Josie Pervola1,2, Melanie F Myers1,2, Michelle L McGowan3,4, Cynthia A Prows5,6. 1. College of Medicine, University of Cincinnati, Cincinnati, OH, USA. 2. Division of Human Genetics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA. 3. Ethics Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA. 4. Department of Pediatrics & Women's, Gender & Sexuality Studies, University of Cincinnati, Cincinnati, OH, USA. 5. Division of Human Genetics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA. cindy.prows@cchmc.org. 6. Patient Services, Cincinnati Children's Hospital Medical Center Cincinnati, Cincinnati, OH, USA. cindy.prows@cchmc.org.
Abstract
PURPOSE: The American College of Medical Genetics and Genomics supports parents' opting in or out of secondary analysis of 59 genes when their child has clinical exome/genome sequencing. We explored the reasons adolescents choose to learn certain types of results and the reasons they want to involve or not involve parents in decision-making. METHODS: Adolescents recruited without clinical indication were offered independent, followed by joint choices with a parent to learn genomic results. After making independent choices, adolescent/parent dyads were interviewed to explore the reasons for their choices. Interviews were audio-recorded and transcribed. The constant comparative method was used to analyze 64 purposefully selected transcripts that included 31 from adolescents who excluded some or all potential results. RESULTS: Three major themes informed adolescents' choices: (1) actionability of information, (2) knowledge seeking, and (3) psychological impact. Of adolescents who independently excluded some conditions (n=31), 58% changed their initial choices during the joint interview due to parental influence or improved understanding. Nearly all adolescents (98%) wanted to be involved in the decision-making process, and 53% wanted to make choices independently. CONCLUSIONS: Our findings contribute empirical evidence to support the refinement of professional guidelines for adolescents' engagement and preferences in genetic testing decisions.
PURPOSE: The American College of Medical Genetics and Genomics supports parents' opting in or out of secondary analysis of 59 genes when their child has clinical exome/genome sequencing. We explored the reasons adolescents choose to learn certain types of results and the reasons they want to involve or not involve parents in decision-making. METHODS: Adolescents recruited without clinical indication were offered independent, followed by joint choices with a parent to learn genomic results. After making independent choices, adolescent/parent dyads were interviewed to explore the reasons for their choices. Interviews were audio-recorded and transcribed. The constant comparative method was used to analyze 64 purposefully selected transcripts that included 31 from adolescents who excluded some or all potential results. RESULTS: Three major themes informed adolescents' choices: (1) actionability of information, (2) knowledge seeking, and (3) psychological impact. Of adolescents who independently excluded some conditions (n=31), 58% changed their initial choices during the joint interview due to parental influence or improved understanding. Nearly all adolescents (98%) wanted to be involved in the decision-making process, and 53% wanted to make choices independently. CONCLUSIONS: Our findings contribute empirical evidence to support the refinement of professional guidelines for adolescents' engagement and preferences in genetic testing decisions.
Authors: Christin Hoell; Julia Wynn; Luke V Rasmussen; Keith Marsolo; Sharon A Aufox; Wendy K Chung; John J Connolly; Robert R Freimuth; David Kochan; Hakon Hakonarson; Margaret Harr; Ingrid A Holm; Iftikhar J Kullo; Philip E Lammers; Kathleen A Leppig; Nancy D Leslie; Melanie F Myers; Richard R Sharp; Maureen E Smith; Cynthia A Prows Journal: Genet Med Date: 2020-07-16 Impact factor: 8.864
Authors: Georgia L Wiesner; Alanna Kulchak Rahm; Paul Appelbaum; Sharon Aufox; Sarah T Bland; Carrie L Blout; Kurt D Christensen; Wendy K Chung; Ellen Wright Clayton; Robert C Green; Margaret H Harr; Nora Henrikson; Christin Hoell; Ingrid A Holm; Gail P Jarvik; Iftikhar J Kullo; Philip E Lammers; Eric B Larson; Noralane M Lindor; Maddalena Marasa; Melanie F Myers; Josh F Peterson; Cynthia A Prows; James D Ralston; Hila Milo Rasouly; Richard R Sharp; Maureen E Smith; Sara L Van Driest; Janet L Williams; Marc S Williams; Julia Wynn; Kathleen A Leppig Journal: J Pers Med Date: 2020-04-27
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Authors: Juliann M Savatt; Jennifer K Wagner; Steven Joffe; Alanna Kulchak Rahm; Marc S Williams; Angela R Bradbury; F Daniel Davis; Julie Hergenrather; Yirui Hu; Melissa A Kelly; H Lester Kirchner; Michelle N Meyer; Jessica Mozersky; Sean M O'Dell; Josie Pervola; Andrea Seeley; Amy C Sturm; Adam H Buchanan Journal: BMC Pediatr Date: 2020-05-15 Impact factor: 2.125