Psychosocial impact on mothers receiving expanded newborn screening results
نویسندگان
چکیده
منابع مشابه
Informing parents about expanded newborn screening: influences on provider involvement.
OBJECTIVE Expanded newborn screening (NBS) identifies some disorders for which clinical benefit is uncertain, as well as "incidental" findings (eg, carrier status), thus enhancing the need to inform parents about NBS before sample collection. METHODS A self-complete survey was sent to a cross-sectional, stratified, random sample of 5 provider groups in Ontario (obstetricians, midwives, family...
متن کاملParental Views on Expanded Newborn Screening Using Whole-Genome Sequencing.
BACKGROUND AND OBJECTIVE The potential application of whole-genome sequencing (WGS) to state-mandated standard newborn screening (NBS) challenges the traditional public health approach to NBS and raises ethical, policy, and clinical practice issues. This article examines the perspectives and values of diverse healthy pregnant women and parents of children diagnosed with a primary immunodeficien...
متن کاملParental views on informed consent for expanded newborn screening.
BACKGROUND An increasing array of rare inherited conditions can be detected as part of the universal newborn screening programme. The introduction and evaluation of these service developments require consideration of the ethical issues involved and appropriate mechanisms for informing parents and gaining consent if required. Exploration of parental views is needed to inform the debate and speci...
متن کاملNewborn screening in China: phenylketonuria, congenital hypothyroidism and expanded screening.
This study was to investigate the current status of neonatal screening in China, to further clarify the incidences of hyperphenylalaninemia (HPA) and congenital hypothyroidism (CH). From 2000 to 2007, a total of 17,961,826 newborns had been screened for HPA and 1527 cases were detected, giving a HPA prevalence of 1:11,763. At the same time, 18,284,745 newborns had also been tested for CH, with ...
متن کاملPsychological Effects of False-Positive Results in Expanded Newborn Screening in China
OBJECTIVES As more families participate expanded newborn screening for metabolic disorders in China, the overall number of false positives increases. Our goal was to assess the potential impact on parental stress, perceptions of the child's health, and family relationships. METHODS Parents of 49 infants with false-positive screening results for metabolic disorders in the expanded newborn scre...
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ژورنال
عنوان ژورنال: European Journal of Human Genetics
سال: 2018
ISSN: 1018-4813,1476-5438
DOI: 10.1038/s41431-017-0069-z