Developing public policy for genetic diagnostic services

制定基因诊断服务的公共政策

• 批准号: 6559324
• 负责人: Benjamin Simon Wilfond
• 金额: --
• 依托单位: NATIONAL HUMAN GENOME RESEARCH INSTITUTE
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/6559324
• 关键词: biotechnology; cystic fibrosis; diagnosis quality /standard; disease carrier state; genetic carriers; genetic disorder diagnosis; genetic screening; health care policy; health services research tag; human data; method development; newborn human (0-6 weeks); public health

This project is a conceptual analysis to describe the normative assumptions necessary to translate empirical health services data into public policy. An analysis of this process for the development of public policy for cystic fibrosis newborn screening in Wisconsin has been completed. This analysis included several key findings. First, any benefits found during the research phase can not be assumed if a routine program dramatically alters the screening approach. Second, these benefits must be considered within the context of other potentially forgone benefits to patents with CF. Third, the benefits must be considered within the context of other potentially forgone benefits to other children. Finally, these benefits must be considered in contrast to potential harms to false positive families.

这个项目是一个概念性的分析，以描述必要的规范性假设，将经验性的卫生服务数据转化为公共政策。已经完成了对威斯康星州囊性纤维化新生儿筛查公共政策发展过程的分析。这项分析包括几项主要的调查结果。首先，如果常规程序显著改变了筛选方法，则不能假定在研究阶段发现的任何益处。第二，这些利益必须在具有CF的专利的其他潜在放弃利益的背景下考虑。第三，必须在其他儿童可能放弃的其他利益的背景下考虑这些利益。最后，这些好处必须与假阳性家庭的潜在危害相对比。