International Development’s) Neglected Tropical Disease Program to reduce the prevalence of five major neglected tropical diseases that has delivered over 1.6 billion treatments to over 743 million people. All told, “the harm will be calculated in a fatality count that will very likely rise into hundreds of thousands, at least, and to millions if the programs are not restored. It is important to reflect on the sheer scale of this American carnage”.

The shift to America First overtly and brazenly turned health and development aid into extractive tools for increasing U.S. prosperity: “our global health foreign assistance… is a strategic mechanism to further our … interests around the world…We will first and foremost make America more prosperous…We will … leverage our foreign assistance to promote American companies and American innovations abroad, including continuing to procure goods from American companies as part of our foreign assistance programs”.

A SUBSIDIARY APPROACH

The U.S. retreat from global health need not result in a Hobbesian world in which “might makes right and winners take all…a far more violent and unstable world for all of us”. It should instead prompt a reckoning. Now is the time to put forward new ways of thinking about global health. Some global health challenges require international cooperation at the highest levels of national governance. Yet, for much of global health, the focus is narrower; what is needed is a decentralized strategy, driven not only by outside funders, but also by recipient nations and communities within these nations. This approach finds expression in a principle of subsidiarity. An idea with ancient roots, subsidiarity’s guiding notion is that the burden of argument lies with those who seek to consolidate power or authority. Subsidiarity favors “a rebuttable presumption for the local” that begins from the default position that a lower level can address the underlying issue effectively. For example, subsidiarity recommends enabling individuals, families, neighborhoods, and local communities to effectively identify solutions and address problems, and only when they cannot, calls upon municipal, federal or other higher-level groups. While local communities can be corrupt and require reform, they are arguably no more prone to corruption than authority at higher levels. Moreover, the subsidiarity presumption favoring the local is rebuttable; it does not demand deference to the local under all circumstances.

Subsidiarity enacts values of non-abandonment, “when the lower-level/small community is unable to meet its goals on its own,” aid is offered; non-absorption, or honoring “the legitimate freedom of the lower-level/small community;” and coordination according to closeness to an afflicted group and the problems they suffer. A subsidiarity strategy decolonizes global health by empowering local people and communities. For example, it keeps “global level staff as technical advisers and coordinators rather than decision-makers;” ensures decision-makers have minimum “local intelligence” based on factors like years lived in a region, fluency in a local language, or longer-term collaboration; and follows “the lead of the affected communities in the assessment of their problems”. A principle of subsidiarity must be a core feature of bioethics for global health.

AFRICAN VALUES AND GLOBAL HEALTH POLICY

Following a subsidiary approach, we emphasize values in the African region, where America First has had its greatest impact. The Global Presidential Council launched by Ghanaian President John D. Mahama with other leaders from the Global South offers a promising start. “It is indeed right that the global south should take the lead, for it is in these countries that the collapse of the old world model will be felt most acutely, and it is from our innovation that the world can find new answers and solutions,” Mahama told the UN General Assembly. The so-called ‘Accra Reset’ Mahama is spearheading calls for rethinking ‘development’ to ensure nations are not passive recipients of aid but partners with local ownership, investment, and leadership. While U.S. global health aid improved health, it is frequently faulted for failing to enable countries to assume control over systems.

Africa’s Centers for Disease Control and Prevention (CDC) has put forth a strategic plan for transitioning the continent to health sovereignty, defined as “the ability of African nations to finance, produce, and govern their own health systems and countermeasures”. The proposal builds on the new public health order created in the wake of the COVID-19 pandemic, which sought to strengthen the continent’s health institutions, workforce, manufacturing, domestic financing, and partnerships amid concerns about the fragility of international cooperation when the world is collectively threatened. The WHO Africa regional office has adopted a framework to scale-up production of medicine, vaccines, and other health technologies and set targets and milestones to achieve this. Also notable is the Lusaka Agenda, a multi-stakeholder engagement that recommended strengthening primary healthcare; building sustainable, domestically financed health services and public health programs; and expanding regional manufacturing to ensure products are affordable and feasible for people in underserved regions.

Notwithstanding formidable challenges, the time seems right for transitioning to health sovereignty and inviting international partnerships that align with this vision. While calls for greater agency are not new, the geopolitical headwinds facing African and other developing countries are. Health initiatives across the Global South attest that this vision is broadly shared.

Realizing health sovereignty requires that the values underpinning global health initiatives align with values prevalent in regions where these initiatives are being implemented. A promising framework to draw on is the proposed Africa-centric research ethics framework that is “based on contextual understandings of African settings, values, virtues, cultures, and socioeconomic profiles of the region”:

In addition to the existing international research ethics principles, the Africa-centric research ethics framework will consider key attributes such as solidarity (altruism, reciprocity, and collective responsibility), friendliness (interdependence, interconnection, and respect), and social justice (equitable allocation, moral responsibility, holism, hospitality, and acceptability).

To elaborate these values, we consider prominent sub-Saharan African indigenous understandings of solidarity that incorporate key aspects of the ideas listed here.

While diverse, African philosophy frequently describes solidarity as ubuntu (humanness). Ubuntu indicates both the existential fact that human beings are interconnected and interdependent, and the ethical imperative to treat those with whom one is interconnected well. These ideas find expression in pithy sayings such as “a person is a person through other persons”, and “I am because we are, and because we are, therefore I am”. Ubuntu conveys a recognition that ‘when you do well, I do well.’ A solidaristic approach to global health commits the field to supporting all members of a group while leaving no one behind. Rather than focusing only on benefitting the most, solidarity tempers aggregative reasoning by considering the interests of each individual and group impacted by a decision. It commits global health to health equity and putting the furthest behind first. It upholds the value of nondomination by rejecting geoeconomic strategies that bully and exploit economically vulnerable groups to promote national interests. It advances dignified lives and health capability, rather than the unconstrained pursuit of extraction by powerful nations. And it can help form an ethical scaffolding for the next generation of global health values.

Solidarity often begins at the grass roots level, as a response to atrocities in our midst. Responsive solidarity involves people joining together to overcome a common foe, often during a crisis where there is rampant suffering or assaults on human dignity. In African nations, responsive solidarity might take the form of responding collectively to America First by insisting on negotiating as blocs by means of regional organizations such as the African Union, African Medicines Agency, or Africa CDC. Through collective diplomacy, African nations could strengthen their bargaining power, allowing them to define clear redlines and reject conditionalities that undermine health sovereignty.

While responsive solidarity is a potent force and has made lasting contributions, its lifespan is limited. Once an immediate health threat subsides, alliances may weaken or disband. To be sustainable, solidarity must run deeper. Deep solidarity is an ongoing response to the humanity of others. It sustains bonds of affection with others during ordinary, as well as crisis, moments. It gains a foothold early in life—”solidarity starts from the household and radiates outward to the lineage and, with some diminution of intensity, to the clan, at large. The normative meaning of this bonding, for an individual, is that she has obligations to large groups of kith and kin”. The starting point for deep solidarity can also be a relational self, “not ‘I’ and what I may owe to others, but ‘we’ and how we can flourish. This relates to a deeper understanding of our being…[as] inseparable and web-like”. Unlike responsive solidarity, which is prone to creating ‘in’ and ‘out’ groups, deep solidarity is less prone to such exclusions. While ‘familial ties radiating outward’ can generate differential commitments based on proximity, deep solidarity emphasizes common humanity, underscoring the moral equality of persons.

3. Justice and Nonmaleficence. Even if health sovereignty and solidarity are key values for African nations, when U.S. taxpayers fund global health programs, aren’t U.S. values relevant? In response, a powerful argument can be made that America First fails to uphold core tenets of American bioethics, especially justice and nonmaleficence.

U.S. policy flagrantly violates justice principles and any credible conception of a human right to health or healthcare. Diverse justice views commit to pursuing health equity, prioritizing the least well-off, and advancing dignified lives. Principles of structural justice foreground nondomination, non-exploitation, and fair power relations.

America First also contravenes nonmaleficence, a principle that “obligates us to abstain from causing harm to others;” and “above all [or first] do no harm’”. Abruptly ending global health aid left large numbers of people without access to essential health services previously guaranteed. It undermined collective mechanisms, such as the WHO, that low-resource settings rely on for essential services, further straining fragile health systems. Sudden termination of programs led to extraordinary near-term suffering and death.

CONCLUSION

America First is an ethical disaster. Its crass, ethically unjustifiable aims cannot stand. Bioethics must expand beyond the West. A principle of subsidiarity is key to that expansion.

Nancy Jecker, PhD, Vardit Ravitsky, PhD, Ruth Faden, MD, PhD, Walter Jaoko, MBChB, PhD, PGD, Jonathan Moreno, PhD, Michael Parker, PhD and Kevin Behrens, DPhil

The post How “America First” Abandoned Global Health: The Case for an African Model appeared first on Bioethics Today.

This editorial appears in the September Issue of the American Journal of Bioethics

Liougas et al.’s composite case study analysis of real-time location systems for dementia care in a residential care home setting highlights the ethical problems that follow when a technical system is introduced without a clear and collectively shared purpose. Despite the growing consensus that decisions about technology design and implementation should be informed by the perspectives of people with dementia and caregivers, in the case study, neither tool developers nor care facility leadership envision dementia patients and caregivers as vital sources of input; in fact, they do not appear to have consulted caregivers or people with dementia. As a result, care facility leaders and other stakeholders were poorly positioned from the outset to determine whether the technology supported the needs and priorities of patients and caregivers. While concerning in any dementia care setting, the absence of patient and caregiver perspectives becomes all the more consequential in the context of AI-enabled technologies. On the one hand, AI practitioners and dementia researchers describe the potential of AI to transform dementia care—for example, by supporting clinical decision-making and differential diagnosis, promoting earlier detection and care planning, and facilitating remote monitoring. On the other hand, AI’s rapid development and capacity to reshape established boundaries and norms risk outpacing our collective ability to perceive its longer-term consequences.

A rigorous approach to AI ethics in dementia care therefore requires sustained engagement with patients and caregivers throughout the technology lifecycle. Such engagement can help resist epistemic injustice by countering the systemic devaluation of the knowledge and expertise of people whose perspectives are marginalized. A user-engaged approach is also consistent with recommendations that people with dementia participate in technology design and research, either independently or with caregiver support, to help ensure that tools reflect and respond to patient and caregiver needs. Moreover, Wang et al. identify a recent increase in the inclusion of people with moderate- and later-stage dementia in technology design processes. Efforts to establish best practices for co-design—that is, designing AI tools in sustained collaboration with users—in dementia contexts remain nascent. Despite calls to involve people with dementia throughout the AI lifecycle, their participation in technology design and research often remains limited to one-off consultations or user testing sessions rather than sustained engagement.

We recognize that the issue of how to elicit and understand input from dementia patients is by no means a settled matter. That is, drawing on dementia patients’ input to inform the design and implementation of dementia care technologies is at once ethically essential and ethically fraught. Accordingly, in what follows, we: 1) offer a practical overview of what a user-engaged ethics approach to designing and implementing dementia care technologies might look like across multiple stages of the technology lifecycle; and then 2) explore how theoretical uncertainty about interpreting technology user input in the context of dementia care poses significant challenges, but should not dissuade us from pursuing the vital work of engaging the perspectives of dementia patients and caregivers.

USER INVOLVEMENT ACROSS STAGES OF TECHNOLOGY DEVELOPMENT

Figure 1 describes how prospective users with dementia and caregivers can be engaged at 3 stages of the AI development life cycle. The figure briefly highlights considerations pertaining to value elicitation and interpretation that will be explored more fully in the following section.

Figure 1. User involvement across stages of AI tool development for dementia care.

Adapted from Dankwa-Mullan et al.

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Identify or Reassess Needs, Values, and Desired State of Care

Technology design, like care decisions, should be aligned with user values and priorities, requiring engagement with people with dementia and caregivers to understand their own values and priorities, as well as any overlap or tension between these values. Beyond brainstorming more efficient and cost-effective alternatives to existing modes of care, engaging prospective users from the earliest phases of design provides an opportunity to think creatively about if and how technology could be harnessed to promote autonomy and connection: for example, devising a technological tool that facilitates connection between people living alone with dementia and human carers, companions and communities. Additionally, a human-centered (rather than a technology-centered) approach would include entertaining the possibility that a lower-tech solution may be more appropriate to needs and values, keeping in mind that anticipated time and cost savings may not always materialize in real-world dementia care settings.

Iteratively Develop AI Tool

AI co-design involves iteratively refining tools in response to input from prospective users, especially for users with dementia who may have needs for comfort and accessibility that AI developers without cognitive impairment may not anticipate. Also, eliciting input on an early prototype is an opportunity to identify misalignment or resonance between the values of caregivers and of people with dementia. For example, through a participatory design process, one team learned that a safe walking device resonated with both the value of autonomy to people with dementia and caregivers’ commitments to safety and risk reduction. Proponents of co-design centering people with dementia also stress the importance of allowing people with dementia to test a proposed tool in their everyday routines and inform refinement of tool design, recommending supportive measures such as keeping co-design and testing sessions short to minimize fatigue, including facilitators who can promote understanding between stakeholder groups, ensuring adequate transportation, and taking time to build a comfortable, lighthearted atmosphere among participants.

Implement Tool and Monitor its Performance

To promote ethical implementation of AI tools, input from people with dementia could inform the design of consent/assent processes and help craft appropriate explanations of tool purpose and function. Additionally, ongoing monitoring is especially vital in AI tools for dementia care. The performance of AI tools may decline over time as inputted data increasingly diverges from the data on which the tool was trained. Users’ cognition will also change over time. A broadened conception of monitoring would go beyond technical evaluation and maintenance to include ongoing consultation with users to see if the tool serves evolving needs, if new adaptations or supports are needed, or if the tool is no longer appropriate. Such a process would offer people with dementia opportunities to exercise agency regarding their care beyond the narrow scope of consent and assent.

INTERPRETIVE CHALLENGES AND EPISTEMIC INEQUITIES

Co-design, while vital, has the potential to reinscribe the epistemic inequities that it is often designed to subvert. Critical voices in the field of neurotechnology highlight ableist assumptions and systems that can undergird, or be reinforced by, the extraction of user feedback without concrete benefit, lack of accountability for tech-based harms, subtle devaluing of “lived experience” expertise and failure to adapt community engagement processes to the needs of users and advocates.

Dementia may introduce additional challenges to harnessing co-design to promote epistemic justice. One such challenge pertains to the interpretation of user values. It is important to note that expressing our values is difficult even without cognitive impairment; one reason for this is that values may be so embedded in our sense of the world and ourselves that it may sometimes be difficult to bring them to conscious awareness or express them in language. People with dementia will struggle more than most to articulate their values verbally, and nonverbal expressions of emotional states like distress are open to interpretations ranging from mere noncompliance to principled objection. Interpretations in either direction, if not tempered by humility and genuine curiosity, may produce the kind of erasure of people with dementia’s perspectives that commitments to both epistemic justice and technology co-design resist. Tendencies to embrace one extreme or the other recall anthropologist Lawrence Cohen’s concept of “ironic listening”. Ironic listening means attending to people with dementia without either reducing their expression to mere “babble” or seeking the deep, hidden truth in their statements or actions. It evokes the hard work of self-reflection and attunement that is required to avoid either over- or under-determining meaning.

We are navigating this interpretive challenge and reflecting on our own epistemic authority in our ongoing research, which aims to elicit the personal values of people with dementia, explore if or how values change over time, and understand the impacts of potential value change on caregivers. We endeavor to investigate the impact of neurogenerative disease on valuing without recourse to ableist frames that conflate divergence from normative modes of expression or social engagement with loss of or disengagement with values. There is no step-by-step guide to ironic listening. But in our experiences interviewing people with dementia and their caregivers, often in their homes, we have found it useful to engage with people with dementia through multiple communicative modalities and affective registers. For example, we learn about treasured objects and attend to moments of joy, which can often be indicative of values.

In technology design and implementation, institutional incentives may make such open-ended, time intensive value elicitation difficult. Both community engagement and value exploration take time. Indeed, accounts of co-design involving people with dementia emphasize the importance of building comfort and an atmosphere of ease to ensure a positive experience for dementia patients with varying needs. This may be misaligned with the “move fast, break things” ethos of technology and AI innovation. Even beyond private industry, public institutions and academic medical centers often face pressure to push innovation, and ethical deliberation may be constrained, de-emphasized or reduced to legal compliance.

The design and implementation of digital tools may also expose value misalignments between people with dementia, caregivers, healthcare professionals, and developers. A newly developing literature on community-engaged health AI development provides practical guidance for eliciting multiple stakeholders’ values regarding a tool, but guidance for adjudicating value conflicts is lacking. It is difficult in any domain to adjudicate value conflicts without conferring preference to those who possess more conventionally legible forms of expertise or institutional status. Cognitive impairment from neurodegenerative disease, and resulting communication difficulties coupled with interpretive challenges, may amplify the temptation to privilege technical considerations or institutional priorities over user concerns.

AI co-design in dementia will pose serious interpretive and conceptual challenges. The problem of responsibly interpreting the verbal statements and nonverbal expressions of people with dementia carries particular ethical weight, as even well-intended efforts to amplify their voices may instead inadvertently silence them—a danger we recognize and continue to grapple with in our own research. Still, in our view these challenges cannot be evaded if new digital technologies are to fulfill their promise to improve care for people with dementia and their caregivers in ways guided by their own values.

Juliana Friend, PhD, Valerie Black, PhD, and Winston Chiong, MD, PhD

The post AI Use in Dementia Care Requires Engagement with Patient and Caregiver Perspectives appeared first on Bioethics Today.

This editorial appears in the September Issue of the American Journal of Bioethics

Artificial intelligence (AI) is increasingly embedded in all aspects of clinical care, shaping how clinical information is gathered, notes are produced, and judgments are formed—often invisibly, and rarely disclosed to patients. Where disclosure does occur, it is typically procedural—a checkbox or boilerplate acknowledgment—rather than a substantive communication that informs deliberation and supports autonomous choice.

Informed consent is the legal and ethical architecture undergirding the doctor-patient relationship and is the mechanism through which autonomy is recognized and protected. The foundational assumptions of the informed consent doctrine are historically built around interventions that are bounded and stable at the moment of authorization, with a relatively fixed risk-benefit profile and a temporally discrete authorization at a specific point of care. Standard informed consent doctrine also presupposes that a clinician can describe a proposed intervention with sufficient clarity so that patients can understand it well enough to choose freely and deliberately. With the introduction of AI into the doctor-patient encounter, that presupposition is now imperiled.

We believe that genuine informed consent in AI-mediated clinical care is highly difficult for two reasons. The first is invisibility: AI is often embedded in the ambient clinical infrastructure in ways that are largely unavoidable and unseen by patients. The second is dynamism. Clinical AI systems are subject to model updates, recalibration, and expanded deployment, such that the AI employed at an initial medical encounter might bear little or no meaningful relationship to the AI a patient is subsequently exposed to. In response, herein we argue that in the era of clinical AI, the one-time authorization model for informed consent is no longer ethically defensible and that going forward health systems should instead implement a redesigned continuous, two-pronged consent architecture built around two coordinating principles: visibility and temporality.

INVISIBILITY: AI AS AMBIENT CLINICAL INFRASTRUCTURE

The invisibility problem arises when AI shifts from an optional decision-support to infrastructure embedded at the institutional level. Such embedding spans scheduling, triage, risk scoring, documentation, and language translation. This transforms the moral stakes: patient exposure to AI is no longer a discrete, traceable event but something ambient, passive, and often unavoidable.

Ambient AI scribing systems exemplify this form of infrastructural invisibility, given that they often operate in the background of clinical encounters and capture conversations, perhaps unbeknownst to patients. Even when disclosure is provided, clinicians might be ill-equipped to inform patients about all of the potential negative ramifications of having AI serving as a scribe to their encounter. Moreover, if clinicians are able to inform patients, patients typically are unable to opt out of AI in their clinical encounters without risking disruption to their own care. Furthermore, ambient scribes are frequently retrained on accumulating clinical data and updated post-deployment, such that their outputs increasingly shape clinical documentation, billing, and downstream medical decision-making over time.

When meaningful opt-out options are not available, patients may face soft coercion to accept the use of AI, driven by concern about losing access to care. One significant risk posed by this invisibility is the potential compromise of patient confidentiality. Sensitive health data may be exposed to systems whose cybersecurity protections are not equipped to keep pace with rapidly advancing computing power. This raises a fundamental concern: at what point does the pervasiveness of AI transform informed consent from a mechanism of genuine patient agency into a largely symbolic administrative hurdle?

DYNAMISM: LIFECYCLE AI AND THE TEMPORAL BREAKDOWN OF CONSENT

Clinical AI is defined by temporal instability: it is a dynamic, evolving sociotechnical system, subject to continuous change in ways that no single moment of consent can capture. Change over time is an intended feature of many AI deployments, allowing for fine-tuning and recalibration that alters performance characteristics, error distributions, and clinical behavior. These changes occur post-consent and almost always without patient awareness (see Figure 1).

Figure 1. Medical AI system transformation.Show detailed figure description

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AI-mediated mental health tools that are currently employed provide a particularly clear example of this temporal instability. These systems adapt their response strategies and intervention styles through model updates and ongoing optimization. However, despite their ever-evolving nature, informed consent is still generally offered at the point of initial use, with no mechanism to alter or update consent over time.

Clinical AI systems change in at least four distinct ways: model dynamism, contextual dynamism, relational dynamism, and normative dynamism (see Figure 2). They are described as follows:

Figure 2. Four types of dynamism.Show detailed figure description

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Model dynamism refers to the continuous fine-tuning of clinical decision support tools, which can introduce new error modes, biases, or failure conditions over time. Because valid informed consent requires that a patient authorize a specific intervention with known characteristics, each substantive update to a deployed system effectively changes what was consented to, altering the system’s underlying reasoning, risk calibration, and failure profile.

Contextual dynamism refers to shifts in environmental and population-level deployment, where changes in patient demographics, disease prevalence, or clinical setting can alter model validity and safety. As such, consent given in one deployment context may not meaningfully extend to another.

Relational dynamism describes the change in the clinician-AI relationship over time, given that the clinician’s use of and trust in AI outputs can, and likely will, evolve over time.

Normative dynamism describes how institutional norms and professional guidelines about the use of AI in clinical encounters may change over time, likely increasingly incorporating AI outputs as default practice, pressuring patients and clinicians into AI-mediated care without explicit re-consent.

Each form of dynamism can reshape the meaning of initial consent, such that even when the original disclosure was thorough and procedurally sound, subsequent changes in AI systems may render that consent ethically inadequate. Taken together, these forms of dynamism mean that the consent obtained at one point in time often no longer accurately describes the intervention patients might receive later. If we ignore this reality, informed consent becomes little more than a legal fiction rather than a truly ethical practice.

LIMITS OF CURRENT RESPONSES

Although certain aspects of AI operate as a “black box,” merely disclosing this fact is insufficient to render patients truly informed. The broad consensus across the bioethics community is that explaining AI models does not reliably translate into patient comprehension of how AI meaningfully shapes their care. Consent-relevant understanding should focus on the role AI plays in decision-making, how its output is used by clinicians, what kinds of errors it is known to make, and what alternatives the patient has. Regarding dynamism, researchers routinely reference adaptive systems, model updates, continuous improvement pipelines, and empirical drift in real-world performance. However, the literature seldom specifies concrete thresholds for when technical change becomes ethically significant enough to require renewed disclosure.

Researchers have found that patients’ expectations of disclosure are not tied to a technical understanding of how AI works, but rather to disclosure of when AI meaningfully shapes diagnosis, prognosis, triage, or treatment recommendations. Patients also draw a distinction between notification and consent: being informed that AI is being used is not the same as being asked for permission to use it. For example, a patient may agree to AI being used to help schedule appointments but may wish to opt out when AI is being employed to render a cancer diagnosis—wanting notification in both settings, but formal consent only in the latter. Additionally, patients want to know who can view, store, analyze, sell, or repurpose their conversational and clinical data, centering their concerns on governance, power, and downstream use.

These concerns indicate that informed consent for AI must include disclosure about data flows, retention, access, and secondary uses. Patient values are oriented toward control, dignity, and informational autonomy rather than technical interpretability of the underlying model.

REGULATORY CONTEXT AND SHORTCOMINGS

Major regulatory bodies already impose meaningful transparency, safety, and governance requirements on clinical AI. These entities prioritize regulatory compliance over meaningful patient consent—a gap that is particularly pronounced in the context of dynamic AI systems.

AI transparency requirements are largely upstream and institutional rather than patient-facing, even though regulatory frameworks already conceptualize AI as dynamic and lifecycle based, requiring ongoing monitoring, post-market updates, and recalibration. But even with this recognition at the regulatory level, clinical consent is still treated as a one-time event at the point of initial deployment.

This produces a decoupling of institutional accountability: AI systems may be fully compliant with regulatory transparency requirements while patient-facing informed consent remains shallow, outdated, or absent. Moreover, even where procedural compliance is achieved in clinical settings, it does little to produce actual patient understanding, deliberation, or agency, rendering such compliance functionally meaningless in AI-mediated care.

REDESIGNING CONSENT: A TWO-PRONGED ARCHITECTURE FOR CLINICAL AI

To bring informed consent into the AI era, we argue that a new model is necessary, one that includes continuous, iterative consent, treating it as an ongoing relationship between patient and institution, evolving in response to meaningful changes in the system in use. Importantly, implementing this new model of consent cannot be left to individual clinicians; instead, hospital systems and health care organizations should be responsible for designing, implementing, and maintaining consent practices that embody these two prongs.

This reframing entails three concrete normative commitments. First, substantive model updates—those that materially alter risk distribution, error profiles, or decisional authority—should trigger a new consent process, on par with a new clinical intervention. Second, consent should focus on the AI’s role in clinical decision-making—how it shapes care—while model iteration remains a secondary, auditable factor. And third, when new risks or biases are identified in a deployed system, institutions bear an affirmative obligation to notify affected patients and offer them a meaningful opportunity to revisit their consent.

To carry this out, we propose a two-pronged framework to address both invisibility and dynamism:

Prong 1: Decision Architecture Visibility targets the moment of care and requires that patients be informed (1) that an AI system is involved in clinical decision-making; (2) what functional role it plays; and (3) whether the AI output is subject to clinician review or operates with effective autonomy in the workflow.

Prong 2: Post-Encounter Data Governance operates downstream, given that consent ought to be treated as a continuous obligation over time. It requires separate, explicit disclosure covering (1) whether patient data will be retained beyond the encounter; (2) whether it may be used for model training or secondary analysis; and (3) which third-party vendors, if any, have access to the data, no matter whether those data are de-identified or not.

The importance of maintaining the separation between these two prongs is nicely illustrated in the case of ambient clinical scribing. For example, a patient may reasonably accept AI-assisted documentation during a visit while objecting to indefinite storage of that conversational data, its use in future training sets, or its transmission to an external vendor. Collapsing these two prongs into a single consent moment does not do justice to choices that patients should be entitled to make independently. In addition, we believe that re-disclosure ought to be required if and when any of the following occur (see Figure 3

):

Figure 3. Triggers for updated consent.Show detailed figure description

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Material changes in model performance: a significant shift in sensitivity, specificity, or calibration in a clinically relevant subgroup – for example, a diagnostic algorithm whose false-negative rate increases substantially in an older patient cohort after retraining.

Expanded scope of deployment: use of a model beyond the population or clinical context for which it was validated – for example, applying an imaging model validated on adult patients to pediatric populations.

Shifts in decisional authority: a change in AI functional role in the care workflow – for example, a transition from a model requiring active clinician override to one in which AI output is accepted by default unless a clinician intervenes.

These triggers are necessary in order to prevent the silent erosion of consent as systems evolve beyond what patients originally authorized. Patients should have the right to decline AI-mediated care where clinically feasible, without penalty in terms of access to care or quality of care. If opting out leads to longer wait times, reduced access, or lower diagnostic support, the choice is not truly voluntary.

CONCLUSION

In conclusion, informed consent for clinical AI will fail unless it is designed to make AI both visible and responsive to changes over time. When AI is embedded in clinical infrastructure without disclosure, patients cannot form meaningful awareness of how AI might be influencing their care. At the same time, because AI systems continue to evolve after initial disclosure, patients are inevitably exposed to a different intervention than the one to which they originally agreed. The two-tier consent architecture we propose—built around tiered patient rights and temporal triggers—recasts informed consent as an implementable design obligation for medical institutions, regulators, and health systems. The responsibility to implement these consent systems should rest primarily with those institutions and regulators, not with individual clinicians who generally lack control over AI deployment and infrastructure. Such a redesign would allow institutions to respect patient autonomy while enabling patients to benefit from clinical AI in ways that they have genuinely authorized.

Given that AI-mediated care is here to stay, the changes we are advocating for are not optional; instead, they are essential if patients are to be truly informed about their medical care going forward.

Marina Hovhannisyan, and J. Wesley Boyd, MD, PhD

The post Informed Consent in the Age of Clinical AI: Beyond the One-Time Authorization Model appeared first on Bioethics Today.

This editorial appears in the September Issue of the American Journal of Bioethics

In Moore et al.’s article, “What Can We Ask of Hospitals? Conceptual Foundations for an Ethics of Healthcare Organizations,” the case is made that health care organizations have an ethical obligation or prima facie duties to their patients over and above the obligations of clinicians and staff. To better understand the role and responsibilities of health care institutions, we believe it is worthwhile looking at the historical context in which hospital-based care arose as part of the US health system.

Before the 1940s, hospitals and health care systems were a true rarity until Congress passed the Hill-Burton Act in 1946 which provided federal funding for the construction and modernization of hospitals and other health facilities. Up until this point, medical care was largely provided by individual physicians rather than large health care systems. This legislation led to the dramatic expansion and creation of hospitals nationwide. The argument made for this support was primarily in terms of the impact of hospitals in improving health to the communities in which hospitals reside. Eventually, this obligation would lead to a commitment for hospitals to provide access to health care at little to no cost to patients. As of 2023, 127 health care facilities across the United States remain obligated to provide care despite the cessation of funding in 1997 (Hill-Burton Free and Reduced-Cost Health Care | HRSA 2023). In 1986, Congress passed the Emergency Medical Treatment and Labor Act (EMTALA) to ensure hospitals offered public access to emergency services and were “required to provide stabilizing treatment for patients with an emergency medical condition” within its capability regardless of an individual’s ability to pay. Law makers recognized the inherent duty of hospitals and health systems to attend to the health and well-being of their communities. As Pope (this issue) argues in his commentary, this is partly why there is even more regulatory oversight of hospitals and health systems than of individual clinicians.

While Moore et al. argue that hospitals and health care organizations have obligations to individual patients, they perpetuate the traditional ethos of medicine as a fundamentally dyadic relationship between clinician and patient. They seem to extend this dyad from individual clinicians to the institution as a whole and analogize the relationship to recognize similar potential for benefit and harms from institutions over and above the harms and benefits caused by individuals, hence treating institutional obligations similarly to those of individual clinicians. But the historical origins of the push to “hospitalize” health care was built on a very different ethos, one grounded in obligations to communities, not merely individuals within that community. In short, the other side of the dyad also needs to be reconfigured if we are to move beyond the patient-clinician relationship.

Examples of this way of thinking about obligations can be seen in debates that academic hospitals have about the potential tradeoffs between providing care (even routine care) in their immediate communities versus taking on more acute, complex or “interesting” patient cases from outside the area. This is a particularly important issue and fraught calculus for academic medical centers (AMCs). The moral and ethical issues present in these debates will be invisible to a focus on harms to individual patients and bioethics has not done enough to address these issues (though hospital ethics committees sometimes are involved in these discussions).

Another example of the need to recognize the moral salience of the community has arisen over drug shortages and expanded access programs for in-demand therapies. When Spinraza was first developed and shown to be effective for slowing or stopping progression of SMA1, but prior to FDA approval, there were expanded access programs set up at a small number of sites where the trials for the drug had taken place. This led to discussions about the degree to which priority ought to be given to patients with established relationships with the institution. Again, this type of moral consideration—the prima facie obligations we have toward existing patients or to patients in the immediate vicinity and how to consider tradeoffs with other relevant values or duties is important work taken up by many hospital ethics committees and by bioethicists. Yet this issue will not be fully captured through a lens that focuses strictly on harms to individuals. This same debate has recurred over considerations around the ethics of allocation of drugs during drug shortages. Relative weighting of existing patients within the health system, geography, equity, and need have all been part of the moral tradeoffs that institutions grapple with–-often with help from their ethics programs. Some institutions have used community engagement as part of a process of ethical decision making for developing policies around allocation.

One final illustration of the need to consider communal duties over and above obligations to individuals can be seen in the literature on the learning health system. Kass and Faden argue that the Learning Health Care System (LHCS) requires three “respect promoting” actions that institutions are obligated to undertake for an ethical justification of the learning health care system. Two of these obligations are communally directed with one having an explicit duty to engage in a process involving community engagement for priority setting within the LHCS and a second duty to the accountability to develop improvements in the care of the community the institution cares for. In short, both obligations are best understood in terms of institutional duties and harms to the community they serve, and focusing solely on harms or benefits to individuals may miss that it is relevant which patients are impacted as well as the process itself.

Unfortunately, hospitals and health systems have often failed to meet their communal obligations. LHCSs often fail in adequately engaging impacted communities in their policy creation and priority setting. Scarce resource allocation policies and processes may fail to adequately include members of affected communities in the planning process. Perhaps most seriously, many AMCs do not provide care for underserved members of their community. Hospitals may have various ways in which they fulfill this obligation-division of labor within a quaternary hospital system taking high acuity patients from around the country while transferring lower acuity patients to an affiliate hospital that serves the hyperlocal community. However, EMTALA still guarantees that no unstable patient will be turned away who requires treatment. While some degree of rationalization of resource allocation is appropriate, it is a moral failing when members of underserved and under-resourced local communities do not feel welcome at AMCs. There are often cultural, social, and geographic obstacles that prevent these patient populations from seeking out or receiving care at AMCs. This rationalized system where under-resourced populations get care at community hospitals and only transfer to a higher acuity level of care at AMCs may systematically fail part of the community in which AMCs reside.

We have experience helping to address all the issues discussed above at our institution. One of the standard requests we make when involved in institutional initiatives surrounding decision making and priority setting is to include community representation. This is undoubtedly a heavy lift, but perhaps knowledge and experience in community engagement should become an essential tool for clinical ethicists engaged in organizational ethics work. We appreciate Moore, et al.’s attempt to move us from a strict dyadic ethos of the patient-clinician relationship to recognizing that institutions themselves can cause harm or benefit to patients and therefore have duties over and above the duties of clinicians. However, we believe they do not go far enough in recognizing that some of the duties and obligations of institutions are not just grounded in harms and benefits to individuals but also to the communities that hospitals were created to care for.elieve; rather, it is rampant elite ableism that is the true epidemic. In fact, one could argue that an ableist classism has animated much of the policy decisions to eliminate vaccine recommendations—tools that in the absence of a universal health care system have greatly benefited marginalized groups. The tools and language of public health would be better applied in preventing and reducing the burden of this narrowmindedness rather than being bastardized to promote harmful, dangerous, and bigoted ideology.

Kate Luenprakansit, MD, HEC-C and David Magnus, PhD

The post Beyond the Institutional Dyad: Healthcare Organizations and Their Obligations to the Communities They Serve appeared first on Bioethics Today.

This statement, often said with a slight tilt of the head, and an all knowing, all too confident smirk, and raised eyebrows will undoubtedly be raised at some point when members of my Black family are discussing topics in current events—a man with a large gun swung across his back and another on his hip, arguing with police officers, a child shoplifting from the local convenience store whose only punishment is to apologize to the store owner, a child hitting his teacher and just sent home for the day with no other consequences. I know other Black families have these conversations, and I see it in the comments on social media posts. Sometimes an emoji written under a post or a shared look between two Black people is enough to communicate, “We all know what would of happened if she were Black” without any words at all, because we know.

“We all know what would of happened if she were Black,” is born from our own experiences as Black Americans, the experiences of other Black people that we’ve witnessed, and our acute understanding that people of color, particularly the every day, non-celebrity Black person are not typically forgiven for wrongdoing. We are not shielded from the legal consequences of misdeeds in the ways that white people tend to be. Black people often don’t get to escape consequences for misdeeds, intentional or unintentional.

Sometimes non-Black people will challenge this sentiment with, “Well, how do you know?” This question challenges our epistemic authority over our lived experience—it is asking us to prove what we know and what we see with our very eyes, and what anyone paying attention ought to be able to see as well. But sometimes an example comes along that doesn’t force us to prove what we know, what we’ve always known. Instead, “We all know what would of happened if she were Black” is displayed for everyone to see.

Latarsha Sanders, a Black woman sentenced to prison for killing her two children, is currently on display for us to watch, partially because of Lindsay Clancy, a white woman on trial for also killing her three children. Their mental health status is showing up in very different ways in their cases, forcing us to consider how race, views of criminality among Black people, and mental health intersect in our legal system.

I am not a legal scholar, so I offer no opinion on the purported crimes of Latarsha Sanders and Lindsay Clancy. I do, however, notice instances of violations of a basic Aristotelian idea of justice—to treat like cases alike—or the idea that when in a similar situation, people should be treated similarly.

Both Sanders and Clancy had the same judge, Judge William F. Sullivan, presiding over their cases in the same Massachusetts courtroom. Both women were charged with murder by the same district attorney. Both women were charged with murdering their children. And both Clancy and Sanders’ defense argued that the women were not criminally responsible for killing their children due to their mental health state.

In Clancy’s case, her mental health records were allowed to be a part of her defense, who argued that she suffered from postpartum psychosis, which contributed to her criminal actions. Sanders, however, was not seeking mental health care before she killed her children. Though during her trial, family members attested to her erratic behavior and fears that a secret society was trying to harm her and her children. After her arrest, Sanders was diagnosed with paranoid schizophrenia, which was affirmed during the course of her trial by an expert clinical neuropsychologist based on her psychotic behavior, evidence of psychosis in her notebooks, and the nature of the killings.

During Sanders’ trial, however, Judge Sullivan did not allow her defense to present her mental health records to jurors, citing them as irrelevant and inadmissible unless the prosecution brought them up, which they did not. This means that Sanders’ diagnosis was never brought up during her trial.

In 2022 Sanders was convicted of murder and received two life sentences. But the Massachusetts Supreme Court has overturned Sanders’ conviction, and she will receive a new trial, declaring that by excluding her mental health records, Sanders defense was “impermissibly stripped of the medical foundation that supported it [her defense].” In her new trial, her mental health records can be presented as a part of her defense. In Clancy’s trial, as of Sept 5, the judge declared a mistrial because the jury did not unanimously agree to a not guilty by reason of insanity decision. A hearing is set for Sept 29, at which Clancy and everyone closely following this case may learn her fate.

In Clancy’s case, her poor mental health was allowed to be used as an explanation for criminal behavior and to absolve her from responsibility for her actions. Sanders’ poor mental health, on the other hand, was ignored, and she was thought to be fully responsible for her criminal behavior.

One difference between Sanders and Clancy that people may point out is that Clancy sought care for her declining mental status before killing her children, while Sanders did not. While we do not know the exact circumstances of Sanders or Clancy’s care, we do know that the women are from towns with very different average income levels, $80k vs $177k, respectively. So while we do not know details, we ought to consider access to mental health care as a factor in Sanders’ case. How accessible was a mental health care provider to Sanders? Was cost, child care, transportation, medical insurance, stigma, and any other barriers we know that can impede access to health care for individuals from low income or marginalized backgrounds factors for Sanders? In other words, not having a diagnosis is not enough to sway me that there are enough similarities between Sanders and Clancy to support Sanders’ mental health to be a part of her defense in the same way Clancy was allowed to turn to her mental health as support for her defense.

Again, I make no comment about who has a mental illness and who does not, or who is responsible for a crime and who is not. My issue is that these are two similar cases being treated very differently by those with the power to punish these women. And the person being held to different standards of responsibility and criminality is a Black woman.

There is a history of Black people suffering from mental illness being treated with much more force and state-sponsored violence. And much of the origins of mental health care stem from the control and enslavement of African and African Americans. This is all a part of Sanders’ story. How her trial ended very differently from what is happening with Clancy includes the Black people’s relationship to our legal system and to mental health care.

“We all know what would of happened if she were Black” is not paranoia. It’s an expected response to seeing race, mental health, and criminality intertwined in such a way that Black people keep finding themselves on the losing end of the tenet- treat like cases alike.

Keisha Ray, PhD is an Associate Professor at the University of Texas Health Science Center at Houston.

The post In the News…“We all know what would of happened if she were Black”: Race, Mental Health, and Treating Like Cases Alike appeared first on Bioethics Today.

A healthcare system can perform well without always caring, well. Safety, quality, efficiency, and productivity are legitimate goals of healthcare. But achieving them does not necessarily mean that good care has occurred.

Consider a hypothetical patient in an intensive care unit whose health is improving and who has met the hospital’s criteria for transfer to a regular floor. The checklist is complete, a bed has been assigned, and the electronic dashboard marks the patient as ready. The transfer will improve flow through the unit and make a bed available to someone waiting in the emergency department.

At the bedside, however, the patient seems less alert than an hour ago. A family member tells the nurse that her father seems different. The receiving unit is short-staffed and has not yet reviewed the transfer plan. Delaying the transfer may disrupt a process established to increase patient throughput and may be recorded as a failure to meet an operational target. Sending the patient too soon may preserve the appearance of efficiency. Yet doing so could shift unresolved clinical needs to the receiving unit, cause avoidable distress, and increase the likelihood of deterioration or return to the ICU.

Which choice represents good care?

The question exposes why the distinction between healthcare and care matters. The two are closely related, but they are not interchangeable.

Healthcare is an organized enterprise that includes hospitals, clinics, professionals, technologies, policies, payment structures, documentation, and workflows. A healthcare system must pursue many legitimate goals, all ostensibly in service of the patient. The Institute of Medicine’s influential report Crossing the Quality Chasm described healthcare as needing to be safe, effective, patient-centered, timely, efficient, and equitable. A focus on these aims has helped institutions prevent harm, reduce delay, standardize effective treatment, and identify disparities.

Care is different. Care is the practice of recognizing what another person needs, accepting responsibility for responding, acting with competence, and remaining attentive to how that person responds. This understanding draws on political theorist Joan Tronto’s account of care as a practice requiring attentiveness (caring about), responsibility (taking care of), competence (care-giving), and responsiveness (responding to the care receiver).

These four components are not merely compassionate additions to technical work. They are part of what makes clinical work care. In the vignette above, attentiveness is required to notice that the patient is less alert. Responsibility matters when someone must decide who will act on the concern. Competence includes the knowledge and judgment needed to determine whether the change is significant. Responsiveness requires adjusting the plan when the patient’s situation no longer fits the expected course.

The distinction matters because a healthcare process can succeed on its own terms while making care more difficult.

A discharge initiative can be a valid effort to reduce intensive care unit and hospital lengths of stay and healthcare costs. Yet if discharge time becomes the overriding objective, a patient’s changing needs may be treated as obstacles to the process. Similarly, a clinical alert can identify deterioration accurately while drawing attention away from information that does not appear on the screen. A documentation system can improve completeness while fragmenting conversation and limiting the time available to understand what concerns a patient. A staffing model can meet formal requirements while distributing responsibility so diffusely that no one is sure who should respond when the situation changes.

In each case, the policy, technology, or workflow may be functioning as designed. The problem is not necessarily that the intervention is unsafe, ineffective, or poorly implemented. The problem may be that success is being evaluated without examining how the intervention has changed the conditions under which care is practiced.
This is not an argument against safety, quality, efficiency, or productivity. Safety is an essential part of competent care. Timeliness can be deeply responsive when prompt action relieves suffering or prevents harmful delay. Efficiency can free resources for patients who need them. Productivity matters to institutions that must remain financially sustainable and serve many people.

These goals become ethically troublesome when they are treated as evidence that care has occurred, or when they begin to define what care requires. An efficient patient transfer is not necessarily an attentive transfer. A completed checklist does not establish who is responsible, and for what. Technical success does not guarantee that the patient’s experience, concerns, or changing condition have been understood. Processes can be standardized in good faith without being sufficiently responsive to circumstances that standardization cannot anticipate.

Quality frameworks often recognize patient-centeredness, communication, and outcomes that matter to patients. Even so, no framework or set of measures can fully substitute for the practice of care. While quality measures identify what an institution believes—or in some cases is required to consider—is important and is able to count, care is often revealed in the need to interpret, question, pause, coordinate, or depart from an expected pathway because this patient, at this moment, requires something different.

When healthcare and care are treated as synonyms, organizational goals can become moral stand-ins for care. Throughput can stand in for responsiveness, compliance for responsibility, task completion for competence, and available data can determine what deserves attention. The system may then optimize these indicators while weakening the practice they were meant to support.

We need a clearer way to talk about the relationship between the two. Healthcare is the institutional arrangement within which care is organized and delivered. Its policies, technologies, staffing models, financial incentives, and performance measures shape the conditions under which people try to care for one another. These arrangements should be judged not only by whether they achieve their stated operational goals, but also by whether they help clinicians, patients, and families notice what matters, understand who is responsible, act competently, and respond when needs change.

That additional judgment will not always produce a simple answer. Delaying the transfer to the intensive care unit may affect another patient in need of a bed. Continuing with the transfer may also be reasonable after the concern is assessed. Care does not remove competing obligations or operational constraints. It requires that those constraints not settle the question before the patient’s situation has been adequately understood.

The distinction between healthcare and care is therefore not semantic. Care gives healthcare’s many legitimate aims a direction. Safety, quality, efficiency, technology, and organizational performance should support the practice of care rather than become substitutes for it.

Before calling a new policy, workflow, or technology an improvement in care, we should ask a further question: What does this change in practice conditions make easier or harder for people who must notice, take responsibility, act competently, and respond to the patient in front of them?

The work ahead is to make the conditions required for care visible and to ensure that healthcare remains organized around the practice it exists to support.

Tjörvi E. Perry, MD, MMSc, MBE, is a cardiac anesthesiologist and bioethicist.

Kathleen A. Harder, PhD, is an experimental cognitive psychologist.

The post Healthcare Is Not the Same as Care appeared first on Bioethics Today.

Recently, two very different but equally thought-provoking articles were published within a day of each other on the Bioethics Today blog. After reading both, I found they were like two sides of the same coin when thinking about disability ethics. Wolfe and Escandon wrote about a difficult surrogacy story involving hypoplastic left heart syndrome, or HLHS, and described hypoplastic left heart syndrome (HLHS) mainly through suffering, burden, and low quality of life. Elster, Parsi, and Caplan called out political rhetoric that portrayed disabled lives through dependency and low possibility. Of course, the contexts and ethical questions are not the same. But reading the articles, one after the other, left me wondering about the messages bioethics sometimes sends about disability.

I wondered what a person living with HLHS might think about when reading an account of a life like theirs, framed by burden and premature death. In their article, Wolfe and Escandon’s descriptions of HLHS, its lifesaving interventions, and a life beyond those interventions were understandably bleak. While such a portrayal is reasonable given the medical challenges of HLHS, it may inadvertently suggest to the disability community that lives shaped by disability or complex medical needs are inherently less valuable or fulfilling.

It made me wonder: If ableist portrayals of disability deserve scrutiny when they shape public attitudes and policy, should they receive any less scrutiny when similar medical tragedy models are communicated by bioethicists whose expertise may influence how families imagine the possibilities of a disabled child’s life?

A recent case in Texas involved an Alaska surrogate and intended parents in California. Reports stated that their agreement contained a termination clause addressing fetal abnormalities. At about twenty weeks, the fetus was diagnosed with HLHS.  The Associated Press, reporting on court documents, revealed the intended parents sought termination of the pregnancy after medical consultations, but the surrogate later refused.

HLHS is a serious diagnosis, and it requires staged surgeries and lifelong cardiac care. But advances in surgical and specialized cardiac care have substantially improved outcomes, with one-year survival increasing from 43% in the 1980s to 80% in 2023. In fact, a recent study from the Children’s Hospital of Philadelphia (CHOP) that followed patients who underwent staged surgeries from 1984 to 2023 found that most surveyed adults reported good-to-excellent general health and quality of life. Ultimately, the diagnosis of HLHS is serious, but diagnosis alone cannot establish that the resulting life will have an unacceptable quality of life.

In their article, Wolfe and Escandon understandably emphasized the seriousness of HLHS and the burdens of treatment. They wrote that “surviving patients have limitations in quality of life,” and that some loving parents may conclude that the treatments and risks are “out of proportion to any of the potential benefits.” Proportionality is a valid clinical ethics concept that weighs an intervention’s benefits against its burdens. But when treatment proportionality migrates into what I would call “existential proportionality,” it creates a bioethical tension. (I use that phrase descriptively, not as an established clinical doctrine). It goes from “Are the burdens of the surgery proportionate to the benefits?” to “Are the possible burdens of this child’s life proportionate to the benefits of that life?” The second question projects an unknown future and assigns a moral weight to disability before life has begun.

What would a person living with HLHS hear in an ethical analysis questioning if their life has a “proportionate benefit” to its burdens? They may ask whether the language of proportionality can overlook the values we bring to judgments about disability.

Wolfe and Escandon also recognized that, after birth, parents may choose among medically and ethically permissible options, including staged palliation, transplantation, and comfort care. Comfort care can be an ethically appropriate choice for a newborn with HLHS because the condition may be accompanied by significant genetic, neurologic, or other extracardiac conditions that can alter prognosis. These comorbidities may make the burdens of staged palliation disproportionate to its potential benefits. But that is different from projecting the burdens or value of a child’s future life from an HLHS diagnosis itself.

The subsequent course of this Texas case makes it relevant. Born on August 12, the baby was determined to be eligible for surgery. He underwent the Norwood procedure on August 17, and he was reported to be recovering–but in serious condition. None of this treatment guarantees his future or lessens the serious issues associated with his diagnosis. But this case does invite an important question: if uncertainty about future suffering and treatment burdens weighs ethically in favor of comfort care, shouldn’t the other side of that uncertainty (like the possibility of survival and a life) receive comparable weight?

Disability scholars have cautioned for many years that reproductive and medical decisions do not happen in a value-neutral information environment. Adrienne Asch described the tendency to allow a disability diagnosis to represent a whole person. She and David Wasserman used the rhetorical device called Synecdoche, where one characteristic becomes predictive of an entire future. Joseph Stramondo has also argued that tensions between disability bioethics and mainstream bioethics are, in part, differences in the assumptions non-disabled people make about the lived experiences of disabled people. The concerns are again reinforced when we hear about the “disability paradox” where people living with disability often report a better quality of life than their nondisabled observers.

Altogether, this scholarship gives reason to scrutinize descriptions of a future life as burdensome, dependent, suffering, etc. Empirical studies of medicine can estimate morbidity and mortality, but they cannot determine the burden of a disabled life. That is a value judgement based on one’s own assumptions about a future person whose life, relationships, adaptations, and happiness remain unknown.

The issues described in this essay are why the contrast of the two articles in the Bioethics Today Blog matters. If assumptions matching disability with diminished human value are receiving scrutiny when they appear in public health policy, then they should not be invisible when they come up in reproductive or neonatal decision-making as well.

Kyoko L. Yoda, DMD, MSPH, MSD is an instructor at Children’s Hospital Colorado.

The post When Bioethical Neutrality is not Neutral: Disability, Autonomy, and the Value of Life appeared first on Bioethics Today.

In early August, an Alaska woman named McKenna West was serving as a gestational surrogate for a Los Angeles couple when a prenatal diagnosis revealed the fetus had hypoplastic left heart syndrome, a serious but treatable congenital heart defect. According to West’s own account, the intended parents asked her to terminate the pregnancy. She refused and traveled to Texas, where abortion is illegal, to give birth.

Texas Attorney General Ken Paxton then intervened directly, securing a court order compelling stabilizing and life-sustaining care for the newborn, whom West calls Baby Gabriel, over the intended parents’ objection. The baby underwent surgery in August, and Paxton’s office withdrew from the case once treatment was secured.

Texas law does not consistently recognize fetal personhood. It restricts abortion almost entirely yet stops short of granting a fetus independent legal standing in other contexts, such as inheritance or tort claims. That ambiguity is not an oversight. It is the compromise that lets the state regulate pregnancy without fully committing to the legal consequences of calling a fetus a person.

Paxton’s intervention and interpretation came on exactly where it was needed to win, and nowhere else. To override two parents’ medical decisions and compel a specific surgical outcome, the state needed the child to already function as a rights-bearing individual with interests independent of his parents’ wishes.

This matters because the same legal architecture offered no comparable protection to the person who actually made this outcome possible. West carried this pregnancy, refused a request to terminate it, and left Alaska to secure care for a child who was not genetically hers.

Under the American Society for Reproductive Medicine’s 2023 ethics committee opinion, gestational carriers are the sole source of consent for their own medical care from embryo transfer through delivery and aftercare, specifically because complications can create situations where fetal or neonatal wellbeing might otherwise be weighed against the carrier’s own health. Her autonomy, in other words, is the one interest this case should have made legally uncomplicated.

This is nothing but selective personhood: not hypocrisy in the simple sense, since nobody in this case lied about what they believed, but a legal reflex where fetal personhood gets invoked exactly when it produces the desired outcome and recedes when invoking it consistently would mean granting pregnant women broader protection than the state is willing to extend. Bioethics has spent decades building frameworks for maternal-fetal conflict, weighing a pregnant woman’s autonomy against a fetus’s interests when the two disagree. None of that literature anticipated a third actor, a state official, asserting fetal personhood only when the pregnant woman’s wishes and the fetus’s interests happened to align, and staying silent every other time.

That alignment itself is worth pausing on, rather than treating it as simply fortunate. It is not a coincidence that this became the case Texas chose to fight for. CNN reporting found that West was connected to Alliance Defending Freedom, a conservative Christian legal organization now representing her, through Live Action, an anti-abortion nonprofit that paid for her travel from Alaska to Texas.

 ABC13 Houston reported that the case has drawn in Texas Alliance for Life and Texas Right to Life as well, since it touches three priorities those groups already share: opposing abortion, defending parental rights, and restricting commercial surrogacy. A law professor quoted by CNN noted the case also dovetails with a broader anti-surrogacy push among conservatives. None of this required West to be doing anything but telling her own story, but it explains why the state’s selective personhood claim found a case where its logic and a sympathetic set of facts happened to line up perfectly, and why that alignment should not be mistaken for evidence that the underlying legal reasoning is any more consistent than it was before.

If bioethics actually wants and aims to close this loophole rather than just name it, the fix has to be structural. A state that invokes fetal personhood to justify overriding one decision should be bound to apply that same personhood status consistently wherever else it carries legal weight, in inheritance claims, in tort law, in every context where personhood already does real work, or explain specifically why it doesn’t. A consistency requirement like this would not settle the underlying disagreement over what constitutes a fetus. It would simply stop states from having it both ways, restricting a pregnant woman’s choices on the premise of personhood while denying that same fetus personhood everywhere else it would be inconvenient to grant it.

Until that requirement exists, every state that intervenes this selectively will keep calling it protection. The next carrier who finds herself standing where McKenna West stood deserves a bioethics literature that saw this coming, not one still catching up to it after the surgery is already over.

Yodhin Aggarwal, MHA

The post Personhood, When Convenient? appeared first on Bioethics Today.

Lindsay Clancy is a former labor and delivery nurse who is on trial for the January 24, 2023 strangulation deaths of her three children. Clancy did not have a documented significant psychiatric history, but over a four-month period at the end of 2022, she developed significant depression, anxiety, insomnia, and suicidal ideation. She sought help multiple times through psychiatrists, mental health providers, hospitalizations, calls to suicide hotlines, and was prescribed over a dozen psychiatric medications during that period. Her condition worsened and culminated in the deaths of her children and a suicide attempt that left her paralyzed. Her defense argues that she was suffering from undiagnosed bipolar disorder, postpartum depression, and postpartum psychosis when she killed her children.

Postpartum psychosis is a rare but severe psychiatric condition associated with childbirth. It can involve mania, severe depression, delusions, hallucinations, confusion, agitation, and rapidly changing mental states. Recent expert consensus estimates that it occurs after roughly 0.1–0.2% of deliveries among women without a prior psychiatric history. Postpartum depression affects many more women: 1 in 7.

During the trial, Clancy’s defense attorney Kevin Reddington asked a psychiatrist a deceptively simple question:

Is postpartum psychosis in the DSM?

The exchanges were striking. Dr. Alia Goodheart, a psychiatrist who had treated Clancy at McLean Hospital, testified that she did not know exactly where postpartum psychosis appeared in the DSM-5. Asked whether she had ever seen it there, she said she did not recall paying attention to where it was categorized.

Later in the trial, psychiatrist Dr. Donald Condie was questioned about the same manual. Asked what a reader would find by looking for postpartum psychosis, he testified that there was “one mention on page 148.”

Then, on Day 18 of the trial, psychiatrist Dr. Avram Mack (testifying for the prosecution) explained that postpartum psychosis is not a standalone disorder found in the DSM-5. Instead, clinicians generally diagnose an underlying psychiatric disorder and, where appropriate, use a “with peripartum onset” specifier.

Attorney Reddington goes straight at this omission: “Are you aware, sir, that postpartum psychosis and postpartum depression are pretty much virtually not even mentioned in your DSM-5-TR?…It’s a paragraph. Out of a thousand pages, it’s a paragraph.”

Whatever conclusions one reaches about Clancy’s mental state or criminal responsibility, these exchanges expose a question that extends far beyond one defendant and one courtroom:

Does our psychiatric vocabulary adequately describe what can happen to women after childbirth?

The answer is less straightforward than patients—or perhaps even many clinicians—might reasonably expect. Postpartum depression and postpartum psychosis are disorders that are commonly talked about, but the DSM does not independently diagnose. It is true that they can be classified as a sub-species of major depressive disorder or psychosis (via a specifier of peripartum onset), but they do not exist as standalone diagnoses. That distinction may sound technical. But diagnostic categories shape what clinicians are trained to recognize, what researchers study, what patients are told to watch for, and what symptoms are likely to be understood as part of a coherent syndrome. Classification affects visibility. And visibility matters. Clancy sought help from at least six different mental health providers, visited an emergency room, requested care at a women’s and infants’ hospital, checked herself into an inpatient stay voluntarily, called suicide hotlines twice, and received over 32 prescriptions—all in the span of 4 months. Not one of these encounters offered Clancy an accurate diagnosis or relief from her reported symptoms.

The four-week problem

There’s another problem that may have played a role in Clancy not receiving a diagnosis of postpartum psychosis and/or depression: DSM’s peripartum-onset specifier has traditionally applied when onset occurs during pregnancy or within four weeks after childbirth.

Four weeks.

That means a qualifying mood episode beginning 27 days after delivery may formally receive a peripartum specifier, while a comparable episode beginning later may not. Clancy’s last delivery had been roughly 5 months prior (baby Callen was 8 months old at the time of his death and her older children were 3 and 5 years old), not four weeks.

Reddington read the DSM’s peripartum-onset specifier out load to Dr. Mack during his testimony: it applies to mood episodes beginning during pregnancy or within four weeks after delivery. Dr. Mack confirmed, “That’s the four-week cutoff that’s on that specifier.” Reddington immediately responded sarcastically, “When was this last amended? 1958?”

The DSM’s approach becomes especially striking when compared with contemporary obstetric guidance. The American College of Obstetricians and Gynecologists addresses mental health conditions that may first arise during pregnancy or during the first year postpartum, and its clinical guidance explicitly includes postpartum psychosis.

Diagnostic categories are choices, not discoveries: other systems made a different choice

The DSM (published by the American Psychiatric Association) is not the only way to organize psychiatric illness.

The World Health Organization’s ICD-11 (used more outside of the U.S.) handles things differently. It has an explicit category called “Mental or behavioural disorders associated with pregnancy, childbirth or the puerperium, with psychotic symptoms” (6E21), alongside a corresponding category without psychotic symptoms (6E20). WHO’s 2024 CDDR is intended precisely as clinical diagnostic guidance, not merely a statistical coding manual.

A major comparison of ICD-11 and DSM-5 explains these differences. The ICD framework reflects, in part, the language used by obstetricians and other clinicians who commonly describe conditions as postpartum depression or postpartum psychosis, while the DSM tradition has emphasized the underlying psychiatric syndrome.

But their disagreement reveals something important: diagnostic manuals do not merely discover categories that exist in nature. Human beings decide how illness should be divided, named, and recognized.

Those choices have consequences.

A patient herself does not experience disciplinary or geographic boundaries. She experiences symptoms. A healthcare system should make those symptoms easier to understand, not harder.

Psychiatry itself is reconsidering the question

This concern is not an argument invented by attorneys in a criminal trial. Researchers are actively debating it.

A recent international expert consensus statement argues that postpartum psychosis has a sufficiently distinctive timing, presentation, prognosis, treatment response, and relationship to bipolar-spectrum illness to justify clearer classification. The authors recommend recognizing postpartum psychosis as a distinct diagnostic category and propose an onset window of up to 12 weeks after childbirth.

That proposal is not yet the DSM standard. But its existence should make us ask whether our current categories are doing enough. As I write this, the next version of the DSM (DSM-6) is in development, which presents an opportunity for revisions.

The Clancy case should not define postpartum psychosis

There is an important ethical danger here. Postpartum psychosis should not become publicly synonymous with infanticide or filicide. The Clancy case presents extraordinary and contested facts. Diagnosis and criminal responsibility are different questions, and experts may disagree about both.

If the only time Americans hear the term “postpartum psychosis” is after a horrific tragedy, increased awareness could easily become increased stigma. Women should not need a catastrophe before medicine examines its categories.

We need better research, clearer communication between obstetrics and psychiatry, more education for families and frontline clinicians, and diagnostic systems willing to evolve when their categories no longer serve patients well.

Jennifer Blumenthal-Barby, PhD, MA

AI statement: I used ChatGPT to go back and forth on blog post content, but all ideas, arguments, and writing of final draft in this blog post are mine.

All views expressed in this essay are entirely those of the authors and not those of any of the author’s affiliations

The post In the News… When Psychiatry Fails Women: Lessons from the Lindsay Clancy Trial appeared first on Bioethics Today.

As individuals concerned with ethics in science, medicine, and public health, we wish to express our dismay at the approach taken by Senate leaders to pursue an unwarranted, ill-advised, and frankly bizarre vendetta against a scientist, Dr. Anthony Fauci, rather than making a sincere effort to learn from the painful experiences of the pandemic to improve national preparedness. No human is perfect, but Dr. Fauci deserves appreciation for his decades of service to American science, and he deserves respect for taking on the difficult work of advising federal policy makers during the worst plague of this century. We condemn the decision to hold him legally in contempt of Congress as the outcome of a staged public persecution, and we fear the future implications of politically and legally targeting scientists who advise the government.

Policy makers have an ethical obligation to gather information and learn from experience, and there is much to be learned from the pandemic response, both good and bad. There are legitimate ethical and scientific questions to be asked about the safety and utility of viral gain of function research, the effectiveness of various public health policies, and more. But bringing Dr. Fauci to the Senate under conditions of repeatedly threatened prosecution, thereby forcing him to invoke his fifth amendment rights, serves neither to obtain information nor learn lessons.

If the Senate wished to hear from Dr. Fauci and learn how to be better prepared for the next pandemic, they could have provided him with Use Immunity, and he would not have invoked his 5^th Amendment right to decline to answer questions, even in the face of prior threats of prosecution. But they chose not to do so, showing that neither protecting the public from future pandemics nor learning were the aims of the hearing.

Some Senators instead used the hearing as a blunt warning to other physician-scientists to avoid public service or risk being ensnared in a political and legal trap like the one laid for Dr. Fauci.

Dr. Fauci’s lifetime of service is well-documented. He served 7 U.S. presidents—Republicans and Democrats alike. He led the National Institute of Allergy and Infectious Diseases (NIAID) for nearly 4 decades. He has received numerous honors, including honors from President Trump for his efforts on the COVID vaccine program, Operation Warp Speed. His career has been built on research integrity, pursuing answers to important questions, and an unwavering commitment to bettering all people’s lives.

During the COVID-19 pandemic, Dr. Fauci was, as always, an advisor to policymakers, but he also became the public face of the federal government’s response. As such, he fought to maintain credibility for sound science and evidence-based COVID responses, sometimes eliciting the ire of those with differing views. But as he had done throughout his long career, he worked with a wide range of scientists and sought to make the best recommendations he could to policymakers under evolving, uncertain, and frightening conditions. 

The proper way to investigate the origins of COVID, or any other question about the pandemic and the nation’s responses to it, is through rigorous scientific inquiry, which can then inform policies. Staged, political hearings with predefined scapegoats teach nothing, and using criminal law rather than scientific inquiry to answer scientific questions is damaging.

Signatures,

List of 130 signatories can be found here: Fauci Support Letter (Responses)

(University titles and other affiliations are for identification only, no institutional endorsement is made or implied by signatories)

Arthur Caplan¹, Matthew Wynia², Dominic Sisti³, Lainie Ross⁴

1. New York University, Grossman School of Medicine
2. University of Colorado, Center for Bioethics and Humanities
3. University of Pennsylvania, Perelman School of Medicine
4. University of Rochester Medicine
   

Corresponding author: Matthew Wynia, University of Colorado Center for Bioethics and Humanities

(Photo Credit: NIH Image Gallery from Bethesda, Maryland, USA, Public domain, via Wikimedia Commons)

The post An Open Letter of Support for Anthony Fauci from the Bioethics Community appeared first on Bioethics Today.

What if, instead of another conference panel, bioethicists hosted an exhibition, curated a playlist, staged a performance, or collaborated on a short film?

What if our work did more than explain and evaluate ethical problems? What if it also moved people, unsettled assumptions, and made unfamiliar experiences more difficult to ignore?

Our field has developed powerful tools for identifying values, clarifying concepts, evaluating arguments, and guiding decisions. It is also an applied field, with bioethicists regularly working alongside clinicians, researchers, policymakers, patients, and communities.

These analytic and practical contributions remain essential. But they are not enough.

Bioethics should become more open to artistic and creative practices, not simply as ways of communicating conclusions already reached, but as methods for exploring ethical questions.

Old Habits in a Young Field

Modern bioethics emerged largely within universities, hospitals, and research institutions. Unsurprisingly, it adopted their dominant forms of knowledge production: scholarly articles, books, conference presentations, lectures, reports, policy briefs, and committee recommendations.

These forms work. They allow us to develop careful arguments, scrutinize evidence, and communicate with professionals and decision-makers. Bioethicists have become particularly adept at meeting scientists, clinicians, and policymakers on their own institutional terrain, providing the arguments and documents needed to reshape policy or practice.

Yet these forms also impose limits. They tend to privilege explicit argument over sensory experience and abstraction over emotion. Their audience is primarily professional. Even when bioethicists study decisions that profoundly affect patients, research participants, caregivers, and communities, our work often remains inaccessible to many of them.

Making an academic argument shorter or adding an infographic does not necessarily change how the ethical issue itself is understood. Creative practices can.

Art as a Method of Bioethics

Art is often treated in academic settings as illustration, enrichment, or outreach, something added after the serious intellectual work has been completed. That misses its ethical and epistemic potential.

A story can place an audience inside a conflict rather than leave it observing from a distance. A photograph can make structural exclusion visible. Theatre can expose the competing responsibilities embodied in a clinical encounter. Music, dance, and poetry can communicate vulnerability, dependence, fear, grief, or moral distress in ways that resist reduction to propositions.

Such works do not merely generate feelings about ethical issues. They can reveal dimensions that conventional analysis has overlooked. They can shift whose experiences become visible, what counts as relevant knowledge, and which questions appear worth asking. They can also support the agency and presence of people too often relegated to the role of passive subjects.

This is not an argument against analysis. Creative work without critical reflection can reproduce stereotypes, sentimentalize suffering, or substitute emotional impact for ethical judgment. But conventional bioethics also has characteristic failures. It can flatten lived experience, treat social power as contextual background, and assume that what can be clearly stated is all that matters ethically.

The medical and health humanities have long treated literature, visual art, performance, and other creative practices as credible and legitimate ways to understand illness, care, disability, and professional life. These fields developed in part because analytic arguments alone could not capture the full complexity of health and illness, and bioethics has much to learn from both their successes and their challenges.

The point is not to choose between creative and analytic approaches, but to recognize that each can correct some of the other’s limitations.

Creating Institutional Space

For more than a decade, the Canadian Journal of Bioethics / Revue canadienne de bioéthique has invited visual art, fiction, poetry, film criticism, and other creative works through its Arts, Culture and Creative Works section. Other journals have created related spaces for non-traditional forms of bioethical inquiry. Narrative Inquiry in Bioethics, for example, explores bioethical questions through personal stories, qualitative research, and case studies that leverage rich descriptions of human experience to help deepen ethical understanding.

In 2016, an Art + Bioethics project paired emerging artists with junior bioethics scholars, culminating in both a gallery exhibition and a journal collection. The point was not to decorate articles with attractive images. Artists and bioethicists worked together on shared questions, bringing different methods, assumptions, and forms of attention to the collaboration. The artworks and bioethics texts informed one another, shaping both the final works and their meaning.

Similar possibilities are emerging in bioethics education and graduate research. Students increasingly use graphic narratives, speculative fiction, visual media, performance, and participatory artistic activities to investigate ethical questions and engage communities. Their work shows that creative practices can be integrated into serious conceptual and empirical research rather than relegated to extracurricular communication.

But isolated experiments are not enough. Journals, graduate programs, research centers, and funders must create legitimate space for this work.

Creativity Still Requires Rigour

Opening bioethics to artistic practice requires standards appropriate to different forms of inquiry.

This challenge became clear in a 2016 research project entitled Responsible Conduct in Research-Creation: Providing Creative Tools to Meet the Challenges of an Emerging Field. Many conventional research norms had emerged from the empirical sciences and did not translate neatly into artistic settings, including forms of “punk ethics” intended to destabilize audiences. At the same time, artistic freedom did not eliminate responsibilities concerning consent, collaboration, attribution, power, harm, or accountability. The resulting research-creation toolbox treated differences in methods and objectives as matters requiring explicit discussion and ethical judgment, rather than the imposition of a general set of rules.

Creative bioethics requires the same seriousness. Who has the authority to represent an experience? Who controls the resulting work? How are collaborators credited? When does provocation become exploitation? How should audiences participate? What obligations arise when a project makes suffering visible?

Art can empower, but it also creates new forms of ethical responsibility for bioethicists.

Expanding What Bioethics Can Do

Not every bioethicist should become a painter, novelist, or performer. That would be both unrealistic and exhausting. The more reasonable invitation is to collaborate and experiment.

Journal editors can create space for creative scholarship and recruit reviewers able to evaluate it fairly. Supervisors can support students who want to integrate artistic practices into their research. Funders and universities can recognize exhibitions, performances, films, graphic works, and community-based creations as substantive research contributions. Practising bioethicists can consider whether stories, images, performance, or participatory activities might enrich engagement with patients, professionals, and communities.

The people affected by bioethical decisions do not primarily encounter them through journal articles. They understand ethical problems through bodies, relationships, images, stories, institutions, and emotions, as well as through arguments.

Bioethics already asks how we should live together amid vulnerability, technological change, unequal power, and competing ideas of the good. Creative practices allow us to encounter those questions differently. They can make abstract issues tangible, disrupt familiar categories, and bring neglected experiences into view.

Bioethics should continue to analyze, deliberate, and advise. But it should also make, perform, imagine, and create.

We should not only explain why ethics matters. We should help people see, hear, and feel what is at stake.

Bryn Williams-Jones, PhD, is professor and director of the Department of Social and Preventive Medicine, School of Public Health, Université de Montréal.

The post Making Bioethics Creative: Art Should Be Treated as Method, Not Decoration appeared first on Bioethics Today.

This editorial appears in the August Issue of the American Journal of Bioethics

“Better babies.” “Fitter families.” “Survival of the fittest.” “Three generations of imbeciles are enough.” These phrases are not merely historical reminders of the United States’ regrettable eugenic past but are appearing in an increasingly eugenic present. Eugenics may have seemed dormant, but has recently been reawakened by the alt-right, tech billionaires, and figures such as Robert F. Kennedy (RFK), Jr., Stephen Miller, and President Trump. Autism has become the most recent target of eugenic ideology.

The administration’s stoking fear of and offering feigned support for autistic children and their families has bolstered MAHA’s ongoing eugenic rhetoric about the “scourge” of autism. This harmful language continues despite scientific evidence supporting MAHA’s misplaced (and scientifically refuted) views about the causal roles of vaccines and Tylenol. Disastrous political ideologies of the 19th century dominate this administration’s policies, but none so perniciously as the ideology of eugenics as applied to autism.

Ridding society of disabled individuals has long been the goal of eugenics. In fact, “[t]he goal of the Nazi Euthanasia Program was to kill people with mental and physical disabilities” (Holocaust Encyclopedia). This grim eugenic history dates back to the 19th century when it was considered part of mainstream medicine and science. Scholars have argued that medicine legitimized eugenics through “expertise laundering,” whereby “unsettled expertise [is laundered] through various interdisciplinary ‘transactions’ until it appears settled”. From eugenics to Lysenkoism to MAHA, ideologies are legitimized by those in power and authority asserting a goal of improving society yet, in reality, harming public health, demonizing vulnerable minorities, and ignoring individual dignity and well-being.

Public health and eugenics share similar nomenclatures. Both focus on society, prevention, and betterment. The difference between the two, however, is in intent. Public health seeks to improve the lives of individuals by improving the lives of the community. This contrasts with the crude consequentialism of eugenics, which seeks to eliminate the lives of some to decrease economic burdens, thereby purportedly improving the lives of many. Eugenics seek to serve the powerful; public health seeks to empower the marginalized.

Historically, those promoting eugenics have often couched their agenda in terms of public health, which is precisely what RFK, Jr. and his MAHA cronies have been doing through their rhetoric around autism. They are utilizing a public health rationale to peel back decades of laws and regulations aimed at increasing vaccination rates to reduce communicable disease globally with one narrow and bogus goal: eliminating autism. This is problematic because reducing vaccination rates will not eliminate autism. It will, however, greatly harm many individuals while endangering public health. And it will ultimately lead to an increase rather than decrease in morbidity and mortality—exactly what MAHA claims it wants to prevent.

The U.S. eugenics movement of the early 20th century served as the blueprint for the Nazi regime that espoused a similar mission of exterminating the disabled. In the oft-quoted Supreme Court case of Buck v. Bell, which has notably never been overturned, Justice Oliver Wendell Holmes, Jr. asserted that

It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetence. It is better for all the world if, instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind.

This claim by Holmes continues to have life among contemporary leaders, highlighting the fact that eugenics in America has never really gone away, but merely has been hiding in plain sight. For instance, RFK, Jr. erroneously describes autism as a monolith, describing it in its most severe expression, which notably accounts for about a quarter of autistic individuals. He makes his assertions about autism using the language of public health by referring to autism as an epidemic, based on more faulty reasoning about the increasing number of autism diagnoses. The tenor and tone of his rallying cry eerily echo the explicitly eugenic language of Holmes:

Autism destroys families. More importantly, it destroys our greatest resource, which is our children. These are children who should not be suffering like this … These are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a toilet unassisted. And we have to recognize we are doing this to our children. and we need to put an end to it.

Both statements rely on the language of public health and public welfare to mask economic and ableist motivation. In describing the ableist notions that fed into the Nazi elimination of 300,000 disabled individuals, historian Dagmar Herzog writes that both mental impairment and/or mental illness

destabilize the idealized notion of the autonomous subject and, not least and most enduringly, because of the challenge that these impairments have raised for the expectation of being able to contribute labor to one’s community, rather than requiring the labor of care and support from others.

Interestingly, both Holmes and Kennedy discuss vaccination—Holmes uses it as a metaphor, whereas Kennedy blames vaccinations for causing autism as part of his public health subterfuge. Both assert the state’s power and authority to promote the public welfare; however, neither acknowledges the significant difference between communicable disease and disability, with one being contagious and capable of rapid spread to many and the other being a much more amorphous concept that can be inborn, acquired, or simply created as a medical condition. The interest in the state in stemming communicable diseases such as measles or COVID-19 is in the prevention or eliminating a disease vector rather than the prevention of the existence of a human being.

A 1997 American Journal of Public Health article comparing and contrasting eugenics and public health in the wake of the Human Genome Project reasons that “[s]ome of what was done in the name of eugenics was also done in the name of infection control and public health. Eugenics was not an isolated movement whose significance is confined to the histories of genetics and pseudoscience”. The conclusion is relevant to the current debate about autism “prevention”: “Past similarities between eugenics and public health serve as an alarm clock for all the health sciences”.

The response to disability should never be the elimination of people with disability but should rather be a collective response to helping those individuals participate as fully in our communities as possible. Autism is not the scourge on society that RFK, Jr. would have us believe; rather, it is rampant elite ableism that is the true epidemic. In fact, one could argue that an ableist classism has animated much of the policy decisions to eliminate vaccine recommendations—tools that in the absence of a universal health care system have greatly benefited marginalized groups. The tools and language of public health would be better applied in preventing and reducing the burden of this narrowmindedness rather than being bastardized to promote harmful, dangerous, and bigoted ideology.

Nanette Elster, JD, MPH, Kayhan Parsi, JD, PhD, HEC-C, and Art Caplan, PhD

The post Laundering Public Health: Using Autism to Revive Eugenics appeared first on Bioethics Today.

This essay is a part of our “In the News…” series, where bioethicists give their take on popular news stories.

 The medical record rarely makes headlines. In the Lindsay Clancy murder trial, however, the medical record has become part of the evidence used to understand the mental state of a mother accused of killing her three children.

In January 2023, Clancy was accused of strangling her three children in the family’s Massachusetts home before attempting suicide. Clancy survived the suicide attempt and has pleaded not guilty to murder by reason of insanity. Her trial began on July 27, 2026, in which her defense argued that she was experiencing severe mental illness, including postpartum psychosis, and therefore was not criminally responsible for her actions. The prosecution has argued that the killings were deliberate and premeditated. Consequently, testimony about Clancy’s psychiatric symptoms, diagnoses, medications, and treatment in the months preceding the deaths has become central to the trial, with numerous medical professionals testifying.

Among the many clinicians whose treatment of Clancy has been examined during this trial is psychiatrist Jennifer Tufts, who had treated Clancy for months leading up to the alleged murder. On August 10, Tufts was cross-examined about her treatment of Clancy in the months preceding the deaths of her three children. During questioning, Clancy’s defense attorney, Kevin Reddington, referred to a note in which Tufts documented “pressured speech.” Tufts testified that Clancy did not have pressured speech; however, her note stated “pressured speech.” When Reddington challenged Tufts about the discrepancy between her testimony and the language in her note, Tufts responded, “I don’t care what it says. I know what I meant.” She subsequently clarified that she had written the note but maintained that Reddington had misinterpreted it.

The exchange illustrates an ethical issue that extends well beyond this particular case and serves as a great reminder of clinicians’ responsibility to document accurately and clearly in the medical record.

Clinical documentation is often discussed in terms of accuracy, completeness, billing, liability, or regulatory compliance. These are important considerations, but they do not exhaust the ethical significance of the medical record. Documentation is also a form of clinical communication. Information gathered and interpreted by one clinician becomes available to others who may subsequently participate in a patient’s care. The record, therefore, carries an ethical obligation similar to other forms of professional communication: information should be represented truthfully, with sufficient precision for its clinical purpose, and in a manner that does not create a misleading impression.

This creates an important distinction between what a clinician intended to communicate and what the record actually communicates. A clinician may know what was intended when a note was written. A subsequent clinician does not have access to that intention. The subsequent clinician has access to the words documented in the record. If those words reasonably communicate something different from what the author intended, the discrepancy becomes clinically and ethically significant.

The ethical obligations associated with clinical documentation can be understood through several familiar principles. Veracity requires clinicians to represent clinical information truthfully. Nonmaleficence requires consideration of the potential harms that may result when inaccurate or misleading information is introduced into a patient’s record and subsequently relied upon. Fidelity is also relevant because patients and clinicians depend upon the medical record to communicate information across professional and temporal boundaries. Documentation, therefore, participates in relationships of trust not only between clinicians and patients but also among members of the healthcare team.

The Clancy trial provides an unusually visible illustration because the medical record is now being examined in a courtroom. Yet the ethical issue does not depend upon litigation. Every clinical record is potentially a handoff to someone who was not present for the original encounter. The author may not be available to explain what a particular phrase meant, and the patient should not bear the consequences of ambiguity that could reasonably have been avoided through more precise documentation and attention to detail.

The relevant question for clinicians, therefore, is not simply whether they know what they meant when documenting an encounter. The more important question is whether another reasonable clinician reading the record would understand what was meant. If the answer is uncertain, the responsibility rests with the author to improve the documentation rather than with the subsequent reader to reconstruct the author’s intention.

Documentation is part of patient care. By entering information into the medical record, clinicians create a representation of a patient’s clinical history that will inform the work of others. That representation carries ethical obligations of accuracy, clarity, and fidelity to what was actually observed and assessed. “I know what I meant” may explain a clinician’s intention, but intention alone does not determine what a medical record communicates. The ethical responsibility of clinical documentation is to ensure that the record communicates the patient’s clinical reality as accurately and clearly as possible without room for interpretation, including to those who will read it after the author is no longer present to explain it.

The Clancy trial highlights the potential consequences of imprecise clinical documentation and offers a broader wake-up call for clinicians: a medical record may one day be scrutinized far beyond the clinical setting. Clinicians cannot know whether a note will be read by another member of the care team years later, examined in litigation, or, as in this case, displayed before the public and scrutinized in a courtroom. The ethical obligation is therefore not simply to know what was meant, but to document it accurately and clearly enough that the record does not require the author to explain what the words were intended to mean.

Mariah Chobany, PhD, HEC-C is a Clinical Ethicist at Sanford Health

The post In the News…“I Know What I Meant:” The Ethical Responsibility of Clinical Documentation appeared first on Bioethics Today.