PURPOSE: 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. CONCLUSION: 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.
PURPOSE: 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. CONCLUSION: 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.
Authors: Yelena P Wu; Lisa G Aspinwall; Elizabeth Nagelhout; Wendy Kohlmann; Kimberly A Kaphingst; Sheila Homburger; Ryan D Perkins; Douglas Grossman; Garrett Harding; Pamela Cassidy; Sancy A Leachman Journal: J Cancer Educ Date: 2018-08 Impact factor: 2.037
Authors: Lisa G Aspinwall; Jennifer M Taber; Wendy Kohlmann; Samantha L Leaf; Sancy A Leachman Journal: J Genet Couns Date: 2013-12-10 Impact factor: 2.537
Authors: Corinna L Schultz; Melissa A Alderfer; Robert B Lindell; Zachary McClain; Kristin Zelley; Kim E Nichols; Carol A Ford Journal: J Genet Couns Date: 2018-06-16 Impact factor: 2.537
Authors: Yelena P Wu; Kenneth Boucher; Nan Hu; Jennifer Hay; Wendy Kohlmann; Lisa G Aspinwall; Deborah J Bowen; Bridget G Parsons; Elizabeth S Nagelhout; Douglas Grossman; Kathi Mooney; Sancy A Leachman; Kenneth P Tercyak Journal: Psychooncology Date: 2019-11-10 Impact factor: 3.894
Authors: Lisa G Aspinwall; Jennifer M Taber; Wendy Kohlmann; Samantha L Leaf; Sancy A Leachman Journal: Genet Med Date: 2014-04-24 Impact factor: 8.822