Knowledge, attitudes, and barriers to carrier screening for the Ashkenazi Jewish panel: a Florida experience

Abstract

The knowledge, attitudes, and barriers to Jewish genetic diseases (JGDs) and screening and their relative importance in reproductive decision-making were assessed in a population-based sample of Ashkenazi Jewish young adults in Florida. These adults attended educational screening fairs hosted by The Victor Center for the Prevention of Jewish Genetic Diseases at the University of Miami. Parametric and nonparametric tests were used as appropriate to analyze data from a single group pretest/posttest design. Four hundred twelve individuals (mean age = 24.9; 54.7 % female, 45.3 % male) completed the questionnaires. Participants' level of knowledge increased from pre- to post-intervention (81.4 vs. 91.0 %; p < 0.0001). Concern about the possibility of being a carrier of a JGD was significantly higher after an educational session (5-point Likert scale mean difference = 0.45; p < 0.0001), as was their level of concern regarding having an affected child (mean difference = 0.20; p < 0.0001). The number of participants who agreed or strongly agreed that the test results would not have any influence on their reproductive behavior was lower after the session (17.2 vs. 20.8 %; p < 0.0001). This study demonstrates that an educational carrier screening program increased knowledge and elucidated awareness of the attitudes and barriers toward JGDs and carrier screening.

Do people from the Jewish community prefer ancestry-based or pan-ethnic expanded carrier screening?

“…Previous studies also show positive attitudes regarding carrier screening among people from AJ ancestry. 5,18,19 Factors described to contribute to the high receptiveness of this community towards screening include the close involvement of the community, and consensus in favor of avoiding affected births. 20 Furthermore, half of the respondents planning to have children in our study intended to have a carrier screening test.…”

Preconception carrier screening for multiple disorders: evaluation of a screening offer in a Dutch founder population

“…However, these studies mainly focused on screening for one disorder with a relative small proportion of detected carriers and mostly no carrier couples. Few studies have been published about the evaluation of carrier screening for multiple disorders simultaneously [9,10], including studies aimed at individuals of Ashkenazi Jewish descent [10][11][12]. One study explored the experiences of Australian women who received positive results after prenatal carrier screening on three conditions, showing an essential role of genetic counselors and the importance to improve public awareness in screening programs [13].…”

Experiences among Women with Positive Prenatal Expanded Carrier Screening Results

“…One intervention targeting Ashkenazi Jews found positive outcomes with pre-test education (Warsch et al 2014). For this intervention, 412 young Ashkenazi Jewish men and women attended oral presentations by a medical geneticist conveying general concepts and causes of genetic disease and inheritance, specific information about Ashkenazi Jewish genetic diseases, sensitivity of screening tests and interpretation of results, reproductive options, and ethical considerations.…”

“…At the conclusion, attendees were offered the opportunity to be tested at that time (free-of-charge) or schedule an appointment. In addition to overall knowledge significantly increasing, there was also a significant increase in the percentage of participants who stated the test results would influence their reproductive behavior (Warsch et al 2014). However, with the increase in the number of conditions being screened for, there is more information to convey and national recommendations do not encourage education about each disease for expanded carrier screening (Edwards et al 2015).…”