The expansion of abnormality and the biomedical norm: Neonatal screening, prenatal diagnosis and cystic fibrosis in France

Vailly, Joëlle

doi:10.1016/j.socscimed.2008.02.010

Cited by 15 publications

(16 citation statements)

References 27 publications

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“…These discourses also informed present day analyses on how to think about what 'impairment' is and why concepts are ethically being 'unmade', such as for example, Chika questioning genetic impairment. We argue the theoretical disconnect of current paradigms of disability is because the nature of (bio) medicine has changed, in keeping with new ideas on genomics and where pathology is situated as more sophisticated but also diffuse, affecting everyone (Hacking, 2006;Vailly, 2008), foretelling a new genetic (dis)ableism.…”

Section: Discussionmentioning

confidence: 92%

Resignifying the sickle cell gene: Narratives of genetic risk, impairment and repair

2016

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Connecting theoretical discussion with empirical qualitative work, this article examines how sickle cell became a site of public health intervention in terms of 'racialised' risks. Historically, sickle cell became socio-politically allied to ideas of repair, in terms of the state improving the health of a neglected ethnic minority population. Yet, we elucidate how partial improvements in care and education arose alongside preventative public health screening efforts. Using qualitative research based in the United Kingdom, we show how a focus on collective efforts of repair can lie in tension with how services and individuals understand and negotiate antenatal screening. We illustrate how screening for sickle cell disorder calls into question narrative identity, undoing paradigms in which ethnicity, disablement and genetic impairment become framed. Research participants noted that rather than 'choices', it is 'risks' and their negotiation that are a part of discourses of modernity and the new genetics. Furthermore, while biomedical paradigms are rationally and ethically (de)constructed by participants, this was never fully engaged with by professionals, contributing to overall perception of antenatal screening as disempowering and leading to disengagement.

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Section: Discussionmentioning

confidence: 92%

Resignifying the sickle cell gene: Narratives of genetic risk, impairment and repair

2016

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“…) and reproduce ideas around what is normal. In short, the categories of normality and abnormality are culturally constructed, associated with the production of a social, moral, and political order (Latimer ; Vailly ).…”

Section: Discussionmentioning

confidence: 99%

“…This discourse legitimizes public policy (Vassy et al 2014), yet frequently glosses over the need for a critical engagement with how Down syndrome and other conditions are configured (or not) in antenatal care. More broadly, it masks how the category of abnormality is both reproduced and expanded in such medicalized practices (Vailly 2008). Under the guise of giving pregnant women choice, developments in biomedicine allow for the control over the type/quality of fetuses (Vassy et al 2014) and reproduce ideas around what is normal.…”

Section: Discussionmentioning

confidence: 99%

“…Under the guise of giving pregnant women choice, developments in biomedicine allow for the control over the type/quality of fetuses (Vassy et al 2014) and reproduce ideas around what is normal. In short, the categories of normality and abnormality are culturally constructed, associated with the production of a social, moral, and political order (Latimer 2013;Vailly 2008).…”

Section: Discussionmentioning

confidence: 99%

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An Elephant in the Consultation Room?: Configuring Down Syndrome in British Antenatal Care

Thomas

2016

Med Anthropol Q

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This article is based on an ethnographic study of prenatal screening for Down syndrome in two British health care institutions. Drawing on observations of everyday hospital life and interviews with health care professionals, I identify how a discussion of Down syndrome is avoided during prenatal screening consultations. This relative silence is created and upheld because of three things: (1) the British public is considered as knowing what Down syndrome is; (2) the organization of care dictates that the condition is not classified as important enough to justify an explanation within consultations; and (3) professionals frequently admit to having minimal knowledge of Down syndrome. This absence, together with the condition being categorized as a risk or problem, helps produce and uphold its status as a negative pregnancy outcome. I conclude by highlighting the contributions that this article has for anthropologically exploring how ideas around disability intersect with the proliferation of reproductive technologies.

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“…or even no symptoms at all, are a notable variant to this situation. As I have shown in another article, they offer a point of intersection between the newborn and the prenatal grounded in an extension of the idea of abnormality to screened newborns, and to later pregnancies (Vailly 2008). 8 .…”

mentioning

confidence: 99%

Genetic Testing, Birth, and the Quest for Health

Vailly

2013

Science, Technology, & Human Values

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Newborn screening for genetic diseases has developed rapidly in Western countries. These biopolitics raise the question of birth as a sociological “knot” insofar as it is the threshold between the (possibly ill or disabled) child and the fetus. The question therefore addressed in this text, based on a field study of newborn screening for cystic fibrosis in France, is that of the link between the quest for good health (through treatment) and the elimination of poor health (by prenatal diagnosis). Do they reinforce each other or, on the contrary, are they contradictory? I analyze the positions of both mothers of screened children and clinicians regarding the following three points: prenatal diagnosis to preclude sets of sick siblings, identification of heterozygous individuals, and generalized prenatal screening. This study shows how increasingly attentive patient care and an increasingly demanding approach to prenatal diagnosis reinforce one another. It also analyzes the role of taking action early on and evaluating the lives of sick or disabled people in this process. In conclusion, I engage a more general discussion about what I suggest calling a “quality life.”

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The expansion of abnormality and the biomedical norm: Neonatal screening, prenatal diagnosis and cystic fibrosis in France

Cited by 15 publications

References 27 publications

Resignifying the sickle cell gene: Narratives of genetic risk, impairment and repair

Resignifying the sickle cell gene: Narratives of genetic risk, impairment and repair

An Elephant in the Consultation Room?: Configuring Down Syndrome in British Antenatal Care

Genetic Testing, Birth, and the Quest for Health

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