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Article
Open AccessAttitudes to incorporating genomic risk assessments into population screening programs: the importance of purpose, context and deliberation
The use of an overall risk assessment based on genomic information is consistent with precision medicine. Despite the enthusiasm, there is a need for public engagement on the appropriate use of such emerging t...
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Article
Education and Parental Involvement in Decision-Making About Newborn Screening: Understanding Goals to Clarify Content
A challenge in designing effective education for parents about newborn screening (NBS) has been uncertainty about appropriate content. Arguing that the goals of education may be usefully tied to parental decis...
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Metabolic Clinic Atlas: Organization of Care for Children with Inherited Metabolic Disease in Canada
Introduction: Nearly all children in Canada with an inherited metabolic disease (IMD) are treated at one of the country’s Hereditary Metabolic Disease Treatment Centres. We sought to understand the...
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Article
Newborn screening education on the internet: a content analysis of North American newborn screening program websites
The Internet is a potentially important medium for communication about public health programs including newborn screening. This study explores whether the information available on official newborn screening pr...