Health Policy Commons^™

Expanding Narrative Medicine Through The Collaborative Construction And Compelling Performance Of Stories, Woods Nash, Mgbechi Erondu, Andrew Childress

Center for Medical Ethics and Health Policy Staff Publications

This essay proposes an expansion of the concept of narrative competence, beyond close reading, to include two more skills: the collaborative construction and compelling performance of stories. To show how this enhanced form of narrative competence can be attained, the essay describes Off Script, a cocurricular medical storytelling program with three phases: 1) creative writing workshop, 2) dress rehearsal, and 3) public performance of stories. In these phases, Off Script combines literary studies, creative writing, reflective practice, collegial feedback, and drama. With increased narrative competence, Off Script participants are likely better equipped to engage in more impactful health advocacy and …

Black Bioethics In The Age Of Black Lives Matter, Keisha Ray, Faith E Fletcher, Daphne O Martschenko, Jennifer E James

Center for Medical Ethics and Health Policy Staff Publications

No abstract provided.

Ethical Hazards Of Health Data Governance In The Metaverse, Kristin Kostick-Quenet, Vasiliki Rahimzadeh

Center for Medical Ethics and Health Policy Staff Publications

Metaverse-enabled healthcare is no longer hypothetical. Developers must now contend with ethical, legal and social hazards if they are to overcome the systematic inefficiencies and inequities that exist for patients who seek care in the real world.

Framing The Family: A Qualitative Exploration Of Factors That Shape Family-Level Experience Of Pediatric Genomic Sequencing, Hadley Stevens Smith, Emily S Bonkowski, Madison R Hickingbotham, Raymond Belanger Deloge, Stacey Pereira

Center for Medical Ethics and Health Policy Staff Publications

Families of children with rare and undiagnosed conditions face many psychosocial and logistical challenges that may affect their approach to decisions about their child’s care and their family’s well-being. As genomic sequencing (GS) is increasingly incorporated into pediatric diagnostic workups, assessing the family-level characteristics that shape the experience of pediatric GS is crucial to understanding how families approach decision-making about the test and how they incorporate the results into their family life. We conducted semi-structured interviews with parents and other primary caregivers of pediatric patients who were evaluated for a suspected genetic condition and who were recommended to have GS …

Framing The Family: A Qualitative Exploration Of Factors That Shape Family-Level Experience Of Pediatric Genomic Sequencing, Hadley Stevens Smith, Emily S Bonkowski, Madison R Hickingbotham, Raymond Belanger Deloge, Stacey Pereira

Center for Medical Ethics and Health Policy Staff Publications

Families of children with rare and undiagnosed conditions face many psychosocial and logistical challenges that may affect their approach to decisions about their child’s care and their family’s well-being. As genomic sequencing (GS) is increasingly incorporated into pediatric diagnostic workups, assessing the family-level characteristics that shape the experience of pediatric GS is crucial to understanding how families approach decision-making about the test and how they incorporate the results into their family life. We conducted semi-structured interviews with parents and other primary caregivers of pediatric patients who were evaluated for a suspected genetic condition and who were recommended to have GS …

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 …

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 …

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 …

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 …

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 …

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 …

Detection And Characterization Of Constitutive Replication Origins Defined By Dna Polymerase Epsilon, Roman Jaksik, David A Wheeler, Marek Kimmel

Center for Medical Ethics and Health Policy Staff Publications

Background: Despite the process of DNA replication being mechanistically highly conserved, the location of origins of replication (ORI) may vary from one tissue to the next, or between rounds of replication in eukaryotes, suggesting flexibility in the choice of locations to initiate replication. Lists of human ORI therefore vary widely in number and location, and there are currently no methods available to compare them. Here, we propose a method of detection of ORI based on somatic mutation patterns generated by the mutator phenotype of damaged DNA polymerase epsilon (POLE).

Results: We report the genome-wide localization of constitutive ORI in POLE-mutated …

Repurposing Atovaquone As A Therapeutic Against Acute Myeloid Leukemia (Aml): Combination With Conventional Chemotherapy Is Feasible And Well Tolerated, Alexandra Mclean Stevens, Eric S Schafer, Minhua Li, Maci Terrell, Raushan Rashid, Hana Paek, Melanie B Bernhardt, Allison Weisnicht, Wesley T Smith, Noah J Keogh, Michelle C Alozie, Hailey H Oviedo, Alan K Gonzalez, Tamilini Ilangovan, Alicia Mangubat-Medina, Haopei Wang, Eunji Jo, Cara A Rabik, Claire Bocchini, Susan Hilsenbeck, Zachary T Ball, Todd M Cooper, Michele S Redell

Center for Medical Ethics and Health Policy Staff Publications

Survival of pediatric AML remains poor despite maximized myelosuppressive therapy. The pneumocystis jiroveci pneumonia (PJP)-treating medication atovaquone (AQ) suppresses oxidative phosphorylation (OXPHOS) and reduces AML burden in patient-derived xenograft (PDX) mouse models, making it an ideal concomitant AML therapy. Poor palatability and limited product formulations have historically limited routine use of AQ in pediatric AML patients. Patients with de novo AML were enrolled at two hospitals. Daily AQ at established PJP dosing was combined with standard AML therapy, based on the Medical Research Council backbone. AQ compliance, adverse events (AEs), ease of administration score (scale: 1 (very difficult)-5 (very easy)) …

Effect Of Hiv And Antiretroviral Therapy Use On Body Weight Changes In A Cohort Of Us Veterans Living With And Without Hiv, Jose M Garcia, Yongquan Dong, Peter Richardson, Jennifer R Kramer, Christine M Hartman, Kathryn Royse, Donna L White, Elizabeth Y Chiao

Center for Medical Ethics and Health Policy Staff Publications

Objective: People living with HIV have high rates of obesity and obesity-related comorbidities. Our study sought to evaluate weight trajectory in a retrospective cohort of people living with HIV and matched HIV-negative veterans (controls) and to evaluate risk factors for weight gain.

Methods: This was a retrospective database analysis of data extracted from the VA Corporate Data Warehouse that included people living with HIV (n = 22 421) and age-matched HIV-negative controls (n = 63 072). The main outcomes were baseline body weight and weight change from baseline at 1, 2, and 5 years after diagnosis (baseline visit for controls). …

A Phase Ii Window Of Opportunity Study Of Neoadjuvant Pd-L1 Versus Pd-L1 Plus Ctla-4 Blockade For Patients With Malignant Pleural Mesothelioma, Hyun-Sung Lee, Hee-Jin Jang, Maheshwari Ramineni, Daniel Y Wang, Daniela Ramos, Jong Min Choi, Taylor Splawn, Monica Espinoza, Michelle Almarez, Leandria Hosey, Eunji Jo, Susan Hilsenbeck, Christopher I Amos, R Taylor Ripley, Bryan M Burt

Center for Medical Ethics and Health Policy Staff Publications

Purpose: We report the results of a phase II, randomized, window-of-opportunity trial of neoadjuvant durvalumab versus durvalumab plus tremelimumab followed by surgery in patients with resectable malignant pleural mesothelioma (MPM; NCT02592551).

Patients and methods: The primary objective was alteration of the intratumoral CD8/regulatory T cell (Treg) ratio after combination immune checkpoint blockade (ICB) therapy. Secondary and exploratory objectives included other changes in the tumor microenvironment, survival, safety, tumor pathologic response (PR), and systemic immune responses.

Results: Nine patients received monotherapy and 11 received combination therapy. Seventeen of the 20 patients (85%) receiving ICB underwent planned thoracotomy. Both ICB regimens …

Effortful Control Moderates The Relation Between Negative Emotionality And Child Anxiety And Depressive Symptom Severity In Children With Anxiety Disorders, Elizabeth M Raines, Andres G Viana, Erika S Trent, Haley E Conroy, Karina Silva, Michael J Zvolensky, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

The present study investigated the interactive effect of reactive (negative emotionality) and regulatory (effortful control) aspects of temperament in the prediction of child anxiety and depressive symptoms. Clinically anxious children and their mothers completed a battery of questionnaires that included self- and mother-ratings of child effortful control, negative emotionality, anxiety, and depressive symptoms. Multiple regression analyses were conducted to examine the moderating effect of effortful control on the relation between negative emotionality and child anxiety and depressive symptom severity. The interaction between negative emotionality and effortful control was statistically significant and simple slopes revealed that as effortful control increased, the …

Validation Of A Process For Shared Decision-Making In Pediatrics, Douglas J Opel, Holly Hoa Vo, Nicolas Dundas, Heather Spielvogle, Amanda Mercer, Benjamin S Wilfond, Jonna Clark, Carrie L Heike, Elliott M Weiss, Mersine A Bryan, Seema K Shah, Carolyn A Mccarty, Jeffrey D Robinson, Jennifer Blumenthal-Barby, Jon Tilburt

Center for Medical Ethics and Health Policy Staff Publications

OBJECTIVE: We sought to confirm, refute, or modify a 4-step process for implementing shared decision-making (SDM) in pediatrics that involves determining 1) if the decision includes >1 medically reasonable option; 2) if one option has a favorable medical benefit-burden ratio compared to other options; and 3) parents' preferences regarding the options; then 4) calibrating the SDM approach based on other relevant decision characteristics.

METHODS: We videotaped a purposive sample of pediatric inpatient and outpatient encounters at a single US children's hospital. Clinicians from 7 clinical services (craniofacial, neonatology, oncology, pulmonary, pediatric intensive care, hospital medicine, and sports medicine) were eligible. …

The Moralizing Effect: Self-Directed Emotions And Their Impact On Culpability Attributions, Elisabetta Sirgiovanni, Joanna Smolenski, Ben Abelson, Taylor Webb

Center for Medical Ethics and Health Policy Staff Publications

Introduction: A general trend in the psychological literature suggests that guilt contributes to morality more than shame does. Unlike shame-prone individuals, guilt-prone individuals internalize the causality of negative events, attribute responsibility in the first person, and engage in responsible behavior. However, it is not known how guilt- and shame-proneness interact with the attribution of responsibility to others.

Methods: In two Web-based experiments, participants reported their attributions of moral culpability (i.e., responsibility, causality, punishment and decision-making) about morally ambiguous acts of killing in different conditions. In Study 1 the vignettes were presented in the 1st person, while in Study 2 in …

Figg At 5: An Update On Us Public Perspectives On Forensic Investigative Genetic Genealogy Five Years After Its Introduction To Criminal Investigations, Sophie L Schott, April Adams, Ryan J Dougherty, Taylor Montgomery, Folasade C Lapite, Faith E Fletcher

Center for Medical Ethics and Health Policy Staff Publications

Nearly 50 years after Roe versus Wade, the United States Supreme Court's decision in Dobbs versus Jackson Women's Health Organization unraveled the constitutional right to abortion, allowing individual states to severely restrict or ban the procedure. In response, leading medical, public health, and community organizations have renewed calls for research to elucidate and address the burgeoning social and medical consequences of new abortion restrictions. Abortion research not only includes studies that establish the safety, quality, and efficacy of evidence-based abortion care protocols, but also encompasses studies on the availability of abortion care, the consequences of being denied an abortion, and …

Payer Reimbursement Practices And Incentives For Improving Interpretation Of Germline Genetic Testing, Patricia Deverka, Janis Geary, Charles Mathews, Matan Cohen, Gillian Hooker, Mary Majumder, Zuzana Skvarkova, Robert Cook-Deegan

Center for Medical Ethics and Health Policy Staff Publications

Germline genetic testing for inherited cancer risk has shifted to multi-gene panel tests (MGPTs). While MGPTs detect more pathogenic variants, they also detect more variants of uncertain significance (VUSs) that increase the possibility of harms such as unnecessary surgery. Data sharing by laboratories is critical to addressing the VUS problem. However, barriers to sharing and an absence of incentives have limited laboratory contributions to the ClinVar database. Payers can play a crucial role in the expansion of knowledge and effectiveness of genetic testing. Current policies affecting MGPT reimbursement are complex and create perverse incentives. Trends in utilization and coverage for …

Clinician Perceptions Of Passport For Care, A Web-Based Clinical Decision Support Tool For Survivorship Care Plan Delivery, Jason E King, Michael C O'Connor, Ellen Shohet, Susan M Krause, Michael E Scheurer, Marc E Horowitz, David G Poplack, C Michael Fordis, Maria M Gramatges

Center for Medical Ethics and Health Policy Staff Publications

Background: The Children's Oncology Group Long-Term Follow-Up Guidelines provide exposure-based risks and recommendations for late effects screening of survivors of childhood cancer. Passport for Care (PFC) is a web-based clinical decision support tool for generating a personalized survivorship care plan (SCP) derived from the Guidelines and user-entered exposures. We assessed PFC clinician user practices and perceptions of PFC impact on clinic workflow, guidelines application, and survivor shared decision-making.

Procedure: A 35-item REDCap survey was emailed to all PFC users (n = 936) in 146 current and former PFC user clinics. Anonymous responses were permitted. Results were summarized and compared with …

Heritability Of Nervous System Tumors: A Sibling-Based Design, Giorgio Tettamanti, Ralf Kuja-Halkola, Catharina Lavebratt, Mats Talbäck, Alexander Viktorin, Michael E Scheurer, Maria Feychting, Maral Adel Fahmideh

Center for Medical Ethics and Health Policy Staff Publications

Background: The contribution of genetic and environmental factors to susceptibility to nervous system tumors remains unclear. We performed a quantitative genetic study using a sibling design to estimate the heritability of nervous system tumors, as well as the proportion of the risk of these tumors, which is attributable to environmental factors.

Methods: We conducted a population-based cohort study using Swedish National Register data. All individuals born in Sweden during 1950-2010 with available information on both biological parents were included. A Multi-Generation Register was used to identify family clusters, including both full- and half-siblings. Initially, one index person was randomly selected …

Treatment And Life Goals Among Veterans With Gulf War Illness, Nicole Sullivan, Hannah Schorpp, Sarah Crosky, Scott Thien, Drew A Helmer, David R Litke, Wilfred R Pigeon, Karen S Quigley, Lisa M Mcandrew

Center for Medical Ethics and Health Policy Staff Publications

Medically unexplained syndromes (MUS), also termed persistent physical symptoms, are both prevalent and disabling. Yet treatments for MUS are marked by high rates of patient dissatisfaction, as well as disagreement between patients and providers on the management of persistent physical symptoms. A better understanding of patient-generated goals could increase collaborative goal setting and promote person-centered care, a critical component of MUS treatment; yet research in this area is lacking. This paper aimed to develop a typology of treatment and life goals among Gulf War veterans with a medically unexplained syndrome (Gulf War Illness). We examined participants’ responses to open-ended questions …

5-Meo-Dmt For Post-Traumatic Stress Disorder: A Real-World Longitudinal Case Study, Anya Ragnhildstveit, Ryan Khan, Paul Seli, Lisa Claire Bass, River Jude August, Miriam Kaiyo, Nathaniel Barr, Laura Kate Jackson, Michael Santo Gaffrey, Joseph Peter Barsuglia, Lynnette Astrid Averill

Center for Medical Ethics and Health Policy Staff Publications

Psychedelic therapy is, arguably, the next frontier in psychiatry. It offers a radical alternative to longstanding, mainstays of treatment, while exciting a paradigm shift in translational science and drug discovery. There is particular interest in 5-methoxy-N,N-dimethyltryptamine (5-MeO-DMT)—a serotonergic psychedelic—as a novel, fast-acting therapeutic. Yet, few studies have directly examined 5-MeO-DMT for trauma- or stress-related psychopathology, including post-traumatic stress disorder (PTSD). Herein, we present the first longitudinal case study on 5-MeO-DMT for chronic refractory PTSD, in a 23-year-old female. A single dose of vaporized bufotoxin of the Sonoran Desert Toad (Incilius alvarius), containing an estimated 10−15 mg …

Deep Brain Stimulation For Pediatric Dystonia: Clinicians' Perspectives On The Most Pressing Ethical Challenges, Kristin M Kostick-Quenet, Lavina Kalwani, Laura N Torgerson, Katrina Munoz, Clarissa Sanchez, Eric A Storch, J S Blumenthal-Barby, Gabriel Lazáro-Muñoz

Center for Medical Ethics and Health Policy Staff Publications

Introduction: Pediatric deep brain stimulation (pDBS) is commonly used to manage treatment-resistant primary dystonias with favorable results and more frequently used for secondary dystonia to improve quality of life. There has been little systematic empirical neuroethics research to identify ethical challenges and potential solutions to ensure responsible use of DBS in pediatric populations.

Methods: Clinicians (n = 29) who care for minors with treatment-resistant dystonia were interviewed for their perspectives on the most pressing ethical issues in pDBS.

Results: Using thematic content analysis to explore salient themes, clinicians identified four pressing concerns: (1) uncertainty about risks and benefits of pDBS …

Public Mental Health During And After The Sars-Cov-2 Pandemic: Opportunities For Intervention, Melissa M Karnaze, Brent M Kious, Lindsay Z Feuerman, Sarah Classen, Jill O Robinson, Cinnamon S Bloss, Amy L Mcguire

Center for Medical Ethics and Health Policy Staff Publications

Importance: During the pandemic, the number of United States adults reporting clinically significant symptoms of anxiety and depression sky-rocketed, up from 11% in 2020 to more than 40% in 2021. Our current mental healthcare system cannot adequately accommodate the current crisis; it is therefore important to identify opportunities for public mental health interventions.

Objective: Assess whether modifiable emotional factors may offer a point of intervention for the mental health crisis.

Design setting and participants: From January 13 to 15, 2022, adults living in the United States were recruited via Amazon Mechanical Turk to complete an anonymous survey.

Main outcomes and …

Renewed Calls For Abortion-Related Research In The Post-Roe Era, Sophie L Schott, April Adams, Ryan J Dougherty, Taylor Montgomery, Folasade C Lapite, Faith E Fletcher

Center for Medical Ethics and Health Policy Staff Publications

Nearly 50 years after Roe versus Wade, the United States Supreme Court's decision in Dobbs versus Jackson Women's Health Organization unraveled the constitutional right to abortion, allowing individual states to severely restrict or ban the procedure. In response, leading medical, public health, and community organizations have renewed calls for research to elucidate and address the burgeoning social and medical consequences of new abortion restrictions. Abortion research not only includes studies that establish the safety, quality, and efficacy of evidence-based abortion care protocols, but also encompasses studies on the availability of abortion care, the consequences of being denied an abortion, and …

“Extremely Slow And Capricious”: A Qualitative Exploration Of Genetic Researcher Priorities In Selecting Shared Data Resources, M Grace Trinidad, Kerry A Ryan, Chris D Krenz, J Scott Roberts, Amy L Mcguire, Raymond De Vries, Brian J Zikmund-Fisher, Sharon Kardia, Erica Marsh, Jane Forman, Madison Kent, David Wilborn, Kayte Spector-Bagdady

Center for Medical Ethics and Health Policy Staff Publications

Purpose: Genetic researchers' selection of a database can have scientific, regulatory, and ethical implications. It is important to understand what is driving database selection such that database stewards can be responsive to user needs while balancing the interests of communities in equitably benefiting from advances.

Methods: We conducted 23 semistructured interviews with US academic genetic researchers working with private, government, and collaboratory data stewards to explore factors that they consider when selecting a genetic database.

Results: Interviewees used existing databases to avoid burdens of primary data collection, which was described as expensive and time-consuming. They highlighted ease of access as …