Parental views on informed consent for expanded newborn screening

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Parental 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...

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Parental 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...

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Parental consent for newborn screening in southern Taiwan.

OBJECTS With the advent of genetic technologies, many genetic/metabolic disorders can be detected asymptomatically but might be untreatable, and the benefits and risks of screening for them are not fully known. The purpose of this study is to explore current practice with regard to the parental consent process in newborn screening (NBS). DESIGN Staff in 23 obstetric clinics/hospitals that con...

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CLINICAL ETHICS Parental consent for newborn screening in southern Taiwan

Objects: With the advent of genetic technologies, many genetic/metabolic disorders can be detected asymptomatically but might be untreatable, and the benefits and risks of screening for them are not fully known. The purpose of this study is to explore current practice with regard to the parental consent process in newborn screening (NBS). Design: Staff in 23 obstetric clinics/hospitals that con...

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Informed consent: views from Karachi.

Little is known about the public's perceptions about the process of obtaining informed consent for participation in medical research. A study was made of the views of patients, their attendants, parents, schoolteachers and office workers living in Karachi, Pakistan. Participants felt that informed consent was an important step in recruiting research participants but many felt that it was a trus...

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ژورنال

عنوان ژورنال: Health Expectations

سال: 2011

ISSN: 1369-6513

DOI: 10.1111/j.1369-7625.2011.00710.x