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Parents' preferences for receiving and discussing prognostic genetic information regarding their children's neurodevelopmental condition: A qualitative study.

Erin TurbittMeg BourneAlison McEwenDavid J Amor
Published in: Developmental medicine and child neurology (2023)
Parents had mixed preferences and motivations for acquiring prognostic genetic information about their child, contrasting evidence in other contexts such as cancer where parents typically have minimal tolerance of uncertainty. Health professionals should consider strength-based framing of prognostic information gained from current and emerging technologies when returning results to families.
Keyphrases
  • health information
  • genome wide
  • young adults
  • copy number
  • mental health
  • decision making
  • squamous cell
  • social media
  • congenital heart disease
  • lymph node metastasis