<--> SHORE-C: Sussex Health Outcomes Research and Education in Cancer

SHORE-C educational training program: TRUSTING (Talking about Risk, UncertaintieS of Testing IN Genetics)


Genetic testing of women at high risk of developing breast cancer is not new, but there are increasing calls to offer BRCA I/II testing to all breast cancer patients to assist treatment planning. Many clinicians who interact with patients are not experienced in genetic testing and many genetic counsellors are not experienced in cancer care. Both nevertheless may be faced with challenging conversations about genetic risk with patients and their relatives.

These issues were explored during interviews with BRCA positive women and the health care professionals (HCPs) treating them, to gather material to inform an educational training program: TRUSTING (Talking about Risk, UncertaintieS of Testing IN Genetics).

TRUSTING comprises six scenarios. The modules follow one patient Anna Saunders, a 49 year old mother with a triple negative breast cancer diagnosis as she interacts with:-

1) her surgeon discussing BRCA testing Anna discussing BRCA testing with her surgeon

2) a genetic counsellor Anna with a genetic counsellor

3) a geneticist disclosing results A geneticist disclosing results to Anna

4) the impact that a positive BRCA II test result has for her sisterAnna's sister Jo

5) her very anxious cousin who consults a geneticist when her test shows she does not have the changed geneAnna's cousin, Emma

but 6) still seeks help from a breast surgeon.Emma consulting a breast surgeon

In addition there is a filmed interview with Dame Lesley asking Prof Gareth Evans (clinical geneticist) about the advances in BRCA testing, and his questions and opinions about the individuals in each of the scenarios.

Before providing these freely to facilitators and other appropriate organisations, we need to determine their impact on HCPs when talking about risk, and the uncertainties of genetic testing. The next stage is to evaluate the programme over 2 days.

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