TY - JOUR
T1 - Tay-Sachs disease carrier screening
T2 - A 21-year experience
AU - D'Souza, G.
AU - McCann, C. L.
AU - Hedrick, J.
AU - Fairley, C.
AU - Nagel, H. L.
AU - Kushner, J. D.
AU - Kessel, R.
PY - 2000
Y1 - 2000
N2 - This paper presents the findings of a community-based carrier screening program for Tay-Sachs disease, initiated on the University of Wisconsin-Madison 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 identifying Tay-Sachs carriers. We present and analyze data on cartier detection with regard to various demographics, including family history of TSD, ancestry, gender, medication exposure, and illness. Individuals participating in the MCTSSP between 1978 and 1999 were primarily of the target population, and the carrier rate was within the expected range (1/25). Despite aggressive publicity efforts and a well-established program, attendance at the screens has declined. A recent survey of Jewish undergraduate students at the University of Wisconsin-Madison showed poor recall of family screen history and carrier status and reinforced the perception that utilization of the Madison screening program has been low. Ways to increase awareness of and interest in carrier screening for TSD are explored.
AB - This paper presents the findings of a community-based carrier screening program for Tay-Sachs disease, initiated on the University of Wisconsin-Madison 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 identifying Tay-Sachs carriers. We present and analyze data on cartier detection with regard to various demographics, including family history of TSD, ancestry, gender, medication exposure, and illness. Individuals participating in the MCTSSP between 1978 and 1999 were primarily of the target population, and the carrier rate was within the expected range (1/25). Despite aggressive publicity efforts and a well-established program, attendance at the screens has declined. A recent survey of Jewish undergraduate students at the University of Wisconsin-Madison showed poor recall of family screen history and carrier status and reinforced the perception that utilization of the Madison screening program has been low. Ways to increase awareness of and interest in carrier screening for TSD are explored.
UR - http://www.scopus.com/inward/record.url?scp=0033697443&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=0033697443&partnerID=8YFLogxK
U2 - 10.1089/10906570050501470
DO - 10.1089/10906570050501470
M3 - Article
C2 - 11142756
AN - SCOPUS:0033697443
SN - 1090-6576
VL - 4
SP - 257
EP - 263
JO - Genetic Testing
JF - Genetic Testing
IS - 3
ER -