Potential psychosocial risks of sequencing newborns

LA Frankel, S Pereira, AL McGuire - Pediatrics, 2016 - publications.aap.org
Various stakeholders have issued recommendations regarding the use of genomics in
pediatrics. These guidelines are driven in part by concerns about psychosocial risks of …

Psychosocial effect of newborn genomic sequencing on families in the BabySeq Project: a randomized clinical trial

S Pereira, HS Smith, LA Frankel… - JAMA …, 2021 - jamanetwork.com
Importance Newborn genomic sequencing (nGS) may provide health benefits throughout
the life span, but there are concerns that it could also have an unfavorable (ie, negative) …

Perceived benefits, risks, and utility of newborn genomic sequencing in the BabySeq Project

S Pereira, JO Robinson, AM Gutierrez… - …, 2019 - publications.aap.org
BACKGROUND AND OBJECTIVES: There is interest in applying genomic sequencing (GS)
to newborns' clinical care. Here we explore parents' and clinicians' attitudes toward and …

[HTML][HTML] Parental interest in genomic sequencing of newborns: enrollment experience from the BabySeq Project

CA Genetti, TS Schwartz, JO Robinson, GE VanNoy… - Genetics in …, 2019 - Elsevier
Purpose Newborn genomic sequencing (nGS) has great potential to improve pediatric care.
Parental interest and concerns about genomics are relatively unexplored. Understanding …

Ethical issues in newborn sequencing research: the case study of BabySeq

LF Ross, EW Clayton - Pediatrics, 2019 - publications.aap.org
The BabySeq Project is a study funded by the National Institutes of Health and aimed at
exploring the medical, behavioral, and economic impacts of integrating genomic sequencing …

Returning a genomic result for an adult-onset condition to the parents of a newborn: insights from the BabySeq project

IA Holm, A McGuire, S Pereira, H Rehm, RC Green… - …, 2019 - publications.aap.org
The return of information from genomic sequencing in children, especially in early life, brings
up complex issues around parental autonomy, the child's future autonomy, the best interest …

[HTML][HTML] Parents of newborns in the NICU enrolled in genome sequencing research: hopeful, but not naïve

C Berrios, C Koertje, J Noel-MacDonnell, S Soden… - Genetics in …, 2020 - Elsevier
Purpose In 2014, our institution launched a randomized controlled trial (RCT) comparing
rapid genome sequencing (GS) to standard clinical evaluations of infants with suspected …

From genetics to genomics: ethics, policy, and parental decision-making

B Wilfond, LF Ross - Journal of pediatric psychology, 2009 - academic.oup.com
Objective Ethical evaluation of genetic testing in children is traditionally based on balancing
clinical benefits and risks. However, this focus can be inconsistent with the general practice …

[HTML][HTML] Parental attitudes toward standard newborn screening and newborn genomic sequencing: findings from the BabySeq study

B Armstrong, KD Christensen, CA Genetti… - Frontiers in …, 2022 - frontiersin.org
Introduction: With increasing utility and decreasing cost of genomic sequencing,
augmentation of standard newborn screening (NBS) programs with newborn genomic …

Genetic counseling considerations with rapid genome‐wide sequencing in a neonatal intensive care unit

EE Smith, C du Souich, N Dragojlovic… - Journal of Genetic …, 2019 - Wiley Online Library
As genome‐wide sequencing (GWS; exome sequencing [ES] and whole genome
sequencing [WGS]) is implemented more frequently in the neonatal intensive care unit …