Abstract
Medical sociologists have documented how childbirth became fully medicalized in the twentieth century and how the entire experience of pregnancy followed suit by the end of the century. A key component of this medicalization has been the routinization of prenatal screening. Emblematic of, and contributing to, the widespread implementation of prenatal screening are professional guidelines, such as the American College of Obstetricians and Gynecologists’ 2007 practice guidelines, which recommended for the first time that, regardless of age, all pregnant women be offered prenatal screening.
Such developments have prompted concern among feminist scholars who question how these medical protocols affect women’s experience of pregnancy, as well as the extent to which patients have control over—and have “choices” about—the use of screening technologies. Also voicing concerns are disability rights activists, who critique the eugenic implications of prenatal screening, not least because positive results of such tests often result in termination. For instance, reports indicate high rates of abortion after a prenatal diagnosis of Down’s syndrome, the most common reproductive genetic abnormality and the one most commonly screened.
This is the case despite the fact that Down’s syndrome is a genetic condition that is generally associated with good life outcomes, especially amid changing views and improved treatment of individuals with Down’s syndrome in the last several decades. It is in the context of the normalization of Down’s screening—and in awareness of such critiques and concerns—that Gareth Thomas’s Down’s Syndrome Screening and Reproductive Politics: Care, Choice, and Disability in the Prenatal Clinic focuses a sharp analytic lens on the relatively understudied professionals in the clinics who are responsible for screening routinization even as they express ambivalence about it.
The data for Down’s Syndrome Screening and Reproductive Politics come from a year of field work Thomas engaged in at two UK prenatal clinics—one a National Health Service teaching hospital, the second a private fertility clinic connected to the hospital—that included observations of 150 clinical consultations, as well as observations of professionals’ interactions with each other, interviews with health professionals who worked at these sites, and analysis of relevant documents such as leaflets. Drawing on this rich set of ethnographic data, Thomas looks at the everyday and often overlooked practices of healthcare providers as they construct meanings about prenatal screening and Down’s syndrome. In so doing, Thomas’s book reveals how the “micro and mundane” contribute to the routine offering and uptake of screening for Down’s syndrome.
For instance, in the clinical settings Thomas studied, it was midwives and sonographers, not physicians, who were responsible for performing much of the routine prenatal screening and for discussing test results with patients. Thomas calls this passing off of prenatal screening consultations to non-physicians a downgrading of Down’s syndrome screening, with the work involved in such consultations viewed by health professionals as unimportant and as having less status. Thomas finds that midwives, in particular, viewed prenatal screening as a trivial procedure and the work involved in screening consultations as boring and unrewarding. Yet despite—and because—prenatal screening work is not a priority and is viewed as undesirable by the very workers who do it, Thomas elucidates how this downgrading process of Down’s syndrome screening functions to routinize and normalize such screening within the healthcare setting.
Another important finding from Thomas’s interviews is that the midwives who conducted most of the routine counseling did not approve of routine screening for Down’s syndrome. Their critiques of routine prenatal screening are in line with disability rights scholars in that they do not view Down’s syndrome as incompatible with a “good life.” They are also critical of the practice of offering the test alongside other routine tests, such as rubella and Hepatitis B.
The health professionals interviewed for this study also express other concerns that have been raised by disability scholars and feminists, from the eugenic implications to the anxiety such screenings can precipitate. By juxtaposing providers’ perspectives on routine Down’s screening with the roles they play in the clinic, Thomas employs the framework of backstage versus frontstage behavior. In so doing, he demonstrates how nondirective protocols of providing information, but not advice, and the rhetoric of informed consent are used to alleviate and suppress health professionals’ own ambivalences. As a result, Thomas illuminates how providers often contribute to prenatal screening’s routinization despite their personal lack of enthusiasm for it.
In addition to exposing providers’ cynicism and concerns about the routine offering of prenatal screening, Thomas’s observations of clinical interactions with patients also document how Down’s syndrome is rarely discussed in screening consultations. On the one hand, Thomas reveals the irony in how increased familiarity with Down’s syndrome leads to its invisibility, insofar as it becomes a topic that doesn’t seem to warrant discussion or explanation in the clinic. At the same time, he finds that the health professionals who were responsible for the screening consultations often lacked professional knowledge about Down’s syndrome—a deficiency that affected their ability to discuss the condition in counseling sessions; this finding, too, contributes to what Thomas calls Down’s syndrome’s “black box” status in screening consultations. In the end, Thomas compellingly argues, the invisibility of Down’s syndrome in consultations is yet another factor contributing to the widespread normalization of prenatal screening.
Down’s Syndrome Screening and Reproductive Politics provides an important analysis of how professional and organizational factors at the interactional level contribute to the routinization of prenatal screening. More information on how representative these prenatal clinics are in the UK, as well as how much the specific findings from this study are generalizable to other settings where different health professionals provide prenatal counseling, would have been helpful for contextualizing Thomas’s rich findings.
Since the time Thomas conducted the fieldwork for this book, further transformations in prenatal screening have been introduced into prenatal care, such as with the rapid introduction of non-invasive prenatal genetic testing (NIPT) in just the last half decade. As a much more accurate screen, NIPT is poised to bring to the fore many of the issues raised in this book. While Thomas is able only to address this development in his concluding chapter, the emergent landscape of prenatal screening underscores how researchers must take this book as a formidable launching pad for future studies.
In the end, Down’s Syndrome Screening and Reproductive Politics is a valuable sociological addition to the literature on prenatal screenings and should be of interest to scholars of reproduction and disability, as well as medical sociologists more generally, particularly those who study medical professionals. By highlighting providers’ concerns and ambivalences, Thomas contributes an important understanding of how social actors and health care organizations influence the potent processes of medicalization and geneticization—processes that show no signs of abating in the twenty-first century.