Promissory Strategies of Personalisation in the Commercialisation of Genomic Knowledge

Authors

  • Michael Arribas-Ayllon Cardiff University
  • Srikant Sarangi Cardiff University
  • Angus Clarke Cardiff University

DOI:

https://doi.org/10.1558/cam.v8i1.53

Keywords:

websites, Direct-To-Consumer Genetic Testing, Neo-liberalism, Translational Medicine, Rhetorical Discourse Analysis

Abstract

As part of personalised medicine emerging from the human genomics revolution, many websites now offer direct-to-consumer genetic testing. Here, we examine three personal genomics companies – Navigenics, deCODEme and 23andMe – each of which represents contrasting registers of ‘personalisation’. We identify three distinctive registers in these websites: a paternalistic (medical) register; a translational (scientific) register and a democratic (consumerist) register. We explore in detail the rhetorical and discourse devices employed in these websites to assess how personalised healthcare is promised to the public. Promising information that will empower prevention of common complex diseases and ensure better quality of life is conflated with promising greater access to personal information. The presence and absence of scientific legitimacy is related to concerns about accuracy and validity on the one side, and fears of paternalism and elitism on the other. Nevertheless, a common strategy uniting these different styles of personalisation is consumer empowerment. Finally, we consider the tension between the drive of translational medicine to make human genomic research practically relevant, and the intrinsic uncertainties of scientific research and show how, in the commercial domain, future risks are transformed into discourses of promise by concealing these uncertainties

Author Biographies

Michael Arribas-Ayllon, Cardiff University

Michael Arribas-Ayllon is lecturer in Cognitive and Biological Psychology at Cardiff University. Over the last five years, he has worked on the social and ethical aspects of genomics. His research interests include genetic testing, genetic counselling, public understandings of science, the politics of personalised medicine and the history of psychiatric genetics.

Srikant Sarangi, Cardiff University

Srikant Sarangi is Professor of Language and Communication and Director of the Health Communication Research Centre at Cardiff University. He is also Professor in Language and Communication at Norwegian University of Science and Technology (NTNU), Trondheim (Norway), Honorary Professor, Faculty of Humanities, Aalborg University (Denmark) and Honorary Professor, Centre for the Humanities and Medicine, The University of Hong Kong. His main research interests are in genetic counselling, primary care consultation, HIV/AIDS and telemedicine. He is the editor of Text & Talk as well as the founding editor of Communication & Medicine and co-editor of Journal of Applied Linguistics and Professional Practice.

Angus Clarke, Cardiff University

Angus Clarke is Professor of Clinical Genetics in Cardiff University and a practising clinical geneticist. He trained in paediatrics and then developed research interests in genetics, including Rett syndrome, ectodermal dysplasia and neuromuscular disease. He has been based in Cardiff for more than 20 years, establishing the Cardiff MSc course in Genetic Counselling and developing interests in the social, ethical and communication aspects of medical genetics.

Published

2011-11-29

How to Cite

Arribas-Ayllon, M., Sarangi, S., & Clarke, A. (2011). Promissory Strategies of Personalisation in the Commercialisation of Genomic Knowledge. Communication and Medicine, 8(1), 53–66. https://doi.org/10.1558/cam.v8i1.53

Issue

Section

Articles