DOI: 10.1177/15562646231190826 ISSN: 1556-2646

Adolescents’ and Parents’ Perspectives on a Novel Decision-Making Process for Return of Results in Genomic Research

Kelly A. Matula, Amy A. Blumling, Melanie F. Myers, Michelle L. McGowan, Ellen A. Lipstein
  • Communication
  • Education
  • Social Psychology

To understand whether they found a two-step decision process helpful and why, adolescent-parent dyads participating in a study investigating return of genomic testing results were asked about their decision-making experience. Responses were qualitatively coded and analyzed using thematic analysis. Adolescents and parents found both joint and independent decision-making stages helpful. Regarding independent decision-making, adolescents appreciated exercising independence, while parents valued both adolescent and parental independence. Joint decision-making allowed each to hear the other's viewpoints. Some found joint decision-making irrelevant but recognized it might help others. Overall, adolescents and parents had similar reasons for finding the two-step decision-making process helpful. Our findings support using such a process for engaging parents and adolescents in challenging research and clinical decisions.

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