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A framework for youth-friendly genetic counseling

  • Mary-Anne YoungEmail author
  • Kate Thompson
  • Jeremy Lewin
  • Lucy Holland
Original Article

Abstract

Young people represent a unique cohort in the context of both healthcare and genetic risk. Genetic counselors have long recognized and documented the challenges of working with young people and their families compared with working with older adults. Challenges for health professionals include engagement with the young person, communication, developmentally appropriate psychosocial assessment, and working with the young person and their family. Likewise, young people also report experiencing challenges within the genetic counseling process. In response to these challenges, and increasing numbers of young people presenting for genetic testing, genetic counselors at the Parkville Familial Cancer Centre (Peter MacCallum Cancer Centre, Australia) formed a collaboration with the ONTrac at Peter Mac Victorian Adolescent & Young Adult Cancer Service. Consisting of a multidisciplinary expert panel who provide care to young people with cancer and their families, the collaboration identified the need to develop an evidence-based framework to ensure the delivery of youth-friendly care and support for young people and their families facing genetic risk. To guide this work, a working party comprising of experts in genetic counseling, adolescent and young adult (AYA) oncology, adolescent health, clinical ethics, and clinical research was established. A literature review was undertaken and based on expert and consumer input and feedback, a consensus-based framework for youth-friendly genetic counseling was developed over several stages. This paper describes the evidence base supporting the development of this framework, the process of development, and the resulting framework of youth-friendly genetic counseling.

Keywords

Genetic health Genetic counseling Adolescent health Youth-friendly healthcare Models of care 

Notes

Acknowledgments

The authors wish to acknowledge the contribution of working party members in this work including Ms. Shauna Buscombe, Ms. Lisette Curnow, Professor Martin Delatycki, Dr. Rony Duncan, Dr. Anne-Maree Duncan, Professor Lynn Gillam, Mr. Ivan Macciocca, Dr. Cara Mand, and Professor Susan Sawyer.

Funding information

This work was supported by a Peter MacCallum Cancer Centre Foundation grant. The ONTrac at Peter Mac Victorian Adolescent & Young Adult Cancer Service is a Victorian Government funded initiative.

Compliance with ethical standards

This article does not contain any studies with human participants or animals performed by any of the authors.

Conflict of interest

The authors declare that they have no conflicts of interest.

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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Kinghorn Centre for Clinical GenomicsGarvan Institute of Medical ResearchSydneyAustralia
  2. 2.Parkville Familial Cancer CentreMelbourneAustralia
  3. 3.ONTrac at Peter Mac Victorian Adolescent and Young Adult Cancer ServiceMelbourneAustralia
  4. 4.The University of MelbourneMelbourneAustralia
  5. 5.Division of Cancer MedicinePeter MacCallum Cancer CentreMelbourneAustralia
  6. 6.The Sir Peter MacCallum Department of OncologyThe University of MelbourneMelbourneAustralia
  7. 7.Queensland University of TechnologyBrisbaneAustralia
  8. 8.The University of NewcastleNewcastleAustralia

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