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81 Attitude towards and factors affecting uptake of population based BRCA testing in ashkenazi jews: a cohort study
  1. R Manchanda1,
  2. M Burnell2,
  3. F Gaba1,
  4. S Sanderson3,
  5. K Loggenberg4,
  6. S Gessler5,
  7. J Wardle3,
  8. L Side6,
  9. R Desai5,
  10. A Brady7,
  11. H Dorkins8,
  12. Y Wallis9,
  13. C Chapman10,
  14. C Jacobs11,
  15. I Tomlinson12,
  16. U Beller13,
  17. U Menon2 and
  18. I Jacobs14
  1. 1Queen Mary University of London and Barts Health NHS Trust, Barts Cancer Institute, London, UK
  2. 2University College London, MRC Clinical Trials Unit, London, UK
  3. 3University College London, Behavioral Sciences Unit- Department of Epidemiology and Public Health, London, UK
  4. 4Great Ormond Street Hospital, North East Thames Regional Genetics Service, London, UK
  5. 5University College London, Department of Womens Cancer, London, UK
  6. 6University Hospital Southampton NHS Foundation Trust, Clinical Genetics, Southampton, UK
  7. 7Northwick Park Hospital, Dept Clinical Genetics- North West Thames Regional Genetics Unit, London, UK
  8. 8University of Oxford, St Peter’s College, Oxford, UK
  9. 9Birmingham Women’s NHS Foundation Trust, West Midlands Regional Genetics Laboratory, Birmingham, UK
  10. 10Birmingham Women’s NHS Foundation Trust, Dept Clinical Genetics- West Midlands Regional Genetics Service, Birmingham, UK
  11. 11University of Technology Sydney, Genetics, Sydney, Australia
  12. 12University of Birmingham, Institute of Cancer and Genomic Sciences, Birmingham, UK
  13. 13Shaare Zedek Medical Center, Department of Gynaecology, Jerusalem, Israel
  14. 14University of New South Wales, Chancellery Building, Sydney, Australia


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.

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