When the doctor’s note from my daughter’s wellness visit to the hospital was posted on our patient portal, I discovered that the doctor’s AI notetaker had erroneously entered ‘alcohol’ as the ointment applied to a dry skin patch on my daughter’s face, when in fact, my response to the doctor’s question of what I applied to my daughter’s face was ‘Aquaphor.’ Not only did the AI notetaker replace Aquaphor with alcohol, but the scenario revealed that the doctor was probably not actively listening to my responses, perhaps because the AI notetaker used for recording had also been inadvertently delegated the task of active listening.

The integration of frontier Artificial Intelligence (AI) systems into healthcare and medical practices may have brought enhanced productivity and efficiency in the delivery of healthcare services; however, the focus of this essay is when the integration of AI into healthcare takes away more than it gives or leads to avoidable errors, like the replacement of “alcohol” with “Aquaphor” in a note.

AI is currently used by hospitals for management, administration, clinical decision-making, diagnosis, predicting patient outcomes, and personalizing treatment plans. Generative AI (GenAI) tools are used for various tasks, including generating clinical notes, recording inpatient visits, and summarizing telehealth transcripts. For example, Microsoft’s Dragon Ambient eXperience (DAX) copilot is a Generative AI tool used in healthcare. It was launched in 2023 and is used by close to 1,000 clinicians in the US, offering automated documentation of patient visits based on voice recordings, among other capabilities. Furthermore, Dax Copilot is integrated with Epic, a widely used electronic health record platform used by over 40% of hospitals in the US.

When emphasis is placed on efficiency optimization in a healthcare context, the question of what is gained and what is lost becomes important. Gen AI systems in healthcare  is increasingly mediating how clinicians capture and create patient-related documentation through the diverse capabilities and intuitiveness built into the AI systems. It follows that this integration of Gen AI and other frontier AI systems into healthcare will come with an eventual decline in a clinician’s dexterity and skills necessary for the optimal delivery of health care, an example of which is active listening, which is very important for doctor-patient encounters.

When AI notetakers become commonplace in clinical encounters, listening to the patient almost becomes the same as recording the patient (of course, after consent has been given), and when doctors delegate listening to the patient’s concerns to AI notetakers, the need to truly listen, actively and intently, to the concerns and responses of the patient reduces. When that happens, efficiency and productivity are unintentionally prioritized over quality of interaction, and that is where the challenge lies.

Doctor-patient encounters often involve nuanced, personal, and humane forms of person-to-person communication that can be lost on AI systems. There are ways in which words are said, with certain types of body language and non-verbal cues that will be almost impossible for AI systems to capture or decipher. When we increasingly allow AI systems to mediate such interactions, some things are gained and some things are lost. Efficiency and productivity are gained, while a genuine human-to-human connection is lost. Furthermore, possible overreliance on AI tools in the example with my daughter and I left the clinician in a place where the accuracy of the AI notetaker was not questioned. It doesn’t take a medical degree for anyone to critically question why a person would think of, let alone apply alcohol to the face of a 6-month-old baby, but that sort of concern can only be realized within a human-to-human conversational context. 

While using technology certainly has its benefits, it is very important that clinicians themselves take seriously their responsibility to review the summaries and notes produced by the AI tools, and that any errors should be caught at the review phase. My initial response to the error in the doctor’s note was to call out the doctor (and her assistants) for the error and ask how it was possible that such a mistake was not captured and corrected before the note was signed off and posted to our patient portal. But knowing what I know about AI and agentic systems, especially Gen AI and Large Language Models (LLMs), catching such errors is mostly easier said than done.

By design and functionality, Gen AI and LLMs that operate through AI note takers are built to be as convincing as possible, so that whatever is produced is almost believed to be accurate at face value. Gen AI systems have the tendency to sometimes generate and manufacture non-existent information and present it as factually correct to the unsuspecting user. A study conducted by a Boston University professor revealed that most workers who used agentic AI systems were less likely to trust their corrections of the questionable output produced by the AI systems.  While the study was conducted in a business work environment, when used day in, day out for several months or years in a clinical setting, clinicians are very likely to be less inclined to doubt the output produced by AI note-takers. Moreover, a skill like active listening is best developed and honed when it is put to constant use, and it is the grit developed from mastering such a skill over time that will most likely come together in developing the thoroughness and confidence needed to double-check the output of a seemingly efficient AI notetaker, especially when the AI tool has been praised for reliability and accuracy by its developers and investors.

Recently, there has been an increase in billion-dollar investments in deploying AI in healthcare, leading to greater interest and adoption of AI across many healthcare systems and exerting subtle pressure on clinicians to adapt to these technologies, some of whom may not even be able to decline. When technologically-driven adaptive skills are prioritized for clinicians to learn, other humane, personal, and non-technical skills will be unintentionally dismissed.

Therefore, rather than emphasizing technological adoption, more effort needs to be directed towards ensuring that the very skills necessary to provide excellent and humane patient care are not neglected. If doctors unknowingly delegate active listening to AI note takers, an overreliance on those AI systems over time will leave clinicians lagging behind in actively listening and eventually dulling foundational human communication skills. Nobody wants the services of a doctor who does not actively listen to their concerns or misses out on important details because the task of actively listening has been delegated to an AI tool. Over time, clinicians may naturally relent in honing their active listening and other humane skills.

To prevent this, a framework of collaboration should be developed. The efficiency and productivity advanced by AI in healthcare are best achieved when the human capabilities of clinicians are improved and supported. Clinicians should be encouraged to engage in activities that help hone human skills of effective listening, effective communication, and human-centered interactions. Efficiency and optimal productivity through AI must be balanced with human connection and humane quality of care, especially because many patients expect that human-to-human connection from their clinicians. Increased productivity should not be engineered at the expense of quality care within doctor-patient interactions.

 Blessing T. Adewuyi, PhD is an Instructor at the University of Georgia.

The post From Aquaphor to Alcohol: Can Overreliance on AI Lead to a Decline in Human Connection Within Healthcare? appeared first on Bioethics Today.

Kristen Biel had breast cancer and her Catholic school refused to renew her contract. Miriam Grussgot had a brain tumor and her Jewish school fired her. Both wished to seek recourse in the courts for alleged discrimination. Just a month ago, a Catholic school refused to renew the contract of a teacher who uses a wheelchair and immediately advertised for a person who can walk, and lawyers don’t want to take the case. Over 328,000 teachers work at the roughly 23,000 religiously affiliated schools in the United States. Why don’t teachers at religious schools have access to the courts for employment discrimination cases?

In 2020, the Supreme Court broadened the ministerial exception, a little-known loophole allowing religious institutions to discriminate against their employees despite generally applicable federal laws. The exception holds that to freely exercise their religion, religious institutions must be able to hire and fire “ministers” for any or no reason. The exception is overly broad in two ways: it bars all discrimination claims regardless of relevance to religious tenets; and it applies to secular lay employees whose primary job duties are not religious in nature. While the controlling case was decided several years ago, the chilling effects are now in full swing.

How we got here

In 2012, in Hosanna-Tabor Evangelical Lutheran Church and School v. EEOC, the Supreme Court applied a four-factor function test to the ministerial exception: religious title, e.g., minister; religious training; whether the employee held herself out to be a minister; and whether job duties included conveying the church’s religious message. In that case, the disabled teacher’s claim was precluded because of her deep religious training, her title, position, and duties.

In 2020, in Our Lady of Guadalupe School v. Morrissey-Berru, a lay teacher whose primary duties were teaching secular classes alleged discrimination. The Court considered a companion case, St. James School v. Biel at the same time. Morrissey-Berru claimed age discrimination and Biel claimed she was fired due to her breast cancer. The Court held the ministerial exception applied to the teachers despite their lack of ministerial title, minimal religious training, and secular duties. Therefore, all discrimination claims were barred before any discussion of the merits. Both Morrissey-Berru and Biel taught primary subjects including math, science, English, spelling, etc. and one also taught religion. Neither had extensive religious training.

Furthermore, the Court took the teeth out of its 2012 function test by suggesting churches are the only entities well-positioned to explain the ministerial function and that no strict formulas should apply. The potential wrongdoer now holds all the cards.

Biel eventually died of her cancer, unemployed. Justices Sotomayor, joined by Justice Ginsburg, began her dissent saying, “Two employers fired their employees allegedly because one had breast cancer and the other was elderly.” The dissent notes that the decision interprets the word “minister” so broadly that “it strips thousands of schoolteachers of their legal protections.” All sorts of employment discrimination cases, including disability, are now routinely dismissed throughout the US from district to circuit courts. When a religious institution wants to terminate employment or fail to renew a contract due to sicknesses like cancer or disabilities like an inability to walk unassisted, the church is free to do so legally. In most settings, religious exemptions from generally applicable laws apply to religious circumstances, i.e., the entity wanting an exception has a reason related to its ability to practice religion or hold a belief. Yet here, the teachers were not fired for actions that interfered with the religious institutions’ ability to practice their religions. Generally, having a disability or becoming old is not inconsistent with church doctrine or tenets.

Why It Matters

Those with disabilities face significant employment discrimination. Only 22 percent of people with disabilities are employed compared to 65 percent of those without. The firing and failing to renew contracts negatively impact not just the ability to earn money and important benefits like health insurance, but also the ability to participate in working life with its social, educational, and cognitive benefits.

As it stands, disabled teachers cannot feel secure in their employment at religious schools. While it is too late for Kristen Biel, the ministerial exception has spun out of control. Ethically speaking, the Americans with Disabilities Act should apply broadly and the ministerial exception narrowly, only to actual ministerial workers terminated for reasons relevant to religious tenets.

What to do

Left without access to the courts, teachers should approach accrediting organizations and challenge them to take a stand. Accreditors are not the government and do not owe any organization religious freedom to discriminate against disabled teachers. Another appropriate redress may be media attention to individual cases.

Free exercise of religion cases generally address permitting otherwise impermissible acts that religion requires (like allowing a religious incarcerated person to have a beard in conflict with a rule prohibiting one). There is no relationship between firing the disabled and the tenets of most religions; there certainly isn’t a religious calling to do so and not doing so would hardly seem to burden a religious institution in a religion-relevant way. For now, freedom of religion allows the religious to fire disabled teachers simply because they are disabled.

Anne Zimmerman, JD, MS is a Lecturer at Columbia University and Editor-in-Chief of Voices in Bioethics

The post Holy Immunity: The Ministerial Exception and Teacher Discrimination appeared first on Bioethics Today.

Bioethicists have become very good at arguing for transparency. We encourage institutions to disclose conflicts of interest, explain difficult decisions, communicate uncertainty, and justify ethical trade-offs. These are all necessary, even essential — yet they are not enough.

Transparency helps explain decisions. It does not, by itself, create the relationships required for public trust. Bioethics should therefore move beyond transparency toward a more demanding ethical practice: public enrolment.

Many of the most pressing challenges in contemporary bioethics depend on relationships that extend over years. Public health authorities ask communities to participate in vaccination campaigns, population screening programs, and epidemiological surveillance. Health systems increasingly rely on artificial intelligence to support diagnosis and resource allocation. Researchers ask citizens to contribute health data to improve care for future patients.

In every case, institutions are asking people not simply to accept a decision, but to remain engaged in an ongoing collective project. Transparency alone cannot sustain that engagement.

Explanation does not create a relationship

Being told why a decision was made, even when the explanation is transparent and offered in good faith, does not necessarily make people feel included in the process that produced it. Much of what passes for public engagement remains unidirectional: authorities speak, and the public listens. Feedback, when it is invited, is often symbolic — an opportunity to react rather than to influence outcomes.

A common response is to call for more participation. Yet participation itself is frequently treated as a procedural requirement: hold a consultation, invite comments, convene an advisory panel, and move on. Once the exercise ends, so too does the relationship.

Public trust does not work that way.

Relationships grow, stabilize, or weaken depending on whether the people involved continue to find value in them. Friendships dissolve when they become one-sided. Professional collaborations end when expectations are repeatedly frustrated. Institutions likewise lose legitimacy when citizens no longer believe that their concerns, values, or interests matter.

Public trust follows the same logic. It is not a resource that institutions accumulate once and then draw upon whenever cooperation is needed. It is continually shaped by interactions that either strengthen or weaken the relationship. Institutions earn confidence when they demonstrate, over time, that they remain responsive to the communities they serve. People remain engaged when the relationship continues to feel reciprocal, meaningful, and worth sustaining.

Public enrolment is relational work

Public enrolment is the ongoing ethical work of building and sustaining relationships in which institutions and communities recognize one another as legitimate participants in collective decision-making.

It does not mean persuading people to support a predetermined agenda. Nor does it require that every interest be satisfied or every disagreement resolved. It means creating relationships in which participants can continue to see at least some of their interests and values reflected in the exchange. People need evidence that their participation matters and that it can influence what institutions do.

Public enrolment requires more than explaining final decisions. Institutions must show how decisions were reached, where public perspectives entered the process, and how competing interests were weighed. They must make room for and accept meaningful disagreement, not treat it as failure to be avoided. They must also recognize that policies sometimes need to change when the circumstances, evidence, or relationships supporting them change.

Public enrolment, therefore, depends on reciprocity. Institutions cannot ask the public to trust them while treating citizens as passive recipients of expert judgment. Trusting the public means recognizing people as moral agents capable of understanding reasons, uncertainty, and constraints, even when they disagree with the conclusions of decision-makers.

It also means accepting that distrust may be reasonable. People may have good reasons to distrust institutions when decisions are opaque, exclusionary, poorly explained, or disconnected from their lived experience. The ethical task is not to eliminate distrust through better messaging, but to create institutions and relationships that are worthy of trust.

From defensible decisions to ethical relationships

Public enrolment is important in many domains of public policy.

Vaccination campaigns depend not only on persuasive evidence but on sustained confidence in public health professionals and institutions. Population screening programs require people to believe that benefits, burdens, and follow-up responsibilities are justified and fairly distributed. Epidemiological surveillance depends on citizens’ understanding how data will serve collective purposes and how personal information will be protected. AI in healthcare requires confidence that decisions remain accountable to human values rather than being hidden behind opaque technical systems.

These are not isolated ethical choices. They are ongoing relationships between institutions and the publics they serve. Every decision, consultation, policy revision, and institutional response can strengthen or weaken those relationships.

When trust collapses, the consequences extend beyond a single policy. People may stop following guidance because the process that produced it no longer feels legitimate. Cooperation declines, polarization deepens, and collective initiatives become harder to sustain, even when their goals are broadly shared.

It is tempting in such moments to blame misinformation or public irrationality. But doing so avoids a more important ethical question: have institutions treated the public as partners in collective decision-making, or merely as targets of persuasion?

Bioethics has traditionally understood its public role as helping institutions make ethically defensible decisions and explain them clearly. That remains indispensable. Ethical analysis can articulate the values and interests at stake, clarify trade-offs, expose hidden assumptions, and make difficult choices intelligible to all those involved.

If trust is relational rather than transactional, bioethics cannot stop once a decision has been justified. It must also attend to how relationships between institutions and publics are built, sustained, repaired, and sometimes transformed.

The challenge for bioethics is therefore to improve not only the ethics of decision-making, but also the ethics of relationships.

Transparency helps explain decisions. Public enrolment helps sustain the relationships through which those decisions remain legitimate.

Bryn Williams-Jones, PhD is Professor of bioethics and Director of the Department of Social and Preventive Medicine at the School of Public Health, Université de Montréal

The post Beyond Transparency: Why Bioethics Must Move Toward Public Enrolment appeared first on Bioethics Today.

“Because the country was so inaccessible, disabled people had a hard time getting out and doing things—which made us invisible. So we were easy to discount and ignore. Until institutions were forced to accommodate us we would remain locked out and invisible—and as long as we were locked out and invisible, no one would see our true force and would dismiss us.”
― Judith Heumann, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist

With several highly anticipated rulings closing out the Supreme Court’s 2025-2026 term, a recent Department of Justice (DOJ) opinion greatly impacting disability rights has already faded into the background. Notably, the June 18 2026, DOJ slip opinion undermines the integration mandate that ushered in a new era of deinstitutionalization for individuals with disabilities.

In the past, individuals with various disabilities (especially cognitive ones) were routinely institutionalized. Many families could not afford to support disabled relatives. Beyond negligible governmental supports to keep disabled individuals home with their families, social stigma was often insurmountable, arguably because people with disabilities weren’t visible in communities. But then, a legal foundation was established, mandating federally-funded economic support that would reintegrate disabled people within their communities. Now, despite this foundation [Section 504 of the Rehabilitation Act of 1973, the Americans with Disabilities Act (ADA), and the 1999 Olmstead decision by the Supreme Court reading Section 504 and the ADA together], the current administration is arguing that integration is in fact not required, finding that, in Olmstead: “the Supreme Court did not hold that section 504 of the Rehabilitation Act or Title II of the ADA require states to treat mentally disabled patients in the most integrated setting appropriate to their needs.” The message sent by this currently non-binding opinion is that long-relied-upon home and community supports are not guaranteed to those with physical and/or cognitive disabilities, harkening back to the horrors of settings like Willowbrook and other infamous state-run institutions.

To explain the current administration’s stance on disability integration, political scientists might invoke the Overton Window. which states that certain ideas or discourse occupy a certain window of what the public considers acceptable. The community integration mandate seemed to be settled policy. Yet the current administration has sought to shift the Overton Window to a place where unorthodox or even harmful ideas are injected directly into mainstream discourse, in a manner that feels almost like gaslighting. Even though the memo doesn’t change the aforementioned laws, it clearly signals that the current administration does not support the spirit, if not the letter, of those laws. As one disability lawyer stated:

“You can’t change the law through fiat. But I do think [this memo] signals a frontal attack on basic tenets of the disability rights movement.” 

Many in the disability rights community are concerned that the current administration’s lack of support for community integration may lead to the re-institutionalization of some disabled individuals and to a limitation on access to a range of community and home supports. The administration’s argument is that it’s better to leave these decisions to the states to craft policies “encouraging civil commitment of individuals with mental illness who pose risks to themselves or the public or are living on the streets and cannot care for themselves.” Leaving this to the states will create a patchwork of policies where some states may not vigorously enforce the integration mandate and ultimately may reduce or limit efforts to sustain, improve and/or create community supports.

Ethically, this is deeply concerning. Recall a time in our not-so-distant past when the application of integration policies was left up to states, rather than federally protected. How a person was treated–what spaces they could access, where they sat on a bus, what drinking fountains they could use–was largely determined by where they happened to live. The motivation behind integration policies for disabled individuals is similar to the motivation behind the Civil Rights Movement: separate is not equal, and diversity is a component of human difference worth celebrating, not locking behind closed doors, hidden from view.

Proponents of the disability justice movement have long argued that disability is a mere, not a bad, difference, just like a person’s racial identity. Being a racial minority, or being disabled, is stigmatized only insofar as societies are racist or ableist. Treating minoritized individuals as morally and legally on par with those in the majority (or with those in power) reflects a fundamental commitment to equality and to social justice more broadly. Further, diversity is unavoidable. Dozens of cultures, races, sexual and gender identities, and abilities come together in the United States, and at this point, erasing that diversity hardly seems desirable, let alone likely.

For those with the sorts of disabilities that could lead to re-institutionalization, speaking up and speaking out is not an option. Individuals with cognitive, intellectual, developmental, and psychiatric disabilities are particularly vulnerable because they have disabilities that impact their ability to live independently, to speak for themselves, and to understand and apply laws that might protect their rights. Many do not even have recourse through voting. Insofar as we have a duty to protect vulnerable members of our communities, like children and the elderly, we also have a duty to protect people with the sorts of disabilities that make them more dependent on societal supports than the average person.

If virtuous motivation isn’t enough for some to be alarmed by the DOJ’s June 18 memo, consider the fact that any of us can become disabled at any point. Acquiring a disability is not uncommon, with 1 in 4 individuals having a disability at some point in their lives. By this line of reasoning, we all have reason to fear a potential threat to our federally protected rights to accommodation and integration within our communities. Plus, improving communities for those with disabilities improves the community for all. Subtitles, elevators, curb cuts, and bus lifts are just a few of the ways that community changes for people with disabilities benefit everyone.

Finally, consider the value of autonomy. We all want to make our own choices about what we do, who we spend time with, where we live, and how we engage with our communities. Home and community supports ensure disabled people can develop meaningful relationships within their communities and self-determine to the extent of their abilities. Existing legislation protects education, housing, employment, and social participation. Undermining these laws would deny individuals fundamental rights to privacy, association, and, more broadly, their autonomy. If we want to be the type of society that values its members and their diversity, that pushes back against the idea that separate spaces for different types of people are acceptable, and that protects the vulnerable amongst us, we must push back against the ideology promoted by the June 18 DOJ slip opinion.

Ally Peabody Smith, PhD, is an Assistant Professor in the Department of Population Health at Lehigh University.

Nanette Elster, JD, MPH, is a Professor at the Neiswanger Institute for Bioethics, Loyola University Chicago Stritch School of Medicine and is the John B. Francis Co-Chair in Bioethics at the Center for Practical Bioethics.

Kayhan Parsi, JD, PhD, is Professor and Graduate Program Director at the Neiswanger Institute for Bioethics, Loyola University Chicago Stritch School of Medicine and is the John B. Francis Co-Chair in Bioethics at the Center for Practical Bioethics.

The post The Slippery Slope of the DOJ Slip Opinion: A Threat to Disability Integration appeared first on Bioethics Today.

A dementia directive — sometimes called an advance directive or living will — is a document in which a person, while still mentally capable, writes down their wishes for medical care if they can no longer communicate them. Think of it as a letter to the future: this is who I am, this is what matters to me, this is the care I want if I can no longer ask for it myself.

Planning ahead is essential. But here is the problem, most conversations about dementia directives overlook: a directive is only as effective as the system into which it enters — the interlocking world of nursing homes, hospitals, Medicare Advantage plans, Medicaid agencies, hospice providers, and AI-powered software tools that increasingly guide clinical decisions. That system operates according to its own logic. It is often indifferent to any single person’s documented wishes. Individual planning, by itself, does not solve that problem. Getting the governance right does.

A Structural Problem Dressed as a Personal Failure

The emphasis on personal planning quietly shifts moral responsibility from society to the individual. If something goes wrong — if a nursing home ignores a resident’s directive, if a hospice pursues aggressive treatment against documented wishes — the first question asked is whether the person completed the right forms. The system escapes scrutiny.

By the time most people develop moderate or severe dementia, they are navigating a maze of institutions, each operating under its own regulations, financial incentives, and staffing constraints. A directive enters this world. It does not replace it. Even affluent families face emergency departments that follow institutional protocols, staffing shortages, and insurance authorization requirements. For everyone else, the gap is far greater. A directive cannot create home care workers where none exist, or nursing homes with sufficient staff to deliver individualized care.

The Governance Dimension

Think of a dementia directive as a governance document — an attempt by a competent person to preserve their authority across a future moment when they can no longer speak for themselves. Whether that works depends not on the quality of the document, but on the integrity, capacity, and accountability of the institutions that receive it.

The governance challenge has three parts. First, institutions must be required to actually know what is in a person’s directive — not merely file it. Second, they must have the workforce to act on it; a staff member caring for fourteen residents cannot implement nuanced care preferences regardless of what the paperwork says. Third, AI-powered decision tools must reinforce rather than displace the person’s documented wishes, with conflicts surfaced and resolved through human judgment accountable to the person being served.

Ethicists have spent decades debating a hard question: when a person with advanced dementia seems content in the present moment, should we honor what they asked for years ago, or respond to what they appear to want now? It is an important debate. But it shares a blind spot — it focuses on what should happen inside an institution while leaving largely unexamined whether that institution has the capacity and accountability to make it happen at all. We have sophisticated frameworks for what the right decision is. We have almost no framework for holding institutions responsible for making it.

The federal repeal of minimum nursing home staffing standards in December 2025 — a rule that would have required 3.48 hours of nursing care per resident per day — is a case study in what governance failure looks like in practice. The CARF 2026 AI Governance Standards point in the right direction, but accreditation guidelines without regulatory enforcement are suggestions, not accountability.

Four Concrete Steps

First, advance directive integration should be a mandatory accreditation standard for all licensed long-term care providers. Staffing adequacy must be linked explicitly to directive implementation — you cannot honor a resident’s preferences without sufficient staff. Transparency requirements for AI tools should mandate disclosure when algorithmic recommendations conflict with documented wishes. And lastly, Medicaid home- and community-based service capacity must be treated as an advance directive issue: a preference for home-based care is meaningless if the workers don’t exist to provide it.

Conclusion

Individual planning remains essential. Every person approaching later life should complete a dementia directive expressing their values and care preferences with specificity. But individual planning should never become the excuse for neglecting the public systems upon which nearly everyone ultimately depends.

Dementia is not simply a private family matter. It is a public test of whether our healthcare and long-term care systems can preserve personhood when memory and independence begin to fade. The goal is not merely to help people write down their wishes. It is to build institutions — adequately staffed, properly financed, genuinely accountable — that can honor those wishes regardless of income or circumstance. Until we do, individual planning — while indispensable — will never be enough.

James A. Lomastro, PhD was healthcare administrator, a national CARF International surveyor, and co-author of CARF’s 2026 AI Governance Standards

Conflict of Interest: The author is a co-author of the CARF International AI Governance Standards cited in this essay and serves as a national CARF surveyor. He has no financial interest in CARF International.

AI Disclosure: The author used Claude (Anthropic) as an augmented intelligence tool to revise this draft. All analysis, argument, and editorial judgments are the author’s own.

The post Individual Planning Is Not Enough: Dementia Directives and the Governance Challenge appeared first on Bioethics Today.

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

Jesse Gray’s article “On Mobile Health, Empowerment, and the Limits of Task Shifting in Healthcare,” has much to recommend it. Let me single out two features for particular praise: First, treating the idea of task-shifting as one for normative interrogation by bioethicists is very useful. While individual instances of the phenomenon, like at-home individual glucose monitoring technologies, might draw our attention, the article usefully frames the larger phenomenon as worth thinking about in more totality. Second, I think it takes a hard look at the narrative of patient “empowerment.” Like many good articles it raises more questions than it can answer, and I will itemize a few—some are more interrogative while others spaces for extension.

First, I want to push on the question of baselines. We get a loose definition of task-shifting early on the paper as the “shifting medical tasks onto patients, technology, and less-skilled health personnel, these policies aim to reduce burdens on health systems and allow them to provide more equitable care. Gray also defines an adjacent and arguably more central concept of “[t]ask expanding” technologies, that “encourage patients, and other nonmedical experts, to take on tasks once reserved for traditional medical actors” (emphasis added).

To say a task has been “shifted” or “expanded” in a way that has some bioethical oomph requires a conception of where the task belongs, a defense of a “baseline” would be the idiom legal scholars would. Where do Gray’s baselines come from? At some points in the article’s descriptive portions, it appears the baseline is provided by history. Where (between patient and provider) was this task located, and where does the technology relocate it? As a first approximation, that is not a bad way to define the concept for descriptive purposes—although we would still need normative work on why that historical baseline matters, more on that in a moment.

But, even as a descriptive matter, a complication is that many tasks we now think of as medical have shifted a good deal over the course of history and across cultures. When I studied hospital systems across the world for my 2014 book Patients with Passports: Medical Tourism, Law and Ethics, I was struck by how many of the functions undertaken by nurses and other medical workers in the U.S. at the time were undertaken by family members in India, for example. Park et al., for example note that in many Asian countries the tasks undertaken by family members in hospital care include “ (1) direct contact activities (i.e. changing the position of the patient, toileting, sponging, assisting with ambulation); (2) indirect contact (i.e. administering medication, making beds), and (3) aerosol-generating procedures (i.e. feeding via NG tube, and suctioning) to their sick family members at the bedside.” Similarly, which tasks belong with the medical and allied professions has also shifted historically. Pregnancy and childbirth are excellent examples: historically doctors were not present at many childbirths unless there was an emergency and family and community members had a much larger role in contraception and fertility help.

At other times, it appears that Gray means to call on a normative baseline either standing alone or as a gloss or constraint on the historical. Gray discusses “patient wellbeing and safety” as criteria for normative justification in a beneficence frame. When it comes to autonomy, he discusses making sure patients are informed and freely choosing, “enabling agents to do what they truly care about”, and even (quite novelly) “further[ing] the autonomous interests of healthcare providers.” He quickly moves on to examples and legal categories such as general wellness products, but this construction of the normative baseline and its relationship is fertile ground for more development. In particular, I wondered if Gray’s project would benefit from engagement with questions about the moral limits of medicine, questions that sometimes come up in discussions of what is a “disease,” the treatment-enhancement line, and whether medicine’s focus on avoiding or mitigating disease or improving well-being.

A third baseline is also introduced, when Gray writes that “task shifting [must be] predicated on reliable and coherent processes epistemically justified.” Gray seems to have a hopeful implicit assumption that much of what goes on in medical practice is “predicated on reliable and coherent processes” as the baseline and that the examples he discusses are exceptional by contrast. Unfortunately, that assumption may not uniformly be true across medicine. Consider the American Board of Internal Medicine Foundation’s Choosing Wisely campaign, which began in 2012 “with nine national specialty societies (representing 375,000 clinicians) offering 45 examples of tests or treatments that were commonly used in their fields but lacked strong supporting evidence”.

A different issue with this epistemic baseline is to question what work it is doing beyond the portion of the normative baseline Gray associates with beneficence. That is, the reliability and coherence of the process used seems to matter normatively to us because of its contribution to patient well-being (and, we might add, avoidance of harm). So the epistemic constraint seems like just a way to get at the normative constraint, which is what really does the work for the argument. This leaves slightly underspecified how Gray thinks about the normative and the epistemic criteria working together. Within the section on normative justification, Gray seems at pains to make clear that beneficence is not the only normative justification, emphasizing that “it may be permissible to deprioritize beneficence to pursue other moral aims” and that “beneficence is just one value among many.” But if I am right to associate the epistemic criteria with beneficence for its moral force, then this dethroning of beneficence is a little hard to square with the fact that he describes task-shifting as having to be both epistemically and normatively justified.

The back half of the article moves from theory to more practical questions as applied to examples. Here I have two primary observations: First, related to some of the discussion above about baselines, it is not always clear what work the concept of task shifting or expanding is doing as part of the argument structure. As to specific examples, Gray, appropriately raises concerns about things like reliability, evidence base, and the feeding of a narrative as to empowerment that the author thinks are problematic. If task shifting or expanding is just an intermediate conclusion, a label for this bundle, so be it. But there are times when it feels like the fact that the task has been shifted or expanded is supposed to do its own normative work, but it is not clear what the work Gray thinks it is doing. Otherwise put, if the article was written without ever using the term task shifting or expanding but the more specific concerns, would the result be stylistic or substantive?

Second, Gray draws, among other things, on my work with David Simon and Carmel Shachar to critique the FDA line drawing between medical devices and general wellness products. Unsurprisingly given our prior work, I am broadly in agreement that this line drawing is unsatisfying and encourages developers to engage in a practice we have called “skating the line.” But it is important to recognize that even if an mHealth medical intervention falls on the medical device and not the general wellness side of the line, that may not have the kind of “epistemic justification” Gray is looking for. The vast majority of AI/ML-enabled products that are classified as devices are considered low to moderate risk devices and reach the U.S. market through the 510(k) pathway.¹ That means that clearance by FDA does not require “provid[ing] reasonable assurance of its safety and effectiveness” (21 U.S.C. 360c(a) (1)(C)), often through clinical trials, but instead showing there is a predicate device that is substantially equivalent to their device. But many of these “are based on predicates that are based on other predicates, and so on, even down to a predicate that was launched before 28 May 1976, at a time when the safety and effectiveness of devices had not yet been assessed”. When it comes to harm from FDA-cleared AI/ML medical devices, there is significant data missing on the reporting of adverse events suggesting gaps in postmarket surveillance, and that the existing reporting categories leave much to be desired in terms of allowing evaluation of safety. All this is to say that under the desiderata Gray sets out in the article, while classification as a medical device rather than general wellness product is certainly better, it is far from a panacea.

Notes

Gray seems view the category of interest as mHealth. mHealth is not completely coincident with AI/ML, to be sure, but there is a good amount of overlap and for the latter we have good data analyses at FDA so that is what I reference, while acknowledging the distinction.

I. Glenn Cohen, JD

The post Shifting Tasks, Shifting Baselines: Mobile Health and the Limits of Empowerment appeared first on Bioethics Today.

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

In February 2026, leaders from industry, government, policy, and academia gathered at New York University for a Summit on Building Governance Infrastructure for Frontier AI. The aim was ambitious and pressing: to develop governance principles for frontier AI systems before the technology outpaces the institutions responsible for overseeing it.

The stakes are high. Frontier AIs are agentic systems capable of interacting with and reshaping the world in countless ways. They can plan multi-step tasks, use external tools, remember across interactions, and operate with growing independence. Promising to deliver beneficial advancements, frontier AIs will soon be embedded in our vehicles, financial systems, schools, and, most relevant here, our hospitals.

Traditional AI systems are narrower in scope: a diagnostic algorithm, a scheduling optimizer, a billing classifier. Frontier AI systems, particularly agentic ones, represent something categorically different. They raise at least four distinct governance issues that challenge our current ethical and regulatory frameworks.

Dynamism: The risks of a frontier AI system are not static. These systems update, drift, and develop emergent behaviors. A system deemed low-risk at the point of deployment does not remain low-risk by virtue of that initial classification alone.

Autonomy: As AI systems carry out longer chains of actions with less human oversight, the potential for unintended consequences grows, partly because the system may begin operating well beyond its original scope.

Interaction: When multiple AI systems interact, coordinating tasks, sharing data, triggering each other’s actions, they can produce systemic risks that no single system would generate on its own. Governance must therefore address the ecosystem as a whole, not just individual tools in isolation.

Context-dependence: Risk emerges from the interaction between a system’s capabilities and its deployment context, user population, level of autonomy, and the reversibility of its decisions. Identical systems deployed in different settings may call for fundamentally different governance approaches.

These are not hypothetical concerns. Agentic AI systems are already at work across healthcare, and their role goes well beyond transcribing clinical notes. At Oxford University Hospitals, a multi-agent AI system called TrustedMDT is being piloted in cancer tumor boards. One agent summarizes patient records across radiology, pathology, and biomarker tests; a second determines cancer staging using international standards; and a third drafts guideline-compliant treatment plans for review by the multidisciplinary team. Epic Systems, which serves approximately thirty-eight percent of U.S. inpatient facilities and holds 325 million patient records, has deployed multiple AI agents: Emmie for patient engagement, Art for provider communications, and Penny for revenue cycle management. Hippocratic AI’s voice agents autonomously call patients to schedule screenings and tests and to handle follow-up. To date, these agents have logged over 115 million clinical patient interactions across more than fifty health systems including Cleveland Clinic, Northwestern Medicine, and Ochsner Health. A study published in NEJM AI reports that forty-three percent of surveyed health systems are already piloting agentic AI, although only three percent have moved agents in live clinical workflows. Sixty-one percent of health care technology executives report that they are building or implementing agentic AI initiatives or have secured budgets to do so, and eighty-five percent plan to increase investment over the next two to three years.

Bioethics has made important contributions to AI ethics, tackling algorithmic bias, fairness metrics, explainability, and data privacy. But frontier AI systems pose new problems that demand new structures. When an agentic system coordinates a multi-step clinical workflow with minimal oversight, the question is not just whether the algorithm is biased. The questions are: How do we govern systems whose risk profiles change over time? Who bears responsibility when harms accumulate slowly across thousands of interactions? Even today, some clinicians are beginning to defer to algorithmic recommendations. A systematic review found that in six percent of cases, clinicians overrode their own correct decisions in favor of flawed advice from decision support systems. A randomized crossover study showed that clinicians at every level of expertise were vulnerable to automation bias. Frontier AI systems, which are more persuasive, more autonomous, more deeply woven into clinical workflows, threaten to accelerate this erosion of clinical judgment considerably.

What is needed is a new kind of governance infrastructure, what we are calling AI Ethics 2.0. The first wave of AI ethics focused on properties of individual models: Is this algorithm fair? Is it transparent? Does it violate privacy? Those questions still matter. But governing frontier AI requires a shift from model-level analysis to institutional governance, and from static risk classification to dynamic, continuous oversight.

The NYU Summit’s working groups started from a blunt premise: the absence of comprehensive regulation does not excuse the absence of governance. For hospitals, this means the work cannot wait for legislation.

Much more will need to be said, but several steps are already clear. First, hospitals and health systems need to establish dedicated AI governance structures. These should not be add-ons to existing IT committees, but standing bodies with ethical, clinical, and technical expertise, and with real authority to approve, condition, suspend, or withdraw AI deployments. Currently, only eighteen percent of health systems have an enterprise-wide AI governance strategy.

Second, hospitals and health systems should implement ongoing monitoring and re-review processes. AI systems that update continuously cannot be governed by one-time approval. Health systems should build incident response plans before deployment, not after harm occurs, and should create channels for clinicians to report AI failures without professional penalty.

Third, professional associations including medical boards, nursing boards, and specialty societies should establish AI competency requirements for their members. Allowing professionals to use AI without demonstrated understanding of its limitations puts patients at risk.

Fourth, procurement should be treated as an ethical act. Health systems have compressed average AI buying cycles from 8.0 months to 6.6 months. Faster procurement means less time for governance review, less time for clinical validation, and less time for the kind of ethical scrutiny that frontier AI demands. At a minimum, procurement contracts should include transparency provisions, audit rights, incident reporting obligations, and clear allocation of liability between vendor and deployer.

AI governance is already happening in hospitals whether or not anyone calls it that. Every procurement decision, every pilot approval, every choice to let clinicians use an AI tool without formal oversight is itself a governance decision, just an unexamined one. The question is not whether hospitals will govern AI, but whether they will do so deliberately, with structures built for the challenges frontier AI presents, or whether they will continue making these decisions by default and reckon with the consequences later. Bioethics should help ensure it happens ethically, with governance structures that can adapt as the technology, the evidence, and the stakes continue to evolve.

S. Matthew Liao, PhD, and Jennifer Blumenthal-Barby, PhD

The post AI Ethics 2.0: Why Frontier AI Demands a New Governance Agenda for Healthcare appeared first on Bioethics Today.

The proposed OMB rule changes (OMB-2026-0034) are problematic and should be withdrawn or substantially altered. At a fundamental level, the rules represent an attack on the peer review process and replace it with an explicitly political, vague, and poorly defined standard and process for review that is more likely to hinder science than promote it.  

We should acknowledge the problems and limitations of peer review. The fact that grants are not blind reviewed increases the risk of bias as many studies of publication peer review have shown that author institutional affiliation, author gender, and other characteristics of the author influence the results of the peer review process.

There is a potentially deeper problem with relying on peer review. There are times when scientific consensus and opinion form based partly on evidence, but also on assumptions and values that are shared within the scientific community. Sometimes, this can lead qualified reviewers to reject views and work that challenge orthodoxy and to accept research that ought to be questioned. In the early 20^th Century, most biologists rejected the accounts of speciation that were developed by “Naturalists” who studied biogeography, paleontology, taxonomy, and evolution. Instead, the majority adopted a theory based on experimental research by Hugo de Vries that became part of the early emerging field of Mendelian genetics. It was over two decades later that scientists realized that the earlier accounts were correct as they were able to create a synthesis between genetics and evolutionary biology. Similar types of biogeographical and paleontological evidence also supported continental drift in the early 20^th century. But despite tremendous evidence supporting drift, geophysicists rejected it and it was an unpopular view until the discovery of sea floor spreading decades later won over the geophysicists.

Peer review processes are not immune to these sorts of biases. In the long run, debates internal to science usually have a way of coming around to correcting for these problems. The existence of critics of the orthodoxy remains an important and respected part of science, and these critics are often critical to the eventual shifting of scientific opinion.

There is an alternative to allowing the scientific community to work its way through what views are correct or well-supported. That is exemplified by another 20^th Century rejection of early Mendelian genetics. Trofim Lysenko was a Soviet agronomist. He rejected the emerging field of genetics and developed a broadly Lamarckian view of biology that was focused on improving agricultural yields for the Soviet empire. His proletarian background and rejection of the emerging mainstream science (as well as some early agricultural successes) won him Stalin’s support. The result was a dark history for science. Geneticists were forced to abandon their scientific views to support “the People’s Science.” Many prominent geneticists were imprisoned and others were executed. Lysenkoism may have been rejected by the international scientific community, but it was Stalin’s preferred science. The results were catastrophic. Pursuing Lysenko’s vision of science, agricultural practice contributed significantly to famine that causes millions of deaths in the Soviet Union. In the late 1950’s and early 1960’s, Mao’s Peoples Republic of China likewise based their agricultural approach on Lyskenko’s scientifically discredited views which contributed to the famine in China that also killed millions.

The key difference between these stories is that in one, the internal process of problematic orthodoxy allows for debate and exploration, and minority views can be freely expressed, and the epistemic values of science eventually resolve them. In the Lysenko case, political forces entirely external to science determine what is good science for entirely political reasons. This did not work out for the millions who lost their lives in China, Russia and other parts of the Soviet empire to say nothing of the oppression of the scientists who stood up for good science.

The proposed change to the rules rejects the centrality of peer review and the processes that make science largely work (for all its flaws) in favor of non-expert determinations of what science is politically expedient or acceptable to those in power. Scientists would potentially need to conform to a new set of answers that are politically acceptable to the current leadership. Robert F. Kennedy is not a trained scientist, nor is he a medical practitioner. He is a political appointee. The potential that his views might become a funding requirement for the scientific community is deeply concerning.

Attacking mainstream science as “junk” in favor of an undefined “gold standard science” (particularly when these attacks are largely made by non-scientists) is a sign of Lysenkoism, not valuable challenges to entrenched orthodoxy. The proposed change in the rules opens the door to American Lysenkosim.

Obviously, the fact that the federal government funds most scientific research means that it should have a say over what topics are covered and ensuring that the money is well spent. But using that as an excuse to impose substantive views about what must be true based on political views or the views of non-scientists is doomed to create bad science.

The proposed rule changes must be rejected or amended significantly.

David Magnus, PhD, is EIC of The American Journal of Bioethics

The post OMB Proposed Rule Change: The New Lysenkoism? appeared first on Bioethics Today.

We worship medicine. We put doctors on billboards, make statues of them, and name buildings and parks after them. We make hit TV shows about doctors, like The Pitt. We want physicians to be, if not our angels, then our heroes.

The idea that I would like to suggest in this blog is that this impulse to sacralize doctors is an expression of secularization. While secularization has different meanings, it is most commonly understood as the decline of religion. Often cited motivating factors for secularization include scientific progress, industrialization, urbanization, globalization, pluralism, and education. In contemporary secularization theory, it is acknowledged that there is no single, unifying narrative about secularization. Instead, secularization unfolds differently across historical and social contexts; it is not linear, universal, or inevitable—nor is it assumed to be good.  

It is striking to me that, as some have observed, the displacement of religion as the central organizing force in social life is reflected in city planning. In old Europe, the church steeple was the highest point in the city, but today church steeples no longer dominate our skyline. Indeed, when I moved to Houston, Texas, for graduate school over twenty years ago, I found myself looking at the skyline of the Texas Medical Center—the largest medical complex on the planet— while walking the campus of Rice University. It occurred to me then that our steeples today are no longer concerned with saving our souls but rather with saving our bodies. It is as though oncologists, cardiologists, and neurosurgeons are the high priests of our day, for we look to them for salvation.

Looking at the skyline of the Texas Medical Center gave me the idea for The Secularization of Medicine, where I explore aspects of medicine that appear religious but are not recognized as such. For example, clergy wear black robes, while doctors wear white coats. Priests give the sacraments, while physicians write prescriptions. And people make long pilgrimages to medical centers—places like the Mayo Clinic—in search of salvation. There is a lot about medicine that is subtly religious.

Of course, I am not the first person to notice these connections. An important article in this area is Roy Branson’s “The Secularization of American Medicine,” as it summarizes a significant portion of relevant sociological literature. Also, instead of thinking about religion in terms of decline, a key idea for me is Larry Shiner’s concept of transposition. For Shiner, a transposition occurs when religious material migrates to a non-religious sphere or a secular space, where what was once religious is absorbed by the surrounding culture. A classic example is Max Weber’s thesis that the Protestant Work Ethic became transposed in Western capitalism. A contemporary example of a transposition is when a college with a religious affiliation ceases to be affiliated with a specific religious tradition but nevertheless continues to carry out the mission of education.  

Following this line of thinking, it strikes me that the advances in medicine over the last century have been so profound that our hopes about what we want medicine to be for us have grown in idolatrous proportions. Or, to put it another way, the worship of medicine can be understood as a transposition of idolatry, in which common religious impulses of sanctification have migrated into the medical sphere and have been expressed in a variety of ways, including secular pilgrimages, veneration, and memorialization. For me, it is not hard to see that modern medicine is our great Golden Calf (Exodus 32).

The problem with worshiping medicine is that, when we expect so much from medicine, we don’t know how to live with each other in our suffering when medicine fails to improve our quality of life. This was underscored for me last summer by Elaina Plott Calabro in her viral article, “Canada is Killing Itself,” in which she writes about the rapid expansion of medical-aid-in-dying within Canadian healthcare, where 1 out of every 20 deaths (5%) is by medical-aid-in-dying. She rightly raises concerns about whether Canada has moved faster to expand access than to secure social supports (such as palliative care, disability services, and mental health resources), thoughtfully exploring how Canadians are reconsidering what autonomy, dignity, and the role of medicine should mean at the end of life.

Religion, of course, plays an overt role (in terms of beliefs and doctrines) in debates about medical-aid-in-dying, but I think the transposition of religious material likely plays a covert role (in terms of feelings and desires) too, which may be unrecognized. Perhaps a pastoral implication of these dynamics is that chaplains—of all faith backgrounds—would do well to help patients and families abandon the idols they didn’t know they built. My own fear is that patients and families sacrifice too much at the altars of “fighting,” “not giving up,” and “cure.” To live without idols is to let go of our desire for “more” (often expressed in terms of seeking stability and time) and instead hold onto each other.   

Nathan Carlin, PhD, is Director of the McGovern Center for Humanities and Ethics at McGovern Medical School in Houston, Texas.

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Climate change is shaping up to be a global catastrophe. I don’t think this is controversial. There will be food and water shortages, millions of people will be displaced due to rising sea levels, and this will unequally affect the poor and marginalized. As the degradation of the planet leads to worse health outcomes (to put it lightly), bioethicists have noted this relationship, calling for more sustainable practices in healthcare and health research (e.g., Samuel and Richie 2023, Ray and Cooper 2025, Salloch 2026).

Yet despite the knowledge of how catastrophic climate change could be, many of the responses to the aforementioned papers contain a common theme. That is, “Yes climate change is a problem, and we should protect the environment, but…” And in many of these responses, what follows the “but” is a sort of fear of the impractical. I’ll argue that this fear highlights a flawed conception of responsibility both in bioethics and more broadly.

Out of the papers previously mentioned, the responses to Sabine Salloch’s article, “Planetary Health Research Ethics: Sounding out the Dimensions,” most reflect this fear of impracticality. In this article Salloch calls for a reassessment of research ethics in an effort to protect the planet. She offers several concrete suggestions for how this could be accomplished, such as having research ethics committees evaluate study protocols based on their impact on the environment, or by watching for potentially wasteful/repetitive studies.

Following the “Yes, but…” formula, David Resnik argues that Salloch’s proposal could serve to overburden IRBs and research ethics committees, which typically don’t possess the required expertise. In another response, Rieder, Earl, and Hickey argue that stakeholders do not have the resources to assess ecological concerns, and imposing such requirements would waste time and could even cost people their health or lives. Both papers echo the idea that the potential harms to the environment created by health research—which although relatively minor compared to other industries, are not insignificant—are far outweighed by the value created by such research.

Similar arguments have been central to environmental ethics for a long time. For instance, Walter Sinnott-Armstrong’s influential article, “It’s Not My Fault: Global Warming and Individual Moral Obligations,” argues that taking one’s gas guzzling truck for a joy ride isn’t morally impermissible—yes it isn’t necessarily a good thing for the environment, but in the grand scheme of things the emissions are so minimal that they can’t be traced to any harms.

Outside of academia, the argument that 100 corporations contribute to 70% of global emissions is often brought up as a way to minimize individual responsibility. It’s hard to be convinced that using a paper straw will help the environment, as some billionaire takes a flight on his private jet to his third superyacht so he can work on plans to put another AI data center right in the middle of a marginalized community.

I’m sympathetic to both arguments, especially the latter. If we really want to protect the planet, the best way is most likely to stop the capitalist death machine from plundering our planet for all that it’s worth with no regard for human or non-human life. Earl, Rieder, and Hickey even point out in their article that there are better areas to target before healthcare. But this misses the point. Regardless of the social value, no one wants their specific industry to be subject to restrictions for the sake of the environment. Restrictions are impractical and this stands against the values of capitalism.

 The tone of both Resnik and Earl, Rieder, and Hickey’s arguments reflects this fear of impracticality. It would be impractical to give more duties to research ethics committees. It would be impractical to add someone to these committees with environmental expertise. It would be impractical to allocate resources towards ecological concerns in health research. However, these are poor arguments—even from a lens of practicality. I’m confident that letting our planet succumb to the effects of climate change will be much more consumptive of time and resources, especially in healthcare. And I’m positive that such effects will cost more people their health or lives than stopping or modifying a wasteful or repetitive study.

Moreover, now is not the time to worry about practicality. The health and well-being of billions of people are at risk if we continue to let the health of our planet be ravaged. Regardless of who is to blame for the catastrophe we find ourselves facing, the mantra of “it’s not my fault” shouldn’t be reflective of how we respond. Bioethicists should be setting the tone for cultural shifts away from a hyper-fixation on efficiency, practicality, and maximizing shareholder profits, especially when they’re contributing to significant harms. Rather, we should be willing to take the extra step, make the sacrifice, and be altogether impractical in the pursuit of a better and healthier world for all.

I’ll end with one more point about impracticality. It seems to me that a large part of bioethics’ history is founded on an effort to go against the practical method in favor of a more critical, ethical, and potentially impractical one. It was much more practical to not cure the men in the Tuskegee Syphilis Study. Why lose all those perfectly good subjects? It was very practical to use the Willowbrook Institute to study the transfer of Hepatitis. Where else would one find a perfect testing ground for the spread of disease like that?

These studies were efficient, no doubt. They likely avoided the “administrative delays” and “bureaucratic wrangling” that Earl, Rieder, and Hickey fear might slow down the progress of valuable studies if we ask researchers and research ethics committees to consider the environmental impacts of health research.

Luckily, there were bold whistleblowers for both Tuskegee and Willowbrook who decided the lives of these subjects were more important than the results of the study. I can only hope we make the same decision about the health of our planet before it’s too late.

Seamus Donahue, MA, is the Program Manager for the Indiana University Center for Bioethics

The post Climate Change: Examining a Fear of the Impractical appeared first on Bioethics Today.

Black Americans experience nonfatal firearm assault at a rate more than 20 times that of White Americans. For Black men, this epidemic runs even deeper. It reflects a pattern that has held for decades: firearm assault rates are highest among Black Americans, while rates of firearm suicide are highest among White Americans. Black Americans bear the heaviest burden of gun assaults and are the primary population that hospital-based violence intervention programs (HVIPs) are designed to serve. The question is whether HVIPs are built to meet the compounding harm survivors carry or whether the frameworks guiding them fall short of the justice they claim to pursue.

Designed to break the cycle of violent injury, HVIPs are multidisciplinary programs that bring together medical staff and trusted, community-based partners to provide safety planning and wraparound services to individuals who survive violent injuries. Central to HVIPs are Violence Prevention Professionals (VPPs), individuals with lived experience who work directly with survivors at the bedside during what is called the “golden hour”, the critical window where a survivor may be most receptive to support and imagining a different future. Today, more than 100 HVIPs are operating across the United States.

Typically run by trauma surgeons and housed within trauma centers, HVIPs bring valuable clinical grounding but also a particular set of assumptions about what healing should look like and whose expertise counts. When physician-led HVIPs crowd out community knowledge, they risk treating symptoms while leaving root causes poorly understood or untouched. Research conducted with CVI frontline workers confirms what many already know: community violence is driven by structural inequities such as unemployment, failed education systems, criminal legal system involvement, and over policing or de-policing. HVIPs created without centering community voice reproduce the problem they claim to address.

Public health developed “social determinants of health” to move medicine toward structural explanations of illness, but as Braveman and colleagues have shown, the concept is more often named than acted on. HVIPs risk the same pattern: using structural language (equity, lived experience, community-based) without structural change, naming inequity without reorganizing who defines care or who benefits from it. They remain embedded in bioethical traditions built around individualized, transactional care never designed to ask who holds power or who bears its costs. In this framework, the survivor becomes a case to be managed rather than a person whose injury tells a more complex story of decades of intentional disinvestment and displacement. Wraparound services can connect a survivor to housing resources without addressing the policies that produced housing instability. Crisis intervention can interrupt a cycle of retaliation without addressing the conditions that made retaliation feel like the only viable response. This is not a failure of individual programs or practitioners, many of whom carry their own lived experience of these systems. It is a structural problem that requires a structural answer.

In healthcare, the dominant definition of justice traces back to John Rawls’s 1971 A Theory of Justice, which established fairness and equal basic rights as the foundation for a just society, with scarce resources flowing to those with the greatest need. Applied to HVIPs, this framing is not wrong, but it is radically insufficient. As Charles Mills argued, Rawls’s framework assumes historical social conditions were relatively fair to begin with, an assumption that collapses when confronted with the actual history of disinvestment, criminalization, and structural exclusion shaping HVIP participants’ lives. If the starting point was never fair, principles designed to ensure fair distribution cannot produce justice, only redistribution within a system already organized around racial hierarchy. An HVIP built on Rawlsian principles will ask whether survivors receive equitable access to services, not why they are disproportionately Black, why they live in disinvested neighborhoods, or who created those conditions. Procedural fairness cannot repair historical harm. It can only manage its consequences.

We write this critique from different vantage points. One of us is embedded inside an HVIP as a researcher and program leader, and the other is examining these programs from the outside as a scholar. That combination of proximity and distance shapes what we see and what we are able to say. We offer this not to dismiss the work but to sharpen it.

What HVIPs need is a framework of structural justice: one that names the cumulative harm of intentionally unjust systems and refuses to reproduce those hierarchies internally. HVIPs cannot dismantle structural violence on their own, but they can choose to be part of the ecosystem working toward that end rather than operating as if individual intervention is enough. This means VPPs are compensated and included in leadership rather than subordinated to clinical authority, and program success is measured by survivor-defined outcomes rather than institutional metrics. When VPPs hold genuine authority over how care is defined and delivered, programs become more responsive to the actual conditions survivors face. When success is measured by survivor-defined outcomes rather than institutional metrics, programs are held accountable to the people they serve rather than the systems that fund them. That shift from managing individuals to transforming conditions is what structural justice makes possible. How VPPs are paid and positioned reflects what Miranda Fricker called epistemic injustice, the systematic discounting of community knowledge in favor of clinical authority. When VPPs are treated as program staff rather than expert knowledge-holders, the program reproduces the very hierarchy it claims to challenge.

Some programs are already leading the way. Yale New Haven Hospital’s HVIP now offers unconditional direct cash transfers to survivors. This practice implicitly acknowledges what a structural justice framework makes explicit: that it is not enough to ration scarce medical resources when the needs of survivors arise from social inequality itself. Doing justice to survivors means acknowledging the systems that made them vulnerable in the first place and building programs accountable to that history, not just to clinical outcomes.

But justice cannot stop at the bedside. Most survivors do not recover in isolation; they return to households that absorb much of the weight of recovery. Primary caregivers manage medications, navigate insurance, provide emotional support, and absorb economic hardship, frequently without support, recognition, or any voice in how programs define success. Research has documented the significant challenges caregivers face, yet HVIPs have largely continued to treat the survivor as an individual rather than a person embedded in an ecosystem. A structural justice framework demands that we ask not only what survivors need, but what those who care for them need. Their unmet needs and definitions of success are not secondary data.

HVIPs were built to break cycles of violence. But cycles are not broken by managing their endpoints. They are broken by naming what produces them, refusing to reproduce those conditions internally, and building programs honest enough to measure themselves against the full weight of what their patients have survived. That is what structural justice demands. And it is the least that survivors and their loved ones are owed by the society that has harmed them.

William Wical, PhD, MA is a postdoctoral fellow at the Johns Hopkins Bloomberg School of Public Health in the Center for Gun Violence Solutions

Nazsa S. Baker, PhD, MA is the Research Director and Program Manager at the University of California, San Francisco, The Wraparound Project

The post Beyond Good Intentions: Structural Justice and the Future of Hospital-based Violence Intervention Programs appeared first on Bioethics Today.

The Exploitation of Down Syndrome Anxiety

For women over 35, fearing a child with Down syndrome is a significant psychological burden. The IVF industry leverages this fear in marketing, positioning PGT-A as an essential safeguard. Advertisements often use fear-based messaging, suggesting that without PGT-A, older women face high risks of miscarriages or having children with severe genetic disorders. Genetic testing companies even used unauthorized images of children with Down syndrome to promote services, framing the condition as a tragic outcome.

Sociodemographic shifts, like delayed childbearing and declining fertility rates in East Asian societies, exacerbate this anxiety. In Confucian cultures, strong emphasis on family lineage, filial piety, and academic excellence places immense pressure on prospective parents to produce “perfect” offspring. The global trend of increasing maternal age elevates aneuploidy risks, intensifying the desire for genetic screening. This societal pressure creates fertile ground for the IVF industry to market PGT-A as a necessary step to mitigate anxieties and fulfill cultural expectations.

This marketing stigmatizes disability and creates a coercive environment where patients feel morally obligated to opt for PGT-A. By framing PGT-A as a tool for “having your best baby,” clinics exploit parental vulnerability, transforming an experimental procedure into a perceived standard of care.

The Contested Efficacy of PGT-A

PGT-A marketing claims it improves IVF success rates by ensuring only chromosomally normal (euploid) embryos are transferred. However, data from several large-scale randomized controlled trials (RCTs) contradict these claims.

The STAR trial, a prominent multicenter study on PGT-A, failed to demonstrate a significant improvement in ongoing pregnancy rates across all age groups. Similarly, a recent pilot RCT comparing PGT-A to traditional morphological selection in women aged 35–42 found no significant differences in clinical pregnancy rates or live birth rates. Furthermore, a comprehensive multicenter study involving over 1,200 patients concluded that IVF with PGT-A did not yield better cumulative live birth outcomes than IVF without PGT-A.

Critics argue PGT-A functions merely as a “purification procedure” discarding embryos deemed abnormal, rather than improving the cohort’s inherent quality. In doing so, PGT-A introduces the risk of damaging the embryo during biopsy and relies on the assumption that a trophectoderm biopsy accurately reflects the chromosomal makeup of the inner cell mass, which develops into the fetus.

Non-Invasive Prenatal Testing (NIPT) as an Alternative

While PGT-A is performed on embryos before implantation, Non-Invasive Prenatal Testing (NIPT) is another genetic screening option for pregnant women. NIPT is a blood test, typically offered in the first trimester, analyzing cell-free fetal DNA in the mother’s bloodstream to screen for common chromosomal conditions. It is a non-invasive, more affordable alternative to PGT-A, carrying no risk to the pregnancy itself, unlike invasive diagnostic tests such as amniocentesis.

However, NIPT is a screening test, not a diagnostic one. While boasting high detection rates for common aneuploidies, it is prone to false positives, especially for rarer conditions. A false positive result can lead to significant anxiety for expectant parents, often prompting unnecessary follow-up invasive diagnostic procedures that carry risks. The positive predictive value (PPV) of NIPT for less common chromosomal abnormalities can be quite low, meaning a positive result is more likely incorrect than correct in certain scenarios. This limitation underscores the importance of comprehensive genetic counseling to ensure patients understand that NIPT results require confirmation through diagnostic testing. The existence of NIPT, a cheaper and less invasive option, highlights the questionable necessity and aggressive marketing of the expensive and invasive PGT-A.

Misdiagnosis and the Legal Fallout

PGT-A technology’s inherent limitations have led to alarming rates of misdiagnosis, resulting in the discarding of potentially healthy embryos. Studies suggest that PGT-A may be inaccurate in up to 40% of cases, largely due to mosaicism—where an embryo contains a mixture of normal and abnormal cells. Because a PGT-A biopsy only samples a few cells from the trophectoderm, it cannot reliably determine whether the entire embryo is aneuploid or merely mosaic.

This high error rate has sparked significant legal backlash. Multiple class-action lawsuits have been filed against prominent genetic testing companies, including Igenomix and CooperGenomics. Plaintiffs allege consumer fraud, breach of warranty, and deceptive marketing, claiming these companies falsely advertised PGT-A as a proven, accurate, and reliable method for increasing IVF success. In Australia, Monash IVF had to compensate 700 former IVF patients a total of A $56 million for faulty genetic testing. The lawsuits highlight the devastating emotional and financial toll on patients advised to discard embryos that may have been capable of developing into healthy babies.

The Phenomenon of Mosaic Embryo Self-Correction

The most compelling argument against widespread PGT-A use is the human embryo’s biological plasticity. Recent research has illuminated the phenomenon of “embryonic self-correction,” wherein mosaic embryos possess the remarkable ability to normalize their chromosomal makeup as they develop.

Several mechanisms have been proposed for this self-correction. One primary mechanism is the preferential elimination of aneuploid cells through autophagy-mediated apoptosis. As the embryo develops, abnormal cells are systematically marginalized or destroyed, allowing healthy euploid cells to proliferate and form the fetus. Another proposed mechanism involves the extrusion of abnormal chromosomes during cell division, effectively “rescuing” the cell from aneuploidy.

Clinical outcome data strongly support the viability of mosaic embryos. Numerous studies have documented healthy live births following the transfer of embryos previously classified as mosaic by PGT-A. A landmark study analyzing the transfer of 1,000 mosaic embryos demonstrated that while they may have slightly lower implantation rates compared to fully euploid embryos, they still result in a significant number of healthy pregnancies and live births, with no increased risk of congenital abnormalities. This evidence suggests that PGT-A’s rigid binary classification of embryos as “normal” or “abnormal” is biologically flawed and leads to the tragic waste of viable reproductive potential.

The aggressive promotion of PGT-A within the IVF industry represents a troubling intersection of medical capitalism and the exploitation of patient anxiety. By preying on the fears of older women regarding Down syndrome and other chromosomal abnormalities, clinics and genetic testing companies have normalized a costly procedure whose efficacy is not supported by robust clinical data. The failure of large-scale trials to prove PGT-A’s clinical effectiveness, combined with high misdiagnosis rates and the emerging understanding of mosaic embryo self-correction, underscores the urgent need for greater transparency and regulatory oversight. Patients deserve evidence-based counseling that accurately reflects the limitations of PGT-A, ensuring that the pursuit of a healthy baby does not come at the cost of discarding viable embryos.

Alexis Heng Boon Chin, PhD is an associate professor of biomedical science at Peking University

https://www.a4fertility.com/blogs/maternal-wellness/eradicate-down-syndrome-for-your-baby-with-pgt-before-delivery/

The post How the IVF Industry Exploits Down Syndrome Anxiety to Hard Sell the Controversial PGT-A Technique appeared first on Bioethics Today.

There is growing research interest in the prevalence of moral injury – a profound psychological harm caused by judgments which deviate from what an individual or society views as “right” – among those who have been exposed to trauma, such as veterans and survivors of abuse. However, what makes a judgment “moral”? Philosophers have long approached this question through frameworks such as virtue ethics, which emphasizes the character and intentions of the agent; deontology, which focuses on the rightness or wrongness of the action itself; and utilitarianism, which emphasizes the consequences of an action. These traditions offer powerful ways to think about ethics, but they do not fully explain the rapid, everyday moral intuitions we use to navigate social life. At the Center for Brain and Behavior Research in the Sanford School of Medicine at the University of South Dakota, in collaboration with the NeuroComputational Ethics Research Group at North Carolina State University, our interdisciplinary team is using non-invasive brain stimulation to examine the neural systems that support moral judgment in order to better support individuals affected by moral injury.

To investigate the “moral brain,” we use transcranial magnetic stimulation (TMS), a non-invasive technique that uses magnetic pulses to influence activity in targeted cortical regions. Depending on how it is delivered, TMS can temporarily increase or decrease neural activity. In our current study, we use inhibitory stimulation to briefly reduce activity in specific brain hubs, creating a temporary and reversible “virtual lesion.” This approach allows us to ask whether moral judgments shift when a particular brain region is less active.

Our research is guided by the Agent-Deed-Consequence (ADC) model, which proposes that moral judgments draw on three separable sources of information: the agent who performs an action, the deed itself, and the consequences that follow. These components map broadly onto longstanding philosophical perspectives, but the ADC model also provides a framework for testing how the brain integrates them in real time. Participants read brief moral scenarios in which information about the agent, deed, and consequence is systematically varied, and they are asked to make judgments about the moral status of each component.

To measure the brain’s response during these judgments, we combine TMS with high-density electroencephalography (EEG) and eye-tracking. EEG records electrical activity from sensors placed on the scalp, allowing us to measure how brain activity changes from moment to moment as participants evaluate each scenario. This approach is inspired by prior work suggesting that the brain may process intentional deeds and downstream consequences differently: actions may elicit relatively rapid evaluative responses, whereas consequences may require more sustained cognitive integration. Our study tests whether temporarily reducing activity in specific brain regions changes how people weigh agents, deeds, and consequences.

We focus on two neural hubs:

• The temporoparietal junction (TPJ). The TPJ is closely associated with theory of mind, or the ability to infer other people’s beliefs, intentions, and mental states. In the ADC framework, this makes the TPJ especially relevant for evaluating the agent—the person who performs an action and the motives or intentions attributed to that person.
• The dorsolateral prefrontal cortex (DLPFC). The DLPFC is involved in executive function, cognitive control, and rule-based reasoning. We associate this region with the deed component because it may support evaluations of whether an action violates rules, obligations, or moral principles. In addition to the TPJ, the DLPFC likely contributes to evaluating outcomes and integrating contextual, social, and cognitive information.

By integrating behavioral ratings, EEG, and eye-tracking, we are beginning to map how these regions contribute to moral judgment. Preliminary data (n=28) suggest that inhibiting the TPJ may alter how participants judge the immorality of agents relative to control stimulation. EEG analyses also show changes in alpha-band event-related spectral perturbation (ERSP) when participants evaluate an agent’s character. Because alpha-band activity is often associated with changes in cortical engagement and inhibitory control, these findings may indicate that stimulation shifts the neural processes participants use when evaluating social and moral information. Such results enable researchers to understand interindividual differences in moral decision-making and account for changes in intuition, especially for those afflicted by moral injury.  

These findings have implications beyond the laboratory. By identifying how specific brain regions impact moral decision-making according to the ADC model, this work can help clarify the neural basis behind disrupted moral and social judgment among various populations in need. In other words, these findings over the long term could inform interventions for people affected by neurological injury or trauma where disruption of prefrontal or parietal networks may contribute to changes in personality, social behavior, or decision-making. Interventions would target these networks in order to help persons avoid self-harm, exhibit more empathy and tolerance towards others, and maintain personal accountability for moral decisions. TMS can, essentially, offer a clinical pathway towards moral repair.

As we refine our understanding of the neural architecture of moral judgment, we move closer to identifying the brain systems that support ethical decision-making and to developing more targeted approaches for people whose social and moral reasoning has been altered by brain injury or disease.

Michael Pflanzer,¹ Jamie Scholl,² Shaun Respess, ¹ Lee Baugh² and Veljko Dubljevic^1*

1. North Carolina State University
2. University of South Dakota

*Corresponding author

The post Mapping the Moral Brain: Probing the Architecture of Ethical Decision-Making with TMS appeared first on Bioethics Today.

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

Planetary ethics, or examining the moral relationship between humans and the physical world, is a growing field of inquiry related to the broader discipline of environmental ethics. Essentially, more people interested in the health of our planet and the negative impact humans have on it are asking questions about how we ought to relate to our planet, and whether and how we ought to alter our activities to protect our global home. In “Planetary Health Research Ethics: Sounding Out the Dimensions,” Sabine Salloch applies this ethical inquiry beyond the increasingly common conversation of how our current health care practices (i.e., disposable health care materials like gloves, gowns, masks, etc.) affect planetary health to research ethics. Salloch asks us to rethink the approaches, principles, and basic tenets of research ethics to protect our planet’s health in planet health research ethics.

Salloch offers three ethical dimensions of planetary health research ethics in their call to rethink research ethics in light of humans’ irreversible harm to the planet. The first two dimensions focus on mitigating harms. The third dimension draws on the issue of environmental injustice, or the idea that some people, namely those who contribute the least amount to unhealthy environments, are disproportionately affected by an unhealthy planet.

Despite this third ethical dimension, I argue that planetary health research ethics could be strengthened as an independent form of ethical inquiry and made more plausible as a new worthwhile bioethics endeavor if the principles used to establish its foundation explicitly acknowledge that our social lives and the social dynamics of our communities are an integral third party when considering the relationship between research and our planet’s health. Threading the reality of environmental injustice in our communities and concern for vulnerable populations throughout its foundation, for example, will make it more likely that its third dimension concerning environmental impact on human health will be taken seriously and not seen as an afterthought like many other new forms of bioethical inquiry.

Preliminary to the discussion of the proposed three dimensions of planetary health research ethics Salloch reviews what makes research valuable, namely the criteria that it has “social value.” Applying this criterion to planetary health research ethics, Salloch states that “planetary health research ethics needs to consider the health of the global population as embedded in complex natural environments and ecosystems that are profoundly altered by human activities and need to be protected”. One way to strengthen this argument, and give planetary health research ethics more grounding in the realities of our global world, is to explicitly acknowledge that the health of our global population is also dependent upon social environments, dynamics, and hierarchies that are created and maintained by human activities and behaviors. Social hierarchies, such as those created by power dynamics, politics, economics, structural discrimination and other social systems mediate individuals’ life chances and exposures to environmental harms, including how they recover from environmental harms. Our social lives and social dynamics also influence who benefits from research, who is involved in research, and who is harmed by research. As such, our social lives and the social systems that influence our lives are ethically relevant variables that must be central to the foundation of planetary health research ethics if environmental impact on human health is a mode of ethical inquiry that will be considered at some other point in the discussion of planetary health research ethics. If the ways that our social world influences research and environmental health is not weaved into the fabric of planetary health research ethics, it leaves itself susceptible to criticisms that both environmental ethics and research ethics, and bioethics as a whole, have been accused of, which is that it can be a form of elitism and prioritize individuals who are the most well off at the expense of the least well off. We are also seeing more of the realities of our social lives incorporated into our bioethical inquiries, especially those related to the ways that capitalist societies can harm natural environments and people’s health. Incorporating social dynamics and structural determinants of human health into the foundation of planetary health research ethics ensures that bioethical principles such as justice and respect for persons are meaningfully applied across diverse populations at every step of planetary health research ethics.

Building the additional ethical dimensions that explore the intersection between environmental protection and research ethics in dimension 1: practice of health research as a threat to the environment, Salloch explores the possibility of “conflicts between the goals of research and the protection of the environment”. But there is a third party in this conflict that is central to understanding the value of mitigating harm and who we are protecting the environment for and that is humans, particularly those who tend to suffer the most from unhealthy environments. Acknowledging that conflicts between research goals and protecting the environment can also conflict with protecting vulnerable humans would strengthen this ethical dimension of planetary health research ethics and make it align with common bioethical values.

For example, if researchers were to attempt to develop a new antibiotic to address a drug-resistant infection, the bulk of pharmaceutical waste would likely be created during the pre-clinical phase when researchers are creating different compounds and manufacturing processes. During this phase of research, it is possible that compounds and other wastes could be released into waterways affecting ground water in nearby communities, especially in places with less strict environmental regulations. Releasing waste into waterways can contribute to ecosystem disruption. According to planetary health research ethics, this research would be problematic because it is research that pollutes the environment and harms the planet’s overall health. I argue, that if we made environmental justice foundational to planetary health research ethics, then this research would also be problematic if we account for where pollution from research happens and who suffers the most. Since research that pollutes the environment often happens in communities populated with people made vulnerable by their low incomes, ethnicity, race, age, or geographical location, vulnerable populations could be unduly exposed to the waste from this research. These communities that rely on this now polluted water source for life’s daily activities could also have limited regulatory protections, little legal recourse for violations of their environmental rights, and face barriers to healthcare if adverse effects occur. Social ecosystems matter to the value of research and its impact on human lives and the environment. Research does not happen in a vacuum, nor does ecosystem disruption; there is always someone on the other side whose life is affected because of the ways our social societies are ordered, often with the most vulnerable people at the bottom.

Dimension three of planetary health research ethics—research considering the environmental impact on human health—states that planetary health research ethics aims to not worsen health inequities such as those created by environmental injustices, but to help facilitate research in a way that makes it responsive to the health care needs of people mostly affected by unhealthy environments. This ethical goal is absolutely necessary for this new take on research ethics and environmental ethics to have a place within bioethics, a discipline that values protecting vulnerable populations. But if the building blocks for this aim are not embedded throughout the foundational principles of planetary health research ethics, valuing equity, beneficence, and protecting people who are already disproportionately affected by unhealthy environments and poor research ethics can seem like an afterthought.

Planetary health research ethics has a chance to do what so many new theories and concepts in bioethics don’t, and that’s make health justice for the least well off and for the most vulnerable people in our local and global communities a priority, and not an idea relegated to the end of a paper or to the margins of its ethical inquiries. To do this, however, planetary health research ethics, at its core, has to concern itself with the realities of our social lives, including local and global power imbalances, the effect politics has on our lives, and inequitable resource distribution and the environmental injustices they create. Planetary health research ethics must also concern itself with past and present biomedical research injustices and their impact on the research community’s trustworthiness, particularly among marginalized populations like disabled people, economically poor, and racial and gender minorities. As planetary health research ethics merges both environmental ethics and research ethics, it also takes on both disciplines’ issues and relationship to the human population. Planetary health research ethics has to find its ethical footing within these longstanding ethical issues to be a valued discipline within bioethics. One way to do this is to rely on principles that can do some of this heavy lifting at every step of the ethical deliberations it proposes, namely principles that force us to consider the ways humans have organized the world and its effects on how we interact with our natural environments and research practices.

Keisha Ray, PhD

The post Centering Our Social World in Planetary Health Research Ethics appeared first on Bioethics Today.

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

Twenty years ago, Dan Gunther and I published our experience using high-dose estrogen to attenuate the growth of a young girl with severe and permanent neurodevelopmental disability that left her non-verbal, non-ambulatory, and completely dependent on others for her care. Gunther was Ashley’s endocrinologist, and I served as the primary ethics consultant on the case.

When Ashley began showing signs of puberty at six years of age, her parents asked her physicians to consider three interventions: growth attenuation with high-dose estrogen (GAT), hysterectomy, and breast bud removal. Keeping her smaller, they believed, would allow for longer, more personalized care in their home. Hysterectomy and breast bud removal were intended to reduce the potential burdens of puberty on their daughter. Their request reflected a thoughtful analysis of their daughter’s interests given her unique characteristics, her condition, her projected future, and available alternatives.

In the two decades that followed, the Ashley case became one of the most widely discussed—and contested—cases in pediatric bioethics, generating media and academic attention, criticism from some disability rights advocates and others, and legal and policy scrutiny. Revisiting the case offers an opportunity to reflect on what has changed, what has not, and what enduring lessons it offers for clinical ethics.

Lessons from the Initial Ethics Consultation

Expand the Working Group

While individual ethics consultation proves sufficient in most cases, novel or contested situations benefit from broader perspectives. The Ashley case presented three controversial requests, including two (GAT and breast bud removal) for which there was no published literature exploring the ethical issues. The ethics committee members who considered the request of Ashley’s parents included individuals from a range of disciplines and backgrounds, including a member who relied on a wheelchair and home-based lifts. The involvement of a broader group expanded expertise and made it more likely that assumptions and biases would be identified and challenged.

Examine Intuitions Carefully

Committee members initially had strong feelings about the requests being considered. These feelings required critical examination. Listening with openness and curiosity, seeking to understand alternative views, exploring the values and ethical principles at stake, deliberating thoughtfully, and critically evaluating arguments were all essential elements in trying to determine what would best serve Ashley.

Doing Nothing is Also a Decision

Much of the public criticism focused on the perceived harms of intervention. Yet nonintervention also carries physical, emotional, and relational consequences. Ethical analysis requires comparing the risks and benefits of both action and inaction, recognizing that both carry moral weight.

Frame and Organize the Ethical Questions Clearly

Any case involving multiple controversial and inter-related requests invites undisciplined discussion that roams from one issue to another. Our ethics committee discussion was enhanced by disaggregating the interventions—GAT, hysterectomy, and breast bud removal—and discussing the merits of each independently with the understanding that supporting one of the requests did not require supporting the others.

Respect Parental Authority within Limits

When reasonable people disagree about a child’s best interests, decision-making typically rests with parents, terrain that has subsequently been described as the zone of parental discretion.

Lessons from the Media Storm

The publication of our initial report generated a significant surge in media interest. The volume of media requests was overwhelming, with 500 calls from 154 media outlets within the first 32 hours. Protecting the family’s privacy and accurately representing their perspective became immediate priorities. The public response illustrated how quickly clinical ethics cases can become sites of broader social debate and raised questions about the role of ethics experts in commenting about specific cases.

Good Ethics Starts with Good Facts

Many people who commented on the case in the first several months did so without an accurate understanding of what had happened or why. In some cases, they ascribed unflattering motives to the family and clinical team that did not correspond to the facts on the ground. Patient privacy concerns and laws (and academic journal word counts!) limit the ability to share many of the specific details on which careful ethics analysis depends. Ethicists commenting on cases in which they were not involved should acknowledge uncertainty, avoid speculation, and distinguish informed analysis from opinion. In most cases, ethicists would be wise to limit their comments to the broader issues at play and avoid commenting on the specific case that may have triggered those discussions.

Avoid Reducing Complexity to Soundbites

Ethics experts speaking to reporters and writing commentaries for the general population have a responsibility to educate and clarify. The popular media loves a pithy soundbite, but soundbites cannot convey the complexity and nuance inherent in ethical issues. Referring to Ashley as “Peter Pan” (the girl who would never grow up) or as having been “frozen in time”, for example, grossly oversimplified a complicated case and misrepresented the intent of GAT, which was not to “infantilize” Ashley, but to improve her quality of life as she aged and matured.

Engage Criticism Thoughtfully and Learn from It

We catalogued over 30 distinct ethical objections to the care we had provided Ashley. Some raised legitimate concerns about the limits of medical intervention and the protection of vulnerable populations; others relied on incomplete facts, unsubstantiated claims, or flawed reasoning. Engaging these objections thoughtfully and transparently was an important part of our review process.

What Has Changed—and What Has Not

In our original report and subsequent publications we proposed several criteria for considering GAT in other children: the presence of profound and permanent cognitive disability, a near-certain prognosis after multiple independent evaluations, the strong likelihood that the patient will remain non-ambulatory, a provider and institution willing to provide and manage high dose estrogen, ethics committee review, and ongoing outcome review, ideally as part of a multi-center research study.

Determining how many children with cognitive disabilities have received GAT in the past twenty years has proved difficult, though available reports suggest at least several hundred. Public controversy and threats of legal action had a chilling effect on physicians and institutions inclined to offer GAT, driving the practice underground. While some institutions, including my own, have chosen not to offer GAT, others have done so quietly. The desire to remain outside of the public’s eye has had several unfortunate consequences. First, families struggle to identify willing providers and may lack the knowledge or resources to identify a willing physician, travel to that location, and carry out the treatment plan. As Brown et al. point out, this raises questions about equity. Second, eligibility and practice variability has been difficult to assess. Finally, the ability to study outcomes rigorously represents a lost opportunity to evaluate the benefits and burdens of GAT.

Finally, we had hoped that public discussion of the Ashley case would focus more attention on the limited social and financial support available to families caring for children with special needs. Instead, much of the early public debate focused on criticism of the clinical decisions made on behalf of Ashley, missing an opportunity to address these broader social and structural issues during the narrow window of media engagement.

Unresolved Ethical Questions

Several core ethical questions remain unresolved: how to balance respect for persons with profound cognitive disabilities and interventions that permanently alter their bodies; what constitutes benefit in cases where traditional markers of autonomy are absent; how to weigh the interests of caregivers, which are often deeply intertwined with those of the patient; what limits, if any, should be placed on parental authority in these cases. These questions resist simple answers and require continuing engagement with empirical evidence, ethical theory, and lived experience.

The Ashley case contributed to a broader conversation about disability, embodiment, and appropriate goals of medical intervention. Those conversations have been important, as has the inclusion individuals with disabilities in these discussions. At the same time, tensions persist between disability rights frameworks, which often reject medical models of disability and any attempts to alter the bodies of individuals like Ashley, and clinical frameworks that offer medical interventions when they appear capable of improving the well-being of individual patients. These tensions have not been resolved.

One additional issue warrants attention. Assessments of cognitive capacity rely heavily on expressive abilities. Individuals who cannot communicate preferences because of verbal and motor challenges may be presumed incapable of participating in decision-making, an assumption that may need to be revisited as new tools emerge to assess cognition independent of expressive abilities.

Tragic Choices and Moral Practice

The Ashley case involved a “tragic choice,” where no option was unambiguously right, and all choices involved some moral cost. In such cases, ethical practice is often not about finding a perfect solution, but about making the best possible decision under imperfect conditions. These situations call for humility to recognize the limits of our knowledge and fallibility of our judgments and courage to act in the face of uncertainty and criticism.

Ashley is now 28 and lives at home with her parents. They report that she is thriving and remain grateful that she is small enough to carry from place to place. While some individuals and groups strongly believe that Ashley was harmed, the people who know her best, her parents, believe that her interests were well-served.

Stanley Hauerwas has observed that living morally does not guarantee good outcomes. It does, however, call us to engage seriously with the responsibilities we bear to one another, especially the most vulnerable. The Ashley case continues to challenge us to think deeply about how best to do that.

Douglas S. Diekema, MD, MPH

The post Ashley Revisited: Reflections and Lessons Twenty Years Later appeared first on Bioethics Today.

From TikTok to Instagram, social media has become one of the most powerful influences on how people understand health and illness. Nearly 90% of American adults turn to social media for healthcare information. Rising healthcare costs, limited time within busy schedules, and the convenience of digital accessibility have all contributed to this shift. Yet social media allows both information and misinformation to spread rapidly, often with little distinction between the two. Unlike traditional healthcare systems, these platforms operate as private entities rather than under direct government oversight. While licensed healthcare professionals are held to professional and ethical standards, individuals without formal medical training can also widely share health advice, often reaching millions of viewers.

Women’s health is especially affected by this shift. Historically, women have been underrepresented in clinical research, contributing to real gaps in knowledge about symptoms, treatments, and long-term outcomes. Because evidence-based medicine relies on rigorous research, patients may feel that certain concerns in women’s health are inadequately addressed within the healthcare system. When individuals feel their symptoms are dismissed or not fully understood, they may turn to social media for validation and solutions. Online content often provides simple explanations and quick fixes, which can feel more satisfying than the uncertainty that sometimes accompanies evidence-based medicine or research that is still evolving.

As a result, many women seek answers outside traditional healthcare settings. One trend that has gained significant traction online is the idea of “balancing hormones,” a concept that is widely promoted but rarely clearly defined.

So what does “hormone balance” mean? In most cases, it is a vague, non-medical term used to explain a wide range of symptoms in women, such as fatigue, weight changes, acne, or mood fluctuations. The endocrine system is highly complex, involving many hormones that interact through tightly regulated feedback loops. Hormone levels naturally fluctuate throughout the day and across the menstrual cycle, meaning there is no single “ideal” hormone level that applies to everyone. While certain medical conditions, such as Polyendocrine Metabolic Ovarian Syndrome (PMOS), do involve hormonal dysregulation, diagnosis requires careful assessment by a qualified healthcare provider rather than a single test or symptom checklist to guide downstream management options.

At the same time, it is important to acknowledge that increased public attention toward women’s hormone health can be beneficial. Greater awareness has helped shed light on endocrine disorders in women, menopause, menstrual health, and conditions that were historically under-discussed. For example, hormonal testing of Luteinizing hormone (LH) and Follicle-Stimulating Hormone (FSH) levels can play an important role in evaluating and diagnosing menopause in some patients without a uterus and guide their symptom management. Increased conversation around hormone health may encourage more individuals to seek medical care and advocate for their symptoms.

However, the popularity of “hormone balancing” also raises important ethical concerns.

When scrolling through social media, people often fail to question who is producing information and what incentives they may have. Content about women’s hormone health is shared by a wide range of individuals, including physicians, wellness influencers, and health coaches. Physicians are obligated to promote evidence-based information and are therefore subject to professional regulations regarding public communication. Health coaches and wellness influencers, however, are not held to the same standards of training, regulation, or oversight. In an analysis of oral contraceptive information on TikTok, videos created by healthcare professionals were found to be more accurate, yet they received less engagement than videos made by non-professionals. At the same time, the global wellness industry is valued at approximately $6.8 trillion, and many creators promote supplements, courses, or programs alongside their advice.

This introduces potential conflicts of interest that are not always clearly disclosed. For example, dietary supplements are not subject to the same level of regulatory scrutiny as prescription medications in the United States and Canada. They are not required to demonstrate effectiveness before being marketed, and safety monitoring is more limited. As a result, consumers may be exposed to products that are ineffective, interact with medications, or cause unintended side effects. At the same time, because prescription medications come with clear warnings and side effect lists, they may be perceived as more dangerous than “natural” alternatives, even when they are well studied and safe when used appropriately.

Hormonal contraception represents a salient example of how health misinformation disseminated through social media can produce tangible clinical and societal consequences. Influencers and online content creators frequently characterize hormonal contraception as inherently harmful, often encouraging individuals to discontinue its use in pursuit of “hormonal balance” or “natural” health. This messaging commonly combines partial truths, such as acknowledging potential side effects, with broader claims unsupported by current scientific evidence. Hormonal contraception is a reliable, safe, effective, and evidence-based option for preventing pregnancy and managing a range of medical conditions, such as endometriosis, primary dysmenorrhea, and premenstrual dysphoric disorder. Discouraging its use without appropriate medical guidance can undermine reproductive autonomy, particularly in settings where access to abortion or other reproductive services is limited.

At the same time, it is important to acknowledge why these messages resonate. Many individuals feel that their concerns are not adequately addressed in clinical encounters, especially in areas such as menstrual health, chronic pain, or fatigue. The popularity of hormone-related content reflects a genuine need for better communication, more inclusive research, and more patient-centered care. Dismissing these concerns outright risks further eroding trust.

So how should we respond? From an ethical perspective, responsibility exists across multiple groups.

Healthcare professionals need to engage more actively in public communication. This includes using clear, accessible language, acknowledging uncertainty, and validating patient experiences while still providing evidence-based guidance. At the same time, there is a need for stronger oversight of health-related content online. Although platforms such as TikTok state in their policies that they do not allow health misinformation, enforcement often relies on users reporting posts after they have already been published. This reactive approach shifts responsibility onto consumers, who may not have the tools to identify inaccurate or harmful information. Platforms and policymakers should instead consider more proactive measures, including clearer standards for disclosing financial interests and distinguishing between regulated medical advice and unverified wellness claims.

The “hormone balancing” trend is not simply a harmless wellness fad. It reflects deeper gaps in healthcare, research, and communication, while also creating opportunities for misinformation and potential harm. Addressing this issue requires not only correcting false claims but also rebuilding trust, improving access to reliable information, and ensuring that patients feel heard within the healthcare system

Eliana Kagal, BMSc is an MD Candidate at the University of Toronto Faculty of Medicine

Elisheva Nemetz, MBE, MD, Harvard Medical School

The post When Social Media Becomes Your Doctor: Ethical Concerns in Women’s Health appeared first on Bioethics Today.

The viewership of traditional athletics has always been dwarfed by MMA, boxing, and football. The Enhanced Games, commencing this week, might change that. The organizers have recruited an impressive cohort of ex-Olympians to participate in the first event to openly permit performance-enhancing drugs.

Despite all the moral panic it has generated, the Enhanced Games introduce nothing genuinely new to sport. It merely makes explicit what has long been implicit: that we tolerate, and even celebrate, extraordinary physical risk when the entertainment is compelling enough.

The objection from sporting bodies has been swift and categorical. World Athletics president Sebastian Coe called the concept “bollocks,” whilst WADA president Witold Bańka dismissed it as “dangerous and irresponsible.” These responses treat the Enhanced Games as an unprecedented threat to sporting integrity. However, this framing obscures a more uncomfortable truth about what we already accept in the name of sporting entertainment.

Consider boxing, a sport we’ve sanctioned for over a century. Research indicates that approximately 20% of professional boxers develop a progressive brain disease called chronic traumatic encephalopathy, and the American Association of Neurological Surgeons estimates that 90% of boxers will sustain a brain injury during their careers. Boxers live approximately five years less than the general population, with some studies showing even more dramatic reductions in life expectancy.

This isn’t news: we’ve known it for decades. Yet we continue to fill arenas to watch boxers trade blows and celebrate knockout victories in full knowledge that each concussive impact accelerates neurological decline. Fighters like Anthony Joshua command seven figure purses of up to $93 million as we queue for tickets to watch him send fighters to an early grave.

The spectacle justifies the risk. That’s the bargain we’ve already made, repeatedly, across multiple sports. MMA fighters break bones; rugby players incur spinal injuries; motor racing claims lives. We don’t shut these sports down because they deliver what athletics increasingly cannot: narrative drama, physical intensity, and the kind of compelling entertainment that keeps spectators engaged year-round, not just during Olympic cycles when a bit of national pride kicks in and gets blood pumping.

The Enhanced Games simply extends this logic to a new domain. If we accept brain trauma for entertainment, why reject the risks associated with pharmaceutical enhancement? The answer can’t be that drugs are somehow different because doping has never been absent from elite sport. Despite decades of anti-doping efforts, positive tests continue to emerge. Detection consistently lags behind innovation.

The real issue is that traditional athletics has failed to evolve into the entertainment paradigm modern spectators demand. Track and field offers athletic purity but struggles to match the drama that boxing and MMA deliver naturally. The market responds to this. The Enhanced Games can offer prize money that dwarfs traditional athletics because it has : sustained public interest. Every month brings headlines as new athletes sign up. Each announcement generates coverage, debate, controversy. This is the attention economy at work.

The Enhanced Games is a symptom of athletics’ entertainment deficit, not its cause. When athletes can earn millions risking brain damage in boxing while track and field offers minimal financial reward, pharmaceutical enhancement with financial security becomes rational. The market speaks clearly about what spectators will pay to watch.

Critics worry about normalising harmful practices, but danger and injury are already part and parcel of most sports – even in swimming, 53% of athletes get injured each year. The ethical outrage directed at chemical enhancement is inconsistent with silence about these established harms. We’ve long since decided that athlete harm is acceptable when the entertainment justifies it. The Enhanced Games merely forces us to confront that decision directly.

The question isn’t whether the Enhanced Games introduce something morally unprecedented but, rather, whether we’re honest about the bargain spectators and athletes have always struck: extraordinary performance in exchange for extraordinary risk. We’ve answered that question affirmatively every time we buy a ticket to watch two people fight.

 Byron Hyde (@bvehyde) is a philosopher of science and public policy at Hokkaido University with honorary appointments at Bangor University and Bristol Medical School. 

The post The Enhanced Games Might Be Dangerous, But That’s What Spectators Want appeared first on Bioethics Today.

In John Scalzi’s sci-fi novel Old Man’s War, soldiers receive the BrainPal, a neural interface that boosts thinking and connects them to computer assistants. Sounds far-fetched? Perhaps not for long.

Military neuroenhancement may be closer than we think. An AI-assisted closed-loop brain-computer interface, or AI-BCI, could be a breakthrough tool to upgrade warfighters. But while the technology may offer real benefits, it also raises major neuroethical concerns: it may weaken users’ autonomy and shift human reasoning toward algorithmic logic.

AI-BCIs: From Therapy to Enhancement

Implantable AI-BCIs are used therapeutically for epilepsy, Parkinson’s disease, and treatment-resistant depression. Yet in healthy users, similar non-invasive systems could enhance attention or reduce fatigue and stress.

Think of an AI-BCI as a smart fitness tracker and pacemaker in one: it monitors and stimulates neural activity, adjusting mental states. The device records brain signals, uses AI to detect, for example, cognitive overload or anxiety, and stimulates the brain to correct its activity. It resembles “a tag-team of spy and sleeper agent.” Once the “spying” unit detects an anomaly, it “wakes up” the stimulation module.

One psychiatrist compared an AI-BCI to an electric bicycle: “When someone’s pedaling but having difficulty, the bike senses it and augments it. We’ve made the equivalent of that for human mental function.” While compelling, the analogy is imperfect – unlike an e-bike, an interface operates without the user’s full awareness of when and how it modulates their brain activity. And unlike caffeine or stimulant drugs, whose effects are usually consciously felt, it works below that level. 

The Military’s Interest in Neurotech

U.S. military researchers have long explored brain technologies, and the Defense Advanced Research Projects Agency has supported projects showing that AI-BCIs may help regulate mental health and enhance memory. Noninvasive solutions are also emerging rapidly, including ultrasound and other forms of brain monitoring and stimulation.

Commercial start-ups are advancing wearable neurodevices, such as headbands and headphones, for wellness, entertainment, and productivity. For example, the Somnee headband tracks and modulates brainwaves to improve sleep quality.

The military is also moving toward monitoring soldiers’ brains – a prerequisite for neuroenhancement. For instance, the U.S. Air Force partnered with Neurable to track cognitive fitness and attention with EEG headphones, while Aptima is developing an AI-enabled helmet system to monitor helicopter pilots’ cognitive states. The next stage will integrate these neural scanners with brain-zapping capabilities.

The benefits seem clear: boosted cognition and improved emotional control could help soldiers handle fatigue, operate efficiently, keep pace with accelerating human-machine interactions, and prevent errors. But neuroenhancement is not morally neutral. Its ethical challenges should therefore be addressed before such solutions become operational.

Autonomy Under the Algorithm 

The first issue is human autonomy, and three approaches are useful here: traditional, experiential, and relational.

In the traditional view of autonomy, individuals are autonomous when they act intentionally, understand what they are doing, and remain free from undue control. AI-BCIs may not directly threaten intentionality, since they cannot implant motives or goals. But they could challenge users’ understanding and meaningful control over their choices and conduct. Because closed-loop interfaces operate below consciousness, soldiers may not fully understand why they decide or act as they do. Consider autocorrect. It fixes typos but sometimes changes the intended meaning before we notice. AI-BCIs could create a cognitive autocorrect mode. Warfighters may not know what the algorithm inferred from their brain data or how it adjusted their mind. Even with informed consent, a gap remains: you can agree to use the device, but can you truly understand its moment-to-moment influence on your psyche? And there is the problem of non-control. AI-BCIs do not just support cognition; they can filter, prioritize, and narrow options. Soldiers may still feel in control, even though the BCI has quietly structured their mental activity.

The experiential framework of autonomy emphasizes the lived sense of agency: the feeling that I am the one who initiates, controls, and owns my actions. But when decisions are co-managed by an adaptive system, users may feel alienated from their behavior. Was that truly my judgment, my decision – or was I pushed by the system? Some patients undergoing deep-brain stimulation have reported feeling “like a machine” or an “electric doll,” detached from themselves, as if their actions were no longer truly their own. BCI-enhanced soldiers could experience similar estrangement.

The relational approach views autonomy as embedded in interactions with others and our social environment. Yet in the age of AI, “others” are not only humans; they are also smart machines. If a soldier’s cognition is partly co-produced by an AI-BCI, agency and responsibility become harder to locate. If the system misreads neural signals and contributes to wrongful action, who is accountable? The soldier? The commander? The manufacturer? The AI? As cognition is shared between biological and digital intelligence, accountability may diffuse.

Ultimately, autonomy may need to be redefined as a hybrid human-machine concept.

Human Reasoning

An even deeper concern is that AI-BCIs may alter the nature of human reasoning. Our thinking cannot be reduced to statistical optimization. We do not reason solely through pattern recognition or prediction. Human judgment is contextual, embodied, emotional, and often abductive: we move from fragments of reality to hypotheses and interpretations. AI operates differently. It is inductive and predictive. It identifies patterns in past data to optimize future outputs. AI models prioritize what is statistically likely, not necessarily what is contextually wise or morally right.

This distinction matters in combat. War involves uncertainty, chance, and friction, so military decision-making depends on more than processing speed and statistical calculations. Soldiers need flexibility, intuition, and the ability to respond to what does not fit prior patterns. AI-BCIs, however, may favor what has already been learned as optimal, pushing cognition toward logical consistency.

Recent research illuminates this risk. Steven Shaw and Gideon Nave build upon the dual-system theory of cognition, in which System 1 represents fast, intuitive thinking, while System 2 involves slow, deliberative reasoning. They introduce System 3 – external artificial cognition. When humans interact with AI, they often experience “cognitive surrender.” Automation bias, our tendency to over-rely on technology, often leads people to adopt AI outputs without critical evaluation. In their study, participants followed incorrect AI advice nearly 80 percent of the time. Thus, System 3 may override both intuition and deliberation. And when integrated with the brain through AI-BCI, it may no longer remain merely external. System 3 could become part of cognition itself, subtly steering human reasoning while feeling like one’s own judgment.

Who Is Really in Command?

AI-enabled interfaces may offer tangible military benefits. But neuroethics requires us to ask a deeper question: What kinds of subjects do they produce?

Without robust testing, clear safeguards, transparency, accountability, and meaningful human oversight, military neuroenhancement may erode the very human element it claims to strengthen. If algorithms begin managing soldiers’ cognitive functions without their full awareness, military AI-neurotech could undermine the very human agency.

Lukasz Kamienski, PhD, (@LukaszKamienski) is a Professor of Security Studies at Jagiellonian University in Krakow, Poland, and a Fulbright Visiting Scholar at the Center for Ethics and the Rule of Law at the University of Pennsylvania.

The post When the Military Brain Merges with an AI-Neural Interface appeared first on Bioethics Today.

Over the last four years, GLP-1 agonists such as Ozempic, touted by many as miracle weight-loss drugs and popularized by celebrity culture, have seen a 700% increase in use among patients without diabetes. Their use for weight loss has more than doubled since early 2024. On November 6, 2025, the Trump administration announced that the cost of these drugs would be dramatically reduced and that they would now be covered by Medicare. On March 21, 2026, The Lancet published a feature article, “Making treatment for obesity more equitable,” extoling the virtues and promise of greater access to GLP-1 drugs. With their popularity, newly expanded access, and increasingly widespread use, we identify two concerns that deserve attention from bioethicists and healthcare providers, neither of which has received much, if any, discussion in the surrounding literature. One concern is medical. The other involves questions about the relationship between a person’s body size and their perceived rationality.

The popularity and widespread use of these weight loss drugs could influence the way doctors come to perceive, judge, assess, make recommendations for, and even treat overweight patients, similar to (though far more ubiquitous than) what happened with bariatric surgery and other weight-loss drugs like fen-phen in the past.

Losing weight and meeting lower BMI cut-offs are already requirements to be eligible for various surgeries and other medical procedures. This requirement (regardless of whether it is medically justified), combined with easier access to GLP-1 drugs, will make it even harder for fat people to get healthcare (especially since it will now be made more widely available due to the price drops and to being covered by Medicare). Since (as we’ve long known) most diets don’t work, GLP-1s could increasingly become a precondition for getting many surgeries and procedures (in addition to those where this is already the case), further normalizing the often harmful requirement that patients lose weight before receiving additional care and further entrenching the idea that health is necessarily and directly correlated with weight.

From the patient’s perspective, these medical consequences are of serious concern. They become even more alarming given the ease of access to GLP-1 drugs and the ways that they are reshaping what is considered to be a “healthy” weight. These rapidly changing norms increase the burdens and obligations placed on patients who are not considered thin. As bioethicist Jada Wiggleton-Little wrote in her blog, “When a clinician recommends Ozempic to a patient who does not have a weight-related morbidity that would make prescribing Ozempic medically justified, what gets conveyed is not only an obligation to take the medication—which can come with a host of gastrointestinal side effects—but it also conveys an obligation to not be fat.”

These related issues – changing norms about ideal/healthy weights; pressure from both the medical world and popular culture to adhere to those norms; normalizing the use of weight-loss drugs for cosmetic (not medical) reasons – and the requirements they place on patients should concern us. For many patients – and contrary to medical and social norms – being fat itself often poses no intrinsic health dangers. Rather, what is often most dangerous and poses more direct and daily health harms for many fat people is not their fat body, but rather the anti-fat bias they face in society, specifically in medical contexts that have devastating psychological and other effects. In a society that stigmatizes fatness, GLP-1s will become a cure that can distract from the actual conditions many patients face, or as a prerequisite to receiving care, preventing needed care until the condition has been satisfied by the patient.

In short, take a GLP-1, or else…

Our second worry has to do with the complicated way that rationality attaches to body size. With the growing popularity of GLP-1 drugs, combined with the medical-social duty to be thin, fat patients who are prescribed such drugs to lose weight and who opt out of taking them will likely be perceived as irrational. This claim must be understood against the backdrop of the harms that fat patients already experience in medical contexts. On average, physicians spend less time and build less rapport with fat patients; fat patients are generally presumed to be unhealthy on account of their weight (even when they are not) and as such, experience microaggressions and macroaggressions from healthcare professionals, resulting in fractured trust. For many healthcare professionals, all negative health issues experienced by fat patients tend to be attributed to their weight (even when they are unrelated). Additionally, many essential medical devices and equipment (like blood pressure cuffs, CT scanners, and even hospital beds and hospital gowns) do not fit them. Overall, fat patients receive worse care than patients who are not considered to be fat. Compounded by these harms – and what we’d like to focus on here – is the less immediately obvious, but no less serious epistemic harm (viz., harm suffered as a knower) that fat patients experience in the wake of the rise of GLP-1 drugs.

Given the background social and medical norms about thinness, combined with the duty to be thin and the new, purportedly “easy” path to thinness offered by GLP-1 drugs, fat people who choose not to take those drugs are likely to be seen both by doctors and by society as irrational, as bad knowers, or as not being knowers at all. That is, their rationality and credibility as fat people will be viewed as deficient or nonexistent. Fat patients who are prescribed GLP-1s to lose weight for whatever reason and who decide not to take them will be regarded as not responding appropriately to reason, and as a result, will be regarded as being prone to making wrong decisions and having the wrong priorities (such as not valuing their health). In short, in a world that stigmatizes fatness and where GLP-1s are (in principle) available to everyone, fatness itself becomes evidence of irrationality. If it’s bad to be fat, and if you can stop being fat by taking this drug, then choosing to not take the drug is proof that you are irrational and thus, prone to making bad decisions.

Why should this concern us? And why is this epistemic harm just as serious as the medical harm described earlier? We respond by offering a few big picture answers, followed by some normative suggestions for healthcare professionals.

First, if you are regarded as irrational, then it is easier to ignore you when, for instance, you describe your symptoms or rate your pain, thereby exacerbating the medical harms described earlier. Second, if you are considered to be irrational on account of your fatness, then it also becomes easier to disregard or disbelieve you when you describe non-medical things. If fatness is an indication that a person is generally irrational and not credible, then why should anyone believe what fat people have to say about anything at all? Finally, and zooming out, if fat people as a group are taken to be irrational (because they are fat in a world where GLP-1s are, in principle, available to them), then individual harms become systematic and thereby oppressive – no longer just a matter of individual mistreatment but of injustice.

Lauren Freeman, PhD is a Professor of Philosophy at the University of Louisville

Barrett Emerick, PhD is a Professor of Philosophy at St. Mary’s College of Maryland

The post Ozempic, Coerced Weight-Loss, and Threats to Rationality appeared first on Bioethics Today.

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

The recent increases in the number of persons detained by ICE in the United States is affecting health care. Many health-care professionals and facilities that serve immigrant communities report a chilling Health Technology Assessment (HTA), and the value assessment frameworks that underlie this process, seek to systematically define the value of new health interventions in terms of benefits and costs. Watts and Newson aim to “critically assess the ethical grounds for including personal utility within HTA and thus to promote standardization of this concept”. Their analysis represents an important step toward long-needed clarification of the concept of personal utility, and their consideration of the ethical dimensions underlying value assessment and HTA decision-making is to be commended.

Their granular analysis also raises larger underlying ethical questions in value assessment and HTA, that is—whose values should define value, and how should these decisions be made? Traditionally, health economists, clinicians and policymakers have determined the methods of value assessment and defined benefit narrowly in terms of morbidity and mortality. More recently, HTA bodies have recognized that this narrow definition of health fails to capture many benefits that patients and families value. However, instituting a fair process for determining how an expanded concept of benefit should be defined and whose perspectives should be prioritized at various stages of value assessment requires consideration of principles of procedural justice, including transparency, inclusivity, and impartiality. In this commentary, I discuss the procedural justice implications of Watts and Newson’s analysis of the personal utility of clinical genomic testing (CGT), with a focus on their arguments for the role of patient perspectives in defining and measuring value.

At the outset, Watts and Newson draw on the principle of respect for persons to justify incorporating personal utility in value assessment and HTA. They argue that this position recognizes “patients as persons whose evaluations of the worth of healthcare technologies are ethically relevant to formal assessments of their value”. The authors also, at least initially, appear to recognize the relevance of patient and family perspectives in assessing the magnitude of value associated with various dimensions of personal utility, stating that “studies of patient-reported personal utility show that many of the most attested and highly endorsed non-clinical outcomes of genomic testing have no or only tangential connection to potential uses of the information supplied by clinical genomic testing”. In short—patients and families with relevant lived experience of the personal utility of CGT describe the intrinsic dimensions of value to be at least as great, if not greater, than those of use-value.

The authors’ position on the role of patient perspectives in value assessment shifts, however, when they reach the question of HTA decisions around reimbursement. Although patients and families reportedly value intrinsic personal utility even more than use-value, because public willingness-to-pay studies suggest the opposite, the authors conclude that public, and not patient, perspectives on value take precedent. The authors point to the “collective” nature of reimbursement decisions in publicly funded healthcare systems in prioritizing willingness-to-pay, arguing that “respect for persons carries relatively little normative weight in HTA decision making”. However, the process by which they arrived at this recommendation is less clear.

Even in the context of reimbursement decisions in publicly funded health systems, reliance on public preferences alone is hardly a foregone conclusion, and scholars have critiqued this perspective from a variety of angles. Critics point to empirical evidence that members of the public value certain outcomes differently than patients with lived experience. Others focus on dismantling a core assumption underlying reliance on public perspectives—that they represent an unbiased set of shared societal values—instead arguing that the preferences of all individuals—public or patient—are driven by beliefs shaped by their own values and experiences. In direct contradiction to Watts and Newson, scholars also have advocated for privileging patient perspectives in this context specifically on the basis of respect for persons, pointing to the importance of lived experience in understanding all dimensions of value. Still others have challenged prioritizing public perspectives on the basis of equity, arguing that reliance on public perspectives risks marginalizing the perspectives of patients with rare diseases and disabilities. While Watts and Newson’s recommendation to prioritize public perspectives over patients in reimbursement decisions may be justifiable, procedural justice requires a transparent process and examination of the range of ethical and epistemic implications underlying core methodological components of value assessment.

There are also procedural justice considerations relevant to other recommendations Watts and Newson put forth. For example, in considering the justificatory limits of including second-order personal utility in value assessment and HTA decision-making, the authors argue that this form of personal utility is “a matter of continued investment in the discovery, collection, and dissemination of wider genomic knowledge”. The question of who derives value from the expansion of CGT—and of the definition of its personal utility—is an important one. As the accompanying commentary by Lantos notes, CGT occupies “an unusual conceptual space” characterized by a “plurality of purposes.” As such, its expansion has the potential to generate benefits to other stakeholders (e.g., profits to industry, large databases to academic researchers), regardless of whether the patients and families receiving these tests directly benefit. If it is truly only parties other than patients and families advocating for these second-order personal utilities, then Newson and Watts argument may stand insomuch as these benefits are not “personal” at all.

The authors default to the authority of “public utility” to determine whether second-order utility is sufficiently valuable. However, an inclusive, deliberative process could not only resolve such concerns but also ensure that all stakeholders understand the reasons underlying any final decisions, even if they do not agree with them. While we as bioethicists certainly have a role to play in examining the ethical underpinnings of value assessment and HTA, procedural justice dictates that these decisions cannot be made by bioethicists alone. Watts and Newson’s ethical analysis is valuable insomuch as it clarifies the ways in which various ethical principles are reflected in the definition and measurement of personal utility. However, I would argue that rather than prescribing what to decide, bioethicists should focus first on identifying ethical principles for guiding how to decide, as well as processes for implementing these principles in practice.

Scholars have put forward various deliberative models for including a range of perspectives in decision-making across the value assessment and HTA process. Watts and Newson’s suggestion to integrate discussions of personal utility into the assessment of ethical, legal, and social issues (ELSI) may be consistent with such deliberative approaches. Identifying strategies for incorporating the perspectives of individuals with lived experience throughout the value assessment and HTA decision-making process is an essential element of procedural justice that goes well beyond just decisions about personal utility and CGT.

To be clear, in advocating for incorporating patient perspectives on the grounds of procedural justice, I am not claiming that CGT has extensive value, that it should be reimbursed across all clinical contexts, or that public perspectives have no role to play. While procedural justice demands a fair, transparent and inclusive process, it may be that, when the magnitude of the value derived from personal utility is examined together with other dimensions of value (including clinical utility and health outcomes), reimbursing CGT is determined unjustifiable in many contexts. However, the legitimacy of these decisions must rest on a fair and transparent process that is inclusive of diverse perspectives.

Disclosure statement

Dr. Halley has no financial conflicts of interest to disclose. From 2022–2024, she served in an uncompensated role as board member of the Undiagnosed Diseases Network Foundation.

Funding

Funding for this work is provided by the National Human Genome Research Institute grant K01HG011341. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Meghan C. Halley, PhD

The post Whose Values Define Value? Procedural Justice and the Personal Utility of Clinical Genomic Testing appeared first on Bioethics Today.