Les anomalies morphologiques sévères ou congénitales sont l'une des principales causes de morbidité et de mortalité infantile. Certaines de ces pathologies diagnostiquées en anténatal sont difficilement compatibles avec une survie postnatale. Il arrive que des femmes choisissent, malgré tout, de poursuivre la grossesse et les soins palliatifs périnatals apparaissent comme une des réponses à apporter. Ils constituent à l’échelle internationale un nouveau domaine de pratique clinique avec des dilemmes décisionnels. Il importe d’identifier les déterminants qui influencent les modes de résolutions de ces tensions éthiques. Notre travail explore les perceptions et les pratiques des professionnels susceptibles de faire sens à une demande de poursuite de grossesse en intégrant dans leur démarche l’incertitude inhérente à la période postnatale. Cette réflexion vise à questionner la normativité effective dans la pratique de l’interruption médicale de grossesse notamment, face aux dilemmes et divergences qui alimentent les prises de décisions et les pratiques professionnelles autour des soins palliatifs néonatals. Notre recherche s’articule autour de trois axes : premièrement, étude qualitative, des perceptions d’experts de la périnatalité vis-à-vis des pathologies fœtales létales et des soins palliatifs périnatals : représentations, opinions et pratiques professionnelles ; ensuite, enquête, à l’échelle nationale, de la démarche palliative périnatale à partir des perceptions et des pratiques professionnelles ; et en dernier lieu, approche éthique de la démarche palliative à partir du diagnostic d'anomalies fœtales létales et des pratiques professionnelles en médecine périnatale. / Severe or congenital morphologic anomalies are one of the main causes of infantile morbidity and mortality. Some of these antenatally diagnosed pathologies are difficult to get compatible with postnatal survival. In this context, some women choose to continue with pregnancy. Subsequently, perinatal palliative care seems to be a constructive answer to offer in such situations. It constitutes, at international level, a new clinical practice where decision dilemmas exist (prognostic uncertainty, prolonged survival, and attachment to the infant). It might be necessary to identify the factors that can affect the way of dealing with these ethical tensions. Without any national data, our work explores the perceptions and professional practices susceptible to influence parental request for continuing with pregnancy, despite the uncertainty corresponding to the postnatal condition of a newborn with lethal pathology. This thinking aims to question and debate the normativity that is to be effective especially in medical termination of pregnancy, confronting the dilemmas and divergences that affect decision taking and professional practice in neonatal palliative care.Our research revolves around three perspectives: Firstly, and at a local level, qualitative study of expertise perceptions of perinatality regarding lethal fetal pathologies and perinatal care: representations, opinions and professional practices; secondly,and at a national level, investigation of initiatives taken in perinatal care based on perceptions and professional practices; thirdly,ethical approach to the medical care as inspired by these lethal fetal pathologies and professional practices in perinatal medicine.

Cette thèse analyse les pratiques du diagnostic prénatal (DPN) en France et au Brésil, entre mondialisation des savoirs et des techniques et régulations locales, à la recherche des modalités d’anticipation du handicap. Le DPN s’est développé dans les pays d’Europe et d’Amérique du Nord en lien direct avec les législations sur l’avortement. Il a pris ancrage dans le suivi des grossesses comme l’un des modes de prévention des handicaps à la naissance. Son expansion aux pays où l’accès à l’avortement est restreint oblige à des adaptations fonction des régulations locales. Les dispositifs réglementaires encadrent le travail professionnel (travail en réseau, pluridisciplinarité) et l’enregistrement des pratiques (omniprésent en France, absent au Brésil). Ils modulent, en France, l’expérience des femmes ayant vécu une interruption de grossesse pour pathologie fœtale, comme en témoigne l’analyse de questionnaires semi directifs soumis à deux groupes de femmes à deux époques différentes. En 1999 les femmes réclament plus d’autonomie dans la prise de décision d’interruption. En 2005, elles sollicitent plus volontiers une décision partagée avec les praticiens, mais considèrent que la décision leur revient plus spécifiquement lors des termes tardifs, dans les situations à risque de retard mental, de grande incertitude pronostique, ainsi que dans le cadre de situations spécifiquement recherchées lors du parcours anténatal (telle la trisomie 21). Ces dispositifs réglementaires conditionnent aussi l’usage des techniques et les informations délivrées aux couples. Au Brésil, dans un contexte d’accès restreint à l’avortement et de fortes inégalités sociales, l’échographie en situation de normalité foetale glorifie la « naissance sociale anticipée» de l’enfant et de sa famille. En cas d’anomalie fœtale, une rupture radicale se produit. A l’hôpital public, qui concerne la majorité des femmes, la poursuite obligée de la grossesse règle l’attitude des praticiens : l’étude ethnographique menée à Rio de Janeiro montre que les obstétriciens optent alors pour l’éducation des femmes (dans l’espoir d’un accès progressif à l’autonomie, chemin espéré vers une société plus juste). Les pédiatres provoquent pour leur part un glissement sémantique proposant une utilisation positive de l’incertitude médicale qui modifie le cadre de la réflexion préservant une approche dynamique de l’accueil de l’enfant. Dans le secteur privé au Brésil, les interruptions de grossesse possibles hors des cadres légaux, sont maintenues sous le sceau du secret et ne laissent que peu entrevoir la dynamique décisionnelle préalable. L’anticipation du handicap lors des consultations prénatales met partout en avant la crainte du retard mental et de la souffrance pour l’enfant, le couple ou la fratrie, mais le discours varie selon les contextes : l’analyse comparative des observations souligne qu’en France, les praticiens utilisent la médecine basée sur les preuves pour informer le couple et réduire risques et incertitude en vue d’un choix nécessaire et dans le respect de l’autonomie décisionnelle des couples. Au Brésil, à l’hôpital public, la hiérarchie des priorités diffère: devenir mère, avoir un enfant vivant passent au premier plan. Le risque est présenté comme faisant partie de la vie et l’incertitude dynamique préserve l’avenir de l’enfant malade au sein de sa famille. Ces approches différenciées du risque et du handicap amènent à évoquer les évolutions récentes du champs du handicap qui ont peu pénétré l’univers du DPN. Portées notamment par les « disability studies », études menées par les personnes elles mêmes concernées par le handicap, elles considèrent le handicap comme un processus dynamique résultant d’une interaction entre l’état de santé et une situation sociale donnés. La thèse suggère en conclusion un rapprochement des savoirs, des expériences et des pratiques entre l’univers du prénatal et celui du handicap par le biais d’un dialogue inter et transdisciplinaire. / In search of modes of anticipating disability, this thesis examines and compares prenatal diagnosis (PND) practices in France and Brazil. In Europe and North America, PND has developed directly in line with legislation on abortion and is rooted in the monitoring of pregnancy, as one of the ways of preventing disability at birth. Its expansion into countries where access to abortion is restricted, is led by the globalization of knowledge and techniques, and has to be adapted to suit local regulations. Regulatory frameworks govern professional work (networking, multidisciplinarity) and the recording of PND practices (omnipresent in France, non-Existent in Brazil). As can be seen from our analysis of semi-Directive questionnaires given to two groups of women at two different periods of time, in France such mechanisms modulate the experiences of women who have undergone an abortion due to a foetal pathology. In 1999 women wanted greater autonomy when deciding whether or not to terminate a pregnancy. In 2005 they were more readily in favour of sharing decision-Making with doctors, but felt that the decision was theirs to make when it was a question of late-Term pregnancies, of situations with a risk of mental retardation, of major prognostic uncertainty, and of situations subject to specific tests during the prenatal period (such as Down’s Syndrome). These regulatory mechanisms also affect how technical tools are used and the information given to couples. In Brazil, in a context of restricted access to abortion and of very significant social inequality, an ultrasound in a situation of foetal normality glorifies the “anticipated social birth” of the child and its family. When a foetal anomaly is diagnosed, a radical rupture occurs. In public hospitals – used by the majority of women – obligatory continuation of pregnancy regulates doctors’ attitudes: the ethnographic study carried out in Rio de Janeiro shows that obstetricians have opted for the education of women (in the hope of gradual access to autonomy, hopefully the road towards a fairer society). Paediatricians produce a semantic shift, encouraging a positive use of medical uncertainty, which modifies the decision-Making framework and maintains a dynamic approach to welcoming the child-To-Be. In the private sector in Brazil, terminations of pregnancy which are possible outside of any legal framework are kept behind a wall of secrecy, revealing next to nothing about the prior decision-Making process. During prenatal consultations, the anticipation of a disability systematically brings out fears of mental retardation and of the suffering which will be caused to the child, the couple or siblings, but the discourse varies, depending on the context: a comparative analysis of our observations shows that, in France, doctors use evidence-Based medicine to inform couples and to reduce risks and uncertainties with a view to making a necessary choice, whilst at the same time respecting the couple’s decision-Making autonomy. In public hospitals in Brazil, there is a different hierarchy of priorities: the primary focus is that of becoming a mother and having a life-Born child. Risk is presented as being part of life and the dynamic aspects of medical uncertainty safeguard the future of the “sick” child within its family. These differentiated approaches to risk and disability lead us to consider recent evolutions in the field of disability which has so far had little impact on PND. Led in particular by “disability studies” – studies carried out by people who are themselves affected by disability – these evolutions consider disability to be a dynamic process resulting from an interaction between a given state of health and a given social situation. In its conclusion, the thesis suggests that the knowledge, experiences and practices of the prenatal world and that of disability be brought together through inter and transdisciplinary dialogue. / Essa tese analisa as práticas de diagnóstico pré-natal (DPN) na França e no Brasil, entre a mundialização de saberes, técnicas e regulações locais, focando as modalidades de antecipação da deficiência. O DPN desenvolveu-se nos países da Europa e América do Norte de forma diretamente relacionada com as leis sobre o aborto. Enraizou-se no monitoramento da gravidez como um dos modos de prevenção das deficiências. Sua expansão em países onde o acesso ao aborto é restrito leva a adaptações de acordo com as regulamentações locais. Disposições regulamentares enquadram o trabalho profissional (em rede, pluridisciplinar) e o registro das práticas (onipresente na França e ausente no Brasil). Elas modulam, na França, a experiência de mulheres que se submeteram ao aborto devido a uma patologia fetal, conforme evidenciado pela análise de questionários semi-estruturados aplicados em dois grupos de mulheres em duas épocas diferentes. Em 1999, as mulheres exigiam mais autonomia na tomada de decisões de interrupção. Em 2005, elas procuravam mais frequentemente uma decisão compartilhada com os médicos, porém consideravam que a decisão cabia a elas, especificamente em gestações mais adiantadas, em situações com risco de retardo mental, com elevada incerteza prognóstica, e no contexto de situações específicas rasteadas ao longo do percurso pré-natal (tal como a síndrome de Down).Estes mecanismos reguladores também condicionam o modo de utilização das técnicas e as informações fornecidas para os casais. No Brasil, em um contexto de acesso restrito ao aborto e de fortes desigualdades sociais, a ultrassonografia em situações de normalidade fetal glorifica o "nascimento social antecipado" da criança e a « ampliação » da família. Em caso de anomalia fetal, uma ruptura radical se produz.No hospital público, para onde vai a maioria das mulheres, a impossibilidade de interromper a gestação define a atitude dos profissionais: o estudo etnográfico realizado no Rio de Janeiro mostra que os obstetras optam então pela educação das mulheres (na esperança de um ganho progressivo de autonomia, em direção a uma sociedade mais justa). Os pediatras realizam, por sua vez, uma mudança semântica, proporcionando um uso positivo da incerteza médica que muda o contexto do debate, preservando uma abordagem dinâmica sobre a chegada da criança. No setor privado no Brasil, a interrupção da gravidez, possível fora dos quadros jurídicos, é mantida sob o selo do segredo e dá pequeno vislumbre da dinâmica anterior da decisão.A antecipação da deficiência durante o pré-natal dissemina o medo do retardo mental, do sofrimento para a criança, para o casal ou irmãos, mas o discurso varia de acordo com o contexto: a análise comparativa de observações destaca que na França, os médicos utilizam a medicina baseada em evidências para informar o casal e reduzir o risco e a incerteza, tendo em vista uma escolha necessária e o respeito à autonomia das decisões dos casais. No Brasil, no hospital público, a hierarquia de prioridades é diferente: tornar-se mãe, ter um filho vivo vêm em primeiro plano. O risco é apresentado como parte da vida e a dinâmica da incerteza salvaguarda o futuro do filho doente no seio de sua família. Estas abordagens diferenciadas de risco e deficiência nos remetem ainda mais aos recentes achados nas áreas da deficiência, que pouco penetraram no universo do DPN. Impulsionados principalmente pela área dos « disability studies », pesquisas conduzidas pelas próprias pessoas afetadas pela deficiência, esses estudos consideram a deficiência como um processo dinâmico, resultante de uma interação entre um estado de saúde e uma situação social determinada. A tese apresenta como conclusao a necessidade da aproximaçao entre o universo do pré-natal e o da deficiência, por meio de um diálogo inter e transdisciplinar, compartilhando conhecimentos, experiências e práticas.