A research study about personal genetic risk of melanoma among the general population

Participants randomised to the intervention arm will receive: 1) Personal information about their melanoma genetic risk. 2) Telephone access to a genetic counsellor; 3) Printed and electronic general educational materials on melanoma preventive behaviours including sun exposure, sun protection and skin examinations. Determination of genetic risk: From participants’ saliva samples, we will genotype specific variants in 20 genes that have a confirmed association with melanoma risk. All variants will have been identified through adequately powered and replicated large, international studies. Genetic risk estimates for melanoma will be presented both as: 1) an absolute-risk and relative-risk estimate of the participant’s lifetime risk of developing melanoma; and 2) a broad genetic risk level – low, average, high. Participants will not be given their individual genotypes, only the risk estimates derived from them. A person’s lifetime risk of melanoma based on the 20 selected genomic variants will be estimated using published statistical methodology. The calculation assumes a multiplicative model and is based on the person’s genomic variation, the odds ratio for melanoma associated with each variant’s risk allele from replication studies or meta-analyses, the corresponding population frequency of each risk allele, and age- and sex-specific melanoma residual lifetime risk estimates from NSW cancer incidence data. Communication of information on personal melanoma genetic risk: When it is time to give the participant the information on their personal genetic risk of melanoma, they will be contacted by telephone by the study’s genetic counsellor. At this time, the genetic counsellor will ask whether or not the participant has any questions or concerns and will check that they still wish to receive this information (verbal consent) before talking to them about their personal melanoma genetic risk derived from their saliva sample. When speaking to the genetic counsellor, participants can decide whether they would like to 1) receive their risk information from the genetic counsellor over the telephone, followed by receiving the same information in a written format; or 2) whether they would prefer not to speak to the genetic counsellor at that time, but would prefer to first receive their risk information in a written format. Regardless of whether or not participants elect to receive their risk information first over the telephone from the genetic counsellor, all participants will receive written communication of their personal melanoma genetic risk either via mailed letter or emailed letter (according to personal preference as indicated on the Consent Form). If the participant has any further questions about the information we send them, they can contact the study’s genetic counsellor by telephone to discuss further. The genetic counsellor will provide a mandatory follow up call to all those participants who elect to wait to receive their risk information via letter where the results indicate a high risk. There is no limit on the number and duration of telephone-based counselling sessions. A qualified genetic counsellor will administer the sessions.