Parental preferences for CDKN2A/p16 testing of minors.
OBJECTIVE
Genetic testing of minors is controversial, as ethical considerations depend on multiple aspects of the particular disease and familial context. For melanoma, there is a well-established and avoidable environmental influence and a documented benefit of early detection.


METHODS
We surveyed 61 CDKN2A/p16 mutation-tested adults from two kindreds about their attitudes toward genetic testing of minors immediately posttesting and 2 years later.


RESULTS
Overall, 86.9% expressed support of melanoma genetic testing of minors, with the importance of risk awareness (77.4%) and the likelihood of improved prevention and screening behaviors (69.8%) as the most frequently cited potential benefits. Among mutation carriers, 82.6% wanted genetic testing for their own children. These preferences remained stable over a 2-year period. Most respondents (62.3%) favored complete involvement of their children in genetic counseling and test reporting; 19.7% suggested that children be tested but not informed of the results. Concerns about inducing psychological distress or compromising children's decision autonomy were infrequently cited. Testing preferences did not vary by respondent age, gender, or melanoma history.


CONCLUSIONS
Respondents strongly supported melanoma genetic testing of minors, with most citing improved health behavior as a likely outcome. We discuss options for melanoma genetic counseling and testing of minors.
Department of Psychology, University of Utah, Salt Lake City, Utah 84112-0251, USA.
Jennifer M
JM
Taber
Lisa G
LG
Aspinwall
Wendy
W
Kohlmann
Reed
R
Dow
Sancy A
SA
Leachman
D000328:Adult; D017668:Age of Onset; D000368:Aged; D000369:Aged, 80 and over; D019941:Cyclin-Dependent Kinase Inhibitor p16 / Q000235:genetics*; D005260:Female; D005500:Follow-Up Studies; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000706:statistics & numerical data*; D006579:Heterozygote; D006801:Humans; D008297:Male; D008545:Melanoma / Q000175:diagnosis / Q000453:epidemiology / Q000235:genetics; D008875:Middle Aged; D033242:Minors; D033282:Parental Consent / Q000706:statistics & numerical data; D057240:Patient Preference / Q000706:statistics & numerical data*; D012878:Skin Neoplasms / Q000175:diagnosis / Q000453:epidemiology / Q000235:genetics; D055815:Young Adult
D019941:Cyclin-Dependent Kinase Inhibitor p16