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				<title>Climate Change: Examining a Fear of the Impractical</title>
				<link>https://bioethicstoday.org/blog/climate-change-examining-a-fear-of-the-impractical/</link>
				<pubDate>Thu, 11 Jun 2026 20:24:56 +0000</pubDate>

										<category><![CDATA[Environmental Ethics]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=136227</guid>
				<description><![CDATA[<p>Climate change is shaping up to be a global catastrophe. I don’t think this is controversial. There will be food and water shortages, millions of people will be displaced due to rising sea levels, and this will unequally affect the poor and marginalized. As the degradation of the planet leads to worse health outcomes (to [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/climate-change-examining-a-fear-of-the-impractical/">Climate Change: Examining a Fear of the Impractical</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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<p class="wp-block-paragraph">Climate change is shaping up to be a global catastrophe. I don’t think this is controversial. <a href="https://www.un.org/en/climatechange/science/causes-effects-climate-change">There will be food and water shortages, millions of people will be displaced due to rising sea levels, and this will unequally affect the poor and marginalized.</a> As the degradation of the planet leads to worse health outcomes (to put it lightly), bioethicists have noted this relationship, calling for more sustainable practices in healthcare and health research (e.g., <a href="https://pubmed.ncbi.nlm.nih.gov/35922120/">Samuel and Richie 2023</a>, <a href="https://pubmed.ncbi.nlm.nih.gov/37104666/">Ray and Cooper 2025</a>, <a href="https://www.tandfonline.com/doi/full/10.1080/15265161.2025.2526749">Salloch 2026</a>).</p>



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



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



<p class="wp-block-paragraph">Following the “Yes, but…” formula, <a href="https://www.tandfonline.com/doi/full/10.1080/15265161.2026.2657876">David Resnik</a> argues that Salloch’s proposal could serve to overburden IRBs and research ethics committees, which typically don’t possess the required expertise. In another response, <a href="https://www.tandfonline.com/doi/full/10.1080/15265161.2026.2657877">Rieder, Earl, and Hickey</a>  argue that stakeholders do not have the resources to assess ecological concerns, and imposing such requirements would waste time and could even cost people their health or lives. Both papers echo the idea that the potential harms to the environment created by health research—which although relatively minor compared to other industries, <a href="https://www.who.int/westernpacific/news/item/18-09-2025-up-to-5--of-climate-emissions-come-from-healthcare.-a-new-coalition-of-asia-pacific-countries--backed-by-who--plans-to-change-that">are not insignificant</a>—are far outweighed by the value created by such research.</p>



<p class="wp-block-paragraph">Similar arguments have been central to environmental ethics for a long time. For instance, Walter Sinnott-Armstrong’s influential article, “<a href="https://academic.oup.com/book/40950/chapter-abstract/349158744?redirectedFrom=fulltext">It’s Not <em>My </em>Fault: Global Warming and Individual Moral Obligations</a>,” argues that taking one’s gas guzzling truck for a joy ride isn’t morally impermissible—yes it isn’t necessarily a good thing for the environment, but in the grand scheme of things the emissions are so minimal that they can’t be traced to any harms.</p>



<p class="wp-block-paragraph">Outside of academia, the argument that <a href="https://www.theguardian.com/sustainable-business/2017/jul/10/100-fossil-fuel-companies-investors-responsible-71-global-emissions-cdp-study-climate-change">100 corporations contribute to 70% of global emissions</a> is often brought up as a way to minimize individual responsibility. It’s hard to be convinced that using a paper straw will help the environment, as some billionaire takes a flight on his private jet to his third superyacht so he can work on plans to put another AI data center right in the middle of a marginalized community.</p>



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



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



<p class="wp-block-paragraph">Moreover, now is not the time to worry about practicality. <a href="https://www.science.org/doi/10.1126/sciadv.adh2458">The health and well-being of billions of people are at risk</a> if we continue to let the health of our planet be ravaged. Regardless of who is to blame for the catastrophe we find ourselves facing, the mantra of “it’s not <em>my </em>fault” shouldn’t be reflective of how we respond. Bioethicists should be setting the tone for cultural shifts away from a hyper-fixation on efficiency, practicality, and maximizing shareholder profits, especially when they’re contributing to significant harms. Rather, we should be willing to take the extra step, make the sacrifice, and be altogether impractical in the pursuit of a better and healthier world for all.</p>



<p class="wp-block-paragraph">I’ll end with one more point about impracticality. It seems to me that a large part of bioethics&#8217; history is founded on an effort to go against the practical method in favor of a more critical, ethical, and potentially impractical one. It was much more practical to not cure the men in the Tuskegee Syphilis Study. Why lose all those perfectly good subjects? It was very practical to use the Willowbrook Institute to study the transfer of Hepatitis. Where else would one find a perfect testing ground for the spread of disease like that?</p>



<p class="wp-block-paragraph">These studies were efficient, no doubt. They likely avoided the “administrative delays” and “bureaucratic wrangling” that Earl, Rieder, and Hickey fear might slow down the progress of valuable studies if we ask researchers and research ethics committees to consider the environmental impacts of health research.</p>



<p class="wp-block-paragraph">Luckily, there were bold whistleblowers for both Tuskegee and Willowbrook who decided the lives of these subjects were more important than the results of the study. I can only hope we make the same decision about the health of our planet before it’s too late.</p>



<p class="wp-block-paragraph"><em>Seamus Donahue, MA, is the Program Manager for the Indiana University Center for Bioethics</em></p>



<p class="wp-block-paragraph"></p>
<p>The post <a href="https://bioethicstoday.org/blog/climate-change-examining-a-fear-of-the-impractical/">Climate Change: Examining a Fear of the Impractical</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>Beyond Good Intentions: Structural Justice and the Future of Hospital-based Violence Intervention Programs</title>
				<link>https://bioethicstoday.org/blog/beyond-good-intentions-structural-justice-and-the-future-of-hospital-based-violence-intervention-programs/</link>
				<pubDate>Thu, 11 Jun 2026 20:01:44 +0000</pubDate>

										<category><![CDATA[Clinical Ethics]]></category>
												<category><![CDATA[Justice]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=136140</guid>
				<description><![CDATA[<p>Black Americans experience nonfatal firearm assault at a rate more than 20 times that of White Americans. For Black men, this epidemic runs even deeper. It reflects a pattern that has held for decades: firearm assault rates are highest among Black Americans, while rates of firearm suicide are highest among White Americans. Black Americans bear [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/beyond-good-intentions-structural-justice-and-the-future-of-hospital-based-violence-intervention-programs/">Beyond Good Intentions: Structural Justice and the Future of Hospital-based Violence Intervention Programs</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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<p class="wp-block-paragraph">Black Americans experience nonfatal firearm assault at a rate <a href="https://pubmed.ncbi.nlm.nih.gov/39074371/">more than 20 times</a> that of White Americans. For Black men, this epidemic runs even deeper. It reflects a pattern that has held for decades: firearm assault rates are highest among Black Americans, while rates of firearm suicide are highest among White Americans. Black Americans bear the heaviest burden of gun assaults and are the primary population that <a href="https://www.thehavi.org/what-is-an-hvip">hospital-based violence intervention programs (HVIPs)</a> are designed to serve. The question is whether HVIPs are built to meet the compounding harm survivors carry or whether the frameworks guiding them fall short of the justice they claim to pursue.</p>



<p class="wp-block-paragraph">Designed to break the cycle of violent injury, HVIPs are multidisciplinary programs that bring together medical staff and trusted, community-based partners to provide safety planning and <a href="https://everytownresearch.org/report/hospital-based-violence-intervention-programs-a-guide-to-implementation-and-costing/">wraparound services</a> to individuals who survive violent injuries. Central to HVIPs are <a href="https://journals.sagepub.com/doi/epub/10.1177/00469580251384773">Violence Prevention Professionals (VPPs)</a>, individuals with lived experience who work directly with survivors at the bedside during what is called the “golden hour”, the critical window where a survivor may be most receptive to support and imagining a different future. Today, <a href="https://digital.lib.washington.edu/researchworks/items/50f18693-1d11-4a1a-89ec-9d584e6de2eb/full">more than 100 HVIPs</a> are operating across the United States.</p>



<p class="wp-block-paragraph"><a href="https://www.facs.org/quality-programs/trauma/advocacy-and-injury-prevention/firearm-injury-prevention-activities/violence-intervention-programs/">Typically run by trauma surgeons and housed within trauma centers</a>, HVIPs bring valuable clinical grounding but also a particular set of assumptions about what healing should look like and whose expertise counts. When physician-led HVIPs crowd out community knowledge, they risk treating symptoms while leaving root causes poorly understood or untouched. <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC12441253/">Research conducted with CVI frontline workers</a> confirms what many already know: community violence is driven by structural inequities such as unemployment, failed education systems, criminal legal system involvement, and over policing or de-policing. HVIPs created without centering community voice reproduce the problem they claim to address.</p>



<p class="wp-block-paragraph">Public health developed &#8220;social determinants of health&#8221; to move medicine toward structural explanations of illness, but as <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC3222512/">Braveman and colleagues</a> have shown, the concept is more often named than acted on. HVIPs risk the same pattern: using structural language (equity, lived experience, community-based) without structural change, naming inequity without reorganizing who defines care or who benefits from it. They remain embedded in bioethical traditions built around individualized, transactional care never designed to ask who holds power or who bears its costs. In this framework, the survivor becomes a case to be managed rather than a person whose injury tells a more complex story of decades of intentional disinvestment and displacement. Wraparound services can connect a survivor to housing resources without addressing the policies that produced housing instability. Crisis intervention can interrupt a cycle of retaliation without addressing the conditions that made retaliation feel like the only viable response. This is not a failure of individual programs or practitioners, many of whom carry their own lived experience of these systems. It is a structural problem that requires a structural answer.</p>



<p class="wp-block-paragraph">In healthcare, the dominant definition of justice traces back to <a href="https://www.jstor.org/stable/j.ctvjf9z6v">John Rawls&#8217;s 1971 <em>A Theory of Justice</em>,</a> which established fairness and equal basic rights as the foundation for a just society, with scarce resources flowing to those with the greatest need. Applied to HVIPs, this framing is not wrong, but it is radically insufficient. As Charles Mills argued, <a href="https://harvardpolitics.com/interview-with-charles-w-mills/">Rawls&#8217;s framework</a> assumes historical social conditions were relatively fair to begin with, an assumption that collapses when confronted with the actual history of disinvestment, criminalization, and structural exclusion shaping HVIP participants’ lives. If the starting point was never fair, principles designed to ensure fair distribution cannot produce justice, only redistribution within a system already organized around racial hierarchy. An HVIP built on Rawlsian principles will ask whether survivors receive equitable access to services, not why they are disproportionately Black, why they live in disinvested neighborhoods, or who created those conditions. Procedural fairness cannot repair historical harm. It can only manage its consequences.</p>



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



<p class="wp-block-paragraph">What HVIPs need is a framework of structural justice: one that names the cumulative harm of intentionally unjust systems and refuses to reproduce those hierarchies internally. HVIPs cannot dismantle structural violence on their own, but they can choose to be part of the ecosystem working toward that end rather than operating as if individual intervention is enough. This means VPPs are compensated and included in leadership rather than subordinated to clinical authority, and program success is measured by survivor-defined outcomes rather than institutional metrics. When VPPs hold genuine authority over how care is defined and delivered, programs become more responsive to the actual conditions survivors face. When success is measured by survivor-defined outcomes rather than institutional metrics, programs are held accountable to the people they serve rather than the systems that fund them. That shift from managing individuals to transforming conditions is what structural justice makes possible. How VPPs are paid and positioned reflects what Miranda Fricker called <a href="https://academic.oup.com/book/32817">epistemic injustice</a>, the systematic discounting of community knowledge in favor of clinical authority. When VPPs are treated as program staff rather than expert knowledge-holders, the program reproduces the very hierarchy it claims to challenge.</p>



<p class="wp-block-paragraph">Some programs are already leading the way. <a href="https://www.newhavenindependent.org/2023/05/09/new_cash_pilot_targets_gun_violence/">Yale New Haven Hospital&#8217;s HVIP</a> now offers unconditional direct cash transfers to survivors. This practice implicitly acknowledges what a structural justice framework makes explicit: that it is not enough to ration scarce medical resources when the needs of survivors arise from social inequality itself. Doing justice to survivors means acknowledging the systems that made them vulnerable in the first place and building programs accountable to that history, not just to clinical outcomes.</p>



<p class="wp-block-paragraph">But justice cannot stop at the bedside. Most survivors do not recover in isolation; they return to households that absorb much of the weight of recovery. Primary caregivers manage medications, navigate insurance, provide emotional support, and absorb economic hardship, frequently without support, recognition, or any voice in how programs define success. <a href="https://www.sciencedirect.com/science/article/pii/S0047235222000812?via%3Dihub">Research has documented the significant challenges caregivers face</a>, yet HVIPs have largely continued to treat the survivor as an individual rather than a person embedded in an ecosystem. A structural justice framework demands that we ask not only what survivors need, but what those who care for them need. Their unmet needs and definitions of success are not secondary data.</p>



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



<p class="wp-block-paragraph"><em>William Wical, PhD, MA is a postdoctoral fellow at the Johns Hopkins Bloomberg School of Public Health in the Center for Gun Violence Solutions</em></p>



<p class="wp-block-paragraph"><em>Nazsa S. Baker, PhD, MA is the Research Director and Program Manager at the University of California, San Francisco, The Wraparound Project</em></p>
<p>The post <a href="https://bioethicstoday.org/blog/beyond-good-intentions-structural-justice-and-the-future-of-hospital-based-violence-intervention-programs/">Beyond Good Intentions: Structural Justice and the Future of Hospital-based Violence Intervention Programs</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>How the IVF Industry Exploits Down Syndrome Anxiety to Hard Sell the Controversial PGT-A Technique</title>
				<link>https://bioethicstoday.org/blog/how-the-ivf-industry-exploits-down-syndrome-anxiety-to-hard-sell-the-controversial-pgt-a-technique/</link>
				<pubDate>Tue, 02 Jun 2026 19:02:48 +0000</pubDate>

										<category><![CDATA[Clinical Ethics]]></category>
												<category><![CDATA[Reproductive Ethics]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=135901</guid>
				<description><![CDATA[<p>In vitro fertilization (IVF) is emotionally and financially taxing, especially for women of advanced maternal age. As maternal age increases, the risk of chromosomal abnormalities (aneuploidy) in embryos rises, heightening fears of conditions like Trisomy 21, or Down syndrome. Capitalizing on this anxiety, the IVF industry heavily promotes Preimplantation Genetic Testing for Aneuploidy (PGT-A) as [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/how-the-ivf-industry-exploits-down-syndrome-anxiety-to-hard-sell-the-controversial-pgt-a-technique/">How the IVF Industry Exploits Down Syndrome Anxiety to Hard Sell the Controversial PGT-A Technique</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
]]></description>
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<p class="wp-block-paragraph">In vitro fertilization (IVF) is emotionally and financially taxing, especially for women of advanced maternal age. As maternal age increases, the risk of <a href="https://www.mdpi.com/2077-0383/14/14/5166">chromosomal abnormalities (aneuploidy)</a> in embryos rises, heightening fears of conditions like Trisomy 21, or Down syndrome. Capitalizing on this anxiety, the IVF industry heavily promotes Preimplantation Genetic Testing for Aneuploidy (PGT-A) as a definitive solution. PGT-A involves biopsying a developing embryo to screen for chromosomal abnormalities before transfer. However, clinical evidence and <a href="https://bergermontague.com/cases/igenomix-pgt-a-embryo-genetic-testing-class-action-lawsuit">lawsuits</a> suggest <a href="https://pubmed.ncbi.nlm.nih.gov/32100030/">PGT-A&#8217;s benefits are overstated</a>, while its risks—including misdiagnosis and discarding viable embryos—are profoundly underestimated. This article explores how the IVF industry exploits Down syndrome anxiety to drive PGT-A uptake, examines the procedure&#8217;s contested efficacy, and discusses mosaic embryo self-correction.</p>



<p class="wp-block-paragraph"><strong>The Exploitation of Down Syndrome Anxiety</strong></p>



<p class="wp-block-paragraph">For women over 35, fearing a child with Down syndrome is a significant psychological burden. The IVF industry leverages this fear in marketing, positioning PGT-A as an essential safeguard. Advertisements often use <a href="https://pubmed.ncbi.nlm.nih.gov/39785671/">fear-based messaging</a>, suggesting that without PGT-A, older women face high risks of miscarriages or having children with severe genetic disorders. Genetic testing companies even used <a href="https://www.businessinsider.com/stolen-down-syndrome-image-used-in-genetic-testing-ads-2015-6">unauthorized images of children with Down syndrome</a> to promote services, framing the condition as a tragic outcome.</p>



<p class="wp-block-paragraph">Sociodemographic shifts, like delayed childbearing and declining fertility rates in East Asian societies, exacerbate this anxiety. In Confucian cultures, strong emphasis on family lineage, filial piety, and academic excellence places immense pressure on prospective parents to produce <a href="https://www.jstor.org/stable/pdf/27041932.pdf">&#8220;perfect&#8221; offspring</a>. The global trend of increasing maternal age elevates aneuploidy risks, intensifying the desire for genetic screening. This societal pressure creates fertile ground for the IVF industry to market PGT-A as a necessary step to mitigate anxieties and <a href="https://pubmed.ncbi.nlm.nih.gov/27987318/">fulfill cultural expectations</a>.</p>



<p class="wp-block-paragraph">This marketing stigmatizes disability and creates a coercive environment where patients feel morally obligated to opt for PGT-A. By framing PGT-A as a tool for &#8220;having your best baby,&#8221; clinics exploit parental vulnerability, transforming an experimental procedure into a <a href="https://www.instagram.com/p/DRQFB9wkqP5/">perceived standard of care</a>.</p>



<p class="wp-block-paragraph"><strong>The Contested Efficacy of PGT-A</strong></p>



<p class="wp-block-paragraph">PGT-A marketing claims it improves IVF success rates by ensuring only chromosomally normal (euploid) embryos are transferred. However, data from several large-scale randomized controlled trials (RCTs) contradict these claims.</p>



<p class="wp-block-paragraph">The STAR trial, a prominent multicenter study on PGT-A, <a href="https://pubmed.ncbi.nlm.nih.gov/31551155/">failed to demonstrate a significant improvement</a> in ongoing pregnancy rates across all age groups. Similarly, a recent pilot RCT comparing PGT-A to traditional morphological selection in women aged 35–42 found <a href="https://www.mdpi.com/2077-0383/14/14/5166">no significant differences</a> in clinical pregnancy rates or live birth rates. Furthermore, a comprehensive multicenter study involving over 1,200 patients concluded that IVF with PGT-A <a href="https://pubmed.ncbi.nlm.nih.gov/34818479/">did not yield better cumulative live birth outcomes</a> than IVF without PGT-A.</p>



<p class="wp-block-paragraph">Critics argue PGT-A functions merely as a &#8220;<a href="https://pubmed.ncbi.nlm.nih.gov/32100030/">purification procedure</a>&#8221; discarding embryos deemed abnormal, rather than improving the cohort&#8217;s inherent quality. In doing so, PGT-A introduces the risk of damaging the embryo during biopsy and relies on the assumption that a trophectoderm biopsy accurately reflects the chromosomal makeup of the inner cell mass, which develops into the fetus.</p>



<p class="wp-block-paragraph">Non-Invasive Prenatal Testing (NIPT) as an Alternative</p>



<p class="wp-block-paragraph">While PGT-A is performed on embryos before implantation, <a href="https://www.myivfanswers.com/video/non-invasive-prenatal-testing-nipt/">Non-Invasive Prenatal Testing (NIPT)</a> is another genetic screening option for pregnant women. NIPT is a blood test, typically offered in the first trimester, analyzing cell-free fetal DNA in the mother&#8217;s bloodstream to screen for common chromosomal conditions. It is a non-invasive, more affordable alternative to PGT-A, carrying no risk to the pregnancy itself, unlike invasive diagnostic tests such as amniocentesis.</p>



<p class="wp-block-paragraph">However, NIPT is a screening test, not a diagnostic one. While boasting high detection rates for common aneuploidies, it is <a href="https://pubmed.ncbi.nlm.nih.gov/35986330/">prone to false positives</a>, especially for rarer conditions. A <a href="https://www.aamc.org/news/prenatal-screenings-can-lead-false-positives-heightened-anxiety">false positive result</a> can lead to significant anxiety for expectant parents, often prompting unnecessary follow-up invasive diagnostic procedures that carry risks. The <a href="https://pubmed.ncbi.nlm.nih.gov/37644576/">positive predictive value (PPV)</a> of NIPT for less common chromosomal abnormalities can be quite low, meaning a positive result is more likely incorrect than correct in certain scenarios. This limitation underscores the importance of comprehensive genetic counseling to ensure patients understand that NIPT results require confirmation through diagnostic testing. The existence of NIPT, a cheaper and less invasive option, highlights the questionable necessity and aggressive marketing of the expensive and invasive PGT-A.</p>



<p class="wp-block-paragraph"><strong>Misdiagnosis and the Legal Fallout</strong></p>



<p class="wp-block-paragraph">PGT-A technology&#8217;s inherent limitations have led to alarming rates of misdiagnosis, resulting in the discarding of potentially healthy embryos. Studies suggest that PGT-A may be <a href="https://www.fertstert.org/article/S0015-0282%2818%2930437-0/fulltext">inaccurate</a> in up to 40% of cases, largely due to mosaicism—where an embryo contains a mixture of normal and abnormal cells. Because a PGT-A biopsy only samples a few cells from the trophectoderm, it cannot reliably determine whether the entire embryo is aneuploid or merely mosaic.</p>



<p class="wp-block-paragraph">This high error rate has sparked significant legal backlash. Multiple class-action lawsuits have been filed against prominent genetic testing companies, including <a href="https://bergermontague.com/cases/igenomix-pgt-a-embryo-genetic-testing-class-action-lawsuit/">Igenomix</a> and <a href="https://time.com/7264271/ivf-pgta-test-lawsuit/">CooperGenomics</a>. Plaintiffs allege consumer fraud, breach of warranty, and deceptive marketing, claiming these companies falsely advertised PGT-A as a proven, accurate, and reliable method for increasing IVF success. In Australia, Monash IVF had to compensate 700 former IVF patients a total of <a href="https://www.theguardian.com/australia-news/article/2024/aug/22/monash-ivf-reaches-56m-settlement-with-700-former-patients-after-destroying-potentially-viable-embryos-ntwnfb">A $56 million</a> for faulty genetic testing. The lawsuits highlight the devastating <a href="17https:/www.classaction.org/news/pgt-a-lawsuit-claims-experimental-unproven-genetic-testing-falsely-touted-as-accurate-and-reliable">emotional and financial toll</a> on patients advised to discard embryos that may have been capable of developing into healthy babies.</p>



<p class="wp-block-paragraph"><strong>The Phenomenon of Mosaic Embryo Self-Correction</strong></p>



<p class="wp-block-paragraph">The most compelling argument against widespread PGT-A use is the human embryo&#8217;s biological plasticity. Recent research has illuminated the phenomenon of &#8220;<a href="https://pubmed.ncbi.nlm.nih.gov/38275600/">embryonic self-correction</a>,&#8221; wherein mosaic embryos possess the remarkable ability to normalize their chromosomal makeup as they develop.</p>



<p class="wp-block-paragraph">Several mechanisms have been proposed for this self-correction. One primary mechanism is the preferential elimination of aneuploid cells through <a href="https://pubmed.ncbi.nlm.nih.gov/32528010/">autophagy-mediated apoptosis</a>. As the embryo develops, abnormal cells are systematically marginalized or destroyed, allowing healthy euploid cells to proliferate and form the fetus. Another proposed mechanism involves the <a href="https://pubmed.ncbi.nlm.nih.gov/41543933/">extrusion of abnormal chromosomes during cell division</a>, effectively &#8220;rescuing&#8221; the cell from aneuploidy.</p>



<p class="wp-block-paragraph">Clinical outcome data strongly support the viability of mosaic embryos. Numerous studies have documented <a href="https://pubmed.ncbi.nlm.nih.gov/31759546/">healthy live births</a> following the transfer of embryos previously classified as mosaic by PGT-A. A landmark study analyzing the transfer of 1,000 mosaic embryos demonstrated that while they may have slightly lower implantation rates compared to fully euploid embryos, they still result in a significant number of <a href="https://pubmed.ncbi.nlm.nih.gov/33685629/">healthy pregnancies and live births</a>, with no increased risk of congenital abnormalities. This evidence suggests that PGT-A&#8217;s rigid binary classification of embryos as &#8220;normal&#8221; or &#8220;abnormal&#8221; is biologically flawed and leads to the tragic waste of viable reproductive potential.</p>



<p class="wp-block-paragraph">The aggressive promotion of PGT-A within the IVF industry represents a troubling intersection of medical capitalism and the exploitation of patient anxiety. By preying on the fears of older women regarding Down syndrome and other chromosomal abnormalities, clinics and genetic testing companies have normalized a costly procedure whose efficacy is not supported by robust clinical data. The failure of large-scale trials to prove PGT-A&#8217;s clinical effectiveness, combined with high misdiagnosis rates and the emerging understanding of mosaic embryo self-correction, underscores the urgent need for greater transparency and regulatory oversight. Patients deserve evidence-based counseling that accurately reflects the limitations of PGT-A, ensuring that the pursuit of a healthy baby does not come at the cost of discarding viable embryos.</p>



<p class="wp-block-paragraph"><em>Alexis Heng Boon Chin, PhD is an associate professor of biomedical science at Peking University</em></p>



<figure class="wp-block-image size-full"><img decoding="async" width="690" height="461" src="https://bioethicstoday.org/wp-content/uploads/2026/06/Picture.png" alt="" class="wp-image-136124" srcset="https://bioethicstoday.org/wp-content/uploads/2026/06/Picture.png 690w, https://bioethicstoday.org/wp-content/uploads/2026/06/Picture-300x200.png 300w" sizes="(max-width: 690px) 100vw, 690px" /></figure>



<p class="wp-block-paragraph"><a data-saferedirecturl="https://www.google.com/url?q=https://www.a4fertility.com/blogs/maternal-wellness/eradicate-down-syndrome-for-your-baby-with-pgt-before-delivery/&amp;source=gmail&amp;ust=1780671849171000&amp;usg=AOvVaw0ukYZ3mOaNISiTeBh5Ic9z" style="color: rgb(17, 85, 204); font-family: Arial; font-size: 18px; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; white-space: normal; background-color: rgb(255, 255, 255);" href="https://www.a4fertility.com/blogs/maternal-wellness/eradicate-down-syndrome-for-your-baby-with-pgt-before-delivery/" target="_blank">https://www.a4fertility.com/blogs/maternal-wellness/eradicate-down-syndrome-for-your-baby-with-pgt-before-delivery/</a></p>
<p>The post <a href="https://bioethicstoday.org/blog/how-the-ivf-industry-exploits-down-syndrome-anxiety-to-hard-sell-the-controversial-pgt-a-technique/">How the IVF Industry Exploits Down Syndrome Anxiety to Hard Sell the Controversial PGT-A Technique</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>Mapping the Moral Brain: Probing the Architecture of Ethical Decision-Making with TMS</title>
				<link>https://bioethicstoday.org/blog/mapping-the-moral-brain-probing-the-architecture-of-ethical-decision-making-with-tms/</link>
				<pubDate>Tue, 02 Jun 2026 18:34:27 +0000</pubDate>

										<category><![CDATA[Neuroethics]]></category>
												<category><![CDATA[Research Ethics]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=135997</guid>
				<description><![CDATA[<p>There is growing research interest in the prevalence of moral injury – a profound psychological harm caused by judgments which deviate from what an individual or society views as “right” – among those who have been exposed to trauma, such as veterans and survivors of abuse. However, what makes a judgment “moral”? Philosophers have long [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/mapping-the-moral-brain-probing-the-architecture-of-ethical-decision-making-with-tms/">Mapping the Moral Brain: Probing the Architecture of Ethical Decision-Making with TMS</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<content:encoded><![CDATA[
<p class="wp-block-paragraph"></p>



<p class="wp-block-paragraph">There is growing research interest in the prevalence of <a href="https://psycnet.apa.org/record/2014-14055-003?doi=1">moral injury</a> – a profound psychological harm caused by judgments which deviate from what an individual or society views as “right” – among those who have been exposed to trauma, such as veterans and survivors of abuse. However, what makes a judgment “moral”? Philosophers have long approached this question through frameworks such as virtue ethics, which emphasizes the character and intentions of the agent; deontology, which focuses on the rightness or wrongness of the action itself; and utilitarianism, which emphasizes the consequences of an action. These traditions offer powerful ways to think about ethics, but they do not fully explain the rapid, everyday moral intuitions we use to navigate social life. At the <a href="https://www.usd.edu/Academics/Colleges-and-Schools/sanford-school-of-medicine/Research-and-Outreach-Centers/Center-for-Brain-and-Behavior-Research">Center for Brain and Behavior Research</a> in the Sanford School of Medicine at the University of South Dakota, in collaboration with the <a href="https://sites.google.com/view/neuroethics-group/home">NeuroComputational Ethics Research Group</a> at North Carolina State University, our interdisciplinary team is using non-invasive brain stimulation to examine the <a href="https://pubmed.ncbi.nlm.nih.gov/16768379/">neural systems that support moral judgment</a> in order to better support individuals affected by moral injury.</p>



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



<p class="wp-block-paragraph">Our research is guided by the <a href="https://www.tandfonline.com/doi/full/10.1080/21507740.2014.939381">Agent-Deed-Consequence (ADC) model</a>, which proposes that moral judgments draw on <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0204631">three separable sources of information</a>: the agent who performs an action, the deed itself, and the consequences that follow. These components map broadly onto longstanding philosophical perspectives, but the ADC model also provides a framework for testing how the brain integrates them in real time. Participants read brief moral scenarios in which information about the agent, deed, and consequence is systematically varied, and they are asked to make judgments about the moral status of each component.</p>



<p class="wp-block-paragraph">To measure the brain’s response during these judgments, we combine TMS with high-density electroencephalography (EEG) and eye-tracking. EEG records electrical activity from sensors placed on the scalp, allowing us to measure how brain activity changes from moment to moment as participants evaluate each scenario. This approach is inspired by <a href="https://pubmed.ncbi.nlm.nih.gov/21981668/">prior work</a> suggesting that the brain may process intentional deeds and downstream consequences differently: actions may elicit relatively rapid evaluative responses, whereas consequences may require more sustained cognitive integration. Our study tests whether temporarily reducing activity in specific brain regions changes how people weigh agents, deeds, and consequences.</p>



<p class="wp-block-paragraph">We focus on two neural hubs:</p>



<ul class="wp-block-list">
<li><strong>The temporoparietal junction (TPJ).</strong> The TPJ is <a href="https://pubmed.ncbi.nlm.nih.gov/12948738/">closely associated with theory of mind</a>, or the ability to infer other people’s beliefs, intentions, and mental states. In the ADC framework, this makes the TPJ especially relevant for evaluating the agent—the person who performs an action and the motives or intentions attributed to that person.</li>



<li><strong>The dorsolateral prefrontal cortex (DLPFC).</strong> The DLPFC is involved in executive function, cognitive control, and rule-based reasoning. We associate this region with the deed component because it <a href="https://pubmed.ncbi.nlm.nih.gov/21515641/">may support evaluations</a> of whether an action violates rules, obligations, or moral principles. In addition to the TPJ, the DLPFC likely contributes to evaluating outcomes and integrating contextual, social, and cognitive information.</li>
</ul>



<p class="wp-block-paragraph">By integrating behavioral ratings, EEG, and eye-tracking, we are beginning to map how these regions contribute to moral judgment. Preliminary data (n=28) suggest that inhibiting the TPJ may alter how participants judge the immorality of agents relative to control stimulation. <a href="https://www.nature.com/articles/s41598-019-40743-y">EEG analyses</a> also show changes in alpha-band event-related spectral perturbation (ERSP) when participants evaluate an agent’s character. Because alpha-band activity is often associated with changes in cortical engagement and inhibitory control, these findings may indicate that stimulation shifts the neural processes participants use when evaluating social and moral information. Such results enable researchers to understand interindividual differences in moral decision-making and account for changes in intuition, especially for those afflicted by moral injury.  </p>



<p class="wp-block-paragraph">These findings have implications beyond the laboratory. By identifying how specific brain regions impact moral decision-making according to the ADC model, this work can help clarify the neural basis behind disrupted moral and social judgment among various populations in need. In other words, these findings over the long term could inform interventions for people affected by neurological injury or trauma where disruption of prefrontal or parietal networks may contribute to changes in <a href="https://link.springer.com/article/10.1007/s11920-000-0031-5">personality</a>, social behavior, or <a href="https://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.3002452">decision-making</a>. Interventions would target these networks in order to help persons avoid self-harm, exhibit more empathy and tolerance towards others, and maintain personal accountability for moral decisions. TMS can, essentially, offer a clinical pathway towards moral repair.</p>



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



<p class="wp-block-paragraph"><em>Michael Pflanzer,<sup>1</sup> Jamie Scholl,<sup>2</sup> Shaun Respess,<sup> 1</sup> Lee Baugh<sup>2</sup> and Veljko Dubljevic<sup>1*</sup></em></p>



<ol class="wp-block-list">
<li>North Carolina State University</li>



<li>University of South Dakota</li>
</ol>



<p class="wp-block-paragraph">*Corresponding author</p>
<p>The post <a href="https://bioethicstoday.org/blog/mapping-the-moral-brain-probing-the-architecture-of-ethical-decision-making-with-tms/">Mapping the Moral Brain: Probing the Architecture of Ethical Decision-Making with TMS</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>Centering Our Social World in Planetary Health Research Ethics</title>
				<link>https://bioethicstoday.org/blog/when-ice-brings-you-the-patient-hospitals-must-stop-victimizing-forensic-patients-clone-clone-2/</link>
				<pubDate>Mon, 01 Jun 2026 17:32:45 +0000</pubDate>

										<category><![CDATA[Editorial-AJOB]]></category>
												<category><![CDATA[Environmental Ethics]]></category>
												<category><![CDATA[Ethics]]></category>
												<category><![CDATA[Public Health]]></category>
												<category><![CDATA[Research Ethics]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=136058</guid>
				<description><![CDATA[<p>This editorial appears in the June Issue of the American Journal of Bioethics Planetary ethics, or examining the moral relationship between humans and the physical world, is a growing field of inquiry related to the broader discipline of environmental ethics. Essentially, more people interested in the health of our planet and the negative impact humans [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/when-ice-brings-you-the-patient-hospitals-must-stop-victimizing-forensic-patients-clone-clone-2/">Centering Our Social World in Planetary Health Research Ethics</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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<p class="wp-block-paragraph"></p>



<p class="wp-block-paragraph"><em><strong><a href="https://www.tandfonline.com/toc/uajb20/26/6?nav=tocList" type="link" id="https://www.tandfonline.com/toc/uajb20/26/6?nav=tocList">This editorial appears in the June Issue of the American Journal of Bioethics</a></strong></em></p>



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



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



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



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



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



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



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



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



<p class="wp-block-paragraph"></p>



<p class="wp-block-paragraph"><em>Keisha Ray, PhD</em></p>



<p class="wp-block-paragraph"></p>
<p>The post <a href="https://bioethicstoday.org/blog/when-ice-brings-you-the-patient-hospitals-must-stop-victimizing-forensic-patients-clone-clone-2/">Centering Our Social World in Planetary Health Research Ethics</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>Ashley Revisited: Reflections and Lessons Twenty Years Later</title>
				<link>https://bioethicstoday.org/blog/ashley-revisited-reflections-and-lessons-twenty-years-later/</link>
				<pubDate>Mon, 01 Jun 2026 17:31:53 +0000</pubDate>

										<category><![CDATA[Clinical Ethics]]></category>
												<category><![CDATA[Editorial-AJOB]]></category>
												<category><![CDATA[Ethics]]></category>
												<category><![CDATA[Pediatrics]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=136060</guid>
				<description><![CDATA[<p>This editorial appears in the June Issue of the American Journal of Bioethics Twenty years ago, Dan Gunther and I published our experience using high-dose estrogen to attenuate the growth of a young girl with severe and permanent neurodevelopmental disability that left her non-verbal, non-ambulatory, and completely dependent on others for her care. Gunther was [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/ashley-revisited-reflections-and-lessons-twenty-years-later/">Ashley Revisited: Reflections and Lessons Twenty Years Later</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
]]></description>
				<content:encoded><![CDATA[
<p class="wp-block-paragraph"></p>



<p class="wp-block-paragraph"><em><strong><a href="https://www.tandfonline.com/toc/uajb20/26/6?nav=tocList" type="link" id="https://www.tandfonline.com/toc/uajb20/26/6?nav=tocList">This editorial appears in the June Issue of the American Journal of Bioethics</a></strong></em></p>



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



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



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



<h2 class="wp-block-heading">Lessons from the Initial Ethics Consultation</h2>



<h3 class="wp-block-heading">Expand the Working Group</h3>



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



<h3 class="wp-block-heading">Examine Intuitions Carefully</h3>



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



<h3 class="wp-block-heading">Doing Nothing is Also a Decision</h3>



<p class="wp-block-paragraph">Much of the public criticism focused on the perceived harms of intervention. Yet nonintervention also carries physical, emotional, and relational consequences. Ethical analysis requires comparing the risks and benefits of both action and inaction, recognizing that both carry moral weight.</p>



<h3 class="wp-block-heading">Frame and Organize the Ethical Questions Clearly</h3>



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



<h3 class="wp-block-heading">Respect Parental Authority within Limits</h3>



<p class="wp-block-paragraph">When reasonable people disagree about a child’s best interests, decision-making typically rests with parents, terrain that has subsequently been described as the zone of parental discretion.</p>



<h2 class="wp-block-heading">Lessons from the Media Storm</h2>



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



<h3 class="wp-block-heading">Good Ethics Starts with Good Facts</h3>



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



<h3 class="wp-block-heading">Avoid Reducing Complexity to Soundbites</h3>



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



<h3 class="wp-block-heading">Engage Criticism Thoughtfully and Learn from It</h3>



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



<h2 class="wp-block-heading">What Has Changed—and What Has Not</h2>



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



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



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



<h2 class="wp-block-heading">Unresolved Ethical Questions</h2>



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



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



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



<h2 class="wp-block-heading">Tragic Choices and Moral Practice</h2>



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



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



<p class="wp-block-paragraph">Stanley Hauerwas has observed that living morally does not guarantee good outcomes. It does, however, call us to engage seriously with the responsibilities we bear to one another, especially the most vulnerable. The Ashley case continues to challenge us to think deeply about how best to do that.</p>



<p class="wp-block-paragraph"></p>



<p class="wp-block-paragraph"><em>Douglas S. Diekema, MD, MPH</em></p>



<p class="wp-block-paragraph"></p>
<p>The post <a href="https://bioethicstoday.org/blog/ashley-revisited-reflections-and-lessons-twenty-years-later/">Ashley Revisited: Reflections and Lessons Twenty Years Later</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>When Social Media Becomes Your Doctor: Ethical Concerns in Women’s Health</title>
				<link>https://bioethicstoday.org/blog/when-social-media-becomes-your-doctor-ethical-concerns-in-womens-health/</link>
				<pubDate>Fri, 22 May 2026 18:43:27 +0000</pubDate>

										<category><![CDATA[Public Health]]></category>
												<category><![CDATA[Social Media]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=135854</guid>
				<description><![CDATA[<p>From TikTok to Instagram, social media has become one of the most powerful influences on how people understand health and illness. Nearly 90% of American adults turn to social media for healthcare information. Rising healthcare costs, limited time within busy schedules, and the convenience of digital accessibility have all contributed to this shift. Yet social [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/when-social-media-becomes-your-doctor-ethical-concerns-in-womens-health/">When Social Media Becomes Your Doctor: Ethical Concerns in Women’s Health</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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<h2 class="wp-block-heading"></h2>



<p class="wp-block-paragraph">From TikTok to Instagram, social media has become one of the most powerful influences on how people understand health and illness. <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC10617996/#pz12-27">Nearly 90% of American</a> adults turn to social media for healthcare information. Rising healthcare costs, limited time within busy schedules, and the convenience of digital accessibility have all contributed to this shift. Yet social media allows both information and <a href="https://pubmed.ncbi.nlm.nih.gov/33470931/">misinformation</a> to spread rapidly, often with little distinction between the two. Unlike traditional healthcare systems, these platforms operate as private entities rather than under direct government oversight. While licensed healthcare professionals are held to professional and ethical standards, individuals without formal medical training can also widely share health advice, often reaching millions of viewers.</p>



<p class="wp-block-paragraph">Women’s health is especially affected by this shift. Historically, women have been <a href="https://cihr-irsc.gc.ca/e/50833.html">underrepresented</a> in clinical research, contributing to real gaps in knowledge about symptoms, treatments, and long-term outcomes. Because evidence-based medicine relies on rigorous research, patients may feel that certain concerns in women’s health are inadequately addressed within the healthcare system. When individuals feel their symptoms are dismissed or not fully understood, they may turn to social media for validation and solutions. Online content often provides simple explanations and quick fixes, which can feel more satisfying than the uncertainty that sometimes accompanies evidence-based medicine or research that is still evolving.</p>



<p class="wp-block-paragraph">As a result, many women seek answers outside traditional healthcare settings. One trend that has gained significant traction online is the idea of “balancing hormones,” a concept that is widely promoted but rarely clearly defined.</p>



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



<p class="wp-block-paragraph">At the same time, it is important to acknowledge that increased public attention toward women’s hormone health can be beneficial. Greater awareness has helped shed light on endocrine disorders in women, menopause, menstrual health, and conditions that were historically under-discussed. For example, hormonal testing of Luteinizing hormone (LH) and Follicle-Stimulating Hormone (FSH) levels can play an important role in evaluating and diagnosing <a href="https://pubmed.ncbi.nlm.nih.gov/17476150/">menopause</a> in some patients without a uterus and guide their symptom management. Increased conversation around hormone health may encourage more individuals to seek medical care and advocate for their symptoms.</p>



<p class="wp-block-paragraph">However, the popularity of “hormone balancing” also raises important ethical concerns.</p>



<p class="wp-block-paragraph">When scrolling through social media, people often fail to question who is producing information and what incentives they may have. Content about women’s hormone health is shared by a wide range of individuals, including physicians, wellness influencers, and health coaches. Physicians are obligated to promote evidence-based information and are therefore subject to professional <a href="https://www.cpso.on.ca/Physicians/Policies-Guidance/Policies/Social-Media">regulations</a> regarding public communication. Health coaches and wellness influencers, however, are not held to the same standards of training, <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC12080863/">regulation</a>, or oversight. In an <a href="https://pubmed.ncbi.nlm.nih.gov/39077679/">analysis</a> of oral contraceptive information on TikTok, videos created by healthcare professionals were found to be more accurate, yet they received less engagement than videos made by non-professionals. At the same time, the global wellness industry is valued at approximately <a href="https://globalwellnessinstitute.org/press-room/press-releases/the-global-wellness-economy-hits-a-record-6-8-trillion-and-is-forecast-to-reach-9-8-trillion-by-2029/">$6.8 trillion</a>, and many creators promote supplements, courses, or programs alongside their advice.</p>



<p class="wp-block-paragraph">This introduces potential conflicts of interest that are not always clearly disclosed. For example, <a href="https://www.fda.gov/consumers/consumer-updates/fda-101-dietary-supplements">dietary supplements</a> are not subject to the same level of regulatory scrutiny as prescription medications in the United States and Canada. They are not required to demonstrate effectiveness before being marketed, and safety monitoring is more limited. As a result, consumers may be exposed to products that are ineffective, interact with medications, or cause unintended side effects. At the same time, because prescription medications come with clear warnings and side effect lists, they may be perceived as more dangerous than “natural” alternatives, even when they are well studied and safe when used appropriately.</p>



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



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



<p class="wp-block-paragraph">So how should we respond? From an ethical perspective, responsibility exists across multiple groups.</p>



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



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



<p class="wp-block-paragraph"><em>Eliana Kagal, BMSc is an MD Candidate at the University of Toronto Faculty of Medicine</em></p>



<p class="wp-block-paragraph"><em>Elisheva Nemetz, MBE, MD, Harvard Medical School</em></p>



<p class="wp-block-paragraph"></p>
<p>The post <a href="https://bioethicstoday.org/blog/when-social-media-becomes-your-doctor-ethical-concerns-in-womens-health/">When Social Media Becomes Your Doctor: Ethical Concerns in Women’s Health</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>The Enhanced Games Might Be Dangerous, But That’s What Spectators Want</title>
				<link>https://bioethicstoday.org/blog/the-enhanced-games-might-be-dangerous-but-thats-what-spectators-want/</link>
				<pubDate>Thu, 21 May 2026 08:54:24 +0000</pubDate>

										<category><![CDATA[Drugs]]></category>
												<category><![CDATA[Sports Ethics]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=135840</guid>
				<description><![CDATA[<p>The viewership of traditional athletics has always been dwarfed by MMA, boxing, and football. The Enhanced Games, commencing this week, might change that. The organizers have recruited an impressive cohort of ex-Olympians to participate in the first event to openly permit performance-enhancing drugs. Despite all the moral panic it has generated, the Enhanced Games introduce [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/the-enhanced-games-might-be-dangerous-but-thats-what-spectators-want/">The Enhanced Games Might Be Dangerous, But That’s What Spectators Want</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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<h2 class="wp-block-heading"></h2>



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



<p class="wp-block-paragraph">Despite all the moral panic it has generated, the Enhanced Games introduce <a href="https://doi.org/10.1080/17511321.2026.2632893">nothing genuinely new to sport</a>. It merely makes explicit what has long been implicit: that we tolerate, and even celebrate, extraordinary physical risk when the entertainment is compelling enough.</p>



<p class="wp-block-paragraph">The objection from sporting bodies has been swift and categorical. World Athletics president <a href="https://www.skynews.com.au/breaking-news/world-athletics-president-sebastian-coe-slams-drugfuelled-olympics-alternative/news-story/119655f42e8bc07ff229779dc1622a8e">Sebastian Coe</a> called the concept “bollocks,” whilst WADA president <a href="https://www.theguardian.com/sport/2025/oct/30/enhanced-games-are-dangerous-and-must-be-stopped-says-wada-head">Witold Bańka</a> dismissed it as “dangerous and irresponsible.” These responses treat the Enhanced Games as an unprecedented threat to sporting integrity. However, this framing obscures a more uncomfortable truth about what we already accept in the name of sporting entertainment.</p>



<p class="wp-block-paragraph">Consider boxing, a sport we&#8217;ve sanctioned for over a century. Research indicates that approximately <a href="https://pubmed.ncbi.nlm.nih.gov/10946737/">20% of professional boxers</a> develop a progressive brain disease called chronic traumatic encephalopathy, and the American Association of Neurological Surgeons estimates that 90% of boxers will sustain a brain injury during their careers. Boxers live approximately <a href="https://www.comparethemarket.com.au/health-insurance/features/life-expectancy-of-athletes/">five years less</a> than the general population, with some studies showing even more dramatic reductions in life expectancy.</p>



<p class="wp-block-paragraph">This isn’t news: we’ve known it for decades. Yet we continue to fill arenas to watch boxers trade blows and celebrate knockout victories in full knowledge that each concussive impact accelerates neurological decline. Fighters like Anthony Joshua command seven figure purses of up to <a href="https://punchng.com/mr-money/">$93 million</a> as we queue for tickets to watch him send fighters to an early grave.</p>



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



<p class="wp-block-paragraph">The Enhanced Games simply extends this logic to a new domain. If we accept brain trauma for entertainment, why reject the risks associated with pharmaceutical enhancement? The answer can’t be that drugs are somehow different because doping has never been absent from elite sport. Despite decades of anti-doping efforts, positive tests <a href="https://doi.org/10.1007/s40279-017-0765-4">continue to emerge</a>. Detection consistently lags behind innovation.</p>



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



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



<p class="wp-block-paragraph">Critics worry about normalising harmful practices, but danger and injury are already part and parcel of most sports – even in swimming, <a href="https://doi.org/10.3390/app15031643">53% of athletes</a> get injured each year. The ethical outrage directed at chemical enhancement is inconsistent with silence about these established harms. We’ve long since decided that athlete harm is acceptable when the entertainment justifies it. The Enhanced Games merely forces us to confront that decision directly.</p>



<p class="wp-block-paragraph">The question isn&#8217;t whether the Enhanced Games introduce something morally unprecedented but, rather, whether we&#8217;re honest about the bargain spectators and athletes have always struck: extraordinary performance in exchange for extraordinary risk. We’ve answered that question affirmatively every time we buy a ticket to watch two people fight.</p>



<p class="wp-block-paragraph"><em> Byron Hyde (@bvehyde) is a philosopher of science and public policy at Hokkaido University with honorary appointments at Bangor University and Bristol Medical School.</em> </p>
<p>The post <a href="https://bioethicstoday.org/blog/the-enhanced-games-might-be-dangerous-but-thats-what-spectators-want/">The Enhanced Games Might Be Dangerous, But That’s What Spectators Want</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>When the Military Brain Merges with an AI-Neural Interface</title>
				<link>https://bioethicstoday.org/blog/when-the-military-brain-merges-with-an-ai-neural-interface/</link>
				<pubDate>Tue, 19 May 2026 14:37:04 +0000</pubDate>

										<category><![CDATA[Artificial Intelligence]]></category>
												<category><![CDATA[Neuroethics]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=135710</guid>
				<description><![CDATA[<p>In John Scalzi’s sci-fi novel Old Man’s War, soldiers receive the BrainPal, a neural interface that boosts thinking and connects them to computer assistants. Sounds far-fetched? Perhaps not for long. Military neuroenhancement may be closer than we think. An AI-assisted closed-loop brain-computer interface, or AI-BCI, could be a breakthrough tool to upgrade warfighters. But while [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/when-the-military-brain-merges-with-an-ai-neural-interface/">When the Military Brain Merges with an AI-Neural Interface</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
]]></description>
				<content:encoded><![CDATA[
<h2 class="wp-block-heading"></h2>



<p class="wp-block-paragraph">In John Scalzi’s sci-fi novel <a href="https://www.amazon.com/Old-Mans-War-John-Scalzi/dp/0765348276"><em>Old Man’s War</em></a>, soldiers receive the BrainPal, a neural interface that boosts thinking and connects them to computer assistants. Sounds far-fetched? Perhaps not for long.</p>



<p class="wp-block-paragraph"><a href="https://www.sto.nato.int/document/neuroenhancement-in-military-personnel-conceptual-and-methodological-promises-and-challenges-2/">Military neuroenhancement</a> may be closer than we think. An <a href="https://doi.org/10.1038/s41551-021-00804-y">AI-assisted closed-loop brain-computer interface</a>, or AI-BCI, could be a breakthrough tool to upgrade warfighters. But while the technology may offer real benefits, it also raises major neuroethical concerns: it may weaken users’ autonomy and shift human reasoning toward algorithmic logic.</p>



<p class="wp-block-paragraph"><strong>AI-BCIs: From Therapy to Enhancement</strong></p>



<p class="wp-block-paragraph">Implantable AI-BCIs are used <a href="https://www.frontiersin.org/journals/human-neuroscience/articles/10.3389/fnhum.2023.1085173/full">therapeutically</a> for epilepsy, Parkinson’s disease, and treatment-resistant depression. Yet in healthy users, similar non-invasive systems could enhance attention or reduce fatigue and stress.</p>



<p class="wp-block-paragraph">Think of an AI-BCI as a smart fitness tracker and pacemaker in one: it monitors and stimulates neural activity, adjusting mental states. The device records brain signals, uses AI to detect, for example, cognitive overload or anxiety, and stimulates the brain to correct its activity. It resembles “<a href="https://singularityhub.com/2021/06/29/a-new-brain-implant-automatically-detects-and-kills-pain-in-real-time/">a tag-team of spy and sleeper agent.</a>” Once the “spying” unit detects an anomaly, it “wakes up” the stimulation module.</p>



<p class="wp-block-paragraph">One psychiatrist compared an AI-BCI to an electric bicycle: “<a href="https://med.umn.edu/news/researchers-boost-human-mental-function-brain-stimulation">When someone’s pedaling but having difficulty, the bike senses it and augments it. We’ve made the equivalent of that for human mental function.</a>” While compelling, the analogy is imperfect – unlike an e-bike, an interface operates without the user’s full awareness of when and how it modulates their brain activity. And unlike caffeine or stimulant drugs, whose effects are usually consciously felt, it works below that level.&nbsp;</p>



<p class="wp-block-paragraph"><strong>The Military’s Interest in Neurotech</strong></p>



<p class="wp-block-paragraph">U.S. military researchers have long explored brain technologies, and the Defense Advanced Research Projects Agency has supported projects showing that AI-BCIs may help <a href="https://www.darpa.mil/research/programs/systems-based-neurotechnology-for-emerging-therapies">regulate mental health</a> and <a href="https://www.darpa.mil/research/programs/restoring-active-memory">enhance memory</a>. Noninvasive solutions are also emerging rapidly, including <a href="https://www.forbes.com/sites/robtoews/2025/12/07/the-next-frontier-for-ai-is-the-human-brain/">ultrasound</a> and <a href="https://www.darpa.mil/research/programs/next-generation-nonsurgical-neurotechnology">other forms</a> of brain monitoring and stimulation.</p>



<p class="wp-block-paragraph">Commercial start-ups are advancing <a href="https://www.engadget.com/wearables/the-ces-companies-hoping-your-brain-is-the-next-big-thing-in-computing-175048601.html">wearable neurodevices</a>, such as headbands and headphones, for wellness, entertainment, and productivity. For example, the <a href="https://somneesleep.com/">Somnee</a> headband tracks and modulates brainwaves to improve sleep quality.</p>



<p class="wp-block-paragraph">The military is also moving toward monitoring soldiers’ brains – a prerequisite for neuroenhancement. For instance, the U.S. Air Force partnered with <a href="https://www.neurable.com/">Neurable</a> to <a href="https://www.militarytimes.com/news/your-military/2026/01/22/ai-powered-military-neurotech-mind-enhancement-or-control/">track cognitive fitness and attention</a> with EEG headphones, while Aptima is developing an AI-enabled <a href="https://www.defenseadvancement.com/news/helmet-based-pilot-monitoring-for-real-time-health-tracking/">helmet system</a> to monitor helicopter pilots’ cognitive states. The next stage will integrate these neural scanners with <a href="https://warontherocks.com/cogs-of-war/all-too-quiet-on-the-western-neuroenhancement-front/">brain-zapping capabilities</a>.</p>



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



<p class="wp-block-paragraph"><strong>Autonomy Under the Algorithm&nbsp;</strong></p>



<p class="wp-block-paragraph">The first issue is human autonomy, and three approaches are useful here: traditional, experiential, and relational.</p>



<p class="wp-block-paragraph">In <a href="https://www.amazon.com/Principles-Biomedical-Ethics-Tom-Beauchamp/dp/0197832636/ref=sr_1_1?crid=LPE9RN9HCC6T&amp;dib=eyJ2IjoiMSJ9.RoS33yvqz_sB8DLUAiPPGkqmc4hYkkRnZpwgPyzIe-YLiLTjaeBgd3YYdzWPuvEM3MMtffGN1ZMBhZqyyc2HI3_x23HJfPgt3EeSDbGltJbiQLXITZM_le0SbpEZUs4FLUoYDE2wEuxtHXCgEo2C6XmrOUALcV9CNp8Zm8Uy2hNlwPFEig4gbbS0qd2CgGLVP2XzO5BwdpBy19dWK3oppob_zwFJpCUD7uQaFKCV_gg.RUMe8o_ZJRy6HGvZPZH68dISAQTrngVf0n9dFc1fXAc&amp;dib_tag=se&amp;keywords=principles+of+biomedical+ethics&amp;qid=1778706305&amp;s=books&amp;sprefix=pinciples+of+biomedical+ethics+%2Cstripbooks%2C124&amp;sr=1-1">the traditional view</a> of autonomy, individuals are autonomous when they act intentionally, understand what they are doing, and remain free from undue control. AI-BCIs may not directly threaten intentionality, since they cannot implant motives or goals. But they could challenge<strong> </strong>users’ understanding<strong> </strong>and<strong> </strong>meaningful control over their choices and conduct. Because closed-loop interfaces operate below consciousness, soldiers may not fully understand why they decide or act as they do. Consider autocorrect. It fixes typos but sometimes changes the intended meaning before we notice. AI-BCIs could create a cognitive autocorrect mode. Warfighters may not know what the algorithm inferred from their brain data or how it adjusted their mind. Even with informed consent, a gap remains: you can agree to use the device, but can you truly understand its moment-to-moment influence on your psyche? And there is the problem of non-control. AI-BCIs do not just support cognition; they can filter, prioritize, and narrow options. Soldiers may still feel in control, even though the BCI has quietly structured their mental activity.</p>



<p class="wp-block-paragraph"><a href="https://hal.science/ijn_00352565v1/file/Pacherie_sense_of_control_Psyche.pdf">The experiential framework</a> of autonomy emphasizes the lived sense of agency: the feeling that I am the one who initiates, controls, and owns my actions. But when decisions are co-managed by an adaptive system, users may feel alienated from their behavior. Was that truly my judgment, my decision – or was I pushed by the system? Some patients undergoing deep-brain stimulation have <a href="https://doi.org/10.1007/s12152-011-9137-1">reported feeling</a> “like a machine” or an “electric doll,” detached from themselves, as if their actions were no longer truly their own. BCI-enhanced soldiers could experience similar estrangement.</p>



<p class="wp-block-paragraph"><a href="https://link.springer.com/article/10.1023/B:PHIL.0000014532.56866.5c">The relational approach</a> views autonomy as embedded in interactions with others and our social environment. Yet in the age of AI, “others” are not only humans; they are also smart machines. If a soldier’s cognition is partly co-produced by an AI-BCI, agency and responsibility become harder to locate. If the system misreads neural signals and contributes to wrongful action, who is accountable? The soldier? The commander? The manufacturer? The AI? As cognition is shared between biological and digital intelligence, accountability may diffuse.</p>



<p class="wp-block-paragraph">Ultimately, autonomy may need to be redefined as a hybrid human-machine concept.</p>



<p class="wp-block-paragraph"><strong>Human Reasoning</strong></p>



<p class="wp-block-paragraph">An even deeper concern is that AI-BCIs may alter the nature of human reasoning. Our thinking cannot be reduced to statistical optimization. We do not reason solely through pattern recognition or prediction. Human judgment is contextual, embodied, emotional, and often <a href="https://www.amazon.com/Myth-Artificial-Intelligence-Computers-Think/dp/0674983513">abductive</a>: we move from fragments of reality to hypotheses and interpretations. <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC8108480/">AI operates differently</a>. It is inductive and predictive. It identifies patterns in past data to optimize future outputs. AI models prioritize what is statistically likely, not necessarily what is contextually wise or morally right.</p>



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



<p class="wp-block-paragraph">Recent research illuminates this risk. <a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=6097646">Steven Shaw and Gideon Nave</a> build upon <a href="https://www.amazon.com/Thinking-Fast-Slow-Daniel-Kahneman/dp/0374533555">the dual-system theory of cognition</a>, in which System 1 represents fast, intuitive thinking, while System 2 involves slow, deliberative reasoning. They introduce System 3 – external artificial cognition. When humans interact with AI, they often experience “cognitive surrender.” <a href="https://www.forbes.com/sites/brycehoffman/2024/03/10/automation-bias-what-it-is-and-how-to-overcome-it/">Automation bias</a>, our tendency to over-rely on technology, often leads people to adopt AI outputs without critical evaluation. In their study, participants followed incorrect AI advice nearly 80 percent of the time. Thus, System 3 may override both intuition and deliberation. And when integrated with the brain through AI-BCI, it may no longer remain merely external. System 3 could become part of cognition itself, subtly steering human reasoning while feeling like one’s own judgment.</p>



<p class="wp-block-paragraph"><strong>Who Is Really in Command?</strong></p>



<p class="wp-block-paragraph">AI-enabled interfaces may offer tangible military benefits. But neuroethics requires us to ask a deeper question: What kinds of subjects do they produce?</p>



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



<p class="wp-block-paragraph"><em>Lukasz Kamienski, PhD, (@LukaszKamienski</em>)<em> is a Professor of Security Studies at Jagiellonian University in Krakow, Poland, and a Fulbright Visiting Scholar at the Center for Ethics and the Rule of Law at the University of Pennsylvania.</em></p>



<p class="wp-block-paragraph"></p>
<p>The post <a href="https://bioethicstoday.org/blog/when-the-military-brain-merges-with-an-ai-neural-interface/">When the Military Brain Merges with an AI-Neural Interface</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>Ozempic, Coerced Weight-Loss, and Threats to Rationality</title>
				<link>https://bioethicstoday.org/blog/ozempic-coerced-weight-loss-and-threats-to-rationality/</link>
				<pubDate>Fri, 08 May 2026 18:06:19 +0000</pubDate>

										<category><![CDATA[Drugs]]></category>
												<category><![CDATA[Health Care]]></category>
												<category><![CDATA[Justice]]></category>
												<category><![CDATA[Philosophy &amp; Ethics]]></category>
												<category><![CDATA[Public Health]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=135543</guid>
				<description><![CDATA[<p>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 [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/ozempic-coerced-weight-loss-and-threats-to-rationality/">Ozempic, Coerced Weight-Loss, and Threats to Rationality</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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<h2 class="wp-block-heading"></h2>



<p class="wp-block-paragraph">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 <a href="https://pubmed.ncbi.nlm.nih.gov/39043396/">diabetes</a>. 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, <em>The Lancet</em> 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.</p>



<p class="wp-block-paragraph">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 <a href="https://www.nature.com/articles/nm0612-843">other weight-loss drugs like fen-phen</a> in the <a href="https://podcasts.apple.com/us/podcast/ozempic/id1535408667?i=1000630805156">past</a>.</p>



<p class="wp-block-paragraph">Losing weight and meeting lower BMI cut-offs are already <a href="https://www.ncbi.nlm.nih.gov/books/NBK602667/">requirements to be eligible for various surgeries</a> 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) <a href="https://highline.huffingtonpost.com/articles/en/everything-you-know-about-obesity-is-wrong/">most diets don’t work</a>, 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 <a href="https://theconversation.com/obese-does-not-necessarily-mean-unhealthy-72718">that health is necessarily and directly correlated with weight</a>.</p>



<p class="wp-block-paragraph">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 <a href="https://bioethicstoday.org/blog/prescribing-ozempic-and-an-obligation-to-lose-weight/">blog</a>, “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.”</p>



<p class="wp-block-paragraph">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 <a href="https://pubmed.ncbi.nlm.nih.gov/20075322/">other effects</a>. 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.</p>



<p class="wp-block-paragraph">In short, take a GLP-1, or else…</p>



<p class="wp-block-paragraph">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 <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC4381543/">spend less time </a>and <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC3694993/">build less rapport</a> with fat patients; fat patients are generally <a href="https://med.stanford.edu/news/insights/2023/09/what-physicians-get-wrong-about-the-risks-of-being-overweight.html">presumed to be unhealthy</a> <a href="https://pubmed.ncbi.nlm.nih.gov/33095479/">on account of their weight</a> (<a href="https://www.scientificamerican.com/article/people-who-are-fat-and-healthy-may-hold-keys-to-understanding-obesity/">even when they are not</a>) and as such, experience <a href="https://global.oup.com/academic/product/microaggressions-in-medicine-9780197652497">microaggressions</a> and <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC6563065/">macroaggression</a>s from healthcare professionals, resulting in <a href="https://www.sciencedirect.com/science/article/abs/pii/S0738399114002742">fractured trust</a>. For many healthcare professionals, <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC7920326/">all negative health issues experienced by fat patients tend to be attributed to their weight</a> (even when they are unrelated). Additionally, many essential medical devices and equipment (<a href="https://www.ama-assn.org/public-health/prevention-wellness/millions-hypertension-home-bp-cuffs-aren-t-good-fit">like blood pressure cuffs</a>, <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC6223172/">CT scanners</a>, and even <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC9756509/">hospital beds and hospital gowns) do not fit them</a>. Overall, <a href="https://www.nytimes.com/2016/09/26/health/obese-patients-health-care.html">fat patients receive worse care</a> 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 <a href="https://academic.oup.com/book/32817">epistemic harm</a> (viz., harm suffered as a knower) that fat patients experience in the wake of the rise of GLP-1 drugs.</p>



<p class="wp-block-paragraph">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. <span style="margin: 0px; padding: 0px;">Fat patients who are prescribed GLP-1s to lose weight for whatever reason and who decide <em>not</em> 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).</span> 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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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 <em>non-medical</em> things. If fatness is an indication that a person is <em>generally</em> 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 <a href="https://pubmed.ncbi.nlm.nih.gov/33095479/">injustice</a>.</p>



<p class="wp-block-paragraph"><i>Lauren Freeman, PhD is a Professor of Philos</i><em>ophy at the University of Louisville</em></p>



<p class="wp-block-paragraph"><em>Barrett Emerick, PhD is a Professor of Philosophy at St. Mary’s College of Maryland</em></p>
<p>The post <a href="https://bioethicstoday.org/blog/ozempic-coerced-weight-loss-and-threats-to-rationality/">Ozempic, Coerced Weight-Loss, and Threats to Rationality</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>Whose Values Define Value? Procedural Justice and the Personal Utility of Clinical Genomic Testing</title>
				<link>https://bioethicstoday.org/blog/when-ice-brings-you-the-patient-hospitals-must-stop-victimizing-forensic-patients-clone/</link>
				<pubDate>Thu, 07 May 2026 17:09:57 +0000</pubDate>

										<category><![CDATA[Editorial-AJOB]]></category>
												<category><![CDATA[Ethics]]></category>
												<category><![CDATA[Genetics]]></category>
												<category><![CDATA[Health Regulation &amp; Law]]></category>
												<category><![CDATA[Policy]]></category>
												<category><![CDATA[Public Health]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=135597</guid>
				<description><![CDATA[<p>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 [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/when-ice-brings-you-the-patient-hospitals-must-stop-victimizing-forensic-patients-clone/">Whose Values Define Value? Procedural Justice and the Personal Utility of Clinical Genomic Testing</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<content:encoded><![CDATA[
<p class="wp-block-paragraph"></p>



<p class="wp-block-paragraph"><em><strong><a href="https://www.tandfonline.com/toc/uajb20/current" type="link" id="https://www.tandfonline.com/toc/uajb20/current">This editorial appears in the May Issue of the American Journal of Bioethics</a></strong></em></p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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 <em>what</em> to decide, bioethicists should focus first on identifying ethical principles for guiding <em>how</em> to decide, as well as processes for implementing these principles in practice.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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.</p>



<h2 class="wp-block-heading">Disclosure statement</h2>



<p class="wp-block-paragraph">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.</p>



<h2 class="wp-block-heading">Funding</h2>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph"><em>Meghan C. Halley, PhD</em></p>



<p class="wp-block-paragraph"></p>
<p>The post <a href="https://bioethicstoday.org/blog/when-ice-brings-you-the-patient-hospitals-must-stop-victimizing-forensic-patients-clone/">Whose Values Define Value? Procedural Justice and the Personal Utility of Clinical Genomic Testing</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>Caring for Autistic Adolescents: A Call for Improved Education of Clinicians and Caregivers</title>
				<link>https://bioethicstoday.org/blog/when-ice-brings-you-the-patient-hospitals-must-stop-victimizing-forensic-patients-clone-clone/</link>
				<pubDate>Thu, 07 May 2026 17:07:57 +0000</pubDate>

										<category><![CDATA[Clinical Ethics]]></category>
												<category><![CDATA[Disability Studies]]></category>
												<category><![CDATA[Editorial-AJOB]]></category>
												<category><![CDATA[Ethics]]></category>
												<category><![CDATA[Public Health]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=135601</guid>
				<description><![CDATA[<p>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 [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/when-ice-brings-you-the-patient-hospitals-must-stop-victimizing-forensic-patients-clone-clone/">Caring for Autistic Adolescents: A Call for Improved Education of Clinicians and Caregivers</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
]]></description>
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<p class="wp-block-paragraph"><em><strong><a href="https://www.tandfonline.com/toc/uajb20/current" type="link" id="https://www.tandfonline.com/toc/uajb20/current">This editorial appears in the May Issue of the American Journal of Bioethics</a></strong></em></p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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.”</p>



<p class="wp-block-paragraph">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 <em>JAMA Pediatrics</em> found, however, that “Treatment use among adolescents … was significantly lower in states mandating caregiver consent”.</p>



<p class="wp-block-paragraph">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.”</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph"><em>Nanette Elster, JD, MPH, Nathan Derhammer, MD, and Kayhan Parsi, JD, PhD, HEC-C</em></p>



<p class="wp-block-paragraph"></p>
<p>The post <a href="https://bioethicstoday.org/blog/when-ice-brings-you-the-patient-hospitals-must-stop-victimizing-forensic-patients-clone-clone/">Caring for Autistic Adolescents: A Call for Improved Education of Clinicians and Caregivers</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>Eviscerating the Voting Rights Act, Black Bioethics, and the Ancestors</title>
				<link>https://bioethicstoday.org/blog/eviscerating-the-voting-rights-act-black-bioethics-and-the-ancestors/</link>
				<pubDate>Tue, 05 May 2026 20:23:01 +0000</pubDate>

										<category><![CDATA[Black Bioethics]]></category>
												<category><![CDATA[Cultural]]></category>
												<category><![CDATA[Politics]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=135560</guid>
				<description><![CDATA[<p>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’ [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/eviscerating-the-voting-rights-act-black-bioethics-and-the-ancestors/">Eviscerating the Voting Rights Act, Black Bioethics, and the Ancestors</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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<p class="wp-block-paragraph">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. <a href="https://apnews.com/article/supreme-court-voting-rights-act-louisiana-alabama-4e3225083caccda5ec73a98533a79add">Supreme Court</a> 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&#8217;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.</p>



<p class="wp-block-paragraph">This is not what they fought for.</p>



<p class="wp-block-paragraph">After 1965’s <a href="https://apnews.com/article/alabama-selma-bloody-sunday-anniversary-fced6bc2794576b8ed20b3ef1223155e">“Bloody Sunday”</a> 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.</p>



<p class="wp-block-paragraph">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. <a href="https://global.oup.com/academic/product/black-health-9780197620274?cc=us&amp;lang=en&amp;">Racism in the form of race-related stress and trauma</a>, 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.</p>



<p class="wp-block-paragraph">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. </p>



<p class="wp-block-paragraph"><a href="https://bioethicstoday.org/blog/black-bioethics-and-how-the-failures-of-the-profession-paved-the-way-for-its-existence/">Black Bioethics </a>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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph"></p>



<p class="wp-block-paragraph">The views expressed here do not represent the views of any organizations affiliated with the author.</p>



<p class="wp-block-paragraph"><em>Keisha Ray, PhD</em></p>
<p>The post <a href="https://bioethicstoday.org/blog/eviscerating-the-voting-rights-act-black-bioethics-and-the-ancestors/">Eviscerating the Voting Rights Act, Black Bioethics, and the Ancestors</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>Evaluating the Price of Oregon’s Psilocybin Services: Finding the Right Comparison</title>
				<link>https://bioethicstoday.org/blog/evaluating-the-price-of-oregons-psilocybin-services-finding-the-right-comparison/</link>
				<pubDate>Fri, 24 Apr 2026 15:16:56 +0000</pubDate>

										<category><![CDATA[Policy]]></category>
												<category><![CDATA[Psychedelics]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=135317</guid>
				<description><![CDATA[<p>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 [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/evaluating-the-price-of-oregons-psilocybin-services-finding-the-right-comparison/">Evaluating the Price of Oregon’s Psilocybin Services: Finding the Right Comparison</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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<p class="wp-block-paragraph">Oregon’s psilocybin services are often described as quite expensive in both<a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.nytimes.com%2F2026%2F01%2F13%2Fhealth%2Fshrooms-lead-the-pack-in-psychedelic-medicine-but-rollout-is-bumpy.html&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C4466c9796809413be7ce08dea15971df%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639125603148679127%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=mLaAQIMx8CM%2FC7wmxTbMnhSU729aH9s09SRRKHqQz4g%3D&amp;reserved=0"> media coverage</a><a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.nytimes.com%2F2026%2F01%2F13%2Fhealth%2Fshrooms-lead-the-pack-in-psychedelic-medicine-but-rollout-is-bumpy.html&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C4466c9796809413be7ce08dea15971df%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639125603148726694%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=fhVy8g%2F4Hy16CWO%2BnOjLR0hL0MTDK4mVAFG%2B1QjfYE8%3D&amp;reserved=0"> </a>and <a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.healthaffairs.org%2Fcontent%2Fforefront%2Ftwelve-thousand-dollar-question-picks-up-tab-psychedelics&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C4466c9796809413be7ce08dea15971df%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639125603148773376%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=40fJ9C%2B1cfIo6RO5U79u5Cuhg1AdZOpggGmUSARZZVA%3D&amp;reserved=0">academic</a> 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.</p>



<p class="wp-block-paragraph">In 2020, Oregon was the <a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fnewprairiepress.org%2Fcgi%2Fviewcontent.cgi%3Farticle%3D1377%26context%3Dhbr&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C4466c9796809413be7ce08dea15971df%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639125603148816702%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=Zsat8pJe%2FzWKezAj%2B4gt1V4wmhPmeEy%2FJVdyRHCVmiI%3D&amp;reserved=0">first state in the U.S.</a> 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.</p>



<p class="wp-block-paragraph">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 <a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.nytimes.com%2F2026%2F01%2F13%2Fhealth%2Fshrooms-lead-the-pack-in-psychedelic-medicine-but-rollout-is-bumpy.html&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C4466c9796809413be7ce08dea15971df%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639125603148855246%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=Kbc1cdF8ubbG6P7CQBD8063cx8Nh%2BVHmeQHGjemKnf0%3D&amp;reserved=0">$850 and $3,000</a> (which usually includes a preparation and follow-up session).</p>



<p class="wp-block-paragraph">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 (<a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fjournals.sagepub.com%2Fdoi%2Fpdf%2F10.1177%2F0269881108099672&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C4466c9796809413be7ce08dea15971df%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639125603148892830%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=TnXYbQK3DApg9hY9sqPqhT1Jeb9J5BQ%2F2V%2F0WQhHoR8%3D&amp;reserved=0">David Nutt</a> 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. </p>



<p class="wp-block-paragraph">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. </p>



<p class="wp-block-paragraph">Despite Oregon’s policy being <a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.oregon.gov%2Foha%2Fph%2Fpreventionwellness%2Fpages%2Fpsilocybin-data-dashboard.aspx&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C4466c9796809413be7ce08dea15971df%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639125603149056150%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=VylU55J%2FnSW0KOWc5UHL6%2BVdzrTGREdS3NrwotfojGc%3D&amp;reserved=0">non-medical purposes</a>, 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. </p>



<p class="wp-block-paragraph">For example, we could compare psilocybin service centers to pharmacotherapy for depression or anxiety, which can cost around <a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.goodrx.com%2Fsertraline%2Fsertraline-cost-without-insurance%3Fsrsltid%3DAfmBOoreI5i2x7_Z7Q0FbH6_pDCoQ_NY1-zPvgRWQkk_G-YbcNbUQvMO&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C4466c9796809413be7ce08dea15971df%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639125603148940670%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=a2SxEJz%2FjP0bcKLqsAJ%2FRnJ4mZ%2By0fSJs%2FMQA%2F9Peo4%3D&amp;reserved=0">$30 per month</a><a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.goodrx.com%2Fsertraline%2Fsertraline-cost-without-insurance%3Fsrsltid%3DAfmBOoreI5i2x7_Z7Q0FbH6_pDCoQ_NY1-zPvgRWQkk_G-YbcNbUQvMO&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C4466c9796809413be7ce08dea15971df%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639125603148979852%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=tqX%2By7ht7kzfk7qS5OzvIiWrLkxKlX45Y1txUUgXtZ8%3D&amp;reserved=0"> </a>for a generic medication like sertraline without insurance, in addition to <a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.goodrx.com%2Fhealth-topic%2Fneurological%2Fpsychiatrist-cost-without-insurance%3Fsrsltid%3DAfmBOoqur6iTyQFpe5-LS0OEcmrLGL3zsvLt85QrcFa57iCam8Fffc_P&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C4466c9796809413be7ce08dea15971df%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639125603149017436%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=BYoM1VlWsT2iu%2Fo9GmgT%2Ffr9kRISTjl9XH1TdDkMXMQ%3D&amp;reserved=0">~$250</a> 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  <a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.goodrx.com%2Fhealth-topic%2Fneurological%2Fpsychiatrist-cost-without-insurance%3Fsrsltid%3DAfmBOoqur6iTyQFpe5-LS0OEcmrLGL3zsvLt85QrcFa57iCam8Fffc_P&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C3d1b62ae18ba4ab8c17908dea20a15e9%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639126361379267176%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=JuGsCL8MsNq1qAQFWp5mLmZr2b2ZLJR3sm9vqVZRK3A%3D&amp;reserved=0">$139 per hour</a> (without insurance). Assuming a total duration of <a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.klcc.org%2Fhealth-medicine%2F2025-07-02%2Foregon-psilocybin-therapy-clients-tend-to-be-wealthier-new-data-suggests&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C3d1b62ae18ba4ab8c17908dea20a15e9%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639126361379325725%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=%2FodwWP64qMmnWfthZL3thrslC3oE4hFrb4th8FGwyl0%3D&amp;reserved=0">around 15 hours</a>, 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. </p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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 <a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fsecure.sos.state.or.us%2Foard%2FdisplayDivisionRules.action%3FselectedDivision%3D7102&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C3d1b62ae18ba4ab8c17908dea20a15e9%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639126361379374389%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=67qzTabTxCNwe0qqkkgHePUqQZfwbc8AT6aSstgxF10%3D&amp;reserved=0">not being a medical treatment.</a> 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 (<a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.alpineascents.com%2Fclimbs%2Fmount-rainier-climb-muir%2F&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C3d1b62ae18ba4ab8c17908dea20a15e9%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639126361379436271%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=hNVMp80zdoZKmjSPrc9PqcrvIIV2zxyVypCG%2FS5Q4Q8%3D&amp;reserved=0">$3475</a> or ~$1158 per day), or a full day diving trip with a private divemaster ($718 from <a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fstuartcove.com%2Fscuba-diving%2Fdive-trips%2F&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C3d1b62ae18ba4ab8c17908dea20a15e9%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639126361379490863%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=zSPyKUH2no7AgqHMxBGtDQ50q18Y%2FemfMhTpPN2R5QE%3D&amp;reserved=0">one company</a>). 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.</p>



<p class="wp-block-paragraph">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).</p>



<p class="wp-block-paragraph">In 2021, the average massage cost about $76 per hour, while massages at hotels and resorts averaged about <a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fmassagetherapy.nv.gov%2FuploadedFiles%2Fmassagetherapynvgov%2Fcontent%2FAbout%2FBoard_Meetings%2F2021%2FItem15b2021MassageProfessionResearchReport.pdf&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C4466c9796809413be7ce08dea15971df%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639125603149164794%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=cxynhLUXTHjAAcQtPFLHxkCkfKAnYj5cDCPGfTZ%2FRAc%3D&amp;reserved=0">$123 per hour.</a> 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.</p>



<p class="wp-block-paragraph">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 <a href="https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Foutlawreport.com%2Fd-c-board-affirms-closure-of-temple-of-golden-teacher-over-psilocybin-sales%2F&amp;data=05%7C02%7CKeisha.S.Ray%40uth.tmc.edu%7C3d1b62ae18ba4ab8c17908dea20a15e9%7C7b326d2441ad4f57bc6089e4a6ac721b%7C0%7C0%7C639126361379544347%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=bnd7YF5%2BSgqYOc3cpOrCvi1nlyjlr0jEuEGverAG0yI%3D&amp;reserved=0">$40</a>. 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”.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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?</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph"></p>



<p class="wp-block-paragraph"><em>Katherine Cheung (@Katherine_Chg) is a PhD student in Bioethics and Health Policy at Johns Hopkins University <br>Caleigh Propes (@CaleighPropes) is a PhD Candidate in Bioethics and Health Policy at Johns Hopkins University <br>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</em></p>



<p class="wp-block-paragraph"></p>
<p>The post <a href="https://bioethicstoday.org/blog/evaluating-the-price-of-oregons-psilocybin-services-finding-the-right-comparison/">Evaluating the Price of Oregon’s Psilocybin Services: Finding the Right Comparison</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>Can Researchers Experience Moral Distress?</title>
				<link>https://bioethicstoday.org/blog/can-researchers-experience-moral-distress/</link>
				<pubDate>Mon, 20 Apr 2026 19:12:05 +0000</pubDate>

										<category><![CDATA[Policy]]></category>
												<category><![CDATA[Research Ethics]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=135271</guid>
				<description><![CDATA[<p>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 [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/can-researchers-experience-moral-distress/">Can Researchers Experience Moral Distress?</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
]]></description>
				<content:encoded><![CDATA[
<p class="wp-block-paragraph"></p>



<p class="wp-block-paragraph">In the context of healthcare, <a href="https://journals.sagepub.com/doi/abs/10.1177/0969733017724354">moral distress</a> 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.</p>



<p class="wp-block-paragraph">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 <a href="https://www.nature.com/articles/s41591-026-04227-7">community members</a>. This situation left them unsure of how to act most ethically when they could <a href="https://www.nature.com/articles/d41586-025-01721-9">no longer continue a research partnership</a>. NIH acknowledged the ethical challenges posed by funding terminations, but they offered <a href="https://irbo.nih.gov/documents/631/2026_02_19_Study_closures_presentation.pdf">minimal guidance</a> on how researchers should proceed. Without a clear pathway for fulfilling their ethical duties to participants, researchers are likely to experience significant moral distress.</p>



<p class="wp-block-paragraph">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 <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC2837458/">community-based participatory research</a>, 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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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. </p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">I know that I am not alone in these <a href="https://www.advocate.com/opinion/lgbtq-research-grant-cut-impact">feelings.</a> 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.</p>



<p class="wp-block-paragraph"><em>Laura Stamm, PhD is an assistant professor of Medicine and Health Humanities and Bioethics at the University of Rochester School of Medicine and Dentistry</em></p>
<p>The post <a href="https://bioethicstoday.org/blog/can-researchers-experience-moral-distress/">Can Researchers Experience Moral Distress?</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>How Should Adolescents Be Included in Clinical Psychedelic Research?</title>
				<link>https://bioethicstoday.org/blog/how-should-adolescents-be-included-in-clinical-psychedelic-research/</link>
				<pubDate>Fri, 17 Apr 2026 16:36:28 +0000</pubDate>

										<category><![CDATA[Drugs]]></category>
												<category><![CDATA[Pediatrics]]></category>
												<category><![CDATA[Psychedelics]]></category>
												<category><![CDATA[Psychiatric Ethics]]></category>
												<category><![CDATA[Research Ethics]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=135197</guid>
				<description><![CDATA[<p>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 [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/how-should-adolescents-be-included-in-clinical-psychedelic-research/">How Should Adolescents Be Included in Clinical Psychedelic Research?</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
]]></description>
				<content:encoded><![CDATA[
<h2 class="wp-block-heading"></h2>



<p class="wp-block-paragraph"><em>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&#8217;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&#8217;s capacity, or lack of capacity, to shape the environment in which therapeutic change has to take root.</em></p>



<p class="wp-block-paragraph">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<a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)30385-3/abstract"> </a><a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)30385-3/abstract">network meta-analysis</a> found that only one of fourteen antidepressants had a favourable risk-benefit balance in young people, and that some were associated with<a href="https://jamanetwork.com/journals/jamapsychiatry/fullarticle/209399"> </a><a href="https://jamanetwork.com/journals/jamapsychiatry/fullarticle/209399">increased suicidality</a>.</p>



<p class="wp-block-paragraph">Adolescent mental health is in a <a href="https://www.nature.com/articles/s41398-025-03623-w">worse state now</a> than when SSRIs emerged. Clinicians, parents, and suffering young people are looking for better options &#8211; 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 &#8220;little adults&#8221; is well-worn, but it bears repeating: we need sensitivity to differences not just in their biology, but in their psychology and social context.</p>



<p class="wp-block-paragraph">Getting that sensitivity right requires adolescent-specific evidence that, at present, we simply do not have. Khaleel Rajwani and Brian Earp have argued that <a href="https://bioethicstoday.org/blog/should-adolescents-be-included-in-clinical-psychedelic-research/">this needs to change</a>. 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?</p>



<p class="wp-block-paragraph">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 <em>decision to participate</em> &#8211; whether a young person can meaningfully consent to being enrolled in the first place. As we argue <a href="https://actapsychedelica.journal.fi/article/view/176201/122472">in a newly published paper</a>, there is reason to think that adolescent autonomy is just as ethically salient <em>after</em> the drug has been administered. The reason has to do with how psychedelics seem to work.</p>



<p class="wp-block-paragraph">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<a href="https://doi.org/10.1016/j.neubiorev.2025.106132"> robust evidence</a> 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&#8217;s relationships, daily circumstances, and the quality of support available to them.</p>



<p class="wp-block-paragraph">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<a href="https://doi.org/10.1136/bmj-2024-081723"> </a><a href="https://doi.org/10.1136/bmj-2024-081723">transdiagnostically effective</a>. 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 <a href="https://www.nature.com/articles/s41598-023-41145-x">prolonged difficulties after naturalistic psychedelic use</a>, 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.</p>



<p class="wp-block-paragraph">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&#8217;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.</p>



<p class="wp-block-paragraph">The autonomy of adolescents – or rather, the relative <em>lack</em> of autonomy of adolescents, complicates this process. The developmental trajectory of adolescence is precisely the gradual gaining of influence over one&#8217;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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph"><a href="https://actapsychedelica.journal.fi/article/view/176201/122472">W</a><a href="https://actapsychedelica.journal.fi/article/view/176201/122472">e argue</a> 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. &#8220;Readiness for treatment&#8221; should encompass not only the patient but also the environment they will return to.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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,<a href="https://pubmed.ncbi.nlm.nih.gov/36682069/"> </a><a href="https://pubmed.ncbi.nlm.nih.gov/36682069/">evidence-based family interventions</a> 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.</p>



<p class="wp-block-paragraph">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&#8217; 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.</p>



<p class="wp-block-paragraph">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 <a href="https://pubmed.ncbi.nlm.nih.gov/36314881/">early</a> <a href="https://www.nature.com/articles/s41598-022-18645-3">signals</a> 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.</p>



<p class="has-text-align-center wp-block-paragraph"></p>



<p class="wp-block-paragraph"><em>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</em></p>



<p class="wp-block-paragraph"><em>Bryony Insua-Summerhays, DClinPsych is a Senior Clinical Psychologist in the NHS</em></p>
<p>The post <a href="https://bioethicstoday.org/blog/how-should-adolescents-be-included-in-clinical-psychedelic-research/">How Should Adolescents Be Included in Clinical Psychedelic Research?</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>In Every Country I Practiced, I Was a Doctor — Until America</title>
				<link>https://bioethicstoday.org/blog/in-every-country-i-practiced-i-was-a-doctor-until-america/</link>
				<pubDate>Thu, 16 Apr 2026 01:28:58 +0000</pubDate>

										<category><![CDATA[Global Ethics]]></category>
												<category><![CDATA[Professional Ethics]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=135182</guid>
				<description><![CDATA[<p>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 [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/in-every-country-i-practiced-i-was-a-doctor-until-america/">In Every Country I Practiced, I Was a Doctor — Until America</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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<h2 class="wp-block-heading"></h2>



<p class="wp-block-paragraph"></p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">My odyssey unfolded in northern Pakistan. There, the title &#8220;doctor&#8221; 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 &#8220;provided&#8221; care; we practiced it, and language reflected that truth.</p>



<p class="wp-block-paragraph">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. <a href="https://doi.org/10.1136/fmch-2024-002829">Studies</a> on professional identity formation underscore that such linguistic anchors are central to how clinicians internalize ethical responsibility and meaning in their work.</p>



<p class="wp-block-paragraph">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 <a href="https://doi.org/10.3122/jabfm.2012.04.110267">medicine literature</a> consistently show that patients experience care relationally, not institutionally.</p>



<p class="wp-block-paragraph">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 &#8220;patient-facing&#8221; 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 <a href="https://doi.org/10.1001/jamanetworkopen.2019.1083">broader cultural move</a> 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 <a href="https://doi.org/10.1111/acem.12441">clarity of roles</a>—not their erasure—improves safety and performance. Ambiguity diffuses responsibility and increases cognitive error.</p>



<p class="wp-block-paragraph">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 &#8220;provider&#8221; commodifies the doctor-patient relationship. When I sit with a patient receiving a terminal diagnosis, I am not &#8220;providing a service.&#8221; 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&#8217;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.</p>



<p class="wp-block-paragraph">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 &#8220;providers,&#8221; it becomes easier for a system to treat us as data points—imposing quotas and metrics that value <a href="https://doi.org/10.1370/afm.1823">volume over judgment, presence, and the human soul</a>. 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 <a href="https://doi.org/10.1097/AOG.0000000000006099">trust</a> is the only foundation upon which healing can happen.</p>



<p class="wp-block-paragraph">Change is possible. The American Medical Association has already pushed to abandon &#8220;provider&#8221; in favor of &#8220;physician.&#8221; 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.</p>



<p class="wp-block-paragraph">I am a doctor. It’s time we reclaimed the title—and the soul of the profession.</p>



<p class="wp-block-paragraph"><em>Kalimullah Jan, MD, is an Instructor in the department of Neurosurgery (Neuroendovascular) at the Medical College of Wisconsin, Milwaukee.</em></p>
<p>The post <a href="https://bioethicstoday.org/blog/in-every-country-i-practiced-i-was-a-doctor-until-america/">In Every Country I Practiced, I Was a Doctor — Until America</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>TikTok Ethics: Social Media’s Influence on Moral Values</title>
				<link>https://bioethicstoday.org/blog/tiktok-ethics-social-medias-influence-on-moral-values/</link>
				<pubDate>Mon, 13 Apr 2026 17:46:50 +0000</pubDate>

										<category><![CDATA[Cultural]]></category>
												<category><![CDATA[Disability Studies]]></category>
												<category><![CDATA[Ethics]]></category>
												<category><![CDATA[Social Media]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=135117</guid>
				<description><![CDATA[<p>Used by one-third of US adults and the majority of teens, the social media platform TikTok, has emerged as a hotbed for social and political commentary. Viral TikTok content regularly amasses millions of views and hundreds of thousands of comments. The platform has become the most popular app in the last four years, creating some [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/tiktok-ethics-social-medias-influence-on-moral-values/">TikTok Ethics: Social Media’s Influence on Moral Values</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
]]></description>
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<p class="wp-block-paragraph"><a href="https://www.pewresearch.org/short-reads/2024/12/20/8-facts-about-americans-and-tiktok/">Used by one-third of US adults and the majority of teens</a>, the social media platform TikTok, has emerged as a hotbed for social and political commentary. Viral TikTok content regularly amasses millions of views and hundreds of thousands of comments. <a href="https://www.theguardian.com/technology/2022/oct/22/tiktok-history-rise-algorithm-misinformation">The platform has become the most popular app in the last four years</a>, creating some of the wealthiest content creators in the world. It also has immense political and social influence, being cited as <a href="https://www.foxnews.com/video/6366072944112">a major contributor to President Trump’s second-term election</a> win. It cannot be underscored the influence TikTok has on swaying perspectives pertaining to culture, society, and politics. One reason the platform remains incredibly influential is its powerful algorithm. Several studies have found that social media algorithms, particularly TikTok’s, tend to promote controversial content that evokes anger and moral outrage. <span style="margin: 0px; padding: 0px;">While TikTok</span> users may be constantly provoked by emotionally charged posts, it’s unclear to what extent their moral values may be influenced when engaging with the app. </p>



<p class="wp-block-paragraph">The term “social media manipulation” was coined to describe how the features of social media algorithms (e.g., <a href="https://www.cambridge.org/core/journals/canadian-journal-of-philosophy/article/algorithms-manipulation-and-democracy/84A19DDC35E3983C0C2FA9FAD01185C9">hypernudging and microtargeting</a>) and the uncontrolled proliferation of misinformation <a href="https://content.e-bookshelf.de/media/reading/L-11684335-280b2cd632.pdf">bots</a> 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. <a href="https://www.schatz.senate.gov/kosma">Senators from both sides of the aisle</a> have called out divisive content about social media&#8217;s detrimental impact on young people. These arguments are not new. <span style="margin: 0px; padding: 0px;">Websites like 4chan have been publicly discussed as hotbeds for far-right radicalization that encourage dangerous behaviors like <a href="https://www.naag.org/attorney-general-journal/the-escalating-threats-of-doxxing-and-swatting-an-analysis-of-recent-developments-and-legal-responses/" target="_blank">doxxing, swatting,</a> and in some cases, <a href="https://www.theguardian.com/technology/2022/may/01/4chan-extremist-online-forum-raymond-spencer" target="_blank">mass violence</a>.</span> 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 <a href="https://journals.sagepub.com/doi/10.1177/17456916231187395?url_ver=Z39.88-2003&amp;rfr_id=ori:rid:crossref.org&amp;rfr_dat=cr_pub%20%200pubmed">the development of new social norms</a>.</p>



<p class="wp-block-paragraph">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?</p>



<p class="wp-block-paragraph">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, <a href="https://www.tiktok.com/@dej396">Dej</a> and <a href="https://www.tiktok.com/@antwontheofficial">Antwon</a> 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. </p>



<p class="wp-block-paragraph">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&#8217;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. </p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph">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.</p>



<p class="wp-block-paragraph"></p>



<p class="wp-block-paragraph"><strong>Figure 1</strong></p>



<figure class="wp-block-image size-full"><img decoding="async" width="266" height="389" src="https://bioethicstoday.org/wp-content/uploads/2026/04/image-1.png" alt="" class="wp-image-135124"/></figure>



<p class="wp-block-paragraph"><em>Taylor Montgomery, MPH is a doctoral student at Johns Hopkins University Berman Institute of Bioethics</em></p>



<p class="wp-block-paragraph"><em>Odia Kane, PhD, MPH, is a post-doctoral fellow at the Johns Hopkins University Berman Institute of Bioethics and Institute of Assured Autonomy</em></p>
<p>The post <a href="https://bioethicstoday.org/blog/tiktok-ethics-social-medias-influence-on-moral-values/">TikTok Ethics: Social Media’s Influence on Moral Values</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>Bioethics TV: The Pitt Puts the Spotlight on Supported Decision-Making</title>
				<link>https://bioethicstoday.org/blog/bioethics-tv-the-pitt-puts-the-spotlight-on-supported-decision-making/</link>
				<pubDate>Fri, 10 Apr 2026 20:30:45 +0000</pubDate>

										<category><![CDATA[BioethicsTV]]></category>
												<category><![CDATA[Disability Studies]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=135067</guid>
				<description><![CDATA[<p>The Pitt has been praised not only for its superb writing, direction, and acting, but also for its accuracy. For example, MedPage Today editor-in-chief Jeremy Faust (who is also an emergency physician) has lauded it as “a very sophisticated medical show.” The Pitt has addressed a multitude of issues, ranging from end-of-life care to lack [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/bioethics-tv-the-pitt-puts-the-spotlight-on-supported-decision-making/">Bioethics TV: The Pitt Puts the Spotlight on Supported Decision-Making</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
]]></description>
				<content:encoded><![CDATA[
<p class="wp-block-paragraph"><em>The Pitt </em>has been praised not only for its superb writing, direction, and acting, but also for its accuracy. For example, <em>MedPage Today</em> editor-in-chief Jeremy Faust (who is also an emergency physician) has lauded it as <a href="https://nam12.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.medpagetoday.com%2Fopinion%2Ffaustfiles%2F119972&amp;data=05%7C02%7CKparsi%40luc.edu%7C2b16b44cd9c24285465f08de90c84c56%7C021f4fe32b9c48248378bbcf9ec5accb%7C0%7C0%7C639107387147544149%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=M7kLp%2B0PMeYraaiTv%2FbW8I7NIbDoU0JVc%2FvS2s3oYos%3D&amp;reserved=0" target="_blank" rel="noreferrer noopener">“a very sophisticated medical show.”</a> <em>The Pitt</em> has addressed a multitude of issues, ranging from end-of-life care to lack of insurance coverage to neurodiversity. Here, we want to focus on The Pitt’s depiction of patients with intellectual disabilities. <br> <br>Over two recent episodes (Season 2, Episodes 10: “5:00 PM” and 11: “6:00 PM”), second-year resident Dr. ‘Mel’ King informs Dr. Langdon, a senior resident, that she and her intellectually disabled adult sister Becca use “supported decision-making” to make medical (and other) decisions that impact Becca’s life. While the specific details of this arrangement are not illuminated, the mere mention of this important decision-making tool is monumental and opens the door to a more robust discussion of this person-centered approach to decision-making for those who may have capacity limitations.<br> <br><strong>What is Supported Decision-Making?<br></strong> <br>This fleeting moment is one of the first times that supported decision-making (SDM) has been mentioned in such a public-facing, popular medium, representing an important moment for raising public awareness to options beyond substitute decision-making, conservatorships, and guardianships for disabled adults. <a href="https://supporteddecisions.org/about-supported-decision-making/">SDM</a> is a process that enables individuals with intellectual, developmental, and psychological disabilities to make their own life choices with the aid of individuals they have selected as ‘supporters.’ <a href="https://digitalcommons.law.ou.edu/olr/vol77/iss1/3/">According to disability scholar Leslie Francis</a>, supporters have a range of functions, increasingly articulated by state law, from aiding with communication to supporting financial, housing, education, and healthcare decisions. Supporters can help explain the choices at stake, potential costs and benefits, and different outcomes, breaking down information in accessible ways and in the manner best understood by the individual. SDM promotes autonomy and dignity in a way that mechanisms like guardianship preclude.<br> <br><strong>Supported Decision-Making: Becca and Mel<br></strong> <br>In Episode 10, Becca presents with a stomach ache at the emergency room. Dr. Mel, coded as neurodivergent herself, is distracted because she has an upcoming deposition, so Becca’s case is handed off to a senior colleague, Dr. Langdon. This turns out to be for the best (physicians typically avoid treating their own friends and family for ethical reasons) as Langdon learns sensitive information about his new patient and quickly diagnoses a urinary tract infection (UTI).<br> <br>When Mel asks about the diagnosis, Langdon aptly replies that Mel will have to speak to Becca herself. Langdon also assured Becca that it is up to her to share or not share her diagnosis with her sister. Mel is taken aback–she is her sister’s primary caretaker and confidant, and she’s used to knowing everything about Becca’s life due to the significant degree of support Becca requires (Becca lives in a supported living environment). Langdon holds firm, citing HIPAA. Becca eventually reveals to Mel that she has a boyfriend, that they are sexually active, and that she understands that this is how she contracted the UTI. Mel is shocked.<br> <br>Later, in Episode 11, Becca confirms that she has a boyfriend of six months who is also a resident of her group home. Mel wants to make sure the sex is consensual. Becca, asserting her right to privacy, requests to see Langdon. The sisters fight, and Langdon asks Mel to step out when Becca begins to cry. <br> <br>Then Langdon sees Mel outside the ER, trying to call Becca’s group home to ask about Becca’s relationship. Langdon intervenes. We then arrive at this key moment of dialogue:<br> <br><strong>Langdon:</strong> Are you Becca’s legal guardian?<br><strong>Mel:</strong> No, I have durable power of attorney but we did this thing called supported decision-making where she can… make her own decisions.<br><strong>Langdon:</strong> There you go.<br><strong>Mel:</strong> Well, this is different.<br><strong>Langdon: </strong>Why?<br><strong>Mel:</strong> Because… it is…<br> <br>This moment raises questions about whether Mel is in the right or if she is being overprotective. It makes the critical distinction between a durable power of attorney for healthcare that goes into effect when someone loses capacity (for example, if Becca had arrived and was unconscious), and SDM, which highlights Becca’s prerogative to make her own decisions with certain supports in place. Mel’s reaction that “this is different” is also important because it frames a tension that family members may feel despite their knowledge of SDM. Most of the current legislation around SDM, however, has safeguards in place to prohibit <a href="https://nam12.safelinks.protection.outlook.com/?url=https%3A%2F%2Fdigitalcommons.law.ou.edu%2Fcgi%2Fviewcontent.cgi%3Farticle%3D2312%26context%3Dolr&amp;data=05%7C02%7CKparsi%40luc.edu%7C2b16b44cd9c24285465f08de90c84c56%7C021f4fe32b9c48248378bbcf9ec5accb%7C0%7C0%7C639107387147581892%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=ijjXi5kESKv2lp55qYLi5SLfgNyG%2BPO4qu0d6JK1NSc%3D&amp;reserved=0" target="_blank" rel="noreferrer noopener">potential conflicts of interest</a> that might arise when a family member or an intimate partner is serving in the role of supporter.<br> <br><strong>Representation of Supported Decision-Making</strong><br> <br>This rare representation of SDM is incredibly important for awareness, perception, and public opinion. This positive portrayal of SDM connects it to autonomy, positions it as a viable alternative to guardianship, and highlights the ability of people with intellectual disabilities to participate in the decisions that impact their lives. And it draws our attention to several other important issues: disability and sexuality, intellectual disability and capacity to consent (sexually and in healthcare decision-making), and alternatives to models that use substitute decision-making, which have long dominated in the treatment and care of intellectually disabled persons. This storyline presents Becca and Mel as multi-dimensional, humanizing them both and resisting the tropes of infantilization, burdensomeness, or heroizing disabled persons.<br> <br>Compare this storyline to the very public coverage of Britney Spears’ conservatorship case. Spears was placed under conservatorship (managed by her father and an attorney) in 2008 following her mental health struggles. The court decision resulted in her inability to manage her own finances and participate in other major life decisions, and it lasted thirteen years until the #FreeBritney movement attracted media attention and Spears finally spoke out against what she called a coercive, abusive situation. Her father filed to reverse the conservatorship, likely to avoid deposition and public scrutiny of his actions. The court proceedings drew immense public attention to conservatorships as a human rights issue and the results of the case set a precedent for combating similar abuses in subsequent legislation.<br> <br>While the public may have this reference point, few are aware of the emerging alternatives to the type of substitute decision-making that occurs under guardian- and conservatorships. That’s why this moment on <em>The Pitt</em> is so important in drawing attention to the options that already exist for individuals like Becca. This attention to SDM through the story of Becca marks yet another positive milestone for <em>The Pitt</em>.<br> <br><em>Ally Peabody Smith, PhD, is an Assistant Professor in the Department of Population Health at Lehigh University.</em><br><em> </em><br><em>Nanette Elster, JD, MPH, is a Professor at the Neiswanger Institute for Bioethics, Loyola University Chicago Stritch School of Medicine and is the John B. Francis Co-Chair in Bioethics at the Center for Practical Bioethics.</em><br><em> </em><br><em>Debjani Mukherjee, PhD, is an Associate Professor of Medical Ethics in Clinical Medicine and Clinical Rehabilitation Medicine at Weill Cornell Medicine and Senior Clinical Ethicist at New York Presbyterian Weill Cornell Medical Center</em><br><em> </em><br><em>Kayhan Parsi, JD, PhD, is Professor and Graduate Program Director at the Neiswanger Institute for Bioethics, Loyola University Chicago Stritch School of Medicine and is the John B. Francis Co-Chair in Bioethics at the Center for Practical Bioethics.</em><br></p>
<p>The post <a href="https://bioethicstoday.org/blog/bioethics-tv-the-pitt-puts-the-spotlight-on-supported-decision-making/">Bioethics TV: The Pitt Puts the Spotlight on Supported Decision-Making</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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				<title>Why Bioethics Matters in the Debate Over Routine Infant Circumcision</title>
				<link>https://bioethicstoday.org/blog/why-bioethics-matters-in-the-debate-over-routine-infant-circumcision/</link>
				<pubDate>Sun, 05 Apr 2026 22:58:37 +0000</pubDate>

										<category><![CDATA[Clinical Ethics]]></category>
												<category><![CDATA[Ethics]]></category>
												<category><![CDATA[Health Care]]></category>
												<category><![CDATA[Pediatrics]]></category>
												<category><![CDATA[Policy]]></category>
						
				<dc:creator>Keisha Ray</dc:creator>
				<guid isPermaLink="false">https://bioethicstoday.org/?post_type=blog&#038;p=134972</guid>
				<description><![CDATA[<p>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 [&#8230;]</p>
<p>The post <a href="https://bioethicstoday.org/blog/why-bioethics-matters-in-the-debate-over-routine-infant-circumcision/">Why Bioethics Matters in the Debate Over Routine Infant Circumcision</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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<h2 class="wp-block-heading"></h2>



<p class="p1 wp-block-paragraph">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?</p>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">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?</p>



<p class="p1 wp-block-paragraph">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.</p>



<h2 class="wp-block-heading"><b>Autonomy and the Limits of Proxy Consent</b></h2>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">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?</p>



<h2 class="wp-block-heading"><b>Non-Maleficence and the Question of Harm</b></h2>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">This leads to a straightforward ethical inquiry: Is it appropriate to expose a child to surgical risk when there is no immediate medical need?</p>



<h2 class="wp-block-heading"><b>Beneficence and the Evaluation of Claimed Benefits</b></h2>



<p class="p1 wp-block-paragraph">Beneficence requires that medical interventions provide a meaningful benefit to the patient—one that justifies any associated risks.</p>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">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.</p>



<h2 class="wp-block-heading"><b>Justice and Consistency in Ethical Standards</b></h2>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">Justice, therefore, invites careful reflection on whether current practices align with the broader commitments medicine makes to protect vulnerable populations.</p>



<h2 class="wp-block-heading"><b>Culture, Tradition, and Ethical Reflection</b></h2>



<p class="p1 wp-block-paragraph">For many families, circumcision is closely tied to cultural or religious identity. Acknowledging ethical concerns does not require dismissing or devaluing these traditions.</p>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">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.</p>



<h2 class="wp-block-heading"><b>A More Ethically Coherent Approach</b></h2>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">Such an approach preserves individual freedom while respecting bodily autonomy and minimizing unnecessary risk.</p>



<h2 class="wp-block-heading"><b>Why This Conversation Matters</b></h2>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">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.</p>



<p class="p1 wp-block-paragraph">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.</p>



<p class="wp-block-paragraph"><em>Justin Bonyai, BS serves on the Board of Intact Global as Secretary–Treasurer and Director of Operations and Engagement</em></p>
<p>The post <a href="https://bioethicstoday.org/blog/why-bioethics-matters-in-the-debate-over-routine-infant-circumcision/">Why Bioethics Matters in the Debate Over Routine Infant Circumcision</a> appeared first on <a href="https://bioethicstoday.org">Bioethics Today</a>.</p>
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