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

ANRS Contract (2009-2011) | Cermes3
Coordinator: Isabelle Ville (Cermes3)

In the majority of Western countries, prenatal diagnosis and screening (PND) technologies have become a practically inevitable stage of pregnancy monitoring. Given the absence of a curative solution for a number of diagnosed anomalies, the medical terminations of pregnancy became a way of preventing disabilities, bringing to the surface the question of eugenics as a form of private expression.

Facing the ethical stakes raised by these practices, regulation schemes have been set up. But they are struggling to frame techniques that are constantly extending and becoming more sophisticated, deeply modifying care of pregnancy, the conceptions of the fetus, and the social standards of childbirth. Although the extension of these techniques opens up the possibility of multiple societal and political choices, the weakness of the societal debate, combined with the feeling that scientific progress is ineluctable, often leaves practitioners to manage the technology and ethics of this “new” medical service.

Thus, prenatal medicine has been involved for thirty years in a form of social treatment of disability. During the same period, the traditional approach to disability has been largely questioned by disabled persons and disability studies, which has led to notable transformations in the representations and experience of disability. The perinatal field has remained at the margins of these evolutions.

This project aims to explore these two fields as one by approaching the uses of PND in their entanglements with research and technical evolutions, on the one hand, and prevention policies and the significances of disability on the other hand. Two lines of investigation are presented, defending a pragmatic approach and using qualitative methods:

1/ a social-historic analysis observes, since the late 1960s, convergences between the public-action, clinical, and research sectors that have supported the development and generalization of the PND in France. It analyzes these evolutions in connection with the emergence of new actors and new health standards. This part is based on an analysis of archives, and of the interviews and conversations collected during a “witnesses seminar.”

2/ A comparative analysis of the current use of PND in four countries (Brazil, France, Netherlands, and the United Kingdom) is made of the diversity of local forms of ownership beyond the globalization of scientific and technical innovation. National contexts are described (in terms of regulations, of the screening service, and of the care provided to disabled children). The study focuses in particular on the mechanisms through which an unfavorable technical result is anticipated and “translated” in terms of a future disability. The work is based on ethnographic observations and interviews in prenatal-diagnosis consultations, before and after an anomaly is detected.

The multidisciplinary team (sociology, history, anthropology, and philosophy) comprised two mixed research laboratories (CNRS, Inserm, and the EHESS), Cermes3 and the IRIS, and the GRIS (EA University of Rouen). It combined skills in the fields of science and technology, risk, act-based medical work, gender, disability, and health-related social mobilizations.

Previously, PND practices had hardly been analyzed in connection with the social treatment of disability. On the eve of revision of the laws on bioethics, clarifying this blind spot was to allow a better grasp of the stakes involved in PND, at the junction of technical, health, and social policies.