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Articles 112201 - 112230 of 113010
Full-Text Articles in Entire DC Network
Glp-1 Agonists For Pediatric Obesity: A Clinical Review, Grace Burgin
Glp-1 Agonists For Pediatric Obesity: A Clinical Review, Grace Burgin
The PA Department Journal of Medical Science
Introduction: Pediatric obesity is a chronic disease with multiple complex causes and many potential consequences if carried into adulthood. Lifestyle modifications alone have not been effective for all patients in the treatment of pediatric obesity. GLP-1 RAs already being prescribed in the adult population were also recently approved for pediatric patients. The purpose of this clinical review is to analyze the efficacy of GLP-1 RAs in decreasing markers associated with obesity, such as BMI, cholesterol, etc. in pediatric patients diagnosed with obesity.
Methods: PubMed was first searched using synonyms of the keywords “pediatric obesity,” “GLP-1 agonists,” “lifestyle modifications,” and “biomarkers …
The Gut Microbiome’S Effect On Metabolic Syndrome, Kayla Turner
The Gut Microbiome’S Effect On Metabolic Syndrome, Kayla Turner
The PA Department Journal of Medical Science
Introduction: Metabolic Syndrome (MetS) is a chronic condition characterized by insulin resistance and low-grade inflammation. The purpose of this review is to focus on pre-/pro/symbiotic supplementation as a means of improving MetS parameters in place of pharmacological intervention.
Methods: PubMed was searched with the terms “metabolic syndrome”, “obese”, “obesity”, “overweight”, “insulin resistance”, “insulin sensitivity”, “probiotic”, “symbiotic”, and “bifidobacter*”. Operators and filters narrowed the results down to 55 results, 4 of which were picked due to their relevance and quality.
Results: The 4 articles chosen were RCT and a systematic review that explored the Bifidobacterium genus in relationship to the MetS …
Pharmacological Management Of A Spinal Cord Injury: A Review, Victoria A. Sumner
Pharmacological Management Of A Spinal Cord Injury: A Review, Victoria A. Sumner
The PA Department Journal of Medical Science
Introduction
A spinal cord injury results from damage to the cord itself. People who experience such an injury often live with pain for the rest of their lives. This review aims to compare the effectiveness of gabapentin versus tramadol in managing post-spinal cord injury pain.
Methods
A search using the key terms “spinal cord injury,” “gabapentin,” and “tramadol” was conducted on PubMed. Five relevant results were identified after applying operators and filters to narrow down the articles. Of those five articles, four were reviewed in this analysis.
Results
All four articles directly compare gabapentin to a test substance. Three of …
Understanding The Efficacy Of Photodynamic Therapy In Comparison To Topical Therapies In Treating Actinic Keratosis In Those At Increased Sun Exposure Risk, Tatum R. Mcbride
Understanding The Efficacy Of Photodynamic Therapy In Comparison To Topical Therapies In Treating Actinic Keratosis In Those At Increased Sun Exposure Risk, Tatum R. Mcbride
The PA Department Journal of Medical Science
Introduction: Actinic keratoses are precancerous skin lesions that arise secondary to increased sun exposure. These lesions have a propensity to transform into non-melanoma skin cancers, mainly squamous cell carcinoma, if left untreated. There are a multitude of different treatment options for the prevention and clearance of these lesions. Among these options is photodynamic therapy (PDT). The purpose of this paper is to investigate the effectiveness of PDT when compared to other options for AK treatment.
Methods: A search was conducted using PubMed for studies to analyze the efficacy of PDT when compared to other treatment options. 3 articles were selected …
Psilocybin Treatment For Refractory Depression: A Clinical Review, Hailey A. Jensen
Psilocybin Treatment For Refractory Depression: A Clinical Review, Hailey A. Jensen
The PA Department Journal of Medical Science
Introduction:
Depression is a widespread mental illness that affects a large portion of the world population and many of those who suffer from depression are resistant to treatment currently available. The purpose of this review is to compare the efficacy of psilocybin to the current available methods for the treatment of refractory depression.
Methods:
PubMed was searched with the key search terms: resistant depression, psilocybin therapy, and adults. Operators and filters narrowed down the search to 43 results. Four articles were then chosen based on quality and specificity with this review.
Results:
The articles included in this review compare the …
Hyaluronic Acid For The Treatment Of Knee Osteoarthritis: A Clinical Review, Victoria G. Morrison Cerda
Hyaluronic Acid For The Treatment Of Knee Osteoarthritis: A Clinical Review, Victoria G. Morrison Cerda
The PA Department Journal of Medical Science
Introduction: Osteoarthritis of the knee (KOA) is a progressive degenerative disease of the knee joint characterized by knee pain and limited knee function which negatively impacts activities of daily living. Effective and safe IA treatments are needed to meet the needs of an ever-increasing population of those living with KOA. This clinical review aims to assess the effectiveness of IA hyaluronic acid compared to corticosteroids for pain management in KOA.
Methods: PubMed was searched using the key terms “hyaluronic acid injection”, “knee osteoarthritis”, “corticosteroid injection”, and “pain relief”. Modifiers and operators were applied, and results were narrowed to four relevant …
Beyond Steroids: A Head-To-Head Review Of Hyaluronic Acid And Prp In Knee Osteoarthritis, Phillip A. Sekander
Beyond Steroids: A Head-To-Head Review Of Hyaluronic Acid And Prp In Knee Osteoarthritis, Phillip A. Sekander
The PA Department Journal of Medical Science
Introduction: Osteoarthritis of the knee is one of the most common primary complaints in the US. Newer injectable therapies that target specific cartilage degeneration are being developed. The purpose of this review is to compare the efficacy of PRP and HA injections for the management of knee osteoarthritis.
Methods: PubMed was searched using the key terms “osteoarthritis of the knee,” “hyaluronic acid,” “platelet-rich plasma,” and “management of pain.” This search was refined using MeSH terms, Boolean operators, and applied filters (English, free full-text, publication date between 2020-2025). Four articles were selected for in-depth review of the efficacy of platelet-rich plasma …
Gluten-Free Diet For Patients With Hashimoto's Thyroiditis: A Clinical Review, Sallie Young
Gluten-Free Diet For Patients With Hashimoto's Thyroiditis: A Clinical Review, Sallie Young
The PA Department Journal of Medical Science
Introduction: Hashimoto’s thyroiditis (HT) is the most common cause of hypothyroidism worldwide. Although levothyroxine remains the standard treatment for hypothyroidism caused by HT, interest has grown in dietary interventions, particularly gluten-free diets (GFDs), as a means of reducing thyroid autoimmunity and improving clinical outcomes. The purpose of this clinical review is to analyze the effectiveness of GFD on improving thyroid autoantibodies in patients with HT.
Methods: PubMed was search with a specific search strategy using key terms “Hashimoto’s thyroiditis”, “autoimmune hypothyroidism”, “Hashimoto’s” and “diet”. Operators and filters narrowed results to sixteen. Four studies met the inclusion criteria, including …
“I Don’T Always See A Future For Me Here”: Oppressive Political Pressures On Lgbtq+ College Students’ Well-Being, Jodi Linley, Olivia M. Copeland, Kathleen J. Buell, Cindy Ann Kilgo, Megan Pendleton, Alex C. Lange, N F. Tennessen
“I Don’T Always See A Future For Me Here”: Oppressive Political Pressures On Lgbtq+ College Students’ Well-Being, Jodi Linley, Olivia M. Copeland, Kathleen J. Buell, Cindy Ann Kilgo, Megan Pendleton, Alex C. Lange, N F. Tennessen
Journal of Queer and Trans Studies in Education
In recent decades, colleges have broadly supported LGBTQ+ students. Now, institutions have shuttered LGBTQ+ initiatives in response to political pressures, with little consideration for the effects on students. This study answers the question, what current policy factors do LGBTQ+ college students describe as affecting their well-being, and in what ways? We analyzed 426 responses from a multi-institution study of LGBTQ+ students. By and large, students feel anxious and fearful as they navigate the current climate. Our analysis illustrated numerous factors, from the President and his administration to states and general emboldened violence, and the real and potential consequences of those …
Facts, Policy, And Discretion, F. Andrew Hessick, Carissa Byrne Hessick
Facts, Policy, And Discretion, F. Andrew Hessick, Carissa Byrne Hessick
Faculty Publications
Presidents, prosecutors, and judges often announce policies on how they will make discretionary decisions. These policies have met the criticism that discretion must be the product of an assessment of the particular facts of a case. Decisionmakers cannot base discretionary decisions on policy considerations, nor can they adopt policies stating how they intend to exercise their discretion. To do so, the argument goes, does not constitute an exercise of discretion, but rather an abdication of it.
This Article argues that this criticism misunderstands discretion. Discretionary decisions must rest on reasons, and reasons necessarily appeal to principles and policies that are …
Civil Death By A Thousand Cuts, Eisha Jain
Civil Death By A Thousand Cuts, Eisha Jain
Faculty Publications
Commentators have leveled trenchant critiques of collateral consequences of criminal conviction, analogizing them to a form of “civil death.” This Essay develops the related concept of “civil death by a thousand cuts” in two senses. First, penalties such as voting bans or deportation after a conviction are often just the tip of the iceberg. Second, a system of far-flung, intertwined civil and criminal penalties portends the death of a civil society capable of recognizing and mediating excessive penalties. Recognizing how these penalties operate—and how difficult they can be to address—is a critical step toward creating a more proportionate criminal legal …
A New 17 U.S.C. § 108a: Restoring The Intellectual Property Clause's Balance In Copyright Consideration Of Digital Disruption And The Prevalence Of Onerous Licensing Practices, Caroline L. Osborne
A New 17 U.S.C. § 108a: Restoring The Intellectual Property Clause's Balance In Copyright Consideration Of Digital Disruption And The Prevalence Of Onerous Licensing Practices, Caroline L. Osborne
Faculty Publications
Accessibility of knowledge and control over information is key to an informed public and democracy. The founding fathers recognized the benefits of an informed citizenry, enshrining this concept in the Intellectual Property Clause of the Constitution. Such a clause created a delicate balance between creator and consumer, incentivizing creation for the benefit of society. The beauty of the Clause is the concept of balance. Balance resting delicately on the fulcrum with the dual requirements of reward for creation and benefit to society. The evolution of the means and formats in which information is delivered to the consumer in the creation …
Government Religious Speech And The Establishment Clause, Mark Storslee, Michael Helfand
Government Religious Speech And The Establishment Clause, Mark Storslee, Michael Helfand
Faculty Publications
The government says religious things. From monuments and holiday displays to legislative prayers, religion saturates the government’s public voice. But how can that be permissible when the Establishment Clause, at least in theory, indicates the government should be religiously neutral?
So far, the Supreme Court’s attempts to address the puzzle have come up short. Early on, the Court suggested that seemingly all government speech must be secular, or that it refrain from “endorsing” religion. But the Court never consistently enforced those limits, struggling to reconcile them with America’s historical experience. And in recent years, the Court has rejected those approaches …
Forum Shopping, Statutes Of Limitations, And Borrowing Statutes, John F. Coyle
Forum Shopping, Statutes Of Limitations, And Borrowing Statutes, John F. Coyle
Faculty Publications
When a claim is stale in one state but timely in another, a rational plaintiff will always file a lawsuit in the latter jurisdiction. To discourage plaintiffs from shopping around for the longest statute of limitations, thirty-six states have enacted laws known as borrowing statutes. A borrowing statute directs the state’s courts to apply the shorter statute of limitations of another state—typically the one where the cause of action arose—to bar the plaintiff’s claim.
The conventional wisdom holds that borrowing statutes merely restrain plaintiffs from filing lawsuits in out-of-the-way jurisdictions with no connection to the lawsuit. This Article reveals that, …
Clinical Informatics Education To Advance Learning Health Systems: A Scoping Review, Alexandra Zingg, L Ida Tovar, Laura Witte, Kelsey L Koym, Kyler Godwin
Clinical Informatics Education To Advance Learning Health Systems: A Scoping Review, Alexandra Zingg, L Ida Tovar, Laura Witte, Kelsey L Koym, Kyler Godwin
Library Staff Publications
Introduction: Learning health systems leverage clinical data and knowledge to advance healthcare quality. Effective training in informatics concepts and tools is essential for medical trainees to become health system experts and contributors to positive organizational change. The objective of this study is to summarize characteristics of existing clinical informatics training programs and map these to recommended Learning Health System informatics competencies. We aim to answer the following research questions: (1) How are academic medical institutions implementing informatics education initiatives for medical trainees? (2) Are these initiatives implementing recommended informatics competencies? and (3) How effective are these initiatives according to established …
Spatial Evolution In Temporal Dynamics Of Hemodynamic Response Function In Human Superior Colliculi With Ultra-High-Resolution Mri At 9.4t, Nooshin J Fesharaki, Artemy Vinogradov, David Ress, Jung Hwan Kim
Spatial Evolution In Temporal Dynamics Of Hemodynamic Response Function In Human Superior Colliculi With Ultra-High-Resolution Mri At 9.4t, Nooshin J Fesharaki, Artemy Vinogradov, David Ress, Jung Hwan Kim
Faculty, Staff and Student Publications
The superior colliculus (SC) plays a crucial role in multisensory integration, visual information processing, saccadic target selection, visual selective attention, and decision making. In particular, the SC has a key role in oculomotor coordination, following a rostro-caudal organization. The rostral SC, which corresponds to foveal representation, is linked to fixation, microsaccades, smooth pursuit, and vergence adjustments. In contrast, the caudal SC, representing more peripheral visual field, is associated with the large gaze shifts (saccades). However, evidence regarding whether this functional gradient is preserved in the human SC remains limited. In this study, we employed a sequence-following visual-motor task to specifically …
Polyfluoroalkyl Substances And Altered Glucose Homeostasis In Adolescents Following Bariatric Surgery, Elizabeth Costello, Brittney O Baumert, Zhenjiang Li, Vishal Midya, Shudi Pan, Justin R Ryder, Thomas H Inge, Todd M Jenkins, Stephanie Sisley, Stavra A Xanthakos, Anita Courcoulas, Douglas I Walker, Nikos Stratakis, Damaskini Valvi, Scott M Bartell, Angela L Slitt, Rohit Kohli, Sarah Rock, Michele A La Merrill, Sandrah P Eckel, Max T Aung, Rob Mcconnell, David V Conti, Lida Chatzi
Polyfluoroalkyl Substances And Altered Glucose Homeostasis In Adolescents Following Bariatric Surgery, Elizabeth Costello, Brittney O Baumert, Zhenjiang Li, Vishal Midya, Shudi Pan, Justin R Ryder, Thomas H Inge, Todd M Jenkins, Stephanie Sisley, Stavra A Xanthakos, Anita Courcoulas, Douglas I Walker, Nikos Stratakis, Damaskini Valvi, Scott M Bartell, Angela L Slitt, Rohit Kohli, Sarah Rock, Michele A La Merrill, Sandrah P Eckel, Max T Aung, Rob Mcconnell, David V Conti, Lida Chatzi
Children’s Nutrition Research Center Staff Publications
Objectives: Bariatric surgery is an effective treatment for severe obesity and associated metabolic comorbidities. Exposure to polyfluoroalkyl substance (PFAS) before bariatric surgery may attenuate improvements in glucose metabolism and explain some of the heterogeneity in post-surgery outcomes.
Design: This is an observational cohort study.
Methods: Adolescents (n = 186) enrolled in the Teen-Longitudinal Assessment of Bariatric Surgery study were included. Eight-PFAS congeners were measured in plasma before surgery. Linear and logistic regressions were used to examine cross-sectional associations between log2-transformed PFAS (ng/mL) and fasting glucose, insulin, hemoglobin A1c (HbA1c), and homeostatic model assessment for insulin resistance (HOMA-IR). Linear mixed …
Alternative Polyadenylation Signatures Distinguish Maladaptive Right Ventricular Remodeling In Pulmonary Hypertension: Implications For Rna-Based Diagnostics And Therapeutics, Janani Subramaniam, Venkata Jonnakuti, Scott D Collum, Sandra Martineau, Kai-Lieh Huang, Sandra Breuils-Bonnet, Andrea L Frump, Bindu H Akkanti, Jayeshkumar A Patel, Manish K Patel, Ismael Salas De Armas, Isabella N Lefebvre, Rajko Radovancevic, Elvin Blanco, Eric J Wagner, Igor Gregoric, Sriram Nathan, Biswajit Kar, Steeve Provencher, Sebastien Bonnet, François Potus, Hari Krishna Yalamanchili, Harry Karmouty-Quintana
Alternative Polyadenylation Signatures Distinguish Maladaptive Right Ventricular Remodeling In Pulmonary Hypertension: Implications For Rna-Based Diagnostics And Therapeutics, Janani Subramaniam, Venkata Jonnakuti, Scott D Collum, Sandra Martineau, Kai-Lieh Huang, Sandra Breuils-Bonnet, Andrea L Frump, Bindu H Akkanti, Jayeshkumar A Patel, Manish K Patel, Ismael Salas De Armas, Isabella N Lefebvre, Rajko Radovancevic, Elvin Blanco, Eric J Wagner, Igor Gregoric, Sriram Nathan, Biswajit Kar, Steeve Provencher, Sebastien Bonnet, François Potus, Hari Krishna Yalamanchili, Harry Karmouty-Quintana
Faculty, Staff and Student Publications
Increased pulmonary vascular pressures due to vascular remodeling, elevated vascular resistance, and vasoconstriction characterize Pulmonary Arterial Hypertension (PAH). The narrowing of the pulmonary arteries and obstruction of blood flow increase the Right Ventricular (RV) afterload, forcing the RV to undergo structural and functional changes. While adaptive remodeling leads to RV compensation by maintaining function, maladaptive remodeling leads to RV decompensation, characterized by worsening function and eventual failure. At present, there is no effective treatment for these patients as therapies for left ventricular failure are ineffectual, and there are no therapies specifically targeting the RV. Therefore, there is a clear need …
Test-Retest Apparent Diffusion Coefficient Reproducibility In Head And Neck Cancer Using A 15-T Mr-Linac, Brigid A Mcdonald, Dina El-Habashy, Renjie He, Sam Mulder, Sarah Mirbahaeddin, Abdallah S R Mohamed, Sara Ahmed, Yao Ding, Jihong Wang, Stephen Y Lai, Alex Dresner, John Christodouleas, Clifton D Fuller
Test-Retest Apparent Diffusion Coefficient Reproducibility In Head And Neck Cancer Using A 15-T Mr-Linac, Brigid A Mcdonald, Dina El-Habashy, Renjie He, Sam Mulder, Sarah Mirbahaeddin, Abdallah S R Mohamed, Sara Ahmed, Yao Ding, Jihong Wang, Stephen Y Lai, Alex Dresner, John Christodouleas, Clifton D Fuller
Faculty, Staff and Student Publications
Purpose
To evaluate the reproducibility of apparent diffusion coefficient (ADC) measurements in head and neck squamous cell carcinoma (HNSCC) using a 1.5-T MR-linac (MRI-guided linear accelerator) system.
Materials and Methods
In this retrospective study, conducted between February 2021 and January 2024, patients with HNSCC lesions underwent echo-planar imaging diffusion-weighted MRI on a 1.5-T MR-linac system at two time points before the start of radiation therapy. Mean and median ADC values and volumes were measured for each lesion. Absolute and percent reproducibility coefficients (RCs) were calculated. Linear regression analyses and F tests were performed to determine whether the lesion volume or …
Teacher Perceptions Of Best Teaching Practices For Improved Student Outcomes In An Alternative School Setting, Chasity Clark
Teacher Perceptions Of Best Teaching Practices For Improved Student Outcomes In An Alternative School Setting, Chasity Clark
Doctor of Education Dissertations
This dissertation explores the experiences and professional perspectives of educators working in urban alternative school settings and examines how they foster positive outcomes for marginalized youth. Although alternative education is frequently characterized as a punitive “last resort,” this study highlights its potential as a setting for transformative resilience, student empowerment, and innovative teaching practices. Guided by social constructivism, transformative learning theory, and critical pedagogy, the study employed a qualitative design involving two rounds of semi-structured interviews and a focus group with 11 educators. Analysis of the data resulted in six integrated themes: psychological safety as a prerequisite for agency, self-efficacy …
Beyond The Paycheck: An Exploration Of The Role Of Management And Leadership Support In Employee Retention, Stacia Leach Lomax
Beyond The Paycheck: An Exploration Of The Role Of Management And Leadership Support In Employee Retention, Stacia Leach Lomax
Doctor of Education Dissertations
Employee retention remains a significant organizational challenge, particularly in the post-COVID-19 workplace where employees increasingly seek meaningful support, recognition, and workplace well-being in addition to compensation. Guided by Herzberg et al.’s (1959) Two-Factor Theory, the purpose of this qualitative study was to explore how employees perceive management support and how those perceptions influence decisions to remain with or resign from an organization. The study was conducted using a qualitative descriptive design involving 12 semi-structured interviews with individuals who had voluntarily resigned from organizations across multiple employment sectors. A follow-up focus group was conducted to confirm and validate emerging findings. Data …
A Multiple Case Study Exploring The Lived Experiences Of Special Education Teachers Of Students With Intellectual Disabilities, Patrece A. Scott
A Multiple Case Study Exploring The Lived Experiences Of Special Education Teachers Of Students With Intellectual Disabilities, Patrece A. Scott
Doctor of Education Dissertations
Special educators, particularly the teachers of students with intellectual disabilities, remained an understudied group in research. The purpose of this phenomenological qualitative study was to examine how special educators navigated their lived experiences collaborating with three key stakeholder groups: parents, general education teachers, and administrators, particularly working with students with intellectual disabilities. Specifically, this study examined how special educators experienced collaboration with those stakeholder groups through the framework of McClelland's (1961) Theory of Needs. The study involved two semi-structured interviews with each of the 12 participants, all of whom were special educators at the middle or high school level. These …
Employee Engagement And Retention Strategies For Merchandisers Within The First 90 Days Of Employment At Refresh Drinks - Mixed Methods, Valerie M. Williams
Employee Engagement And Retention Strategies For Merchandisers Within The First 90 Days Of Employment At Refresh Drinks - Mixed Methods, Valerie M. Williams
Doctor of Education Dissertations
This convergent mixed methods study examined employee engagement and retention strategies for frontline merchandisers during the first 90 days of employment at Refresh Drinks (pseudonym) in North Carolina and South Carolina. Guided by Herzberg’s (1959, as cited in Miner, 2005) Two-Factor Theory, the study investigated how onboarding, management engagement, professional development, career advancement, and recognition influenced early employee experiences and retention. Quantitative data were collected from 75 participants using Likert scale survey items, while qualitative data were gathered through open-ended responses to provide deeper insight into employee perceptions. Findings revealed that onboarding and management engagement were perceived as strong organizational …
Cerebellar Motor And Non-Motor Contributions To Dystonia Pathophysiology And Treatment, Linda H Kim, Cheryl Brandenburg, Roy V Sillitoe
Cerebellar Motor And Non-Motor Contributions To Dystonia Pathophysiology And Treatment, Linda H Kim, Cheryl Brandenburg, Roy V Sillitoe
Duncan NRI Faculty and Staff Publications
Dystonia is a complex neurological disorder characterized by sustained or intermittent abnormal movements and/or postures. However, dystonia's non-motor symptoms, particularly the sleep disturbances, are critical yet underexplored concerns that affect all ages. Here, we synthesize current knowledge on the motor and non-motor domains of dystonia, emphasizing the functional interconnections and plasticity within cerebellar motor, cognitive, and sleep-associated circuits to motivate more comprehensive and effective treatments that improve overall quality of life.
Organ Chips And Translational Research: Identifying And Examining New Ethical Issues, Melanie Jeske
Organ Chips And Translational Research: Identifying And Examining New Ethical Issues, Melanie Jeske
Center for Medical Ethics and Health Policy Staff Publications
Organ chips, also known as organ-on-a-chip devices, tissue chips, or microphysiological systems, have emerged over the last decade as a promising translational technology amidst growing concern about the translational crisis between laboratory research and patient bedside. Pointing to high rates of failure between nonhuman animal models and safety and efficacy in humans, organ chips and similar new approach methods have attracted substantial public and private investment. As human-cell-based alternatives to animal models, organ chips promise more predictive, efficient, and ethical platforms for pharmaceutical and toxicity testing. Engineered cultivation systems that enable cells to assemble into tissue-like structures (e.g. kidney, brain, …
Anything But Endo: Diagnostic Buck-Passing In Endometriosis Diagnosis, Rita Dexter, Megan Kitts, Heather Welty, Melanie Jeske
Anything But Endo: Diagnostic Buck-Passing In Endometriosis Diagnosis, Rita Dexter, Megan Kitts, Heather Welty, Melanie Jeske
Center for Medical Ethics and Health Policy Staff Publications
People living with endometriosis, a disease in which tissue similar to the lining of the uterus grows elsewhere in the body, often experience prolonged diagnostic journeys because of symptom variability, normalisation of period pain and other symptoms, and lack of awareness of the condition. In this article, we analyse the endometriosis diagnostic journey through the lens of epistemic injustice. Drawing on in-depth interviews with 52 people living with endometriosis in the United States, we introduce the concept of diagnostic buck-passing to characterise the phenomenon wherein individuals who seek treatment for their symptoms end up stuck in a cycle of seeing …
Differences Between Government, Consortium, And Private Database Stewards Impacting The Genomic Data Market: A Survey Of U.S. Academic Genetic Researchers., Amanda K Greene, J Denard Thomas, Kaitlyn Jaffe, Luyun Chen, Kerry A Ryan, Brian J Zikmund-Fisher, J Scott Roberts, Amy L Mcguire, Katherine Hendy, Kayte Spector-Bagdady
Differences Between Government, Consortium, And Private Database Stewards Impacting The Genomic Data Market: A Survey Of U.S. Academic Genetic Researchers., Amanda K Greene, J Denard Thomas, Kaitlyn Jaffe, Luyun Chen, Kerry A Ryan, Brian J Zikmund-Fisher, J Scott Roberts, Amy L Mcguire, Katherine Hendy, Kayte Spector-Bagdady
Center for Medical Ethics and Health Policy Staff Publications
Background: Despite major shifts in U.S. federal government data sharing requirements, their impact, and relation to researcher choice of database, are underexplored. This study surveyed genetic researchers regarding trends, priorities, perceptions of quality, impact on research outcomes, and genomic data sharing and use across government, consortium, and private databases.
Methods: As part of an exploratory sequential mixed methods project, we surveyed 294 U.S.-based genomic academic researchers.
Results: Genetic researchers generally have a choice between databases, which allows them to prioritize data quality. This might explain recent trends toward the use of government and consortium databases away from private ones. Respondents …
Can I Get A Witness? The Ethical Dimensions Of Family Presence In Patient Suffering, Jennifer Blumenthal-Barby, Trevor M Bibler, Holland Kaplan, Adam Omelianchuk, Joanna Smolenski
Can I Get A Witness? The Ethical Dimensions Of Family Presence In Patient Suffering, Jennifer Blumenthal-Barby, Trevor M Bibler, Holland Kaplan, Adam Omelianchuk, Joanna Smolenski
Center for Medical Ethics and Health Policy Staff Publications
For patients who are suffering, the bedside presence of a family member can provide comfort, and many people hold that there is moral value in being present with a conscious, suffering patient. Yet what is the moral significance of the absence of family members when a patient is minimally conscious or unconscious and not aware of their absence? Clinicians are often troubled when family members and surrogate decision-makers who are able to spend a significant amount of time at an unconscious, seriously ill patient's bedside do not do so. Clinicians feel frustrated that they must bear the burden of witnessing …
Toward Ethical Provenance Tracking: The Ga4gh Model Data Access Agreement (Daa), Alexander Bernier, Bartha Maria Knoppers, Jonathan Lawson, Robyn Mcdougall, Maili Raven-Adams, Vasiliki Rahimzadeh
Toward Ethical Provenance Tracking: The Ga4gh Model Data Access Agreement (Daa), Alexander Bernier, Bartha Maria Knoppers, Jonathan Lawson, Robyn Mcdougall, Maili Raven-Adams, Vasiliki Rahimzadeh
Center for Medical Ethics and Health Policy Staff Publications
Purpose: Standardizing contractual clauses that govern data access enables research institutions to responsibly steward genomic and related health data while enabling its efficient downstream reuse.
Methods: We describe a document analysis study using both qualitative and comparative law analytical approaches to identify the most common categories of clauses from 29 different data access agreements used by human biomedical research consortia globally. We furthermore characterized the legal positions and standard practices for each common element of the agreement and synthesized across them to develop model clauses. A total of 3 discussion sessions were organized virtually to refine the clauses among members …
Clinicians’ Views On A Patient Decision Aid For Deep Brain Stimulation In Parkinson’S Disease, Hillary S King, Jennifer Blumenthal-Barby, Benjamin H Levi, Sol De Jesus, Harini Sarva, Laura Y Cabrera
Clinicians’ Views On A Patient Decision Aid For Deep Brain Stimulation In Parkinson’S Disease, Hillary S King, Jennifer Blumenthal-Barby, Benjamin H Levi, Sol De Jesus, Harini Sarva, Laura Y Cabrera
Center for Medical Ethics and Health Policy Staff Publications
Introduction: For people with Parkinson's disease (PD), deciding whether to pursue deep brain stimulation (DBS) has become increasingly complex. Evidence suggests current approaches to collaborative decision-making may fall short of accepted standards. Thus, a decision support intervention, such as a patient decision aid (PtDA) may be warranted. PtDAs have been shown to improve patients' knowledge, expectations, and participation in decision-making for other, similar healthcare decisions. We therefore sought to assess neurologists' awareness of, and experience using, PtDAs, and to solicit their opinions on the ideal features of a PtDA for PD patients considering DBS.
Methods: Sixteen United States-based neurology clinicians …