On the limits of genetic responsibility: Communication and consent for tumour testing for Lynch syndrome

Authors

  • Hannah Elizabeth Shipman Cardiff University
  • Michael Arribas-Allyon Cardiff University
  • Alexandra Murray University Hospital of Wales
  • Clara Louise Gaff Royal Melbourne Hospital

DOI:

https://doi.org/10.1558/cam.v10i3.225

Keywords:

Discourse, genetic responsibility, communication, Lynch Syndrome, tumour screening, colorectal cancer

Abstract

Testing cancers for mismatch repair (MMR) gene defects assists selection of families for genetic testing for cancer predisposing Lynch syndrome. Performing MMR tumour testing without consent is debated, though little empirical work has been undertaken. We address this by examining the significance of testing for those who have consented without prior genetic counselling, particularly their ‘accounts’ of testing via displays of knowledge and responsibility. Semi-structured interviews were conducted with participants recruited from a UK genetics service. Participants had difficulties in formulating the benefits of testing when consent was facilitated by a relative or by mail. Discourse analysis revealed that in the absence of specific or accurate understandings of tumour testing, participants displayed responsibility towards themselves and others by generalising and diminishing the implications of testing. Within the framework of ‘genetic responsibility’, MMR tumour testing seems less important in participants’ accounts compared to more definitive genetic testing. If facilitating genetic knowledge and responsibility are goals of genetic testing then developing appropriate consent procedures for MMR tumour testing is an important consideration. Further research is required to differentiate whether genetic counselling is a precondition for enacting genetic responsibility or whether intrinsic differences between types of testing make the concept less relevant.

Author Biographies

  • Hannah Elizabeth Shipman, Cardiff University
    Hannah Shipman is a research genetic counsellor at the School of Clinical Medicine at the University of Cambridge. She has recently completed her doctorate at Cardiff University. She is interested in the ethics of genetic and genomic testing, the discourse of healthcare encounters and patient experiences.
  • Michael Arribas-Allyon, Cardiff University
    Michael Arribas-Ayllon is a lecturer at the School of Social Sciences at Cardiff University. His research interests include the micropolitics of risk communication, professional ethics in genetic counselling and commercialisation of personal genomics. He is currently researching new and emerging technologies within psychiatric genetics, ICTs and neuroscience. He is the lead author of Genetic Testing: Accounts of Autonomy, Responsibility and Blame (Routledge, 2011).
  • Alexandra Murray, University Hospital of Wales
    Alexandra Murray is a Consultant Clinical Geneticist, working as the Clinical Lead for Cancer Genetics within the All Wales Medical Genetics Service in Cardiff. She is interested in the psychosocial implications of familial cancer syndromes and the evolving emphasis on personalised medicine in the oncology setting. She is also keen to increase patient engagement with cancer genetics service development and improvement projects.
  • Clara Louise Gaff, Royal Melbourne Hospital
    Clara Gaff is an experienced genetic counsellor. Her interests are in family communication of genetic information and the translation of new testing technology and evidence into genetic counselling practice. She co edited Family Communication about Genetics: Theory and Practice (Oxford University Press, 2010). She is currently working on the implementation of genomics into clinical practice in an Australian health and medical research precinct.

Published

2014-05-22

Issue

Section

Articles

How to Cite

Shipman, H. E., Arribas-Allyon, M., Murray, A., & Gaff, C. L. (2014). On the limits of genetic responsibility: Communication and consent for tumour testing for Lynch syndrome. Communication and Medicine, 10(3), 225-235. https://doi.org/10.1558/cam.v10i3.225

Most read articles by the same author(s)

1 2 3 4 5 6 7 8 9 10 > >>