Ethical and Policy Issues in Cystic Fibrosis Screening

This project will focus on individuals and families receiving care from a health maintenance organization. The assessment of the ethical and policy issues in CF screening seeks to determine the level of interest in learning more about CF, and factors that distinguish those who are interested in participating in a CF education program from those who are not. For those who decide to participate, the focus consists of three elements: education of the study population; determination of the characteristics that distinguish those who decide to have the CF carrier test from those who decide not to be screened; and comparison of the responses of individuals after they have been identified as CF carriers or probable non-carriers, with emphasis on the extent to which these responses are influenced by marital status, and/or carrier status of the partner. All participants who test positive for CF carrier status and a sample of those who test negative will be followed for one year. (Member of CFSC)