UC Irvine

This study was designed to asses the Persian-American Jewish community’s perceptions of the risk of genetic disorders and their attitudes toward testing and to determine whether disinterest in carrier screening is due to lack of education and resources about the disorders or due to fear of disapproval from the community. By forming a better understanding of this population, community based screening programs can be implemented to serve this at-risk population. A short anonymous survey was distributed online. In total, 202 individuals responded to the survey.

The risk for genetic disorders was generally underestimated within the study population, with a low level of knowledge pertaining to disorders more prevalent in their community. Attitudes toward genetic testing and screening were positive, with individuals of higher education levels scoring higher. The majority of participants were willing to undergo genetic carrier screening and testing, regardless of their demographic background. Levels of genetic knowledge did not impact participants’ willingness to undergo genetic testing. There was a higher association of stigma with respect to carrier status and ability to find a marriage partner, with individuals aged 45 and older less likely to approve of a marriage between an unaffected carrier and their family member. The majority of individuals preferred genetic education from their doctor or through a community program. The results of this study demonstrate the need for educational programs to target the Persian Jewish community and the establishment of screening programs to address the population’s willingness to undergo genetic carrier screening and testing.