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Appears in Collections:Faculty of Health Sciences and Sport Journal Articles
Peer Review Status: Refereed
Title: How does genetic risk information for Lynch syndrome translate to risk management behaviours?
Author(s): Steel, Emma
Robbins, Andrew
Jenkins, Mark
Flander, Louisa
Gaff, Clara
Keogh, Louise
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Keywords: Lynch syndrome
Predictive genetic testing
Patient-clinician communication
Screening colonoscopy
Issue Date: 5-Jan-2017
Citation: Steel E, Robbins A, Jenkins M, Flander L, Gaff C & Keogh L (2017) How does genetic risk information for Lynch syndrome translate to risk management behaviours?, Hereditary Cancer in Clinical Practice, 15 (1), Art. No.: 1.
Abstract: Background  There is limited research on why some individuals who have undergone predictive genetic testing for Lynch syndrome do not adhere to screening recommendations. This study aimed to explore qualitatively how Lynch syndrome non-carriers and carriers translate genetic risk information and advice to decisions about risk managment behaviours in the Australian healthcare system.  Methods  Participants of the Australasian Colorectal Cancer Family Registry who had undergone predictive genetic testing for Lynch syndrome were interviewed on their risk management behaviours. Transcripts were analysed thematically using a comparative coding analysis.  Results  Thirty-three people were interviewed. Of the non-carriers (n = 16), 2 reported having apparently unnecessary colonoscopies, and 6 were unsure about what population-based colorectal cancer screening entails. Of the carriers (n = 17), 2 reported they had not had regular colonoscopies, and spoke about their discomfort with the screening process and a lack of faith in the procedure’s ability to reduce their risk of developing colorectal cancer. Of the female carriers (n = 9), 2 could not recall being informed about the associated risk of gynaecological cancers.  Conclusion  Non-carriers and female carriers of Lynch syndrome could benefit from further clarity and advice about appropriate risk management options. For those carriers who did not adhere to colonoscopy screening, a lack of faith in both genetic test results and screening were evident. It is essential that consistent advice is offered to both carriers and non-carriers of Lynch syndrome.
DOI Link: 10.1186/s13053-016-0061-6
Rights: © The Author(s). 2017 This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (, which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( applies to the data made available in this article, unless otherwise stated.

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