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  1. Article

    Open Access

    Attitudes 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...

    Stuart G. Nicholls, Holly Etchegary, June C. Carroll, David Castle in BMC Medical Genomics (2016)

  2. No Access

    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...

    Beth K. Potter, Holly Etchegary, Stuart G. Nicholls in Journal of Genetic Counseling (2015)

  3. No Access

    Chapter

    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...

    Monica F. Lamoureux, Kylie Tingley, Jonathan B. Kronick in JIMD Reports, Volume 21 (2015)

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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...

    Makda H. Araia, Beth K. Potter in Journal of Community Genetics (2011)