Factors perceived to influence parental decision-making regarding presymptomatic testing of children at risk for treatable adult-onset genetic disorders.

ABSTRACT

The purpose of this study was to identify those critical factors that genetic nurse experts perceived could influence parental decision-making to seek or to reject presymptomatic testing of their children at risk for treatable adult-onset genetic disorders (neurofibromatosis 2, familial adenomatous polyposis, and von Hippel Lindeau disorder). Perceptions of ISONG genetic nurse specialists were surveyed through a modified Delphi technique and four major themes emerged personal experience with severity of genetic disorder, receiving accurate information from credible sources, availability of quality treatment, and risk perception. Currently, there is a paucity of extant research that identifies critical factors influencing parental decision-making about this relatively new testing alternative for children. Thus, these experts are an important source of valuable information needed to identify such factors. Findings may be useful to design a qualitative study with parents to investigate this issue.