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Discussions about predictive genetic testing for Lynch syndrome: the role of health professionals and families in decisions to decline

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Abstract

Unaffected relatives of individuals with Lynch syndrome can be offered predictive genetic testing to guide surveillance recommendations. The decision-making process of those who decline testing, particularly those who do not attend a clinical genetics service, is poorly understood. We have addressed this gap by interviewing 33 individuals from Lynch syndrome mutation-carrying families, unaffected by cancer, who declined predictive genetic testing. Here, we analyse the data provided by 20 participants who unequivocally declined testing. Those who indicated they did not have enough information to make a decision or intended to undergo testing in the future were excluded. Analysis revealed that few decliners discussed their decision with general practitioners or genetic counsellors. Family members were commonly involved to varying degrees, with participants either (1) making group decisions with family members, (2) feeling persuaded by family members to either accept or decline testing, (3) discussing the test but making their own decision. A minority did not discuss testing with family members while making their decision. This research reveals the health communication activities of an understudied group, those declining predictive testing, and indicates that for many, health professionals play a minor role in the decision compared to family.

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Acknowledgements

This work was supported by the Victorian Cancer Agency (#EO109-33), National Cancer Institute, National Institutes of Health (RFA #CA-95-011), and through cooperative agreements with the Australasian Colorectal Cancer Family Registry (U01 CA097735). Findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the National Cancer Institute. We acknowledge the data collection conducted by Alison Rutstein and Heather Niven, and thank the participants for sharing their experiences.

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Authors and Affiliations

  1. Centre for Health Equity, Melbourne School of Population and Global Health, The University of Melbourne, 207 Bouverie St, Carlton, Melbourne, VIC, 3010, Australia

    Anaita Kanga-Parabia & Louise A. Keogh

  2. Departments of Paediatrics and Medicine, The University of Melbourne, Melbourne, Australia

    Clara Gaff

  3. Walter and Eliza Hall Institute, Melbourne, Australia

    Clara Gaff

  4. Centre for Epidemiology and Biostatistics, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, Australia

    Louisa Flander & Mark Jenkins

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  1. Anaita Kanga-Parabia
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  2. Clara Gaff
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  4. Mark Jenkins
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  5. Louise A. Keogh
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Correspondence to Louise A. Keogh.

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Kanga-Parabia, A., Gaff, C., Flander, L. et al. Discussions about predictive genetic testing for Lynch syndrome: the role of health professionals and families in decisions to decline. Familial Cancer 17, 547–555 (2018). https://doi.org/10.1007/s10689-018-0078-2

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