Mitochondrial donation, patient engagement and narratives of hope

Herbrand, Cathy and Dimond, Rebecca ORCID: https://orcid.org/0000-0003-1974-7289 2018. Mitochondrial donation, patient engagement and narratives of hope. Sociology of Health and Illness 40 (4) , pp. 623-638. 10.1111/1467-9566.12631

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Abstract

This article develops the sociology of hope and patient engagement by exploring how patients’ perceptions and actions are shaped by narratives of hope surrounding the clinical introduction of novel reproductive techniques. In 2015, after extensive public debates, the UK became the first country to legalise a mitochondrial donation technique aimed at preventing the transmission of inherited disorders. The article draws on the accounts of twenty-two women of reproductive age who are at risk of having a child with mitochondrial disease and would be the potential target of the technique. We explore the extent to which our participants engaged with the public debates and how they accounted for their support of mitochondrial donation. We show that while the majority of our participants were in favour of legalisation, they did not necessarily wish to use the technique themselves. We found that hope was multi-faceted, involving hope for self, hope for family and hope for society. We conclude by considering the implications of hope narratives for patients and families and the important but potentially limited role that patients can play as advocates for technology.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Social Sciences (Includes Criminology and Education)
Publisher:	Wiley: 12 months
ISSN:	0141-9889
Date of First Compliant Deposit:	30 August 2017
Date of Acceptance:	2 August 2017
Last Modified:	26 Nov 2024 23:45
URI:	https://orca.cardiff.ac.uk/id/eprint/104112

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