Psychosocial impact of the lack of information given at referral about familial risk for cancer

We aimed to identify patient' information and communication needs irrespective of their risk level, when they are referred for genetic risk assessment and genetic counselling for a predisposition to cancer. Semi-structured telephone interviews were conducted with a purposive sample of individuals referred to a clinical genetics unit for a risk assessment of their genetic predisposition to either breast, ovarian or colorectal cancer and stratified by their level of risk. Triangulation was achieved by focus groups conducted with specialist genetic health professionals. Twenty-three participants were interviewed pre- and post-genetic counselling or risk assessment. A further 11 completed a single interview, five pre-assessment and six post-assessment. Three focus groups were conducted with the genetic health professionals. The results showed that many participants were unaware they had been referred for genetic counselling and as a consequence they felt this caused difficulties in coping with the genetic risk information received. Health professionals corroborated these findings of people's lack of awareness about their referral. This work raises important questions about the psychosocial consequences of inadequate information provision at the point of referral by clinicians in primary and hospital-based healthcare that are responsible for referring the majority of people to clinical genetics units.