Campaigning: Contested Meanings, Patient-Families, and Last Minute Labours

Chapter

Abstract

The process of campaigning lasted several years, although the intensity increased as the parliamentary votes drew near. Here we identify a set of campaign strategies and central issues undergoing contestation, specifically the development of an interpretative package used to render the techniques knowable in particular forms through particular terminologies. We also consider the compelling and emotive nature of patient-family experiences. While those in the for-cluster harnessed the political capital of patient narratives for maintaining media, policy, and parliamentarians’ attention, they also experienced a burden of risk under the media glare, and the associated emotional and institutional labour of offering protection. We also discuss how against-cluster campaigners responded to face-to-face encounters with patient-families. Finally, we focus on the promissory, ethical and bureaucratic labour of last minute campaigning.

Keywords

Metaphors Campaigning Embodied suffering Mitochondrial donation Emotional labour 

References

  1. Allen, V. (2015, February 2). Why I want a 3-parent baby, by mother of girl with rare deadly disease: Woman calls on MPs to allow technique ‘that could help so many others’. http://www.dailymail.co.uk/news/article-2935670/Why-want-3-parent-baby-mother-girl-rare-deadly-disease-Woman-calls-MPs-allow-technique-help-others.html#ixzz4tnaVW7UX [accessed 20 Oct 2017].
  2. BMA. (2015, February 2). For and against mitochondrial donation. The Times. https://www.thetimes.co.uk/article/for-and-against-mitochondrial-donation-8vjnc7bs2kw [accessed 31 Oct 2017].
  3. Center for Genetics and Society. (2015, January 29). An open letter to UK members of parliament as vote on “mitochondrial donation” approaches. https://www.geneticsandsociety.org/press-statement/open-letter-uk-members-parliament-vote-mitochondrial-donation-approaches?id=8338 [accessed 20 Oct 2017].
  4. Department of Health (DoH). (2014). Mitochondrial donation: Government response to the consultation on draft regulations to permit the use of new treatment techniques to prevent the transmission of a serious mitochondrial disease from mother to child. Department of Health. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/332881/Consultation_response.pdf.
  5. Dimond, R., & Stephens, N. (2017). Three persons, three genetic contributors, three parents: Mitochondrial donation, genetic parenting and the immutable grammar of the ‘three x x’. Health.  https://doi.org/10.1177/1363459316689380.
  6. Driscoll, M. (2015, February 1). Why we want the first three-parent baby. The Sunday Times. http://www.thesundaytimes.co.uk/sto/news/focus/article1514067.ece [accessed 27 May 2016].
  7. Epstein, S. (1996). Impure science: AIDS, activism, and the politics of knowledge. Berkeley: University of California Press. Google Scholar
  8. Gamson, W. A., & Modigliani, A. (1989). Media discourse and public opinion on nuclear power: A constructionist approach. American Journal of Sociology, 95(1), 1–37.CrossRefGoogle Scholar
  9. Haran, J., Kitzinger, J., McNeil, M., & O’Riordan, K. (2008). Human cloning in the media: From science fiction to science practice. London: Routledge.Google Scholar
  10. Herbrand, C., & Dimond, R. (2017). Mitochondrial donation, patient engagement and narratives of hope. Sociology of Health and Illnesshttps://doi.org/10.1111/1467-9566.12631.
  11. Highfield, R. (2005, September 9). Designer babies to wipe out diseases approved. The Telegraph. https://www.telegraph.co.uk/news/uknews/1497972/Designer-babies-to-wipe-out-diseases-approved.html [accessed 4 Mar 2018].
  12. Knapton, S. (2015, February 1). Three-parent baby technique no more sinister than blood transfusion, says Robert Winston. The Telegraph. http://www.telegraph.co.uk/news/science/science-news/11383004/Three-parent-baby-technique-no-more-sinister-than-blood-transfusion-says-Robert-Winston.html [accessed 30 Oct 2017].
  13. Langstrup, H. (2011). Interpellating patients as users. Patient associations and the project-ness of stem cell research. Science, Technology, & Human Values, 36(4), 573–594.Google Scholar
  14. McVeigh, K., & Sample, I. (2014, October 22). Parents of disabled child appeal to MPs to allow ‘three-person embryos’. The Guardian. https://www.theguardian.com/science/2014/oct/22/parents-three-person-embryos-mitochondrial-disease [accessed 20 Oct 2017].
  15. Mikolášik, M., Schaffhauser, J. L., Stier, D., Morgano, L., et al. (2015). Open letter on mitochondrial donation regulations. http://www.edwardleigh.org.uk/2015/meps-letter/ [accessed 29 Nov 2017].
  16. Novas, C. (2006). The political economy of hope: Patients’ organizations, science and biovalue. BioSocieties, 1, 289–305.CrossRefGoogle Scholar
  17. Sulston, J., Deech, B., Warnock, B., & Savill, J. (2015, January 28). Three person IVF. Letter to The Times. https://www.thetimes.co.uk/article/three-person-ivf-73wgwt096z2 [accessed 20 Oct 2017].
  18. Sunderland Echo. (2010, April 15). DNA research gives mums hope. http://www.sunderlandecho.com/news/dna-research-gives-mums-hope-1-1109636 [accessed 4 Nov 2017].
  19. Turkmendag, I. (2018). It is just a “battery”: “Right” to know in mitochondrial replacement. Science, Technology, & Human Values, 43(1), 56–85.Google Scholar
  20. von Radowitz, J. (2010, April 14). DNA breakthrough may prevent inherited diseases. The Independent. http://www.independent.co.uk/news/science/dna-breakthrough-may-prevent-inherited-diseases-1944926.html [accessed 21 Nov 2017].
  21. Watts, H. (2015, January 31). Three person IVF. The Times. https://www.thetimes.co.uk/article/three-person-ivf-rxxst78b6r6 [accessed 30 Oct 2017].

Copyright information

© The Author(s) 2018

Authors and Affiliations

  1. 1.School of Social SciencesCardiff UniversityCardiffUK
  2. 2.Social and Political SciencesBrunel University LondonLondonUK

Personalised recommendations