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.
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Acknowledgments
We want to thank Lois Victor, Debby Hirshman, Shoshana Rosen, and Faye Shapiro for their work and support, and to our medical students Danielle Aharonoff and Marissa Orenstein for their review and edits. We are also very grateful to the many volunteers who participated at the educational and screening fairs.
Compliance and ethics guidelines
The experiments comply with the current laws of the country in which they were performed.
Conflict of interest
The authors declare no conflicts of interest.
Funding
This study was funded by the Lois B. Victor Foundation.
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Warsch, J.R.L., Warsch, S., Herman, E. et al. Knowledge, attitudes, and barriers to carrier screening for the Ashkenazi Jewish panel: a Florida experience. J Community Genet 5, 223–231 (2014). https://doi.org/10.1007/s12687-013-0179-4
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DOI: https://doi.org/10.1007/s12687-013-0179-4