Next-generation sequencing: Heeft de volgende generatie nog recht op een open toekomst?

Abstract

Next-generation sequencing (NGS) is expected to lead to a new era in paediatric research and diagnosis. Whole-exome and whole-genome sequencing are powerful diagnostic tools but also bring with them a deluge of genetic information, including genetic data that are solicited and unsolicited, validated and nonvalidated, highly and poorly predictive and more or less probabilistic. One of the most urgent ethical challenges is therefore whether to disclose such genetic risk information to parents of children undergoing NGS. This question is particularly relevant for conditions that do not have immediate consequences for the health of the child, since up till now a very restrictive disclosure policy was used for these conditions. © 2013 Bohn, Stafleu van Loghum.