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Inescapable Burden of Choice?
The impact of a culture of prenatal screening on women's experiences of pregnancy
Sarah Donovan
School of Social and Cultural Studies, Victoria University of Wellington, New Zealand
Abstract
Drawing on research in progress, this paper examines the costs for pregnant women of trends towards routine screening in pregnancy. In particular, the notion that the array of choices contingent with prenatal screening may constitute an unwelcome ethical burden for pregnant women will be considered, as well as the extent to which women are able to give free and informed consent for screening.
The development of new technologies in the area of reproductive health, including new tests to detect fetal abnormality during pregnancy, has triggered considerable ethical debate about the possible benefits and dangers of such screening. While such debate has tended to focus on the value of the individual technologies themselves, the ethics of how the technologies are implemented, of how the encounter between lay people and biotechnology is best to be conducted, have received comparatively little attention.
This is particularly true in the case of prenatal ultrasound, a technology which has increasingly become part of routine prenatal care for the majority of pregnant women. This discussion will consider whether such screening may contribute to an ideological climate in which it may no longer be possible to experience pregnancy as a 'normal' embodied state. As an area of concern identified by participants in this research, the issue of informed consent for prenatal screening will be a key focus, including a brief case study highlighting one participant's experience.
Keywords
prenatal screening, pregnant embodiment, choice, ethics, informed consent
Article Text
The impact of screening on women's experience of pregnancy: Theoretical perspectives
The notion of 'pregnant embodiment' as a unique and complex subjectivity is a key theme in the work of feminist theorists of embodiment (eg Young 2005, Shildrick 1997, 1998, 2004). Such perspectives consider the body as a site of multiple subjectivities, marked by a complex interplay between identities of self and other.
My research draws on the notion of pregnant embodiment to consider the ontological implications of prenatal screening, in particular the extent to which fetal ultrasound may 'disembody' women's experience on a number of levels. One of the ways this occurs is by compelling pregnant women to objectively assess the status of their pregnancies in terms of external variables, such as risk, and this will be further explored shortly.
The idea that pregnant women occupy a unique ethical position within the context of contemporary maternity care practice has, over the last decade or so, received a good deal of sociological analysis in research focusing specifically on the phenomenon of prenatal screening itself (see Lippman 1994, 1999, Press and Browner 1995, 1997, Rapp 1988, 1998, Williams et al 2002, 2005). Curiously, however, to date social scientific analysis on the impact of screening on women's experience of pregnancy appears to have been largely ignored, both in terms of health policy and medical practice, and in bioethical debates on the value and appropriate implementation of screening technologies. Given the ongoing development of new screening technologies, and the expansion of their implementation into the realm of normal pregnancy care, the sociological and ethical concerns raised by prenatal screening are similarly rapidly evolving. The sheer novelty of the ethical dilemmas raised by new and potential forms of prenatal screening signals the necessity for social scientific research to give ongoing attention to the social or lived impact of such technologies. It is in response to such a concern for currency that I am undertaking a qualitative analysis of the experience of prenatal screening.
The study: Preliminary findings
Qualitative semi-structured interviews were undertaken with 20 women who had been pregnant in New Zealand within the last 20 years (this being the timeframe during which participants described being offered prenatal screening). The majority of participants were recruited through responding to a feature article on the research in a national newspaper. All interviews have been conducted but data analysis is yet to be completed. The aim of the fieldwork is to uncover participants' descriptions and understandings of their experiences around prenatal screening.
A key focus of the research is to examine the ways individual women experience and make sense of the choices they confront, if and when screening is offered. This includes decisions related to the discovery of fetal abnormality, as well as the choice to decline screening altogether. In addition, lay understandings of the notion of 'ethics', and how people make ethical decisions within the context of pregnancy, will be explored. This includes beliefs around the value and regulation of prenatal screening, and the question of whom in society should take responsibility for ethical governance of such technologies.
Conclusion
What might be done to address this issue and to improve women's experience of prenatal screening as a now largely unavoidable medical encounter? As diagnostic capabilities expand, there is no doubt that women will be confronted with an ever increasing array of options during their pregnancies. For such choices to be meaningful, and for the notion of informed consent to exist as anything more than an empty principle, a shift is required in ethical thinking which acknowledges the social impact of screening and the multiple ways this connects with the embodied subjectivity of pregnancy.
For maternity care practitioners such as midwives, who are philosophically aligned with the promotion of low-intervention pregnancy and birth, questions around the value of routine prenatal screening for healthy women will no doubt continue to be debated. However, given that prenatal screening appears to be here to stay, and given the negative impact on women of the ad hoc provision highlighted by the New Zealand study, what practical changes can be made to improve the situation?
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