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Pediatric research ‘personalized’? International perspectives on the return of results

    Bartha Maria Knoppers

    * Author for correspondence

    Centre of Genomics & Policy, McGill University/Genome Quebec Innovation Centre, Montréal (Québec), Canada.

    ,
    Amélie Rioux

    Centre of Genomics & Policy, McGill University/Genome Quebec Innovation Centre, Montréal (Québec), Canada

    &
    Ma’n H Zawati

    Centre of Genomics & Policy, McGill University/Genome Quebec Innovation Centre, Montréal (Québec), Canada

    Published Online:https://doi.org/10.2217/pme.12.110

    Decision-making dynamics in pediatric research have their foundation in the principle of the ‘best interests of the child’. The introduction of new sequencing technologies and the concomitant debate surrounding the return of research results and incidental findings are, however, challenging the interpretation of this principle. A comparative analysis of international and national approaches to the issue (USA, Canada, France, Spain and the UK) reveals not only the emergence of context-specific pediatric policy in this regard, but one that is ‘personalized’ to the child – that is, what is clinically significant and actionable during childhood.

    Papers of special note have been highlighted as: ▪ of interest

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