The Berman Institute will be well represented at the 27th annual meeting of the American Society for Bioethics and Humanities (ASBH), with a group of faculty, fellows, and students scheduled to present. The full program is available online.
Preview our diverse presentations below by:
All times listed are Pacific.
Visit the Berman Institute table in the Networking Hall (Open 7 a.m. – 5 p.m.)
Presenters: Nathaniel Mamo, MA; Brian Hutler, JD, PhD; Mary Homan, DrPH, MA, MSHCE; Katherine Cheung, MA
Abstract: A measles outbreak in Philadelphia during 1990 and 1991 killed nine children and infected over 1400 people—six of the dead were from churches that practiced “faith-healing.” When parents at these churches refused to treat or vaccinate their children on religious grounds, a court ordered the compulsory treatment and vaccination of the children. Despite the court’s willingness to intervene in this case, the political debate over who has legitimate decision-making power in pediatric vaccination continues: Is it parents, the government, doctors, or the child? With outbreaks of measles and other vaccine-preventable diseases on the rise, and declining rates of childhood vaccination, the question takes on a new seriousness. We gathered several experts for this panel from a variety of professional disciplines to articulate the tension over legitimate decision-making in pediatric vaccination. First, a legal expert will evaluate the legality and justifiability of pediatric vaccination by the government without parental consent through a survey of laws and legal precedents. Second, a philosopher will explore whether the unique qualities of vaccines (e.g., collective benefit) create morally relevant differences that preclude standard pediatric consent requirements. Third, an ethicist will argue herd immunity does not change the permissibility of non-medical exemptions (e.g., religious exemptions) for children, and that non-medical exemptions always constitute a wrong to the child. Finally, a theologian will discuss the concerns of persons of faith with regards to mandated vaccines, especially vaccines with a morally complex development. They will conclude with recommendations for encouraging vaccine uptake as aligned with religious principles.
Evaluating a Longitudinal Ethics Curriculum for Pediatric Residents Using ACGME Milestones
Presenter: Nicholas Jabre, MD
Abstract
Background: The ACGME requires pediatric residency programs to evaluate trainees in professionalism and ethics, yet most programs lack a structured ethics curriculum. Since 2020, we have developed a three-year longitudinal, milestone-based ethics curriculum using Kern’s six-step approach. Delivered annually through a leadership program at our institution, the curriculum allows residents to engage with the material outside of clinical duties. The primary objective was to assess the curriculum’s impact on resident self-efficacy at each ACGME milestone level in ethical principles. The secondary objective was to explore how the curriculum shapes residents’ approach to resolving ethical dilemmas through narrative reflection.
Curriculum Design and Evaluation: The curriculum aligns with the ACGME Pediatric Milestone 2.0 in Professionalism and Ethics (Prof 2), with session objectives tailored to residents’ training levels. A targeted needs assessment, incorporating the ABP bioethics bibliography and resident educational preferences, informed the curriculum. Case-based learning and simulation were implemented to enhance engagement.
Residents completed pre- and post-session surveys assessing self-efficacy at each milestone level using a 5-point Likert scale. Mean score differences were analyzed to evaluate changes in self-efficacy. Additionally, qualitative analysis of residents’ narrative reflections explored ethical dilemmas encountered, moral conflicts described, and resolution strategies employed.
Results: Resident-reported self-efficacy improved across all milestone levels, with some gains reaching statistical significance. Ongoing qualitative analysis of reflective writing will provide further insight into how the curriculum influences residents’ ethical reasoning and decision-making.
Conclusion: These findings suggest that a structured, milestone-based ethics curriculum may enhance pediatric residents’ confidence and competency in ethical decision-making.
Alumni and Friends of the Berman Institute are invited to our reception at The Regency Club in the Hyatt Regency Portland at the Oregon Convention Center.
Visit the Berman Institute table in the Networking Hall (Open 7 a.m. – 4 p.m.)
Bioethical Dilemmas in Extracorporeal Cardiopulmonary Resuscitation
Presenter: Kelsie Mietla, MD
Abstract: Cardiac arrest has significant associated morbidity and mortality. Out-of-hospital cardiac arrest (OHCA) has extremely high mortality with close to 90% of patients not surviving the index hospitalization. Extracorporeal membrane oxygenation (ECMO) has been traditionally used for cardiac failure and respiratory failure, but is increasingly being utilized for cardiac arrest, known as extracorporeal cardiopulmonary resuscitation (ECPR). ECPR is showing promise for reducing mortality and morbidity, such as neurologic injury, from cardiac arrest. As ECMO is increasingly utilized for ECPR, multiple potential ethical questions arise. While data on ECPR shows a promising trend towards reduced morbidity and mortality, there are conflicting results and an overall paucity of data. ECMO has significant associated risks and it is crucial to ensure that we are not inadvertently causing more harm than benefit. Another potential problem arises when choosing which patients receive ECPR. Protocols and individual clinician choices about when to provide ECPR may contain biases about factors such as race, age, and gender that create unjust allocation. In addition, ECMO is a scarce resource that requires specialized staff and intensive care unit (ICU) bed availability. As ECPR is increasingly utilized, problems with resource allocation will arise, which may lead to poor outcomes for other patients, such as planned cardiac surgery cases that are delayed. It is imperative to further evaluate the many ethical dilemmas arising as ECPR becomes increasingly incorporated into standard cardiac arrest care.
The Hidden Social Lives of AI Fairness Metrics
Presenter: Ricky Mouser, PhD
Abstract: In response to concerns about algorithmic bias, developers of AI models have converged on six or seven distinct families of fairness metrics. These numerical indicators attempt to measure or quantify social biases in AI model performance. But their historical and theoretical underpinnings remain underexplored. By examining their origins, and why some have socially prevailed over others, I challenge the unquestioned role of these fairness metrics in evidence-based decision-making. In many cases, I argue that they function as sites of imagined moral consensus that prevent genuine moral discourse from taking place.
In practice, AI researchers conduct only cursory searches for highly-cited papers, aiming to replicate and extend their approach while exceeding their results on relevant measurables. Once a fairness metric appears in publication, it sets not only a normative standard of what fairness is, but also a technical benchmark for how fair current models are. A resulting valuation pipeline has sprung up where AI researchers consistently use a handful of relatively standardized metrics to frame moral considerations for evidence-based decision-makers.
Unfortunately, this assemblage of cobbled-together fairness metrics does not add up to a morally coherent view of what justice requires. Different metrics disagree deeply on what justice is, saddling evidence-based decision-makers with what I call fairness tradeoffs, in which metrics impose a practical stance on what fair treatment requires, making important moral choices for us. But since justice and fairness do not seem to be quantities in disguise, this metric-first approach obscures the very moral concerns it claims to “objectively” represent.
Presenter: Taylor Montgomery, MPH
Abstract: Uterine transplants (UTx) are a novel and complex family planning opportunity for patients with absolute uterine factor infertility (AUFI). To date, approximately 100 UTx have been performed, and more than 50 of these UTxs have been performed in the last 3 years. There are only three known Black uterine transplant recipients worldwide, according to the Penn Medicine UTx Clinical Trial (UNTIL). The unique historical and ethical implications pertaining to uterine transplants, impart a need to evaluate why Black representation in new technology development is critical.
By increasing representation of Black birthing persons in UTx research studies we can, (1) address disparities in infertility and infertility treatment, (2) promote reproductive autonomy for a group historically and presently subjugated and criminalized for their reproductive choices, and (3) advance human leukocyte antigen (HLA) matching which ensures a diverse, inclusive genome is assessed and incorporated for transplants. More inclusivity at the initial stages of research mitigates the risk of inequities and injustices in the post-research, clinical, and population health stages of UTx. Without significant efforts to engage underrepresented groups in UTx research, we may reinforce excluding these groups from cutting-edge advancements. As UTx technologies risk exacerbating existing racial disparities in fertility care and pregnancy outcomes, clinicians and bioethicists should be engaged in this critical conversation.
Moral encroachment shapes public perceptions of neurotechnology: an empirical bioethics study
Presenter: Lomax Boyd, PhD
Abstract: Advances in neurotechnology, such as neuromorphic devices where human neural tissue is combined with artificial intelligence systems, may help overcome barriers to conventional computing, create more sustainable information processing architectures, and more accurately model human brain disorders. But these sentient-like systems also raise ethical concerns. Bioethicists argue that if ‘biocomputers’ become conscious, they have moral status, or at least moral patiency, which places limits on research. Previous studies conflict on whether public perspectives align with the moral intuitions that underlie these views. We conducted an experimental bioethics study to examine public attitudes to biocomputers being used for different applications and in possession of distinct cognitive capacities. We report several key findings. First, respondents tend to attribute moral status to biocomputers, if they are perceived as conscious, which aligns with conventional bioethics. Yet, consciousness attributions were positively correlated with overall support for research. Finally, non-moral, factual beliefs about the capacities of biocomputers were influenced by the moral salience of specific applications. We propose that the concept of ‘moral encroachment’ provides an explanatory theory for these results, whereby individuals use moral beliefs/commitments to guide formation of factual, non-beliefs that might otherwise limit research that could be viewed as morally consequential. Our interpretation is counter-intuitive to conventional bioethics rationale and motivations that drive public public engagement efforts; namely, science communication aimed at providing factual information for use in formulating ethical and moral attitudes, policies, and normative recommendations. Our findings provide key insights into factors shaping moral and factual beliefs about emerging biotechnologies.
Can we learn from our dogs about dying?
Presenter: Jennifer Eitingon, MD
Abstract: Humans form deep emotional bonds with pets, often considering them family. Advances in veterinary medicine mirror human healthcare, yet end-of-life care differs significantly. Many remark that “we treat our dogs better than ourselves when it comes to dying,” prompting an exploration of why that may be.
In veterinary medicine, euthanasia is a widely accepted, compassionate way to prevent animal suffering. Veterinarians guide owners in recognizing when it is time to let go, as companion animals have shorter lifespans, making this decision a frequent reality. The message is clear: when a pet is suffering with no chance of recovery, euthanasia is the humane choice.
No direct parallel exists in human medicine. Patients can express their end-of-life preferences, while animals cannot. Physicians, typically life-affirming, provide palliative care, offering measures such as withdrawing treatment which may shorten life, or palliative sedation when time is short and symptoms are intractable. However, physicians rarely help patients determine the best time to die, as veterinarians do for animals. The closest analogy is medical aid in dying, which is available to few and used rarely.
The difference isn’t just that dogs receive euthanasia—it’s that veterinarians engage in explicit conversations about when death is most appropriate. For a variety of reasons, human medicine may avoid offering such guidance, although providing thoughtful, accurate, well-informed recommendations could help patients make truly autonomous choices about their own end-of-life care.
Reexamining equipoise through the lens of potential research participants
Panelists: Elliott Weiss, MD; Stephanie Kraft, JD; Stephanie Morain, PhD, MPH; Luke Gelinas, PhD
Abstract: The concept of equipoise has long been debated among the research ethics community, but its perception among potential research participants has received relatively little attention. This panel will refocus the debate about equipoise through the lens of patient and family experiences. Using a combination of conceptual and empirical analyses, the panelists will reexamine equipoise and explore appropriate paths forward for clinical trial design and regulation.
The moderator will introduce the concept of equipoise, discuss its implications for clinical research, and highlight ongoing ethical debates. Panelist 1 will then share empirical data from parents of infants in the neonatal intensive care unit (n=38) about how they assess equipoise in comparative effectiveness research, exploring how parents perceive a trial’s ethical acceptability, their preferences for informed consent, and the nuanced relationship between clinical communication, trust in the knowledge of one’s clinician, and trust in research. Panelist 2 will further examine communication with participants, drawing on an empirical analysis of interviews with key stakeholders about notification of pragmatic clinical trials (n=23), as well as a historical and normative examination of how regulatory criteria for communication to participants are applied in practice. Finally, Panelist 3 will present a conceptual analysis via a novel taxonomy of the nature of patient and family concerns related to randomization in clinical trials, highlighting the interplay between views on randomization and perceptions of equipoise. Together, the panelists will explore how a nuanced consideration of these concepts can facilitate more targeted regulatory responses and a path forward for clinical research.
Panelists: Yoram Unguru, MD, MS, MA, HEC-C; Douglas Diekema, MD, MPH; Jennifer Blumenthal-Barby, PhD, MA; Liza-Marie Johnson, MD, MPH, MSB, HEC-C
Abstract: When new research findings prove clearly superior to existing treatments, clinicians may recommend altering treatment to allow for improved clinical outcomes; this is especially true for childhood cancer. Although many parents welcome such an opportunity, some may have reservations about new research results, preferring the original treatment plan even when outcomes are less favorable.
Such parental decisions may provoke strong emotions within members of the healthcare team often resulting in frustration and moral distress. To persuade parents to reconsider the newer treatment plan, clinicians may adopt a range of strategies, including employing nudges. When a new treatment significantly improves a child’s chance for cure, should a parent’s reasons against accepting the new approach matter and if so, where does one draw the line? Is the use of nudges ethically permissible in such situations? Are clinicians justified in seeking state intervention to assure treatment with the new, better treatment? During the informed consent process for future patients, is non-disclosure of the previous standard therapy appropriate?
>Disagreements are common in our increasingly polarized society. Viewed through the lens of interdisciplinary collaboration, we consider diverse perspectives and the role of nudges, non-disclosure of less efficacious options, and the role of state intervention. To frame the discussion and highlight these themes, we will present the case of a young child with curable cancer whose parents refused to switch their child’s current treatment to the new standard of care. We will engage the audience to share their own insights, including best practices for bridging disagreements.
IRB Practices in Promoting Inclusion of Pregnant People in Research
Presenter: Caleigh Propes
Abstract: Pregnant individuals have historically been excluded from clinical research. This exclusion has resulted in a critical scientific evidence gap; it also represents a fundamental injustice, as it has denied pregnant individuals the potential direct benefits of research and has underrepresented their interests.
Over three decades ago, the Institute of Medicine recommended that pregnant individuals be presumed eligible to participate in clinical studies. Numerous additional reports and guidance documents have since affirmed the need to include pregnant people in research. These recommendations notwithstanding, exclusion of pregnant individuals remains common.
Facilitating appropriate inclusion of pregnant individuals in research requires altering entrenched cultural assumptions and corresponding norms. National and international experts have advised that institutional review boards (IRB), funders, and other stakeholders require justification when pregnant people are excluded from research. However, the extent to which institutions have adopted policies consistent with this recommendation remains unknown.
This presentation will discuss findings from a study of IRB policies and related guidance documents from the 50 US institutions receiving the highest amount of NIH funding (based on 2023 levels). These findings clarify the extent to which institutions adopt and disseminate guidance and policies that adhere to expert recommendations to promote inclusion of pregnant people in research. Finally, the presentation will highlight key areas of improvement and best practices for IRB and HRPP professionals.
Presenter: Ambria Williams; (Yoram Unguru is one of the coauthors of the paper but is not presenting)
Abstract: When an infant or young child is diagnosed with sickle cell disease (SCD), parents and caregivers can become overwhelmed with treatment options. This becomes especially difficult when considering gene therapy, a potentially curative yet risky option. Given the novelty and risks associated with gene therapy, patients and physicians may struggle to make a values-based decision regarding whether to pursue the treatment. As such, the ethical design and implementation of decision aids around treatment options for SCD are needed to help patients and families make an informed decision. Patient decision aids are support tools to help individuals make complex medical decisions. They can come in different forms, such as infographics, cartoons, or websites. This project focuses on the development of the first documented narrative-based decision aid for SCD patients and caregivers. Informed by a working group of experts and qualitative research methods such as focus groups and semi-structured interviews, an educational comic-themed website was developed to explain SCD treatment options. By following a fictional patient’s story, website users can gain an understanding of gene therapy, bone marrow transplant, chronic transfusion therapy, and medication options for SCD. In addition to the website, one science fiction short story and one fairytale short story were developed to aid patients ages 7-13, along with their guardians, to learn about gene therapy. This presentation will evaluate how educational graphic stories can help facilitate patient understanding around novel treatment options
What’s so special about cancer? The need for responsible opioid prescribing for cancer pain
Panelists: Travis Rieder, PhD; Vivian Altiery De Jesus, MD, MBE; Yoram Unguru, MD, MS, MA, HEC-C
Abstract: Over the last decade, the United States has fairly aggressively swung away from the rather free attitude towards opioid prescribing of the late 1990s and early 2000s towards a more restrictionist model. In response to the “opioid epidemic,” academics and medical and governing bodies made many recommendations for limiting opioid prescribing. These recommendations tended to focus on one of two groups. In the first group, many provided guidelines for prescribing opioids for acute pain; examples of this sort of recommendation can be found at Michigan OPEN (https://michigan-open.org). While other guidelines—most prominently, the CDC’s 2016 guidelines—provided recommendations for chronic, non-cancer pain.
Cancer pain, however, was often overlooked, which has left a growing population of cancer survivors without guidelines. In this panel discussion, we will explore why that is the case, and what should be done about it. Panelist #1, a pediatric hematologist/oncologist and bioethicist, will frame the discussion by providing examples of cancer and non-cancer patients, and suggest that a form of “cancer exceptionalism” concerning opioid prescribing leads to very different care in the two cases. Panelist #2, an oncology fellow and bioethicist who has written on ethical issues concerning pain management, will explore the risks to cancer patients by this exceptionalism, as it tends to limit exploration of responsible prescribing. And Panelist #3—a philosopher and bioethicist who has published widely on ethical and policy issues concerning pain and opioids—will draw on the first two panelists in order to formulate lessons for ethics and pain medicine
Exploring the Concept of “Waste” in Clinical Decision-Making and Healthcare Policies
Panelists: Laura Guidry-Grimes, PhD, HEC-C; Olivia Kates, MD, MA; Maria Merritt, PhD; Govind Persad, PhD, JD
Abstract: The concept of “waste” has numerous meanings in clinical decision-making and healthcare policies. The imperative to eliminate waste has become an especially timely consideration in the 2025 political landscape. This panel brings together experts from diverse backgrounds to explore the concept of “waste.” The first panelist, an infectious disease and transplant physician, will analyze “waste” contrasted with “stewardship.” Individuals and organizations have duties to serve as good stewards of scarce health resources, including antimicrobials and donor organs. The panelist will explore how these stewards understand and use “waste” to make and justify decisions at individual, organizational, and policy levels. The second panelist, a clinical ethicist, will evaluate how concerns about “efficiency” are often rooted in concerns about waste, but ableism, ageism, and other biases can undergird assumptions about efficient use of resources. Case vignettes will illustrate how concerns about waste can inequitably impact patient care. The third panelist, a bioethicist working at the intersection of climate change and public health, will reflect critically on the concept of healthcare “waste” regarding single-use plastics and disposal practices (incineration, landfilling, etc.), highlighting environmental (in)justice. The fourth panelist, a bioethicist and legal scholar, will discuss how waste is invoked to dodge inescapable ethical tradeoffs in health insurance and resource allocation. The panelist will consider whether wasteful policies must be inferior in each respect or merely inferior overall. The panelist will also discuss parallel challenges in defining “waste” and “futility.” The panel will engage the audience in their experiences regarding meanings and implications of waste.
What’s so special about cancer? The need for responsible opioid prescribing for cancer pain
Panelists: Travis Rieder, PhD; Vivian Altiery De Jesus, MD, MBE; Yoram Unguru, MD, MS, MA, HEC-C
Abstract: Over the last decade, the United States has fairly aggressively swung away from the rather free attitude towards opioid prescribing of the late 1990s and early 2000s towards a more restrictionist model. In response to the “opioid epidemic,” academics and medical and governing bodies made many recommendations for limiting opioid prescribing. These recommendations tended to focus on one of two groups. In the first group, many provided guidelines for prescribing opioids for acute pain; examples of this sort of recommendation can be found at Michigan OPEN (https://michigan-open.org). While other guidelines—most prominently, the CDC’s 2016 guidelines—provided recommendations for chronic, non-cancer pain.
Cancer pain, however, was often overlooked, which has left a growing population of cancer survivors without guidelines. In this panel discussion, we will explore why that is the case, and what should be done about it. Panelist #1, a pediatric hematologist/oncologist and bioethicist, will frame the discussion by providing examples of cancer and non-cancer patients, and suggest that a form of “cancer exceptionalism” concerning opioid prescribing leads to very different care in the two cases. Panelist #2, an oncology fellow and bioethicist who has written on ethical issues concerning pain management, will explore the risks to cancer patients by this exceptionalism, as it tends to limit exploration of responsible prescribing. And Panelist #3—a philosopher and bioethicist who has published widely on ethical and policy issues concerning pain and opioids—will draw on the first two panelists in order to formulate lessons for ethics and pain medicine
Moral encroachment shapes public perceptions of neurotechnology: an empirical bioethics study
Presenter: Lomax Boyd, PhD
Abstract: Advances in neurotechnology, such as neuromorphic devices where human neural tissue is combined with artificial intelligence systems, may help overcome barriers to conventional computing, create more sustainable information processing architectures, and more accurately model human brain disorders. But these sentient-like systems also raise ethical concerns. Bioethicists argue that if ‘biocomputers’ become conscious, they have moral status, or at least moral patiency, which places limits on research. Previous studies conflict on whether public perspectives align with the moral intuitions that underlie these views. We conducted an experimental bioethics study to examine public attitudes to biocomputers being used for different applications and in possession of distinct cognitive capacities. We report several key findings. First, respondents tend to attribute moral status to biocomputers, if they are perceived as conscious, which aligns with conventional bioethics. Yet, consciousness attributions were positively correlated with overall support for research. Finally, non-moral, factual beliefs about the capacities of biocomputers were influenced by the moral salience of specific applications. We propose that the concept of ‘moral encroachment’ provides an explanatory theory for these results, whereby individuals use moral beliefs/commitments to guide formation of factual, non-beliefs that might otherwise limit research that could be viewed as morally consequential. Our interpretation is counter-intuitive to conventional bioethics rationale and motivations that drive public public engagement efforts; namely, science communication aimed at providing factual information for use in formulating ethical and moral attitudes, policies, and normative recommendations. Our findings provide key insights into factors shaping moral and factual beliefs about emerging biotechnologies.
Presenters: Nathaniel Mamo, MA; Brian Hutler, JD, PhD; Mary Homan, DrPH, MA, MSHCE; Katherine Cheung, MA
Abstract: A measles outbreak in Philadelphia during 1990 and 1991 killed nine children and infected over 1400 people—six of the dead were from churches that practiced “faith-healing.” When parents at these churches refused to treat or vaccinate their children on religious grounds, a court ordered the compulsory treatment and vaccination of the children. Despite the court’s willingness to intervene in this case, the political debate over who has legitimate decision-making power in pediatric vaccination continues: Is it parents, the government, doctors, or the child? With outbreaks of measles and other vaccine-preventable diseases on the rise, and declining rates of childhood vaccination, the question takes on a new seriousness. We gathered several experts for this panel from a variety of professional disciplines to articulate the tension over legitimate decision-making in pediatric vaccination. First, a legal expert will evaluate the legality and justifiability of pediatric vaccination by the government without parental consent through a survey of laws and legal precedents. Second, a philosopher will explore whether the unique qualities of vaccines (e.g., collective benefit) create morally relevant differences that preclude standard pediatric consent requirements. Third, an ethicist will argue herd immunity does not change the permissibility of non-medical exemptions (e.g., religious exemptions) for children, and that non-medical exemptions always constitute a wrong to the child. Finally, a theologian will discuss the concerns of persons of faith with regards to mandated vaccines, especially vaccines with a morally complex development. They will conclude with recommendations for encouraging vaccine uptake as aligned with religious principles.
Can we learn from our dogs about dying?
Presenter: Jennifer Eitingon, MD
Abstract: Humans form deep emotional bonds with pets, often considering them family. Advances in veterinary medicine mirror human healthcare, yet end-of-life care differs significantly. Many remark that “we treat our dogs better than ourselves when it comes to dying,” prompting an exploration of why that may be.
In veterinary medicine, euthanasia is a widely accepted, compassionate way to prevent animal suffering. Veterinarians guide owners in recognizing when it is time to let go, as companion animals have shorter lifespans, making this decision a frequent reality. The message is clear: when a pet is suffering with no chance of recovery, euthanasia is the humane choice.
No direct parallel exists in human medicine. Patients can express their end-of-life preferences, while animals cannot. Physicians, typically life-affirming, provide palliative care, offering measures such as withdrawing treatment which may shorten life, or palliative sedation when time is short and symptoms are intractable. However, physicians rarely help patients determine the best time to die, as veterinarians do for animals. The closest analogy is medical aid in dying, which is available to few and used rarely.
The difference isn’t just that dogs receive euthanasia—it’s that veterinarians engage in explicit conversations about when death is most appropriate. For a variety of reasons, human medicine may avoid offering such guidance, although providing thoughtful, accurate, well-informed recommendations could help patients make truly autonomous choices about their own end-of-life care.
Evaluating a Longitudinal Ethics Curriculum for Pediatric Residents Using ACGME Milestones
Presenter: Nicholas Jabre, MD
Abstract
Background: The ACGME requires pediatric residency programs to evaluate trainees in professionalism and ethics, yet most programs lack a structured ethics curriculum. Since 2020, we have developed a three-year longitudinal, milestone-based ethics curriculum using Kern’s six-step approach. Delivered annually through a leadership program at our institution, the curriculum allows residents to engage with the material outside of clinical duties. The primary objective was to assess the curriculum’s impact on resident self-efficacy at each ACGME milestone level in ethical principles. The secondary objective was to explore how the curriculum shapes residents’ approach to resolving ethical dilemmas through narrative reflection.
Curriculum Design and Evaluation: The curriculum aligns with the ACGME Pediatric Milestone 2.0 in Professionalism and Ethics (Prof 2), with session objectives tailored to residents’ training levels. A targeted needs assessment, incorporating the ABP bioethics bibliography and resident educational preferences, informed the curriculum. Case-based learning and simulation were implemented to enhance engagement.
Residents completed pre- and post-session surveys assessing self-efficacy at each milestone level using a 5-point Likert scale. Mean score differences were analyzed to evaluate changes in self-efficacy. Additionally, qualitative analysis of residents’ narrative reflections explored ethical dilemmas encountered, moral conflicts described, and resolution strategies employed.
Results: Resident-reported self-efficacy improved across all milestone levels, with some gains reaching statistical significance. Ongoing qualitative analysis of reflective writing will provide further insight into how the curriculum influences residents’ ethical reasoning and decision-making.
Conclusion: These findings suggest that a structured, milestone-based ethics curriculum may enhance pediatric residents’ confidence and competency in ethical decision-making.
Exploring the Concept of “Waste” in Clinical Decision-Making and Healthcare Policies
Panelists: Laura Guidry-Grimes, PhD, HEC-C; Olivia Kates, MD, MA; Maria Merritt, PhD; Govind Persad, PhD, JD
Abstract: The concept of “waste” has numerous meanings in clinical decision-making and healthcare policies. The imperative to eliminate waste has become an especially timely consideration in the 2025 political landscape. This panel brings together experts from diverse backgrounds to explore the concept of “waste.” The first panelist, an infectious disease and transplant physician, will analyze “waste” contrasted with “stewardship.” Individuals and organizations have duties to serve as good stewards of scarce health resources, including antimicrobials and donor organs. The panelist will explore how these stewards understand and use “waste” to make and justify decisions at individual, organizational, and policy levels. The second panelist, a clinical ethicist, will evaluate how concerns about “efficiency” are often rooted in concerns about waste, but ableism, ageism, and other biases can undergird assumptions about efficient use of resources. Case vignettes will illustrate how concerns about waste can inequitably impact patient care. The third panelist, a bioethicist working at the intersection of climate change and public health, will reflect critically on the concept of healthcare “waste” regarding single-use plastics and disposal practices (incineration, landfilling, etc.), highlighting environmental (in)justice. The fourth panelist, a bioethicist and legal scholar, will discuss how waste is invoked to dodge inescapable ethical tradeoffs in health insurance and resource allocation. The panelist will consider whether wasteful policies must be inferior in each respect or merely inferior overall. The panelist will also discuss parallel challenges in defining “waste” and “futility.” The panel will engage the audience in their experiences regarding meanings and implications of waste.
Exploring the Concept of “Waste” in Clinical Decision-Making and Healthcare Policies
Panelists: Laura Guidry-Grimes, PhD, HEC-C; Olivia Kates, MD, MA; Maria Merritt, PhD; Govind Persad, PhD, JD
Abstract: The concept of “waste” has numerous meanings in clinical decision-making and healthcare policies. The imperative to eliminate waste has become an especially timely consideration in the 2025 political landscape. This panel brings together experts from diverse backgrounds to explore the concept of “waste.” The first panelist, an infectious disease and transplant physician, will analyze “waste” contrasted with “stewardship.” Individuals and organizations have duties to serve as good stewards of scarce health resources, including antimicrobials and donor organs. The panelist will explore how these stewards understand and use “waste” to make and justify decisions at individual, organizational, and policy levels. The second panelist, a clinical ethicist, will evaluate how concerns about “efficiency” are often rooted in concerns about waste, but ableism, ageism, and other biases can undergird assumptions about efficient use of resources. Case vignettes will illustrate how concerns about waste can inequitably impact patient care. The third panelist, a bioethicist working at the intersection of climate change and public health, will reflect critically on the concept of healthcare “waste” regarding single-use plastics and disposal practices (incineration, landfilling, etc.), highlighting environmental (in)justice. The fourth panelist, a bioethicist and legal scholar, will discuss how waste is invoked to dodge inescapable ethical tradeoffs in health insurance and resource allocation. The panelist will consider whether wasteful policies must be inferior in each respect or merely inferior overall. The panelist will also discuss parallel challenges in defining “waste” and “futility.” The panel will engage the audience in their experiences regarding meanings and implications of waste.
Bioethical Dilemmas in Extracorporeal Cardiopulmonary Resuscitation
Presenter: Kelsie Mietla, MD
Abstract: Cardiac arrest has significant associated morbidity and mortality. Out-of-hospital cardiac arrest (OHCA) has extremely high mortality with close to 90% of patients not surviving the index hospitalization. Extracorporeal membrane oxygenation (ECMO) has been traditionally used for cardiac failure and respiratory failure, but is increasingly being utilized for cardiac arrest, known as extracorporeal cardiopulmonary resuscitation (ECPR). ECPR is showing promise for reducing mortality and morbidity, such as neurologic injury, from cardiac arrest. As ECMO is increasingly utilized for ECPR, multiple potential ethical questions arise. While data on ECPR shows a promising trend towards reduced morbidity and mortality, there are conflicting results and an overall paucity of data. ECMO has significant associated risks and it is crucial to ensure that we are not inadvertently causing more harm than benefit. Another potential problem arises when choosing which patients receive ECPR. Protocols and individual clinician choices about when to provide ECPR may contain biases about factors such as race, age, and gender that create unjust allocation. In addition, ECMO is a scarce resource that requires specialized staff and intensive care unit (ICU) bed availability. As ECPR is increasingly utilized, problems with resource allocation will arise, which may lead to poor outcomes for other patients, such as planned cardiac surgery cases that are delayed. It is imperative to further evaluate the many ethical dilemmas arising as ECPR becomes increasingly incorporated into standard cardiac arrest care.
Presenter: Taylor Montgomery, MPH
Abstract: Uterine transplants (UTx) are a novel and complex family planning opportunity for patients with absolute uterine factor infertility (AUFI). To date, approximately 100 UTx have been performed, and more than 50 of these UTxs have been performed in the last 3 years. There are only three known Black uterine transplant recipients worldwide, according to the Penn Medicine UTx Clinical Trial (UNTIL). The unique historical and ethical implications pertaining to uterine transplants, impart a need to evaluate why Black representation in new technology development is critical.
By increasing representation of Black birthing persons in UTx research studies we can, (1) address disparities in infertility and infertility treatment, (2) promote reproductive autonomy for a group historically and presently subjugated and criminalized for their reproductive choices, and (3) advance human leukocyte antigen (HLA) matching which ensures a diverse, inclusive genome is assessed and incorporated for transplants. More inclusivity at the initial stages of research mitigates the risk of inequities and injustices in the post-research, clinical, and population health stages of UTx. Without significant efforts to engage underrepresented groups in UTx research, we may reinforce excluding these groups from cutting-edge advancements. As UTx technologies risk exacerbating existing racial disparities in fertility care and pregnancy outcomes, clinicians and bioethicists should be engaged in this critical conversation.
Reexamining equipoise through the lens of potential research participants
Panelists: Elliott Weiss, MD; Stephanie Kraft, JD; Stephanie Morain, PhD, MPH; Luke Gelinas, PhD
Abstract: The concept of equipoise has long been debated among the research ethics community, but its perception among potential research participants has received relatively little attention. This panel will refocus the debate about equipoise through the lens of patient and family experiences. Using a combination of conceptual and empirical analyses, the panelists will reexamine equipoise and explore appropriate paths forward for clinical trial design and regulation.
The moderator will introduce the concept of equipoise, discuss its implications for clinical research, and highlight ongoing ethical debates. Panelist 1 will then share empirical data from parents of infants in the neonatal intensive care unit (n=38) about how they assess equipoise in comparative effectiveness research, exploring how parents perceive a trial’s ethical acceptability, their preferences for informed consent, and the nuanced relationship between clinical communication, trust in the knowledge of one’s clinician, and trust in research. Panelist 2 will further examine communication with participants, drawing on an empirical analysis of interviews with key stakeholders about notification of pragmatic clinical trials (n=23), as well as a historical and normative examination of how regulatory criteria for communication to participants are applied in practice. Finally, Panelist 3 will present a conceptual analysis via a novel taxonomy of the nature of patient and family concerns related to randomization in clinical trials, highlighting the interplay between views on randomization and perceptions of equipoise. Together, the panelists will explore how a nuanced consideration of these concepts can facilitate more targeted regulatory responses and a path forward for clinical research.
The Hidden Social Lives of AI Fairness Metrics
Presenter: Ricky Mouser, PhD
Abstract: In response to concerns about algorithmic bias, developers of AI models have converged on six or seven distinct families of fairness metrics. These numerical indicators attempt to measure or quantify social biases in AI model performance. But their historical and theoretical underpinnings remain underexplored. By examining their origins, and why some have socially prevailed over others, I challenge the unquestioned role of these fairness metrics in evidence-based decision-making. In many cases, I argue that they function as sites of imagined moral consensus that prevent genuine moral discourse from taking place.
In practice, AI researchers conduct only cursory searches for highly-cited papers, aiming to replicate and extend their approach while exceeding their results on relevant measurables. Once a fairness metric appears in publication, it sets not only a normative standard of what fairness is, but also a technical benchmark for how fair current models are. A resulting valuation pipeline has sprung up where AI researchers consistently use a handful of relatively standardized metrics to frame moral considerations for evidence-based decision-makers.
Unfortunately, this assemblage of cobbled-together fairness metrics does not add up to a morally coherent view of what justice requires. Different metrics disagree deeply on what justice is, saddling evidence-based decision-makers with what I call fairness tradeoffs, in which metrics impose a practical stance on what fair treatment requires, making important moral choices for us. But since justice and fairness do not seem to be quantities in disguise, this metric-first approach obscures the very moral concerns it claims to “objectively” represent.
IRB Practices in Promoting Inclusion of Pregnant People in Research
Presenter: Caleigh Propes
Abstract: Pregnant individuals have historically been excluded from clinical research. This exclusion has resulted in a critical scientific evidence gap; it also represents a fundamental injustice, as it has denied pregnant individuals the potential direct benefits of research and has underrepresented their interests.
Over three decades ago, the Institute of Medicine recommended that pregnant individuals be presumed eligible to participate in clinical studies. Numerous additional reports and guidance documents have since affirmed the need to include pregnant people in research. These recommendations notwithstanding, exclusion of pregnant individuals remains common.
Facilitating appropriate inclusion of pregnant individuals in research requires altering entrenched cultural assumptions and corresponding norms. National and international experts have advised that institutional review boards (IRB), funders, and other stakeholders require justification when pregnant people are excluded from research. However, the extent to which institutions have adopted policies consistent with this recommendation remains unknown.
This presentation will discuss findings from a study of IRB policies and related guidance documents from the 50 US institutions receiving the highest amount of NIH funding (based on 2023 levels). These findings clarify the extent to which institutions adopt and disseminate guidance and policies that adhere to expert recommendations to promote inclusion of pregnant people in research. Finally, the presentation will highlight key areas of improvement and best practices for IRB and HRPP professionals.
What’s so special about cancer? The need for responsible opioid prescribing for cancer pain
Panelists: Travis Rieder, PhD; Vivian Altiery De Jesus, MD, MBE; Yoram Unguru, MD, MS, MA, HEC-C
Abstract: Over the last decade, the United States has fairly aggressively swung away from the rather free attitude towards opioid prescribing of the late 1990s and early 2000s towards a more restrictionist model. In response to the “opioid epidemic,” academics and medical and governing bodies made many recommendations for limiting opioid prescribing. These recommendations tended to focus on one of two groups. In the first group, many provided guidelines for prescribing opioids for acute pain; examples of this sort of recommendation can be found at Michigan OPEN (https://michigan-open.org). While other guidelines—most prominently, the CDC’s 2016 guidelines—provided recommendations for chronic, non-cancer pain.
Cancer pain, however, was often overlooked, which has left a growing population of cancer survivors without guidelines. In this panel discussion, we will explore why that is the case, and what should be done about it. Panelist #1, a pediatric hematologist/oncologist and bioethicist, will frame the discussion by providing examples of cancer and non-cancer patients, and suggest that a form of “cancer exceptionalism” concerning opioid prescribing leads to very different care in the two cases. Panelist #2, an oncology fellow and bioethicist who has written on ethical issues concerning pain management, will explore the risks to cancer patients by this exceptionalism, as it tends to limit exploration of responsible prescribing. And Panelist #3—a philosopher and bioethicist who has published widely on ethical and policy issues concerning pain and opioids—will draw on the first two panelists in order to formulate lessons for ethics and pain medicine
Presenter: Ambria Williams; (Yoram Unguru is one of the coauthors of the paper but is not presenting)
Abstract: When an infant or young child is diagnosed with sickle cell disease (SCD), parents and caregivers can become overwhelmed with treatment options. This becomes especially difficult when considering gene therapy, a potentially curative yet risky option. Given the novelty and risks associated with gene therapy, patients and physicians may struggle to make a values-based decision regarding whether to pursue the treatment. As such, the ethical design and implementation of decision aids around treatment options for SCD are needed to help patients and families make an informed decision. Patient decision aids are support tools to help individuals make complex medical decisions. They can come in different forms, such as infographics, cartoons, or websites. This project focuses on the development of the first documented narrative-based decision aid for SCD patients and caregivers. Informed by a working group of experts and qualitative research methods such as focus groups and semi-structured interviews, an educational comic-themed website was developed to explain SCD treatment options. By following a fictional patient’s story, website users can gain an understanding of gene therapy, bone marrow transplant, chronic transfusion therapy, and medication options for SCD. In addition to the website, one science fiction short story and one fairytale short story were developed to aid patients ages 7-13, along with their guardians, to learn about gene therapy. This presentation will evaluate how educational graphic stories can help facilitate patient understanding around novel treatment options
Panelists: Yoram Unguru, MD, MS, MA, HEC-C; Douglas Diekema, MD, MPH; Jennifer Blumenthal-Barby, PhD, MA; Liza-Marie Johnson, MD, MPH, MSB, HEC-C
Abstract: When new research findings prove clearly superior to existing treatments, clinicians may recommend altering treatment to allow for improved clinical outcomes; this is especially true for childhood cancer. Although many parents welcome such an opportunity, some may have reservations about new research results, preferring the original treatment plan even when outcomes are less favorable.
Such parental decisions may provoke strong emotions within members of the healthcare team often resulting in frustration and moral distress. To persuade parents to reconsider the newer treatment plan, clinicians may adopt a range of strategies, including employing nudges. When a new treatment significantly improves a child’s chance for cure, should a parent’s reasons against accepting the new approach matter and if so, where does one draw the line? Is the use of nudges ethically permissible in such situations? Are clinicians justified in seeking state intervention to assure treatment with the new, better treatment? During the informed consent process for future patients, is non-disclosure of the previous standard therapy appropriate?
>Disagreements are common in our increasingly polarized society. Viewed through the lens of interdisciplinary collaboration, we consider diverse perspectives and the role of nudges, non-disclosure of less efficacious options, and the role of state intervention. To frame the discussion and highlight these themes, we will present the case of a young child with curable cancer whose parents refused to switch their child’s current treatment to the new standard of care. We will engage the audience to share their own insights, including best practices for bridging disagreements.
What’s so special about cancer? The need for responsible opioid prescribing for cancer pain
Panelists: Travis Rieder, PhD; Vivian Altiery De Jesus, MD, MBE; Yoram Unguru, MD, MS, MA, HEC-C
Abstract: Over the last decade, the United States has fairly aggressively swung away from the rather free attitude towards opioid prescribing of the late 1990s and early 2000s towards a more restrictionist model. In response to the “opioid epidemic,” academics and medical and governing bodies made many recommendations for limiting opioid prescribing. These recommendations tended to focus on one of two groups. In the first group, many provided guidelines for prescribing opioids for acute pain; examples of this sort of recommendation can be found at Michigan OPEN (https://michigan-open.org). While other guidelines—most prominently, the CDC’s 2016 guidelines—provided recommendations for chronic, non-cancer pain.
Cancer pain, however, was often overlooked, which has left a growing population of cancer survivors without guidelines. In this panel discussion, we will explore why that is the case, and what should be done about it. Panelist #1, a pediatric hematologist/oncologist and bioethicist, will frame the discussion by providing examples of cancer and non-cancer patients, and suggest that a form of “cancer exceptionalism” concerning opioid prescribing leads to very different care in the two cases. Panelist #2, an oncology fellow and bioethicist who has written on ethical issues concerning pain management, will explore the risks to cancer patients by this exceptionalism, as it tends to limit exploration of responsible prescribing. And Panelist #3—a philosopher and bioethicist who has published widely on ethical and policy issues concerning pain and opioids—will draw on the first two panelists in order to formulate lessons for ethics and pain medicine