Health behavior and genetic screening for carriers of Tay-Sachs disease: A prospective study

Abstract

This study explores the factors associated with participation in a screening program for Tay-Sachs Disease among Jewish university students. Tay-Sachs Disease is an always fatal recessive genetic condition found primarily among Jews from central and eastern European backgrounds. Baseline data regarding knowledge and attitudes towards health, genetic disease, and Tay-Sachs was gathered by a mail questionnaire of a random sample of Jewish students at UCLA. One month later an intensive four week educational campaign about Tay-Sachs was mounted on campus. This was followed by three days of free Tay-Sachs screenings for anyone at UCLA. One hundred (23.8%) of the students in the baseline study were among the 1845 people who elected to be screened. Those students choosing to be screened were significantly different from those not so choosing by their increased desire to have children, their knowledge about Tay-Sachs Disease and their strength of identity as Jews. Discriminant analysis shows that Jewish identity is by far the most important variable. However, the three variables together account for only a small portion of the variance in explaining which students were tested. The major variables of the Health Belief Model, perceived susceptibility and perceived seriousness, were found not to be related to engaging in this particular health behavior. Some practical implications for increasing participation in genetic screening programs are discussed.