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Parents’ Experiences 12 Years after Newborn Screening for Genetic Susceptibility to Type 1 Diabetes and Their Attitudes to Whole-Genome Sequencing in Newborns

By Nicola Kerruish

Genetics in Medicine

Based on 15 semi-structured interviews with parents of children who had been tested for genetic susceptibility to type 1 diabetes (T1D), this article begins to address the gap in the literature concerning psychosocial effects of “genomic NBS”. It also examines parental attitudes toward potential future expansions of NBS. Absence of adverse psychosocial effects and ease of disclosure to the child represent initial positive findings, but they require replication and further evaluation in relation to uptake of prevention strategies. Attitudes of parents to “genomic NBS” are variable, suggesting that parental choice will be an important component of future screening programs.

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