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A framework for youth-friendly genetic counseling.

Mary-Anne Young1,2, Kate Thompson3,4, Jeremy Lewin3,5,6

  • 1Kinghorn Centre for Clinical Genomics, Garvan Institute of Medical Research, 370 Victoria St Darlinghurst, Sydney, NSW, 2010, Australia. m.young@garvan.org.au.

Journal of Community Genetics
|November 7, 2019
PubMed
Summary

Genetic counseling presents unique challenges for adolescents and young adults. This study developed an evidence-based, youth-friendly framework to improve genetic risk communication and support for young people and their families.

Keywords:
Adolescent healthGenetic counselingGenetic healthModels of careYouth-friendly healthcare

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Area of Science:

  • Genetics
  • Adolescent Health
  • Healthcare Delivery

Background:

  • Young people face distinct challenges in healthcare and genetic risk assessment.
  • Genetic counseling requires tailored approaches for adolescents and young adults (AYA) due to engagement and communication complexities.
  • Existing genetic counseling practices often do not adequately address the specific needs of young individuals and their families.

Purpose of the Study:

  • To develop an evidence-based framework for youth-friendly genetic counseling.
  • To enhance the delivery of care and support for young people and families navigating genetic risk.
  • To address the identified challenges in genetic counseling for the adolescent and young adult population.

Main Methods:

  • A literature review was conducted to identify best practices and evidence.
  • Expert input was gathered from genetic counselors, AYA oncology specialists, and adolescent health professionals.
  • Consumer and expert feedback informed the consensus-based development of the framework through multiple stages.

Main Results:

  • A consensus-based framework for youth-friendly genetic counseling was successfully developed.
  • The framework is supported by a comprehensive evidence base and incorporates expert and consumer insights.
  • The framework aims to guide the delivery of specialized genetic services for young people.

Conclusions:

  • A youth-friendly genetic counseling framework is essential for improving care for adolescents and young adults.
  • This framework provides a structured approach to address the unique psychosocial and communication needs of young people in genetic counseling.
  • Implementation of this framework can enhance the genetic counseling experience and outcomes for young individuals and their families facing genetic risks.