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Mirlesse Véronique

PhD student in Economic and Social Sciences, Paris 11 University

Laboratories: Cermes3 (Villejuif), Medicine, Health, Society team, Instituto Fernandes Figueiras, Saude da criança e da mulher Fiocruz (Rio de Janeiro, Brazil)

Contact: mirlesse.v(at)gmail.com

Dissertation title: Anticipating the disability experience within the framework of prenatal diagnosis: A France-Brazil comparative study

Under the supervision of Isabelle Ville (Cermes3) and Suely Deslandes (Fiocruz)

Extending prenatal diagnosis is at the core of public debates in many countries. Screening for fetal anomalies by means of specific tools and implementing sophisticated diagnostic procedures to diagnose possible fetal diseases before birth are processes facing not only the laws and cultural specificities of each country but also how the disability experience is anticipated.

In my work, I develop an approach to this anticipation from the sociological point of view. The disability issue has been debated nationally and internationally over the last thirty last years, resulting in an inflection in the conceptions, legislations, and practices contributing to transform the everyday experience of a life with impairments. Prenatal diagnosis, defined by the public-health code in France as the set of “medical practices aimed at detecting in utero a particularly serious disease in the embryo or fetus,” is part of disability prevention. It then appears essential to analyze the different understandings produced and circulated in the space defined by these practices, to explore the experience of the disability designated in the prenatal period among both the experts and the parents involved.

The mechanisms of the transition from the result of a prenatal examination to the anticipation of a life with a disability are complex. They involve different actors (professionals, families, administrators, the media, community-based organizations, etc.) and different procedures (technical tools, rules of organization of the services, legal frameworks, etc.). I have set up a qualitative survey (ethnographic observations and interviews with women and professionals in Brazil). On the one hand, I analyze the use of technical tools such as obstetric ultrasound to screen for fetal malformation in Brazil, where termination of pregnancy is considered a crime, and on the other hand I perform a comparative analysis between France and Brazil, which have very different legal and regulatory contexts. The French data comes from observations conducted by Isabelle Ville under the ANR research program on disability and prenatal diagnosis (DPN-HP). Grounded theory methodology is used to analyze the data.

In parallel, I analyze the answers to a questionnaire submitted at two different periods to women in France who have had to face a termination of pregnancy for reasons of fetal pathology. This investigation reveals how the legal framework plays a key role in fashioning the experience of women facing termination of pregnancy for reasons of fetal pathology.

This approach to the production and circulation of the significance of disability in the regular follow-up of pregnancies sheds new light on prenatal diagnosis. It transcends the usual dualism between on the one hand the pragmatic and local analysis of actions focused on professional practices, and on the other an ethical analysis penetrated by universal morals issues, by focusing on the development of practices in everyday care.

DPN-Hp: The stakes of prenatal diagnosis (PND) in the prevention of disabilities: Using technology between scientific progress and public action: website (in French)