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.
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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
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.
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Young, MA., Thompson, K., Lewin, J. et al. A framework for youth-friendly genetic counseling. J Community Genet 11, 161–170 (2020). https://doi.org/10.1007/s12687-019-00439-2
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DOI: https://doi.org/10.1007/s12687-019-00439-2