Explanipedia

Medical vs Nonmedical Immunization Exemptions for Child Care and School Attendance: Policy Statement Open

Jesse M. Hackell, Kyle B. Brothers, Sara Bode, Lisa M. Costello, Lisa M. Kafer , et al. · 2025

Routine childhood immunizations against infectious diseases are an integral part of our public health infrastructure. They provide direct protection to the immunized individual and indirect protection to children and adults unable to be im…

Motivations for participation in a spinal cord epidural stimulation study: Perspectives of individuals with spinal cord injury and their caregivers Open

Beatrice Ugiliweneza, Elsa Alvarez‐Madrid, April N. Herrity, Carla A. Rich, Kyle B. Brothers , et al. · 2025

STUDY DESIGN: Qualitative, semi structured interviews. OBJECTIVES: Spinal cord epidural stimulation (scES) has shown promise for improving autonomic and motor function in individuals with spinal cord injury (SCI). Participation on translat…

Early Intervention services in the era of genomic medicine: setting a research agenda Open

Katherine E. MacDuffie, Betty Cohn, Paul S. Appelbaum, Kyle B. Brothers, Dan Doherty , et al. · 2024

Measuring perceived utility of genomic sequencing: Development and validation of the GENEtic Utility (GENE-U) scale for pediatric diagnostic testing Open

Hadley Stevens Smith, Caryn Kseniya Rubanovich, Jill O. Robinson, Ariel Levchenko, Sarah A Classen , et al. · 2024

Expanding Applications of Clinical Genetic Testing — Ethical Challenges Open

Stephanie M. Fullerton, Kyle B. Brothers · 2024

The widening scope and scale of genetic tests are posing new challenges, and the need to address these challenges is becoming immediately relevant for all clinicians, not just genetics experts.

Ethical and Legal Issues Surrounding Genetic Testing in the NICU Open

Katharine Press Callahan, Ellen Wright Clayton, Amy A. Lemke, Bimal P. Chaudhari, Tara Wenger , et al. · 2024

Clinicians practicing in a modern NICU are noticing an increase in the proportion of patients who undergo genetic testing as well as changes in the types of genetic testing patients receive. These trends are not surprising given the increa…

Frequency and reasons that parents decline genetic testing for critically ill neonates Open

Katharine Press Callahan, Rebecca Mueller, Karen Crew, Kyle B. Brothers, David Munson , et al. · 2024

Parents who decline genetic testing for ill neonates provide an alternate appraisal of benefits and harms which should be incorporated into informing future parents considering these tests.

Moving to the Middle Ground: Redefining Genomic Utility to Expand Understanding of Familial Benefit Open

Kyle B. Brothers, Gregory M. Cooper, Katelyn C. McNamara, Amy A. Lemke, Josie Timmons , et al. · 2024

Translational research has tended to ignore the question of whether receiving a genomic diagnosis provides utility in community care contexts outside of doctors' offices and hospitals. However, empirical research with parents has highlight…

The Parent PrU: A measure to assess personal utility of pediatric genomic results Open

Erin Turbitt, Jennefer N. Kohler, Kyle B. Brothers, Simon Outram, Christine Rini , et al. · 2023

Genomic Sequencing in Pediatric Oncology: Perspectives of Parents and Adolescents on Ethical Issues Open

Esther Knapp, Jennifer Hall, Alyssa Middleton, Carla A. Rich, Kyle B. Brothers · 2023

Background As both tumor and germline sequencing become more common practice in children with cancer, it will be necessary to anticipate and address potential ethical issues. This study aimed to elicit the perspectives of adolescents with …

Table of Contents Open

Joshua L. Deignan, Anthony R. Gregg, Wayne W. Grody, Michael Guo, Hutton M. Kearney , et al. · 2023

ACMG SF v3.2 list for reporting of secondary findings in clinical exome and genome sequencing: A policy statement of the American College of Medical Genetics and Genomics (ACMG) Open

David T. Miller, Kristy Lee, Noura S. Abul‐Husn, Laura M. Amendola, Kyle B. Brothers , et al. · 2023

Parents’ Perspectives on the Utility of Genomic Sequencing in the Neonatal Intensive Care Unit Open

Amy A. Lemke, Michelle L. Thompson, Emily C. Gimpel, Katelyn C. McNamara, Carla A. Rich , et al. · 2023

Background: It is critical to understand the wide-ranging clinical and non-clinical effects of genome sequencing (GS) for parents in the NICU context. We assessed parents’ experiences with GS as a first-line diagnostic tool for infants wit…

Table of Contents Open

Marwan K. Tayeh, Margaret Chen, Stephanie M. Fullerton, Patrick Gonzales, Samuel J. Huang , et al. · 2023

Parental Uncertainty About a Child’s Health Scale (PUCHS): Development and Validation of a Novel Measure Open

Kendall L. Umstead, Samuel W. Woolford, Ellen F. Macnamara, Tatiane Yanes, Kyle B. Brothers , et al. · 2023

Importance Understanding perceptions of uncertainty among parents of children with chronic conditions—and health care providers’ opportunities to help parents effectively cope—is limited by existing measures. Objective To develop a novel, …

P208: SeqFirst: Impact of a precise genetic diagnosis on end-of-life decision making in the NICU* Open

Alexandra Keefe, Tara Wenger, Joon‐Ho Yu, Megan Sikes, Luke Kruidenier , et al. · 2023

O58: Measuring perceived utility of genomic sequencing in children and adults: Instrument development and validation* Open

Hadley Stevens Smith, Jill Robinson, Caryn Rubanovich, Ariel Levchenko, Janet Malek , et al. · 2023

Words matter: The language of difference in human genetics Open

Mildred K. Cho, Maria Laura Duque Lasio, Ina Amarillo, Kevin Mintz, Robin L. Bennett , et al. · 2022

Return of non-ACMG recommended incidental genetic findings to pediatric patients: considerations and opportunities from experiences in genomic sequencing Open

Kevin M. Bowling, Michelle L. Thompson, Melissa Kelly, Sarah Scollon, Anne Slavotinek , et al. · 2022

Background The uptake of exome/genome sequencing has introduced unexpected testing results (incidental findings) that have become a major challenge for both testing laboratories and providers. While the American College of Medical Genetics…

Data sharing and community-engaged research Open

Maya Sabatello, Daphne Oluwaseun Martschenko, Mildred K. Cho, Kyle B. Brothers · 2022

Data sharing must be accompanied by responsibility sharing

Addressing underrepresentation in genomics research through community engagement Open

Amy A. Lemke, Edward D. Esplin, Aaron J. Goldenberg, Claudia Gonzaga‐Jauregui, Neil A. Hanchard , et al. · 2022

Newborn screening for neurodevelopmental diseases: Are we there yet? Open

Wendy K. Chung, Jonathan S. Berg, Jeffrey R. Botkin, Steven E. Brenner, Jeffrey P. Brosco , et al. · 2022

In the US, newborn screening (NBS) is a unique health program that supports health equity and screens virtually every baby after birth, and has brought timely treatments to babies since the 1960's. With the decreasing cost of sequencing an…

Spinal Cord Injury at Birth, Expected Medical and Health Complexity in Chronic Injury Guided Anew by Activity-Based Restorative Therapy: Case Report Open

Laura Leon Machado, Kathryn Noonan, Scott Bickel, Goutam Singh, Kyle B. Brothers , et al. · 2022

As infancy is characterized by rapid physical growth and critical periods of development, disruptions due to illness or disease reveal vulnerability associated with this period. Spinal cord injury (SCI) has devastating consequences at any …

Case Report: Capitalizing on Development and Activity-Dependent Plasticity, an Interaction With Pediatric-Onset Spinal Cord Injury Open

MacKenzie Goode-Roberts, Kathryn Noonan, Danielle Stout, Margaret L. Calvery, Kyle B. Brothers , et al. · 2022

Background Spinal cord injury (SCI) in infancy halts typical development secondary to paralysis/paresis and the limited ability to engage with the environment. Traditional therapies further restrict a child via bracing, equipment, and medi…

eP425: Parental impact of genome sequencing during the neonatal period Open

Kyle B. Brothers, Carla A. Rich, Emily C. Gimpel, Kelly M. East, J. Nicholas Cochran , et al. · 2022

Additional file 1 of Return of non-ACMG recommended incidental genetic findings to pediatric patients: considerations and opportunities from experiences in genomic sequencing Open

Kevin M. Bowling, Michelle L. Thompson, Melissa Kelly, Sarah Scollon, Anne Slavotinek , et al. · 2022

Additional file 1: Table S1. Incidental genetic findings identified across four study sites conducting genomic testing for pediatric patients (expanded version of Table 1).

Genome sequencing as a first-line diagnostic test for hospitalized infants Open

Kevin M. Bowling, Michelle L. Thompson, Candice R. Finnila, Susan M. Hiatt, Donald R. Latner , et al. · 2021

“If It’s Ethical During a Pandemic…”: Lessons from COVID-19 for Post-Pandemic Biobanking Open

Kyle B. Brothers, Aaron J. Goldenberg, R. Jean Cadigan · 2021

This article refers to:Helpful Lessons and Cautionary Tales: How Should COVID-19 Drug Development and Access Inform Approaches to Non-Pandemic Diseases?

Conceptualization of utility in translational clinical genomics research Open

Hadley Stevens Smith, Kyle B. Brothers, Sara J. Knight, Sara Ackerman, Christine Rini , et al. · 2021

Perceived Utility of Genomic Sequencing: Qualitative Analysis and Synthesis of a Conceptual Model to Inform Patient-Centered Instrument Development Open

Hadley Stevens Smith, Stephanie R. Morain, Jill O. Robinson, Isabel Canfield, Janet Malek , et al. · 2021

Kyle B. Brothers YOU? Author Swipe