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. 2012 Apr;17(4):190-2.
doi: 10.1093/pch/17.4.190.

Paediatric research and the communication of not-so incidental findings

Bartha Maria Knoppers  1
Affiliations

Paediatric research and the communication of not-so incidental findings

Bartha Maria Knoppers. Paediatr Child Health. 2012 Apr.

Abstract
in English, French

Paediatric research may well be the first field in which the ethical implications of next-generation sequencing (NGS) will be appreciated. Allowing as it does for the revelation of much more than just the disease gene being researched, the advent of NGS will require careful consideration of the return of research results and incidental findings to parents. In contrast to the choices offered to adults with regard to the return of both research results and incidental findings, the same does not hold true for children. Parents must act in their 'medical' best interests. Current policy guidance on this issue in Canada is unclear.

La recherche en pédiatrie est peut-être le premier domaine dans lequel on ressentira les conséquences éthiques du séquençage de prochaine génération (SPG). Puisque le SPG peut révéler beaucoup plus que le gène de la maladie recherchée, il faudra évaluer attentivement la manière de transmettre les résultats de la recherche et les observations connexes aux parents. Les choix qui sont offerts aux adultes à l’égard de la manière de transmettre les résultats de la recherche et des observations connexes ne le sont pas aux enfants. Les parents doivent agir dans l’intérêt de leur enfant sur le plan médical. Les politiques d’orientation sur la question ne sont pas claires au Canada.

Keywords: Ethics; Incidental findings; Next-generation sequencing; Paediatrics; Research results.

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References

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