Bioethics and Medical Ethics Commons^™

A Meta-Analysis Of Diagnostic Yield And Clinical Utility Of Genome And Exome Sequencing In Pediatric Rare And Undiagnosed Genetic Diseases, Rajshree Pandey, Noemi Fluetsch Brennan, Kalliopi Trachana, Sarah Katsandres, Olaf Bodamer, John Belmont, David L Veenstra, Siyang Peng

Center for Medical Ethics and Health Policy Staff Publications

Purpose: To systematically evaluate the diagnostic yield and clinical utility of genome sequencing (GS) and exome sequencing (ES; genome-wide sequencing [GWS]) in pediatric patients with rare and undiagnosed genetic diseases.

Methods: We conducted a meta-analysis of studies published between 2011 and 2023. To address study heterogeneity, comparative analyses included within-cohort studies using random-effects models.

Results: We identified 108 studies including 24,631 probands with diverse clinical indications. The pooled diagnostic yield among within-cohort studies (N = 13) for GWS was 34.2% (95% CI: 27.6-41.5; I2: 86%) vs 18.1% (95% CI: 13.1-24.6; I2: 89%) for non-GWS, with 2.4-times odds of diagnosis (95% …

International Society For Cell & Gene Therapy Expanded Access Working Group Position Paper: Key Considerations To Support Equitable And Ethical Expanded Access To Investigational Cell- And Gene-Based Interventions, Elena Maryamchik, Laertis Ikonomou, Beth E Roxland, Felix Grignon, Bruce L Levine, Bambi J Grilley

Center for Medical Ethics and Health Policy Staff Publications

This position paper reviews the Expanded Access pathway for cell and gene therapies, examining its critical role at the nexus of patient need, regulatory frameworks, and scientific advancement. Spearheaded by the International Society for Cell & Gene Therapy's Expanded Access Working Group, it explores how investigational therapies are accessed outside of clinical trials for patients with serious or life-threatening conditions when no approved alternatives exist. Access to cell and gene therapy products are of specific interest to patients because many times the products are bespoke, being used to treat serious and/or incurable conditions, and are potentially curative. As the field …

Detection Of Enterovirus Rna In Pancreas And Lymphoid Tissues Of Organ Donors With Type 1 Diabetes, Jutta E Laiho, Sami Oikarinen, Sofia Morfopoulou, Maarit Oikarinen, Ashlie Renner, Daniel Depledge, Matthew C Ross, Ivan C Gerling, Judith Breuer, Joseph F Petrosino, Vincent Plagnol, Alberto Pugliese, Antonio Toniolo, Richard E Lloyd, Heikki Hyöty, Npod-Virus Group

Center for Medical Ethics and Health Policy Staff Publications

Aims/hypothesis: The nPOD-Virus group collaboratively applied innovative technologies to detect and sequence viral RNA in pancreas and other tissues from organ donors with type 1 diabetes. These analyses involved the largest number of pancreas samples collected to date. The aim of the current work was to examine the presence of enterovirus RNA in pancreas and lymphoid tissues of organ donors with and without type 1 diabetes.

Methods: We analysed pancreas, spleen, pancreatic lymph nodes and duodenum samples from the following groups: (1) donors with type 1 diabetes (n=71) with (n=35) or without (n=36) insulin-containing islets; (2) donors with single or …

Genome-Wide Analyses Identify 30 Loci Associated With Obsessive-Compulsive Disorder, Nora I Strom, Zachary F Gerring, Marco Galimberti, Dongmei Yu, Matthew W Halvorsen, Abdel Abdellaoui, Cristina Rodriguez-Fontenla, Julia M Sealock, Tim Bigdeli, Jonathan R Coleman, Behrang Mahjani, Jackson G Thorp, Katharina Bey, Christie L Burton, Jurjen J Luykx, Gwyneth Zai, Silvia Alemany, Christine Andre, Kathleen D Askland, Julia Bäckman, Nerisa Banaj, Cristina Barlassina, Judith Becker Nissen, O Joseph Bienvenu, Donald Black, Michael H Bloch, Sigrid Børte, Rosa Bosch, Michael Breen, Brian P Brennan, Helena Brentani, Joseph D Buxbaum, Jonas Bybjerg-Grauholm, Enda M Byrne, Judit Cabana-Dominguez, Beatriz Camarena, Adrian Camarena, Carolina Cappi, Angel Carracedo, Miguel Casas, Maria Cristina Cavallini, Valentina Ciullo, Edwin H Cook, Jesse Crosby, Bernadette A Cullen, Elles J De Schipper, Richard Delorme, Srdjan Djurovic, Jason A Elias, Xavier Estivill, Martha J Falkenstein, Bengt T Fundin, Lauryn Garner, Christina Gironda, Fernando S Goes, Marco A Grados, Jakob Grove, Wei Guo, Jan Haavik, Kristen Hagen, Kelly Harrington, Alexandra Havdahl, Kira D Höffler, Ana G Hounie, Donald Hucks, Christina Hultman, Magdalena Janecka, Eric Jenike, Elinor K Karlsson, Kara Kelley, Julia Klawohn, Janice E Krasnow, Kristi Krebs, Christoph Lange, Nuria Lanzagorta, Daniel Levey, Kerstin Lindblad-Toh, Fabio Macciardi, Brion Maher, Brittany Mathes, Evonne Mcarthur, Nathaniel Mcgregor, Nicole C Mclaughlin, Sandra Meier, Euripedes C Miguel, Maureen Mulhern, Paul S Nestadt, Erika L Nurmi, Kevin S O'Connell, Lisa Osiecki, Olga Therese Ousdal, Teemu Palviainen, Nancy L Pedersen, Fabrizio Piras, Federica Piras, Sriramya Potluri, Raquel Rabionet, Alfredo Ramirez, Scott Rauch, Abraham Reichenberg, Mark A Riddle, Stephan Ripke, Maria C Rosário, Aline S Sampaio, Miriam A Schiele, Anne Heidi Skogholt, Laura G Sloofman, Jan Smit, María Soler Artigas, Laurent F Thomas, Eric Tifft, Homero Vallada, Nathanial Van Kirk, Jeremy Veenstra-Vanderweele, Nienke N Vulink, Christopher P Walker, Ying Wang, Jens R Wendland, Bendik S Winsvold, Yin Yao, Hang Zhou, Estonian Biobank, 23andme Inc, Arpana Agrawal, Pino Alonso, Götz Berberich, Kathleen K Bucholz, Cynthia M Bulik, Danielle Cath, Damiaan Denys, Valsamma Eapen, Howard Edenberg, Peter Falkai, Thomas V Fernandez, Abby J Fyer, J M Gaziano, Dan A Geller, Hans J Grabe, Benjamin D Greenberg, Gregory L Hanna, Ian B Hickie, David M Hougaard, Norbert Kathmann, James Kennedy, Dongbing Lai, Mikael Landén, Stéphanie Le Hellard, Marion Leboyer, Christine Lochner, James T Mccracken, Sarah E Medland, Preben B Mortensen, Benjamin M Neale, Humberto Nicolini, Merete Nordentoft, Michele Pato, Carlos Pato, David L Pauls, John Piacentini, Christopher Pittenger, Danielle Posthuma, Josep Antoni Ramos-Quiroga, Steven A Rasmussen, Margaret A Richter, David R Rosenberg, Stephan Ruhrmann, Jack F Samuels, Sven Sandin, Paul Sandor, Gianfranco Spalletta, Dan J Stein, S Evelyn Stewart, Eric A Storch, Barbara E Stranger, Maurizio Turiel, Thomas Werge, Ole A Andreassen, Anders D Børglum, Susanne Walitza, Kristian Hveem, Bjarne K Hansen, Christian Rück, Nicholas G Martin, Lili Milani, Ole Mors, Ted Reichborn-Kjennerud, Marta Ribasés, Gerd Kvale, David Mataix-Cols, Katharina Domschke, Edna Grünblatt, Michael Wagner, John-Anker Zwart, Gerome Breen, Gerald Nestadt, Jaakko Kaprio, Paul D Arnold, Dorothy E Grice, James A Knowles, Helga Ask, Karin J Verweij, Lea K Davis, Dirk J Smit, James J Crowley, Jeremiah M Scharf, Murray B Stein, Joel Gelernter, Carol A Mathews, Eske M Derks, Manuel Mattheisen

Center for Medical Ethics and Health Policy Staff Publications

Obsessive-compulsive disorder (OCD) affects ~1% of children and adults and is partly caused by genetic factors. We conducted a genome-wide association study (GWAS) meta-analysis combining 53,660 OCD cases and 2,044,417 controls and identified 30 independent genome-wide significant loci. Gene-based approaches identified 249 potential effector genes for OCD, with 25 of these classified as the most likely causal candidates, including WDR6, DALRD3 and CTNND1 and multiple genes in the major histocompatibility complex (MHC) region. We estimated that ~11,500 genetic variants explained 90% of OCD genetic heritability. OCD genetic risk was associated with excitatory neurons in the hippocampus and the cortex, along …

Joint Analysis Of The Npod-Virus Group Data: The Association Of Enterovirus With Type 1 Diabetes Is Supported By Multiple Markers Of Infection In Pancreas Tissue, Sarah J Richardson, Teresa Rodriguez-Calvo, Jutta E Laiho, John S Kaddis, Julius O Nyalwidhe, Irina Kusmartseva, Sofia Morfopoulou, Joseph F Petrosino, Vincent Plagnol, Kathrin Maedler, Margaret A Morris, Jerry L Nadler, Mark A Atkinson, Matthias Von Herrath, Richard E Lloyd, Heikki Hyoty, Noel G Morgan, Alberto Pugliese, Npod-Virus Group

Center for Medical Ethics and Health Policy Staff Publications

Aims/hypothesis: Previous pathology studies have associated enterovirus infections with type 1 diabetes by examining the enterovirus capsid protein 1 (VP1) in autopsy pancreases obtained near diabetes diagnosis. The Network for Pancreatic Organ Donors with Diabetes (nPOD) has since obtained pancreases from organ donors with type 1 diabetes (with broad age and disease duration) and donors with disease-associated autoantibodies (AAbs), the latter representing preclinical disease. Two accompanying manuscripts from the nPOD-Virus Group report primary data from a coordinated analysis of multiple enterovirus indices. We aimed to comprehensively assess the association of multiple enterovirus markers with type 1 diabetes.

Methods: The nPOD-Virus …

It Is Not Clear How Well Physical Activity Promotion Materials Are Understood: Findings From A Rapid Literature Review, Jafra D. Thomas, Jasmine C. Wong, Regina F. Hockert, Yi Sheng Wu, Winston Kennedy

Topics in Exercise Science and Kinesiology

Topics in Exercise Science and Kinesiology Volume 6: Issue 1, Article 6, 2025. Efforts to promote physical activity and other health-related behaviors are more effective when resource materials are understood by a wide and diverse audience. Before our lab’s previous investigations (Thomas et al., 2024), only one study seemed to use the cloze procedure to directly test the comprehension (i.e., readability) of physical activity promotion material (Cardinal & Seidler, 1995). Thus, this rapid literature review sought to (a) determine the extent the cloze procedure has been used to study physical activity promotion material comprehension in lay adults and (b) collate …

The Global Clinical Trials Ecosystem: A Critical Evaluation And Future Outlook, Sydney-Ariel D. Muneses

Undergraduate Honors Theses

As global clinical trials expand, inconsistencies in regulatory and ethical frameworks are increasingly evident, raising concerns about economic sustainability and participant protections. Existing research attributes this surge to pharmaceutical companies seeking cost efficiencies in emerging markets but acknowledges the challenges posed by fragmented oversight across international jurisdictions. To examine these limitations, a modified Delphi approach was used to gather expert insights from key stakeholders in global clinical trials. Findings highlighted systemic inefficiencies and ethical gaps, emphasizing the need for regulatory harmonization to balance scientific rigor, economic feasibility, and equitable participant treatment. By identifying critical shortcomings and proposing strategies to align …

Science Tikkun: A Bioscience Pandemic Framework In A Hebrew Tradition Of Global Repair, Peter Hotez

Center for Medical Ethics and Health Policy Staff Publications

Over the past decade we have seen a steady increase in dangerous pandemic threats. They include two major Ebola epidemics and cholera in Africa; dengue, Zika, yellow fever in the Americas; a COVID-19 pandemic; and H5N1 in Texas. This is happening because of a confluence of modern forces including urbanization, deforestation, and climate change. Yet as pandemics emerge on a crowded and warming planet, anti-science disinformation and antisemitism impede our response. Science tikkun is an overarching framework for repair and redress. It honors the legacy of Maimonides, Teilhard de Chardin, and others who have sought reconciliation between science and religion.

Intraoperative Code Status: Moving From Misinformation To Respect For Patient Autonomy, Jacob Applegarth, Nathan M. Novotny, Ngan Nguyen, Abram Brummett

Conference Presentation Abstracts

No abstract provided.

Should Physicians Take The Rap? Normative Analysis Of Clinician Perspectives On Responsible Use Of 'Black Box' Ai Tools, Ben H Lang, Kristin Kostick-Quenet, Jared N Smith, Meghan Hurley, Rita Dexter, Jennifer Blumenthal-Barby

Center for Medical Ethics and Health Policy Staff Publications

Background: Increasing interest in deploying artificial intelligence tools in clinical contexts has raised several ethical questions of both normative and empirical interest. One such question in the literature is whether "responsibility gaps" (r-gaps) are created when clinicians utilize or rely on such tools for providing care, and if so, what to do about them. These gaps are particularly likely to arise when using opaque, "black box" AI tools. Compared to normative and legal analysis of AI-generated responsibility gaps in health care, little is known, empirically, about health care providers views on this issue. The present study examines clinician perspectives on …

The Contribution Of Catholic Compromise Principles In Global Health, Scott N. Helstad

Electronic Theses and Dissertations

The Roman Catholic tradition has developed comprehensive ethical principles to address complex practical scenarios that encounter foundational value compromises. These are referred to as compromise principles and they have both a narrow and a broad focus. Narrowly, these compromise principles are critical for Catholic healthcare organizations in the United States with regard to the guidelines of the US Bishops in their Ethical and Religious Directives for Catholic Health Care Services. More broadly, these compromise principles are relevant in the secular realm regarding global health. This dissertation examines these varying perspectives, hence its title, “The Contribution of Catholic Compromise Principles …

Hospital Organizations’ Obligation To Promote Spiritual Well-Being Among Nurses: Development Of A Normative Ethical Argument, Michael Jordan

Electronic Theses and Dissertations

This dissertation presents an innovative strategy to promote the support of nurses' spirituality within hospital organizations. By focusing on the spiritual well-being of nurses by hospital organizations, with a natural extension into nursing schools, the approach aims to enhance nurse’s ability to protect their own spirituality, provide comprehensive spiritual care to patients, and increase nurse moral resilience. By investing in nurses' spirituality and spiritual growth, hospitals can potentially increase job satisfaction among nursing staff, improve patient care outcomes, and create a more holistic healing environment for both nurses and patients. As the nursing shortage continues and the number of nurses …

The Ethical Imperative Of The Renewal Of Virtue Within The Moral Community Of Catholic Healthcare, Amanda Altobell

Electronic Theses and Dissertations

Catholic healthcare is one of the largest nonprofit organizations and providers in the United States, offering medical care to many diverse communities. The fundamental mission of Catholic healthcare is to bring about Christ’s healing ministry and live out the fundamental principle of caring for the vulnerable in pursuit of the common good. However, there have been many missteps, not only due to a more polarized and secular community but also to scandals and conflict due to previous hierarchical and rules-based anthropology that often misses the person's lived experience. Therefore, this dissertation will argue that for Catholic healthcare to survive the …

Survey Of Medical Student Attitudes Regarding Uterine Transplant For Cisgender And Transgender Women: An Observational Study, Brandon Kim, Deidre Hurse, Abram Brummett

Conference Presentation Abstracts

Purpose: This study wishes to survey medical students’ attitudes regarding legality of, funding for, and conscientious objection to uterine transplant (UTx) in cisgender and transgender women. Methods: Medical students were invited to complete an online anonymous survey from March 18, 2024 to April 1, 2024. Baseline demographics collected, and four-point Likert scales were used on four pairs of questions to evaluate attitudes regarding UTx for cisgender and transgender women. Subject responses to paired questions were analyzed using Fisher’s Exact Test. Strength of correlation between the paired questions were analyzed with Spearman’s Correlation. Results: A total of 96 responses were collected …

Exploring Sexual Consent Capacity And Sexual Expression In Older Adults Living With Dementia, Renee J Flores, Carlos A Reyes-Ortiz

Faculty and Staff Publications

No abstract provided.

A Survey Of Factors Affecting Students Ethical Attitude Toward Medical Disobedience, Quinn Simpson, Jason Adam Wasserman

Posters

• Government regulations, particularly post-Roe v. Wade, create ethical conflicts for physicians between patient care and legal constraints.¹
• Decisions influenced by external pressures can negatively affect patient health.¹

Examining The Spiritual Care Needs Of Patients Preceding In-Hospital Death, Kevin A. Van, Kevin Hickey

Posters

- Evaluating the spiritual care needs of dying patients within the hospital setting is not a well-developed area of research

- Patients who die within the hospital present varied spiritual and emotional needs that require an array of support strategies from a spiritual care (SC) standpoint

- There is insufficient quantifiable data on specific patient needs and interventions provided through SC, especially among end-of-life (EOL) patients

Changes In Medical Student’S Knowledge And Attitudes Toward Clinical Death After Teaching The Philosophy Of Death, Nicholas Ludka, Abram Brummett, Jason Adam Wasserman

Posters

The pluralism of views that surround death, both within the bioethics community and society as a whole, can be a source of frustration for medical students and physicians who encounter surrogate decision makers who deny the standard medicolegal view of death. There are large gaps in knowledge regarding brain death among medical students, likely due to the lack of educational initiatives and the reliance of media for information, which often portrays inaccurate descriptions of brain death. 1 Despite the growing literature on the inadequacy of medical students’ knowledge of brain death, there has yet to be investigation into students’ attitudes …

Exploring Spirituality Rounds: A Reflective Inquiry Among Chaplains And Medical Students, Jessica Krone, Kevin Hickey

Posters

• Medical schools aim to educate their students on about social factors that impact patient health, including spirituality.
• Medical school curriculums have various approaches to spiritual care education, with some using modules and others using inperson experiences. 1,2.
• “Spirituality Rounds”, a half-day experience for third year medical students, is a component of OUWB’s curriculum that allows students to shadow and learn from hospital chaplains.
• This experience has not yet been evaluated; therefore, this research will gather student and chaplain reflections to help determine if this is a beneficial experience, and if it should be recommended to be included in medical education …

Veracity Enhancement Using Non-Invasive Brain Stimulation: A Systematic Review, Alice Hou, Shahrukh Naseer, Abram Brummett

Posters

For decades, non-invasive brain stimulation (NIBS) techniques like Transcranial Magnetic Stimulation (TMS) and Transcranial directcurrent stimulation (tDCS) have been used in clinical settings as forms of neuromodulatory treatment for depression and other neurodivergent disorders. In recent years, there has been increased research in utilizing the non-invasive techniques to enhance cognition beyond one’s baseline, including language, memory, moral, and veracity enhancements. Due to the lack of systematic reviews in the growing field of veracity enhancement, we aim to provide a concise, summative overview of current research studying the impacts of NIBS on truthfulness, as well as its ethical dilemmas and future …

Characteristics, Policies, And Practices Of Clinical Ethics Fellowship Programs, Amanda Bachand, Ellen Fox, Jason Adam Wasserman

Posters

• While clinical ethics fellowship programs are now commonplace in U.S. hospitals, recent research has revealed significant problems including a shortage of personnel who are appropriately trained to perform ethics consultation, lack of access to high quality training for ethics consultants, and lack of funding for clinical ethics training.1

• Our goal was to accurately describe the characteristics, policies, and practices of existing clinical ethics fellowship programs in the U.S. and Canada as well as the opinions of clinical ethics fellowship program directors regarding program standards, accreditation, and funding through a robust questionnaire.

• This project focused specifically on the …

Exploring Anticoagulant Prescription Disparities: A Focus On Hispanic Patient Care, Michael Acevedo, Vanessa Veltre

Rowan-Virtua Research Day

Anticoagulants play a critical role in preventing thromboembolic events, yet disparities persist in their prescription among minority populations. This presentation explores inequities in anticoagulant prescribing patterns, with a specific focus on Hispanic patient care. Using retrospective electronic health record data, we analyzed the prescription rates of warfarin versus direct oral anticoagulants (DOACs) among adults with clinical indications for anticoagulation. Our findings reveal that Hispanic patients are significantly less likely to receive DOACs compared to non-Hispanic White patients, even after adjusting for demographics, comorbidities, and insurance status. Contributing factors include language barriers, lack of insurance, and potential implicit bias in provider …

End-Of-Life Volunteerism: An Analysis Of No One Dies Alone (Noda) Program Volunteers, Kristin Sarsfield, Kevin Hickey

Posters

The inception of hospice in the United Kingdom during the mid 20th century marked a focal point in medical care for dying individuals. Hospice founder Cicely Saunders wanted to maintain a balance of “the sophisticated science of our treatments with the art of our caring, bringing competence alongside compassion”.1 Since then, hospice has grown into a household term for end of-life medical care.

Organized care for terminally ill and dying individuals was further developed in 2001 by Sandra Clarke, CCRN. Clarke founded the No One Dies Alone (NODA) Program after being unable to fulfill a dying patient’s wish of end-of-life …

I Am (Me)Dicine: An Analysis On The Influence Of Humanities Courses Within The Construction Of Internal And External Identities Within Pre-Med Students At Uno, Alix Barnes

Theses/Capstones/Creative Projects

The purpose of this project is to investigate how arts and humanities coursework may enhance the development of internal and external identities for premedical students beyond their traditional scientific coursework. A literature review shows positive findings on identity development and the influence of arts and humanities coursework on medical education. This investigation will take place through a mixed-method survey distributed to UNO premedical students and will explore themes of self-reflection, personal and professional growth, and understanding of external perspectives. An optional question prompts respondents to reflect further on their work within arts and humanities courses and their impact on these …

On Death And Disease: How Physicians’ Perspectives Compare Across Specialties Through Written Work, Stephanie Anne C. Alkonga

Honors Capstones

Narrative medicine is a tool that the medical field is increasingly utilizing to cultivate patient-centered and culturally competent doctors and to reflect on lived experiences through texts that focus on psychosocial best practices. This study aims to examine the language used in physician-written works that address how physicians in different medical specialties treat the aging and the terminally ill, and how they view the deceased. Qualitative data guided by thematic questions will primarily be used in the analysis and comparison of these texts’ tone, rhetoric, diction, and similar literary devices to uncover if certain patterns arise across such specialties. Findings …

Heterotopias Of Confinement: Zoo Architecture And The Loss Of Elephant Agency, Clayton Gill Beasley

Electronic Theses and Dissertations

Zoos functions as a site where human-animal relationships are structured through built environments that mediate control and representation. This study examines zoos as heterotopias—spaces where power and surveillance are negotiated between human observers and captive nonhuman animals. While zoos are often framed as spaces of conservation and education, their architectural design reinforces hierarchies of observation and confinement, shaping both human perceptions of nature and the lived experiences of nonhuman animals. This research focuses on Asian elephants as a critical species within this framework, exploring how their captivity illuminates tensions between human-imposed structures and nonhuman autonomy. Drawing from theories of heterotopia, …

Am I Woke Enough To Serve In Healthcare: A Secondary Analysis Of Pre-Health Students’ Personal And Professional Growth By Engaging In Cultural Competency Assessments, Harolynn Williams

All Dissertations

Healthcare providers must be equipped to serve an increasingly diverse population, yet cultural competence remains underemphasized in undergraduate pre-health education. This study explored how embedded cultural competency training influences undergraduate pre-health students’ perceptions of personal and professional growth. Using a qualitative descriptive design, the research incorporated intercultural assessments, the Intercultural Development Inventory (IDI), and the Global Competence Certificate (GCC), along with qualitative reflections from students enrolled in three versions of a cultural competence course: a year-long course, a semester-long course, and a short-term study abroad immersion six-week course. Findings revealed that students demonstrated measurable growth in cultural awareness, knowledge, communication, …

The State Of Abortion Training In Medical School And Family Medicine Residency Curricula: A Scoping Literature Review, Eric James Reece

Capstone Experience: Master of Public Health

This project aims to assess how abortion education has been integrated into medical training over the past decade, with a particular focus on understanding its current state in medical schools and family medicine residencies, including those offering specialized programs affiliated with RHEDI (Reproductive Health Education in Family Medicine) and TEACH (Training in Early Abortion for Comprehensive Healthcare). Given the ever-evolving legal landscape following the June 4^th, 2022 Supreme Court case of Dobbs v. Jackson Women’s Health Organization, this review explores how both federal- and state-level legal restrictions impact access to abortion training and attempts to identify gaps …

How Do Parents Decide On Genetic Testing In Pediatrics? A Systematic Review, Elena Sophia Doll, Seraina Petra Lerch, Katja Maria Schmalenberger, Karla Alex, Stefan Kölker, Heiko Brennenstuhl, Stacey Pereira, Hadley Smith, Eva Caroline Winkler, Julia Mahal, Beate Ditzen

Center for Medical Ethics and Health Policy Staff Publications

Purpose: This systematic review aims to identify the factors that influence parents' decisions regarding pediatric diagnostic genetic testing (DT) and predictive genetic testing (PT). These factors are integrated into a conceptual decision-making model. Implications for genetic counseling, research, and ethics were derived.

Methods: PubMed, PsychInfo, WebofScience, and related references were searched for original publications between 2000 and 2023. The extracted factors were categorized using existing models.

Results: Of the 5843 publications, 56 met the inclusion criteria. The included studies differentiated between DT, traditional PT, and expanded PT and described factors affecting parental decisions to have the child genetically tested and …

Experiences Of Women In The Labour Room: The Untold Story, Emmanuel Dziwornu, Belinda Kpodo, Ophelia Anarfi, Enyonam Afi Adzato, Anita Fafa Dartey

Patient Experience Journal

Background: Childbirth experiences are some of the most sensitive indicators of the utilisation of health facilities. Women who go through the child-birthing process are reported to be faced with a range of experiences. Aim: This study described women's experiences in the labour room. Methods: The study employed a qualitative research approach with a descriptive design. Purposive sampling was used in this study and data saturation was reached after the 18^th participant. In-depth interviews were used to obtain information from recently delivered women. Interviews were audio recorded and transcribed verbatim. Thematic content analysis (TCA) was done and the results were …