BARRIERS TO CARRIER TESTING FOR ADULT CYSTIC-FIBROSIS SIBS - THE IMPORTANCE OF NOT KNOWING

Early experience in centers offering population screening for cystic f ibrosis (CF) has shown that few of the public are taking advantage of the offer [Miller, 1993: New Scientist 139:6], There is similar low ut ilization among adult CF sibs [Fanos and Johnson, 1993: Am J Hum Genet 53:A51]. The purpose of this study was to identify factors motivating or interfering with the pursuit of carrier testing in adult CF sibs, Eighty-four adult CF sibs and their spouses, drawn from Children's Hos pital, Oakland, CA, and Children's Hospital, Boston, MA, were intervie wed for about an hour, and qualitative material was coded on various t hemes, Structural and psychological barriers to the transmission of ge netic information were identified: 1) sibs encountered difficulty in o btaining information concerning availability of testing; 2) parental g uilt and blame prevents parents hom discussing genetic issues with the sib; 3) sibs rarely discuss testing with each other; 4) the CF patien t or parent often has difficulty with the implications of the sib seek ing carrier testing; 5) family and individual myths about carrier stat us influence the sib's decision to seek testing; 6) statistical odds h ave lost meaning in families where the rare has already occurred; 7) t he sib fears loss of interpersonal desirability; and 8) carrier status can serve an important function in binding guilt, Remaining unaware o f their carrier status may serve significant psychological functions f or individuals at risk. (C) 1995 Wiley-Liss, Inc.