Stop, look, and listen: revisiting the involvement of children and adolescents in genomic research

Abstract

The intersection of the genomic era and information age has created novel ethical, legal, and social issues that may be beyond the reach of existing guidelines for children and adolescents in research. By taking the opportunity to stop, to look, and to listen, nurses are in an ideal situation to help children, adolescents, and families understand these emerging and important issues. This chapter thus reviews and highlights the issues and challenges that arise when children and adolescents are involved in genomic research. First, we stop and review existing guidelines for the protection of individual children and adolescents in research and existing gaps and inconsistencies in their implementation. Then we take a closer look at the unique features of genetic and genomic research that create particular ethical challenges for completing the informed consent process when the research participant is a child or adolescent. Finally, we challenge nurses to listen more intently to what children and their families need to know before they are included in genetic and genomic research. We emphasize the changing context of children's lives today and the emergence of their decision-making skills.