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Genetic testing for BRCA1 : effects of a randomised study of knowledge provision on interest in testing and long term test uptake ; implications for the NICE guidelines . INTRODUCTION Interest in searching for mutations in BRCA1 and BRCA2 is high . Knowledge regarding these genes and the advantages and limitations of genetic testing is limited . It is unknown whether increasing knowledge about breast cancer genetic testing alters interest in testing . METHODS Three hundred and seventy nine women ( 260 with a family history of breast cancer ; 119 with breast cancer ) from The Royal Marsden NHS Foundation Trust were randomised to receive or not receive written educational information on cancer genetics . A questionnaire was completed assessing interest in BRCA1 testing and knowledge on breast cancer genetics and screening . Actual uptake of BRCA1 testing is reported with a six year follow-up . RESULTS Eighty nine percent of women at risk of breast cancer and 76 % of women with breast cancer were interested in BRCA1 testing ( P < 0.0001 ) . Provision of educational information did not affect level of interest . Knowledge about breast cancer susceptibility genes was poor . According to the NICE guidelines regarding eligibility for BRCA1 and BRCA2 testing , the families of 66 % of the at risk group and 13 % of the women with breast cancer would be eligible for testing ( probability of BRCA1 mutation > or=20 % ) . Within six years of randomisation , genetic testing was actually undertaken on 12 women , only 10 of whom would now be eligible , on the NICE guidelines . CONCLUSIONS There is strong interest in BRCA1 testing . Despite considerable ignorance of factors affecting the inheritance of breast cancer , education neither reduced nor increased interest to undergo testing . The NICE guidelines successfully triage those with a high breast cancer risk to be managed in cancer genetics clinics .
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Intervention_Physical
Genetic testing for
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Intervention_Physical
receive or
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Intervention_Control
not receive
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Intervention_Educational
written educational information
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Intervention_Educational
questionnaire
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Intervention_Physical
testing
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Outcome_Mental
interest in
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Outcome_Physical
BRCA1
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Outcome_Mental
testing
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Outcome_Physical
BRCA1
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Outcome_Mental
testing
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Outcome_Physical
BRCA1
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Outcome_Mental
testing
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Outcome_Mental
level of interest
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Outcome_Mental
Knowledge about breast cancer susceptibility genes
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Outcome_Other
genetic testing
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Outcome_Mental
interest to undergo testing