The impact of population based screening for carriers of cystic fibrosis.

Abstract

The purpose of the study was to evaluate the short term

Population-based carrier screening for cystic fibrosis: a systematic review of 23 years of research

“…Uptake was higher in women as compared with that in men, 49,50 and the screening approach-whether couples were screened as a unit (couple screening) or individually (stepwise screening)-did not influence uptake. 51,52 Factors influencing decisions about cF carrier screening…”

“…42,50,53,64,73 Individual carrier status did not affect reproductive intentions or behaviors, with carriers not altering their reproductive plans after receiving a positive test result. [65][66][67]71,73,[76][77][78] Screening of partners of carriers to determine risk of having a child with CF had an uptake of 61-100%, 20,36,52,74,[78][79][80][81][82][83] with reasons for partners not being tested being as follows: anxiety about result; would be tested when planning to start a family; would not alter reproductive plans; and had no further reproductive plans.…”

“…74,81,86 Psychological factors associated with screening for cF carrier status Concerns have been raised over the potential psychological harm of population screening for CF carrier status. Although there was an increase in anxiety on receiving a positive test result, 42,50,67,74,79,83 this dissipated once partners were tested and found to be negative, 65,79,83 following genetic counseling, 71,78 or after a period of 3-6 months. 42,50,71 Anxiety appears to be transient among carriers, with little to no anxiety present at 6-12 months or more after testing.…”

“…Although there was an increase in anxiety on receiving a positive test result, 42,50,67,74,79,83 this dissipated once partners were tested and found to be negative, 65,79,83 following genetic counseling, 71,78 or after a period of 3-6 months. 42,50,71 Anxiety appears to be transient among carriers, with little to no anxiety present at 6-12 months or more after testing. 65,74,78 There was no significant difference in anxiety between carriers and noncarriers 37,39,73,78,84 and between those who were screened and those not screened.…”

Carrier screening in preconception consultation in primary care

“…In all of these studies, testing was offered free of charge to the research participants, and some also assessed knowledge and anxiety, typically finding that knowledge, while variable, was adequate though often decreased over time (Bekker et al 1993;Bekker et al 1994;Bernhardt et al 1996;Henneman et al 2002;Honnor et al 2000;Gordon et al 2003). Anxiety, while often higher in test-positive couples, also decreased over time (Bekker et al 1993;Bekker et al 1994). …”