Bioethics and Medical Ethics Commons^™

Will Anti-Vaccine Activism In The Usa Reverse Global Goals?, Peter J Hotez

Center for Medical Ethics and Health Policy Staff Publications

In the time of the COVID-19 pandemic, anti-vaccine activism in the USA accelerated, amplified and formed an alliance with political groups and even extremists. An organized, well-funded and empowered anti-science movement now threatens to spill over and threaten all childhood immunizations in the USA and globally.

An Ultra-Brief Screening Scale For Pediatric Obsessive-Compulsive Disorder: The Oci-Cv-5, Amitai Abramovitch, Jonathan S Abramowitz, Dean Mckay, Heining Cham, Kennedy S Anderson, Lara J Farrell, Daniel A Geller, Gregory L Hanna, Sharna Mathieu, Joseph F Mcguire, David R Rosenberg, S Evelyn Stewart, Eric A Storch, Sabine Wilhelm

Center for Medical Ethics and Health Policy Staff Publications

Background: Obsessive-compulsive disorder (OCD) is an often disabling and chronic condition that is normally assessed using diagnostic interviews or lengthy self-report questionnaires. This makes routine screening in general health settings impractical, and as a result OCD is often under-(or mis-)recognized. The present study reports on the development of an ultra-brief version of the Obsessive-Compulsive Inventory-Child Version (OCI-CV) which may be administered routinely as a screener for pediatric OCD.

Method: A total of 489 youth diagnosed with OCD, 259 non-clinical controls, and 299 youth with other disorders completed the OCI-CV and other indices of psychopathology. Using item analyses, we extracted five …

Change During Cognitive And Exposure Phases Of Cognitive-Behavioral Therapy For Autistic Youth With Anxiety Disorders, Andrew G Guzick, Sophie C Schneider, Philip C Kendall, Jeffrey J Wood, Connor M Kerns, Brent J Small, Ye Eun Park, Sandra L Cepeda, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Objective: To evaluate improvement during the (a) cognitive and (b) exposure therapy phases of cognitive-behavioral therapy (CBT) for autistic youth with anxiety disorders.

Method: Participants were 148 autistic youth (aged 7-13; 77% male; 64% White) with clinically significant anxiety who were randomized to standard or adapted CBT. Clinician-rated anxiety severity was recorded at each appointment. Trajectories of change during (a) the cognitive phase and (b) the exposure phase of treatment were analyzed using piecewise multilevel modeling.

Results: Compared to the psychoeducation and cognitive therapy phases, the exposure phase corresponded with significantly more rapid symptom reduction, b = -.11, 95% CI …

Years Of Life Lost Associated With Covid-19 Deaths In The Usa During The First 2 Years Of The Pandemic, Troy Quast, Ross Andel, Sean Gregory, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Background: Prior estimates of the years of life lost (YLLs) in the USA associated with coronavirus disease 2019 (COVID-19) were 1.2 million through 11 July 2020 and 3.9 million through 31 January 2021 (which roughly coincides with the first full year of the pandemic). The aim of this study is to update YLL estimates through the first 2 years of the pandemic.

Methods: We employed data regarding COVID-19 deaths through 5 February 2022 by jurisdiction, gender and age group. We used actuarial life expectancy tables by gender and age to estimate YLLs.

Results: We estimated roughly 9.7 million YLLs due …

Ethical Oversight Of Roles & Relationships In Treatment & Research In Advanced Disease States, Alexa Vercelli

Electronic Theses and Dissertations

There is often ethical analysis focusing solely on the care of the patient by the physician or on the protection of the research participant by the clinical investigator, but those two are often overlapping. By paralleling the analysis of treatment and research, it emphasizes the specific ethical approaches necessary for individuals facing advanced diseases states in the separate roles of being a patient or participant. It also gives guidance to the complexity of the ethics surrounding medical professionals who float between the roles of treating physicians and clinical investigators. As individuals with advanced disease states are considered a vulnerable population …

Respecting The Ethical Tension Between Surveillance And Privacy In Promoting Public Health And Disease Management, Kamal Althobaiti

Electronic Theses and Dissertations

The recognition of the need to undertake surveillance and to protect privacy is well established. However, the continually changing circumstances and fast-paced development of healthcare today requires a continuing need to respect this ethical tension between surveillance and privacy. Hence, this dissertation is to respect the ethical tension between surveillance and privacy in promoting public health and disease management. This dissertation investigates the ethics of conducting public health surveillance, including the challenges associated with obtaining consent and protecting data from unauthorized access. The dissertation will focus on the ethical consequences of big data, including issues associated with obtaining informed consent, …

Random Field Modeling Of Multi-Trait Multi-Locus Association For Detecting Methylation Quantitative Trait Loci, Chen Lyu, Manyan Huang, Nianjun Liu, Zhongxue Chen, Philip J Lupo, Benjamin Tycko, John S Witte, Charlotte A Hobbs, Ming Li

Center for Medical Ethics and Health Policy Staff Publications

Motivation: CpG sites within the same genomic region often share similar methylation patterns and tend to be co-regulated by multiple genetic variants that may interact with one another.

Results: We propose a multi-trait methylation random field (multi-MRF) method to evaluate the joint association between a set of CpG sites and a set of genetic variants. The proposed method has several advantages. First, it is a multi-trait method that allows flexible correlation structures between neighboring CpG sites (e.g. distance-based correlation). Second, it is also a multi-locus method that integrates the effect of multiple common and rare genetic variants. Third, it models …

Safety And Tolerability Of Carboplatin And Paclitaxel In Cancer Patients With Hiv (Amc-078), An Aids Malignancy Consortium (Amc) Study, Missak Haigentz, Page Moore, Milan Bimali, Timothy Cooley, Joseph Sparano, Michelle Rudek, Lee Ratner, David Henry, Juan Ramos, John Deeken, Paul Rubinstein, Elizabeth Chiao

Center for Medical Ethics and Health Policy Staff Publications

Background: Persons living with human immunodeficiency virus are an underserved population for evidence-based cancer treatment. Paclitaxel and carboplatin (PCb) is an active regimen against a variety of solid tumors, including several seen in excess in patients with HIV infection. We performed a pilot trial to evaluate the safety of full-dose PCb in people living with human immunodeficiency virus and cancer.

Methods: Eligible patients, stratified by concurrent antiretroviral therapy (ART) that included CYP3A4 inhibitors or not, received paclitaxel (175 mg/m2) in combination with carboplatin (target AUC 6) intravenously every 3 weeks for up to 6 cycles.

Results: Sixteen evaluable patients received …

Prevalence Of Human Papillomavirus Infection Among Women Born In The 1990s Vs The 1980s And Association With Hpv Vaccination In The Us, Zahed Shahmoradi, Haluk Damgacioglu, Jane Montealegre, Elizabeth Y Chiao, Keith Sigel, Kalyani Sonawane, Ashish A Deshmukh

Center for Medical Ethics and Health Policy Staff Publications

This cross-sectional study examines rates of human papillomavirus infections among a cohort of vaccinated and unvaccinated women born in the 1990s.

Ethical Considerations Of Telehealth: Access, Inequity, Trust, And Overuse, Monica O'Reilly-Jacob, Andrea Vicini, Ashley P. Duggan

Journal of Health Ethics

In the U.S. healthcare system, telehealth is increasingly present and demands ethical assessment. On the one hand, telehealth increases access to healthcare services for some at-risk populations (e.g., people suffering from mental illness and addictions) and in specific contexts (e.g., rural). On the other hand, telehealth widens the digital divide and can lead to overuse of services. Furthermore, because it is still unclear how telehealth influences trust between patients and primary care clinicians, connecting relationship science and human communication research can inform critical reasoning. Finally, healthcare policy is advancing toward the wide adoption of telehealth. Hence, it is urgent to …

Financial Incentives And Healthcare: A Critique Of Michael Sandel, Mark Peacock

Journal of Health Ethics

The use of financial incentives in healthcare calls for ethical examination. Michael Sandel's influential work represents such examination and is subject to critical analysis in this paper. Sandel focuses on monetary payments to persuade patients to lose weight, give up smoking etc. but also on the much-discussed case of giving drug addicts money in return for their consent to be sterilized. He offers two separate objections to financial incentives, one based on coercion, the other on corruption. I argue that Sandel's corruption objection to commodification is insufficient to ground the objection he has to financial incentives in healthcare. Whatever strength …

Ethical Implications Of Covid-19 Surveillance In Karnataka Using Nancy Kass Framework, Apurva Jain, Lakshya Arora

Journal of Health Ethics

Numerous public health hurdles, including pandemics such as COVID-19, have led to concerns about community health practices in relation, necessitating the application of an ethical perspective. International research ethics guidelines are only used in a restricted range of contexts of public health. As a result, a variety of frameworks have been established to assist ethical analysis of public health concerns. In this study, we have used the Nancy Kass framework for analyzing COVID-19 surveillance in Karnataka state of India, which is a six-step approach that can assist public health practitioners in evaluating the ethical consequences of interventions, policy initiatives, services, …

Reciprocity And Priority Allocation System For Organ Transplant: An Ethical Analysis, Gordon Wong, Chong Ho Yu

Journal of Health Ethics

How to increase the supply of organs donations for transplant is a critical issue in healthcare. Although recently xenotransplantation has received much publicity, it may be years before this becomes clinically viable. The Reciprocity and Priority Allocation (RPA) System currently used in Israel and a few other countries may be a reasonable approach to increase organ donation in the foreseeable future. For this approach to be accepted by the public, a robust analysis on its ethical implications is needed. This paper applies two formal ethics frameworks to analyze the implication of the RPA system.

Chronic Poetics: A Waiting Room Of One's Own, Madeleine Simmons

Electronic Theses, Projects, and Dissertations

This article explores chronic poetics, through my personal lens I take readers on a walk- through of poetry and the discussions surrounding chronic illnesses. I examine the current state of chronic illness and the nuances to its discussion. I analyze chronic illness in the context of disability studies, and touch on the tensions of categorizing chronic illness as a disability. As well as how to best navigate reading chronic poetics, as poets engage in new territories as they form a new language to describe their circumstances. While analyzing multiple poems from different authors, I explore why specifically the vessel of …

Outcomes Associated With Timing Of Neurologic Dysfunction Onset Relative To Pediatric Sepsis Recognition, Alicia M Alcamo, Scott L Weiss, Julie C Fitzgerald, Matthew P Kirschen, Laura L Loftis, Swee Fong Tang, Neal J Thomas, Vinay M Nadkarni, Sholeen T Nett

Center for Medical Ethics and Health Policy Staff Publications

Objectives: To compare outcomes associated with timing-early versus late-of any neurologic dysfunction during pediatric sepsis.

Design: Secondary analysis of a cross-sectional point prevalence study.

Setting: A total of 128 PICUs in 26 countries.

Patients: Less than 18 years with severe sepsis on 5 separate days (2013-2014).

Interventions: None.

Measurements and main results: Patients were categorized as having either no neurologic dysfunction or neurologic dysfunction (i.e., present at or after sepsis recognition), which was defined as Glasgow Coma Scale score less than 5 and/or fixed dilated pupils. Our primary outcome was death or new moderate disability (i.e., Pediatric Overall [or Cerebral] …

Is Detection Of Relapse By Surveillance Imaging Associated With Longer Survival In Patients With Rhabdomyosarcoma?, Stephanie Fetzko, Adriana Fonseca, Mary Frances Wedekind, Abha A Gupta, Bhuvana A Setty, Jeremy Schraw, Philip J Lupo, Robert P Guillerman, Anish A Butala, Heidi Russell, Lauren Nicholls, David Walterhouse, Douglas S Hawkins, Mehmet F Okcu

Center for Medical Ethics and Health Policy Staff Publications

Background: We investigated whether surveillance imaging had an impact on post-relapse survival in patients with rhabdomyosarcoma (RMS). We hypothesized that relapse detected by imaging (group IM) would be associated with longer survival compared with relapse detected with a clinical sign or symptom (group SS).

Materials and methods: We performed an observational multi-institutional study in 127 patients with relapsed RMS comparing overall survival (OS) after relapse using Kaplan-Meier and Cox proportional hazards analyses.

Results: Relapse was detected in 60 (47%) group IM and 67 (53%) SS patients. Median follow-up in survivors was 4 years (range 1.0 to 16.7 y). Four-year OS …

Addressing Human Trafficking As A Public Health Issue, Frances Recknor, Erica Di Ruggiero, Elsabeth Jensen

Center for Medical Ethics and Health Policy Staff Publications

Human trafficking is increasingly recognized as a significant global public health issue. Human trafficking (HT) exists in all nations, including Canada, and is estimated to impact 25 million people globally. HT is a crime that is not always visible. It is associated with a myriad of deleterious health outcomes arising from adverse living and working conditions, and the physical, sexual, and/or psychological violence often accompanying it. Human trafficking also disproportionately affects people living under vulnerable circumstances, particularly those with intersecting vulnerabilities. Public health can advance health equity for trafficked persons and add value to existing anti-trafficking (AT) efforts. Among its …

De Novo Heterozygous Variants In Slc30a7 Are A Candidate Cause For Joubert Syndrome, Monica Penon-Portmann, Mohammad K Eldomery, Lorraine Potocki, Dana Marafi, Jennifer E Posey, Zeynep Coban-Akdemir, Tamar Harel, Christopher M Grochowski, Hailey Loucks, Walter Patrick Devine, Jessica Van Ziffle, Dan Doherty, James R Lupski, Joseph T Shieh

Center for Medical Ethics and Health Policy Staff Publications

Joubert syndrome (JS), a well-established ciliopathy, is characterized by the distinctive molar tooth sign on brain MRI, ataxia, and neurodevelopmental features. Other manifestations can include polydactyly, accessory frenula, renal, or liver disease. Here, we report individuals meeting criteria for JS with de novo heterozygous variants in SLC30A7 (Chr1p21.2). The first individual is a female with history of unilateral postaxial polydactyly, classic molar tooth sign on MRI, macrocephaly, ataxia, ocular motor apraxia, neurodevelopmental delay, and precocious puberty. Exome sequencing detected a de novo heterozygous missense variant in SLC30A7: NM_133496.5: c.407 T > C, (p.Val136Ala). The second individual had bilateral postaxial polydactyly, molar …

Circulating Trophoblast Numbers As A Potential Marker For Pregnancy Complications, Brielle Crovetti, Mohamad Ali Maktabi, Hadi Erfani, Tachjaree Panchalee, Qun Wang, Liesbeth Vossaert, Ignatia Van Den Veyver

Center for Medical Ethics and Health Policy Staff Publications

Objective: To explore the potential of circulating trophoblasts (TBs) as a non-invasive tool to assess placental health and predict obstetric complications.

Methods: We retrospectively reviewed maternal characteristics and pregnancy outcomes of 369 women who enrolled in our original cell-based NIPT (cbNIPT) study. The number of circulating TBs recovered from the maternal blood samples was recorded and expressed as fetal cell concentration (FCC). We evaluated if FCC can be used to predict pregnancy outcomes such as hypertensive disorders of pregnancy (HDP), fetal growth restriction, placental abruption, preterm labor, and pregnancy loss.

Results: Receiver operating characteristic (ROC) analysis was performed to find …

Stepped Care Versus Standard Care For Children After Trauma: A Randomized Non-Inferiority Clinical Trial, Alison Salloum, Yuanyuan Lu, Henian Chen, Troy Quast, Judith A Cohen, Michael S Scheeringa, Kristen Salomon, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Objective: Trauma-focused cognitive-behavioral therapy (TF-CBT) is an evidence-based therapist-led treatment for children after trauma. Parents often experience barriers to treatment engagement, including cost. Stepped care TF-CBT (SC-TF-CBT) was developed as an alternative delivery system. Step One is a parent-led therapist-assisted treatment. Step Two provides therapist-led TF-CBT for children who did not benefit from Step One and require more intensive treatment. This study compared SC-TF-CBT to standard TF-CBT in a community-based non-inferiority trial.

Method: A total of 183 children (aged 4-12 years) experiencing posttraumatic stress symptoms (PTSS) and their caregivers were randomly assigned to SC-TF-CBT or standard TF-CBT within 6 community …