Genetic Counseling and Cystic Fibrosis Carrier Screening: Results of a Survey.

摘要

The OTA Background Paper presents results from a 1991 OTA survey of 431 genetic counselors and nurse geneticists. It was conducted to better understand the environment in which the average genetic counselor or nurse in genetics works, to describe the infrastructure and tools available to these professionals, to assess the state of practice in the provision of CF carrier screening, and to evaluate their attitudes regarding CF carrier screening. The survey data collected by OTA reflect the tensions and concerns surrounding the widespread implementation of CF carrier screening. Those who currently oppose routine carrier screening for CF raise concerns about the sensitivity of the test, the numbers of individuals that would be potentially screened--and the subsequent effect on the clinical genetics infrastructure--and the possibilities of stigma, discrimination, and poor quality in services. Those who think CF carrier screening should be widely available believe the information provided by the test increases patient autonomy and lowers uncertainty regarding reproductive futures.