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 intervention improved family communication about a new genetic diagnosis. Ninety-five probands/parents of probands were recruited from genetics clinics and randomised to the intervention or control group. The primary outcome measure was the difference between the proportion of at-risk relatives who contacted genetics services for information and/or genetic testing. Audit of the family genetic file after 18 months revealed that 25.6% of intervention group relatives compared with 20.9% of control group relatives made contact with genetic services (adjusted odds ratio (OR) 1.30, 95% confidence interval 0.70–2.42, P=0.40). Although no major difference was detected overall between the intervention and control groups, there was more contact in the intervention group where the genetic condition conferred a high risk to offspring (adjusted OR 24.0, 95% confidence interval 3.4–168.5, P=0.001). The increasing sophistication and scope of genetic testing makes it imperative for health professionals to consider additional ways of supporting families in communicating genetic information.
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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.
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The manuscript contains original material which is not under review elsewhere. The study received appropriate ethical review at all of the research sites.
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All authors have made a substantial contribution to the conception and design of the study and participated in regular steering committee meetings throughout the trial. J Hodgson and J Halliday co-authored the first draft of this paper and all of the authors participated in further drafting and editing.
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Hodgson, J., Metcalfe, S., Gaff, C. et al. Outcomes of a randomised controlled trial of a complex genetic counselling intervention to improve family communication. Eur J Hum Genet 24, 356–360 (2016). https://doi.org/10.1038/ejhg.2015.122
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DOI: https://doi.org/10.1038/ejhg.2015.122
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