Parent Education on DNA Testing in the Newborn Screen

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DESCRIPTION: (provided by applicant): Knowledge of disease causing DNA sequences generated by the Human Genome Project will allow for DNA based tests to be incorporated into Newborn Screening programs for the detection of hereditary disorders that would benefit from early treatment. We hypothesize that complex concepts regarding genetics and DNA based testing applicable to Newborn screening requires focused and thoughtfully developed education of parents of newborns and propose that this information can be more effectively presented--with better immediate comprehension and better long-term retention--when provided by video than when offered by written materials alone. We aim to develop video based educational materials to inform new parents about implications of DNA testing for disorders evaluated in the newborn screen, using Cystic Fibrosis (CF) Newborn Screening as a model. We will optimize the impact of the video content based on focus group and post-video evaluation feedback. We will compare the efficacy of informing parents by standard written educational materials to providing an in-hospital, postpartum video presentation disseminated by an interactive hospital television network which allows on-line pre- and post-education comprehension assessments. Longest-term retention of information will be evaluated. The effectiveness of education in preparing parents for the informed dissent process designed for obtaining permission to perform pilot newborn screening tests will also be assessed in this population. On demand interactive in-hospital television education will provide a cost effective means for educating parents about genetics issues, implications of DNA based testing, and assessing their comprehension of the complex concepts.