Down’s Syndrome Screening and Reproductive Politics: Care, Choice, and Disability in the Prenatal Clinic

Down’s Syndrome Screening and Reproductive Politics: Care, Choice, and Disability in the Prenatal Clinic. Gareth M. Thomas, London: Routledge, 2017, 199 pp.

Medical anthropologists and sociologists who study reproductive medicine and technologies frequently apply ethnographic and interview-based methods to examine the meanings, practices, networks, and articulations of clinicians, patients, and other interested parties. Gareth M. Thomas, in his new work, contributes to this growing body of literature by studying a technology that, he argues, has become routinized in obstetric care: prenatal screening for Down Syndrome (DS). (Please note that in the United Kingdom, the condition is referred to as “Down’s Syndrome,” whereas in the United States, it is known as “Down Syndrome.”)

Thomas conducted his study by observing consultations, immersing himself in departments, and interviewing professionals in two sites in the United Kingdom, one a publically funded teaching hospital and the other a private fertility clinic. Both offer prenatal screening in the form of blood tests or ultrasound scans. Thomas’s ethnographic method enables him to pay close attention to how DS screening is discussed, offered, practiced, avoided, or embraced at these two sites. Referencing Erving Goffman (1959), Thomas observes and reports on the frontstage and backstage behaviors of midwives, sonographers, and physicians. The information and demeanor presented frontstage by professionals in interactions with their patients is frequently at odds with what these workers say backstage to each other or directly to Thomas. As professionals, they aim to be nondirective and emphasize to the patients that it is entirely their own choice to be screened for DS, to follow up with a diagnostic amniocentesis, or to terminate a pregnancy. They are not always successful in achieving this goal. Privately, they express frustrations when they feel that patients do not take the unforeseen consequences of DS screening and diagnosis seriously enough. This discrepancy between frontstage and backstage underscores how the standards of their profession demand that they bracket their emotions and conceal their judgments.

Thomas highlights how these contradictions are embedded in the practice itself, whereby the organization of medicine contributes to what he refers to as the “downgrading” and “routinisation” of DS screening (p. 48). Screening is conducted by those who are further down the medical hierarchy than physicians: midwives (for blood tests) and sonographers (for ultrasounds). Midwives, Thomas observes, avoid conducting screenings because they regard them as “boring, repetitive, and hands-off work,” which does not conform to their idea of authentic midwifery or to what they were trained to do (p. 71).

Patients, lacking information about DS screening or its consequences, frequently consent to screening because, based in part on how it has been presented to them, they perceive it as part of routine prenatal care. When offered the opportunity to find out if they fall into a low- or a high-risk category, they typically take it. In addition, rather than treating an ultrasound as a serious medical consultation, Thomas observes it becoming a social kinship ritual in which parents-to-be “meet” their baby and begin to ascribe it with personality traits. Although health care professionals themselves contribute to the downgrading and routinization of DS screening, they express dismay when their patients, in turn, do not understand the gravity of screening, unaware that if they are placed into a high-risk category, a “can of worms” or a “minefield” may likely follow (p. 82). Standards of care demand, however, that professionals not attempt to sway their patients in any direction or offer advice or opinions.

Another inconsistency between frontstage and backstage is identified by Thomas in his chapter on professionals’ discourse regarding DS, in which the syndrome becomes “the elephant in the consultation room” (Chapter 5). During consultations, DS is primarily constructed as something for which a pregnant woman and/or her fetus (the two become conflated here) may be at risk, something to be avoided, an abnormality. The danger, then, is to be placed in the high-risk category, which means there is at least a 1:150 chance, if not higher, of having a child with DS. As midwives and sonographers convey to their patients, if pregnant women are placed in a high-risk category, they then have the option to have an amniocentesis for a definitive diagnosis. The chain of events (or can of worms) starts with the initial screening. However, if a pregnant woman opts for a DS screening, would she then want to have an amniocentesis if the results come back high risk? If she opts for the amniocentesis, and the fetus is diagnosed with DS or another condition, would she consider termination? With each step in the chain, the pregnant woman is asked to give her “informed choice,” but the stakes keep getting raised. And, according to Thomas, the stakes are inadequately described to the parents-to-be who are making these informed decisions.

Backstage, professionals speak positively about outcomes for individuals with DS, which is not considered a condition that is “incompatible with life” (p. 110). They worry about the eugenic implications of termination and even of screening itself. Frontstage, professionals breeze past discussions about the condition, its wide variability, or the quality of life for individuals with DS and their parents, perhaps assuming that their patients are already familiar with DS, or again not wanting to sway any decisions that their patients make. To what extent, however, does the absence and invisibility of DS in the consultation room—other than through the language of risk and abnormality—act as a kind of nondirective directive, particularly within a cultural context where mothers-to-be are guided toward taking all measures to have a perfect, healthy, and perfectly healthy child?

Down’s Syndrome Screening and Reproductive Politics contributes to conversations about selective reproduction and disability, and it would be useful to scholars and students of medical anthropology, medical sociology, science and technology studies, and disability studies. While site-specific, some of Thomas’s findings appear generalizable across the United Kingdom, shaped by the country’s organization of health care, funding, laws regarding abortion, modest public support for people with disabilities, and high rates of prenatal screening and post-diagnosis termination. The book is thus nicely set up to serve as a point of comparison with countries where those variables differ. Has DS screening become downgraded and routinized wherever and whenever the tests and scans are available? How does DS screening compare with other screenings and diagnostic tests, obstetric or otherwise? In his conclusion, Thomas raises the specter of other screenings that are coming down the diagnostic pipeline. Will they follow the same path as DS screening, steadily become integrated as routine care, or will clinicians and policymakers use this as an opportunity to engage in debate about screenings’ implications regarding informed choice, disability, and quality of life?

 

Reference Cited

Goffman, E. 1959. The Presentation of Self in Everyday Life. London: Allen Lane.