Community attitudes towards a Jewish community BRCA1/2 testing program.

Cousens N1, Kaur R2, Meiser B2, Andrews L3,4.

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Abstract

About 2.5 % of the Ashkenazi-Jewish population carry one of three "founder" mutations in BRCA1 and BRCA2 (BRCA1/2). Currently, testing is offered to Jewish people with a personal and/or family history of breast and/or ovarian cancer; however less than half of BRCA1/2 carriers within the Jewish population are aware of their family history. Population-based testing in other countries has shown to greatly increase the number of mutation carriers identified, compared to targeted testing of people with a family history. We aimed to assess the Australian Jewish community's attitudes towards such a program, including acceptability and interest in having education and testing offered online. Members of Sydney-based Jewish organisations who self-identified as being Jewish were invited by e-mail to participate in an online survey. Of 370 individuals who completed the survey, 96.8 % supported a Jewish community-based BRCA1/2 testing program, and 65.6 % reported being personally interested in undergoing the test. Younger adults aged below 50 years were more interested in undergoing the test than those aged 50 years and above. Almost half (42.9 %) were aware of a family member with breast and/or ovarian cancer; however, of these, 77.1 % had not yet undergone testing. Sixty-five (65.1 %) percent were satisfied with providing consent online, while only 39.6 % of participants' first preference for method of information provision was online. Given the high level of support, and interest in a community testing program, the development and evaluation of a cost-effective and interactive, online BRCA1/2 community testing program appears warranted.