Attitude towards and factors affecting uptake of population based BRCA testing in ashkenazi jews: a cohort study

R. Manchanda, M. Burnell, F. Gaba, S. Sanderson, K. Loggenberg, S. Gessler, J. Wardle, L. Side, R. Desai, A. Brady, H. Dorkins, Y. Wallis, C. Chapman, C. Jacobs, I. Tomlinson, U. Beller, U. Menon, I. Jacobs

Research output: Contribution to journalAbstractpeer-review


Objectives To evaluate the factors affecting interest, intention, uptake, and attitude towards unselected population-based BRCA-testing in the Ashkenazi Jewish (AJ) population.

Methods Design: Cohort-study set within recruitment to the GCaPPS-trial (ISRCTN73338115).

AJ women/men >18-years, from the North-London AJ-population were recruited through self-referral. AJ-women/men underwent pre-test counselling for BRCA-testing through recruitment clinics (clusters). Consenting individuals provided blood-sample for BRCA-testing. Socio-demographic/family-history/knowledge/psychological well-being data along-with benefits/risks/cultural-influences (18-item-questionnaire measuring ‘attitude’) were collected.

4-item likert-scales analysed initial ‘interest’ and ‘intention-to-test’ pre-counselling.

Uni-&-multivariable logistic-regression-models evaluated factors affecting uptake/interest/intention-to undergo BRCA-testing. Statistical inference was based on cluster robust standard-errors and joint Wald-tests for significance. Item-Response-Theory and graded-response-models modelled responses to 18-item questionnaire.

Main Outcome Measures: Interest, intention, uptake, attitude towards BRCA-testing

Results 935 AJ women (67%) and men (33%) underwent pre-test genetic-counselling (mean-age=53.8(S.D=15.02) years). Pre-counselling 96% expressed interest but 60% had clear intention-to undergo BRCA-testing. Subsequently 88% opted for BRCA-testing. BRCA-related knowledge (p=0.013) and degree-level education(p=0.01) were positively and negatively (respectively) associated with intention-to-test. Being married/cohabiting had four-fold higher-odds for BRCA-testing uptake (p=0.009). Perceived benefits were associated with higher pre-counselling odds for interest and intention-to undergo BRCA-testing. Reduced uncertainty/reassurance were the most important factors contributing to decision-making. Increased importance/concern towards risks/limitations (confidentiality/insurance/emotional-impact/inability to prevent cancer/marriage-ability/ethnic-focus/stigmatization) were significantly associated with lower-odds of uptake-of BRCA-testing, and discriminated between acceptors and decliners. Having children had stronger (p=0.005) while male-gender/degree-level-education (p=0.001) had weaker, attitudes towards BRCA-testing.

Conclusions BRCA testing in the AJ population has high acceptability. Pre-test counselling increases awareness of disadvantages/limitations of BRCA-testing, influencing the final cost-benefit perception and decision-making on undergoing testing.
Original languageEnglish
Article number81
Pages (from-to)A42-A43
Number of pages2
JournalInternational Journal of Gynecological Cancer
Early online date18 Sep 2019
Publication statusPublished - Sep 2019


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