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

Kelly A MatulaAmy A BlumlingMelanie F MyersMichelle L McGowanEllen A Lipstein
Published in: Journal of empirical research on human research ethics : JERHRE (2023)
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.
Keyphrases
  • decision making
  • young adults
  • physical activity
  • mental health
  • copy number
  • gene expression