Rethinking risk: genetic discrimination and children’s right to participate in research

Children’s participation in genomic research presents complex ethical challenges that require protective measures balanced with children’s fundamental rights. One such challenge involves genetic discrimination (GD) and how its risk representation in consent documents may affect children’s research participation. This paper is the first in a series that considers how GD risk communication in pediatric research could be calibrated to support children’s rights. In particular, the series investigates whether overrepresentation of GD risk in consent materials can inadvertently affect children’s research participation and how human rights frameworks can provide the balance needed to protect children’s rights to nondiscrimination, science, and health. Viewed through a human rights lens, we consider how rights violations interconnect; exclusion from research may compromise not only individual participants but also future pediatric populations. By recognizing protection and participation as mutually reinforcing elements of children’s rights, this discussion explores how informed consent processes can support participant autonomy and offer meaningful opportunities for informed decision-making about genomic research involvement.