Parent Education on DNA Testing in the Newborn Screen

描述：（由申请人提供）：致病DNA知识 人类基因组计划产生的序列将允许基于DNA的测试 纳入新生儿筛查计划，以检测 早期治疗对遗传性疾病有益。我们假设 关于遗传学和DNA测试的复杂概念适用于 新生儿筛查需要有针对性和深思熟虑的教育， 新生儿的父母，并建议这些信息可以更有效地 更好的即时理解和更好的长期 保留-当提供视频时，比单独提供书面材料时。 我们的目标是开发基于视频的教育材料，告知新父母 DNA检测对新生儿筛查中评估的疾病的影响， 使用囊性纤维化（CF）新生儿筛查作为模型。将优化 基于焦点小组和视频后评估的视频内容影响 反馈我们将比较通过标准书面通知父母的效果 教育材料，提供一个在医院，产后视频 通过互动医院电视网络传播的演示文稿， 允许在线的教育前和教育后的理解评估。最长远 将对信息的保留进行评估。教育的有效性 为父母准备知情的异议程序， 进行试点新生儿筛查测试的许可也将在 这个人口。按需交互式院内电视教育将 提供一种成本效益高的方式来教育父母关于遗传学问题， 基于DNA的测试的影响，并评估他们对 复杂的概念

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.