Raising Genomic Citizens: Adolescents and the Return of Secondary Genomic Findings

J Law Med Ethics. 2016 Jun;44(2):292-308. doi: 10.1177/1073110516654123.

Abstract

Whole genome and exome sequencing (WGS/WES) techniques raise hope for a new scale of diagnosis, prevention, and prediction of genetic conditions, and improved care for children. For these hopes to materialize, extensive genomic research with children will be needed. However, the use of WGS/WES in pediatric research settings raises considerable challenges for families, researchers, and policy development. In particular, the possibility that these techniques will generate genetic findings unrelated to the primary goal of sequencing has stirred intense debate about whether, which, how, and when these secondary or incidental findings (SFs) should be returned to parents and minors. The debate is even more pronounced when the subjects are adolescents, for whom decisions about return of SFs may have particular implications. In this paper, we consider the rise of "genomic citizenship" and the main challenges that arise for these stakeholders: adolescents' involvement in decisions relating to return of genomic SFs, the types of SFs that should be offered, privacy protections, and communication between researchers and adolescents about SFs. We argue that adolescents' involvement in genomic SF-related decisions acknowledges their status as valuable stakeholders without detracting from broader familial interests, and promotes more informed genomic citizens.

MeSH terms

  • Adolescent
  • Decision Making*
  • Genetic Testing / ethics*
  • Genome, Human
  • Genomics*
  • Humans
  • Incidental Findings*
  • Privacy
  • Research Personnel