Bioethics and Medical Ethics Commons^™

Patients’ And Physicians’ Beliefs And Attitudes Towards Integrating Personalized Risk Estimates Into Patient Education About Left Ventricular Assist Device Therapy, Kristin M Kostick-Quenet, Benjamin Lang, Natalie Dorfman, Jerry Estep, Mandeep R Mehra, Arvind Bhimaraj, Andrew Civitello, Ulrich Jorde, Barry Trachtenberg, Nir Uriel, Holland Kaplan, Eleanor Gilmore-Szott, Robert Volk, Mahwash Kassi, J S Blumenthal-Barby

Center for Medical Ethics and Health Policy Staff Publications

Background: Personalized risk (PR) estimates may enhance clinical decision making and risk communication by providing individualized estimates of patient outcomes. We explored stakeholder attitudes toward the utility, acceptability, usefulness and best-practices for integrating PR estimates into patient education and decision making about Left Ventricular Assist Device (LVAD).

Methods and results: As part of a 5-year multi-institutional AHRQ project, we conducted 40 interviews with stakeholders (physicians, nurse coordinators, patients, and caregivers), analyzed using Thematic Content Analysis. All stakeholder groups voiced positive views towards integrating PR in decision making. Patients, caregivers and coordinators emphasized that PR can help to better understand a …

Family Accommodation In Children And Adolescents With Misophonia, Eric A Storch, Andrew G Guzick, Johann D'Souza, Jane Clinger, Daphne Ayton, Minjee Kook, Conor Rork, Eleanor E Smith, Isabel A Draper, Nasim Khalfe, Catherine E Rast, Nicholas Murphy, Marijn Lijfijjt, Wayne K Goodman, Matti Cervin

Center for Medical Ethics and Health Policy Staff Publications

Family accommodation (e.g., reassurance, modifying routines, assisting avoidance) has not been explored among youth with misophonia but may have important clinical and intervention implications. We examined family accommodation in 102 children and adolescents with interview-confirmed misophonia and compared its frequency and content to family accommodation in 95 children and adolescents with anxiety disorders. Findings showed that family accommodation was ubiquitous in pediatric misophonia and may be even more frequent than in youth with anxiety disorders. Assisting the child, participating in misophonia-related behaviors, and modifying family routines were endorsed by more than 70% of parents of children with misophonia. Further, compared …

Ethical Concerns For Remote Computer Perception In Cardiology: New Stages For Digital Health Technologies, Artificial Intelligence, And Machine Learning, Kristin Kostick-Quenet, Jerry Estep, Jennifer S Blumenthal-Barby

Center for Medical Ethics and Health Policy Staff Publications

No abstract provided.

Public Attitudes, Interests, And Concerns Regarding Polygenic Embryo Screening, Rémy A Furrer, Dorit Barlevy, Stacey Pereira, Shai Carmi, Todd Lencz, Gabriel Lázaro-Muñoz

Center for Medical Ethics and Health Policy Staff Publications

Importance: Polygenic embryo screening (PES) is a novel technology that estimates the likelihood of developing future conditions (eg, diabetes or depression) and traits (eg, height or cognitive ability) in human embryos, with the goal of selecting which embryos to use. Given its commercial availability and concerns raised by researchers, clinicians, bioethicists, and professional organizations, it is essential to inform key stakeholders and relevant policymakers about the public's perspectives on this technology.

Objective: To survey US adults to examine general attitudes, interests, and concerns regarding PES use.

Design, setting, and participants: For this survey study, data were collected from 1 stratified …

Conscientious Objection: Understanding When And Why Primary Care Physicians Object To Providing Health Care To Transgender And Gender-Diverse Patients In An Appalachian Medical Center, Mili S. Patel, Kelley A. Jones, Laura Davisson, Elizabeth Miller, Nicole Kahn, Pamela J. Murray, Kacie M. Kidd

Journal of Appalachian Health

Introduction: Transgender and gender-diverse (TGD) individuals face barriers to accessing primary and gender-affirming care, especially in rural regions where a national shortage of medical providers with skills in caring for TGD people is further magnified. This care may also be impacted by individual providers’ strongly held personal or faith beliefs and associated conscientious objection to care.

Purpose: This study assesses the prevalence of conscientious objection to providing care and gender-affirming hormone (GAH) therapy to TGD individuals among physicians in an Appalachian academic medical center.

Methods: An anonymous, online, cross-sectional survey of physicians was distributed to resident and faculty physicians in …

Direct Implantation Of Patient Brain Tumor Cells Into Matching Locations In Mouse Brains For Patient-Derived Orthotopic Xenograft Model Development, Lin Qi, Patricia Baxter, Mari Kogiso, Huiyuan Zhang, Frank K Braun, Holly Lindsay, Sibo Zhao, Sophie Xiao, Aalaa Sanad Abdallah, Milagros Suarez, Zilu Huang, Wan Yee Teo, Litian Yu, Xiumei Zhao, Zhigang Liu, Yulun Huang, Jack M Su, Tsz-Kwong Man, Ching C Lau, Laszlo Perlaky, Yuchen Du, Xiao-Nan Li

Center for Medical Ethics and Health Policy Staff Publications

Background: Despite multimodality therapies, the prognosis of patients with malignant brain tumors remains extremely poor. One of the major obstacles that hinders development of effective therapies is the limited availability of clinically relevant and biologically accurate (CRBA) mouse models.

Methods: We have developed a freehand surgical technique that allows for rapid and safe injection of fresh human brain tumor specimens directly into the matching locations (cerebrum, cerebellum, or brainstem) in the brains of SCID mice.

Results: Using this technique, we successfully developed 188 PDOX models from 408 brain tumor patient samples (both high-and low-grade) with a success rate of 72.3% …

Reproductive Justice In Mississippi: A Call For Reform And Acknowledgement, Andie Udziela

Honors Theses

In this thesis, I apply the values of the Reproductive Justice Movement to reproductive healthcare resources in Mississippi to advocate for reproductive policy reform. I begin by navigating the historic racial discrimination in gynecology and how it manifested in Mississippi. Dr Sim’s abusive experimentation on Anarcha, Betsy, and Lucy depict how Anti-Black racism took root in gynecology and obstetrics and was later expanded on by the eugenic goals of white supremacy and the feminist movement through Margaret Sanger and the Mississippi Appendectomy. Then I discuss the current availability of reproductive care in Mississippi to low-income individuals to emphasize socioeconomic and …

A Persuasive Case Against Government Authority In End-Of-Life Decisions For Vegetative Patients, Helen Gizachew

Helm's School of Government Conference - 2021-2024

The debate over whether the government should have jurisdiction to withdraw life support from people in a vegetative state is heating up, producing a persuasive case emphasizing the need to protect human liberty and oppose government overreach in matters of life and death. The key tenet of this argument is individual autonomy, which stresses a person's freedom to make decisions about their own life and body. Giving the government the authority to decide the fate of people in vegetative states violates this basic right, setting a dangerous precedent that undermines personal liberty and self-determination. Entrusting such decisions to a bureaucratic …

Nonfinancial Conflict Of Interest In Medical Research: Is Regulation The Right Answer, Nehad Mikhael

Journal of Law and Health

Medical research plays a vital role in advancing human knowledge, developing new therapies and procedures, and reducing human suffering. Following the atrocities committed in the name of medical research by German physicians during the Nazi era, the Nuremberg trials were held, and an ethical code was created to establish the limits within which medical research can operate. Consequently, legal regimes built upon this ethical foundation to develop laws that ensure the integrity of medical research and the safety of human subjects. These laws sought to protect human subjects by minimizing conflicts of interest that may arise during the process. Furthermore, …

The Revolutionary St. Louis Insane Asylum, Julia Talbert

Undergraduate Research Symposium

Even with its grand structure on Arsenal Street towering over the city below, few residents of St. Louis and surrounding areas are aware of the grand history or even existence of the St. Louis Insane Asylum. The building is over 150 years old and was a place of hope, failure, strife, and empathy. The asylum had a large impact on St. Louis and provided revolutionary outlooks, unique perspectives, and curious therapies.

"The Relevant History And Medical And Ethical Future Viability Of Xenotransplantation", Morgan Janes

Augustana Center for the Study of Ethics Essay Contest

Xenotransplantation, the transplantation of organs or tissues from one species to another, presents a complex nexus of medical, ethical, and cultural considerations. In this article, we delve into the multifaceted landscape of xenotransplantation, beginning with a thorough examination of its relevant historical trajectory. From early experiments to recent advancements, we chart the evolution of this field, setting the stage for a nuanced discussion. We then confront the central issue: the true medical viability of xenotransplantation and the looming specter of operative risk. By scrutinizing the ethical dilemmas inherent in xenotransplantation through a multicultural lens, we illuminate the diverse perspectives that …

Harnessing Rna Technology To Advance Therapeutic Vaccine Antigens Against Chagas Disease, Chiara Mancino, Jeroen Pollet, Assaf Zinger, Kathryn M Jones, Maria José Villar, Ana Carolina Leao, Rakesh Adhikari, Leroy Versteeg, Rakhi Tyagi Kundu, Ulrich Strych, Federica Giordano, Peter J Hotez, Maria Elena Bottazzi, Francesca Taraballi, Cristina Poveda

Center for Medical Ethics and Health Policy Staff Publications

Chagas disease (CD) (American trypanosomiasis caused by Trypanosoma cruzi) is a parasitic disease endemic in 21 countries in South America, with increasing global spread. When administered late in the infection, the current antiparasitic drugs do not prevent the onset of cardiac illness leading to chronic Chagasic cardiomyopathy. Therefore, new therapeutic vaccines or immunotherapies are under development using multiple platforms. In this study, we assessed the feasibility of developing an mRNA-based therapeutic CD vaccine targeting two known T. cruzi vaccine antigens (Tc24—a flagellar antigen and ASP-2—an amastigote antigen). We present the mRNA engineering steps, preparation, and stability of the lipid …

Patient Perspectives On The Use Of Artificial Intelligence In Health Care: A Scoping Review, Sally Moy, Mona Irannejad, Stephanie Jeanneret Manning, Mehrdad Farahani, Yomna Ahmed, Ellis Gao, Radhika Prabhune, Suzan Lorenz, Raza Mirza, Christopher Klinger

Journal of Patient-Centered Research and Reviews

Purpose

Artificial intelligence (AI) technology is being rapidly adopted into many different branches of medicine. Although research has started to highlight the impact of AI on health care, the focus on patient perspectives of AI is scarce. This scoping review aimed to explore the literature on adult patients’ perspectives on the use of an array of AI technologies in the health care setting for design and deployment.

Methods

This scoping review followed Arksey and O'Malley’s framework and Preferred Reporting Items for Systematic Reviews and Meta-Analysis for Scoping Reviews (PRISMA-ScR). To evaluate patient perspectives, we conducted a comprehensive literature search using …

Evolution Of Telehealth-Its Impact On Palliative Care And Medication Management, Syed N Imam, Ursula K Braun, Mary A Garcia, Leanne K Jackson

Center for Medical Ethics and Health Policy Staff Publications

Palliative care plays a crucial role in enhancing the quality of life for individuals facing serious illnesses, aiming to alleviate suffering and provide holistic support. With the advent of telehealth, there is a growing interest in leveraging technology to extend the reach and effectiveness of palliative care services. This article provides a comprehensive review of the evolution of telehealth, the current state of telemedicine in palliative care, and the role of telepharmacy and medication management. Herein we highlight the potential benefits, challenges, and future directions of palliative telemedicine. As the field continues to advance, the article proposes key considerations for …

Abortion: Analysis Of The Bioethical And Metaphysical Standpoint, Lauren Kovarick

Richard T. Schellhase Essay Prize in Ethics

The antagonistic relationship between a mother and their unborn child creates the controversial topic of abortion. With massive moral implications and consequences associated, education on the laws and reasoning is significant to determine the direction of society. To analyze the ethics of abortion, the bioethical and metaphysical debate must be considered. With the former, the four principles of bioethics are used in healthcare practice to break down an ethical concern. On the metaphysical side, the life-status and rights of the fetus are acknowledged. With this topic, it is important not to argue in favor of one position, but instead have …

Zooming In On Justice: The Case For Virtual Bioethics Conferencing., Bruce P Blackshaw, Daniel Rodger, Daniel J Hurst

Rowan-Virtua School of Osteopathic Medicine Departmental Research

No abstract available.

We Are Not Okay: Moral Injury And A World On Fire, Keisha S Ray

Faculty and Staff Publications

No abstract provided.

Moral Distress And Moral Injury In Military Healthcare Clinicians: A Scoping Review, Melissa A. Wilson, Amy Shay, J. Irene Harris, Nicole Faller, Timothy J. Usset, Angela Simmons

Nursing Faculty Publications

Introduction: Healthcare clinicians are often at risk of psychological distress due to the nature of their occupation. Military healthcare providers are at risk for additional psychological suffering related to unique moral and ethical situations encountered in military service. This scoping review identifies key characteristics of moral distress and moral injury and how these concepts relate to the military healthcare clinician who is both a care provider and service member.

Methods: A scoping review of moral distress and moral injury literature as relates to the military healthcare clinician was conducted on the basis of the Joanna Briggs Institute scoping review framework. …

Establishing Consent: The Role Of Women Representatives In Passing Informed Consent Laws, Sophia Stockham

Department of Political Science: Dissertations, Theses, and Student Research

What predicts the adoption of informed consent laws for pelvic exams within the United States? As of January 2023, 22 states have adopted informed consent laws for pelvic examinations on women, with eleven being under Democratic control, six being Republican control, and five with divided control between the legislature and gubernatorial level at the time of adoption. Little attention, however, has been given to women’s health mandates outside the issue of abortion and to variation among state partisan adoption regarding informed consent for pelvic exams. This paper examines the impact of partisanship, the percentage of women in the legislature, and …

The Ethicality Of Gene Alteration In Human Embryos, Alyssa Scudder

Augustana Center for the Study of Ethics Essay Contest

No abstract provided.

Re-Evaluation Of The Methodology For Estimating The Us Specialty Physician Workforce, W Stephen Black-Schaffer, David J Gross, Zakia Nouri, Aidan Delisle, Michael Dill, Jason Y Park, James M Crawford, Michael B Cohen, Rebecca L Johnson, Donald S Karcher, Thomas M Wheeler, Stanley J Robboy

Faculty, Staff and Students Publications

Increasing pursuit of subspecialized training has quietly revolutionized physician training, but the potential impact on physician workforce estimates has not previously been recognized. The Physicians Specialty Data Reports of the Association of American Medical Colleges, derived from specialty designations in the American Medical Association (AMA) Physician Professional Data (PPD), are the reference source for US physician workforce estimates; by 2020, the report for pathologists was an undercount of 39% when compared with the PPD. Most of the difference was due to the omission of pathology subspecialty designations. The rest resulted from reliance on only the first of the AMA PPD's …

Analytical Challenges In Omics Research On Asthma And Allergy: A National Institute Of Allergy And Infectious Diseases Workshop, Supinda Bunyavanich, Patrice M Becker, Matthew C Altman, Jessica Lasky-Su, Carole Ober, Karsten Zengler, Evgeny Berdyshev, Richard Bonneau, Talal Chatila, Nilanjan Chatterjee, Kian Fan Chung, Colleen Cutcliffe, Wendy Davidson, Gang Dong, Gang Fang, Patricia Fulkerson, Blanca E Himes, Liming Liang, Rasika A Mathias, Shuji Ogino, Joseph Petrosino, Nathan D Price, Eric Schadt, James Schofield, Max A Seibold, Hanno Steen, Lisa Wheatley, Hongmei Zhang, Alkis Togias, Kohei Hasegawa

Center for Medical Ethics and Health Policy Staff Publications

Studies of asthma and allergy are generating increasing volumes of omics data for analysis and interpretation. The National Institute of Allergy and Infectious Diseases (NIAID) assembled a workshop comprising investigators studying asthma and allergic diseases using omics approaches, omics investigators from outside the field, and NIAID medical and scientific officers to discuss the following areas in asthma and allergy research: genomics, epigenomics, transcriptomics, microbiomics, metabolomics, proteomics, lipidomics, integrative omics, systems biology, and causal inference. Current states of the art, present challenges, novel and emerging strategies, and priorities for progress were presented and discussed for each area. This workshop report summarizes …

The Role Of Between-Session Homework In Cognitive-Behavioral Therapy For Comorbid Obsessive-Compulsive Disorder And Autism: A Case Vignette, Molly J Church, Katie H Mangen, Jordan T Stiede, Samuel D Spencer, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Objective: Cognitive-behavioral therapy (CBT), which includes a decided emphasis on exposure and response/ritual prevention (ERP) and between-session practice of treatment principles, has consistently demonstrated efficacy for the treatment of obsessive-compulsive disorder (OCD) and is a gold standard, recommended first-line treatment. CBT with ERP has been successfully adapted to fit the needs of autistic individuals with OCD. The present article provides a brief overview of CBT for OCD and outlines special considerations and adaptations needed when working with patients with OCD and comorbid autism, with an emphasis on the importance of between-session homework.

Method: A case vignette is presented.

Results: This …

Genetic Researchers' Use Of And Interest In Research With Diverse Ancestral Groups, Kaitlyn Jaffe, Amanda K Greene, Luyun Chen, Kerry A Ryan, Chris Krenz, J Scott Roberts, Brian J Zikmund-Fisher, Amy L Mcguire, J Denard Thomas, Erica E Marsh, Kayte Spector-Bagdady

Center for Medical Ethics and Health Policy Staff Publications

Importance: Genetic researchers must have access to databases populated with data from diverse ancestral groups to ensure research is generalizable or targeted for historically excluded communities.

Objective: To determine genetic researchers' interest in doing research with diverse ancestral populations, which database stewards offer adequate samples, and additional facilitators for use of diverse ancestral data.

Design, setting, and participants: This survey study was conducted from June to December 2022 and was part of an exploratory sequential mixed-methods project in which previous qualitative results informed survey design. Eligible participants included genetic researchers who held US academic affiliations and conducted research using human …

Achieving Procedural Parity In Managing Access To Genomic And Related Health Data: A Global Survey Of Data Access Committee Members, Jonathan Lawson, Vasiliki Rahimzadeh, Jinyoung Baek, Edward S Dove

Center for Medical Ethics and Health Policy Staff Publications

Data access committees (DACs) are critical players in the data sharing ecosystem. DACs review requests for access to data held in one or more repositories and where specific constraints determine how the data may be used and by whom. Our team surveyed DAC members affiliated with genomic data repositories worldwide to understand standard processes and procedures, operational metrics, bottlenecks, and efficiencies, as well as their perspectives on possible improvements to quality review. We found that DAC operations and systemic issues were common across repositories globally. In general, DAC members endeavored to achieve an appropriate balance of review efficiency, quality, and …

Data Stewardship In Ftld Research: Investigator And Research Participant Views, Jalayne J Arias, Ana M Tyler, Laura M Beskow, Maria C Carillo, Susan Dickinson, Jill Goldman, Mary A Majumder, Michelle M Mello, Heather M Snyder, Jennifer S Yokoyama

Center for Medical Ethics and Health Policy Staff Publications

Introduction: Federal policies and guidelines have expanded the return of individual results to participants and expectations for data sharing between investigators and through repositories. Here, we report investigators' and study participants' views and experiences with data stewardship practices within frontotemporal lobal degeneration (FTLD) research, which reveal unique ethical challenges.

Methods: Semi-structured interviews with (1) investigators conducting FTLD research that includes genetic data collection and/or analysis and (2) participants enrolled in a single site longitudinal FTLD study.

Results: Analysis of the interviews identified three meta themes: perspectives on data sharing, experiences with enrollment and participation, and data management and security as …

Antitumor Efficacy And Safety Of Unedited Autologous Cd5car T Cells In Relapsed/Refractory Mature T-Cell Lymphomas, Laquisa C Hill, Rayne H Rouce, Mengfen J Wu, Tao Wang, Royce Ma, Huimin Zhang, Birju Mehta, Natalia Lapteva, Zhuyong Mei, Tyler S Smith, Lina Yang, Madhuwanti Srinivasan, Phillip M Burkhardt, Carlos A Ramos, Premal Lulla, Martha Arredondo, Bambi Grilley, Helen E Heslop, Malcolm K Brenner, Maksim Mamonkin

Center for Medical Ethics and Health Policy Staff Publications

Despite newer targeted therapies, patients with primary refractory or relapsed (r/r) T-cell lymphoma have a poor prognosis. The development of chimeric antigen receptor (CAR) T-cell platforms to treat T-cell malignancies often requires additional gene modifications to overcome fratricide because of shared T-cell antigens on normal and malignant T cells. We developed a CD5-directed CAR that produces minimal fratricide by downmodulating CD5 protein levels in transduced T cells while retaining strong cytotoxicity against CD5⁺ malignant cells. In our first-in-human phase 1 study (NCT0308190), second-generation autologous CD5.CAR T cells were manufactured from patients with r/r T-cell malignancies. Here, we report safety …

Investigating The Roles And Responsibilities Of Institutional Signing Officials After Data Sharing Policy Reform For Federally Funded Research In The United States: National Survey, Jinyoung Baek, Jonathan Lawson, Vasiliki Rahimzadeh

Center for Medical Ethics and Health Policy Staff Publications

Background: New federal policies along with rapid growth in data generation, storage, and analysis tools are together driving scientific data sharing in the United States. At the same, triangulating human research data from diverse sources can also create situations where data are used for future research in ways that individuals and communities may consider objectionable. Institutional gatekeepers, namely, signing officials (SOs), are therefore at the helm of compliant management and sharing of human data for research. Of those with data governance responsibilities, SOs most often serve as signatories for investigators who deposit, access, and share research data between institutions. Although …

Healthcare For Undocumented People In America, Richard Pazer

Graduate Student Research Symposium

Millions of undocumented people live in America and roughly a million have entered every year since 2021. This is a hot-button issue in mainstream politics for a variety of reasons. However, there is an issue that tends to get overlooked which is their health care. In most states, undocumented people do not qualify for healthcare coverage of any kind. This leaves them reliant on EMTALA and emergency departments (ED). Through an examination of the various state and federal policies that pertain to undocumented people’s healthcare coverage, we can see that these people are in desperate need of assistance. It becomes …

Close Contacts Of Xenograft Recipients: Ethical Considerations Due To Risk Of Xenozoonosis, Daniel J Hurst, Luz Padilla, Daniel Rodger, Tamar Schiff, David K C Cooper

Rowan-Virtua School of Osteopathic Medicine Departmental Research

With decades of pre-clinical studies culminating in the recent clinical application of xenotransplantation, it would appear timely to provide recommendations for operationalizing oversight of xenotransplantation clinical trials. Ethical issues with clinical xenotransplantation have been described for decades, largely centering on animal welfare, the risks posed to the recipient, and public health risks posed by potential spread of xenozoonosis. Much less attention has been given to considerations relating to potentially elevated risks faced by those who may care for or otherwise have close contact with xenograft recipients. This paper examines the ethical and logistical issues raised by the potential exposure to …