The Perceptions of Uncertainties in Genome Sequencing (PUGS) Scale was developed to evaluate perceived uncertainties in genome sequencing. The scale comprises ten items to assess uncertainties within three domains: clinical, affective, and evaluative.
Project Narrative Racial/ethnic disparities in genomic testing and research participation threaten to exacerbate inequities in health outcomes, particularly in pediatrics.3-7 Given that current genomic privacy mechanisms (e.g., de-identification, broad consent) do not adequately address the concerns of historically disadvantaged populations related to genomic testing and research,1-3 there is an urgent need to understand the range of perspectives on genomic data privacy held by parents from diverse sociodemographic backgrounds.
The Personal Utility Scale (PrU) asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful) to 7 (extremely useful). This scale, the Parental Personal Utility Scale (Parent PrU), was specifically adapted for parents of children who have undergone genomic testing.
