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. 2020 Jul;11(3):291-302.
doi: 10.1007/s12687-019-00450-7. Epub 2019 Dec 26.

Online BRCA1/2 screening in the Australian Jewish community: a qualitative study

Jeanette Yuen  1   2 , Nicole Cousens  3 , Kristine Barlow-Stewart  4 , Rosie O'Shea  4   5 , Lesley Andrews  3   6
Affiliations

Online BRCA1/2 screening in the Australian Jewish community: a qualitative study

Jeanette Yuen et al. J Community Genet. 2020 Jul.

Abstract

Screening programmes for BRCA1/2 Jewish Founder mutations (JFM) in the Jewish community have been advocated internationally. Implementation of these programmes could decrease morbidity and mortality of BRCA1/2 JFM carriers through the uptake of cancer screening strategies and risk-reducing surgery. An online programme offered to the Sydney Jewish community that delivers pre-test information and collects consent for BRCA1/2 JFM testing via a website is currently being evaluated (JeneScreen). Forty-three participants from JeneScreen were invited to participate in a sub-study, of semi-structured pre- and post-result telephone interviews. Eleven participants consented to the sub-study. The interviews explored their experiences regarding the online model of obtaining pre-test genetic information, giving consent and receiving results. Inductive thematic analysis was carried out on the interviews. Overarching themes identified include (1) embracing online testing, (2) the online pre-test experience, (3) the result notification experience, (4) concerns associated with online testing and (5) testing as a responsibility. Overall, participants were highly satisfied with online BRCA1/2 JFM testing, an indication that the a website for pre-test information provision is an acceptable alternative to in-person genetic counselling for BRCA1/2 JFM screening and represents a feasible model for future community screening efforts.

Keywords: BRCA1; BRCA2; Founder mutations; Jewish community; Online genetic testing; Population testing; Qualitative research.

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Conflict of interest statement

The authors declare that they have no conflict of interest.

Figures

Fig. 1
Fig. 1
Flow diagram of JeneScreen Program (grey) and Interview Study (blue) Design
See this image and copyright information in PMC

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