Ethical Implications of Newborn Screening, Life-Limiting Conditions, and Palliative Care

Sudia-Robinson, Tanya

doi:10.1097/nmc.0b013e318210214c

Cited by 3 publications

(2 citation statements)

References 43 publications

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“…7 They continue to be a concern regarding many tests that are on the newborn metabolic screening panel. 8 WGS with rapid return of results raises the stakes regarding all of these issues. The key questions raised by these focus groups are the following: What sort of parental consent is appropriate before allowing a child to undergo GS?…”

Section: Discussionmentioning

confidence: 99%

Neonatologists’ Attitudes About Diagnostic Whole-Genome Sequencing in the NICU

2019

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Mr Knapp and Drs Decker and Lantos wrote, reviewed, and revised the manuscript and approved the final manuscript as submitted.This trial has been registered at www. clinicaltrials. gov (identifier NCT02422511). NIHUsing focus group methodology, we studied the attitudes of neonatologists regarding diagnostic rapid genome sequencing for newborns who were critically ill in a NICU. One focus group took place within the first year after whole-genome sequencing testing became available, and another focus group took place 3 years later. Focus groups were audiotaped, transcribed, and analyzed by using standard techniques of grounded theory. Different analysts coded them for themes. The analysts then discussed differences and agreed on major themes. Twelve doctors participated in the first focus group, and 9 doctors participated in the second; 62% were attending physicians, and the rest were fellows. There were 14 women and 7 men. We did not collect any other demographic information on participants. Surprisingly, we found few differences between the earlier focus group and the later one. Comments were categorized as falling into 4 domains: (1) uncertainty about the interpretation of results, (2) issues about parental consent and limits on their right to know genomic information, (3) different opinions about whether and how genomic results could be clinically useful, and (4) potential harms of genomic testing. abstract by guest on July 10, 2020 www.aappublications.org/news Downloaded from POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

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Section: Discussionmentioning

confidence: 99%

Neonatologists’ Attitudes About Diagnostic Whole-Genome Sequencing in the NICU

2019

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“…Éste cuidado especial debe extenderse a la etapa de lactante menor 1 lo que exige del personal de salud un saber que se debe renovar y fortalecer permanentemente. Estudios como el actual, buscan diagnosticar cómo se realiza este tipo de prácticas en los niños colombianos expuestos a riesgos de esta índole y por razones socioeconómicas y culturales 2,3 .…”

Section: Introductionunclassified

Valoración de los recién nacidos, a los 3 días y a los 3 meses, atendidos en assbasalud ese, manizales, (colombia), 2011-2012./newborn screening at 3 day and 3 months treated in assbasalud ese, manizales, (colombia), 2011 – 2012

Castrillón

Parra²,

Gómez

et al. 2013

archmed

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Objetivo: evaluar los progresos del crecimiento y del desarrollo durante el primer trimestre de vida según lo estipulado en la resolución 0412/00 del ministerio de la protección social de la república de colombia, y la adherencia a la 1° y 2° consulta posnatal por parte de las madres. Materiales y métodos: estudio de corte transversal analítico, en una población de 1 229 recién nacidos, cuyo parto fue atendido en las clínicas de assbsalud e.s.e (manizales-colombia) sede san cayetano entre los años 2011 y 2012. se analizaron las historias clínicas para extraer de allí los variables necesarias para el estudio. Resultados: al primer control posnatal asistieron el 83,2% de los recién nacidos, con una edad promedio de 3,4 días, al 2° el 44,6%, con una edad promedio de 3,4 meses, el 76,7% de las madres dieron lactancia materna exclusiva a sus bebés, el 6,1% no tenían plan de inmunización completo, 10% con patologías congénitas, osteo-muscular en el 28,3%, 44,3% de patología adquirida, en el 53,5% respiratoria, sífilis congénita en el o,2%, no se encontraron casos de ictericia. básicamente asistió a controles la población urbana, la que había asistido a más controles prenatales, y cuando el bebé tenía alguna patología, congénita o adquirida. Conclusiones:la alta inasistencia, sobre todo en la 2° consulta posnacimiento, dificulta el seguimiento del progreso del crecimiento y desarrollo del bebé durante el primer trimestre de vida en esta población Objective: To determine the standards of growth and development of infants throughouttheir first appointments during their first trimester of life and to evaluate the characteristicsthat may influence, directly or indirectly, the proper development of the newborn’shealth. Materials and methods: Cross sectional study, including a population of1229 infants delivered between 2011 and 2012 in ASSBASALUD E.S.E. clinic in SanCayetano. The medical records where analyzed to obtain the necessary variables.Results: To the first appointment 83.2% of the newborns assisted, having an averageage of 3.4 days. To the second control 44.6% assisted having an average age of 3.4months. 76.7% of the mothers gave exclusively breast milk to the babies, 6.1% didn’thad any complete vaccination plan, 10% had congenital pathologies, 28,3% in theskeletal and muscular system, 44.3% acquired pathology, 53.3% respiratory systemand 0.2% congenital syphilis, there were no cases found of jaundice. Basically theurban population assisted the most to the appointments and when the baby has anyacquired or congenital pathology. Conclusions: The high absence rate, mostly in thesecond appointment after birth makes it difficult to follow the growth and developmentof the baby during the first trimester of life.

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Congenital Diaphragmatic Hernia: Interprofessional Care of the Neonate and Family Grounded in Swanson’s Theory of Caring

Newberry²

2016

Neonatal Network

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Congenital diaphragmatic hernia (CDH), a major congenital defect, occurs in 3.3–5 per 10,000 live births. It is associated with significant morbidity and mortality risks, with lifelong implications imposed on survivors. The pathophysiology, diagnostic tools, and treatment modalities for CDH must be understood to provide timely, holistic care to the infant and family. Swanson’s theory of caring can effectively guide the interprofessional perinatal/neonatal team in the prenatal and postnatal care of the infant and family.

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Ethical Implications of Newborn Screening, Life-Limiting Conditions, and Palliative Care

Cited by 3 publications

References 43 publications

Neonatologists’ Attitudes About Diagnostic Whole-Genome Sequencing in the NICU

Neonatologists’ Attitudes About Diagnostic Whole-Genome Sequencing in the NICU

Valoración de los recién nacidos, a los 3 días y a los 3 meses, atendidos en assbasalud ese, manizales, (colombia), 2011-2012./newborn screening at 3 day and 3 months treated in assbasalud ese, manizales, (colombia), 2011 – 2012

Congenital Diaphragmatic Hernia: Interprofessional Care of the Neonate and Family Grounded in Swanson’s Theory of Caring

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