Cloth: 978-0-226-53412-1 | Paper: 978-0-226-53409-1 | Electronic: 978-0-226-53426-8
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ABOUT THIS BOOK
Tangled Diagnoses examines the multiple consequences of the widespread diffusion of this medical innovation. Prenatal testing, Ilana Löwy argues, has become mainly a risk-management technology—the goal of which is to prevent inborn impairments, ideally through the development of efficient therapies but in practice mainly through the prevention of the birth of children with such impairments. Using scholarship, interviews, and direct observation in France and Brazil of two groups of professionals who play an especially important role in the production of knowledge about fetal development—fetopathologists and clinical geneticists—to expose the real-life dilemmas prenatal testing creates, this book will be of interest to anyone concerned with the sociopolitical conditions of biomedical innovation, the politics of women’s bodies, disability, and the ethics of modern medicine.
TABLE OF CONTENTS
To See What Is about to Be Born
[prenatal testing;prenatal screening;abortion;obstetrical ultrasound;aneuploidy;serum markers;circulating fetal DNA(cfDNA);non-invasive prenatal testing (NIPT)]
The introduction starts with a description of the author’s initial hope that research on prenatal diagnosis will be less stressful than her previous research on cancer. She had rapidly discovered that this is not the case. Prenatal diagnosis is decidedly not a stress–free topic:it deals with conditions which often cannot be treated and with complex ethical dilemmas. The introduction provides then a short history of the prenatal diagnosis 'dispositif' - a heterogeneous array of techniques and approaches which, together, make possible the scrutiny of living fetuses. When a woman who lives in a country in which abortion is legal receives a diagnosis of a severe fetal anomaly, she can elect to terminate the pregnancy. By consequence, debates on prenatal diagnosis are often dominated by the difficult issue of selective abortion, and neglect other key aspects-material, professional, organizational, institutional, juridical and economic-linked with the widespread diffusion of this diagnostic approach.
One / The Liminal Fetus
[fetus;genetic counseling;midwives;pregnacy products;fetal images;mourning rites]
Chapter 1 studies the indeterminate and fluid status of the human fetus, especially the 'biomedical fetus,’ shaped by new medical technologies. It describes the changing trajectories of fetuses inside and outside women's bodies and their shifting role as symbolic and cultural objects. The oscillating status of the fetus/unborn child is at the center of debates that link prenatal diagnosis to a selective abortion. Professionals who manage termination of pregnancy are often divided and undecided as to whether they are dealing with a "fetus," a "product of pregnancy," or a "baby." The same may be true for some women who undergo this procedure. A combination of the distress of women who face pregnancy loss, uneasiness of health professionals who treated these women, scandals produced by discovery of disrespectful treatment of fetal remains in hospitals, and the consolidation of the juridical status of the fetus, led to a codification of rules of management of fetal bodies and rise of specific rites of mourning for miscarried and aborted fetuses.
Two / Genetics, Morphology, and Difficult Diagnoses
[obstetrical ultrasound;dysmorphology;karyotype;comparative genomic hybridization (CGH);autopsy;virtual autopsy]
Chapter 2 examines efforts to limit the uncertainties of prenatal diagnosis through the juxtaposition of results obtained with three approaches: obstetrical ultrasound, analysis of the fetal genome, and dissection of dead fetuses. Improvement of resolution of ultrasound images and of operators' skills, and the possibility of studying fetuses in three dimensions has greatly extended the possibility of scrutinizing the unborn. On the other hand, changes observed on the ultrasound screen are often insufficient to provide a definitive diagnosis of a fetal impairment. Women diagnosed with structural fetal anomalies during an ultrasound examination are frequently advised to undergo genetic testing. The results of genetic/ genomic tests can clarify the nature of the observed structural anomalies. They can also increase diagnostic and prognostic uncertainty. Dissection data provided by fetopathologists help to clarify the meaning of "suspicious" ultrasound images and abnormal genetic findings.
Three / Diagnostic Puzzles: Fetopathology in France
[France;fetopathology;clinical genetics;autopsy;voluntary interruption of pregnancy;medical interruption of pregnancy;comparative genomic hybridization]
Chapter 3 is grounded in observations made in the fetopathology service of a major French research and teaching hospital. French women can freely decide to have an abortion only until the 14th week of pregnancy. After 14 weeks, abortion for a fetal or maternal indication is possible only with the approval of an interdisciplinary ethics committee, although in the great majority of cases hospital-based committees accept women’s demands to terminate the pregnancy. An important proportion of the fetuses studied by French fetopathologists were aborted following a diagnosis of a fetal anomaly. Fetopathologists collaborate closely with clinical geneticists, fetal medicine experts, gynecologists and pediatricians, in order to solve difficult diagnostic and prognostic puzzles and limit diagnostic and prognostic uncertainty. French specialists aspire to reduce the risk of diagnostic errors which can lead either to abortion of a healthy fetus or the unanticipated birth of a severely impaired child; they also want to distribute responsibility for complex diagnostic decisions.
Four / Visible Disasters: Fetopathology in Brazil
[Brazil;fetopathology;anencephaly;diagnostic ultrasound;miscarriage;Systema Unico de Saude;private health insurance]
Chapter 4 is grounded in observations made in the fetopathology service of a major Brazilian research and teaching hospital. In many countries prenatal diagnosis is controversial because it is linked with selective abortion. In Brazil such a link does not exist, officially at least, because abortion for a fetal indication is criminalized, with the sole exception of anencephaly. Since nothing can be legally done until a child is born, an accurate diagnosis of a fetal anomaly is less important in Brazil than in countries where such a diagnosis leads to difficult decisions about the pregnancy’s future. Affluent Brazilian women diagnosed with a severe fetal impairment can often elect a safe abortion in a clandestine clinic. However, illegally aborted fetuses are not studied by fetopathologists. The latter perform only autopsies on miscarried fetuses and stillborn children, and work in a relative isolation. Brazilian fetopathologists strive to produce an accurate knowledge about fetal anomalies but, at the same time, are aware of the limits of their intervention, and know that they are often dealing with the fallout of a system which is unjust to many women.
Five / Balancing Risks: PND and the “Prevention of Disability”
[disability;disability rights activism;selective abortion;expressivist objection to prenatal diagnosis;eugenics;intellectual impairment;Down syndrome]
Chapter 5 investigates the links between prenatal diagnosis, selective abortion for fetal impairment, and disability rights. It discusses disability activists' opposition to selective abortion of impaired fetuses - equated by them with the physical elimination of impaired people - as the extreme expression of a normalizing, health-obsessed society, in which disability is described as a ‘tragedy’ and a situation to be avoided at any cost. This chapter examines the validity of the activists’ assumption that a woman's decision to terminate a pregnancy following a 'positive' prenatal diagnosis (refusal of this child) is radically different from abortion because a woman is unwilling to become a mother at a given moment of her life (refusal of a child). It then debates the thorny problem of care of severely disabled persons. Care tasks may be especially challenging when dealing with people with substantial intellectual disabilities, who may need lifelong caretaking - often provided by their mothers, who may pre-decease them.
Six / PND, Reproductive Choices, and Care
[hereditary disease;experiential knowledge;reproductive decisions;care work;maternal duties]
Chapter 6 focuses on reproductive decisions of women aware of the presence of a hereditary condition in their family. Prenatal diagnosis originated in a wish to prevent the transmission of hereditary conditions. In the 21st century, only a small fraction of the terminations of pregnancy for fetal indications are linked with such conditions. The management of hereditary disorders continues, however, to play an important role in reflections on prenatal diagnosis. This chapter follows decision about prenatal testing made by people at risk of giving birth to a child with a hereditary pathology. Such decisions are often presented in absolute terms, either as entirely positive – ending a family ‘malediction’–or entirely negative –disavowal of the value of life of family members with inborn impairments. In practice, however, one can observe important differences in individual and collective perceptions of specific hereditary disorders and attitudes to prenatal diagnosis and selective abortion. One can also observe a large spectrum of interpretation of the term ‘responsible motherhood,’ and great variability of situated perceptions of maternal care tasks.
Conclusion / A Nonscrutinized Diagnosis
[total social conflicts;bioethics;risk management;diagnostic uncertainty;maternal ambivalence]
The concluding chapter argues that while living fetuses have become increasingly accessible to experts’ gaze, prenatal diagnosis itself has eluded critical scrutiny. The focalization of debates about prenatal testing on moral issues, above all the highly emotional issue of selective abortion of ‘flawed’ fetuses, has deflected attention away from other problems generated by the dissemination of this biomedical technology. Some among these problems - such as false positive and false negative results, the risk of embarking on a taxing diagnostic odyssey, the stress produced by prognostic uncertainty, and the consequences of incidental findings - are shared with other screening and diagnostic approaches. Others, like the material aspects of interruption of pregnancy, the liminal status of the fetus, and women's ambivalence about their reproductive decisions, are specific to the scrutiny of the living fetus. The conclusion ends with a subjective list of topics, especially those seen as problematic and unsettling, missing from present-time deliberations about prenatal diagnosis.
Coda / Minerva’s Owl and Apollo’s Lyre
[Justyna Bargielska;Frida Kahlo;Diego Rivera;art;pregnancy loss;emotions]
This short chapter argues that a ‘positive’ prenatal diagnosis - that is, the diagnosis of a serious anomaly of the fetus - is always the announcement of a forthcoming loss: loss of a pregnancy or loss of the hope of birth of a healthy child. Academic research has a limited capacity for dealing with emotionally charged issues. Art provides very different means to reflect on such issues. The coda juxtaposes two art works which deal with pregnancy loss, reproductive ambivalence and the liminal status of the fetus: a 2010 collection of short stories Obsoletki by a Polish poet, Justyna Bragielska, and the 1932 painting, 'Henry Ford Hospital', by the Mexican artist Frida Kahlo. Very dissimilar in intention and execution, both art works combine raw sentiment, empathy and irony, and both firmly place failed pregnancies within the fragile, glorious, messy, tragic, banal, ambivalent, risky, and hopeful stream of life.