Health Policy Commons^™

Patient Perceptions On The Advancement Of Noninvasive Prenatal Testing For Sickle Cell Disease Among Black Women In The United States, Shameka P Thomas, Faith E Fletcher, Rachele Willard, Tiara Monet Ranson, Vence L Bonham

Center for Medical Ethics and Health Policy Staff Publications

Background: Noninvasive prenatal testing (NIPT) designed to screen for fetal genetic conditions, is increasingly being implemented as a part of routine prenatal care screening in the United States (US). However, these advances in reproductive genetic technology necessitate empirical research on the ethical and social implications of NIPT among populations underrepresented in genetic research, particularly Black women with sickle cell disease (SCD).

Methods: Forty (N = 40) semi-structured interviews were conducted virtually with Black women in the US (19 participants with SCD; 21 participants without SCD) from June 2021 to January 2022. We employed a qualitative approach to examine the …

Law Enforcement Use Of Genetic Genealogy Databases In Criminal Investigations: Nomenclature, Definition And Scope, Oliver M Tuazon, Ray A Wickenheiser, Ricky Ansell, Christi J Guerrini, Gerrit-Jan Zwenne, Bart Custers

Center for Medical Ethics and Health Policy Staff Publications

Although law enforcement use of commercial genetic genealogy databases has gained prominence since the arrest of the Golden State Killer in 2018, and it has been used in hundreds of cases in the United States and more recently in Europe and Australia, it does not have a standard nomenclature and scope. We analyzed the more common terms currently being used and propose a common nomenclature: investigative forensic genetic genealogy (iFGG). We define iFGG as the use by law enforcement of genetic genealogy combined with traditional genealogy to generate suspect investigational leads from forensic samples in criminal investigations. We describe iFGG …

The Determinants Of Nonprofit Hospital Ceo Compensation, Derek Jenkins, Marah N Short, Vivian Ho

Center for Medical Ethics and Health Policy Staff Publications

Hospital CEO salaries have grown quickly over the past two decades. We investigate correlates of rising nonprofit hospital CEO pay between 2012 and 2019 by merging compensation data from Candid's IRS 990 forms with hospital data from the National Academy for State Health Policy Hospital Cost Tool. Almost half of the measured increase in CEO compensation (44.5%) accrued to a "base case" CEO, who was leading a non-teaching hospital system or independent hospital with fewer than 100 beds that earned 0 profits and provided no charity care. Another 28.5% of the measured salary increase resulted from changes in the generosity …

A Use Case Of Chatgpt: Summary Of An Expert Panel Discussion On Electronic Health Records And Implementation Science, Seppo T Rinne, Julian Brunner, Timothy P Hogan, Jacqueline M Ferguson, Drew A Helmer, Sylvia J Hysong, Grace Mckee, Amanda Midboe, Megan E Shepherd-Banigan, A Rani Elwy

Center for Medical Ethics and Health Policy Staff Publications

Objective: Artificial intelligence (AI) is revolutionizing healthcare, but less is known about how it may facilitate methodological innovations in research settings. In this manuscript, we describe a novel use of AI in summarizing and reporting qualitative data generated from an expert panel discussion about the role of electronic health records (EHRs) in implementation science.

Materials and methods: 15 implementation scientists participated in an hour-long expert panel discussion addressing how EHRs can support implementation strategies, measure implementation outcomes, and influence implementation science. Notes from the discussion were synthesized by ChatGPT (a large language model-LLM) to generate a manuscript summarizing the discussion, …

Study Protocol For Measuring Stigmatization In Persistent Tic Disorders: Development And Validation Of The Tourette Discrimination-Stigmatization Scale, Jaclyn M Martindale, Victor M Ringheanu, Kelly A Pring, Sandra Norona, Kimberly Wiseman, Roy E Strowd, Leah Chapman, Joseph Rigdon, Stephen R Rapp, Eric A Storch, Edward Ip, Jonathan W Mink

Center for Medical Ethics and Health Policy Staff Publications

Introduction: Persistent Tic Disorders such as Tourette Syndrome are common neurodevelopmental disorders that are highly stigmatized. Many individuals with Persistent Tic Disorders experience peer rejection, loneliness, and self-stigma. Experiencing stigmatization during childhood can influence the persistence of moderate-to-severe tics later in life. Additionally, these factors have been associated with increased suicidal ideation, suicide attempts, and psychiatric symptom severity. There is a need for interventions to reduce stigma and stigmatization in Persistent Tic Disorders. Before developing cost-effective interventions to mitigate stigma's profound downstream health impacts, a reliable measure of stigmatization must be created. The overarching goal of this research is to …

Public Perspectives On Investigative Genetic Genealogy: Findings From A National Focus Group Study, Jacklyn Dahlquist, Jill O Robinson, Amira Daoud, Whitney Bash-Brooks, Amy L Mcguire, Christi J Guerrini, Stephanie M Fullerton

Center for Medical Ethics and Health Policy Staff Publications

Background: Investigative genetic genealogy (IGG) is a technique that involves uploading genotypes developed from perpetrator DNA left at a crime scene, or DNA from unidentified remains, to public genetic genealogy databases to identify genetic relatives and, through the creation of a family tree, the individual who was the source of the DNA. As policymakers demonstrate interest in regulating IGG, it is important to understand public perspectives on IGG to determine whether proposed policies are aligned with public attitudes.

Methods: We conducted eight focus groups with members of the public (N = 72), sampled from four geographically diverse US regions, …

Clinical Characteristics Of Probands With Obsessive-Compulsive Disorder From Simplex And Multiplex Families, Monicke O Lima, Leonardo C Saraiva, Vanessa R Ramos, Melaine C Oliveira, Daniel L C Costa, Brazilian Research Consortium On Obsessive-Compulsive Spectrum Disorders, Thomas V Fernandez, James J Crowley, Eric A Storch, Roseli G Shavitt, Euripedes C Miguel, Carolina Cappi

Center for Medical Ethics and Health Policy Staff Publications

Genetic and non-genetic factors contribute to obsessive-compulsive disorder (OCD), with strong evidence of familial clustering. Genomic studies in psychiatry have used the concepts of families that are "simplex" (one affected) versus "multiplex" (multiple affected). Our study compares demographic and clinical data from OCD probands in simplex and multiplex families to uncover potential differences. We analyzed 994 OCD probands (501 multiplex, 493 simplex) from the Brazilian Research Consortium on Obsessive-Compulsive Spectrum Disorders (C-TOC). Clinicians administered the Structured Clinical Interview for DSM-IV (SCID-IV) to diagnose, Yale-Brown Obsessive-Compulsive Scale (Y-BOCS) to assess severity, and Dimensional Yale-Brown Obsessive-Compulsive Scale (DY-BOCS) to assess symptom dimensionality. …

Obsessive-Compulsive Disorder Among Individuals Of Hispanic And Latin American Ancestry: Cultural Considerations For Assessment And Psychotherapy, Olivia J Morris, Andrew D Wiese, Caitlin M Pinciotti, Rosa Pacheco, Mayra C Martinez Mallen, Ethan J Schweissing, Keaton J Soileau, Latin American Trans-Ancestry Initiative For Ocd Genomics (Latino), Brazilian Obsessive-Compulsive Spectrum Work Group (Gttoc), James J Crowley, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Research specific to obsessive-compulsive disorder (OCD) among individuals of Hispanic and Latin American (H/L) ancestry is limited, as are culturally relevant assessment and treatment recommendations. This article discusses the implications of underrepresentation of H/L populations in OCD research and emphasizes the need to consider issues related to assessment, treatment, and structural barriers that hinder delivery of culturally appropriate first-line psychotherapy. Recommendations for assessment and treatment are provided to aid clinicians in distinguishing culturally normative thoughts and behaviors from OCD, as well as to inform the implementation of psychotherapeutic interventions with cultural humility. This manuscript offers recommendations for future research to …

Patient Perceptions On The Advancement Of Noninvasive Prenatal Testing For Sickle Cell Disease Among Black Women In The United States, Shameka P Thomas, Faith E Fletcher, Rachele Willard, Tiara Monet Ranson, Vence L Bonham

Center for Medical Ethics and Health Policy Staff Publications

Background: Noninvasive prenatal testing (NIPT) designed to screen for fetal genetic conditions, is increasingly being implemented as a part of routine prenatal care screening in the United States (US). However, these advances in reproductive genetic technology necessitate empirical research on the ethical and social implications of NIPT among populations underrepresented in genetic research, particularly Black women with sickle cell disease (SCD).

Methods: Forty (N = 40) semi-structured interviews were conducted virtually with Black women in the US (19 participants with SCD; 21 participants without SCD) from June 2021 to January 2022. We employed a qualitative approach to examine the …

Choosing Your “Healthiest” Embryo After Dobbs: Polygenic Screening And Distinctive Challenges For Truth In Advertising And Informed Consent, Dov Fox, Sonia Suter, Meghna Mukherjee, Stacey Pereira, Gabriel Lázaro-Muñoz

Center for Medical Ethics and Health Policy Staff Publications

Polygenic embryo screening ("PES") analyzes embryos for hundreds or thousands of genomic loci to generate risk scores that estimate genetic susceptibility to conditions and traits compared to the general population. The technology is commercially marketed directly to consumers. Companies focus mostly on medical conditions, sometimes in ways that oversell its advantages and efficacy, encouraging fertility patients to "choose your healthiest embryo" and "protect your future child from genetic risks." The advertising of PES trades on norms of children's health and good parenting and reinforces those normative ideals. While it is easy to assume PES will be constrained in practice by …

"A Double-Edged Sword": A Brief History Of Genomic Data Governance And Genetic Researcher Perspectives On Data Sharing, Kayte Spector-Bagdady, Kerry A Ryan, Amy L Mcguire, Chris D Krenz, M Grace Trinidad, Kaitlyn Jaffe, Amanda Greene, J Denard Thomas, Madison Kent, Stephanie Morain, David Wilborn, J Scott Roberts

Center for Medical Ethics and Health Policy Staff Publications

As the federal government continues to expand upon and improve its data sharing policies over the past 20 years, complex challenges remain. Our interviews with U.S. academic genetic researchers (n=23) found that the burden, translation, industry limitations, and consent structure of data sharing remain major governance challenges.

Law Enforcement Use Of Genetic Genealogy Databases In Criminal Investigations: Nomenclature, Definition And Scope, Oliver M Tuazon, Ray A Wickenheiser, Ricky Ansell, Christi J Guerrini, Gerrit-Jan Zwenne, Bart Custers

Center for Medical Ethics and Health Policy Staff Publications

Although law enforcement use of commercial genetic genealogy databases has gained prominence since the arrest of the Golden State Killer in 2018, and it has been used in hundreds of cases in the United States and more recently in Europe and Australia, it does not have a standard nomenclature and scope. We analyzed the more common terms currently being used and propose a common nomenclature: investigative forensic genetic genealogy (iFGG). We define iFGG as the use by law enforcement of genetic genealogy combined with traditional genealogy to generate suspect investigational leads from forensic samples in criminal investigations. We describe iFGG …

Insights From Social Media Into Public Perspectives On Investigative Genetic Genealogy, Sara Huston, Diana Madden, Andrea Villanes, Nathan Reed, Whitney Bash Brooks, Christopher Healey, Christi Guerrini

Center for Medical Ethics and Health Policy Staff Publications

Social media sites like X (formerly Twitter) increasingly serve as spaces for the public to discuss controversial topics. Social media can spark extreme viewpoints and spread biased or inaccurate information while simultaneously allowing for debate around policy-relevant topics. The arrest of Joseph J. DeAngelo in April 2018 ignited a barrage of social media conversations on how DNA and genetic genealogy led to the suspect. These conversations continued over the following years as policies changed and as the use of the approach expanded. We examined social media coverage of investigative genetic genealogy (IGG) to characterize the volume and temporal patterns in …

Racial And Ethnic Disparities In Acuity Of Presentation Among Children With Newly Diagnosed Acute Leukemia, Lena E Winestone, Kelly D Getz, Yimei Li, Evanette Burrows, Michael E Scheurer, Vicky Tam, M Monica Gramatges, Jennifer J Wilkes, Tamara P Miller, Alix E Seif, Karen R Rabin, Brian T Fisher, Richard Aplenc

Center for Medical Ethics and Health Policy Staff Publications

We evaluated disparities in disease burden, organ dysfunction, vital signs, and timing of therapy in children newly presenting with acute leukemia. Among 899 patients with acute leukemia diagnosed at two large children's hospitals, a priori lab-based definitions of high disease burden, infection risk, renal dysfunction, and coagulopathy were applied to electronic health record data. Black patients with acute myeloid leukemia had increased prevalence of elevated white blood cell count and uric acid; Black patients with acute lymphoblastic leukemia demonstrated increased prevalence of coagulopathy. Black patients' presentation more frequently included multiple lab abnormalities consistent with advanced physiologic dysfunction. No differences were …

Development Of A Multi-Level/Multi-Modal Intervention For Health Care Transition Preparation, Beth H Garland, Mary Majumder, Constance M Wiemann, Blanca Sanchez-Fournier, Jordyn Babla, Albert C Hergenroeder

Center for Medical Ethics and Health Policy Staff Publications

Aims: Health care transition (HCT) to adult care and young adult disease self-management is a multi-step process involving three major stakeholders - the adolescent, the caregiver, and the provider. Preparation gaps exist within each of these stakeholder groups. This paper presents the development of the Intervention to Promote Autonomy and Competence in Transition-aged Youth (IPACT), a multi-level (adolescent, caregiver, provider), multi-modal (interactive skill building sessions, educational materials, videos) intervention to address gaps in all three stakeholder groups simultaneously and help support achieving the three core elements of HCT planning.

Methods: Eight processes were utilized to develop the IPACT intervention, including …

Body. Freedom. Choice: Creating Artwork In Post-Roe America, Erin Sedra

Graduate Theses/Dissertations

I knew from a young age that I never wanted children. Whenever I expressed my disinterest in motherhood, I was often met with bewilderment, disapproval, and hostility. The church I was raised in taught me that my value and worth as a woman directly correlated with the power of my birthing hips. This fundamentalist upbringing has significantly shaped my relationship with my femininity, my body, and my artwork. When I feel powerless, turning to my art gives me a sense of control and self-expression. This body of work began as a reaction to the overturning of Roe v. Wade and …

Newborn Screening Analytes And Structural Birth Defects Among 27,000 Newborns, Philip J Lupo, Natalie P Archer, Rachel D Harris, Lisa K Marengo, Jeremy M Schraw, Adrienne T Hoyt, Susan Tanksley, Rachel Lee, Margaret Drummond-Borg, Debra Freedenberg, Priya B Shetty, A J Agopian, Charles Shumate, Sonja A Rasmussen, Peter H Langlois, Mark A Canfield

Center for Medical Ethics and Health Policy Staff Publications

Background: Emerging evidence suggests newborn screening analytes may yield insights into the etiologies of birth defects, yet no effort has evaluated associations between a range of newborn screening analytes and birth defects.

Methods: This population-based study pooled statewide data on birth defects, birth certificates, and newborn screening analytes from Texas occurring between January 1, 2007 and December 31, 2009. Associations between a panel of thirty-six newborn screening analytes, collected by the statewide Texas Newborn Screening Program, and the presence of a birth defect, defined as at least one of 39 birth defects diagnoses recorded by the Texas Birth Defects Registry, …

Reducing Food Scarcity: The Benefits Of Urban Farming, S.A. Claudell, Emilio Mejia

Journal of Nonprofit Innovation

Urban farming can enhance the lives of communities and help reduce food scarcity. This paper presents a conceptual prototype of an efficient urban farming community that can be scaled for a single apartment building or an entire community across all global geoeconomics regions, including densely populated cities and rural, developing towns and communities. When deployed in coordination with smart crop choices, local farm support, and efficient transportation then the result isn’t just sustainability, but also increasing fresh produce accessibility, optimizing nutritional value, eliminating the use of ‘forever chemicals’, reducing transportation costs, and fostering global environmental benefits.

Imagine Doris, who is …

The Federal Government Must Revise Public Housing Policies To Protect Vulnerable Populations From Evictions, Caroline Grabowski

Population Health Research Brief Series

Over 100,000 Americans are now dying from drug overdoses annually, signifying that the goal of the 1986 Anti-Drug Abuse Act (ADAA) to end illicit drug use has not been achieved. What’s more, numerous statutes within the ADAA have created or worsened housing instability among people who use drugs and their families. This is because the ADAA allows public housing officials to use their own discretion when determining evictions and lease refusals and has disproportionately harmed individuals in public housing who did not participate in the drug-related activities that led to their eviction. This brief describes how the ADAA negatively affects …

Policy Review And Recommendation For Secondary Education Np-Led Clinics In The Southeastern United States, Shiney Alex Jacob

Student Scholarly Projects

Secondary-level education involves adolescent children aged 11-12 years to 18-19 with unique healthcare needs. Their healthcare is of significant importance as they are transitioning to adulthood, and a majority of them lack access to primary healthcare needs. Advanced Practice Registered Nurses/Nurse Practitioners (APRNs/NPs) provide high-quality, cost-effective, and evidence-based care to people across the lifespan, and there is minimal utilization of their services in meeting the primary care needs of adolescents at the secondary school level. The purpose of the policy project was to determine if current policies and practices related to school health services in three southeastern states of the …

Bridging The Gap: Reducing Disparities In Reproductive Healthcare For Black And White Women, Emma Weiden

Population Health Research Brief Series

A woman’s reproductive healthcare experience in the United States can vary dramatically depending on her race. In 2020, the pregnancy-related mortality rate in the U.S. was 40.8 deaths per 100,000 live births for Black women, which is more than three times the rate among White women (12.7 per 100,000). This brief summarizes disparities in reproductive healthcare outcomes for Black women compared to White women in the U.S., advocates for policy changes, and provides recommendations for addressing racial disparities to create more equitable reproductive healthcare.

What The World Has Learned About Their Governments During The Covid-19 Pandemic, Olga Shvetsova

Political Science Faculty Scholarship

As we take stock of all aspects of the COVID-19 pandemic history, one important lesson to be learned concerns government behavior. While defense by immunity was in the works in vaccine research labs, defense by government action took the front seat, and political incumbents in every country and locale became "doctors to the public.” Did some governments perform better than others? Were there any predictable or explainable shortcomings in their crisis responses? Will governments and countries that underperformed in this crisis fall short in other crises where responsible leadership might be required? The contributors to this volume compare and contrast …

Commonalities And Differences In Governments’ Covid-19 Public Health Responses Around The World, Olga Shvetsova, Andrei Zhirnov

Political Science Faculty Scholarship

As the world enters the era of increased frequency of global health crises and natural disasters, with climate change looming as an ever-present threat, how we govern ourselves matters for the ways in which we will live through these difficult times. The authors in this volume provide observations backed by mixed methods of analysis on the many ways in which government organization and political realities affect crisis response and crisis management. In this chapter, we further strengthen the validity of their findings with large N global sample analyses where the timing and stringency of the adoption of public health policies …

Benefits Of Sharing Neurophysiology Data From The Brain Initiative Research Opportunities In Humans Consortium, Vasiliki Rahimzadeh, Kathryn Maxson Jones, Mary A Majumder, Michael J Kahana, Ueli Rutishauser, Ziv M Williams, Sydney S Cash, Angelique C Paulk, Jie Zheng, Michael S Beauchamp, Jennifer L Collinger, Nader Pouratian, Amy L Mcguire, Sameer A Sheth

Center for Medical Ethics and Health Policy Staff Publications

Sharing human brain data can yield scientific benefits, but because of various disincentives, only a fraction of these data is currently shared. We profile three successful data-sharing experiences from the NIH BRAIN Initiative Research Opportunities in Humans (ROH) Consortium and demonstrate benefits to data producers and to users.

Western Maine Addiction And Recovery Initiative's Substance Misuse Prevention And Wellness Day: Year 2 Feedback Survey For Mvhs, Tyler Egeland Ba, Evelyn Ali Bs, Mary Lindsey Smith Phd

Substance Use Research & Evaluation

As part of the evaluation of the Western Maine Addiction Recovery Initiative’s (WMARI) HRSA Rural Communities Opioid Response Program grant, staff from the Catherine Cutler Institute’s Substance Use Research and Evaluation team developed a survey to gather feedback from individuals who participate in substance misuse prevention and wellness events. Two separate PRE/POST surveys were deployed at Mountain Valley High School to assess knowledge gain, beliefs, and satisfaction. For more information, please contact Lindsey Smith at [email protected]

Western Maine Recovery Rally Feedback Survey, Evelyn Ali Bs, Tyler Egeland Ba, Mary Lindsey Smith Phd

Substance Use Research & Evaluation

The 7th Annual Western Maine Recovery Rally was hosted on September 17th, 2023 from 11am to 3pm in downtown Norway, Maine; several hundred people attended the event. The local evaluation team developed a survey with the goal of understanding how participants felt about the rally and how future events could be improved. The survey was deployed via QR code on paper materials distributed at the rally, and through social media after the event. For more information, please contact Lindsey Smith at [email protected]

Patient, Provider, And Interpreter Perspectives On Interpreter Modality And Barriers To Interpreter Use In A Pediatric Inpatient Setting, Brooklyn Leitch

Capstone Experience: Master of Public Health

There are a growing number of patients and families in the United States who use a language other than English (LOE). Standard of care for best patient outcomes requires that these families receive professional interpretation for every encounter, preferably in the interpreter modality that they are most comfortable with and that provides the best communication. Unfortunately, they often do not receive this. Objectives of this research include learning how interpreter services are selected and used as well as which modality (in-person, video, or phone) is preferred by patients and families, providers, and interpreters. We aim to better understand the experiences …

A Policy Evaluation For California’S Care Act And The Application Of The Social Determinants Of Health, Adelina Mercedes Lang

Capstone Experience: Master of Public Health

In 2022, California passed a legislative bill, SB 1338: the Community Assistance, Recovery, and Empowerment (CARE) Act, which created a new statewide procedure for treating mentally ill homeless adults diagnosed with psychotic disorders through a court-ordered CARE plan. SB 1338 intends to alleviate the mental health and homeless crisis. This capstone project provides an early assessment of SB 1338 using a modified formative policy evaluation methodology, including a scoping literature review and applying a policy assessment using the CDC's Policy Evaluation Framework. A stakeholder survey was also applied to gather stakeholders' perspectives on SB 1338. The literature review supported the …

The Impact Of The Covid-19 Pandemic On The Well-Being Of People Incarcerated In United States Prisons, Kimberly Rivera

Department of Sociology: Dissertations, Theses, and Student Research

The COVID-19 pandemic has negatively impacted the population as a whole. However, the incarcerated population (which also experiences a variety of health disparities) has been disproportionately affected by the pandemic. Due to overcrowding, poor ventilation, and lack of resources, the incarcerated population already is at a heightened risk for negative health outcomes, made worse by the recent pandemic. To adapt to the rapidly changing conditions during the pandemic in 2020 and into 2022, new safety measures were implemented, but the unintended consequences associated with the implementation of these procedures have yet to be examined empirically. I conducted a qualitative content …

Chinatown Outreach - Targeted Resources For The Unhoused Population, Jesus Herrera

Capstone Projects and Master's Theses

Addressing housing insecurities is one of The Epicenter’s pillars while utilizing a new federal grant. The Youth Homelessness Demonstration Program is the division implementing the project that will consist of outreach through a mobilization team. Housing insecurities are not only a city issue but a statewide one and YHDP is designed to help reduce those insecurities and improve a client’s quality of life while providing food, clothing, hygiene packs, and resource information to improve their livelihood. To assess the effectiveness of our deliverables it consisted of tallying, informal dialogues, and data analysis. The most important measure is that we were …