Bioethics and Medical Ethics Commons^™

The Application And Innovation Of Casgevy On Sickle Cell Disease, Emily Tackett, Le Thien Truc Pham, Hannah Salamie, Arin Wade, Allison Provenzale, Alexander Defranco, Ashley Jacob, Brianna Lu, Joshua Honaker, Amy Stockert

Pharmacy and Wellness Review

Casgevy, sickle cell anemia, SCA, sickle cell disease, SCD, CRISPR/Cas9, hydroxyurea, hemoglobin, Hb, l-glutamine, voxelotor, Crizanlizumab, Lyfgenia, stem cells, genetics, pharmacogenetics, pharmacogenomics

Poor Birth Outcomes Related To Cannabis Use In Pregnancy, Reese Weissenfluh, Madison Hall, Branden Kadlubowski, Makayla Eversole, Elizabeth Clary, Layla Dials, Brenna Hissong, Brianna Lu, Joshua Honaker, Manoranjan D'Souza

Pharmacy and Wellness Review

Pregnancy, a period of dynamic physiological changes, necessitates careful consideration of external influences on maternal and fetal health. Despite increasing legalization and prevalence, the impact of cannabis use during gestation remains a topic of significant concern and investigation.

Recent studies have shed light on the consequences of in utero cannabis exposure, encompassing both fetal and maternal outcomes. Notably, several studies have identified associations between cannabis exposure during pregnancy and adverse fetal outcomes, including small-for-gestational-age birth, altered neurodevelopment, preterm birth, and increased risk of neonatal morbidity. Evidence to date underscores the urgent need for education, intervention, and regulatory oversight regarding cannabis …

Special Patient Populations - A Case Report Of A Jehovah’S Witness, Michael P. Mullinax, S. Jiaming Lin, Paige M. Kieper, Jake W. Vogel, Orlando Nunez Isaac

Advances in Clinical Medical Research and Healthcare Delivery

This case report describes a Jehovah’s Witness patient with a life-threatening exacerbation of chronic anemia, warranting blood transfusion. This case highlights the complex medical management and ethical considerations encountered when treating special patient populations. Moreover, this case illustrates the delicate balance that healthcare providers must maintain when delivering necessary medical interventions to patients with competing religious beliefs.

Incidence And Survival Of Children And Adolescents With Wilms Tumor, United States, 2001-2020, Andres F Espinoza, Ekene Onwuka, David A Siegel, Shifan Dai, Sanjeev A Vasudevan, Michael E Scheurer, Philip J Lupo

Center for Medical Ethics and Health Policy Staff Publications

Background: Wilms tumor (WT) is the most common pediatric malignancy of the kidney. Past studies describing WT incidence and survival used surveillance data with < 30% of the US population. We evaluated differences in WT incidence and survival comparing demographic groups and tumor characteristics.

Methods: We analyzed new cases of WT among patients aged < 20 years at diagnosis by using incidence data from US Cancer Statistics (USCS) for 2003-2020 and 5-year relative survival (RS) data from the National Program of Cancer Registries (NPCR) for 2001-2019. To assess incidence trends, average annual percent change (AAPC) was calculated by using joinpoint regression. Relative survival (RS) and all-cause survival were calculated overall and by demographic and clinical variables.

Results: During 2003-2020, 8218 cases of WT were reported in USCS, which represented an age-adjusted incidence rate of 5.7 cases per million. Rates were the highest among females (6.3), children aged 0-4 years (17.2), and non-Hispanic Black patients (7.1). Overall, trends remained stable (AAPC = -0.4, 95% CI: -1.4 to 0.4). Among 7567 cases of WT in NPCR, 5-year RS was 92.6%. Patients with the lowest …

Figg At 5: An Update On Us Public Perspectives On Forensic Investigative Genetic Genealogy Five Years After Its Introduction To Criminal Investigations, Christi J Guerrini, Jill O Robinson, Mohamed I Elsaid, Whitney Bash Brooks, Ariel Levchenko, Stephanie M Fullerton, Sara Huston, Norah L Crossnohere, John F P Bridges, Jacklyn M Dahlquist, Louiza Kalokairinou, Diana Madden, Cece Moore, Amy L Mcguire

Center for Medical Ethics and Health Policy Staff Publications

In 2018, after law enforcement announced it had used a technique called forensic investigative genetic genealogy (FIGG) to identify the Golden State Killer, we conducted a U.S. general population survey and found most respondents supported using FIGG to solve violent crimes. Since then, FIGG has helped close hundreds of criminal cases, but it also has weathered controversies. On FIGG's fifth anniversary, we conducted an expanded, follow-up survey with U.S.-based participants to determine if public opinion had changed and found continued support for FIGG across most applications. The same proportion (91 %) of respondents in the 2018 and 2023 surveys endorsed …

Improving Individualized Rhabdomyosarcoma Prognosis Predictions Using Somatic Molecular Biomarkers, Mark Zobeck, Javed Khan, Rajkumar Venkatramani, M Fatih Okcu, Michael E Scheurer, Philip J Lupo

Center for Medical Ethics and Health Policy Staff Publications

Purpose: Molecular markers increasingly influence risk-stratified treatment selection for pediatric rhabdomyosarcoma (RMS). This study aims to integrate molecular and clinical data to produce individualized prognosis predictions that can further improve treatment selection.

Methods: Clinical variables and somatic mutation data for 20 genes from 641 patients with RMS in the United Kingdom and the United States were used to develop three Cox proportional hazard models for predicting event-free survival (EFS). The Baseline Clinical (BC) model included treatment location, age, fusion status, and risk group. The Gene Enhanced 2 (GE2) model added TP53 and MYOD1 mutations to the BC predictors. The Gene …

Revisiting What Constitutes A Neglected Tropical Disease?, Paul J Brindley, Peter J Hotez, Shaden Kamhawi

Center for Medical Ethics and Health Policy Staff Publications

PLOS Neglected Tropical Diseases (PLOS NTDs) publishes research devoted to pathogenesis and other clinical aspects, epidemiology, prevention, diagnosis, treatment, and control of the neglected tropical diseases (NTDs), as well as work relevant to public health policy. We define NTDs as poverty-promoting infectious diseases that can negatively impact the quality of life in rural areas and poor urban areas of low- and middle-income countries but which can also affect specific communities within high-income countries. The poverty-inducing effects of the NTDs operate by impairing child health and development, pregnancy outcomes for both mother and child, worker productivity, and quality of life. The …

Ethical Governance For Genomic Data Science In The Cloud, Vasiliki Rahimzadeh, Sarah C Nelson, Adrian Thorogood, Jonathan Lawson, Stephanie M Fullerton

Center for Medical Ethics and Health Policy Staff Publications

Cloud platforms offer distinct advantages, but questions remain about how to ethically and efficiently manage human genomic data in the cloud. Data governance needs to be adapted to ensure transparency and security for research participants, as well as equitable and sustainable access for researchers.

Longitudinal Phage-Bacteria Dynamics In The Early Life Gut Microbiome, Michael J Tisza, Richard E Lloyd, Kristi Hoffman, Daniel P Smith, Marian Rewers, Sara J Javornik Cregeen, Joseph F Petrosino

Center for Medical Ethics and Health Policy Staff Publications

Microbial colonization of the human gut occurs soon after birth, proceeds through well-studied phases and is affected by lifestyle and other factors. Less is known about phage community dynamics during infant gut colonization due to small study sizes, an inability to leverage large databases and a lack of appropriate bioinformatics tools. Here we reanalysed whole microbial community shotgun sequencing data of 12,262 longitudinal samples from 887 children from four countries across four years of life as part of the The Environmental Determinants of Diabetes in the Young (TEDDY) study. We developed an extensive metagenome-assembled genome catalogue using the Marker-MAGu pipeline, …

Resilience And Coping: A Qualitative Analysis Of Cognitive And Behavioral Factors In Adults With Osteogenesis Imperfecta, Hannah E Cho, Whitney S Shepherd, Gianna M Colombo, Andrew D Wiese, W Conor Rork, Kristin M Kostick, Dianne Nguyen, Members Of The Bbdc, Chaya N Murali, Marie-Eve Robinson, Sophie C Schneider, Justin H Qian, Brendan Lee, V Reid Sutton, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Purpose: The aim of this qualitative study was to investigate resilience among adults with Osteogenesis Imperfecta (OI).

Materials and methods: Semi-structured interviews were conducted with 15 adults with OI. Transcripts were coded and subsequently abstracted, yielding themes specific to resilience and coping. Interview guides covered broad topics including pain challenges specific to OI, mental health issues related to OI, and priorities for future interventions for individuals with OI.

Results: Participants described resilience in the context of OI as the ability to grow from adversity, adapt to challenges resulting from OI-related injuries, and find identities apart from their condition. Psychological coping …

Life After, John C. Lyden

Journal of Religion & Film

This is a film review of Life After (2025), directed by Reid Davenport.

Exploring Medical Assistance In Dying: A Review Article, David Pfrimmer

Consensus

No abstract provided.

Fairs - A Framework For Evaluating The Inclusion Of Sex In Clinical Algorithms, Katherine E Goodman, Jennifer Blumenthal-Barby, Rita F Redberg, Diane E Hoffmann

Center for Medical Ethics and Health Policy Staff Publications

No abstract provided.

Gut Microbial Changes Associated With Obesity In Youth With Type 1 Diabetes, Heba M Ismail, Dimuthu Perera, Rabindra Mandal, Linda A Dimeglio, Carmella Evans-Molina, Tamara Hannon, Joseph Petrosino, Sara Javornik Cregeen, Nathan W Schmidt

Center for Medical Ethics and Health Policy Staff Publications

Context: Obesity is prevalent in type 1 diabetes (T1D) and is problematic with higher risk for diabetes complications. It is unknown to what extent gut microbiome changes are associated with obesity and T1D.

Objective: This work aimed to describe the gut microbiome and microbial metabolite changes associated with obesity in T1D. We hypothesized statistically significant gut microbial and metabolite differences in lean T1D youth (body mass index [BMI]: 5%-< 85%) vs those with obesity (BMI: ≥95%).

Methods: We analyzed stool samples for gut microbial (using metagenomic shotgun sequencing) and short-chain fatty acid (SCFA) differences in lean (n = 27) and obese (n = 21) T1D youth in …

Moral Distress In Secondary School Athletic Trainers, Matthew J. Drescher, Matthew J. Rivera, Lindsey E. Eberman

Internet Journal of Allied Health Sciences and Practice

Moral distress is prevalent in healthcare and prolonged moral distress is directly linked to feelings of burnout and intent to leave the profession. Moral distress has been examined in other healthcare professions, including physician practice and nursing, but not in athletic training. Due to their likelihood to be isolated and have high patient loads, secondary school athletic trainers (SSATs) may experience moral distress. This study aimed to examine the experiences and perceptions of moral distress in SSATs. SSATs were recruited via email through the Athletic Training Locations and Services (ATLAS) database. A total of 603 SSATs completed the survey and …

A Caution Against Customized Ai In Healthcare, Kristin M Kostick-Quenet

Center for Medical Ethics and Health Policy Staff Publications

This article critiques the shift towards personalized AI in healthcare and other high-stakes domains, cautioning that without careful deliberation, customized AI systems can compromise the diversity and reach of human knowledge by restricting exposure to critical information that may conflict with users' preferences and biases. Customized AI should be applied with caution and intention where access to a wide and diverse range of perspectives is essential for impartial, informed decision making.

Us Military Veterans’ Perceived Concordance With Their Providers Regarding Persistent Physical Symptoms Prospectively Predicts Satisfaction With Care And Adherence To Care Plans, L Alison Phillips, Laura M Lesnewich, Katharine Bloeser, Yong Lin, Rachel L Boska, Justeen K Hyde, Peter J Bayley, Helena K Chandler, Matthew J Reinhard, Susan L Santos, Rachel Stewart, Drew A Helmer, Lisa M Mcandrew

Center for Medical Ethics and Health Policy Staff Publications

Background: Medically unexplained, persistent physical symptoms and syndromes are commonly seen in primary care. These are debilitating for patients and difficult to treat, causing frustration for patients and providers.

Purpose: This study investigates how well US military veterans with multiple persistent physical symptoms (PPS), called Gulf War illness (GWI), agree with their healthcare providers about their illness. This agreement, called perceived concordance, is hypothesized to influence veterans' satisfaction with care, adherence to care plans, and disability levels.

Methods: Participants were 230 veterans with GWI deployed to the 1990-1991 Gulf War who were recruited from Veteran Affairs primary care and War …

Does Holding Healthcare Providers Accountable For Every Mistake Improve Patient Safety, Or Does It Hinder Open Reporting And Learning?, Amir Arshia Emam Jomeh, Eleanor Roy

Journal of Health Ethics

Medical errors are a major cause of death and harm in healthcare, yet most go unreported due to fear of punishment. This essay explores whether holding healthcare workers fully accountable for every mistake improves safety or creates a harmful blame culture. Using the case of Dr. Hadiza Bawa-Garba, it shows how individual punishment can overlook deeper system failures, such as staff shortages and poor communication. The essay compares this with Denmark’s non-punitive reporting system, which encourages healthcare professionals to report errors without fear, leading to real improvements in patient safety. Blame cultures, on the other hand, discourage openness and violate …

Who Should Be Held Accountable In Technology-Induced Medical Errors? Evaluating The Roles Of Healthcare Providers, Technology Developers, And Hospital Systems, Eleanor Roy, Amir Arshia Emam Jomeh

Journal of Health Ethics

The integration of technologies such as artificial intelligence, electronic health records, and automated diagnostic systems has significantly altered clinical practice. While these tools enhance efficiency and diagnostic accuracy, they have also introduced new forms of medical error, raising complex questions about responsibility. This article examines the ethical dimensions of accountability in technology-induced harm by evaluating the roles of healthcare providers, technology developers, and hospital systems. Drawing on the four pillars of medical ethics; autonomy, beneficence, non-maleficence, and justice, it explores the overlapping responsibilities of each stakeholder and the challenges that arise when harm occurs. Through analysis of the Therac-25 radiation …

Capacity Determination And False Beliefs: A Case Study On The Application Of Evaluation Frameworks With Resulting Recommendations, Dessislava S. Fessenko

Journal of Health Ethics

False beliefs may interfere with medical decision-making by casting doubt about the patient’s decision-making capacity. The latter is typically assessed against a set of established criteria requiring the patient’s cognitive aptness for self-governance. I argue that a capacity determination solely based on these criteria may prove insufficient when the patient entertains false beliefs. I further illustrate how alternative evaluation frameworks are better suited to assess the impact of false beliefs on the patient’s state of mind, values, overall worldviews and pursuit of wellbeing, and therefore, for the actual moral significance of false beliefs. It appears prudent to integrate these alternative …

The Impact Of Medical Ethics On Healthcare Professionals And Patient Outcomes In Resource-Poor Settings: A Focus On Ethical Challenges And Solutions, Amir Arshia Emam Jomeh, Eleanor Roy

Journal of Health Ethics

Background: Developing countries face major challenges to their healthcare system such as resource scarcity and reduced patient autonomy amongst women. The strained healthcare system often leads doctors to compromise ethical protocols and reduce their standard of care.

Aims: To explain why medical ethics are important for healthcare professionals in the context of resource-poor countries.

Findings: Many healthcare professionals lack adequate knowledge of medical ethics in developing countries. In addition, doctors make difficult decisions such as patient prioritization and resource allocation without clear ethical guidance or protocols. Women also face diminished patient autonomy in developing countries, which has been linked to …

Should Medical Assisted Suicide Be Legalised Worldwide? A Critical Examination Of Ethical Justifications And Challenges In Contemporary Healthcare, Eleanor Roy, Amir Arshia Emam Jomeh

Journal of Health Ethics

The legalisation of medical assisted suicide (MAS) is a complex ethical issue at the intersection of autonomy, non-maleficence, and justice. This paper critically examines whether MAS should be legalised worldwide, evaluating ethical justifications, regulatory challenges, and societal risks. A primary argument in favour of MAS is patient autonomy, allowing individuals to make informed end-of-life decisions, particularly in cases of terminal illness and intractable suffering. MAS is also framed as a harm-reduction strategy, preventing patients from resorting to unsafe methods of suicide.

However, ethical concerns regarding coercion, socioeconomic disparities, and the "slippery slope" effect present significant opposition. Case studies from jurisdictions …

The Ethical Justification Of Application Of Long-Acting Reversible Contraception In Patients With Intellectual Disabilities, Kelly Savitri

Journal of Health Ethics

This paper explores the ethical justification for the use of Long-Acting Reversible Contraception (LARC) in patients with intellectual disabilities, particularly in scenarios where patients cannot provide informed consent. The tension between respecting autonomy and ensuring beneficence presents a complex challenge for healthcare providers. Drawing on historical context, current reproductive justice issues, and evolving societal attitudes towards individuals with intellectual disabilities, this essay argues for a semi-discrete model that recognizes the need to prioritize patient health and safety while valuing their autonomy. By examining the implications of both past and present practices, this study highlights the necessity for healthcare providers to …

Transformative Experiences, Anticipatory Regret, And Informed Consent, Elizabeth Lanphier, Shannon Fyfe

Scholarly Articles

Regret risk is not consistently part of information sharing within informed consent. Yet two kinds of decisions that often invoke concerns about future regret, abortion and sterilization, raise considerations for the role of regret in clinical decision-making and informed consent, particularly regarding decisions about potentially transformative experiences. We distinguish between first-personal and second-personal anticipatory regret and argue that first-personal anticipatory regret can play a productive role, but second-personal anticipatory regret can function in ways that are pernicious. Introducing second-personal anticipatory regret into medical informed consent processes is, we argue, not only not required for informed medical decision-making, but impermissible within …

Reproductive Autonomy In Immunological Intervention: Ethical Boundaries In Maternal-Fetal Immune Therapy, Marium Z. Rizvi

Journal of Health Ethics

Recent advances in immunology have broken barriers in reproductive medicine through immune-modulating therapies that support fertility and pregnancy. Treatments such as intravenous immunoglobulin (IVIG) and intralipid infusions are increasingly offered to patients with Recurrent Implantation Failure (RIF) or Recurrent Pregnancy Loss (RPL), conditions that result in miscarriages and failed IVF treatments (Pillarysetti et al., 2023). Maternal-fetal immunology reveals a delicate interplay between immune tolerance and defense: the maternal system must accept a genetically foreign fetus while preserving immunological protection. Disruptions in this balance are implicated in implantation disorders and pregnancy failure. As a result, immune-based therapies have emerged as promising …

Poner En Práctica Las Regulaciones Federales: Habilitando A Los Pacientes Dominio Limitado Del Inglés, Caitlyn Gailey

World Languages and Cultures Senior Capstones

This paper examines the gaps in the U.S. healthcare system that affect the Hispanic community, focusing on language barriers and cultural competence. It highlights the challenges faced by Limited English Proficiency (LEP) patients, who may struggle with medical terminology, leading to misdiagnosis and improper treatment. The paper advocates for culturally sensitive language services, including qualified interpreters, translated documents and signage in order to improve communication, patient satisfaction, and reduce medical errors. It calls for systemic changes to ensure equitable care for all patients, regardless of language or cultural background.

Los Inmigrantes Indocumentados Y Su Pelea Para La Salud Medica En Los Estados Unidos, Alejandro Del Rello

World Languages and Cultures Senior Capstones

This essay explores the critical issue of healthcare access for undocumented immigrants in the United States. Despite contributing significantly to the economy through labor and taxes, undocumented immigrants face systemic barriers to medical care, including lack of insurance, fear of deportation, and economic troubles. These barriers result in untreated illnesses, mental health struggles, and increased use of emergency services, which generate higher long-term costs. The paper argues for inclusive healthcare policies, such as Medicaid expansion and protections for patient privacy, to improve public health, reduce disparities, and enhance economic stability. Drawing from U.S. and international examples, the essay demonstrates that …

El Uso De Las Prácticas Curativas No Occidentales En Lugar De Y Dentro De La Cultura Biomédica, Lynda Gulledge

World Languages and Cultures Senior Capstones

This paper explores the difficulties that the Hispanic community faces when accessing healthcare in the United States, which emphasizes the use of biomedical culture. Topics such as cultural and linguistic barriers, past and present healthcare policies, and the use of non-Western medical practices are examined. Furthermore, this paper explores the history and use of curanderismo as an accessible and culturally appropriate form of healthcare. Lastly, the integration and acknowledgement of curanderismo in biomedical culture is explored and encouraged in order to create a more holistic healthcare experience for the Hispanic community.

Neurosurgical Praxis Guidelines During The Covid-19 Outbreak. Consensus-Based On Currently Available Literature., José Antonio Soriano Sánchez, Bárbara Nettel Rueda, José Alberto Israel Romero Rangel, Armando Alpizar Aguirre, Miguel Ángel Andrade-Ramos, Ulises García Dr., Diego Mendez Rosito, Jorge A. Santos, Sara Patricia Pérez Reyes, Julian Eduardo Soto Abraham, Jose E. Valerio Pascua, Marco Antonio Barajas Romero, Eduardo Díaz Juárez, Alma Griselda Ramírez Reyes, Maria Elena Gonzalez, Claudia Katiutska González Valdez, Félix Domínguez Cortinas, Noé Santiago Ramírez, Tenoch Herrada Pineda, Manuel Eduardo Soto García, Edgar Nathal Vera, Gustavo Melo Guzmán

Archives of Neurosurgery

INTRODUCTION: The World Health Organization recommended several strategies to contain the COVID-19 pandemic, including optimization of care for all patients, especially the seriously ill. Given the strain, the pandemic has posed on healthcare systems around the world, many neurosurgical associations have provided triage recommendations for patients to save resources for the pandemic. We aimed to provide practical recommendations based on specific illnesses requiring surgical procedures commonly performed by neurosurgeons on a life-threatening basis of patient illness. We consider this guideline will help neurosurgeons for the appropriate triage of patients on a daily-situation basis during this pandemic.

METHODS: The Mexican Society …

All About Euthanasia, Bhavna Bangalore

STEM for Success Showcase

The infographic details the practice of euthanasia. It explains euthanasia's history, legality, and process. The infographic also mentions way to support terminally ill patients that choose to undergo the procedure.