Tay-Sachs disease carrier screening: A 21-year experience

This paper presents the findings of a community-based carrier screening pro gram for Tay-Sachs disease, initiated on the University of Wisconsin-Madiso n campus in 1978, The Madison Community Tay-Sachs Screening Program (MCTSSP ) is a collaborative, interdisciplinary program that organizes and conducts periodic screening for Tay-Sachs disease (TSD) for the purpose of identify ing Tay-Sachs carriers. We present and analyze data on carrier detection wi th regard to various demographics, including family history of TSD, ancestr y, gender, medication exposure, and illness. Individuals participating in t he MCTSSP between 1978 and 1999 were primarily of the target population, an d the carrier rate was within the expected range (1/25). Despite aggressive publicity efforts and a well-established program, attendance at the screen s has declined. A recent survey of Jewish undergraduate students at the Uni versity of Wisconsin-Madison showed poor recall of family screen history an d carrier status and reinforced the perception that utilization of the Madi son screening program has been low, Ways to increase awareness of and inter est in carrier screening for TSD are explored.