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Full-Text Articles in Bioethics and Medical Ethics

Cancerhervdb: Human Endogenous Retrovirus (Herv) Expression Database For Human Cancer Accelerates Studies Of The Retrovirome And Predictions For Herv-Based Therapies, Erik Stricker, Erin C Peckham-Gregory, Michael E Scheurer Jun 2023

Cancerhervdb: Human Endogenous Retrovirus (Herv) Expression Database For Human Cancer Accelerates Studies Of The Retrovirome And Predictions For Herv-Based Therapies, Erik Stricker, Erin C Peckham-Gregory, Michael E Scheurer

Center for Medical Ethics and Health Policy Staff Publications

In this study, we sought to create a database summarizing the expression of human endogenous retroviruses (HERVs) in various human cancers. HERVs are suitable therapeutic targets due to their abundance in the human genome, overexpression in various malignancies, and involvement in various cancer pathways. We identified articles on HERVs from PubMed and then prescreened and automatically categorized them using the portable document format (PDF) data extractor (PDE) R package. We discovered 196 primary research articles with HERV expression data from cancer tissues or cancer cell lines. HERV RNA and protein expression was reported in brain, breast, cervical, colorectal, endocrine, gastrointestinal, …


An Integrated Isothermal Nucleic Acid Amplification Test To Detect Hpv16 And Hpv18 Dna In Resource-Limited Settings, Kathryn A Kundrod, Maria Barra, Alexis Wilkinson, Chelsey A Smith, Mary E Natoli, Megan M Chang, Jackson B Coole, Akshaya Santhanaraj, Cesaltina Lorenzoni, Celda Mavume, Hira Atif, Jane Richards Montealegre, Michael E Scheurer, Philip E Castle, Kathleen M Schmeler, Rebecca R Richards-Kortum Jun 2023

An Integrated Isothermal Nucleic Acid Amplification Test To Detect Hpv16 And Hpv18 Dna In Resource-Limited Settings, Kathryn A Kundrod, Maria Barra, Alexis Wilkinson, Chelsey A Smith, Mary E Natoli, Megan M Chang, Jackson B Coole, Akshaya Santhanaraj, Cesaltina Lorenzoni, Celda Mavume, Hira Atif, Jane Richards Montealegre, Michael E Scheurer, Philip E Castle, Kathleen M Schmeler, Rebecca R Richards-Kortum

Center for Medical Ethics and Health Policy Staff Publications

High-risk human papillomavirus (HPV) DNA testing is widely acknowledged as the most sensitive cervical cancer screening method but has limited availability in resource-limited settings, where the burden of cervical cancer is highest. Recently, HPV DNA tests have been developed for use in resource-limited settings, but they remain too costly for widespread use and require instruments that are often limited to centralized laboratories. To help meet the global need for low-cost cervical cancer screening, we developed a prototype, sample-to-answer, point-of-care test for HPV16 and HPV18 DNA. Our test relies on isothermal DNA amplification and lateral flow detection, two technologies that reduce …


Cervical Cancer Screening Among English- And Spanish-Speaking Hispanic Women In An Urban Safety Net Health System, 2015–2020, Trisha L Amboree, Susan Lackey Parker, Shaun Bulsara, Matthew L Anderson, Kathleen M Schmeler, Elizabeth Y Chiao, Jane R Montealegre Jun 2023

Cervical Cancer Screening Among English- And Spanish-Speaking Hispanic Women In An Urban Safety Net Health System, 2015–2020, Trisha L Amboree, Susan Lackey Parker, Shaun Bulsara, Matthew L Anderson, Kathleen M Schmeler, Elizabeth Y Chiao, Jane R Montealegre

Center for Medical Ethics and Health Policy Staff Publications

Background: The Hispanic population is heterogeneous with differences in health behaviors across subgroups by nativity and preferred language. We evaluated cervical cancer screening adherence among English- and Spanish-speaking Hispanic patients receiving care at a safety net health system.

Methods: Electronic health records were used to identify 46,094 women aged 30-65. Up to date (UTD) screening was defined based on date of last Pap test, human papillomavirus (HPV) test, or Pap/HPV co-test.

Results: Overall, 81.5% of 31,297 Hispanic women were UTD. English-speaking Hispanic women had a lower prevalence of being UTD when compared to Spanish-speaking Hispanic women (aPR: 0.94, 95% CI: …


“Handicap Removed”: An Alternative Path To The Social Model, Craig M. Rustici Jun 2023

“Handicap Removed”: An Alternative Path To The Social Model, Craig M. Rustici

Journal of Gender, Ethnic, and Cross-Cultural Studies

This article identifies an expression of a social model of disability in a 1966 film promoting Hofstra University’s Program for the Higher Education of the Handicapped and traces that model back to books published by the pioneering rehabilitation physician Henry H. Kessler in 1935 and 1947, decades before the UPIAS (Union of the Physically Impaired against Segregation) Fundamental Principles of Disability (1976). In light of Kessler’s articulation of social and minority models, identification of contrasting religious, charity and medical models, and discussion of disability stigma, this article reassesses Ruth O’Brien’s critique, in Crippled Justice (2001), of Kessler and the twentieth-century …


Modeling The Longitudinal Changes Of Ancestry Diversity In The Million Veteran Program, Frank R Wendt, Gita A Pathak, Jacqueline Vahey, Xuejun Qin, Dora Koller, Brenda Cabrera-Mendoza, Angela Haeny, Kelly M Harrington, Nallakkandi Rajeevan, Linh M Duong, Daniel F Levey, Flavio De Angelis, Antonella De Lillo, Tim B Bigdeli, Saiju Pyarajan, John Michael Gaziano, Joel Gelernter, Mihaela Aslan, Dawn Provenzale, Drew A Helmer, Elizabeth R Hauser, Renato Polimanti, Department Of Veteran Affairs Cooperative Study Program (#2006) Jun 2023

Modeling The Longitudinal Changes Of Ancestry Diversity In The Million Veteran Program, Frank R Wendt, Gita A Pathak, Jacqueline Vahey, Xuejun Qin, Dora Koller, Brenda Cabrera-Mendoza, Angela Haeny, Kelly M Harrington, Nallakkandi Rajeevan, Linh M Duong, Daniel F Levey, Flavio De Angelis, Antonella De Lillo, Tim B Bigdeli, Saiju Pyarajan, John Michael Gaziano, Joel Gelernter, Mihaela Aslan, Dawn Provenzale, Drew A Helmer, Elizabeth R Hauser, Renato Polimanti, Department Of Veteran Affairs Cooperative Study Program (#2006)

Center for Medical Ethics and Health Policy Staff Publications

Background: The Million Veteran Program (MVP) participants represent 100 years of US history, including significant social and demographic changes over time. Our study assessed two aspects of the MVP: (i) longitudinal changes in population diversity and (ii) how these changes can be accounted for in genome-wide association studies (GWAS). To investigate these aspects, we divided MVP participants into five birth cohorts (N-range = 123,888 [born from 1943 to 1947] to 136,699 [born from 1948 to 1953]).

Results: Ancestry groups were defined by (i) HARE (harmonized ancestry and race/ethnicity) and (ii) a random-forest clustering approach using the 1000 Genomes Project and …


Correction To: Black Bioethics In The Age Of Black Lives Matter, Keisha Ray, Faith E Fletcher, Daphne O Martschenko, Jennifer E James Jun 2023

Correction To: 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.


Black Bioethics In The Age Of Black Lives Matter, Keisha Ray, Faith E Fletcher, Daphne O Martschenko, Jennifer E James Jun 2023

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.


Divergent Clinical Presentations And Outcomes Among Children And Adolescents With Kaposi Sarcoma In Malawi And Tanzania, Liane R Campbell, Allison Silverstein, Erin Peckham-Gregory, William Kamiyango, Jimmy Villiera, Casey L Mcatee, Jason M Bacha, Carrie L Kovarik, Parth S Mehta, Toni Chanroo, Asulwisye Kapesa, Beatrice Malingoti, Rizine Mzikamanda, Nmazuo W Ozuah, Carl E Allen, Michael E Scheurer, Nader K El-Mallawany Jun 2023

Divergent Clinical Presentations And Outcomes Among Children And Adolescents With Kaposi Sarcoma In Malawi And Tanzania, Liane R Campbell, Allison Silverstein, Erin Peckham-Gregory, William Kamiyango, Jimmy Villiera, Casey L Mcatee, Jason M Bacha, Carrie L Kovarik, Parth S Mehta, Toni Chanroo, Asulwisye Kapesa, Beatrice Malingoti, Rizine Mzikamanda, Nmazuo W Ozuah, Carl E Allen, Michael E Scheurer, Nader K El-Mallawany

Center for Medical Ethics and Health Policy Staff Publications

Objectives: The Kaposi sarcoma (KS) T0 versus T1 staging classification does not address the unique clinical features of paediatric KS in human gammaherpesvirus 8 (HHV-8) endemic regions of Africa. This study seeks to define patterns of childhood KS using a paediatric-specific approach.

Methods: The Lilongwe paediatric KS staging classification categorizes disease based on clinical phenotype: stage 1 = mild/moderate KS limited to cutaneous/oral involvement, stage 2 = primarily lymphadenopathic disease, stage 3 = woody edema KS, stage 4 = visceral and/or severe/disseminated mucocutaneous disease. Characteristics and outcomes were evaluated from paediatric referral centres in Lilongwe, Malawi, and Mbeya, Tanzania.

Results: …


Expanding Narrative Medicine Through The Collaborative Construction And Compelling Performance Of Stories, Woods Nash, Mgbechi Erondu, Andrew Childress Jun 2023

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 …


Social Creatures: The Impact Of Solitary Confinement On Psychophysiological Health And How Inmates Percieve Their Humanity And Social Well-Being, Julia Austin May 2023

Social Creatures: The Impact Of Solitary Confinement On Psychophysiological Health And How Inmates Percieve Their Humanity And Social Well-Being, Julia Austin

Honors Projects

This paper will define and examine the use of solitary confinement within the United States prison system and review its mental, physical, and social impacts. As social creatures, human mental and physical well-being depends on meaningful social interactions absent in segregation units. As it currently stands, vulnerable populations, including racial minorities, LGBTQIA+ individuals, and those with developmental disabilities or psychological disorders, are at risk of irrevocable harm and abuse within these facilities from staff as well as other inmates. With a rotating 80,000 inmates held in solitary confinement every day, the current structure of the prison system deemphasizes rehabilitation and …


Empathy And The Medical Student House Call: The Effect Of Clinical Settings On Empathy In Third Year Medical Students, Philip B. Collins, Thomas Dinzeo, Jennifer C. Sepede, John F. Bertagnolli, Christian White May 2023

Empathy And The Medical Student House Call: The Effect Of Clinical Settings On Empathy In Third Year Medical Students, Philip B. Collins, Thomas Dinzeo, Jennifer C. Sepede, John F. Bertagnolli, Christian White

Rowan-Virtua School of Osteopathic Medicine Departmental Research

OBJECTIVE: This study measured the effect the experience of house calls might have on third-year medical students.

METHODS: Students were surveyed via an anonymous online survey at the start of their geriatrics clerkship, again at the end of their clerkship, and once more three months later. Empathy was measured using the Jefferson Scale of Empathy - Student version (JSE) and student attitudes towards the geriatrics population was measured using the UCLA Geriatrics Attitudes Scale (GAS). Data were analyzed using SPSS version 27.0.

RESULTS: No changes in empathy were found when comparing students who completed house calls versus those who did …


At The End Of Life: Conceptualizing Human Dignity And Assisted Suicide Debates In Contemporary Germany, Edith-Marie Green May 2023

At The End Of Life: Conceptualizing Human Dignity And Assisted Suicide Debates In Contemporary Germany, Edith-Marie Green

Honors Theses

As medicine improves and breakthroughs on cures for illnesses formerly thought deadly continue to develop, the global population continues to age. This has introduced new concerns about aging and end-of-life health care. One proposed end-of-life healthcare solution is assisted suicide, although the practice is not without its controversies. The case of assisted suicide in Germany is of particular interest for a variety of reasons, and the practice has not had an easy path there. A series of debates in 2015 led to the practice being banned, but that ban was overturned in 2020 by Germany’s Constitutional Court. While assisted suicide …


The Ethical Contribution Of Cultural Diversity As A Social Determinant Of Health, Pooja Patel May 2023

The Ethical Contribution Of Cultural Diversity As A Social Determinant Of Health, Pooja Patel

Electronic Theses and Dissertations

The dissertation examines how cultural diversity as a social determinant of health, aligned with human life, human dignity, human rights, and human equity provides an ethical contribution. My explanation of the ethical contribution of cultural diversity as a SDOH refers to a quadrant of topics that expands the approach of the UNESCO Declaration of Bioethics and Human Rights. The UNESCO approach addresses cultural diversity in relation to human dignity and human rights. I adopt a quadrant of topics that aligns human dignity with human life and human rights with equity. Aligning these topics in the quadrant (dignity/life and rights/equity) explains …


The Ethics Of Governance Of Data Analytics In Healthcare, Andrew Harrington May 2023

The Ethics Of Governance Of Data Analytics In Healthcare, Andrew Harrington

Electronic Theses and Dissertations

Recent literature and studies on data governance usually focus on data ethics and governance from a specific country or industry, which has been mostly business, without considering the larger global impact that is affected. Data is a worldwide asset; thus, its implications and considerations should be viewed as such. Hence, this dissertation attempts to incorporate this view by weaving together topics in healthcare, such as the blending of finance and delivery, data governance at the micro and macro levels, data analytics in healthcare, ethics of AI and information management, and technology’s impact on end-of-life practices. Through highlighting these areas of …


Evaluation Of Available Medical Interpretation Resources Available To Spanish-Speaking Patients In Nj Ahec Counties, Magdalene Lederer, Cindy Nativi, Madhav Patel, Joseph Mendoza, Nhi Tran, Yesha Patel, Melissa Vincent, Rebecca Moore May 2023

Evaluation Of Available Medical Interpretation Resources Available To Spanish-Speaking Patients In Nj Ahec Counties, Magdalene Lederer, Cindy Nativi, Madhav Patel, Joseph Mendoza, Nhi Tran, Yesha Patel, Melissa Vincent, Rebecca Moore

Rowan-Virtua Research Day

According to the US Census Bureau Spanish is the most common non-English language spoken in the US. Despite the growing population of Spanish-speaking individuals, most healthcare providers can only communicate in English. Linguistic differences between patients and providers have been identified to impact the quality of care received, therefore, it is not surprising that Spanish-speaking patients have been found to be less satisfied with healthcare. Language barriers in healthcare lead to poor compliance and underuse of services which eventually negatively impact health outcomes. Several studies found that the most effective communication tools are often underutilized, with healthcare providers relying on …


Healthcare Disparities In The Lgbtqia+ Community: A Scoping Review Of Community Vs Provider Experiences, Uttara Hardikar, Alisha Vincent, Venkateswar Venkataman, Millicent Channell May 2023

Healthcare Disparities In The Lgbtqia+ Community: A Scoping Review Of Community Vs Provider Experiences, Uttara Hardikar, Alisha Vincent, Venkateswar Venkataman, Millicent Channell

Rowan-Virtua Research Day

Background: It is well-established that healthcare disparities exist in the LGBTQIA+ community. The divide is a growing concern exacerbated by recent changes in the healthcare and sociopolitical climate. To eliminate this divide and find ways to deliver better outcomes to the LGBTQIA+ is a dire need. This report analyzes the possible reasons from the community as well as the providers perspective, with a goal to find best practices that could be implemented in both components.

Methods: A scoping literature review was carried out as described below to collect perspectives from both sides: patients as well as providers.

Results: From patient …


Maldi-Tof Ms Based Proteomic Fingerprinting Of Total Serum Plasma For Somatic Pain Syndromes, Isaiah Pinkerton, Venkateswar Venkataraman May 2023

Maldi-Tof Ms Based Proteomic Fingerprinting Of Total Serum Plasma For Somatic Pain Syndromes, Isaiah Pinkerton, Venkateswar Venkataraman

Rowan-Virtua Research Day

There are racial and ethnic disparities regarding pain management within the United States, and that disproportionately affects women of color. There is also a fundamental lack of information regarding the biological mechanism by which pain sensitization and perception occurs, and how it could be affected by both neurologic and somatic pain syndromes.

Methods: Research was performed on principal electronic scientific databases including Google Scholar, PubMed, and Embase with search terms “MALDI-TOF”, “ESI-MS”, “Pain”, and “Biomarkers”, as well as other modifiers to narrow the literature search.

Results: Studies on comparison between MALDI-TOF and other traditional analysis platforms, including Electrospray Ionization (ESI-MS), …


Ethical Hazards Of Health Data Governance In The Metaverse, Kristin Kostick-Quenet, Vasiliki Rahimzadeh May 2023

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 Apr 2023

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 Apr 2023

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 …


Peer-Supervision Of Nursing Professionals: A Shield Against Burnout, Kyle Gamache, Sarah Gamache, Joseph Robillard Apr 2023

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 …


Public Opinion And Support On Physician Assisted Suicide, Emma Gottschalk Apr 2023

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 Apr 2023

"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 …


Moral Injury To Inform Analysis Of Post-Traumatic Stress Disorder, Amanda Julia Manea Apr 2023

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 …


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 Apr 2023

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 …


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 Apr 2023

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 Apr 2023

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 …


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 Apr 2023

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 Apr 2023

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 …


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 Mar 2023

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 …