Attitudes to carrier screening for cystic fibrosis: a survey of health care professionals, relatives of sufferers and other members of the public

Abstract

The gene which is mutated in cystic fibrosis has now been identified, thus permitting the detection of carriers in the general population. This paper reports pilot surveys in the North West Thames region of the health service to assess knowledge of people about cystic fibrosis and their attitudes towards screening. Three groups were surveyed: a group of relatives of those with cystic fibrosis (n = 268), a sample of the community (school pupils and family planning clinic attenders, n = 363), and a group of health care professionals (general practitioners and family planning clinic staff, n = 227). The relatives of cystic fibrosis sufferers were unanimously in favour of the introduction of cystic fibrosis screening, and the results indicate that there is likely to be support from the relevant health professionals: approximately 75% of respondents in the group of health care professionals believe the introduction of screening would be worthwhile. Data from the community sample suggest that, although knowledge of cystic fibrosis within the general community is low (less than 50% of respondents realized that cystic fibrosis affects the lungs and that no cure is available), there is likely to be considerable demand for carrier testing from the general public. Approximately 75% of the community sample indicated that they would like to be tested. There was no clear consensus, either from the professionals or the public, as to the best time to offer screening.