Down's Syndrome Screening and Reproductive Politics Care, Choice, and Disability in the Prenatal Clinic
Nominated for the Foundation of Sociology of Health and Illness Book Prize 2018
In the UK and beyond, Down’s syndrome screening has become a universal programme in prenatal care. But why does screening persist, particularly in light of research that highlights pregnant women’s ambivalent and problematic experiences with it?
Drawing on an ethnography of Down’s syndrome screening in two UK clinics, Thomas explores how and why we are so invested in this practice and what effects this has on those involved. Informed by theoretical approaches that privilege the mundane and micro practices, discourses, materials, and rituals of everyday life, Down’s Syndrome Screening and Reproductive Politics describes the banal world of the clinic and, in particular, the professionals contained within it who are responsible for delivering this programme. In so doing, it illustrates how Down’s syndrome screening is ‘downgraded’ and subsequently stabilised as a ‘routine’ part of a pregnancy. Further, the book captures how this routinisation is deepened by a systematic, but subtle, framing of Down’s syndrome as a negative pregnancy outcome. By unpacking the complex relationships between professionals, parents, technology, policy, and clinical practice, Thomas identifies how and why screening is successfully routinised and how it is embroiled in both new and familiar debates surrounding pregnancy, ethics, choice, diagnosis, care, disability, and parenthood.
The book will appeal to academics, students, and professionals interested in medical sociology, medical anthropology, science and technology studies (STS), bioethics, genetics, and/or disability studies.
Chapter 1. Introduction
Chapter 2. A Short Socio-History
Chapter 3. Hands-Off Work
Chapter 4. The Conduct of Care
Chapter 5. Constituting Risk and Disability
Chapter 6. Expectant Parents, Expecting Perfection
Chapter 7. Summary and Discussion
'Gareth M. Thomas has produced a thoughtful, rich, nuanced presentation of the normalization of down syndrome screening, hoping to ‘ignite more reflexive and pluralistic dialogues.’ If only that would happen- that more people read, and thought, and spoke about what it means to introduce and make ordinary prenatal screening for more of these predictable conditions. It is an urgent conversation and Thomas has pushed it along in valuable ways'. Barbara Katz Rothman, City University of New York
‘This fascinating, timely, and highly original book presents a rich ethnographic study of Down's Syndrome (DS) screening in two hospital clinics. With a focus on the routine practices and daily work through which test procedures are managed, risk assessments are communicated, and moral responsibility is assigned, we see how DS screening is simultaneously framed as mundane, low status work and as important to the process of decision-making during a pregnancy. Social interactions between healthcare professionals and expectant parents are central to this process, alongside questions of classification and categorisation, material and spatial architecture, and dramaturgical identity performance. Drawing on medical sociology, symbolic interactionism, and ethnomethodology, Gareth Thomas presents a convincing and compelling argument about how the downgrading of DS screening is routinely accomplished through a network of power relations, discursive accounts, and everyday talk.’ - Susie Scott, University of Sussex
'Down's Syndrome Screening and Reproductive Politics takes the reader deep inside the "extraordinariness of ordinariness" to scrutinize how the professional practices of midwives and sonographers trivialize the tests pregnant women, and their supporters, have for this and other disabling conditions. Based on extensive sociological fieldwork in the U.K., this book provides a valuable analysis of the expert discourses that now inform contemporary reproductive politics, wherever prenatal testing is routinized.' Rayna Rapp, New York University and author of Testing Women, Testing the Foetus: The Social Impact of Amniocentesis in America
'In summary, Down's Syndrome Screening and Reproductive Politics is a clear, thoughtful and measured presentation of Thomas' research. He comes across as a measured researcher and is careful not to overstate his claims as he sets out to demonstrate that screening for Down's syndrome has become a routinised part of pregnancy, is downgraded by professionals in their daily practices and discourse, and that the condition is perceived as a negative pregnancy outcome. This is done succinctly and cogently and will be of interest to scholars and students interested in bioethics, medical sociology, genetics and the ongoing debates in reproductive ethics and politics.' Daniel Rodger, London South Bank University, Review in The New Bioethics