Genetic Test Reporting and Counseling for Melanoma Risk in Minors May Improve Sun Protection Without Inducing Distress

Abstract

Genetic testing of minors is advised only for conditions in which benefits of early intervention outweigh potential psychological harms. This study investigated whether genetic counseling and test reporting for the CDKN2A/p16 mutation, which confers highly elevated melanoma risk, improved sun protection without inducing distress. Eighteen minors (M_age = 12.4, SD = 1.9) from melanoma-prone families completed measures of protective behavior and distress at baseline, 1 week (distress only), 1 month, and 1 year following test disclosure. Participants and their mothers were individually interviewed on the psychological and behavioral impact of genetic testing 1 month and 1 year post-disclosure. Carriers (n = 9) and noncarriers (n = 9) reported significantly fewer sunburns and a greater proportion reported sun protection adherence between baseline and 1 year post-disclosure; results did not vary by mutation status. Anxiety symptoms remained low post-disclosure, while depressive symptoms and cancer worry decreased. Child and parent interviews corroborated these findings. Mothers indicated that genetic testing was beneficial (100%) because it promoted risk awareness (90.9%) and sun protection (81.8%) without making their children scared (89.9%); several noted their child's greater independent practice of sun protection (45.4%). In this small initial study, minors undergoing CDKN2A/p16 genetic testing reported behavioral improvements and consistently low distress, suggesting such testing may be safely implemented early in life, allowing greater opportunity for risk-reducing lifestyle changes.

Keywords: CDKN2A/p16; Children; Familial melanoma; Genetic counseling; Prevention; Sun protection.

Fig. 1

Participant identification, recruitment, and retention for the BRIGHT Kids Study

Fig. 2

Sunburns, sun protection, and SSE frequency in past month reported by carrier and noncarrier minors at baseline, 1 month, and 1 year following genetic counseling and test disclosure. Notes. Percentages are calculated within each group at each timepoint. At baseline, one noncarrier did not provide a response to the SSE frequency question. Sun protection involved doing at least one behavior (using sunscreen, protective clothing, or a hat, seeking shade, avoiding peak exposure) often or always. ^ denotes changes marginally significant change from baseline (p < .10). * denotes changes significant change from baseline (p < .05)

Fig. 3

Psychological distress reported in carrier and noncarrier minors receiving melanoma genetic test results prior to 1 week, 1 month, and 1 year following genetic counseling and test disclosure. Notes. Means at the 1-week post-counseling visit reflect the subset who completed that assessment (n = 15); other means reflect full sample (n = 18). For depression (but not anxiety or cancer worry), clinical cutoffs for elevated distress are available; among those 12 or younger, cutoffs for elevated depressive symptoms are 14 for females and 17 for males, and among those older than 12, cutoffs are 20 for females and 16 for males. ^ denotes marginally significant decrease from baseline (p < .10). * denotes significant decrease from baseline (p < .05)