Family members' perceptions of genetic testing for malignant melanoma – A prospective interview study

PurposeThe aim was to prospectively explore experiences related to genetic testing for malignant melanoma among unaffected previously untested members of melanoma-prone families in which germline CDKN2A mutations had been identified.MethodConsecutive members of families with CDKN2A mutation attending a pigmented lesion clinic (n = 11) were interviewed and completed questionnaires at four occasions: before genetic testing, at disclosure of genetic test result and six months and one year after disclosure. The following areas were measured: anxiety and depression, risk perception, and sun-related habits.ResultsDisclosure of the test result did not seem to change family members' perception of their risk of developing melanoma. Few members reported anxiety of clinical significance and no one were depressed. All family members with biological children expressed concerns regarding their children and emphasized the importance of sun protection and surveillance. Sun burns and blisters were rather commonly reported by the family members. Routines regarding the procedure for conveying test result were requested.ConclusionGenetic testing of the members of melanoma families with CDKN2A mutations attending a pigmented lesion clinic did not appear to induce behavioral changes related to sun habits or emotional problems. Concerns about the future of their children were commonly expressed by participants.