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Adolescents Share their Views: A Qualitative Analysis of Adolescents' Preferences for Learning Genomic Sequencing Results

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2018, MS, University of Cincinnati, Medicine: Genetic Counseling.
Next generation sequencing integration into clinical and research settings has sparked debate about the return of genomic sequencing results, particularly for minors. The American College of Medical Genetics (ACMG) states that when undergoing clinical whole exome or genome sequencing, medically actionable results should be returned for 59 genes, regardless of the age of the individual. These recommendations conflict with long standing recommendations to defer predictive testing for adult onset conditions until the age of the majority. The ACMG recommendations do support parents’ choices to opt in or out of secondary analysis for their child’s 59 genes; yet there is no consideration of soliciting adolescents’ preferences and choices in these decisions. While adult and parental preferences have been studied, there is limited data about the involvement of adolescents in the decision-making process and their choices in the return of genomic sequencing results, particularly for adult onset disorders and carrier-status. This study aimed to provide empirical evidence for the reasons adolescents choose to learn, or not learn, sequencing results for carrier-status, conditions that are or are not preventable, treatable, or are adult-onset. We also aimed to capture the type of involvement adolescents wanted when making these testing decisions. Methods: After making decisions about learning genomic research results, we interviewed adolescents and one of their parents to explore the reasoning behind their choices. Interviews were audio-recorded and transcribed. Transcripts were analyzed using a constant comparative method, and deductive and inductive codes were used for thematic analysis. Results: Among 64 adolescents sampled, aged 13-17, thirty-three adolescents chose to learn all results, and thirty-one adolescents chose to exclude certain results. Reasons expressed among adolescents who chose to learn all results included an importance of having knowledge, being able to use information for action, and benefits to family members; Reasons for not wanting to learn about certain results included inactionability, concern for increased psychological impact, and/or did not value knowledge of information. The most commonly excluded conditions among adolescents were conditions that were not treatable and not preventable. Majority of adolescents (98%) wanted to be involved in the decision making process, and over half (n=34) wanted to make their choices independently. Conclusions: The findings in our study may inform guidance in policy recommendations for secondary results and predictive testing for adolescents, as well as a model for how to ethically engage adolescents into testing decisions with their parents and healthcare providers. Key words: adolescents, genomic sequencing results, preferences, predictive testing, qualitative analysis
Cynthia Prows, R.N. M.S.N. (Committee Chair)
Michelle Mcgowan (Committee Member)
Melanie Myers, Ph.D. (Committee Member)
48 p.

Recommended Citations

Citations

  • Pervola, J. (2018). Adolescents Share their Views: A Qualitative Analysis of Adolescents' Preferences for Learning Genomic Sequencing Results [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1522418491824581

    APA Style (7th edition)

  • Pervola, Josie. Adolescents Share their Views: A Qualitative Analysis of Adolescents' Preferences for Learning Genomic Sequencing Results. 2018. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin1522418491824581.

    MLA Style (8th edition)

  • Pervola, Josie. "Adolescents Share their Views: A Qualitative Analysis of Adolescents' Preferences for Learning Genomic Sequencing Results." Master's thesis, University of Cincinnati, 2018. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1522418491824581

    Chicago Manual of Style (17th edition)