http://www.ncbi.nlm.nih.gov/pubmed/23543065

Paediatr Child Health. 2012 Apr;17(4):190-2.

Paediatric research and the communication of not-so incidental findings.

Knoppers BM.

Source

Centre of Genomics and Policy, Faculty of Medicine (Department of Human Genetics), McGill University, Montréal, Québec.

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.