Abstract
This article presents a part of the results of an empirical study conducted at a Parisian hospital between 2011 and 2014. It aimed at understanding the women and couples’ motivations to terminate or not a pregnancy once a prenatal diagnosis has revealed a genetically related disease in the embryo or fetus. The article first presents the social and legal context of the study, the methodology used and the pathologies that were encountered. Then, it examines the results of the interviews conducted with 5 women alone and 23 couples explaining their reasons for deciding to terminate or not the pregnancy. Finally, it explores the patients’ views about the doctor’s involvement in the decision-making process. The findings reveal the reasons they formulate when they ponder whether to terminate or not the pregnancy. It highlights the process of their deliberation, their hierarchisation of arguments and concerns. They also show how patients, though often consumed in sorrow, claim to be the legitimate decision-makers, especially women, in a social and legal context in which the rejection of eugenics is viewed as an undisputable principle.
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Notes
This other part of the study will be presented in another text.
In France, this debate makes little or no reference to the idea of “geneticization,” defined as a societal or cultural tendency to reduce individuals to their DNA (Lippman 1992), the sociological reality of which remains to be proved (Hedgecoe 2009). Nor is it related to human enhancement or to the quest for genetic perfection, in contrast to other contexts where this issue is more often discussed (Rose 2007; Savulescu and Bostrom 2009; Bateman et al. 2015). This question is not entirely absent from the ethical discussion (Gayon and Jacobi 2007). However, the crux of the debate concerns determining the threshold for a life worth living, based on the hypothesis that certain types of life perceived as “defective” would be eliminated and the moral legitimacy of such a threshold (Gavarini 1990; Gaille 2010; Gaille and Viot 2013; Vassy 2011; Vassy et al. 2014).
References
Allamel-Raffin, Catherine, Dominique Merg-Essadi, Jean-Christophe Weber, Thierry Rusterholtz, and Isabelle Pons. 2008. Le foetus dans l’acte d’IMG: un statut à géométrie variable. Ethique et santé, Revue des sciences sociales 39: 126–135.
Asch, Adrienne. 1999. Prenatal diagnosis and selective abortion: A challenge to practice and Policy. American Journal of Public Health 89: 1649–1657.
Bateman, Simone. 1979. La grossesse accidentelle et la demande d’avortement. L’Année Sociologique 30: 219–241.
Bateman, Simone. 1982a. Les récidivistes. Revue Française de Sociologie 23(3): 473–485.
Bateman, Simone. 1982b. Corps fécondable, corps réfractaire? Dialogue 76: 90–95.
Bateman, Simone, Jean Gayon, Sylvie Allouche, Jérôme Goffette, and Marzano Michela. 2015. Inquiring into human enhancement—interdisciplinary and international perspectives. Basingstoke: Pelgrave McMillan.
Boltanski, Luc. 1990. L’amour et la justice comme compétence. Métailié: Trois essais de sociologie de l’action. Paris.
Boltanski, Luc. 2004. La condition fœtale. Une sociologie de l’engendrement et de l’avortement. Paris: Gallimard.
Boltanski, Luc, and Laurent Thévenot. 1991. De la justification. Les économies de la grandeur. Paris: Gallimard.
Dekeuwer, Catherine, and Simone Bateman. 2011. Que dois-je transmettre à mes enfants? Gravité des maladies héréditaires et choix procréatifs. In Éthique et Famille, tome 2, ed. Edwige Rude-Antoine, and Marc Pievic, 143–163. Paris: L’Harmattan.
Dekeuwer, Catherine, and Simone Bateman. 2013. Much more than a gene: Hereditary breast and ovarian cancer, reproductive choices, and family life. Medicine, Health Care and Philosophy 16(2): 231–244. doi:10.1007/s11019-011-9361-9.
Dommergues, Marc, Laurent Mandelbrot, Dominique Mahieu-Caputo, Noel Boudjema, Isabelle Durand-Zaleski, et al. 2010. Termination of pregnancy following prenatal diagnosis in France: How severe are the foetal anomalies? Prenatal Diagnosis 30(6): 531–539.
Dref, Le, Bruno Grollemund Gaëlle, Anne Danion-Grilliat, and Jean-Christophe Weber. 2013. Towards a new procreation ethic: the exemplary instance of cleft lip and palate. Medicine, Health Care and Philosophy 16(3): 365–375.
Dusart, Agnès, and Dominique Thouvenin. 1995. La détection des anomalies fœtales: Analyse sociologique et juridique. Paris: Les Publications du C.T.N.E.R.H.I.
Gaille, Marie. 2010. La valeur de la vie. Paris: Les Belles Lettres.
Gaille, Marie, and Géraldine Viot. 2013. Prenatal diagnosis as a tool and a support for eugenics: myth or reality in French contemporary society? Medicine, Health Care and Philosophy 16(1): 83–91.
Gavarini, Laurence. 1990. Experts et législateurs de la normalité de l’être humain: vers un eugénisme discret. In Le magasin des enfants, ed. Jacques Testart, see below.
Gayon, Jean, and Daniel Jacobi. 2007. L’éternel retour de l’eugénisme. Paris: PUF.
Geller, G., E.S. Tambor, and E. Papiernik. 2002. Attitudes toward abortion for fetal anomaly in the second vs the third semester: A survey of Parisian obstetricians. Prenatal Diagnosis 22: 811–817.
Geertz, Clifford. 1973. The Interpretation of Cultures. New-York: Basic Books.
Glaser, Barney, and Anselm Strauss. 1967. The discovery of grounded theories: Strategies for qualitative research. New-York: A. de Gruyter.
Habermas, Jürgen. 2006. Religion in the public sphere. Eur J Philos 14(1): 1–25.
Hedgecoe, Adam. 2009. Geneticization: Debates and controversies. http://www.els.net. (accessed August 18 2015).
Kleinman, Arthur. 1988. The illness narratives: suffering, healing, and the human condition. Basic Books.
Kleinman, Arthur, Veena Das, and Margaret Lock. 1997. Social suffering. California: University of California Press.
Legros, Jean-Philippe. 2005. Quand la vie avant la vie est compromise : diagnostic anténatal et découverte d’une anomalie anténatale. Spirale 4(36): 79–86.
Lippman, Abbey. 1992. Led (astray) by genetics maps. Social Science and Medicine 12(35): 1469–1476.
Massé, Raymond. 2010. Les nouveaux défis pour l’anthropologie de la santé. Anthropologie & Santé, 1. http://anthropologiesante.revues.org/116. (Accessed August 18 2015).
McCoyd, J.L. 2009. What do women want? experiences and reflections of women after prenatal diagnosis and termination for anomaly. Health Care for Women International 30(6): 507–535.
Memmi, Dominique. 2003. Faire vivre et laisser mourir. La Découverte: Le gouvernement contemporain de la naissance et de la mort. Paris.
Mirless, Véronique, et al. 2000. Medical termination of pregnancy for fetal anomaly: the patient’s point of view. J Gynecol Obstet Biol Reprod (Paris) 29(2): 185–191.
Mirless, Véronique, et al. 2011. Women’s experience of pregnancy termination for fetal anomaly: Effects of socio-political evolutions in France. Prenatal Diagnosis 31: 1021–1028.
Mathieu, Séverine. 2013. L’enfant des possibles—Assistance médicale à la procréation—éthique, religion, filiation. Paris: éd. de L’atelier.
Parker, Michael. 2012. Ethical problems and genetics practice. Cambridge.
Rapp, Rayna. 2000. Testing women, testing the fetus: The social impact of amniocentesis in America (the anthropology of everydaylife). London: Routledge.
Rose, Nicholas. 2007. The politics of life itself—biomedicine, power, and subjectivity in the twenty-first century. Princeton: Princeton University Press.
Roussel, François. 1996. L’eugénisme—analyse terminée, analyse interminable ». Esprit 222(6): 26–54.
Savulescu, Julian and Nick Bostrom. 2009. Human Enhancement. Oxford: Oxford University Press.
Schütz, Alfred. 2010. Essais sur le monde ordinaire. Le Félin Poche: Paris.
Schmitz, Dagmar. 2013. A new era in prenatal testing: are we prepared? Medicine, Health Care and Philosophy 16(3): 357–364.
Schwennesen, Nete, Nele Svendsen, and Mette Koch. 2010. Beyond informed choice: prenatal risk assessment, decision-making and trust. Clinical Ethics 5: 207–216.
Singer, Peter, and Helga Kuhse. 1985. Should the baby live?. The problem of handicaped infants: Oxford University Press.
Singer, Peter, and Helga Kuhse. 2002. Unsanctifying human life: essays on ethics. London: Blackwell.
Vassy, Carine. 2005. How prenatal diagnosis became acceptable in France. Trends in Biotechnology 23(5): 246–249.
Vassy, Carine. 2011. De l’innovation biomédicale à la pratique de masse : le dépistage prénatal de la trisomie 21 en Angleterre et en France. Sciences sociales et santé 3(29): 5–32.
Vassy, Carine et Béatrice Champenois-Rousseau. 2012. Les échographistes face au dépistage prénatal de la trisomie 21. Le difficile arbitrage entre excellence professionnelle et éthique du consentement. Sciences sociales et santé, 4/30: 39-63.
Vassy, Carine, and Béatrice Champenois-Rousseau. 2014. L’annonce prénatale d’un risque de handicap. Perspective sociologique. Contraste 40(2): 133–144.
Vassy, Carine, Sophia Rosman, and Bénédicte Rousseau. 2014. From policy making to service use. Down’s syndrome antenatal screening in England, France and the Netherlands. Social Sciences and Medicine 106: 67–74.
Weber, Max. 1995 (1956 4th Posthumous ed.). Economie et société, 1, les catégories de la sociologie. Paris: Plon/Pocket.
Williams, Clare, Priscilla Alderson, and Bobbie Farsides. 2002. Too many choices? Hospital and community staff reflect on the future of prenatal screening. Social Sciences and Medicine 55(5): 743–753.
Williams, Clare, Jane Sandall, Gillian Lewando-Hundt, Bob Heyman, Kevin Spencer, and Rachel Grellier. 2005. Women as moral pioneers? Experiences of first trimester antenatal screening. Social sciences and Medicine 61(9): 1983–1992.
Acknowledgments
I want to express my warm thanks to the clinical ethics team with whom the study was carried out and who trusted me enough to let me propose the present analysis: Elisabeth Belghiti, Bernadette Broussille, Laurence Brunet, Véronique Fournier, and Géraldine Viot. Our collective work has been seminal to elaborate the analysis presented in this article, for which, however, I alone take the responsibility. In the name of this team, I would also like to express my gratitude to the staff of the Centre de Diagnostic Prénatal who hosted us and, despite a heavy schedule, gave us some of its valuable time.Likewise, we are all extremely grateful to the “patients,” the pregnant women and their partners, who were willing to participate in an ethics interview.I would like to thank Michèle Baussant, Frédéric Keck, Christophe Imbert, Anne-Marie Moulin, and again Véronique Fournier, for providing expert advice on an earlier version of this article.Finally, I would like to thank the members of the ETHOX Center (Oxford University). They welcomed me for a two-weeks research stay in 2012 dedicated to the bibliographical preparation of the clinical ethics study.
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The English editing of this paper was made possible thanks to the financial support of “La personne en medicine” Université Sorbonne Paris Cité Interdisciplinary Program.
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The study protocol was validated by the CERES (Le conseil d’évaluation éthique pour les recherches en santé, Université Paris Descartes).
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Informed consent was obtained from all individual participants included in the study. The confidentiality of their statements was guaranteed to them.
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Gaille, M. On prenatal diagnosis and the decision to continue or terminate a pregnancy in France: a clinical ethics study of unknown moral territories. Med Health Care and Philos 19, 381–391 (2016). https://doi.org/10.1007/s11019-016-9689-2
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DOI: https://doi.org/10.1007/s11019-016-9689-2