HomeBirth through the prism of disability

Birth through the prism of disability

Quand le handicap interroge la naissance

Historical, contemporary and comparative perspectives relating to the practices and experiences of prenatal diagnosis

Perspectives historique, contemporaine et comparative des pratiques et expériences du diagnostic prénatal

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Published on Friday, May 05, 2017 by Elsa Zotian

Summary

Prenatal diagnostic (PD) technologies have become an important, and almost unavoidable, milestone in pregnancy care. Developed to detect severe fetal anomalies, the aim of these technologies has been to provide reproductive choice (to continue or terminate the pregnancy), prepare for outcomes (palliative care or postnatal treatment), enable therapeutic interventions (for less severe anomalies) and manage delivery at a specialist unit. This two-day colloquium will bring together the perspectives of researchers, professionals and support group representatives to gain insights into the way technological developments, public policy and professional norms impact upon the practices of PD and individuals’ experiences. 

Announcement

Argument

Prenatal diagnostic (PD) technologies have become an important, and almost unavoidable, milestone in pregnancy care. Developed to detect severe fetal anomalies, the aim of these technologies has been to provide reproductive choice (to continue or terminate the pregnancy), prepare for outcomes (palliative care or postnatal treatment), enable therapeutic interventions (for less severe anomalies) and manage delivery at a specialist unit.

The implementation of PD at the end of the 1960's in the USA and Europe was consistent with public health policies in preventing anomalies at birth. However, the need to balance the risk of bringing a child with an impairment into the world with that of losing a healthy child (which is attached to invasive testing) modified pregnancy care practices over time. The gradual transition to ‘therapeutic modernity’ characterised by the development of bioethics, the collective mobilisation of health services users and disabled people to protect their rights also influenced the cognitive and moral context surrounding PD. This contributed to transforming both clinical practices and official discourses. The PD rhetoric gradually moved from the field of public health and disability prevention, to that of individual autonomy and the logic of choice. 

This two-day colloquium will bring together the perspectives of researchers, professionals and support group representatives to gain insights into the way technological developments, public policy and professional norms impact upon the practices of PD and individuals’ experiences. 

PD practices and experiences will be examined from different perspectives: first, in the light of the globalisation of technical innovation and the circulation of skills and knowledge, and how these impact upon local care provision; second, through the requirements of evidence-based medicine, the democratisation of health and growing legal accountability of clinicians and how these influence professional practice. A strong emphasis will be put on the experiences of women and couples who are faced with difficult decisions (often surrounded by uncertainty) and in particular on their cognitive, moral and emotional experiences. Finally, the way biomedical or clinical markers are extrapolated into future experience of disability will also be explored as well as what PD practices reveal about perceptions of disability experience.

The knowledge and experiences shared during this colloquium will provide insights into the way the tensions between normative scientific and ethical expectations, on the one hand and the organisational constraints on the other hand, reshape the relationship of care in clinical practices; the aim being to broaden social debate, still currently limited to medical, scientific and administrative experts.

English/French simultaneous translation

Participation at the conference is free, but registration is compulsory: https://dpn.sciencesconf.org/registration?forward-action=index&forward-controller=registration&lang=en

Provisional planning

Thursday, June 8, 2017

9:00 Registration

  • 10:00 Imperfect pregnancy: history of birth defect and prenatal diagnosis / La naissance imparfaite : histoire des anomalies congénitales et du diagnostic prénatal, Ilana Löwy : Historienne, Directrice de recherche, Inserm-Cermes3, Villejuif, France

Session 1 : Professional practices

  • 10:25 It’s not just about the information: facilitating informed decision making for women offered prenatal testing / L'information n’est pas tout : faciliter la prise de décision des femmes concernant le dépistage prénatal, Louise Bryant : Psychologist, Associate Professor in Medical Psychology, Leeds Institute of Health Sciences, University of Leeds, United Kingdom
  • 10:50 To be announced, Lisa Crowe

11:15 Break

  • 11:45 De l’élaboration des politiques à leur mise en œuvre. Le dépistage prénatal de la trisomie 21 en Angleterre, France et Pays-Bas / From policy making to service use. Down’s syndrome antenatal screening in England, France and the Netherlands, Carine Vassy : Sociologue, Maitresse de Conférence à l’Université Paris 13, Chercheure associée à l’IRIS, Paris, France
  • 12:10 To be announced , Marc Dommergues : Professeur de gynécologie obstétrique, Hôpital Pitié Salpêtrière, représentant du Réseau Périnatal de l’Est Parisien

12:35 Discussion

13:00 Lunch

Session 2 : Experience of women and couples

  • 14:00 Quelques enseignements à partir d’une analyse quantitative de l’enquête PICRI sur l’expérience des femmes du diagnostic prénatal  / Key insights from a quantitative analysis of the PICRI study regarding women’s experiences of prenatal diagnosis, Madeleine Akrich : Collectif interassociatif autour de la naissance (CIANE)
  • 14:25 Du diagnostic prénatal à la décision de poursuivre ou d’interrompre une grossesse : une enquête d’éthique clinique en contexte français /On prenatal diagnosis and the decision to continue or terminate a pregnancy in France: a clinical ethics study, Marie Gaille : Philosophe, Directrice de recherche au CNRS-SPHERE, Paris, France
  • 14:50 L’expérience des femmes ayant eu une interruption de grossesse pour anomalie fœtale  / Women's experiences of termination of pregnancy for fetal anomaly, Sophia Rosman : Sociologue, Ingénieur de recherche à l’INSERM-Cermes3, Villejuif, France

15:15 Break

  • 15:45 Quand une anomalie est diagnostiquée à la naissance / When an anomaly is diagnosed at birth, Caroline Lafarge : Psychologist, Lecturer at the University of West London, London, United Kingdom
  • 16:10 Can we ask difficult questions at difficult times? /Peut-on poser des questions difficiles aux moments difficiles ?, Helen Statham : Psychologist, Retired Senior Research Associate and Deputy Director, Centre for Family Research, University of Cambridge & Founder Member & Former Chair of Antenatal Results and Choices,  United Kingdom
  • 16:35 Association « La petite Emilie », pour les personnes confrontées à une interruption médicale de grossesse et à un deuil périnatal, Paris, France. / Support group « La petite Emilie », for couples facing pregnancy termination for fetal anomaly and perinatal grief

17:00 Discussion

Friday, June 9, 2017

Session 3 : What people with disabilities say

  • 10:00 The role of experiential knowledge in prenatal testing decisions: the experiences of families living with Spinal Muscular Atrophy (videoconference) / Le rôle de l’expérience personnelle dans les décisions concernant le diagnostic prénatal : le cas des familles confrontées à l’amyotrophie spinale progressive (visioconférence), Felicity Boardman : Sociologist, Assistant Professor at University of Warwick, United Kingdom
  • 10:25 Prenatal diagnosis and disability rights: the more it changes, the more it remains the same? / Le diagnostic prénatal et les droits des personnes handicapées : plus ça change, plus c’est la même chose ?, Aviad Raz : Sociologist, Professor at Ben-Gurion University, Israel
  • 10:50 Le diagnostic prénatal de la trisomie 21 ou la disparition de l'enfant idéal: Entre fractures sociales, altérité, résilience et citoyenneté / Down’s syndrome prenatal diagnosis or the disappearance of the ideal child: between social divide, otherness, resilience and citizenship, Thierry Zoumara : Président de Trisomie 21 Paris, Président de Trisomie 21 Île de France

11:15 Discussion

11:45 Lunch

Session 4 : Non invasive testing

  • 13:15 Le dépistage prénatal non invasif de la trisomie : réflexions à partir des échanges sur un  forum de discussion grand public / Non invasive prenatal testing: reflections inspired by discussions on a public forum , Anne Evrard : Collectif interassociatif autour de la naissance (CIANE)
  • 13:40 To be announced , Olivier Scemama : Responsable du groupe DPNI, Haute Autorité de Santé
  • 14:05 Alexandra Letourneau, Gynécologue-Obstétricienne, Hôpital Antoine Béclère (à confirmer)

14:30 Discussion

15:00 Break

Session 5 : Professional practices

  • 15:15 Les attitudes des praticiens face au risque d’anomalie fœtale en France. Quand régulation rime avec autonomie professionnelle / Practitioner’s attitudes towards the risk of fetal anomaly in France. When regulation goes hand-in-hand with professional autonomy, Isabelle Ville : Sociologue, Directrice de recherche Inserm-Cermes3, Directrice d’études EHESS, Paris, France
  • 15:40 Comment assurer une médiation entre le pré et le post-natal ? Le cas des agénésies du corps calleux  / Mediating between the pre- and postnatal period? The example of corpus callosum agenesis, Marie-Laure Moutard : Neuropédiatre, Professeure à l’APHP-Hôpital Trousseau, Paris, France

16:05 - 17:00 Discussion

Places

  • Amphithéâtre François Furet, EHESS - 105 Boulevard Raspail
    Paris, France (75006)

Date(s)

  • Thursday, June 08, 2017
  • Friday, June 09, 2017

Keywords

  • diagnostic prénatal, handicap, naissance, disability, birth, prenatal diagnostic

Contact(s)

  • Cristina Popescu
    courriel : cristina [dot] popescu [at] ehess [dot] fr

Information source

  • Cristina Popescu
    courriel : cristina [dot] popescu [at] ehess [dot] fr

To cite this announcement

« Birth through the prism of disability », Colloquium, Calenda, Published on Friday, May 05, 2017, http://calenda.org/404246