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Psychosocial Implications of Precision Medicine

Project Overview

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Genetic testing and precision medicine have the potential to transform childhood chronic illness diagnosis and management. To address the psychosocial impact on children and families, Luminesce Alliance funded a Psychosocial Implications project aimed at understanding the potential psychological and social consequences of genetic testing and precision medicine.  The insights gained led to the creation of resources, empowering healthcare providers to offer psychosocial support and assisting families in making decisions about precision medicine trial enrollment. This better understanding of family needs enables healthcare providers in New South Wales to confidently recommend precision medicine and genetic testing to their patients.

Collaborations

  • University of New South Wales School of Women’s and Children’s Health (Australia)
  • Hereditary Cancer Clinic, Prince of Wales Hospital Sydney (Australia)
  • Zero Childhood Cancer Group (Australia)
  • Children’s Cancer Institute (Australia)
  • Sydney Children’s Hospitals Network (Australia)
  • Li Fraumeni Syndrome Association (Australia)
  • ANZCHOG (Australian & New Zealand Children’s Haematology/Oncology Group)
  • SPHERE (Sydney Partnership for Health, Education, Research and Enterprise)
Summary

The pioneering Psychosocial Implications project assessed the experiences and expectations of patients, parents, and healthcare providers in precision medicine trials and genetic testing for pediatric illnesses, resulting in the development of tailored educational resources.

Lead Investigators

  • Claire_Wakefield@2x

    Professor Claire Wakefield

    Professor in the Discipline of Paediatrics, School of Women's and Children's Health, University of New South Wales Faculty of Medicine and Head, Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW

Team

  • Dr Kate Hetherington

    Clinical Psychologist and Post-Doctoral Research Fellow in the Behavioural Sciences Unit in the School of Women and Children’s Health, University of New South Wales

  • Brittany McGill

    Research Fellow, Behavioural Sciences Unit in the School of Women and Children’s Health, University of New South Wales

  • Ms Suzanne Nevin

    Clinical Research Assistant, Behavioural Sciences Unit in the School of Women and Children’s Health, University of New South Wales
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Acknowledgment of Country.

In the spirit of reconciliation, the Luminesce Alliance acknowledges the Traditional Custodians of country throughout Australia and their connections to land, sea and community.

We pay our respect to their elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.