Session II: implications for clinical practice

2. The patient/client’s viewpoint on genetic risk assessment in the context of cancer genetics

Lindsay Prior

Reader in Sociology, Cardiff University

Lay people’s responses to personal risk information can be unpredictable, and surprising to medical professionals. In addition people’s own assessment of their risk status can depend on perceptions of physical resemblance to family members, or feelings of emotional closeness. Dr Prior discussed results from a series of interviews with people who had been categorised as low, moderate or high risk for breast, ovarian or colon cancer.

Intriguing quotes illustrated that patients tend to focus on the resources that may be available to them in response to being given risk information, and can continue to hold their own perception of their risk status whether the professional view coincides or not. Low- or no-risk advice may not necessarily be “good news”, and written confirmation of this status can fail to reassure.

“ I am glad because for me to be told that I will be monitored at the age of 40 is great….. its nice to know that there is that support“ [subject assessed as moderate risk for breast cancer]

“.. even though there is not enough on my mother’s side to have the test, if there was a link possibly on my father’s side, because it was two brothers and a sister, all dying relatively young from cancer, so we might get some luck going down that line. So I will pursue that.” [subject assessed as low risk for breast cancer]

“I wasn't particularly worried about the genetic aspect of it, because as far as I am concerned I am more at risk anyway.

… It was just really I wanted increased supervision … “ [subject assessed as moderate risk for breast cancer]

“Its just seems to be too much co-incidence that so many people in my family all on my mum's side

… reading a letter which says 'you are not in a higher risk' does not put my mind at rest at all. Not at all. “ [subject assessed as low risk for ovarian/breast cancer]

Dr Prior pointed out that dissatisfaction with a consultation is likely to result when the patient’s and professional’s risk assessments do not match, and that this is most common with low risk groups. He argued that another challenge for health professionals is that most people fail to take account of the fact that risk status can change if there is another relevant event in the family.