Knowledge, Attitudes, and Barriers to Carrier Screening for the Ashkenazi Jewish Panel: a Florida Experience : Education and Barriers Assessment for Jewish Genetic Diseases

Overview

Journal J Community Genet

Publisher Springer

Specialty Health Services

Date 2014 Jan 14

PMID 24415495

Citations 5

Authors

Jessica R L Warsch

Sean Warsch

Elizabeth Herman

Lauren Zakarin

Adele Schneider

Jodi Hoffman

Deborah Wasserman

Deborah Barbouth

Affiliations

Soon will be listed here.

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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