Tangled Diagnoses: Prenatal Testing, Women, and Risk

Tangled Diagnoses: Prenatal Testing, Women, and Risk. Ilana Löwy, Chicago: University of Chicago Press, 2018, 319 pp.

In November 2018, I attended the now infamous 2nd International Summit on Human Genome Editing in Hong Kong. Until then, scientists had agreed that it was too early to begin trials on human embryo editing because of safety concerns related to potential unintended “off-target” effects resulting from germline editing. Just one day before the summit, as delegates arrived in Hong Kong, He Jiankui from the Southern University of Science and Technology in Shenzhen shocked the world by announcing that he had carried out a “successful” human trial.

Shortly after the summit, I reflected in a blog post (Wahlberg 2018) that since it seems very plausible that Lulu and Nana are the world’s first gene-edited babies, my colleague Tine Gammeltoft and I would have to update our definition of selective reproductive technologies (SRTs) (Gammeltoft and Wahlberg 2014) to now include “the selective editing of gametes and embryos.” He Jiankui’s actions were swiftly condemned by the Summit’s Organizing Committee, which nevertheless ended up concluding that “it is time to define a rigorous, responsible translational pathway toward [clinical] trials” for human embryo editing. This conclusion, in turn, has reignited “slippery slope” and “designer baby” debates. Whether the Hong Kong summit will end up being remembered as the ill-famed moment when a new era of human embryo editing came into being remains to be seen.

Such developments notwithstanding, when it comes to selective reproduction in the 21st century, selective termination of pregnancy following prenatal screening and testing remains by far the most pervasive SRT in the world. An estimated 45 million induced abortions are performed every year, and anywhere between 0.2 and 1% of these are carried out to prevent disease and/or disability. Given these statistics, Ilana Löwy’s Tangled Diagnoses: Prenatal Testing, Women, and Risk is an essential contribution to social studies of reproduction, history of medicine, and medical anthropology. Tangled Diagnoses is a vigorous socio–historic account of how a prenatal diagnosis (PND) dispositif—“a heterogeneous array of techniques and approaches that, combined, make the scrutiny of living fetuses possible” (p. 8)—has stabilized globally over the past few decades, using France and Brazil as two strikingly different national cases.

Indeed, the contribution is all the more remarkable when read together with Löwy’s 2017 Imperfect Pregnancies: A History of Birth Defects and Prenatal Diagnosis. With so much empirical focus on the new genetics in social studies of selective reproduction, Löwy reminds us that the “history of PND is, to an important extent, a history of the investigation of morphological anomalies – more precisely, a combination of studies of atypical form and abnormal heredity” (p. 53). Selective termination of pregnancy involves biomarker screening and testing using blood, amniotic fluid, or chorionic villus samples from pregnant women, in combination with sonographic fetal images and fetal dissection following termination. As Löwy shows, the interpretation of biomarker-based risk scores, ultrasound fetal images, and fetal dissection is surrounded not only by scientific complexity and uncertainty but also by emotionally charged and nationally framed ethical debates concerning what a life worth living is, together with associated abortion politics. It is for these reasons that PND inevitably leads to tangled diagnoses.

Tangled Diagnoses consists of an introduction, six chapters and a conclusion/coda, which the reader can helpfully divide into three parts. The first two chapters set the scientific scene, introducing readers to the biomedicalized field of prenatal diagnosis. These chapters emphasize the liminality of the fetus—akin to what Barbara Katz Rothman (1986) famously called the tentative pregnancy—as well as the numerous difficulties that frustrate definitive fetal diagnoses.

The second part of the book (Chapters 3 and 4) is a comparison of how PND is clinically practiced in France and Brazil respectively. These are excellent countries to compare, given clear differences in abortion politics (abortion is outlawed in Brazil and allowed in France) and health care systems (universal healthcare in France vs. commercially stratified healthcare in Brazil). There are many variances to explore as a result. One of the most important, according to Löwy, is that

Brazilian physicians can emphasize the difficulty in predicting the child’s future, because they face fewer risks if they fail to correctly diagnose a fetal problem. A disastrous outcome of a pregnancy can be blamed on Nature, God, or, for some, the conservatism of Brazilian legislators. (p. 146)

By contrast, a diagnostic mistake in France can “affect the physician’s reputation and their self-perception as a competent professional and healer” (p. 145). Finally, in the third section (Chapters 5 and 6), Löwy shifts her empirical focus to the United States and Europe to explore what she calls the “situated dilemmas of PND” (p. 215) that emerge out of uncertain alliances between disability rights and abortion activists on the one hand, and patient experiences and associations on the other. In such debates, the impossibility of knowing how badly a child will be affected by even a definitive diagnosis, different ways of valuing life (whether from the perspective of the unborn, the family, or the state), and the everyday struggles of families who live with a congenitally disabled or genetically ill child are in perpetual tension. And as a result, it is within this triangle of the science of PND, its clinical practice (in different socio–legal contexts) and public debate and activism that tangled diagnoses emerge.

Tangled Diagnoses is essential reading for anyone interested in selective reproduction in the 21st century. I must admit that while reading it, I did get somewhat frustrated as I had assumed that (not least based on the book’s back cover blurb) I would be reading a comparative analysis of PND in Brazil and France. This is definitely not the case. Instead, as my suggestion to divide the book into three parts indicates, comparing PND as a clinical practice in France and Brazil is a productive way to highlight the ways in which such practice is always shaped by socio–historical processes of routinization, an approach that I too have developed and pursued through the years by combining empirical attentiveness to both historical and ethnographic situatedness. Nevertheless, I am left (rather desperately!) wondering about differences between France and Brazil when it comes to disability rights movements, abortion politics, and patient association activism

As noted, the final two chapters are based primarily on Euro–American sources. I definitely agree with Löwy’s suggestion that PND can be defined as a dispositif, yet I would insist that the PND dispositif is different in France than it is in Brazil. And while I am sure Löwy would agree, it would have strengthened an already tremendous work if we had been provided with some concluding thoughts on these two different dispositifs, bolstered by insights into the differing debates and activism that surround PND in these two countries. The good news is that Löwy, with her two recent books, Tangled Diagnoses and Imperfect Pregnancies, has helped ensure that social studies of selective reproductive technologies is now an accomplished subfield within the anthropology and history of reproduction.

 

References Cited

Gammeltoft, T. M., and A. Wahlberg. 2014. Selective Reproductive Technologies. Annual Review of Anthropology 43: 201–16.

Löwy, I. 2017. Imperfect Pregnancies: A History of Birth Defects and Prenatal Diagnosis. Baltimore: JHU Press.

Rothman, B. K. 1986. The Tentative Pregnancy: How Amniocentesis Changes the Experience of Motherhood. New York: Viking Penguin.

Wahlberg, A. 2018. Did Human Embryo Editing Just Get Platformed? Changing (In)Fertilities. https://www.cifp.sociology.cam.ac.uk/news/did-human-embryo-editing-just-get-platformed (accessed February 8, 2019).

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