Bioethics and Medical Ethics Commons^™

Attitudes Toward Personal Health Data Sharing Among People Living With Sickle Cell Disorder, Exemplar For Study Of Rare Disease Populations, Rebecca Baines, Sebastian Stevens, Zainab Garba-Sani, Arunangsu Chatterjee, Daniela Austin, Simon Leigh

Journal of Patient-Centered Research and Reviews

Purpose: Rare conditions are often poorly understood, creating barriers in determining the value treatments can provide. This study explored barriers and facilitators to personal health data sharing among those with one particular group of rare hematologic disorders, ie, sickle cell disorder (SCD) and its variants.

Methods: A single online focus group among those > 18 years of age and living with SCD was conducted. Participants (N = 25) were recruited through a United Kingdom-based SCD charity. Discussions were transcribed verbatim, with data therein analyzed using inductive thematic analysis.

Results: Five primary motivators for sharing health data were identified: improving awareness; knowing …

Patients And Families As Partners In Patient-Oriented Research: How Should They Be Compensated?, Monika Novak-Pavlic, Jan Willem Gorter, Michelle P. Phoenix, Samantha K. Micsinszki, Kinga Pozniak, Lin Li, Linda Nguyen, Alice K. Soper, Elaine Yuen Ling Kwok, Jael N. Bootsma, Francine Buchanan, Hanae Davis, Sandra Abdel Malek, Karen M. Van Meeteren, Peter L. Rosenbaum

Journal of Patient-Centered Research and Reviews

Patient and family engagement has become a widely accepted approach in health care research. We recognize that research conducted in partnership with people with relevant lived experience can substantially improve the quality of that research and lead to meaningful outcomes. Despite the benefits of patient-researcher collaboration, research teams sometimes face challenges in answering the questions of how patient and family research partners should be compensated, due to the limited guidance and lack of infrastructure for acknowledging partner contributions. In this paper, we present some of the resources that might help teams to navigate conversations about compensation with their patient and …

Peer-Supervision Of Nursing Professionals: A Shield Against Burnout, Kyle Gamache, Sarah Gamache, Joseph Robillard

Journal of Wellness

Introduction: Burnout is a major risk in healthcare professions and is a significant contributor to the current nursing shortage. Strategies to combat burnout of healthcare professionals are in desperate need. The purpose of this project is to introduce the clinical peer supervision model as a method to alleviate burnout in nursing professionals.

Approach: Eight nurses from in-patient settings participated in a peer-supervision support group, modeled after existing European nursing and mental health provider-support protocols. To assess the effect of this intervention, qualitative data analysis was conducted on the transcripts of session and the results described. All participants reported statistically high …

Delivery Of The Immune System: Understanding The Development Of The Human Immune System Based On Birth Mode, Sara Abbas

Faculty Curated Undergraduate Works

The creation of the immune system starts from the womb. The expecting mother plays an immense role outside of the genetic influence in developing a neonate’s immune system. The mode of birth has a substantial impact, as the neonate’s initial moments can have lasting impacts on the making of a proper immune system. A mother should have the choice in choosing between a vaginal birth or a cesarean section and this paper looks to provide aid in the decision process by contrasting the two modes in terms of immunological impact, especially as the rate of c-sections climb (1,2). The approach …

Personal Autonomy And Self-Determination Are Crucial For Professionalism In Healthcare, Jason M. Organ, Heather F. Smith, Paul A. Trainor, Kari Allen, Joy Y. Balta, Amy C. Beresheim, Danielle Brewer-Deluce, Kirsten M. Brown, Anne M. Burrows, Kelsey T. Byers, Jessica N. Byram, Andrew S. Cale, Melissa A. Carroll, Thomas Champney, Jon Cornwall, Manisha R. Dayal, Valerie B. Deleon, Martine Dunnwald, Christopher Ferrigno, Gabrielle M. Finn, Glenn M. Fox, Pamela L. Geller, Geoffrey D. Guttmann, Noah Harper, Kelly M. Harrell, Adam Hartstone-Rose, Sabine Hildebrandt

School of Medicine Faculty Publications

No abstract provided.

Jurisgenerative Tissues: Sociotechnical Imaginaries And The Legal Secretions Of 3d Bioprinting, Roxanne Mykitiuk, Joshua Shaw

Articles & Book Chapters

Three-dimensional ‘bioprinting’ is under development, which may produce living human organs and tissues to be surgically implanted in patients. Like tissue engineering and regenerative medicine generally, the process of bioprinting potentially disrupts experience of the human body by redefining understandings of, and becoming actualised in new practices and regimes in relation to, the body. The authors consider how these novel sociotechnical imaginaries may emerge, having regard to law’s contribution to, as well as its possible transformation by, the process of 3D bioprinting. The authors draw on Gilbert Simondon and corporeal, material feminists to account for these disruptions as ‘ontogenetic,’ in …

Public Opinion And Support On Physician Assisted Suicide, Emma Gottschalk

Political Science Theses and Capstones

I investigate the connection between public opinion and physician assisted suicide, using data in the SPSS data set from 2021. The strength of support a person feels towards PAS and what influenced that view is studied, religious affiliation, age, sex, education level, income, race, and region are considered in the study. The data set was collected through surveys that willing persons over the age of 18 completed. I analyze who is more willing to support PAS and why. I find that religion has a huge impact on public support for PAS, while other factors like education, sex, age and race …

"Life Unworthy Of Life" Aktion T4: The First Nazi Genocide, Alexander M. Remington

Student Publications

Though usually viewed as a prelude to the Holocaust, the T4 euthanasia program was a distinct genocide carried out by the Third Reich’s doctors. Allowing themselves to be corrupted by eugenics and Nazi policy, the perpetrators of the Nazi euthanasia killings transformed themselves from healers to murderers. Despite public resistance led by Bishop Clemens von Galen which resulted in the cancellation of the T4 program, Nazi doctors took it upon themselves to continue euthanizing patients until the end of the war, emphasizing the legitimacy that euthanasia had acquired. The history of the T4 program, its perpetrators, and resisters is critical …

The Revolutionary Genome Editor: Crispr-Cas9 Systems, Grace Spade

Senior Honors Theses

Genetic engineering is the modification of an organism's genetic material to alter its traits through adding, deleting, or changing specific genes. CRISPR-Cas9 systems are groundbreaking tools for genetic engineering, in short utilizing a molecule called RNA to guide a protein called Cas9 to a specific location in DNA to add, delete, or replace genes. The history of how the CRISPR-Cas9 systems came into existence, how it was adapted from a natural defense system in bacteria, and its mechanism of action in both are explained. Its applications, both present and future, competing genetic modifiers, advantages and disadvantages, and the ethical dilemmas …

In Vitro Gametogenesis: A Research Timeline And Implications For The Future Of Assisted Reproductive Technology, Nicole Buckley

Senior Honors Theses

The novel reproductive technology, In Vitro Gametogenesis (IVG), includes the process of obtaining mature viable germ cells from pluripotent stem cells. To do so, embryonic stem cells and induced pluripotent stem cells are specified to primordial germ cells and differentiated to form gametes that undergo further maturation, which subsequently may undergo in vitro fertilization to form an embryo. With this capability, IVG holds the power to provide a novel treatment option for human infertility. As of now, research has been conducted on mice successfully, and with limited success in humans. Future research will likely focus on discovering the species-specific differences …

Where Do We Draw The Line? The Ethical Dilemma Involved In Genetic Engineering And Gene Therapy, Amber Schrag

Senior Honors Theses

Genetic engineering and gene therapy are greatly disputed in our time. With the advancement of technology, one has the power to manipulate genes in the body, which raises the questions: What is our role in this? Is there a limit to this power, or should there be? This paper reviews the uses of this technology and evaluates the ethics from a scientific and Biblical point of view. It is concluded that using gene therapy to help cure diseases is very beneficial in both the scientific and Biblical realm as it is restoring individuals back to health and wholeness.

Moral Injury To Inform Analysis Of Post-Traumatic Stress Disorder, Amanda Julia Manea

Senior Theses

Post-traumatic stress disorder (PTSD) is a mental health condition that almost one out of ten veterans struggle with. Although the National Center for PTSD has made extensive progress in characterizing and developing new treatments for PTSD, most veterans still experience symptoms of PTSD following treatment. Novel avenues of investigation, such as developing algorithms to review electronic health record (EHR) data and better understanding moral injury, are being pursued to address the gap that still exists when it comes to treating veterans. Moral injury is the individual evaluation of exposure to a potentially morally injurious event (PMIE) and can lead to …

The Ethical Challenges Of Newborn Screening Programs In The United States, Devin Donovan

Senior Theses

Newborn screening programs have been mandated throughout the United States since the 1960s, and technological advancements have allowed for their evolution into the essential public health entities they are today (Arnold 558). These programs screen newborns for a variety of congenital and genetic conditions in all states, but each state varies in conditions screened and policies for collecting and using samples. Residual blood spots are a key component of these programs because they are often used for secondary purposes, such as for quality assurance and public health or biomedical research (Botkin et al. 121). Ethical challenges have arisen related to …

International Society For Prenatal Diagnosis 2022 Debate 3-Fetal Genome Sequencing Should Be Offered To All Pregnant Patients, Ignatia B Van Den Veyver, Yuval Yaron, Zandra C Deans

Center for Medical Ethics and Health Policy Staff Publications

Prenatal trio exome sequencing (ES) has become integrated into the care for pregnant women when the fetus has structural anomalies. Details regarding optimizing indications for prenatal exome sequencing, its detection rates with different categories of fetal anomalies, and principles of interpretation of pathogenicity of sequence variants are still under investigation. However, there is now growing consensus about its benefits for finding the cause of fetal structural anomalies. What is not established, is whether exome or genome sequencing (GS) has a place in the care of all pregnant women. This report is a summary of the debate on this topic at …

Things That Make You Go Hmm: Myths And Misconceptions Within Cognitive-Behavioral Treatment Of Obsessive-Compulsive Disorder, Samuel D Spencer, Jordan T Stiede, Andrew D Wiese, Andrew G Guzick, Matti Cervin, Dean Mckay, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

The past four decades have yielded a robust body of evidence supporting the efficacy and effectiveness of cognitive-behavioral therapy (CBT) as a gold-standard treatment for obsessive-compulsive disorder (OCD) across the lifespan. Exposure and response prevention (E/RP) has been identified as a key component of this approach. Despite robust research support for CBT with E/RP, several myths and misconceptions continue to proliferate in both research and practice settings. Such myths and misconceptions are concerning, as they lack empirical basis, may hinder widespread dissemination and implementation of CBT for OCD, and run contrary to the practice of evidence-based psychological medicine. Focusing on …

Key Drivers Of Family-Level Utility Of Pediatric Genomic Sequencing: A Qualitative Analysis To Support Preference Research, Hadley Stevens Smith, Emily S Bonkowski, Raymond Belanger Deloge, Amanda M Gutierrez, Alva M Recinos, Tara A Lavelle, David L Veenstra, Amy L Mcguire, Stacey Pereira

Center for Medical Ethics and Health Policy Staff Publications

Given that pediatric genomic sequencing (GS) may have implications for the health and well-being of both the child and family, a clearer understanding of the key drivers of the utility of GS from the family perspective is needed. The purpose of this study is to explore what is important to caregivers of pediatric patients regarding clinical GS, with a focus on family-level considerations. We conducted semi-structured interviews with caregivers (n = 41) of pediatric patients who had been recommended for or completed GS that explored the scope of factors caregivers considered when deciding whether to pursue GS for their child. …

Are Human Papillomavirus Knowledge And Vaccine Uptake Associated With Hiv Status And Social Determinants Of Health In Young Sexual Minority Men?, Trisha L Amboree, Alan G Nyitray, John Schneider, Nick Gargurevich, Jacky Kuo, Elizabeth Y Chiao, Lu-Yu Hwang, Kayo Fujimoto

Center for Medical Ethics and Health Policy Staff Publications

This brief report examines the relationship, if any, between human immunodeficiency virus (HIV) status, and individual-level and socio-sexual partner-level factors of social determinants of health (SDOH) that are associated with human papillomavirus (HPV) knowledge and vaccine uptake in young sexual minority men (YSMM). We used data from 126 YSMM recruited by network-based sampling during 2015-2016 in Houston, Texas. Descriptive statistics and regression analyses were conducted to test the association between HIV status, SDOH, and HPV knowledge and vaccine uptake. Those living with HIV had lower odds of knowledge of HPV-associated anal cancer (OR: 0.43, 95% CI: 0.18-0.97) and knowledge of …

Development And Pilot Testing Of Internet-Delivered, Family-Based Cognitive Behavioral Therapy For Anxiety And Obsessive-Compulsive Disorders In Autistic Youth, Andrew G Guzick, Sophie C Schneider, Amanda B Perozo Garcia, Minjee Kook, Rebecca L Greenberg, David Riddle, Morgan Mcneel, Servando Rodriguez-Barajas, Michelle Yang, Blake Upshaw, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Cognitive behavioral therapy adapted for autistic youth with anxiety and/or OCD has a strong evidence base, but few have access. A 12-week family-based, Internet-delivered cognitive behavioral therapy (iCBT) program for 7-15 year-old autistic youth with anxiety and/or OCD was developed as a potential method to address this problem. Quantitative and qualitative feedback from stakeholders (parents, youth, clinicians) was gathered on an initial draft of content before conducting a pilot trial. This feedback suggested high quality, engagement, usability, and informativeness of the material. Suggestions were incorporated into the treatment program that was tested in a pilot trial. Eight families were randomized …

An Induced Annual Modulation Signature In Cosine-100 Data By Dama/Libra’S Analysis Method, Govinda Adhikari, Nelson Carlin, Jaejin Choi, Seonho Choi, Anthony Ezeribe, Luis Eduardo França, Chang Hyon Ha, In Sik Hahn, Sophia J Hollick, Eunju Jeon, Jay Hyun Jo, Han Wool Joo, Woon Gu Kang, Matthew Kauer, Bongho Kim, Hongjoo Kim, Jinyoung Kim, Kyungwon Kim, Sunghyun Kim, Sun Kee Kim, Won Kyung Kim, Yeongduk Kim, Yong-Hamb Kim, Young Ju Ko, Doo Hyok Lee, Eun Kyung Lee, Hyunseok Lee, Hyun Su Lee, Hye Young Lee, In Soo Lee, Jaison Lee, Jooyoung Lee, Moo Hyun Lee, Seo Hyun Lee, Seung Mok Lee, Yu Jin Lee, Douglas Leonard, Bruno B Manzato, Reina H Maruyama, Robert J Neal, James A Nikkel, Stephen L Olsen, Byung Ju Park, Hyang Kyu Park, Hyeonseo Park, Kangsoon Park, Se Dong Park, Ricardo L C Pitta, Hafizh Prihtiadi, Sejin Ra, Carsten Rott, Keon Ah Shin, Andrew Scarff, Neil J C Spooner, William G Thompson, Liang Yang, Gyun Ho Yu

Faculty and Staff Publications

The DAMA/LIBRA collaboration has reported the observation of an annual modulation in the event rate that has been attributed to dark matter interactions over the last two decades. However, even though tremendous efforts to detect similar dark matter interactions were pursued, no definitive evidence has been observed to corroborate the DAMA/LIBRA signal. Many studies assuming various dark matter models have attempted to reconcile DAMA/LIBRA's modulation signals and null results from other experiments, however no clear conclusion can be drawn. Apart from the dark matter hypothesis, several studies have examined the possibility that the modulation is induced by variations in detector's …

Do Adolescent Patients Have A Right To Be Informed About Fertility Preservation Options By Virtue Of The Conventions On The Rights Of The Child?, Giulia Adele Dinicola

Graduate Student Research Symposium

The 1989 United Nations Convention on the Rights of the Child not only states that children should be heard in matters of their concern according to their age and maturity, but also that children should have a right to have access to information. However, when it comes to medical indications, a consensus has not been reached on whether parents should disclose healthcare complications to their adolescent child. Adolescent disclosure becomes even more controversial when related to non-lifesaving procedures. In the United States, one child in 285 children is diagnosed with cancer every year, but thanks to improvements in medicine, the …

The Hermeneutics Of Nudging: The Reciprocity Between Transhumanism And Nudging, Ian Doherty

Graduate Student Research Symposium

This paper investigates and evaluates the implications of nudging someone toward transhumanism. Transhumanism offers a path to alleviate suffering and transcend our physical and mental limitations. Transhumanist technologies consist of alterations like genetic modification, neural implants, and molecular nanotechnology. These technologies are meant to give people full morphological freedom over their bodies. Although transhumanism remains a largely unknown movement, this is where nudge theory can help raise its prominence. Nudge theory aims to help people make better choices, and aid them in making better decisions related to their health and lifestyle. If paired correctly, transhumanism seems to be a perfect …

Hervs And Cancer-A Comprehensive Review Of The Relationship Of Human Endogenous Retroviruses And Human Cancers, Erik Stricker, Erin C Peckham-Gregory, Michael E Scheurer

Center for Medical Ethics and Health Policy Staff Publications

Genomic instability and genetic mutations can lead to exhibition of several cancer hallmarks in affected cells such as sustained proliferative signaling, evasion of growth suppression, activated invasion, deregulation of cellular energetics, and avoidance of immune destruction. Similar biological changes have been observed to be a result of pathogenic viruses and, in some cases, have been linked to virus-induced cancers. Human endogenous retroviruses (HERVs), once external pathogens, now occupy more than 8% of the human genome, representing the merge of genomic and external factors. In this review, we outline all reported effects of HERVs on cancer development and discuss the HERV …

Pressure, Motion, And Conformational Entropy In Molecular Recognition By Proteins, José A Caro, Kathleen G Valentine, Taylor R Cole, A Joshua Wand

Faculty and Staff Publications

The thermodynamics of molecular recognition by proteins is a central determinant of complex biochemistry. For over a half-century, detailed cryogenic structures have provided deep insight into the energetic contributions to ligand binding by proteins. More recently, a dynamical proxy based on NMR-relaxation methods has revealed an unexpected richness in the contributions of conformational entropy to the thermodynamics of ligand binding. Here, we report the pressure dependence of fast internal motion within the ribonuclease barnase and its complex with the protein barstar. In what we believe is a first example, we find that protein dynamics are conserved along the pressure-binding thermodynamic …

Advancing Health Equity In The Us Military, James D. Mancuso, John Young, Jennifer Rusiecki, Shauna Stahlman, Natasha Schvey, Toya Randolph, Candy Wilson, Catherine Witkop, Patrick Hyde, Althea Green, Patcho Santiago, Donald Shell, Tracy Sbrocco

Journal of Health Disparities Research and Practice

Eliminating health disparities and achieving health equity are central to US national health objectives and the Military Health System’s “quadruple aim,” which has readiness as its core aim. Because military service members enjoy universal eligibility for health care, it is sometimes assumed that health disparities do not exist in the Department of Defense (DoD). However, while some studies have shown that disparities have been attenuated or eliminated in the DoD, others suggest that significant disparities remain. Reasons these disparities may remain include that universal eligibility for care does not necessarily result in equal to access to care, and that equal …

Ada Code Of Ethics (March 2023), American Dental Association

Code of Ethics

The ADA Code of Ethics has three main components: The Principles of Ethics, the Code of Professional Conduct and the Advisory Opinions. Contents may also include: Amendment to ADA Principles of Ethics and Code of Professional Conduct and Insert for the ADA Principles of Ethics and Code of Professional Conduct. The most current issue is available on the ADA’s website.

Ethics And Epidemiology Workshop Report: Towards Ethics-Informed Epidemiology And Epidemiology-Informed Ethics, Zoe Ritchie, Brendan T. Smith Phd, Maxwell J. Smith Phd

Health Studies Publications

Two key groups of researchers have worked in parallel to advance health equity—one on the descriptive component (those in public health sciences, e.g., epidemiologists) and one on the normative component (those in the humanities and social sciences, e.g., philosophers and ethicists). Yet a significant gulf exists between their respective research. Consequently, advances in thinking regarding the philosophical underpinnings and normative requirements of health equity have been largely divorced from the design of public health interventions that seek to reduce health inequities. As a consequence, public health interventions aiming to advance health equity may fail to target the most appropriate populations …

Sfd Indications And Technique: When And How To Use Sdf To Manage Caries Lesions, Margherita Fontana Dds, Phd

The Journal of the Michigan Dental Association

The aim of this article is to review indications for 38% SDF and the appropriate technique for use. Evidence-based recommendations by the American Dental Association and umbrella reviews of systematic reviews are summarized to provide indications for SDF use in primary and permanent teeth, including sound surfaces and those with non-cavitated and cavitated caries lesions. High-quality evidence supports that SDF is an effective treatment alternative for managing active cavitated coronal and root caries lesions and preventing root caries lesions. Dentists can help by incorporating SDF as an option into their caries prevention and management armamentarium and by helping to train …

Parents’ Decision-Making Regarding Whether To Receive Adult-Onset Only Genetic Findings For Their Children: Findings From The Babyseq Project, Stacey Pereira, Amanda M Gutierrez, Jill Oliver Robinson, Kurt D Christensen, Casie A Genetti, Carrie L Blout Zawatsky, Rebecca L Hsu, Bethany Zettler, Melissa Kurtz Uveges, Richard B Parad, Alan H Beggs, Ingrid A Holm, Robert C Green, Amy L Mcguire

Center for Medical Ethics and Health Policy Staff Publications

Purpose: Most professional guidelines recommend against genetic screening for adult-onset only (AO) conditions until adulthood, yet others argue that there may be benefit to disclosing such results. We explored parents' decision-making on this issue in the BabySeq Project, a clinical trial of newborn genomic sequencing.

Methods: We conducted interviews with parents (N = 24) who were given the option to receive actionable AO results for their children. Interviews explored parents' motivations to receive and reasons to decline AO genetic disease risk information, their decision-making process, and their suggestions for supporting parents in making this decision.

Results: Parents noted several motivations …

Replication Competent Retrovirus Testing (Rcr) In The National Gene Vector Biorepository: No Evidence Of Rcr In 1,595 Post-Treatment Peripheral Blood Samples Obtained From 60 Clinical Trials, Kenneth Cornetta, Jing Yao, Kimberley House, Lisa Duffy, Prasad S Adusumilli, Rachel Beyer, Claire Booth, Malcolm Brenner, Kevin Curran, Bambi Grilley, Helen Heslop, Christian S Hinrichs, Rosandra N Kaplan, Hans-Peter Kiem, James Kochenderfer, Donald B Kohn, Sham Mailankody, Scott M Norberg, Roisin E O'Cearbhaill, Jennifer Pappas, Jae Park, Carlos Ramos, Antonio Ribas, Isabelle Rivière, Steven A Rosenberg, Craig Sauter, Nirali N Shah, Susan F Slovin, Adrian Thrasher, David A Williams, Tsai-Yu Lin

Center for Medical Ethics and Health Policy Staff Publications

The clinical impact of any therapy requires the product be safe and effective. Gammaretroviral vectors pose several unique risks, including inadvertent exposure to replication competent retrovirus (RCR) that can arise during vector manufacture. The US FDA has required patient monitoring for RCR, and the National Gene Vector Biorepository is an NIH resource that has assisted eligible investigators in meeting this requirement. To date, we have found no evidence of RCR in 338 pre-treatment and 1,595 post-treatment blood samples from 737 patients associated with 60 clinical trials. Most samples (75%) were obtained within 1 year of treatment, and samples as far …

The Legal Limits Of Parental Autonomy: Do Parents Have The Right To Refuse Intramuscular Vitamin K For Their Newborn?, Shannon M. Isennock

HCA Healthcare Journal of Medicine

The American Academy of Pediatrics recommends that all newborns receive an intramuscular (IM) dose of vitamin K within 6 hours of delivery for the prevention of vitamin K deficiency bleeding (VKDB). There has been an increase in the number of parents who have refused the IM vitamin K dose for their infant based on its possible link to leukemia, preservatives that may lead to adverse reactions, and wanting to avoid pain for the infant. When newborns do not receive IM vitamin K, the most serious feared potential complication is intracranial hemorrhage with potential neurologic sequela including seizures, developmental delay, and …