Journal article

Outcomes of a randomised controlled trial of a complex genetic counselling intervention to improve family communication

Jan Hodgson, Sylvia Metcalfe, Clara Gaff, Susan Donath, Martin B Delatycki, Ingrid Winship, Loane Skene, MaryAnne Aitken, Jane Halliday

EUROPEAN JOURNAL OF HUMAN GENETICS | NATURE PUBLISHING GROUP | Published : 2016

Abstract

When an inherited genetic condition is diagnosed in an individual it has implications for other family members. Privacy legislation and ethical considerations can restrict health professionals from communicating directly with other family members, and so it is frequently the responsibility of the first person in a family to receive the diagnosis (the proband) to share this news. Communication of genetic information is challenging and many at-risk family members remain unaware of important information that may be relevant to their or their children's health. We conducted a randomised controlled trial in six public hospitals to assess whether a specifically designed telephone counselling inter..

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Grants

Awarded by National Health and Medical Research Council (NHMRC)


Funding Acknowledgements

We are grateful to all of the research participants and the genetic counsellors for their role in this project. We thank Hannah Brown, Veronica Collins, Denise Goodwin, Phuong Nguyen, Jean Paul and Loren Plunkett for their roles within the project team. This study was funded by grant from the National Health and Medical Research Council (NHMRC), Project No 491214. This research was supported by the Victorian Government's Operational Infrastructure Support Program.