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.

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

In their Target Article “Inpatient Hospitalization of Adolescents Diagnosed with Autism Spectrum Disorder: An Ethical Analysis,” Hrycko and Sinderbrand argue that inpatient psychiatric hospitalization (“IPH”) creates lasting harms to autistic adolescents. They go on to state that autistic adolescents “are admitted to inpatient psychiatric units at an alarmingly high rate, yet the healthcare system lacks the appropriate training and resources to provide proper care.” The need for better training is echoed by many of the authors of the open peer commentaries in this issue. In this editorial, we argue that this goal not only improves beneficence toward these patients but also works toward greater autonomy and justice for this population of patients.

Rolison et al. and Swaminathan et al. call for improved training for clinicians caring for autistic patients. Such training is even more important in the setting of inpatient hospitalization compared to the outpatient setting. Recent studies confirm that medical students believe they have inadequate training to care for neurodivergent patients. This is within a broader context where medical students receive inadequate training to care for disabled patients. This lack of training continues into residency and beyond.

Yet, there are signs of hope. More and more medical schools are including elective disability training with over 50% of medical schools having some disability awareness training. The Hastings Center issued a brief in 2024 that outlines a number of recommendations in promoting anti-ableist medical education. Former Loyola medical students Emily Carnes, MD, Carla Hanna, MD, and Tyler Morad, MD at the Stritch School of Medicine (“SSOM”) created a disability health elective designed to enhance medical students’ comfort and communication with disabled patients and their overall understanding of disability and the various models of disability, from the medical model to the social model to the neurodiversity model. In creating this elective, they have involved the disability community to allow physicians and people with disabilities (PWD) an opportunity to communicate with one another and to elevate the voice of the community being served. This is, in fact, one of the suggestions made by Swaminathan et al. In their commentary, they assert that, “Incorporating the narratives and perspectives through collaboration with neurodivergent advocates would greatly improve understanding amongst providers and patients. This promotion of cultural humility would enable future conversations targeted toward bettering current care models and decreasing unnecessary escalation in emergency settings.”

The course at SSOM seeks to balance the principle of beneficence with the idea of dignity of risk, thus respecting autonomy and promoting social justice. The tension between these principles often tips into the direction of beneficence, especially in the world of adolescent medicine where the question of who gets to speak on behalf of an autistic adolescent may arise. Typically, parents or guardians make decisions for adolescents, using a best-interests standard while also giving weight to an adolescent’s assent or dissent. Exceptions to this, however, do exist, particularly when it comes to accessing mental health services with some states not requiring parental consent. A recent study published in JAMA Pediatrics found, however, that “Treatment use among adolescents … was significantly lower in states mandating caregiver consent”.

Wilkenfeld et al. state that “[a]utistic adolescents, like their neurotypical peers, may demonstrate full capacity for some decisions but not others.” Such a nuanced approach respects autistic adolescents as whole persons while also acknowledging that they may need greater support for certain kinds of decisions. Richman’s idea of having “autism experts by experience” is an excellent way to help support autistic adolescents in the healthcare setting. Like Swaminathan et al., Richman acknowledges the value of adapted care, if not concordant care, especially given that current assessment tools used in IPH are not appropriate or accurate in assessing autistic behavior. This same theme is also expressed by Chipman, who states, “A relational understanding of autonomy and care can enable a care team to reconfigure their outcomes and approach to attend to the needs of patients as co-creators and contributors to their healthcare process.”

Not only do medical students need better training in disability health. As Lucas-Griffin and Raju mention in their commentary, respite workers need better training as well. Respite workers, like many other workers who assist disabled and elderly individuals, are often poorly paid and may not be adequately trained in mental health. Providing better mental health training as well as training about the heterogeneity of autism to respite workers can improve their ability to provide greater support to autistic adolescents, hopefully as a means of preventing the need for IPH. Although autistic adolescents are often under the care of a parent or guardian, in some situations an autistic adolescent may be supported by a respite worker. Having a greater understanding of mental health and autistic adolescents may improve the healthcare experience, whether in the inpatient or outpatient setting.

In addition to improving education of those working with autistic adolescents who might have co-occurring mental health issues, a need for greater understanding of supported decision-making as it pertains to autistic adolescents is equally necessary to respect the dignity of autistic adolescents. Although supported decision-making is traditionally viewed as a tool to help support disabled adults with decision-making, the underlying rationale applies to autistic adolescents—providing them with as much decision-making authority as possible with the support of a parent, guardian, or other trusted adult. This model of decision-making can be applied in both the outpatient and inpatient setting. Schwartzman and Bettis have argued that identifying risks among autistic adolescents in the outpatient setting may prevent psychiatric hospitalizations, which is a goal that Hrycko and Sinderbrand would endorse.

Overall, the call for improved education at all levels, improved respect for autonomy, and improved programming for individuals with autism spectrum disorder is thoughtfully expressed in the target article by Hrycko and Sinderbrand along with the accompanying peer commentaries. Taken together, these proposed changes have the potential to improve outcomes by decreasing unnecessary reliance on inpatient psychiatric hospitalization and, ideally, reframe the judicious use of IPH as an ethical, patient-centered, value-added resource.

Nanette Elster, JD, MPH, Nathan Derhammer, MD, and Kayhan Parsi, JD, PhD, HEC-C

The post Caring for Autistic Adolescents: A Call for Improved Education of Clinicians and Caregivers appeared first on Bioethics Today.

When I was promoted and received tenure, I received a card from another Black woman professor that said, “The ancestors are moving mountains to see you rise.” As I made the news public, other Black professionals made reference to our ancestors, telling me things like “I’ve made the ancestors proud” or “I am my ancestors’ wildest dreams.” All of these sayings referred to my presence in spaces that were once, at best, not welcoming, and at worst, violent towards Black people, people who looked like me. These kind words, offered as congratulations, referred to the work our Black ancestors put in, the lives lost, the bodies imprisoned, beaten, punished, and hanged for daring to demand equality and humane treatment in America. As news of the U.S. Supreme Court essentially eviscerating the Voting Rights Act, a law that helped to ensure that Black (and other) citizens had government representation that looked like them, that reflected the racial make-up of neighborhoods, counties, and states, that protected them against voting discrimination based on race, broke to the public, I couldn’t help but reflect on the ancestors, the ancestors who moved mountains to protect our equal rights and all the things that come with voting protections.

This is not what they fought for.

After 1965’s “Bloody Sunday” in Selma, Alabama, where people marching were violently attacked for wanting civil rights for Black people, the Voting Rights Act was soon signed into law. Now that the Supreme Court has severely weakened the law, we are left to question what comes next for Black people’s voting power and our equality in the eyes of the law. Weakening the Voting Rights Act allows for gerrymandering, unequal government representation, and unequal government protections. It leaves Black people as unequal citizens in America, especially in cities like New Orleans, Louisiana, where Black people are not racial minorities, but make up most of the population. For many of us, we are not surprised. In many ways, we have never been equal in this country, but this new representation of our inequality is still dehumanizing.

Reflecting on how the Voting Rights Act will affect Black people, how it could affect the next election, and seeing so many Black people expressing their pain and sadness on social media has made me reflect on what these kinds of political events mean for Black people’s health. As we experience our citizenship being devalued in real time, it’s understandable that many Black people right now are not at their best. We are frustrated, saddened, and angry. As we know, political determinants of health, such as voting rights, living under stable governments, and protections from governments, can affect our mental and physical health. Racism is also a determinant of health. Racism in the form of race-related stress and trauma, whether experienced firsthand or witnessed, affects cardiovascular health, sleep health, mental health, our susceptibility to disease and illness and our ability to recover from illness. Political decisions affect our health, and when those political decisions seem to be a direct affront to Black people’s humanity and contributions to this country, these political decisions become a literal matter of life and death.

This is not what our ancestors wanted for us. They did not sacrifice their lives to move mountains, only for those in power to undo the work they accomplished with their blood and tears. 

Black Bioethics forces us to view the U.S. Supreme Court’s decision on the Voting Rights Act through the lens of its implications for Black people’s health. This means considering how its ruling affects Black people’s health now, as we grapple with what it signals about our value as U.S. citizens and humans —namely, that our vote matters less, we matter less. That’s a hard pill to swallow. This also means we will have less say in decisions that disproportionately affect our health, like Medicaid and Medicare funding, where businesses like oil and gas facilities can be built, where hospitals and other institutions that have the resources we need for proper health are built, how many parks and sidewalks and bike lanes exist in our neighborhoods and a million more decisions that affect how healthy our environments are, thus how healthy we can expect to be. Black Bioethics also requires us to think about what this means for the next generation of Black people’s health.

This ruling by the U.S. Supreme Court will affect Black people’s health in negative ways. Its effects will be compounded by our already disproportionate access to proper health. There are many unknowns and uncertainties about Black people’s future political power, but this is not one of them. This decision is already affecting our mental and emotional health.

The bright side of things, if there is one, is that we have always had to save ourselves. It is in our DNA to work to protect our futures. We have always known that no one is coming to save us. I wish it were not this way, but it is. This will test us. This will test our resolve, our ability to form community, our willingness to rely on each other for strength, and our willingness to work for what we know we deserve.

One day, we will be the ancestors that future generations of Black people look back on. When they’re dealing with the fallout of this ruling on the Voting Rights Act, I question what “mountains” they will say we moved to see them rise.

The views expressed here do not represent the views of any organizations affiliated with the author.

Keisha Ray, PhD

The post Eviscerating the Voting Rights Act, Black Bioethics, and the Ancestors appeared first on Bioethics Today.

Oregon’s psilocybin services are often described as quite expensive in both media coverage and academic discussions. However, when making this claim, we should ask: expensive compared to what? Whether or not psilocybin services are considered too expensive may, in fact, depend in large part on whether their use is being thought of as healthcare, a luxury experience, a quasi-therapeutic activity, or something else entirely.

In 2020, Oregon was the first state in the U.S. to legalize access to psilocybin, a psychedelic from so-called “magic mushrooms.” Oregon’s policy is non-medical, as the program requires no physician referral to access services. Clients are administered psilocybin at dedicated service centers under a facilitator’s supervision. These facilitators must have completed an approved training program (~168 hours), but are not required to be licensed clinicians.

Because Oregon’s policy is the first of its kind, it has become a key reference point in debates about how other states might design psychedelic policy. A recurring focus in these discussions is price, as a single dosing session typically costs clients between $850 and $3,000 (which usually includes a preparation and follow-up session).

However, labeling psilocybin services as expensive depends on a comparison, and our choice of comparator can shape our conclusion. We should ask what we might be comparing these services to when evaluating expense (David Nutt explored a similar question about the safety of MDMA compared to other risky, non-drug activities such as horseback riding; ecstasy and “equasy”). The comparator we choose matters, as it shapes whether Oregon’s prices are seen as reasonable and can help define what price Oregon should aim to deliver for psilocybin services.

The choice of comparator depends partly on the kind of experience people believe is being sold. Much turns, then, on what people believe they are paying for, and why they are seeking out psilocybin services in the first place.

Despite Oregon’s policy being non-medical purposes, many clients of these centers report using these psychedelic services for medical-type reasons, such as for depression and anxiety. One natural comparison may then be to existing medical treatments for the same conditions.

For example, we could compare psilocybin service centers to pharmacotherapy for depression or anxiety, which can cost around $30 per month for a generic medication like sertraline without insurance, in addition to ~$250 for semi-regular consultations with a psychiatrist (without insurance). On that basis, psilocybin services might appear quite expensive. However, the picture changes if the comparison is to psychotherapy, which can cost roughly  $139 per hour (without insurance). Assuming a total duration of around 15 hours, psilocybin services cost about $200 per hour at the high end of the price range and about $56 per hour at the low end. In that context, psilocybin services may not look so expensive.

At the same time, the medical comparison raises a different concern: psilocybin has not been FDA-approved as a medical treatment, at least at the time of this writing. The price of psilocybin services may be especially concerning if some clients seek them in response to serious mental health conditions. With this in mind, $3,000 may start to look like a lot to pay for a drug with no formal regulatory approval.

However, many clients also report seeking psilocybin for non-medical purposes, such as for creativity enhancement or for a change in perspective. And psilocybin services are explicitly described by the Oregon Health Authority as not being a medical treatment. People may then be comparing psilocybin services to the prices of other recreational activities pursued for personal growth, well-being, or creativity –especially those that involve some degree of risk and feel similarly intense or transformative. Think perhaps of a 3-day course to summit Mt. Rainier ($3475 or ~$1158 per day), or a full day diving trip with a private divemaster ($718 from one company). In these comparisons with other luxury, intense, and often meaningful recreational experiences, the price of psilocybin services may appear on par or a little bit more expensive.

A third possibility is that psilocybin services fall somewhere in between medical and purely recreational activities: they can offer medical benefits, but can also be undertaken for more recreational reasons. Some might then compare psilocybin services to quasi-therapeutic activities like massages, which can similarly be done for wellness-related reasons while offering medical-type benefits (e.g., relief of back pain).

In 2021, the average massage cost about $76 per hour, while massages at hotels and resorts averaged about $123 per hour. Compared with psilocybin services, which range from roughly $56 per hour at the low end to $200 per hour at the high end, the prices appear broadly comparable.

Finally, people may simply be comparing Oregon’s psilocybin services with unsupervised psilocybin use. As one example, psilocybin can be purchased in D.C (where it is decriminalized) for about $40. From this perspective, the question may become whether Oregon’s regulated supply of psilocybin, facilitator supervision, regulatory oversight, and legal access pathway are worth roughly $2,960 for the additional safety they provide. Some may be answering “no”, leading them to describe services as “expensive”.

There may be no single “right” comparison for Oregon’s psilocybin services, and comparisons alone are not enough to determine whether services are appropriately priced. Psilocybin services may also strike people as expensive simply because their price puts them out of reach for many.

Rather, the goal of this comparison exercise is to show that judgments about whether the program is “too expensive” may depend partly on the kind of experience being sold: is the price being charged in Oregon the price of healthcare, the price of a luxury experience, the price of a quasi-therapeutic activity, or something else?

Psilocybin services present an interesting case in that Oregon is trying to price a novel access pathway and container for a psychoactive experience that hasn’t previously legally existed on the market. Making these comparison sets explicit helps ground debates about Oregon’s program in more careful analysis rather than intuition alone.

Katherine Cheung (@Katherine_Chg) is a PhD student in Bioethics and Health Policy at Johns Hopkins University
Caleigh Propes (@CaleighPropes) is a PhD Candidate in Bioethics and Health Policy at Johns Hopkins University
David B. Yaden, PhD (@ExistWell) is an Associate Professor and the Roland Griffiths Professor of Psychedelic Research at Johns Hopkins University School of Medicine in the Department of Psychiatry and Behavioral Sciences at the Center for Psychedelic and Consciousness Research

The post Evaluating the Price of Oregon’s Psilocybin Services: Finding the Right Comparison appeared first on Bioethics Today.

In the context of healthcare, moral distress has traditionally described the emotional and psychological distress healthcare providers experience when they are prevented from acting in the way they feel is most ethical or just. Their moral agency is typically constrained by institutional policies, pressures, or a lack of resources. NPR, for instance, recently reported on Public Health Service officers’ experiences of moral distress as they are being asked to carry out orders they morally object to. However, the encroachment of malicious federal intervention into all areas of public health necessitates that we consider expanding who we consider at risk for experiencing moral distress.

Specifically, I suggest expanding notions of moral distress in healthcare to explain the type of distress experienced by researchers who had their funding terminated and/or are conducting research in an area or with a population that has been de-prioritized by the NIH (e.g., racial health disparities, gender-affirming care, reproductive justice). For researchers with abruptly terminated grants, the cancellation of their funding meant termination of a participant intervention and/or termination of research conducted in collaboration with community members. This situation left them unsure of how to act most ethically when they could no longer continue a research partnership. NIH acknowledged the ethical challenges posed by funding terminations, but they offered minimal guidance on how researchers should proceed. Without a clear pathway for fulfilling their ethical duties to participants, researchers are likely to experience significant moral distress.

For many researchers, research is a form of care, particularly when they are working in partnership with members of marginalized communities. In the case of investigators conducting community-based participatory research, they have often spent years or decades building trusting relationships with community members who have justly mistrusted academic medical institutions. Part of building this trusting relationship typically involves the promise that the researcher is not coming in to engage community members for one project, or only until it becomes inconvenient to do so; part of building trust is the promise of sustained engagement to make meaningful changes.

Institutional pressures to bring in external funding and/or requirements to cover their salary in a soft-money position have left many researchers in an incredibly distressing position of abandoning the research, patients, and communities to which they have heretofore dedicated their careers. Here, I write from personal experience as someone who has spent years developing relationships with transgender and gender-diverse communities, as well as providers of gender-affirming care. A large part of this work has also been building trust with other researchers who are transgender to make sure that I am doing this research in partnership with those with lived experience. In both cases, it has been important for community and research collaborators to understand that I was committed to this work for the long haul; it was not a situation of academic tourism where I could come to learn about their experiences until I moved on to the next project.

I am currently a co-investigator on a community-based participatory research project where we are co-developing informed consent, participant recruitment, and participant retention materials with a community advisory board of transgender and gender-diverse patients. This project is currently funded by a (very) small pilot award with the intention that the research team would pursue external funding to conduct a cohort study utilizing the co-developed consent and recruitment materials. Community members have dedicated many hours of their time and expertise working with researchers, often sharing difficult personal experiences with the healthcare system. We are currently nearing the end of this study, and the community advisory board is excited to continue working together to conduct research that feels meaningful to them and their broader communities. It is morally distressing to know that we have not secured funding for this work, and it is unlikely we will do so in the future due to the federal abandonment of equity research and institutional pressures to pursue other work. 

For me, the most ethical course of action is clear: We continue to conduct the study we had planned or find another means of continuing meaningful research engagement. However, institutional pressures to secure extramural funding have required the research team to focus on other projects and/or pursue more fundable areas of research. It is also unlikely that we would be able to find an external funder for the research with NIH banning research using gender identity markers, and many foundations not wanting to garner the public attention that might come with funding a study related to gender-affirming care. I cannot find a better framework to describe the lack of agency I feel in this situation—it is moral distress.

I know that I am not alone in these feelings. Confined agency and the inability to ethically serve research partners and participants are incredibly morally damaging for investigators with terminated or de-prioritized research agendas. Moral distress provides an apt framework in which to place these complex emotions and from which to advocate for broader institutional support.

Laura Stamm, PhD is an assistant professor of Medicine and Health Humanities and Bioethics at the University of Rochester School of Medicine and Dentistry

The post Can Researchers Experience Moral Distress? appeared first on Bioethics Today.

Psychedelic-assisted therapy will soon be approved for adults. If the history of adult psychiatric drugs is any guide, adolescents will not be far behind — which makes the question of how they should be included in research an urgent one. That question has typically been framed through the lens of autonomy, and specifically through the adolescent’s capacity to consent to participation. We argue that for psychedelics, an equally important dimension of autonomy lies in what happens afterward: in the adolescent’s capacity, or lack of capacity, to shape the environment in which therapeutic change has to take root.

The last time a major class of depression drugs was approved for adults, adolescents received it through off-label prescribing long before the rigorous testing required to determine the risk-benefit profile in that population. SSRIs reached millions of young people this way: not through malpractice, but because the absence of paediatric trials leaves clinicians with adult-licensed drugs and adolescent patients in distress, and a difficult choice between prescribing off-label or not prescribing at all. This means safety and efficacy questions for paediatric populations get answered in clinical practice rather than in the context of research trials. Indeed, a network meta-analysis found that only one of fourteen antidepressants had a favourable risk-benefit balance in young people, and that some were associated with increased suicidality.

Adolescent mental health is in a worse state now than when SSRIs emerged. Clinicians, parents, and suffering young people are looking for better options – and psychedelic-assisted therapy (P-AT), with its promising adult results, will be a tempting one. But the felt urgency to respond to this need must not lead us to repeating the mistakes we made with SSRIs. The sentiment that children and adolescents are not just “little adults” is well-worn, but it bears repeating: we need sensitivity to differences not just in their biology, but in their psychology and social context.

Getting that sensitivity right requires adolescent-specific evidence that, at present, we simply do not have. Khaleel Rajwani and Brian Earp have argued that this needs to change. If P-AT is licensed for adults but no adolescent trials follow, the SSRI pattern will repeat. This means we need P-AT trials in adolescents. But what should they look like?

At least in part, the answer comes from taking adolescent autonomy seriously – but in a way that the existing bioethical conversation has not yet foregrounded. The protection and promotion of patient autonomy is, for many, the foremost among bioethical principles, and a central concern in paediatric research ethics. Adolescent decision-making capacity develops unevenly, perhaps especially in risk evaluation, future orientation, and susceptibility to authority. It makes sense, then, that the familiar challenges around adolescent autonomy in research ethics foreground the decision to participate – whether a young person can meaningfully consent to being enrolled in the first place. As we argue in a newly published paper, there is reason to think that adolescent autonomy is just as ethically salient after the drug has been administered. The reason has to do with how psychedelics seem to work.

Psychedelics appear to create a time-limited window of enhanced plasticity: a period in which entrenched, harmful, or counterproductive patterns become more open to being reshaped. Preclinical research provides robust evidence that psychedelics enhance structural and functional neuroplasticity. Confirming this directly in living human brains is not yet possible. But if psychedelics temporarily make the brain more open to being reshaped, then what it is that does the reshaping probably matters: not just any psychological support or psychotherapy that follows the drug session, but also the person’s relationships, daily circumstances, and the quality of support available to them.

The plasticity-enhancing effects of psychedelics are often lauded as a straightforwardly positive thing, and not without cause: enhanced openness to change is one of the reasons psychedelics are thought to be transdiagnostically effective. But plasticity is not inherently good or bad: inasmuch as psychedelics support the reshaping of patterns of thought or behaviour, it follows that adverse influences during this window could be actively counterproductive to recovery, perhaps even harmful. In one study of people who experienced prolonged difficulties after naturalistic psychedelic use, key risk factors included stressful circumstances, lack of social support, and young age. If we take seriously, as many do, the idea that post-psychedelic psychotherapy is particularly effective because it acts during a period of heightened plasticity, then we must take equally seriously that adverse environments during this same period could undermine or reverse therapeutic gains.

But people don’t need to be passive recipients of their environments. In our research, some of the most successful adult P-AT patients renegotiated or restructured their lives following treatment: pruning draining relationships, investing in nourishing ones, pursuing long-suppressed interests. This active reshaping of one’s social environment during the post-treatment window may be part of how therapeutic gains consolidate. The acute experience generates insight and renewed motivation; adult autonomy allows the patient to turn that into lasting change.

The autonomy of adolescents – or rather, the relative lack of autonomy of adolescents, complicates this process. The developmental trajectory of adolescence is precisely the gradual gaining of influence over one’s own social environment. But relative to a typical adult, teenagers have far less ability to select, avoid, or seek out the social inputs that shape their recovery. Their daily lives are largely determined by the norms of the family home and the routines of schooling.

In short, we should think very carefully before giving adolescents plasticity-enhancing drugs, and then returning them to the very environments in which their distress first emerged.

We argue that taking these considerations seriously has concrete implications for how adolescent P-AT should be designed, at least at first: it invites approaches that attend to the family and relational world the adolescent will return to, not just the individual sitting across from the therapist. “Readiness for treatment” should encompass not only the patient but also the environment they will return to.

Adult psychedelic trials already ask about family history, typically to screen for first-degree relatives with psychosis as an exclusion criterion. This is sensible. But for an adolescent patient, the family is more than a source of inherited risk. It is also a large part of the relational environment the patient will return to during the period of heightened sensitivity discussed above. A family history limited to parental psychiatric diagnoses may suggest biological vulnerability, but on its own tells you little about the emotional climate the adolescent will return to, the capacity of caregivers to absorb and support change, or the relational patterns that may have contributed to their difficulties in the first place. Adolescent P-AT needs a sense of the family the adolescent is going back to, not just the family they are descended from.

Concretely, attending to the post-treatment environment the adolescent returns to might include psychoeducation for caregivers about the post-treatment sensitivity window, assessment of family functioning to identify where additional support is needed, and access to brief, evidence-based family interventions with demonstrated effects on both caregiver self-efficacy and child mental health outcomes. It would also likely involve integration support that extends well beyond the protocol-defined number of sessions developed for adult trials.

And it might, in some cases, look stranger still: it is conceivable that the best application of P-AT to improve at least some adolescents’ mental health could be its judicious use in one or both parents, with integration involving a mix of family and individual therapy. This is not without precedent in spirit, if not in modality: family systems approaches have long recognised that treating the relational context around the patient can be more effective than treating the patient alone, and brief family interventions already have a strong evidence base in adolescent mental health. This is more work and more expense for an already resource-intensive modality. But the alternative is the pattern that produced the SSRI story.

The logic here is not confined to adolescents. Anyone whose environment is both adverse and resistant to individual modification may face a version of the same problem. There are early signals that the population-level benefits of psychedelics are diminished in groups facing structural disadvantage. If the post-treatment environment is part of the mechanism, not merely a backdrop to it, then attending to that environment is not an optional extra but a core design question. Psychedelics might loosen entrenched maladaptive patterns. They cannot, by themselves, alter the circumstances that produced them.

Eddie Jacobs, DPhil (@eddietalksdrugs) is a postdoctoral fellow in psychedelic science at the Center for Psychedelic and Consciousness Research, Johns Hopkins and Associate Director of the Hub at Oxford for Psychedelic Ethics

Bryony Insua-Summerhays, DClinPsych is a Senior Clinical Psychologist in the NHS

The post How Should Adolescents Be Included in Clinical Psychedelic Research? appeared first on Bioethics Today.

In American hospitals, beneath the noise of day-to-day clinical work, a quieter, more insidious shift has taken place—a linguistic one that is eroding the physician’s identity. After two decades of practice across three continents, I have been called many things: healer, doctor, advisor, confidant, and student. Only in the United States have I been routinely referred to as a “provider.” To an administrator, it’s harmless shorthand. To me—and to physicians and patients—it is a term that hollows out the profession, reduces patients to consumers, and flattens the sacred art of medicine into a mere commercial transaction. I refuse to accept it.

My odyssey unfolded in northern Pakistan. There, the title “doctor” carries an almost spiritual weight. Patients address you as Doctor Sahib—a mark of respect for your expertise, yes, but also for your role as a trusted guide with moral and social gravity. Medicine there was deeply personal and communal; it was woven into the community. No one ever “provided” care; we practiced it, and language reflected that truth.

Singapore was different—a landscape of ruthless efficiency and high-tech precision. Yet, even in that hyper-modern system, the language remained sharp. I was still a doctor. The title signified a clear contract of competence and reliability, reinforcing professional identity rather than impeding efficiency. There was no room for bureaucratic euphemism in the clinical encounter. Studies on professional identity formation underscore that such linguistic anchors are central to how clinicians internalize ethical responsibility and meaning in their work.

Then came London and the NHS. While the word “provider” appeared in high-level policy documents to describe massive organizations or NHS Trusts, they have largely kept it out of the exam room. Physicians were doctors—full stop. The distinction was vital: titles reflected the ethical weight of the decisions we made at the bedside. This separation is intentional. System-level abstraction may serve administrators, but bedside medicine depends on moral clarity. Narrative medicine and general internal medicine literature consistently show that patients experience care relationally, not institutionally.

When I moved across the pond to the United States, I expected to find the pinnacle of medical advancement. Instead, I often encountered a culture drowning in corporate euphemism. In emails, EHR prompts, and “patient-facing” brochures, I had become a “provider.” It isn’t just a semantic annoyance; it reflects a broader, darker transformation in American healthcare, where market forces reign supreme. Analyses of medical language demonstrate a broader cultural move away from individuals and toward populations, metrics, and standardization. To call a physician a “provider” implies we are interchangeable—cogs in a supply chain rather than professionals with specific, grueling training. It blurs the vital lines between physicians, nurse practitioners, and physician associates, collapsing distinctions between years of training, scopes of practice, and professional accountability. Needless to say, collaboration is essential, yet respect does not require homogenization. True teams function best when roles are clear, not when they are diluted into a gray administrative soup. Evidence from team-based care repeatedly shows that clarity of roles—not their erasure—improves safety and performance. Ambiguity diffuses responsibility and increases cognitive error.

For millennia, physicians have been entrusted with the most vulnerable moments of the human experience, something impossible to put a price tag on. However, the term “provider” commodifies the doctor-patient relationship. When I sit with a patient receiving a terminal diagnosis, I am not “providing a service.” I am holding a space for their fear and their hope. I still think of an elderly patient with heart failure who once spent an hour telling me about his life’s regrets. That wasn’t a billing code. It was the essence of the job. Narrative accounts across specialties emphasize that meaning in practice often resides in these quiet, unmeasured moments.

Moreover, the dehumanizing effect of this corporate dialect is a potent contributor to the ongoing burnout crisis amongst US physicians. Burnout in American medicine is often attributed to workload and documentation, but growing scholarship highlights moral injury—the distress that arises when systems force clinicians to act against their values. When we are reduced to “providers,” it becomes easier for a system to treat us as data points—imposing quotas and metrics that value volume over judgment, presence, and the human soul. In an age of rampant misinformation, patients deserve to know exactly who is treating them. Titles signal training, accountability, and authority. When patients know whether they are seeing a physician, they can contextualize advice and responsibility—particularly in high-stakes or end-of-life decisions. Transparency promotes trust, and trust is the only foundation upon which healing can happen.

Change is possible. The American Medical Association has already pushed to abandon “provider” in favor of “physician.” It’s time for hospitals and insurers to catch up. But more importantly, it’s up to us. A gentle correction— “Please, call me doctor”—goes a long way in honoring the commitment we’ve made to our patients, our profession, and our own well-being. It reasserts not ego, but responsibility.

I am a doctor. It’s time we reclaimed the title—and the soul of the profession.

Kalimullah Jan, MD, is an Instructor in the department of Neurosurgery (Neuroendovascular) at the Medical College of Wisconsin, Milwaukee.

The post In Every Country I Practiced, I Was a Doctor — Until America appeared first on Bioethics Today.

The term “social media manipulation” was coined to describe how the features of social media algorithms (e.g., hypernudging and microtargeting) and the uncontrolled proliferation of misinformation bots influence users online and offline. Social media companies have been the target of speculation from politicians, journalists, and the public as cultivators of misinformation and radicalization. Senators from both sides of the aisle have called out divisive content about social media’s detrimental impact on young people. These arguments are not new. Websites like 4chan have been publicly discussed as hotbeds for far-right radicalization that encourage dangerous behaviors like doxxing, swatting, and in some cases, mass violence. Taken together, social media manipulation and the ability of (even a few) bad actors to gain significant exposure, we see that the average user’s social and political reality can be easily distorted. Further, these apps can even have the ability to influence what values are embodied and expressed through the development of new social norms.

So we ask, if there’s evidence that social media influences and manipulates user behavior, then is it possible that social media also influences users’ moral sensibilities?

Using a case study, we hypothesize that the tendency for social media algorithms to generate moral outrage is re-integrating and normalizing disavowed value systems, like eugenics. For example, Dej and Antwon are Black disability influencers with Osteogenesis Imperfecta (OI), who collectively have over one million TikTok followers. As influencers, videos of their lives are routinely the target of discussions on lifestyle choices of people with disabilities. A (now deleted video) announcing the birth of their daughter, who was also born with OI, led to severe public outrage (See Figure 1). Responses from other creators and commenters started with concerns for the child and evolved into a debate on whether disabled people should have children. 

On TikTok consensus is driven by “likes,” where the most liked comments rise to the top. For instance, the top comment with 180 thousand likes, called Dej and Antwon’s actions, “[The] Most selfish thing ever😭 I wouldn’t forgive my parents.” This is particularly of concern, because it characterizes Dej and Antwon as bad parents for having a child with a disability. This discourse reflects a pervasive eugenics practice of publicly evaluating disabled people’s reproductive choices and applying moral judgment. While it is unclear what values and beliefs people hold outside of the comment section, the app and comment section alike have created an environment where eugenics and other disavowed value systems (i.e. racism) are tolerated and engaged. 

As such, we posit that one of the largest places everyday people gather to debate morality, ethics, and morally acceptable social norms, is TikTok. As a field, bioethicists should interrogate the possibility of social media changing moral realities. The discussions occurring online have larger implications for society, but determining their impact on moral sensibilities is more challenging to empirically capture compared to shopping trends or voting behavior.

Despite the need for bioethicists to engage with online content, it is unclear how we are supposed to navigate the ethically complex conversations or how to rigorously study its users. Should we engage in social media, as influencers or fact checkers? How should we invest in empirical bioethics research on TikTok and other social media apps? How should bioethicists intervene in what seems to be a mass social and moral backsliding event? We invite bioethicists to think deeply about how to respond.

Social media platforms are shaping and reshaping perspectives on, attitudes towards experts, expectations of public institutions, political beliefs, and possibly moral values, without much engagement from bioethicists. As a complex AI age is on the precipice, public health is dismantled, and our government officials push mis- and disinformation, we must keep our fingers on the pulse of the commentary that is happening on TikTok. If not, bioethicists risk ceding influential public discourse to voices that may undermine ethical reasoning, public trust, and evidence-based decision-making.

Figure 1

Taylor Montgomery, MPH is a doctoral student at Johns Hopkins University Berman Institute of Bioethics

Odia Kane, PhD, MPH, is a post-doctoral fellow at the Johns Hopkins University Berman Institute of Bioethics and Institute of Assured Autonomy

The post TikTok Ethics: Social Media’s Influence on Moral Values appeared first on Bioethics Today.

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Bioethics exists to help us think clearly about difficult medical decisions, especially when those decisions affect individuals who cannot speak for themselves. At its core, bioethics asks a set of enduring questions: Who decides? Who bears the risks? And what obligations do we have to protect the most vulnerable?

These questions arise across medicine, but they take on particular urgency in discussions of routine infant circumcision. The practice is often framed in terms of culture, religion, or potential health benefits. Far less frequently examined is how it aligns with the ethical framework that guides modern medical decision-making.

When we apply the four central principles of bioethics—autonomy, beneficence, non-maleficence, and justice—we are confronted with a critical question: Does routine infant circumcision meet the ethical standards medicine claims to uphold?

This question is not limited to clinicians or ethicists. It is relevant to anyone concerned with children’s rights, bodily autonomy, and the integrity of medical practice.

Autonomy and the Limits of Proxy Consent

Autonomy is a foundational principle of modern healthcare. It is operationalized through informed consent—the expectation that individuals understand and agree to medical interventions affecting their bodies.

Infants, of course, cannot provide consent. Parents are therefore entrusted with making decisions on their behalf. Ethically, however, this authority is not without limits. Proxy decision-making is generally justified when it serves the child’s best medical interests or addresses a clear and present health need.

Routine infant circumcision does not fit neatly within this framework. It involves the removal of healthy, functional tissue from a non-consenting individual, typically without medical necessity. Because the procedure is irreversible, the individual affected is permanently deprived of the opportunity to make this decision for themselves.

From a bioethical standpoint, this raises a central concern: if respect for autonomy is a core value in medicine, how do we justify performing a non-therapeutic, irreversible procedure on someone who cannot consent?

Non-Maleficence and the Question of Harm

The principle of non-maleficence—commonly expressed as “do no harm”—requires clinicians to avoid exposing patients to unnecessary risk. This obligation is particularly strong when the patient is otherwise healthy.

Circumcision is a surgical intervention, and like all surgeries, it carries inherent risks. These include pain, bleeding, infection, and, in rare cases, more serious complications. While many procedures occur without major incident, the ethical question is not simply whether harm is common, but whether the risk of harm is justified at all.

In most areas of medicine, surgical risks are considered acceptable when they are necessary to treat disease or prevent significant future harm. Routine infant circumcision, by contrast, is generally performed on healthy individuals without a medical indication.

This leads to a straightforward ethical inquiry: Is it appropriate to expose a child to surgical risk when there is no immediate medical need?

Beneficence and the Evaluation of Claimed Benefits

Beneficence requires that medical interventions provide a meaningful benefit to the patient—one that justifies any associated risks.

Proponents of routine circumcision often cite potential health benefits, including reduced risks of certain infections. Bioethics, however, demands that such claims be evaluated in context. Many of the conditions referenced—such as urinary tract infections or sexually transmitted infections—can be addressed through less invasive means, including hygiene, education, and medical treatment.

This is reflected in the positions of many healthcare systems globally. Medical organizations in Europe, Canada, and other regions have concluded that the potential benefits of routine infant circumcision are insufficient to justify performing surgery on healthy children.

The ethical question, then, is not whether some benefit may exist, but whether those benefits are substantial enough to warrant an irreversible intervention before the individual can weigh those factors independently.

Justice and Consistency in Ethical Standards

Justice, in bioethics, concerns fairness and the consistent application of ethical principles. Modern medicine places strong emphasis on protecting children from non-therapeutic interventions that may compromise bodily integrity.

In many contexts, societies have established clear protections against irreversible, non-medically necessary procedures performed on minors. These protections are grounded in respect for autonomy and bodily integrity, and in the recognition that children deserve heightened safeguards.

Applying the principle of justice requires us to examine whether similar ethical standards are being applied consistently across different types of medical interventions. When comparable principles are invoked in one context but not another, it raises questions about coherence in ethical reasoning.

Justice, therefore, invites careful reflection on whether current practices align with the broader commitments medicine makes to protect vulnerable populations.

Culture, Tradition, and Ethical Reflection

For many families, circumcision is closely tied to cultural or religious identity. Acknowledging ethical concerns does not require dismissing or devaluing these traditions.

Bioethics plays a critical role in helping societies navigate the intersection of tradition and evolving ethical standards. Throughout history, medical practices have changed as our understanding of human rights, consent, and patient autonomy has developed.

Engaging in ethical reflection allows for a respectful examination of long-standing practices. The aim is not to challenge identity, but to consider whether current medical practices are consistent with the ethical principles that guide contemporary healthcare.

A More Ethically Coherent Approach

Bioethics does not offer simple answers, but it does provide a framework for evaluating complex questions. When the principles of autonomy, non-maleficence, beneficence, and justice are applied to routine infant circumcision, they collectively point toward the need for caution.

One potential approach is to defer the decision until the individual is capable of participating in it. When a person is mature enough to understand the medical, ethical, cultural, and personal implications, they can make an informed choice aligned with their own values.

Such an approach preserves individual freedom while respecting bodily autonomy and minimizing unnecessary risk.

Why This Conversation Matters

At its core, bioethics is concerned with protecting those who are most vulnerable. Infants and children depend on others—parents, clinicians, and society—to safeguard their interests.

When ethical principles are applied consistently, medicine becomes more trustworthy and more humane. When they are applied selectively, they can undermine both credibility and patient protection.

The discussion surrounding routine infant circumcision is ultimately a reflection of how seriously we take the principles we claim to uphold. It asks whether our practices align with our commitments to autonomy, protection from harm, and equal consideration.

These are not abstract concerns. They go to the heart of what ethical medicine requires—and how a society chooses to protect those who cannot yet protect themselves.

Justin Bonyai, BS serves on the Board of Intact Global as Secretary–Treasurer and Director of Operations and Engagement

The post Why Bioethics Matters in the Debate Over Routine Infant Circumcision appeared first on Bioethics Today.

At present, carebots offer a promising solution for monitoring sleep patterns and promoting healthy rest routines, and for non-pharmacological pain management prompts. During periods of elevated stress, anxiety, irritability, or agitation, these carebots can guide patients through calming exercises and grounding techniques. Finally, they could help reduce isolation and emotional distress often experienced by patients living with MCI or dementia by connecting them with friends, family, or available support groups. Our own initial pilot study (publication forthcoming) found that compatibility and quality of social interaction were of the greatest interest to older adults and care partners. Nearly all interviewees perceived carebots to be a valuable companion to manage loneliness in older populations, with one interviewee even describing it as an “emotional support robot.” Still, concerns about patronizing or infantilizing language were widely shared. Situated task plans with a voice interaction loop can generate real-time and emotionally aware conversations that also promote personalized responses with users.

These prospective benefits conflict with notable concerns about deception where carebots could mislead users by falsely displaying human traits, while also separating older persons from human contact. Given that Pepper robots like Sava can have rich expressions, including the use of body language, utilize multimodal communication, analyze voice tones, and recognize human emotions, these fears could be warranted. Their open platform is designed to support a variety of applications and work with numerous large language models (LLM)s, but they can be justified in assistive roles only if the privacy of user data can be secured and is protected against external actors. Unlike the current industry standard, the LLM must be made private-by-design – locally hosted, offline, with multiple levels of encryption and authentication.

Moreover, dynamic world models – adaptive simulations used by an AI system that simulate real-world environments and physics using a combination of textual, visual, and movement data – can enable a system to identify solutions on a case-by-case basis to better predict patient needs, like when a patient becomes unresponsive during an emergency. A robot like Sava can be conditioned to simulate both high- and low-risk scenarios which require a complex response, though constant evaluation by human partners is needed to ensure data privacy and value alignment with notable stakeholders. Given the ongoing issues caused by the black-box problem, where an AI system’s logic cannot be understood due to hidden connections between nodes in the network, it is important to implement transparent ethical guidance functions that specify to the system what constitutes a correct course of action. The Agent-Deed-Consequence (ADC) model for instance can develop a moral judgment of a situation by weighing considerations according to one’s character (agent), the quality of their actions (deed), and the possible consequences in a given situation based on user data in the dynamic world models. Then, the model can generate a solution that is operationalized in a carebot or other AI system using deontic logic – where ethical components like these can be represented as operators in the algorithm to determine what is obligatory, permissible, prohibited, and so forth.

Ethical guidance functions like these would arguably equip carebots like Sava with the parameters to make decisions in a range of cases. For example, while following the orders of human users is essential, so is distinguishing between potential intruders who might wish to enter a home or a concerned neighbor who heard a fall. Gauging user intentions can sometimes mean recognizing sarcasm, assessing the probability of harm from multiple outcomes, and evaluating the action in question – such as whether a person intends to self-harm. More importantly, these functions can guide robots during moments of impasse, such as when commands conflict. For instance, it is vital to know when it is responsible to dispense medication, even if a patient is not requesting it.

Introducing social partners like Sava into elder care is a novel way of managing patient needs and alleviating caregivers of burdens associated with daily care in a rapidly aging society, so long as robots are implemented in an ethical and effective manner. They must not be seen as replacements for proven and reputable care systems of professional medical experts, but they may represent an essential piece of technology to support these systems in the near future. Effective deployment will mean not only avoiding serious cases of harm, but supporting persons in the IADLs that they experience on a daily basis. Ethical guidance means ensuring that the carebot has the tools to differentiate between competing commands, can react quickly and proficiently in both high-risk and low-risk situations, and is maintained offline to protect user data. If employed properly, carebots might constitute the next wave of social innovation in elder care. If not, they may become the cause of a social backlash, and perhaps even a new winter of AI.

Shaun Respess, Daniel Blalock, Edgar Lobaton, Christopher B. Mayhorn, Arnav Jhala, Shawn Standefer, Jonathan Young, and Veljko Dubljevic

The post The Promises and Challenges for Ethical Carebots appeared first on Bioethics Today.

My great-aunt chose medical assistance in dying (MAiD) in Alberta, Canada. It was sad – all death is – but it brought us comfort knowing that her death was autonomous, compassionate and mattered. And now, legislation threatens to take that choice away from others.

On March 18^th, Alberta introduced Bill 18: the Safeguards for Last Resort Termination of Life Act – a bill that claims to “protect” patients but undermines the exact principles MAiD was built upon. Not only does this Bill dictate who may receive MAiD, but it dictates how clinicians may discuss and facilitate access to it. For a province heavily embedded in personal freedom, this Bill sharply undermines an Albertan’s right to autonomy.

An Attack on Ethical Medical Practice

One of the most troubling proponents of Bill 18, is its prohibition of physicians and nurse practitioners from referring patients beyond Alberta’s borders for MAiD eligibility assessments. This is a direct contradiction of medical providers’ moral obligation of duty to refer.

Duty to refer exists for this very situation. While it would be unethical to require medical providers to conduct legal treatments opposing their personal values (conscientious objection), medical providers cannot impede access to it. By banning all refers, Alberta has legislated clinical abandonment – leaving patients without a pathway to the care they are legally entitled to consider.

A Harmful Narrative about Marginalized Patients

Supporters of Bill 18 point to concerns that MAiD is a readily available and encourage treatment for marginalized patients. In a CBC news interview, a family physician stated that healthcare workers offer marginalized patients MAiD, rather than social supports for poverty or social isolation. While this elicits emotion, rightfully so, the national data and evidence prove this statement to be incorrect.

In Canada, Track 2 recipients (those who do not have a foreseeable death within 12 months) tend to have higher income and are less socially marginalized. In fact, 95% of Track 2 recipients with disabilities had supportive services, and no one can legally receive MAiD due to poor housing, poverty or inadequate supports.

In our current political climate, medical distrust is at an all-time high – false information and narratives based on fear, not facts, only deepens public distrust.

12-Month Prognosis Requirement Ignores Medical Reality

Bill 18 would limit MAiD eligibility to patients who are expected to die within 12 months. While this sounds straightforward, anyone who has worked in healthcare can attest to the fact that prognostication is inherently uncertain.

A qualitative study of MAiD assessors found that distinguishing Track 1 cases (reasonably foreseeable death) from Track 2 cases is often complex and highly individualized, relying heavily on clinical judgment rather than rigid timelines. Assessors emphasized that illness trajectories can vary widely, and decisions cannot be reduced to an arbitrary cutoff.

Federal reporting shows that Track 2 MAiD patients account for only 4.1% to 4.4% of cases. Yet, Bill 18 treats this small number of cases as justification to restrict access across the entire province.

Safeguards Already Exist

Alberta proposed Bill 18 with the misconstrued belief that patients need further protection. However, Canada already has one of the most comprehensive MAiD safeguard legislations in the world.

Under federal law:

• A minimum 90‑day assessment period for Track 2 cases
• Two independent practitioners to confirm eligibility
• Condition‑specific expertise by at least one assessor (or consultation with someone who has it)
• Full disclosure of all medical, palliative, disability, and community support options
• Voluntary, written, witnessed requests — with the option to withdraw at any time

These safeguards are explicit, robust and nationally standardized.

What Albertans Need

MAiD was created to offer patients enduring intolerable suffering a compassionate choice. Bill 18 undermines that choice by restricting information, limiting referral pathways and imposing unrealistic timelines.

My great-aunt had the dignity of choice at the end of her life, and Bill 18 threatens to take that away from others.

If Alberta wants to protect vulnerable people, then it should invest in increased medical funding, mental-health services, disability supports and social services – not restrict access to a federally protected medical option that allowed my great-aunt a death rooted in autonomy, compassion and evidence.

Brianne Helfrich, Bioethics PhD

The post My Great Aunt Had a Choice. Bill 18 Threatens That for Others. appeared first on Bioethics Today.

Three cases appear in almost every bioethics course: the Tuskegee Syphilis Study, the death of Jesse Gelsinger, and the story of Henrietta Lacks. All three are taught as cautionary tales about what happens when research goes wrong. But only two of them have legal endings.

Tuskegee led to congressional hearings, the Belmont Report, and the regulatory framework that governs human subjects research today. It also resulted in a government apology and a $10 million settlement with the men who had been studied and their families. The Gelsinger case, the death of an 18-year-old in a gene therapy trial, brought program shutdowns, federal investigations, a settlement with his family, and lasting reforms to how conflicts of interest in research are disclosed and managed. Both stories are taught, correctly, as examples of how bioethics and law respond to harm.

The story of Henrietta Lacks has been taught the same way. It should not be.

What actually happened to Henrietta Lacks?

In 1951, Lacks was treated for cervical cancer at Johns Hopkins. Cells from her tumor were taken without her knowledge or consent and became the HeLa cell line, now one of the most widely used tools in biomedical research, cited in more than 100,000 scientific publications. But even though her name was always associated with the cells, her story was unknown to the public until Rebecca Skloot’s 2010 multi-prize winning book, The Immortal Life of Henrietta Lacks. The book,and subsequent movie,  brought renewed scrutiny to how her cells had been obtained and used. For decades, her family sought recognition and restitution. Courts turned them away. Courts consistently held that patients do not retain property rights in excised tissue once it is removed from the body, leaving little room for legal claims based on ownership.

A serious wrong had occurred, the world had acknowledged it, and Johns Hopkins itself eventually said it could have done more, but there was no legal remedy. Case closed.

Except it was not. New lawyers and new strategies to recharacterize her claims have brought them back to life.

What is changing, and why does it matter?

In August 2023, Thermo Fisher Scientific settled a lawsuit brought by the Lacks estate. In February 2026, Novartis reached a similar settlement. Litigation is still active against other companies. A federal court has already allowed one of these claims to move forward.

The legal theory is not about ownership of cells. It is about unjust enrichment: the principle that one party should not retain profits derived from another’s materials without compensation. Think of it this way: if your neighbor builds a fence using lumber that was yours without asking, the law does not just say that was wrong. It asks whether they should have to pay you for the benefit they received. That is the question courts are now asking about companies that have made enormous profits from HeLa cells.

This is a modest but significant shift. These claims do not revisit the core holding that patients lack property rights in excised tissue, but instead operate alongside it. Courts are not saying Lacks or her family ever owned the cells. But they are saying that profiting from them without compensation might be unfair in a way the law can and should address. That is meaningfully different from where things stood even five years ago.

So what should we be teaching?

Bioethics courses should absolutely continue to teach the Lacks case as a story about consent, exploitation, and race. That history is essential and it has not changed. But they should stop teaching it as though it is over. Casebooks and syllabi that present Lacks as a closed episode obscure an active and evolving area of law.

The Lacks case raises questions that remain genuinely open. When biological materials taken from a patient decades ago continue to generate profit today, what, if anything, do the companies using them owe? Should we judge those obligations by the standards of 1951, or by what we now expect of institutions? Is acknowledging a wrong enough if the benefits from that wrong are still flowing to someone else?

These are not hypotheticals. They are being argued in federal court right now. Students who learn the Lacks case as a closed chapter are being deprived of the most important part of the story.

Tuskegee and Gelsinger teach students what it looks like when institutions are held accountable. The Lacks case teaches something harder: that accountability is not inevitable, that it can take generations, and that the people most affected sometimes have to keep fighting long after the world has decided the story is done.

The facts of the Lacks case are singular, but the underlying issue is not. In Moore v. Regents of the University of California, a 1990 California Supreme Court case, John Moore sued after learning that his physicians had patented a cell line developed from his spleen, removed during cancer treatment, without his knowledge. He lost. The California Supreme Court held that patients do not retain property rights in excised tissue, emphasizing concerns that recognizing such rights could interfere with research by restricting access to biological materials. That ruling became the legal foundation that shut down the Lacks family’s property claims for decades. What has changed is not that courts are overturning Moore. They are not. What is changing is that unjust enrichment offers a different path, one that asks not who owns the cells but whether it is fair to keep all the profits from them.

That shift raises its own questions worth teaching. If companies face legal risk whenever they build products from tissue with a traceable source, will they become more cautious about using such materials at all? Will researchers stop sharing cell lines freely? Will the next HeLa cell line never be developed because no one wants the liability? These are not hypothetical concerns, and they do not have easy answers. They are exactly the kind of questions bioethics should be asking.

Henrietta Lacks died in 1951. Her cells remain in laboratories around the world. The companies that profit from them remain in business. Her family remains in court.

This is not a closed case. It is an ongoing one. Bioethics should teach it that way.

Jennifer S. Bard, JD, MPH, PhD, (@profbardlaw.bsky.social) is a professor of law at the University of Cincinnati College of Law and a professor of medicine, department of internal medicine, at the University of Cincinnati College of Medicine.

The post Updating the Canon: The Story of Henrietta Lacks Is Not Over appeared first on Bioethics Today.

In an effort to justify the growing landscape of AI use in healthcare, there have been countless studies and empirical arguments—ranging from concerns with the actual AI systems to patient perspectives on AI use in healthcare. However, many such studies tend to focus on the question of how to make the use of AI in healthcare more ethical, rather than challenging whether it should be used at all.

In fact, this seems reflective of the most common justification for AI use that I see parroted by both experts and lay people alike: AI is here and it’s here to stay, it’s up to us to adapt accordingly.

I find this justification rather strange and lacking any argumentative force. If I broke into your house and said that I’m here and here to stay and that you’d better just adapt to it, you probably wouldn’t be compelled by the force of my argument and let me stay. Similarly, such a justification for the use of AI in healthcare should not be accepted, and the rejection of this fallacious argument should be reflected in the informed consent process when any AI is to be used systematically in patient-centered healthcare.

For instance, one recent paper discussing disclosure of AI use in clinical care claims, without justification, that “Ultimately, AI will become a routine part of clinical care…” The paper goes on to claim that informed consent should only be required if AI is making independent decisions or if the use of AI deviates from accepted standard uses. This argument rests on the assertion that if the use of AI is the accepted medical standard in a given context, then it can be assumed that patients are consenting implicitly. This assertion rests on a misapplication of the medical standard argument, however, as the medical standard in this case is constructed upon unethical uses of AI to a significant degree.

One recent study found that approximately 65% of US hospitals use AI to assist their predictive models, most commonly for inpatient health trajectories and to identify high risk outpatients. One could argue that 65% is too low to be considered the accepted medical standard, but this would be far too ambiguous to present a strong argument for or against. Rather, there’s a far more troubling number coming out of this study—less than half of these hospitals are evaluating their AI models for bias.

The accepted medical standard argument should lose all force if it is discovered that the standard is not serving the patient’s best interest. Further still, according to Paige Nong, PhD, author of the aforementioned study, the unchecked bias of such AI models is disproportionately affecting poor and rural communities, as it is often under-resourced hospitals that are unable to properly screen AI models for bias. Despite the high percentage of hospitals using these models, it isn’t reasonable to assume that patients are implicitly consenting to put themselves at risk of receiving lower quality healthcare due to the unchecked biases of these AI models. To prevent such a risk, patients ought to be informed of AI use in their healthcare and be given the option to opt out—especially in cases of prediction of identification.

However, some might object that such a goal is impractical for several reasons. The first, and likely most common reason, would be that it’s simply too much of a hassle. Such an objection rests on the idea that most people simply don’t care that much—to require patients to undergo the informed consent process for AI use would be a waste of time for both the patient and the healthcare system. The other reason would be that such decisions should fall upon the shoulders of healthcare leadership, not the patients. In this sense, healthcare leadership has a duty to prevent the biases of AI systems from potentially harming patients, it shouldn’t be the duty of patients to attempt and avoid such systems altogether.

Such objections fail to capture the scope of general perspectives on AI use. Regarding the latter of the two reasons, it is equally impractical to assume that healthcare leadership will implement AI systems with the patient’s best interests in mind. In more affluent healthcare systems, AI is seen as a long term investment that will help to keep costs down. And as already noted, less affluent healthcare systems simply lack the resources to screen for bias. As for the former reason—that people simply won’t care enough—this sentiment severely underestimates just how much people dislike AI. One recent poll of registered voters in the US came in with over half of the participants believing that the risks of AI outweigh the benefits.

And beyond just polls a report from More Perfect Union found that in just one three month period in 2025, 20 data center projects were blocked or delayed by community organizing or pushback. Many people are indifferent to AI, but just as many people adamantly oppose it.

Regardless of the reasons, studies show that many people are exasperated by the constant encroachment of AI into nearly every facet of their lives. In this sense, it would seem absurd not to disclose AI usage in the informed consent process—AI optimists would be happy to hear it’s being used while AI pessimists would be relieved to avoid many of the ethical concerns that surround it.

Of course, I could be wrong about all of this. AI could truly benefit medicine and safely become standard use. The key term here is “safely.” The ethical concerns are just too great to overlook. Just because more than half of US hospitals are using it, with many of these using it despite serious concerns of bias, it doesn’t mean it’s right to just assume patients are implicitly consenting.

As parents love to ask their children, “if all of your friends jumped off a cliff, would you do it too?”

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

The post AI, Informed Consent, and Fallacious Reasoning appeared first on Bioethics Today.

February 27, 2026

The death of an immigrant detainee at an El Paso, Texas facility has been ruled a homicide, according to the final autopsy report obtained by NBC News. Geraldo Lunas Campos, 55, originally from Cuba, died January 3rd at Immigration and Customs Enforcement’s Camp East Montana facility at Fort Bliss, Texas.

“Based on the investigative and examination findings, it is my opinion that the cause of death is asphyxia due to neck and torso compression. The manner of death is homicide,” the El Paso County, Texas medical examiner concluded in a January 30th report.

When ICE first reported his death in a Jan. 9 press release, it stated that Lunas Campos had experienced “medical distress.” The agency said medical staff responded, initiated lifesaving measures, and requested emergency medical services. In an email to NBC News on Thursday, January 29th, a Department of Homeland Security spokesperson stated that Lunas Campos had attempted to take his own life and that the security staff had “immediately intervened to save his life.”

There are reports of other deaths and abuses at other ICE detention and processing centers in Texas, including the South Texas ICE Processing Center in Pearsall and the South Texas Family Residential Center in Dilley, and theFort Bliss Camp Montana tent city in El Paso.

Detainees report being given rotten food, inconsistent access to necessary medications, lack of prenatal care, lack of regular access to recreational areas, exposure to raw sewage, and physical and sexual abuse. There are also reports of inadequate laundry and cleaning services for detainees’ uniforms, which creates hygiene issues, and recent reports of outbreaks of scabies, measles, and other infections at multiple ICE facilities.

Inadequate medical care, a lack of access to proper sanitation, edible food, and clean water, particularly for vulnerable persons, including pregnant women, young children, the elderly, mentally ill, and those with underlying health issues, create dangerous conditions for people in these ICE facilities and are of great concern as human rights violations.

The International Committee of the Red Cross (ICRC) has a mandate under the Geneva Conventions (Article 126 of the Third Geneva Convention (1949) and Article 143 of the Fourth Geneva Convention (1949)) to visit prisoners of war, civilian internees, and other detainees to monitor conditions, ensure humane treatment, and facilitate contact with families. Suspicious deaths and apparent inhumane conditions make it clear that the Red Cross ought to promptly visit, examine, and report on the detention/prison ICE facilities in Texas.

Please initiate visits to ICE facilities in Texas to defend the human rights of powerless, vulnerable detainees imprisoned in inhumane conditions.

Arthur Caplan, PhD

Retiring professor of medical ethics, NYUGSOM, Ridgefield CT

(Institutional Affiliations Listed for Identification Only)

Signees:

1. Vardit Ravitsky, PhD, The Hastings Center for Bioethics
2. Keisha Ray, PhD
3. Dena S. Davis, JD, PhD 
4. Brendan Parent, JD
5. Jennifer Lewin, PhD
6. Lisa Kearns, MS, MA
7. Robert Baker, 
8. Vincent J. Palusci, MD, MS
9. Eileen Harrigan, MDre
10. Phoebe Friesen, PhD
11. Bryan Pilkington, PhD
12. Sunil Aggarwal, MD, PhD, University of Washington
13. Mary-Lou Weisman BA
14. Ghaiath Hussein, MD, PhD
15. Carolyn Riley Chapman, PhD MS
16. James Lytle, JD
17. Brian H. Childs, PhD, Mercer University School of Medicine
18. Susan Gilbert
19. Lisa DeTora, PhD, Hofstra University
20. Katie Grogan, DMH
21. Dale Jamieson, Ph.D., Professor Emeritus, New York University
22. Andrew McFadyen, MHSc
23. Lena Milam
24. Melissa Moorehead
25. Kathleen Bachynski, PhD, Muhlenberg College
26. Mark Kuczewski, PhD
27. Richard N. Gottfried, JD, former NY State Assembly Member and Health Committee chair
28. Samantha Klitenic, JD
29. Jill Fisher, PhD
30. Catharine E. Krebs, PhD
31. Linda Granowetter MD, Clinical Professor of Pediatrics, NYU Grossman School of Medicine (retired)
32. Thalia Arawi, PhD, T2P Center for Health Ethics Training & Consultancy
33. Howard P. Forman MD, Yale School of Medicine
34. Liza-Marie Johnson MD, MPH, MSB, St. Jude Children’s Research Hospital
35. Lea Brandt, PhD, OTD, MA, University of Missouri Center for Health Ethics 
36. Andy Flescher, PhD, Stony Brook University
37. Monica Rose McLemore PhD, MPH, RN, FADLN, FNYAM, New York University
38. R. Alta Charo, JD, Professor Emerita of Law & Bioethics, University of Wisconsin
39. Eric M. Meslin, PhD, FRSC, FCAHS, ICD.D
40. Joel Michael Reynolds, PhD, Georgetown University and School of Medicine
41. J. Russell Teagarden, DMH
42. Quill R Kukla, PhD, Georgetown University
43. Cory Ellen Gatrall, PhD, RN, University of California, San Francisco
44. Paul Kelleher, PhD
45. Luis F. Angel MD   NYULangone Health
46. Daniel Suárez-Baquero PhD, MSN, RN, University of Washington
47. Carl Elliott MD PhD, University of Minnesota
48. Amy Haddad, MSN, PhD, MFA, FAAN, Creighton University
49. Paul Root Wolpe, Ph.D., Emory University
50. Debra DeBruin, PhD, University of Minnesota
51. Gustavo Ortiz-Millan, PhD
52. Nancy Berlinger, PhD, The Hastings Center for Bioethics
53. Omisade Burney-Scott, The Black Girl’s Guide to Surviving Menopause 
54. Grover C. Gilmore, PhD
55. Stuart  Kaufer, LMSW
56. Doug Opel MD, MPH, University of Washington School of Medicine
57. John Entwistle MD PhD, Thomas Jefferson University
58. Maria Merritt, PhD, Johns Hopkins University
59. Samuel Gorovitz, Ph.D, Dr.Sci.(Hon), Syracuse University
60. Jennifer Needle-Suarez, MD, MPH, University of Minnesota
61. Kenneth W Goodman, PhD, FACMI, FACE, University of Miami
62. Robert D. Truog, MD, MA Harvard Medical School 
63. Gwendolyn P. Quinn, Ph.D., FAACE, 
64. Anna Valdez, PhD, RN, Professor of Nursing, Sonoma State University
65. Brian S. Carter, MD, FAAP, University of Missouri-Kansas City School of Medicine
66. Vanessa Northington Gamble, MD, PhD, The George Washington University
67. Keren Ladin, PhD, MSc Tufts University
68. Laurie Zoloth, Ph.D., University of Chicago
69. Nanette Elster, JD, MPH
70. David DeGrazia, PhD, George Washington University 
71. Robert Cook-Deegan, MD, Arizona State University
72. Rowan Kim, MS, Rosalind Franklin University of Medicine and Science
73. Bruce Gelb, MD FACS, NYU Langone Health
74. James Tabery, PhD
75. Brandon Brown, MPH, MPH, University of California, Riverside
76. Peter Ochs, Ph.D., University of Virginia
77. Stuart Rennie, Ph.D.
78. Nancy M. P. King, JD
79. Susan Resneck Pierce, Ph.D.
80. Jonathan D. Moreno, Ph.D., University of Pennsylvania
81. Matthew K. Wynia, MD, MPH, University of Colorado
82. Sarah C. Hull, MD, MBE, Yale School of Medicine
83. Jeremy A. Greene, MD, PhD, Johns Hopkins University School of Medicine
84. Michelle N. Meyer, PhD, JD
85. Kathleen M. Boozang, JD, LLM, Seton Hall Law
86. Anita Ho, PhD, MPH, UCSF/UBC
87. Barron Lerner, MD, PhD, NYU Langone Health 
88. Eric T. Juengst, Ph.D, UNC-Chapel Hill
89. Nadia N. Sawicki, JD, MBe, Loyola University Chicago School of Law
90. Nathaniel Mamo, MA, NYU Grossman School of Medicine
91. Julian Wilson, The Black Girl’s Guide to Surviving Menopause
92. Max F. Kramer, Ph.D.
93. Jean Cadigan, PhD, UNC-Chapel Hill
94. Kate Saylor, Ph.D.
95. Timothy F. Murphy, Ph.D., University of Illinois College of Medicine
96. Ann M. Heesters, PhD, University of Toronto
97.  Claire Young, MPH
98. Daniel Wikler, Ph..D., Harvard School of Public Health, emeritus
99. Richard Klein, formerly FDA
100. Walter Glannon, PhD
101. Bonnie Steinbock, PhD
102. Eileen Sullivan-Marx, PhD, RN, FAAN, NYU
103. Karla FC Holloway, PhD. 
104. Holly K. Tabor, PhD, Stanford University School of Medicine
105. Alyssa Burgart, MD, MA, Stanford University School of Medicine
106. Michele Goodwin, J.D., LL.M., SJD, Georgetown Law
107. Deborah R. Barnbaum, PhD, Kent State University 
108. Harald Schmidt, PhD, University of Pennsylvania
109. Jason T. Eberl, PhD, Saint Louis University 
110. Steven Goodman, MD, PhD, Stanford University
111. Rosamond Rhodes, Icahn School of Medicine at Mount Sinai 
112. Jeffrey Blustein, Ph.D CUNY
113. Linda Tewksbury, MD
114. Leonard M. Fleck, Ph.D. Michigan State University
115. James Silk, MA, JD, Yale Law School
116. Kaija Freborg, DNP, RN, Sonoma State University
117. Elliot Dorff, Rabbi, Ph.D., American Jewish University
118. Joel T. Wu JD MPH MA, University of Minnesota
119. Chelsey R. Carter, MPH, PhD, Yale School of Public Health 
120. Carl H. Coleman, JD, Seton Hall Law School
121. Robert Swidler, MA, JD
122. Emily E. Anderson, PhD, MPH
123. Kara B. Ayers, PhD
124. Esther Berkowitz, MBChB, MA
125. Jeffrey Spike, PhD, The George Washington University School of Medicine
126. Sharon Gray, MA, RN, HEC-C
127. Paula Goodman-Crews, LCSW, MSW, HEC-C
128. Jessica F Berkowitz, MD 
129. Frances Batzer, MD, MBE
130. Katie Clark, DNP
131. Jelena Kalinić, MA, science communicator
132. Thomas E. Merchant, Juris Doctor, MS
133. Diana Harris, PhD, MBE
134. Jamie Webb, PhD
135. Eli Weber, PhD, Kaiser Permanente, SCAL–San Bernardino County Area
136. Diane M Korngiebel, DPhil
137. Thomas D. Harter, PhD
138. Lawrence Gostin, Distinguished University Professor, Georgetown Law
139. Joanne Lynn, MD
140. Carol Shoshkes Reiss, PhD, Professor Emerita, NYU
141. Audrey R. Chapman, PhD, UConn School of Medicine
142. Connie M. Ulrich, PhD, MSN, RN, FAAN
143. Miriam Merad, MD PhD, Icahn  school of medicine at Mount Sinai 
144. Angela Starkweather, PhD, ACNP-BC, RN
145. Linda Ohler, MSN, APRN, CCTC, FAAN, FAST Retired, NYU
146. Sara Taub, MD, MBE
147. Melissa Heidelberg, MSBE
148. Katherine Taylor, JD, PhD
149. Cody Feikles, PhD(c), MA, MTS, HEC-C, OSF Healthcare
150. Rafael Escandon, DrPH, HEC-C, DG Bioethics, Seattle, WA 
151. E. Goldblatt Hyatt, DSW, MBE
152. Susan L Herrmann, PhD, MA, MSW 
153. Cheryl Bettigole, MD, MPH, MA, University of Pennsylvania
154. Amal Dadi, MA
155. Joy Frestedt, PhD, CPI, RAC, FRAPS, FACRP; Frestedt Incorporated, MN 
156. Victoria Velasquez-Feikles, PhD(c), MSc
157. Mayli Mertens, PhD, Atlas Bioethics Center
158. Rachel Groth, PhD
159. Drew Lewis, MD
160. Allison Squires, PhD, RN, New York, NY

The post An Open Letter to the American Red Cross and the International Red Cross: Calling for Immediate Humanitarian Visits to ICE Internment Facilities in Texas appeared first on Bioethics Today.

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

ncreasing attention has been devoted to questionable research practices (QRPs) in the health and behavioral sciences. Practices such as presenting post hoc findings as if they were a priori hypotheses, failing to report null results in a study with multiple outcomes, and manipulating sample sizes or covariates to yield statistically significant results (“p-hacking”), are ethically and practically problematic because they create the impression that research findings are more robust than they actually are. More generally, they can foster cynicism about the scientific endeavor and skepticism about the findings from health and behavioral science research. Miscitations are another QRP that has generally received less attention than QRPs focused on methodological and statistical issues.

According to Cobb et al., miscitation is a “failure to adhere to the practice of providing a complete and correct account of the cited content of a study” (300). Citations can be accurate, partially accurate (omitting relevant context or nuance that would qualify the findings), or inaccurate (making claims contrary to or irrelevant to the findings from the cited study). Miscitations in scientific papers can impede theory development, contribute to a false consensus in which researchers assume that particular findings are more consistent than they are, and support the implementation of interventions whose empirical support is weaker than presumed. Although these are all serious concerns, miscitations of scientific studies in government reports and other documents that inform public policy can have even more wide-ranging harmful consequences. These documents are often used to set funding priorities, justify laws and regulations, and guide public health decisions. Distortion of the evidence-base can result in a misallocation of scarce resources, where research and policies supporting dubious, ineffective, or harmful interventions are promoted, while efforts into promising and well-established interventions may be undermined. These effects may compound over time, threatening individual and public health outcomes (including increased injuries, disability, and death) and eroding public trust in the scientific enterprise (see, for example, the impact of The Joint Commission’s pain standards on the opioid epidemic). Consequently, it is essential that the citations to empirical research in “The Make America Healthy Again (MAHA) Report”, which aims to set government policy for improving children’s physical and mental health, should be free from inaccuracies.

When it was first released, the MAHA Report garnered attention for citing studies that did not exist. A revision of the report deleted all but one of these phantom studies, but some researchers whose work was cited in the report claimed that their work did not find what the report claimed it found. Despite these anecdotal reports, there has not been a systematic review of the citation accuracy of the MAHA Report. Assessing whether these high-profile miscitations were anomalies or whether they reflect a more pervasive pattern in the MAHA report can help discern whether the scientific literature was used to accurately inform evidence-based policies (i.e., policies and recommendations were made following a careful review of the evidence) or whether the research citations were used as rhetorical window dressing to bolster preconceived beliefs.

We applied Cobb et al.’s tripartite coding system to the 154 citations to peer-reviewed empirical studies cited in the MAHA Report. Because we were interested in how the authors of the MAHA Report used scientific research to support their claims, we limited coding to peer-reviewed empirical studies (including meta-analyses) and did not code citations to narrative reviews, policy papers, commentaries, government documents, etc. Each citation was independently coded by two of the coauthors, and the pairings were rotated so that each author coded roughly the same number of citations with each of the other coauthors. After completing their independent coding, the two raters met and resolved any discrepancies in their ratings. If, after discussion, the two raters were unable to reach agreement, they assigned the less critical code to the citation, giving the MAHA Report the benefit of the doubt and providing a lower bound estimate of the rate of miscitations. We examined interrater reliability using the initial codes provided by the independent raters before they resolved any discrepancies. A weighted kappa was used to assess the level of interrater agreement for these ordinal data. Kappa corrects for chance agreement, so values between .61–.80 are evidence of substantial agreement and values greater than .81 are indicative of almost perfect agreement. The weighted kappa for the present study was substantial, .69 (95% CI [.60–.78]).

Only 75 (48.7%) of the 154 citations to peer-reviewed studies in the MAHA Report were accurate, whereas 48 (31.2%) were partially accurate, and 31 (20.1%) were inaccurate. These results represent a strikingly high rate of inaccurate and partially accurate citations. By contrast, Cobb et al. found that 81.2% of the citations in major psychology journals were accurate. Our recent review of citation accuracy in American Psychological Association amicus briefs found that 20.3% of the citations were partially accurate and that 6.9% of the citations were inaccurate. Perfect citation accuracy may be aspirational, but when fewer than half of a document’s citations are accurate, epistemic integrity is seriously weakened and the reliability of the evidence becomes unclear. In the context of health care policies affecting children, this uncertainty raises concerns regarding the ethical principles of beneficence and nonmaleficence by obscuring whether recommendations accurately reflect established risks and benefits. Implementing policies with unclear evidentiary support can have long-lasting consequences, particularly in developmental samples.

Although a detailed review of all the inaccurate citations in the MAHA Report is beyond the scope of this editorial, a sampling of the inaccurate and partially accurate citations in the report can give readers a sense of the problem. In a section outlining “proven harms” of overtreatment, the MAHA Report cited Waters et al. to support the claim that “Adenotonsillectomy for children with sleep apnea, an historically common procedure, conferred no benefit in trials” (p.60), when in fact Waters et al. reported that “Improvements were seen for polysomnogram arousals and apnea indices and for parent reports of symptoms…, behavior…, overall health, and daytime napping” (1), so the claim that adenotonsillectomy provided no benefits is a gross misrepresentation of the study. The MAHA Report cited Hibbs et al.’s analysis of data submitted to the Vaccine Adverse Event Reporting System (VAERS) to support the claim that “Many health care professionals do not report to VAERS because they are not mandated to do so or they may not connect the adverse event to a vaccination” (63). Hibbs et al. examined the reporting of vaccination errors (e.g., inappropriately scheduled vaccination, storage and dispensing errors) and not adverse reactions to vaccines.

Partially accurate citations can often be as misleading as inaccurate citations. For example, the report cited Sofi et al.’s meta-analysis to support the claim that “Research also consistently links diets centered on whole foods to lower rates of obesity, type 2 diabetes, heart disease, certain cancers, and mental illness” (p. 26). Although this meta-analysis found associations between a Mediterranean diet and lower heart disease and cancer, none of the supporting citations examined obesity or diabetes. More importantly, some of the whole foods highlighted within the MAHA Report as beneficial—including beef and whole milk—are rarely consumed within a Mediterranean diet. To support its call for reducing food safety regulations, the MAHA report wrote “the implementation of the Hazard Analysis and Critical Control Points (HACCP) system has further complicated operations for smaller producers without the expertise or capital to navigate such comprehensive safety protocols”, citing Dima, Radu, and Dobrin. Although readers could reasonably assume that this study examined US producers, the MAHA Report failed to note that Dima et al. investigated the Romanian meat industry. As a final example the MAHA Report wrote, “Tympanostomy tubes for recurrent ear infections, despite being recommended by professional societies, did not reduce infections in trials—showing common surgeries cause harm without offering benefits”, citing Hoberman et al. Hoberman et al. found that tubes did not improve outcomes compared to antibiotic treatment; however, several secondary treatment outcomes did favor the tube group and there was minimal evidence of serious adverse events during the 2-year monitoring period in either treatment arm. Omitting that the comparison was an active treatment may not have been a serious miscitation, except that the MAHA Report also advocated against the use of antibiotics writing “Antibiotics are over-prescribed to millions of US children annually, causing serious harms like rashes, diarrhea, recurrent infections, allergic reactions, and antibiotic resistance”.

A recent editorial in Science argued that “checking citations is just as important as carrying out experiments” and noted that there was at least one citation in the MAHA Report where the “content was misrepresented”. Our systematic review found that in fact more than half of the citations were less than fully accurate. The MAHA Report accurately identified several legitimate concerns about the health and mental health of children in the United States. However, effective interventions should be informed by the science and evidence-based, rather than misrepresenting the research literature to claim support for questionable policies.

Notes

Interested readers can find a complete listing of all of the citations and their codes at https://osf.io/b4rew/overview?view_only=a84540244e314bb6835bc1350ddcc6d1

David K. Marcus, PhD; Keira L. Monaghan, Jessica L. Fales, PhD & Christopher T. Barry, PhD

The post Citation Accuracy in the Make America Healthy Again Report (MAHA) appeared first on Bioethics Today.

This editorial appears in the March 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 effect on the number of patients willing to seek care. This problem was anticipated based on experiences in the first Trump administration. Similarly, hospitals prepared for the possibility that ICE would seek information regarding patient immigration status or come to a hospital seeking a particular patient. As a result, hospitals refreshed their “front-door policies” that require a judicial warrant in order to release information or to admit ICE agents to enter any private areas such as examination rooms. However, most hospitals did not prepare for an increase in the number of visits by patients presenting for care who are already in ICE custody. For instance,

A 24 year old woman is brought to the emergency department by three Immigration and Customs Enforcement (ICE) officers. The patient reports that she is pregnant and may be in labor. The emergency medicine physicians and staff wish to examine her and evaluate whether admission to the Labor and Delivery (L & D) unit is appropriate.

The ED resident physicians wish to take a complete history and examine the patient privately. They ask the ICE officers to step out of the patient’s room. The officers expressed that they preferred to remain in the room. The nurses contacted the hospital security office for assistance knowing that their security officers are familiar with the process of handling interactions with law enforcement agents who are guarding a patient.

A security officer arrived and provided the ICE agents with a summary sheet of the hospital’s Forensic Patient Policy. As that sheet did not specifically address the patient’s right to privacy, the officers remained at the bedside during examinations. They also handcuffed one of the patient’s arms to the bed rails as the policy directed. On the second day, the agents began to interfere with the patient’s meals. That is, they would move the food tray out of reach of the patient for several hours after it was delivered, presumably to motivate the patient to seek discharge.

Most hospitals have long had policies that govern the care of patients in the custody of law enforcement. These policies are called forensic patient policies and are largely unknown to most physicians and health-care workers. They are draconian and have ethically failed patients for many years. In the current environment, they motivate the hospital to engage in the moral mistreatment of patients in ICE custody. We suggest that bioethicists and health-care providers must advocate for the revision of these policies to support the mission of delivering humane patient care.

The Problem of Forensic Patient Policies

Perhaps the best guidance for health-care professionals and facilities confronting novel and stressful situations is to treat patients as patients. The health-care professionals in the situation described tried to respect basic patient privacy and dignity by asking the ICE agents to step outside the room. They were distressed that agents would handcuff a patient to the bed who posed no discernible safety concern.

Of course, hospitals cannot have different policies based on which law enforcement agency brings the patient to the facility and patients in ICE custody are assimilated to their forensic patient policies. As a result, this patient who posed no discernible threat to anyone in the facility was treated similarly to a violent criminal who poses an immediate threat.

The hospital security officer provided the ICE agents with the hospital protocol governing forensic patients. This protocol informed the agents that the hospital (a) required them to restrain the patient at all times by handcuffing at least one wrist to the bed railing, (b) that the law enforcement officers have jurisdiction over “patient privileges” and may restrict them at any time, and (c) that the agents must “guard” the patient at all times. The protocol also asserted that the medical and nursing staff will have control over all aspects of the patient’s medical care. However, it did not mention any of the usual patient rights such as privacy, confidentiality, or the requirements of informed consent for treatment.

Forensic patient policies are written from the perspective of hospital security and hospital general counsel. The overriding theme of such policies is minimizing the danger to hospital personnel. This is a highly laudable goal and health-care professionals are too often subject to violence and abuse. Nevertheless, the sudden arrival of an increased number of patients who are detained only for lack of immigration authorization, possessing no criminal history and posing little threat, calls for forensic patient policies that have greater flexibility. This will not only be more just for patients detained by ICE but for all forensic patients.

Forensic patient policies should platform good patient care and patient rights in addition to safety considerations. In doing so, they also lay out what law enforcement officers can expect and what is expected of them. Policies and protocols should assert that the facility respects the rights of patients as articulated by federal and state laws and established medical ethics. Thus, the facility supports patient privacy during history taking and medical examinations and interventions, the minimal use of restraints necessary, and access to basic human needs such as food, clothing, and toilets (Working Group on Policing and Patient Rights, Georgetown University Health Justice Alliance).

Similarly, the heart of contemporary medical ethics is the right of patients to make their medical decisions according to the established norms of informed consent. The policy should state clearly that forensic patients retain this right. Similarly, any patient “privileges” such as access to phones and outside visitors that may be under the discretion of the law enforcement officials should be clearly identified and noted as limited to those enumerated. This will avoid misunderstandings resulting from expansive interpretations of what constitutes a privilege, e.g., meals, by law enforcement officers.

Finally, health-care facilities should consider outlining an expectation of law enforcement officers that they will minimize their movements within the facility. The appearance of law enforcement officers in hospitals can be unexpected and unsettling to patients. As a result, the facility should consider offering assistance such as bringing meals to officers in order to avoid unsettling patients in areas such as cafeterias.

Let’s Do No Harm

In sum, the arrival of a new category of forensic patients, often vulnerable and nonviolent, has thrown a spotlight onto the failing of our forensic patient policies that are driven by fear and worst-case scenarios. We have an opportunity to develop new policies that balance safety with respect for the dignity of patients and help law enforcement officers to carry out their work without jeopardizing established norms of patient care.

Forensic patient policies and protocols should be thought of mainly in terms of their moral force and suasion. Law enforcement is most likely to respect these protocols because they understand that health-care institutions have particular norms that do not jeopardize their law enforcement mission.

While much attention may be justly focused on the inadequacies and irregularities of the way ICE agents conduct their business, bioethicists and hospitals can no longer dodge our responsibility to reform our practices and procedures. Failures to treat detainee patients with dignity and respect have an origin in the established policies of our institutions. We must do better for them and other forensic patients.

Disclosure statement

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

Mark Kuczewski, PhD; Amy Blair, MD; Theresa Nguyen, J.D.; M. Laura Garcia-Izaguirre, J.D; Gregory Dober, MA

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A recent New York Times investigative report by Mike McIntire describes how genetic and brain imaging data from thousands of U.S. children were used by a small group of researchers to advance a race science agenda. The data came from two large, federally funded studies—the Philadelphia Neurodevelopmental Cohort (PNC) and the Adolescent Brain Cognitive Development (ABCD) study—and were made available by the National Institutes of Health (NIH) to outside researchers in 2018 and 2020.

Dr. Bryan J. Pesta and colleagues analyzed data on home computers, outside of any official university role and without IRB oversight, and published numerous papers promoting the idea that there are biologically based, inherited differences in intelligence between races and ethnicities. The conclusions and figures from those papers spread through message boards, internet blogs, and various forms of social media to support white supremacist arguments. Even after these researchers faced sanctions and substantial ethical and scientific criticism, their work continued to spread and was cited by artificial intelligence platforms responding to queries about race and intelligence. This case is an example of successful Citizen Scientific Racism (CSR): the use of scientific methods and language to lend legitimacy to racist ideologies outside established systems of accountability. CSR is a particularly malignant example of counterscience that exposes a fundamental vulnerability of Open Science: it is a system built on assumptions of shared values, mutual accountability, and trustworthiness, but it can be misused to promote discriminatory and false ideals.

Open Science is a Vulnerable System

NIH strategic plans and policies strongly endorse Open Science and FAIR (findability, accessibility, interoperability, and reusability) principles for data stewardship. Researchers who collect large‑scale genomic data with federal funding are generally required to share de‑identified data through NIH‑managed repositories. The aim is to accelerate scientific discovery and improve health and medical care.

Study teams may request specific data use limits to ensure that future uses of acquired data align with the original informed consent. Researchers requesting data from controlled-access databases must explain their research goals and must promise to avoid stigmatizing research and adhere to responsible research practices.

In this case, those safeguards proved insufficient. The New York Times investigation points out significant weaknesses in NIH oversight, including inadequate scrutiny of applications to access data from NIH-controlled databases, overreliance on “good faith” compliance with policies prohibiting stigmatizing research, and failure to respond to reported violations in a timely manner. Dr. Pesta and colleagues were able to exploit these weaknesses to obtain access and use the data in ways that directly conflicted with the values and expectations of the families who had agreed to participate, families who trusted the study team, their institution, and the NIH to protect their data and use it for the greater good.

What those families may not have realized is that they were also placing their trust in the broader scientific community, and in society more generally.  The NIH is working to strengthen protections against inappropriate data release, but those protections exist in tension with data accessibility. If a major consideration in allowing access involves determining whether the researcher is legitimate, whether their research question is appropriate, then the system is vulnerable to subjectivity, bias, and political change.

Distrust Fuels Counterscience

One of the most concerning aspects of the misuse of PNC and ABCD data is the way that Dr. Pesta and colleagues continue to justify their actions, framing their work as the courageous pursuit of scientific knowledge in a battle against “woke condemnation,” ideological oppression, and constraints on academic freedom. These arguments are eerily similar to those used to justify the disruptive overhaul and politicization of government health agencies like the NIH, the Centers for Disease Control and Prevention, and the Federal Drug Administration. The very structures meant to safeguard scientific integrity and protect patients and research subjects from harm have been characterized by the Trump administration and the Make America Healthy Again (MAHA) coalition as classist institutions prioritizing liberal agendas, silencing outsiders, retarding scientific advancement, and preventing citizens from accessing innovative therapies.

In this same vein, in April 2025, a federal prosecutor at the Department of Justice sent a series of letters to top U.S. medical journals accusing them of biased publishing practices, being “partisans in various scientific debates,” and inquiring as to how the journals handle articles with “competing viewpoints.” Dr. Pesta claims that his research was censored because he was asking unpopular “dangerous” questions, and not because of any flaws in the research. And as the New York Times article points out, Dr. Pesta has reason to be encouraged, since the current political administration is enabling the active rejection of established scientific knowledge (e.g., the safety and efficacy of immunizations) and redirecting funding and regulatory protections towards research that aligns with their priorities – which include eliminating diversity, equity, and inclusion policies, research, and education.

Research priorities for federal funding often shift under the influence of different presidents. But the answers to questions about the proper aims of science, what research questions should be asked, and whether some types of research ought not be pursued should not depend on which political party is in power. These are normative ethical questions that ought to be considered within the historical and current social context, informed by an understanding of scientific rigor and validity, as well as bioethics and moral philosophy, for the answers will have a significant impact on human flourishing, and ultimately reflect the values of that society itself.

Towards a Shared Moral Vision for Open Science

In our current day of increasing political polarization and lack of social cohesion, a just Open Science can only be achieved through broader, more inclusive conversations that acknowledge the root causes of distrust in our fellow citizens and institutions, that seek to articulate shared values, and that center the inherent human dignity and value of all people. Achieving a shared moral vision of Open Science requires societal and institutional reforms in partnership with historically marginalized populations. Until then, the only mechanism that can ensure that a research participant’s data is used in accordance with their values is for the participant to retain ownership and control of their data. This is Genomic Dignity, the idea that all people have the right to own their genomic data, the right to control when, for how long, with whom, and for what purposes to share it, and the right to an auditable trail of its use. This level of ownership and control is possible through encryption and watermarking techniques that are currently being developed and tested. Other safeguards include requiring researchers to conduct analyses within a centralized computational environment, such as the All of Us researcher workbench, and limiting or completely eliminating downloading of data from the system. There is much work to be done to earn the trust of research subjects, particularly those from marginalized populations. Genetics researchers must exercise social responsibility to consider and prevent the potential for harmful misuse of their data and analyses. And yet they cannot and should not bear that burden alone. Institutions, funders, policymakers, and the broader public must share this responsibility if Open Science is to advance the common good rather than contribute to harm.

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The Department of Health and Human Services released the report, The Treatment of Pediatric Gender Dysphoria (herein “the report”), in November of 2025. The report was the basis for the justification of the proposed rules in 42 CFR parts 441, 457, and 482—changes to Medicaid funding for “sex-rejecting” procedures for children with particular emphasis on its ethical analysis:.

The HHS Review makes clear that ‘‘the evidence for benefit of pediatric medical transition is very uncertain, while the evidence for harm is less uncertain.’’  The HHS Review cites widely accepted principles of medical ethics to conclude that when ‘‘medical interventions pose unnecessary, disproportionate risks of harm, healthcare providers should refuse to offer them even when they are preferred, requested, or demanded by patients.

The report’s ethical analysis, however, is based on a narrow and selective interpretation of the evidence. It then proceeds to gravely misunderstand and misapply key ethical principles. The report’s ethical flaws potentially stem from the lack of expertise of its authors, none of whom included pediatric bioethicists or clinicians who work in the field of gender medicine. This is particularly notable for a distinctly pediatric ethical question. There is legitimate concern that these experts were excluded from the process that generated the report because the report was never intended to be an objective scientific and ethical analysis of pediatric gender care. Rather, its commissioning Executive Order, entitled “Protecting Children from Chemical and Surgical Mutilation“, claims to issue a blanket ban on gender care for those younger than 19. The report’s ethical analysis thus proceeds from a political mandate and should be met with the strongest of skepticism. Additionally, there is a growing body of peer-reviewed analysis detailing the scientific and methodological problems in the report.

The report’s authors claim that care for transgender youth has received little critical attention from bioethicists. This is both patently false and also assumes that the provision of pediatric gender affirming care (GAC) is somehow novel or exceptional, rather than being consistent with established principles of pediatric ethics. We previously responded to the report’s misapplication of pediatric bioethics. The well established four principles of bioethics applied to the current facts of GAC lead to comprehensive and individualized care in determining which patient will benefit rather than total bans on care for all.  

Respect for autonomy

Respect for autonomy is always a consideration in medical ethics and even in pediatrics. Beginning around the age of 13, adolescents have been shown to have a similar ability to make informed decisions as adults. Supported by parents, medical decision-making—weighing the burdens, benefits, risks, and alternatives—can be of equal quality to that of adults, even in GAC.

Adolescents have growing autonomy as they age, but there is still a need to support and constrain decision-making. The concept important to decision-making in ethics is capacity. Capacity is the ability to make decisions. It is decision-based, meaning the question is often “capacity for which decision?” As detailed by the AAP, but ubiquitous across medicine, capacity is demonstrated by the ability to evidence and communicate a choice, understand the relevant information and facts, appreciate the situations and consequences, and the ability to assess the information in a rational way. 

Statements in the report such as “…young people cannot deliberate about the relevant considerations in a manner that is appropriately attentive to the seriousness and complexity of the decision…” are speculative, overgeneralized, and highly value-laden. It is true that with burgeoning autonomy we want to support and even temper adolescent decision-making. It certainly will be true that some young people will lack this ability, but to say they all do is a clear misunderstanding of adolescent ethics and development. Respecting adolescent autonomy is important, even if it is not fully adhered to, and their capacity to make decisions should be assessed like any adult patient.  

Beneficence/Non-Maleficence

Beneficence and non-maleficence work together, in balance, to help determine where interventions fall within the spectrum of shared decision-making (SDM). The balance between these two principles can sometimes depend on patients’ and families’ values, or on how one views the amount or certainty of a treatment’s benefit relative to the potential burden it might bring. These considerations all works together to determine whether decisions in pediatrics fall within the zone of parental discretion.

The Report seems to suggest that no adolescent has ever benefited from gender affirming care. But many have benefited. The report argues that the benefits of GAC for adolescents are unreliable and that it has an unfavorable risk/benefit ratio. But this is an “…egregious misuse of the findings…” Gender affirming care has shown to benefit individuals who undergo care. Systematic reviews often assign the term low certainty to observational studies. Low certainty does not mean no benefit rather it means that SDM should occur to determine the benefit-to-burden ratio for an individual patient. In SDM, parents, the patient, and clinician decide together how the balance of benefits and burdens, along with the uncertainty fit for an individual patient in line with their individual values and preferences.

This is not unique in pediatrics. There are many interventions utilized through SDM that lack strong systematic review data. If everything done in medicine had such data, we would not need clinicians to synthesize the unique individual presentation, the current theory and evidence, the pharmacological and physiological data, and the unique values of the patient. And as such, it requires careful and thoughtful process by clinicians, along with parents and patients, to determine whether an individual child might benefit, when, and with what intervention. The data around GAC is similar to the data around many other types of medical care in pediatrics, for which patients find to be beneficial, even if not every patient will find it beneficial. It is important that good assessment, discussion, and decision-making are undertaken.

Justice

The report then applies justice to issues of diagnostic overshadowing for which other conditions may be present and symptoms may be misattributed to. The report makes a speculative claim that the “…gender clinic model of care becomes Maslow’s hammer to which every problem appears as a nail (233).” That GAC clinics are identifying every symptom as gender dysphoria is a significant and unsubstantiated accusation. The report’s source for this accusation is one clinician’s statement in a newspaper article and an op-ed for the Washington Post by that same clinician. The report claims, based on this one report, that this demonstrates an injustice being done by all GAC clinics. Yet, injustice seems more evident in condemning all care based on one unverified report. Justice in this case argues for what the Cass Review recommends is a coordinated and organized process to determine whether an adolescent may benefit from gender affirming care.

Conclusion

The report claims that bioethicists have not provided critical attention to pediatric GAC. Yet there have been pediatric bioethicists who have analyzed this care. These bioethicists overwhelmingly reject the report’s ethical conclusions based in the four principles of bioethics. Pediatric GAC is consistent with the four principles of bioethics. Adolescents have burgeoning autonomy and that should be respected as moral agents supported through SDM. The balance of beneficence and non-maleficence may be clinically different for different patients. Unreliable benefits in the evidence cannot be conflated with no benefits. In pediatric GAC the favorability of any treatment in terms of the proportion of benefit to burden will depend on many patient-specific factors. These require consideration through SDM that is utilized in nearly every clinical discussion in pediatrics. Justice in pediatric GAC argues for good process in determining which patient will benefit from which treatment. Justice requires access, not bans.     

The public comment period for the two proposed CMS rules ends February 17^th at 11:59 PM. However, the misapplication of pediatric bioethics framing the rhetorical narrative, along with an all-or-nothing, rather than a nuanced and thoughtful approach to this population, will continue to wield policy discussions.

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