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Pediatric DTC Genetic Testing for Adult-Onset Inherited Cancer Risk: The Perspectives of High-Risk Parents.

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Few high-risk parents use direct-to-consumer (DTC) genetic testing for their children, preferring clinical options. However, some parents believe DTC testing should remain available for identifying hereditary cancer risks in youth.

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Area of Science:

  • Genetics
  • Pediatric Health
  • Bioethics

Background:

  • Guidelines discourage pediatric genetic testing for adult-onset hereditary cancer risk.
  • Direct-to-consumer (DTC) genetic testing is accessible to parents for their children.
  • High-risk parents' perspectives on pediatric genetic testing are not well understood.

Purpose of the Study:

  • To examine high-risk parents' perspectives on pediatric genetic testing, particularly DTC testing.
  • To understand parents' motivations, perceived risks and benefits, and decision-making involvement regarding pediatric genetic testing.

Main Methods:

  • Qualitative study involving interviews with 30 parents of children aged 10-21.
  • Parents carried pathogenic variants in cancer-causing genes detectable by DTC tests.
  • Inductive analysis of interview data to identify prominent themes.

Main Results:

  • Few parents (17%) reported their children underwent genetic testing; most (73%) endorsed pediatric genetic testing for general health.
  • Parents preferred clinical testing (53%) but some (40%) supported DTC availability for cancer risk identification.
  • Child's maturity, interest, and anticipated response were key decision-making factors.

Conclusions:

  • High-risk parents rarely use DTC genetic testing for children, preferring clinical testing.
  • Some parents advocate for continued DTC availability for hereditary cancer risk assessment in youth.
  • Clinicians should discuss pediatric genetic testing risks/benefits with parents to ensure informed decisions.