Quality of Communication after Newborn Genetic Screening

新生儿基因筛查后的沟通质量

• 批准号: 6580811
• 负责人: Michael Henry Farrell
• 金额: $ 11.58万
• 依托单位: YALE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2003
• 资助国家: 美国
• 起止时间: 2003-07-01 至 2004-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6580811
• 关键词: attitude; child health care personnel; clinical research; communication; comprehension; cystic fibrosis; ethics; family genetics; focus groups; genetic disorder diagnosis; genetic screening; genetic susceptibility; human subject; newborn human (0-6 weeks); physicians; sickle cell anemia; statistics /biometry

DESCRIPTION (provided by applicant): Background: Newborn screening tests identify congenital diseases such as Cystic Fibrosis (CF) and Sickle Cell Hemoglobinopathy (SCH) early, but ethical concerns about comprehension and psychosocial complications ("outcomes") after heterozygous results may delay implementation of new test technologies such as from the Human Genome Project. Physicians' limited genetic knowledge and communication skills may lead to disparities in communication outcomes, especially in families with socioeconomic barriers or limited access to care. Ethics research projects should study communication services during the design of systematic programs to assess and improve communication "quality" and "outcomes" on a population scale. Specific Aims: (1) To identify attitudes and expectations for communication services among parents after positive newborn screening for CF or SCH. (2) To evaluate communication quality/competence of pediatricians before and after a randomized trial of an audit-and-feedback-style communication quality assurance intervention. (3) To identify incidence and risk factors for adverse communication outcomes after screening for CF/SCH, and determine whether feedback/support to physicians will improve outcomes. Setting/Participants: Parents of infants in New York and Wisconsin with positive screens for CF/SCH. Research Plan: The project will include (1) a targeted focus group study of parents' attitudes about communication services after newborn screening, (2) a telephone study to assess (audit) communication quality/competence and give feedback to physicians, and (3) a survey of parents of CF- and SCH-heterozygous infants to determine risk factors for poor comprehension and psychosocial outcomes. Career Development Plan: The principal investigator's goal is to become an independent investigator, focusing on ways to assess and improve the quality and outcomes of communication after newborn genetic screening. He will work closely with a team of mentors, advisors, and collaborators, and pursue a master's degree in Communication Sciences and a Certificate in Bioethics. Significance: It is hypothesized that communication quality/competence and outcomes vary greatly after newborn screening, but can be improved by audit and feedback. Progress in this area will generalize to other areas of communication and help streamline the implementation of new genetic testing technology.

背景：新生儿筛查测试早期识别先天性疾病，如囊性纤维化（CF）和镰状细胞血红蛋白病（SCH），但杂合结果后对理解和社会心理并发症（“结果”）的伦理担忧可能会延迟新测试技术的实施，如人类基因组计划。医生有限的遗传知识和沟通技巧可能导致沟通结果的差异，特别是在有社会经济障碍或获得护理机会有限的家庭中。伦理研究项目应在设计系统方案的过程中研究传播服务，以在人口规模上评估和改善传播“质量”和“结果”。