Evaluating the model of offering expanded genetic carrier screening to high school students within the Sydney Jewish community

Abstract

Programs offering reproductive genetic carrier screening (RGCS) to high school students within the Ashkenazi Jewish community in several countries including Canada and Australia have demonstrated high uptake and retention of educational messages over time. This study was undertaken to evaluate whether testing for an expanded number of conditions in a high school setting would impact the effectiveness of education. In this questionnaire-based study, genetic carrier testing for nine conditions was offered to 322 year 11 students from five high schools, with students attending a compulsory 1-h education session prior to voluntary testing. Comparison of pre- and post-education measures demonstrated a significant increase in knowledge, positive attitudes, and reduced concern immediately after the education session. Retention of knowledge, measures of positive attitude, and low concern over a 12-month period were significantly higher than baseline, although there was some reduction over time. In total, 77% of students exhibited informed choice regarding their intention to test. A significant increase in baseline knowledge scores and positive attitude was also demonstrated between our original 1995 evaluation (with testing for only one condition) and 2014 (testing for nine conditions) suggesting community awareness and attitudes to RGCS have increased. These findings validate the implementation of effective education programs as a key component of RGCS and are relevant as gene panels expand with the introduction of genomic technologies.

Keywords: Ashkenazi Jewish community genetics screening; Expanded genetic carrier testing; Genetics education; High school screening program; Pre-conception reproductive carrier testing.

Fig. 1

Knowledge of genetics topics over time, score by topic (% correct) for 2014 data. Significance represented by **p<0.001, *p<0.05, ns represents not significant

Fig. 2

Retention of knowledge of nine genetics topics, score by topic. Percentage of Jewish and non-Jewish students (n=161) who answered questions in each topic area correctly. *p<0.05, **p<0.01, ***p<0.001 Wilcoxon signed-rank test for comparison of T2 (immediately post-education) and T3 (~12 months post-education) data

Fig. 3

Ten knowledge questions conserved between 1995 and 2014. (F) = false, (T) = true. *p<0.05, ***p<0.001 for comparison of the percentage of students who correctly answered each knowledge question in 1995 vs. 2014 using χ² test. Grey and black asterisks represent a significant difference between pre-education and post-education results respectively