Testing and Counseling for Cystic Fibrosis Mutations

This project will evaluate CF carrier screening during pregnancy as perceived by the patient, partner, and provider and assess the impact on health costs through analysis of cost-effectiveness. The research team will offer CF carrier testing to women of reproductive age to determine what proportion of women who are offered testing desire it, what proportion of tested women adequately comprehend the significance of the results, and what proportion of partners of the tested women decide to be tested themselves. Additionally, anxiety, lack of comprehension, request for prenatal diagnosis despite low risk, and costs of the program will be assessed. Other aims include developing and testing written and videotaped educational materials for CF carrier testing and counseling and evaluating the attitudes and experiences of prenatal care providers conducting CF carrier testing, including their success in obtaining informed consent/informed refusal for testing. (Funded by NINR; first 2 years co-funded by NCHGR. Member of CFSC)