Mitochondrial donation, patient engagement and narratives of hope

Dados Bibliográficos

ID2249333
AutoresCathy Herbrand (0000-0001-9241-577X, Centre for Reproduction Research De Montfort University Leicester UK, autor correspondente), Rebecca Dimond (0000-0003-1974-7289, School of Social Sciences Cardiff University Cardiff UK)
Ano2018
Volume40
Fascículo4
Páginas623-638
Data de publicação2018-05-01
Peer ReviewedSim
Open AccessSim
TipoARTICLE
PeriódicoSociology of Health & Illness (JOURNAL)
Identificadores do periódicoISSN: 0141-9889 • E-ISSN: 1467-9566
EditoraWiley (PUBLISHER • GB)
DOI10.1111/1467-9566.12631
PMID29235132
OpenAlexW2751040216
IdiomaEN
Citações recebidas12
Referências citadas29

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

Community engagement · Donation · Narrative · Narrative review · Perception · Political science · Psychotherapist · Public engagement · Public relations · Sociology · Biomedical Ethics and Regulation · Gender Studies · Law · Medicine · Organ Donation and Transplantation · Psychology · Reproductive Health and Technologies · Social Psychology