Affective Economies and the Politics of Saving Babies’ Lives

Buchbinder, Mara; Timmermans, Stefan

doi:10.1215/08992363-2346268

Cited by 14 publications

(6 citation statements)

References 38 publications

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“…Second, mitochondrial donation was positioned as a technology that would prevent suffering, and the suffering of children in particular. As Buchbinder and Timmermans (2014) have highlighted, the mobilisation of suffering can become an important part of political projects because of the emotional response it gains from policymakers. Accounts which feature the 'desperateness' of those who could potentially benefit from scientific progress have persuasive appeal (Franklin 1997).…”

Section: Introductionmentioning

confidence: 99%

Mitochondrial donation, patient engagement and narratives of hope

Herbrand

Dimond

2017

Sociology Health & Illness

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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.

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Section: Introductionmentioning

confidence: 99%

Mitochondrial donation, patient engagement and narratives of hope

Herbrand

Dimond

2017

Sociology Health & Illness

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“…There are few studies with which to compare this study as the literature concerning NST is largely case studies of benefits of genetic NST. For example, a family who consented to have their newborn participate in NST discovered that the newborn was positive for 3-methylcrotomly-coenzyme A carboxylase deficiency which would have resulted in premature death or severe mental/physical deficiencies if not for the early diagnosis and intervention [ 12 ].…”

Section: Resultsmentioning

confidence: 99%

Newborn genetic testing in the United States and access to needed specialist care, National Survey of Children’s Health, 2020: A cross-sectional study

Wiener

2022

PLoS ONE

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Newborn screening tests (NST) are important public health procedures with potential to improve quality of life, and decrease morbidity/mortality by identifying metabolic, genetic, enzymatic, and endocrinological diseases/conditions. In the United States (U.S.), Hawaii conducts the fewest NST (28) and Connecticut conducts the most (75). The purpose of this research is to determine if difficulty receiving specialty care for children with genetic diseases is associated with NST determination of the genetic condition. The research hypothesis is that parents/guardians of children with determination of genetic disease from NST are more likely to report no/slight difficulty accessing specialty care versus parents/guardians of children with genetic diseases whose determination was other than NST. This study has a cross-sectional design with National Survey of Children’s Health, 2020 data. Data were analyzed for frequency, Rao Scott Chi square, and logistic regression analyses. Of 833 children with genetic diseases, most parents/guardians reported no/slight difficulty in receiving needed specialty care; however, children whose determination of a genetic condition was other than NST were 4.82 times as likely (95%CI: 1.66, 14.02; p = 0.0040) to have difficulty. In analysis adjusted for sex, race, age, premature birth, and birthweight, the adjusted odds ratio was 6.71 (95% CI:1.91, 23.60 p = 0.0031). Parents/guardians of children screened with a positive NST reported less difficulty in receiving needed specialist care as compared with reports of parents/guardians of children with genetic conditions who were diagnosed later. The implication is there would be greater population level benefits realized in the U.S. if NST were expanded in states conducting minimal testing.

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“…This has been described by Fassin (2009) as a form of 'biolegitimacy', where rights are increasingly legitimised in terms of the 'suffering body'. Building on work highlighting how 'affective economies' have become key strategies for political action in diverse healthcare spheres and specifically the treatment of rare diseases (Buchbinder and Timmermans 2014), we examine how multiple and variable claims about the value or price of life are mobilised as part of the 'governing work' (Feldman and Ticktin 2010) that constitutes the terrain of judicialisation and high-cost drugs for rare diseases in Brazil. We illuminate the complex economic and power relations that have placed patients and their families in situations of profound uncertainty and instability, whilst also revealing the dangers of commodifying health that ultimately weaken the public health assistance offered by the Brazilian state to its citizens.…”

Section: Waleska Aureliano and Sahra Gibbonmentioning

confidence: 99%

“…While illuminating how the ethical value and category of 'life' gains traction across different spheres of social action in the context of contestation and debates concerning judicalisation and rare disease, this chapter has also aimed to further contextualise how we might understand the way that particular forms of activism and inequalities inform these developments. Whilst an affective discourse of life and value in pursuing access and rights to medication is prominent, these do not, as Buchbinder and Timmermans (2014) suggest, serve to 'obscure' fiscal costs and opportunities of public health programmes; rather, in Brazil, they are brought into sharp relief. We see very clearly in the Brazilian context the complex 'paradoxes and prospects of citizenship' (Petryna and Follis 2015) or what Biehl describes as the 'ambiguous political subjectivities ' (2015) at stake in the judicialisation of health in relation to rare disease.…”

Section: Concluding Comments and Future Developmentsmentioning

confidence: 99%

Critical Medical Anthropology: Perspectives in and from Latin America

Tym

2021

Journal of Iberian and Latin American Research

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is a Wellcome Trust Senior Research Fellow based in the Institute for Global Health at UCL. Jennie has carried out extensive research in Mexico and the UK on reproductive and maternal health and has worked for the past 10 years with indigenous Wixárika communities. She is also co-director of the UCL Centre for Gender and Global Health and teaches and writes about the political economy of gender and health.Sahra Gibbon is associate professor in the Medical Anthropology Department at UCL. She has carried out research in the UK, Cuba and Brazil examining developments in genomics, public health, activism, gender and identity. Her recent publications include (as co-editor) The Routledge Handbook of Genomics, Health and Society (2018) and she is editor, with Jennie Gamlin, of the UCL Press book series Embodying Inequalities.

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Affective Economies and the Politics of Saving Babies’ Lives

Cited by 14 publications

References 38 publications

Mitochondrial donation, patient engagement and narratives of hope

Mitochondrial donation, patient engagement and narratives of hope

Newborn genetic testing in the United States and access to needed specialist care, National Survey of Children’s Health, 2020: A cross-sectional study

Critical Medical Anthropology: Perspectives in and from Latin America

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