Bioethics and Medical Ethics Commons^™

On Minimizing Risk And Harm In The Use Of Psychedelics, Jules Evans, Marc Aixalà, Brian T Anderson, William Brennan, Rebecka Bremler, Joost J Breeksema, Lisa Burback, Abigail E Calder, Robin L Carhart-Harris, Katherine Cheung, Neşe Devenot, Ingmar Gorman, Jakub Greń, Peter S Hendricks, Brian Holoyda, Edward Jacobs, Joy Krecké, Daniel J Kruger, David Luke, Tomislav Majić, Amy L Mcguire, Nicky J Mehtani, David S Mathai, Kristin Nash, Tehseen Noorani, Roman Palitsky, Oliver C Robinson, Otto Simonsson, Elin Stahre, Michiel Van Elk, David B Yaden

Center for Medical Ethics and Health Policy Staff Publications

Objective: This article outlines recommendations from 30 psychedelic researchers on how to create a better psychedelic safety net.

Methods: A survey of 30 psychedelic researchers asked them to identify key critical research gaps around psychedelic harm and safety.

Results: The critical research gaps identified by the authors included defining the main types of psychedelic harm, the predictors of those harms, and the most effective way to treat those harms. They also call for better support for those experiencing post-psychedelic difficulties, including better online information, peer support groups, affordable therapy, and psychiatric consultation and medication. Finally, the authors call for better …

Reframing Stigma In Tourette Syndrome: An Updated Scoping Review, Kelly Pring, Melina Malli, Brandy W Hardy, Stephen R Rapp, Eric A Storch, Jonathan W Mink, Jaclyn M Martindale

Center for Medical Ethics and Health Policy Staff Publications

Persistent tic disorders (PTD) such as Tourette's syndrome (TS) are common childhood-onset neurodevelopmental disorders. Stigmatization of individuals with these disorders remains an ongoing problem. The purpose of this scoping review is to serve as an updated review of the research regarding stigmatization in youth with PTD since the publication of the original systematic review about this topic in 2016. The electronic databases Embase, Web of Science, PubMed, PsycINFO, and CINAHL were searched. Of the 4751 initial articles screened after removing duplications, 47 studies met the inclusion criteria. The studies were examined under the social-ecological stigmatization model, which helps categorize stigmatization …

Advancing Medical Applications Of Cancer Nanotechnology: Highlighting Two Decades Of The Nci's Nanotechnology Characterization Laboratory Service To The Research Community, Rachael M Crist, Yechezkel Barenholz, Ahuva Cern, Kate N Clark, Pieter R Cullis, Cheryl Dean, Neil Desai, Mauro Ferrari, Matthieu Germain, Carmen A Giacomantonio, Emma Grabarnik, Piotr Grodzinski, Atara Hod, Barry E Kennedy, Ruvanthi N Kularatne, Glen S Kwon, Emmanuel Loeb, Erin B Noftall, Len Pagliaro, Morteza Rasoulianboroujeni, Alexander Roth, Darren Rowles, Kulbir Singh, Nicole F Steinmetz, Zhanna Yehtina, Yao Zhang, Daniel Zilbersheid, Jeffrey D Clogston, Stephan T Stern, Marina A Dobrovolskaia

Center for Medical Ethics and Health Policy Staff Publications

The Nanotechnology Characterization Laboratory (NCL) is a US federally funded resource providing characterization and expertise to the cancer nanomedicine research community. Founded as a formal partnership among the US National Cancer Institute (NCI), the US Food and Drug Administration (FDA), and the US National Institute of Standards and Technology (NIST), the NCL has spent two decades developing a one-of-a-kind service with broad multidisciplinary expertise to meet the needs of a rapidly evolving drug development field. To mark the 20th anniversary of the lab's founding, the NCL hosted a symposium to highlight the achievements of the cancer nanomedicine field, showcase novel, …

Patient-Centric Federated Learning: Automating Meaningful Consent To Health Data Sharing With Smart Contracts, Kristin M Kostick-Quenet, Marcelo Corrales Compagnucci, Mateo Aboy, Timo Minssen

Center for Medical Ethics and Health Policy Staff Publications

Federated Learning (FL) promises to enhance data-driven health research by enabling collaborative machine learning across distributed datasets without direct data exchange. However, current FL implementations primarily reflect the data-sharing interests of institutional controllers rather than those of individual patients whose data are at stake. Existing consent mechanisms-like broad consent under HIPAA or explicit consent under the GDPR-fail to provide patients with control over how their data is used. This article explores the integration of smart contracts (SCs) into FL as a mechanism for automating, enforcing, and documenting consent in data transactions. SCs, encoded in decentralized ledger technologies, can ensure that …

When Families Bridge The Research-Clinical Divide: An Exploration Of Values Regarding Cascade Screening In Genomic Research, Katherine E Bonini, Lauren R Desrosiers-Battu, Ann Katherine M Foreman, Nuriye N Sahin-Hodoglugil, Mary A Majumder, Candice R Finnila, Stephanie A Kraft, Laura M Amendola, Eimear E Kenny, Stephanie M Fullerton, Sara L Ackerman, Benjamin S Wilfond, Amy L Mcguire, Hadley Stevens Smith

Center for Medical Ethics and Health Policy Staff Publications

Purpose: Genetic results are important for both patients and their biological relatives. However, cascade screening (CS) uptake is low, especially when testing occurs through research programs and not clinical care. Ethical guidance is needed for CS implementation when individuals receive clinical genetic results through research.

Methods: We conducted focus groups with 3 groups of individuals in the Clinical Sequencing Evidence-Generating Research Consortium: clinicians, patient representatives, and scholars of the ethical, legal, and social implications of genomics. We used inductive thematic and comparative analyses to analyze data within and across the groups.

Results: All participants (n = 27) agreed that …

Deep Brain Stimulation For Childhood Treatment-Resistant Obsessive-Compulsive Disorder: Mental Health Clinician Views On Candidacy Factors, Ilona Cenolli, Tiffany A Campbell, Natalie Dorfman, Meghan Hurley, Jared N Smith, Kristin Kostick-Quenet, Eric A Storch, Jennifer Blumenthal-Barby, Gabriel Lázaro-Muñoz

Center for Medical Ethics and Health Policy Staff Publications

Introduction: Deep brain stimulation (DBS) is approved under a humanitarian device exemption to manage treatment-resistant obsessive-compulsive disorder (TR-OCD) in adults. It is possible that DBS may be trialed or used clinically off-label in children and adolescents with TR-OCD in the future. DBS is already used to manage treatment-resistant childhood dystonia. Evidence suggests it is a safe and effective intervention for certain types of dystonia. Important questions remain unanswered about the use of DBS in children and adolescents with TR-OCD, including whether mental health clinicians would refer pediatric patients for DBS, and who would be a good candidate for DBS.

Objectives: …

Ethical, Legal, And Social Issues In Metaverse-Enabled Healthcare, Kristin M Kostick-Quenet, Vasiliki Rahimzadeh

Center for Medical Ethics and Health Policy Staff Publications

Metaverse is heralded by some as the next iteration of the internet. It offers three-dimensional, immersive virtual spaces, where users, represented as avatars, can synchronously work, play, interact, and transact. Initially developed within the realm of massive multiplayer online role-playing games, the metaverse now extends into sectors such as music, entertainment, retail, real estate, and, more recently, healthcare. Users engage in the metaverse using augmented reality or virtual reality (AR/VR) headsets that interoperate with other sensory devices to integrate biofeedback and multimodal data streams.1 In this article, the authors offer a conceptual synthesis and anticipatory policy analysis grounded in …

Recognizing And Responding To Moral Distress: Using Transformational Leadership To Increase Nurse Leader Thriving, Miriam Dowling-Schmitt

DNP Scholarly Projects

Background: Moral distress, burnout, and compassion fatigue in acute care nurses has increased significantly since the Covid-19 pandemic and has been associated with high levels of nursing turnover and increased costs to healthcare systems. Nurse leaders at the study organization had never received education on recognizing and responding to moral distress. Nursing engagement scores were low at the study organization in the areas of leadership support and well-being investment in nurses.

Problem Description: Between 2017 and 2021 job satisfaction for nurses with direct patient care responsibilities decreased in 20 of 21 categories according to the Bureau of Health Workforce. High …

Investigation Of The Relationship Between Nursing Students’ Ethical Sensitivities And Care Behaviors, Pınar Yel, Neriman Zengin, Aysenur Çetin Üçeriz

Makara Journal of Health Research

Background: Care encompassing ethical and legal aspects is essential for nursing and involves actions that aim to improve individual well-being. In this study, we assessed the relationship between nursing students’ ethical sensitivity and care behaviors.

Methods: This descriptive study included 191 students enrolled at a foundation university who consented to participate. Relevant data were gathered by using the Descriptive Information Form, Ethical Sensitivity Scale Adapted for Nursing Students, and Caring Behaviors Scale-24. Surveys were conducted face-to-face with the attending students and via Google Forms for the non-attending students.

Results: The mean total score of the ethical sensitivity …

Challenges To Reproductive Justice: An Ethical Analysis Of Reproductive Technologies And Disparities, Courtney Brenner

Electronic Theses and Dissertations

This dissertation analyzes the Reproductive Justice Framework to describe possible solutions to the ethical challenges related to reproductive healthcare disparities. Various frameworks to support reproductive equity fail to address the challenges marginalized individuals face in accessing reproductive health services. The four ethical principles of autonomy, beneficence, nonmaleficence, and justice serve as foundational tools to support reducing these disparities. This dissertation uses the Reproductive Justice Framework to analyze the unequal distribution of harms among marginalized women. It highlights how access to care, such as Assisted Reproductive Technologies (ART), is disproportionately inaccessible to marginalized women. Then, it discusses the relationship between marginalized …

Ethical Considerations In The Diagnosis And Treatment Of Autism Spectrum Disorder, Ferdinand Okafor

Electronic Theses and Dissertations

This dissertation is an ethical response to the ethical issues in the assessment, diagnosis, and treatment of autism. The problems that underlie the discussion are misconception about autism and Autistics. The misconception about autism and Autistics lead to misinterpretation of the neurological functioning, cognition, and the behaviors of Autistics. Consequently, it influences the approach and model of care in the assessment, diagnosis, and treatment of autism. Currently, the analytic approach and biomedical model of disease are applied in the assessment, diagnosis, and treatment of autism. The motive of the analytic approach and biomedical care is to cure autism. The consequence …

Muslim Spirituality As A Foundation In Bioethics For Patient Encounters In Health Care, Sara Rahman

Electronic Theses and Dissertations

Spirituality plays a major role in decision making for individuals with faith-based values. There is often hesitation to discuss the role of faith in healthcare as a core value and coping mechanism. The growing cultural diversity amongst patients and physicians has increased the need to understand eastern religious principles and incorporate them into bioethical guidance. Even as the 2nd largest religion in the world, Islam has not been sufficiently integrated into religious bioethics in western medicine. Muslim populations of patients and physicians are growing, increasing the need for better understanding of how Islamic principles impact healthcare delivery. Although Islamic law …

The Ethical Contributions Of Nudges To Healthcare, Ian Doherty

Electronic Theses and Dissertations

“The Ethical Contributions of Nudges to Healthcare” examines the ethical use, implications, and rationale for using nudges in healthcare. The use of nudges in healthcare are being empirically examined. This leaves much to be examined from the ethical perspective. To examine the ethical perspective, the dissertation lays out how nudges interact with and enhance the biomedical principles of autonomy and beneficence. The dissertation then turns to clinical ethics. Nudges, more specifically the framing effect, are paired with trust in the patient-physician relationship to discern how best to aid a patient in his or her medical decision-making. The dissertation then investigates …

The Ethics Of Involuntary Psychiatric Hospitalization: A Comprehensive Analysis Of Policies, Practice, And Ethical Oversight, Mariah Chobany

Electronic Theses and Dissertations

As a specialized field of medicine, psychiatry presents unique ethical challenges and dilemmas distinct from other medical disciplines. A particularly complex aspect of psychiatric care involves the involuntary treatment of patients who may be unable to make informed decisions about their care or participation in research due to the debilitating effects of their psychiatric condition. This presents a significant challenge for providers and researchers, particularly concerning capacity issues and the informed consent process. Despite the intricacies and complexities of ethical dilemmas in psychiatric treatment and research, there is a notable lack of comprehensive guidance in policies and practices on addressing …

From Policymaking To Legislation, The Need For A Secular Turn In Bioethics Discourse To Uphold, As A Function Of The Greater Good, Policy For Legislation Of Medically Aided Dying In The United States Of America, Scott Dyer

Electronic Theses and Dissertations

A person’s right to self-determination is a central aspect of living in a democratic nation. Similarly, decisions regarding medical care are generally left up to the patient to determine what treatment is or is not appropriate. The same should apply to end-of-life care as well, especially when a patient desires to hasten his or her death via medically aided dying. However, due to the illegality of medically assisted dying in most of the United States, the right to a self-determined death is not possible for the majority of American citizens. One of the main reasons for this is due to …

Learning To Be An Autistic Therapist: Personal Steps Towards An Autism-Affirming Psychotherapy, Sasha D. Strong

Ought: The Journal of Autistic Culture

How can Autistic therapists understand and support themselves, and how can this help them support their clients? In this paper, I recount my personal journey of healing and growth as an Autistic psychotherapist, 16 months after self-identification. Here is an overview of conceptual frameworks from #actuallyautistic authors, critical theory, queer theory, and social justice that I have found helpful. I also share some of the therapeutic and wellness approaches that have been important to me, including mindfulness and bodyfulness. Organic knowing has been pivotal for me in discerning between masking and aliveness, and regaining a choice around masking behaviors. This …

Health Equity Innovation In Precision Medicine: Data Stewardship And Agency To Expand Representation In Clinicogenomics, Patrick J Silva, Vasiliki Rahimzadeh, Reid Powell, Junaid Husain, Scott Grossman, Adam Hansen, Jennifer Hinkel, Rafael Rosengarten, Marcia G Ory, Kenneth S Ramos

Center for Medical Ethics and Health Policy Staff Publications

Most forms of clinical research examine a very minute cross section of the patient journey. Much of the knowledge and evidence base driving current genomic medicine practice entails blind spots arising from underrepresentation and lack of research participation in clinicogenomic databases. The flaws are perpetuated in AI models and clinical practice guidelines that reflect the lack of diversity in data being used. Participation in clinical research and biobanks is impeded in many populations due to a variety of factors that include knowledge, trust, healthcare access, administrative barriers, and technology gaps. A recent symposium brought industry, clinical, and research participants in …

The Living Document, Camilla Lyckblad

Proceedings from the Document Academy

This physical interactive art piece of thesis research in progress aims to deepen comprehension of information behavior in clinical contexts, where the contemporary medical record, with its increasing digital properties such as open record access for patients, can be viewed as an entity that both listens and influences. The art piece sheds light on the complex dynamics of truth within clinical environments, where patients and healthcare professionals might selectively disclose or withhold information, aiming to protect both patient, clinician and the information itself. Set within a small, dimly lit room, the exhibit features eight aged medical records, each inscribed with …

The Living Document: Medical Records As A Malleable Presence, Camilla Lyckblad

Proceedings from the Document Academy

Understanding why individuals might safeguard information or keep secrets in working documents such as medical records is essential for the development of good quality care, fostering an environment where both patients and staff feel secure to part with sensitive information, encouraging more honest and open communication as well as improved quality of care. This ongoing research aims to deepen comprehension of information behavior in clinical contexts, where the contemporary medical record, with its increasing properties such as open record access for patients, can be viewed as an entity that both listens and influences. This examination sheds light on the complex …

Food Security And Its Impact On Hypertension In Urban Communities, Lauren M. Nobriga

Master's Projects and Capstones

The Quality Improvement Team proposed an intervention to increase enrollment in the Food Security Program, a six-month initiative that provides vouchers redeemable for fruits and vegetables. Long-term impacts of this Program include an improved food economy and enhanced patient disease management autonomy. This project aimed to increase the percentage of eligible adult medicine clinic patients enrolled in the Food Security Program by 25%, or 11 patients per month, based on the mean enrollment for the first four months of the Program (May to August) of nine patients. The intervention was based on bi-monthly performance reports, making the goal include enrolling …