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“It’s all very well reading the letters in the genome, but it’s a long way to being able to write”: Men’s interpretations of undergoing genetic profiling to determine future risk of prostate cancer

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Abstract

A family history of prostate cancer (PC) is one of the main risk factors for the disease. A number of common single nucleotide polymorphisms (SNPs) that confer small but cumulatively substantial risks of PC have been identified, opening the possibility for the use of SNPs in PC risk stratification for targeted screening and prevention in the future. The objective of this study was to explore the psychosocial impact of receiving information about genetic risk of PC. The participants were men who had a family history of PC and were enrolled in a screening study providing research genetic profiling alongside screening for PC. A combination of questionnaires and in-depth interviews were used. Questionnaires were completed by men at two time points: both before and after joining the study and going through the genetic profiling process. The interviews were completed after all study process were complete and were analysed using a framework analysis. In total 95 men completed both questionnaires and 26 men were interviewed. A number of issues facing men at risk of PC were identified. The results fell into two main categories: personal relevance and societal relevance. The strength of men’s innate beliefs about their risk, shaped by genetic and environmental assumptions, outweigh the information provided by genetic testing. Men felt genetic profile results would have future use for accessing prostate screening, being aware of symptoms and in communicating with others. The findings reinforce the importance of providing contextual information alongside genetic profiling test results, and emphasises the importance of the counselling process in providing genetic risk information. This research raises some key issues to facilitate clinical practice and future research related to the use of genetic profiling to determine risk of PC and other diseases.

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Acknowledgments

We thank all of the participants and families who took part in this research and to Dr Theresa Wiseman for her comments on this manuscript. This work was completed as part of a PhD project (EKB) at the University of Nottingham. KC and ER supervised this research. EKB is funded by The Royal Marsden NHS Foundation Trust and Cancer Research UK, grant number C5047/A3354 (awarded to RE: PI of Profile study). We acknowledge support from the National Institute for Health Research (NIHR) to the Biomedical Research Centre at The Institute of Cancer Research and Royal Marsden Foundation NHS Trust. EC was supported by a European Society of Medical Oncology Clinical Research Fellowship. ER is funded by the NIHR as part of the Collaboration for Leadership in Applied Health Research and Care—East Midlands (NIHR CLAHRC EM) and NIHR MindTech Health Technology Cooperative. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

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Authors and Affiliations

  1. Cancer Genetics Unit and Academic Urology Unit, Royal Marsden NHS Foundation Trust, Downs Road, Sutton, Surrey, London, SM2 5PT, UK

    Elizabeth K. Bancroft, Audrey Ardern-Jones, Natalie Taylor & Rosalind A. Eeles

  2. Oncogenetics Team, Institute of Cancer Research, London, UK

    Elizabeth K. Bancroft, Elena Castro, Clare Moynihan, Elizabeth Page, Natalie Taylor & Rosalind A. Eeles

  3. Centre for Health Innovation, Leadership and Learning, Nottingham University Business School, Nottingham, UK

    Emma Rowley

  4. School of Health Sciences, University of Nottingham, Nottingham, UK

    Karen Cox

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  1. Elizabeth K. Bancroft
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Correspondence to Elizabeth K. Bancroft.

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Bancroft, E.K., Castro, E., Ardern-Jones, A. et al. “It’s all very well reading the letters in the genome, but it’s a long way to being able to write”: Men’s interpretations of undergoing genetic profiling to determine future risk of prostate cancer. Familial Cancer 13, 625–635 (2014). https://doi.org/10.1007/s10689-014-9734-3

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