How Disturbing Is It to Be Approached for a Genetic Cascade Screening Programme for Familial Hypercholesterolaemia?

OBJECTIVES: To assess the screenees' views on, and the psychological impact of, a family-based genetic screening programme for familial hypercholesterolaemia (FH) and to evaluate non-participation. METHODS: Self-administered questionnaires were filled out at the time of screening and after communication of the test result. Non-participants were interviewed by phone. RESULTS: Of the people approached for screening, 2% did not participated. These 2% were not interested, had already been clinically diagnosed, or were afraid of insurance consequences. 677 screenees participated, of whom 215 (32%) tested FH positive. Less than 5% of the screenees were critical of the approach and the information provided. 20% of the screenees expressed feelings of social pressure. Effects on mood were minimal to absent, as were general 'quality of life' effects. CONCLUSIONS: Screening for FH is highly acceptable to screenees, although social pressure is prevalent. Only a small percentage of people being approached did not participate.