Women as moral pioneers? Experiences of first trimester antenatal screening

Abstract

The implementation of innovative medical technologies can raise unprecedented ethical, legal and social dilemmas. This is particularly so in the area of antenatal screening, which is dominated by the language of risk and probabilities. Second trimester serum screening for Down's syndrome and neural tube defects has a well-established place in antenatal care. Increasingly, first trimester screening with biochemical and ultrasound markers is being proposed as advance on this, yielding higher detection rates of Down's syndrome at an earlier gestational age. This article explores the experiences of 14 women offered innovative first trimester screening, which takes place within the context of a detailed ultrasound scan. The study is set within the UK, where recent policy changes mean that the offer of screening for fetal anomalies, particularly Down's syndrome, will become a routine part of antenatal care and offered to all pregnant women.

This paper focuses on the significance of the scan in first trimester screening, and some of the potential dilemmas for women that can result from this. It then discusses the ways in which women made their decisions about screening, in particular, their work as ‘moral pioneers’. We found that the part played by the ultrasound scan in first trimester screening, particularly in relation to the higher-quality images now being obtained, has the potential to introduce new and novel ethical dilemmas for pregnant women. Although concerns have been raised about pregnant women viewing ultrasound scans as benign, many of the women reported having thought carefully through their own moral beliefs and values prior to screening. It seems that whatever other implications they may have, first trimester screening technologies will continue the tradition of pregnant women acting as ‘moral pioneers’ in increasingly complex settings.

Introduction

The implementation of innovative medical technologies (IMTs) can raise unprecedented ethical, legal and social dilemmas, particularly in the linked specialties of obstetrics and fetal medicine (Getz & Kirkengen, 2003). More generally, Fox (2000, p. 422) believes that recent advances in biomedicine and medical technologies lie at the heart of the uncertainty underpinning the recent Western development of bioethics:

…US bioethics implicitly deals with uncertainty—fraught questions of value, belief, and meaning that are as religious and metaphysical as they are medical and moral. What is life? What is death? When does a life begin? When does it end? What is a person? What is a child?… Is it better not to have been born at all than to have been born with a severe genetic defect? How vigorously should we intervene in the human condition to repair and improve ourselves? And when should we cease and desist?

Such uncertainty also manifests itself in the forms of classifications and diagnoses that IMTs generate, particularly in the area of genetics. As Webster (2002, p. 447) argues, these are, ‘more likely to depend on the language of risk and probabilities than the language of causality’. One major area where risk language predominates is that of antenatal care, specifically antenatal screening. Rapp's (1999) seminal work in this area highlights many of the dilemmas that pregnant women currently face within the predominant Western biomedical model of pregnancy, where choices and decisions are often based on uncertainty. She states:

…I came to think of the women who submitted to the discipline of a new reproductive technology in order to reap its biomedical benefits as moral pioneers. At once conscripts to techno-scientific regimes of quality control and normalisation, and explorers of the ethical territory its presence produces, contemporary pregnant women have become our moral philosophers of the private (1999, p. 306).

However, Rapp's work was based on traditional 2nd trimester antenatal screening and testing, particularly amniocentesis. This paper aims to build on her work by exploring some of the issues raised by women offered innovative first trimester (11–13 weeks gestation) maternal serum and nuchal translucency (NT) screening, which takes place within the context of a detailed ultrasound scan. Second trimester serum screening for Down's syndrome and neural tube defects has a well-established place in antenatal care. Increasingly, however, first trimester NT screening, particularly in combination with maternal serum screening with biochemical markers, is being proposed as an advance, yielding higher detection rates of Down's syndrome at an earlier gestational age (Spencer, Spencer, Power, Dawson, & Nicolaides, 2003). NT refers to the subcutaneous space between the skin and the cervical spine of the fetus, and an increased NT is associated with an increased risk of aneuploidy, particularly trisomies 21 (Down's syndrome), 18 (Edward's syndrome) and 13 (Pateau's syndrome). An increased NT is also associated with major defects of the heart and a wide range of skeletal dysplasias and genetic syndromes (Nicolaides, Heath, & Liao, 2000).

There is limited research on the experiences of women offered this innovative technology. Medical research has tended to concentrate on improving the specificity and sensitivity of NT screening, with ‘adequate training and rigorous audit’ being recommended (Nicolaides et al., 2000). Other research has focused on the experiences of practitioners offering first trimester screening, which included dilemmas about how much information to give women; how to enable women to make an informed choice in a context where lack of time and increasing routinisation mitigated against this; and specific ethical dilemmas relating to NT screening, such as the right of women to ‘know everything’, including details of soft markers of unknown significance, versus potentially increasing their anxiety (Williams, Alderson, & Farsides, 2002a). However, women's experiences of first trimester screening, and NT screening as a specific screen for Down's syndrome and other chromosomal disorders remains under explored (Green, 2003), and this paper begins to address that issue.

In the UK, there has traditionally been a wide variation regarding both who should be offered screening for Down's syndrome, and the method to be used. However, in 2003, the offer of screening for fetal anomalies, particularly Down's syndrome, became a routine part of antenatal care for the first time, to be offered to all pregnant women. Guidelines also stated that, ‘pregnant women should be offered screening for Down's syndrome with a policy that provides a minimum detection rate of 70% with a false-positive rate no greater than 5%’ (NICE, 2003, p. 72), indicating a potential move to first trimester screening technologies which achieve this greater level of accuracy. These are very significant shifts in policy, and our research project provided the opportunity to explore the possible consequences of such shifts, prior to widespread implementation. One aspect we wished to explore was whether, or to what extent, women in our innovative setting acted as ‘moral pioneers’, as ‘moral philosophers of the private’ (Rapp, 1999). It could be argued that the term ‘pioneer’, defined in the Oxford Dictionary as ‘original investigator of something’, may no longer be appropriate, as antenatal screening is now such an established part of pregnancy care. However, antenatal screening is constantly evolving, as are the technological advances which impact on it, including possible developments in fetal medicine and shifting notions of fetal viability, patienthood and personhood.

Returning to the work of Rapp (1999), she argues that:

…the construction and routinization of this technology is turning the women to whom it is offered into moral pioneers: situated on a research frontier of the expanding capacity for prenatal genetic diagnosis, they are forced to judge the quality of their own fetuses, making concrete and embodied decisions about the standards for entry into the human community (p. 3)…the women I was interviewing were enunciating a nuanced ethics of reproductive control’ (p. 307).

However, the women interviewed by Rapp represented a selected, high-risk population who, for a variety of reasons, might be more likely to address these ethical dilemmas. Firstly in order to achieve a definitive diagnosis, most of the women Rapp interviewed had chosen to undergo invasive diagnostic testing by amniocentesis, which in itself has a quoted miscarriage rate of about 1%, and is performed at about 16–18 weeks gestation. The majority of women were being tested because of their ‘advanced maternal age’, which is linked to a higher incidence of having a baby with Down's syndrome. These women had almost always seen a genetic counsellor prior to making a decision, so they had generally had the opportunity to reflect on these issues in a formal health setting. In contrast, the women in our innovative site were making decisions about accepting first trimester screening, a universally offered, earlier, non-invasive screening test in the context of what might be perceived as a ‘routine’ 12-week scan. This was in the knowledge that the most likely outcome would be a ‘low-risk’ result, and that the result obtained would not give a definitive diagnosis, merely a risk estimate. In view of these significant differences between the technologies and contexts, we questioned whether the women in our innovative site would, like the women in Rapp's study, be acting as ‘moral pioneers’, or whether the differences might mean that ethical dilemmas would not be particularly considered by women at this much earlier stage. This is an important question, particularly in view of the UK policy shifts highlighted above which mean that every pregnant woman will be confronted with antenatal screening choices, probably within the context of first trimester screening.