Families' Experiences with Newborn Screening: A Critical Source of Evidence.
Hastings Cent Rep
; 48 Suppl 2: S29-S31, 2018 Jul.
Article
em En
| MEDLINE
| ID: mdl-30133722
ABSTRACT
Debates about expanding newborn screening with whole genome sequencing are fueled by data about public perception, public opinion, and the positions taken by public advocates and advocacy groups. One form of evidence that merits attention as we consider possible uses of whole-genome sequencing during the newborn period is parents' (and children's) diverse experiences with existing expanded screening protocols. What do we know about this experience base? And what implications might these data have for decisions about how we use whole genome sequencing and how we assess its impact in the future? Although the broader literature on genetic susceptibility testing suggests that testing usually does not have adverse effects on children's psychosocial well-being, certain newborn screening results have been demonstrated to cause distress, alter behavior, and even to influence the formation of new parental and family identities.
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Contexto em Saúde:
1_ASSA2030
Problema de saúde:
1_geracao_evidencia_conhecimento
Assunto principal:
Família
/
Testes Genéticos
/
Triagem Neonatal
/
Sequenciamento Completo do Genoma
Tipo de estudo:
Diagnostic_studies
/
Screening_studies
Limite:
Humans
/
Newborn
Idioma:
En
Revista:
Hastings Cent Rep
Ano de publicação:
2018
Tipo de documento:
Article