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Choosing not to undergo predictive genetic testing for hereditary colorectal cancer syndromes: expanding our understanding of decliners and declining

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Abstract

While medical research continues to investigate the genetic basis of cancer, and personalised prevention gains momentum, little research has been conducted with the individuals who decline predictive genetic testing for cancer. We recruited individuals who had been offered genetic testing for Lynch syndrome or bi-allelic MUTYH mutations due to their participation in a large, population-based, Australia-wide colorectal cancer study. Thirty-three individuals in mutation-carrying families, unaffected by cancer, who had actively or passively declined testing at one of four decision-making points, took part in a qualitative interview about their decision. Data analysis revealed a typology of ‘decliners’: (1) uninformed about genetic testing; (2) a weak intention to undergo genetic testing; (3) conditionally declining; and (4) unconditionally declining testing. In this population we found substantial barriers to achieving the benefits promised by predictive genetic testing; a lack of knowledge of the availability of genetic testing; a lack of trust in genetic test information; a desire to see a stronger benefit from genetic testing before proceeding; and a sense that there may be more negative than positive outcomes from genetic testing. These discourses must be addressed if medical research on the genetic basis of cancer continues to be funded, and personalised prevention of cancer continues to be recommended by experts.

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Acknowledgement

This work was supported by the Victorian Cancer Agency under #EO109-33, National Cancer Institute, National Institutes of Health under 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.

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Authors and Affiliations

  1. Gender and Women’s Health Unit, Centre for Health Equity, Melbourne School of Population and Global health, The University of Melbourne, 207 Bouverie St, Carlton, Melbourne, VIC, 3010, Australia

    Louise A. Keogh

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

    Heather Niven, Alison Rutstein, Louisa Flander & Mark Jenkins

  3. Walter and Eliza Hall Institute, Melbourne, VIC, Australia

    Clara Gaff

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  1. Louise A. Keogh
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  2. Heather Niven
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  3. Alison Rutstein
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  4. Louisa Flander
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  5. Clara Gaff
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  6. Mark Jenkins
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Correspondence to Louise A. Keogh.

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Louise A. Keogh, Heather Niven, Alison Rutstein, Louisa Flander, Clara Gaff, and Mark Jenkins declares that they have no conflict of interest.

Human and animal rights and Informed consent

All procedures followed were in accordance with ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.

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Keogh, L.A., Niven, H., Rutstein, A. et al. Choosing not to undergo predictive genetic testing for hereditary colorectal cancer syndromes: expanding our understanding of decliners and declining. J Behav Med 40, 583–594 (2017). https://doi.org/10.1007/s10865-016-9820-0

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  • DOI: https://doi.org/10.1007/s10865-016-9820-0

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