“Simply providing information”: Negotiating the ethical dilemmas of obstetric ultrasound,prenatal testing and selective termination of pregnancy

Abstract

Obstetric ultrasound is key to opposing ways of valuing foetuses, that is, both to the ascription of foetal personhood and to foetal selection and termination of pregnancy. Whilst ultrasound images are increasingly common within the public sphere there has been relatively little public discussion of its role in identifying actual or potential foetal anomaly and the consequences of this. This paper examines how professionals working with obstetric ultrasound encounter, navigate and make sense of the different uses of this technology. Professionals commonly delineate their work (as providing information) from women’s autonomous choices. Emphasising “women’s choice” can obscure consideration of different collective ways of valuing foetuses with anomalies. It can also deflect consideration of the fundamentally ambiguous information that ultrasound can produce. Distinguishing information from choice is underpinned by a questionable fact–value distinction. We describe alternate professional practices which involve questioning these binaries and foregrounding clinicians’ responsibilities for women’s current and future experience. Public discussion of ultrasound’s different roles in valuing foetuses would be enriched if the discourses and practices shaping professionals’ attempts to facilitate ethical decision-making were included for collective consideration.

Keywords

termination of pregnancy obstetric ultrasound population screening apparatus of choice patient autonomy

This is simply about providing information that allows women to make their own choices. (Brandon, clinician/researcher/guidelines)

The intersection of disability rights and reproductive rights is a busy crossroads. (Rapp, 2000, p. xi)

Visualising the foetus via obstetric ultrasound is an ordinary part of antenatal care for pregnant women in many parts of the world. As feminist scholars have shown, obstetric ultrasound has the potential to constitute “foetal life” in different ways. Visualising the foetus can be a means of bestowing personhood (Rapp, 1997), often happily in cases of Facebook pregnancy announcements or “baby’s first photo” (Berlant, 1994; Mitchell, 2001). Foetal personhood is, however, also actively mobilised in contemporary abortion politics in an attempt to constrain the terrain on which women contemplate the future of their pregnancies (Kelland & Macleod, 2015; Mills, 2014). Concurrently, ultrasound is a tool for appraising and differentiating foetuses and making decisions about termination of pregnancy (as is prenatal screening more broadly). Because previously unseen aspects of foetal development are revealed to medical scrutiny, ultrasound’s imaging of actual or potential foetal anomaly affords new reasons for terminating a pregnancy. People working with obstetric ultrasound, or involved with it during their pregnancies, can find themselves navigating these two potentially strongly opposing modes of engagement with foetuses. Rather than start with questions about the uses ultrasound should have, the broad question driving the research out of which this paper developed was: how are people already appropriating, rejecting or reworking these contradictions as they arise in their practices and encounters with technology?

In many countries, ultrasound (at 12 or 18–20 weeks, or both) is integral to a population-wide antenatal screening programme. The rationale underpinning population screening (not only during pregnancy, but for specific diseases, e.g. bowel or breast cancer, diabetes or TB) is one of secondary prevention: to identify latent or early signs of a disease so that preventative measures can be taken (Timmermans & Buchbinder, 2012). Rarely, the foetal anomalies identified via ultrasound can be prevented via (often risky) treatment in utero; some cannot be treated but their identification in pregnancy can afford decisions about later treatment (e.g. cleft palate) or decisions about prevention by terminating the pregnancy. Abortion rates vary with the anomaly and country. National Australian data about termination of wanted pregnancies are not collected; however, a study in Western Australia identified that, between 1980 and 2013, a stable rate of 93% of pregnancies involving foetuses with Down syndrome ended with abortion (Maxwell, Bower, & O’Leary, 2015). In the United States, a systematic review (1995–2011) of rates of termination of pregnancy following prenatal diagnosis of Down syndrome identified a variance in the findings of populations studies, between 61 and 93% (Natoli, Ackerman, McDermott, & Edwards, 2012).

Partly because public discussion of abortion for reasons pertaining to foetal anomaly can invoke a distinction between “women’s choice” and a “good society” (Lee, 2000), the role of ultrasound in prenatal screening has garnered considerable feminist attention. As Taylor (2008, p. 23, emphasis in original) argues, ultrasound is central to what she calls the “prenatal paradox”: pregnancy is being understood as increasingly tentative (Rothman, 1994) “at the same time and through the same means as [pregnancy] comes to be seen as an absolute and unconditional relationship, and the foetus as a person from the earliest stages of development”.

Anthropological and sociological research demonstrates that the diverse appropriations of reproductive technologies in different countries need to be understood as embedded in culturally distinct meanings of practices pertaining to reproduction and science. So-called lay people’s meanings are shared or navigated by health professionals and embedded in professional practices developed to offer care to “their” patients (Gammeltoft, 2008; Gammeltoft, Tran Minh, Nguyen Thi, & Nguyen Thi Thuy, 2008; Gammeltoft & Wahlberg, 2014; Ivry, 2006, 2007; Raz, 2015; Stevens, 2013; Vassy, Rosman, & Rousseau, 2014; Ville & Mirlesse, 2015). Public discussion of the ways that reproductive technologies might challenge, rework or transform our understandings of foetal and human life is precipitated sporadically by the introduction of new techniques and tools (often with specialised applications, such as Pre-Implantation Genetic Diagnosis, or embryonic stem cell research (Roberts & Franklin, 2006)).

Ultrasound is different from most reproductive technologies. Although technologically complex, it is classed as non-invasive, typically seen as involving minimal risk and often routinely offered to all pregnant women. Further, ultrasound images have their own social lives beyond the clinic – they are shared, displayed and enjoyed in a way that other medical information is not (Lupton, 2012, 2013). The ultrasound image’s ubiquity may be partly why its role in contradictory ways of valuing foetuses has garnered relatively little public attention and this absence has contributed to what Löwy (2014, p. 7) identifies as the “paradoxical invisibility of the visible foetus”.

Here, we ask how the understandings and practices of professionals involved in obstetric ultrasound either lend themselves to or limit possibilities for collective public discussion of ultrasound’s role in constituting and reworking different concerns and modes of valuing foetuses. In particular, we examine how ultrasound figures in the ethical valuation of foetuses by those who are using it in a professional capacity, i.e. those who are using it to provide clinical care to pregnant women, to do research for future populations of pregnant women, or who are involved in developing guidelines and practice. We consider how these practitioners understand and conduct their work as it extends, expands or transforms collective and contested notions of foetal life, and how they navigate the incongruities entailed in visualising foetuses. Our analysis focuses on how ethical questions about termination of pregnancy for reasons pertaining to anomaly are obscured and avoided in the context of the ultrasound clinic.

At least in the Australian context, there is general acceptance of the possibility and acceptability of terminating a pregnancy following the identification of foetal anomaly, and some aspects of this possibility are certainly discussed in the obstetric ultrasound clinic. However, ethical issues that might be involved in considering foetal futures are commonly understood as a private issue for a woman or couple to deliberate and decide upon, and not a professional dilemma. Whilst an emphasis on choice is clearly vital in clinical practice (for allowing pregnant women and their partners to feel like they are not being swayed by health professionals in the process of decision-making about the future of a pregnancy), we argue that it also functions to obscure ultrasound’s role in shaping disparate collective ideas about foetal life. That is, the deployment of “women’s choice” can isolate the clinical space from its wider social context. It can also obfuscate an inherent tension in the development of population screening: pregnant women attending the ultrasound clinic can be simultaneously positioned as autonomous, individual patients and as members of the population required to develop rigorous and useful screening tools, the benefits of which can be collectively deemed to outweigh the costs. In short, health professionals’ emphasis on “women’s choice”, which is a central aspect of what we describe below and elsewhere as “the apparatus of choice” (Mills, 2016), actually works to justify the relative absence of collective discussion around ultrasound and termination of pregnancies. In light of this, we also consider some attempts on the part of professionals to contest this lack of discussion by simultaneously affirming women’s fundamental right to make choices about their pregnancies and challenging the notion of information provision which underpins the divide between clinical and social domains.

The study

Context

In Australia, where our research was conducted, the 18–20-week morphology scan is routinely offered to all pregnant women – in accordance with Commonwealth Department of Health and Aging antenatal care guidelines (Australian Health Ministers’ Advisory Council, 2012), as well as professional guidelines for Australian doctors. The 12-week scan is being “routinised”, meaning that although the Commonwealth guidelines (2012) do not recommend nuchal screening for all pregnant women, The Royal Australian and New Zealand College of Obstetricians and Gynaecologists does, as do some public maternity hospitals and many general practitioners (who play a key role in linking women to pregnancy care in the early weeks). Notably, the current expansion of 12-week scans in Australia has less to do with government guidelines and more to do with developments in the industry and professions. The professionals we interviewed all described government guidelines as important for delineating a baseline level of care that should be offered to all pregnant women, including women in remote rural areas, and of little relevance for guiding specialist clinics spearheading obstetric ultrasound services. As Brandon, a specialist obstetrician who undertakes research and is also involved in developing guidelines for professional bodies saw it, it is “up to us [specialists] to actually change what’s happening at the ground level and then the guidelines will follow eventually”. This means that a potential focal point for public discussion about ultrasound – in the form of national or state policy development and ratification that recommends routinisation of the 12-week scan – has not arisen in Australia, unlike in countries such as Denmark or the UK (Schwennesen, Nordahl Svendsen, & Koch, 2010).

A second aspect of the Australian setting to note is that abortion legislation differs with each state or territory. It ranges from being decriminalised and available without gestational limit (in the Australian Capital Territory), to the Northern Territory, where abortion is possible prior to 14 weeks’ gestation with the approval of two medical practitioners and up to 23 weeks where there is a serious risk to a woman’s health or a diagnosis of a serious foetal abnormality. The two states where most of our interviewees were working (although several had experience of other jurisdictions) were Victoria and New South Wales (NSW). In Victoria, since 2008, termination of pregnancy is available on request up to 24 weeks and, after that point, with the approval of two medical practitioners who consider the request in the light of social, psychological and physical issues affecting a woman’s life. In NSW, abortion falls under the Crimes Act 1900, but since 1971 a series of rulings have meant that termination of pregnancy is legal where there are threats to a woman’s well-being, which is understood to include social and economic as well as mental and physical well-being, both during and after the pregnancy. However, as McCulloch and Weatherall (2017) argue, the fact that abortion is still criminalised (as it is in four of Australia’s eight states and territories) means that abortion access is open to legislative and political contestation. For instance, during the time frame of the research there was an attempt to pass legislation in NSW that would ascribe personhood to foetuses after 20 weeks, with the potential to make access to abortion after this point impossible. The third version of the bill has lapsed.

Approach

After mapping the public and private provision of obstetric ultrasound, the principal author undertook observation in one large public maternity hospital and a private clinic, talking to staff and observing and audio recording “routine” scans (12-week nuchal scans and 18–20-week morphology scans, 19 in total). Subsequently, interviews were conducted with three sets of people involved in obstetric ultrasound care. First, pregnant women (26) were interviewed soon after a 12- or 18–20-week scan (Stephenson, McLeod, & Mills, 2016). Second, we interviewed obstetric sonographers (15). Third, and the focus of this paper, specialist obstetricians, obstetric ultrasound researchers, genetic counsellors, professionals involved in ultrasound guideline development and disability advocates were interviewed (15). Of this third group of professionals, 13 were involved in clinical work (the two disability advocates being the exceptions), seven were involved in research relating to obstetric care and five had experience of developing professional guidelines. Most interviewees had multiple roles with obstetric ultrasound with only three solely involved in clinical work. Ethical approval was granted by UNSW and Monash. The interview questions asked of this group of professionals were tailored in accordance with the interviewee’s role and specific work history. Broadly, interviewees were asked to discuss: their work with obstetric ultrasound, how changes in the use of the technology (or in professional guidelines or regulation) shaped their work, their intersections and communication with other professionals in the field, and their communication with pregnant women. In addition, they were asked to describe in detail specific instances in their work which might have caused them to reflect on the connections between ultrasound and the valuing of foetal life. Data presented here are anonymised; names, locations and some specific aspects of people’s roles and identities are either omitted or have been changed.

Initially, thematic coding was undertaken as a means of attending to the patterning of experience and the tensions and conflicts emerging both within the data and between the experiences being recounted by participants and our existing concerns and questions. Thus, coding was a means of immersing ourselves in the data as opposed to a mode of analysis in itself. Our analytic approach involves approaching experience as posing questions to be examined rather than casting experience as “evidence” (Scott, 1991; Stephenson & Papadopoulos, 2006). The question we focus on here pertained to a strong distinction, which arose in people's accounts of their work, between professionals as information providers on the one hand, and women as moral agents responsible for making choices in regards to their pregnancy care on the other. This distinction commonly functioned to sidestep potential contradictions in the valuing of foetuses, or to displace such challenges onto prospective parents. Rather than accept the “common sense” of this distinction, we treated it as a question to be studied, asking how it arises in people’s everyday working practices, and how is it being contested or reworked. Our concern is to avoid just critiquing the absence of discussion of the ethics of abortion from the outside, or simply recording the self-understanding of professionals. This means that, as well as provoking thought, the data are being used here to gain an understanding of how this distinction makes sense, or not, in relation to the daily realities of professionals’ work.

In the following analysis, we describe how professionals’ accounts of their roles as “simply providing information” function to designate important ethical issues emerging from ultrasound screening as women’s responsibility. However, some participants did describe encountering ethical questions in their work as information providers. For instance, it is not always possible to provide clear, meaningful information about the connection between an aspect of foetal anatomy that has been visualised and its implications for pregnancy outcomes. At times, people described being troubled by their role in conveying ambiguous information to prospective parents. We consider one reason why ambiguous foetal measurements arise. Ultrasound’s use is expanding to connect new measurements of foetal anatomy to efforts to screen populations for a wider range of adverse pregnancy outcomes. This means that pregnant women are simultaneously participating in scans as individuals attending antenatal care and as members of a population. Here, we discuss how the clinical emphasis on “women’s choice” does little to connect with the complexities of this dual positioning. We then turn to ways in which some professionals invoked the importance of moving beyond an “individual choice” framing of prenatal screening and testing, recognising both the need for collective public discussion, as well as the risks this could have in limiting access to abortion. Finally, we turn to a minority position amongst interviewees, which involved contesting the distinction between information and choice, and positioning professionals as responsible not simply for screening the foetus, but for the experience of pregnant women and mothers.

Valuing foetuses as women’s choice

Across the interviews there was an emphasis on the discourse of “women’s choice” as the defining feature and guiding principle of decisions about termination of pregnancy, including in the event of a diagnosis of foetal anomaly. In a sense, the discourse of choice in our data is not surprising given the liberal democratic context of the study, where there is a strong emphasis on individual choice in many domains of everyday life. Further, this consensus in regards to termination of pregnancy is consistent with bioethical principles that emphasise patient autonomy. However, we are concerned to examine the effects of this emphasis, and we deploy the notion of an “apparatus of choice” (Mills, 2016) to bring these to the fore. Drawing on Foucault’s conception of an apparatus, Mills proposes that the “apparatus of choice” describes a relatively cohesive and coherent amalgamation of material and discursive elements that shape but do not determine practice in a given context, the central and organising characteristic of which is the notion of individual choice. Here, we show how the emphasis on individual choice functions to ensure that relatively little attention is paid to the contradictory roles that ultrasound can have in establishing collective notions of foetal life. It can also detract from reflecting on the challenges of navigating the sometimes dual positioning of pregnant women as both autonomous patients making decisions about their antenatal care and as members of a population whose participation has a collective purpose and benefit.

The professionals we interviewed rarely explicitly discussed the intersections between their work and collective understandings of foetal life with their colleagues. Working in obstetric ultrasound would be difficult for people who held strong views against abortion per se, so there is self-selection. Some people did describe occasionally questioning for themselves the reasons particular people had for abortion – cleft palate arose as an example here, as did a case of a couple who chose to terminate a pregnancy following diagnosis of a missing hand and identification of the foetus as female (Mills, 2015). Most, however, cited no examples of occasions when decisions about termination of pregnancy had raised ethical questions for them. Both groups nearly always described decisions about termination of pregnancy as personal decisions for the women or couples involved, which did not affect people’s work (amongst the 15 sonographers we interviewed there were two exceptions to this, but none among the other professionals). Thus, professionals’ framing of foetal futures as a matter of “women’s choice” allowed them to hold that pregnancy terminations were not cause for professional reflection. As Brandon puts it:

Interviewer: Can you tell me about one time when that’s [an ethical dilemma of some sort] come up in a [professional] committee forum and how it’s been navigated?

Brandon: Not really. The people involved in the committees tend to be all pretty like-minded and we see this as all being about choice for women. And it’s nothing to do with what we personally consider appropriate or not appropriate. (Brandon, clinician/researcher/guidelines)

Hence, “women’s choice” was commonly deployed in a way that designated ethical questions about foetuses as questions for women to navigate and resolve, not professionals. For instance,

it’s a woman’s choice to seek a termination of pregnancy for whatever reason throughout pregnancy. So, in a way, there, there isn’t any debate and … It’s really taken it out of the legal arena [in this jurisdiction]. It’s now something that the patients choose but I don’t see it as an ethical issue really any longer, from my point of view. (Walter, clinician)

One effect of this is that women (understood as acting solo, or together with their partners) are cast as the agents responsible for these decisions. The responsibility of health professionals is then circumscribed to giving women as much accurate and clear information about their pregnancies as possible, so that the choices women (and partners) make are medically “informed”. The clinical emphasis on women’s choice problematically presumes that, given accurate clinical information and in the absence of direction on the part of the health professionals, women are “free” and informed enough to make a considered decision. Moreover, it releases health professionals from reflecting in a more collective way on the ambiguities of ultrasound and the ways in which foetal life is valued.

Professional emphasis on “women’s choice” in the domain of reproductive technologies has been interrogated previously by Rapp (2000) in her ethnographic research on amniocentesis in the 1990s. Rapp spent time with and interviewed clinicians, bench scientists, genetic counsellors and women undergoing amniocentesis in New York City. Professionals in the field saw themselves as giving women “choice”, but it was pregnant women who were grappling with the meaning and ethical implications of the use of reproductive technologies. This division of roles meant, Rapp argued, that pregnant women were becoming “moral pioneers” on the frontier of developments in reproductive technologies. However, unlike amniocentesis, ultrasound is largely offered routinely; it is not thought to be an invasive procedure and it does not involve a prolonged waiting period between the test and the provision of results. Women can choose to opt in or out of having routine scans. Yet, analysis of clinical conversations with UK and Hong Kong health professionals who strive to make these choices apparent to their patients suggests that sometimes women are being asked to assent to an expected appointment rather than make an informed choice about whether to participate in screening (Pilnick, 2008; Pilnick & Zayts, 2016). Furthermore, Williams’ (2006) research on obstetric ultrasound in the UK casts doubt on the reach of women’s “moral pioneering”, since routinised practices appear not to initiate much ethical deliberation.

At this point, we want to be clear about why we are posing the emphasis on “women’s choice” as a problem. We concur that decisions about the future of pregnancies are not decisions for health professionals; they are decisions for the potential parents. But are women and partners necessarily “freely” making these choices if health professionals simply give information without conveying their own ethical stance? People’s attempts to envisage potential futures for foetuses identified as having (or potentially having) a disability are constituted by collective ways of valuing foetal life and life with a disability (Gammeltoft & Wahlberg, 2014; Ivry, 2010). This valuing occurs, not just in disputes over the morality of abortion, but in everyday practices, e.g. in levels and modes of social support for families and people with disability, in shared histories of responding to disability and in the increasingly widespread use of medical technologies to detect foetal anomalies. Clearly, “the apparatus of choice” facilitates important aspects of the clinic’s functioning. However, it simultaneously functions to deflect consideration of ultrasound’s role in reworking or transforming collective understandings of foetuses.

There were significant exceptions to this common invocation of women’s choice. For example, Deanna – a clinician also involved in guideline development – explicitly argued that choices are made in contexts already shaped by the collective valuing of life with a range of potential or actual disabilities:

[people’s reasons for terminating a pregnancy can be] very spurious … missing a couple of fingers or a short bone, or, you know, things that I think that’s not what we should be offering women or saying that that’s an okay thing. So ‘women’s choice’, you know, it’s not fair in those cases. It’s not actually a choice: it’s a societal decision around which children are okay and which children are not. (Deanna, clinician/guidelines)

Before turning to this contestation, however, we want to first consider the kind of ethical experiences that were described as arising in the field of obstetric ultrasound by practitioners. In particular, interviewees described the ethical ambiguity they encountered in the gap between the technical ability to visualise foetal anatomy and their clinical capacity to transform anatomical images into clear, meaningful information about a foetus for prospective parents. Further, we briefly discuss the perceived impact of the lack of public discussion on the roles of providers.

Ethical ambiguity between technical capacity and clinical interpretation

Visualising foetal anatomy is highly skilled work – the anatomy in question is often tiny and in motion. The authority to measure some aspects of foetal anatomy is tightly professionally regulated. In particular, to be a registered practitioner of nuchal fold measurements with the Fetal Medicine Foundation, sonographers working in Australia must submit examples of their measurements annually for evaluation. These measurements are then scrutinised to check that a normal rate of “high-risk” pregnancies is being identified. However, even with skilled use of the best technology, perfectly clear images can be elusive. In addition, interpreting images is not always straightforward, and interviewees described this as a significant challenge for them. For instance,

…the negatives [to obstetric ultrasound] are you’re finding information that you can’t necessarily interpret. So, (a) you’re making people anxious and you’re not necessarily being able to give them a huge amount of information and, and, secondly, you’re often creating more work for yourself because then you’re having or they’re having more testing…. It’s revenue-generating. (Emily, genetic counsellor)

Sonography’s “grey” comes in the form of soft markers and anatomical measurements which may or may not be associated with anomaly. On this, Ben, a clinician, described the cost of developing knowledge about the diagnosis of Dandy–Walker syndrome. Ten years prior, Ben explained, some decisions to terminate a pregnancy had been based on information that would today be more nuanced, and may not result in the same decision:

So we could always see these [brain] hemispheres really clearly but, if there was a sort of a gap in here, we called it ‘hypoplasia of the vermis’ which is Dandy-Walker malformation, in simplistic terms. So babies were being terminated for that condition and then probably between five and ten years ago someone … said that, when there’s this gap here, it’s not always [‘hypoplasia of the vermis’]. It can be this thing called a Blake’s Pouch Cyst, which is just where a bit of fluid pushes into that space and it sorts itself out later. So it’s sort of a, a slight variation in development but not a structural abnormality. And then we started looking at it more carefully both on ultrasound [and foetal MRI] – and this person sort of defined a way for deciding which it was. And so we became aware that, in fact, probably some of those babies that we’ve terminated over the years didn’t have such a terrible condition. (Ben, clinician/guidelines)

Ben’s allusion to “the babies that we’ve terminated” seems to put clinicians, ultrasound technology and researchers in the frame of decisions around termination of pregnancy. This is an indication that from his perspective there has been more than “women’s choice” entailed in the historical development of ultrasound’s uses.

Others, perhaps because they are speaking about the current state of the art, do not convey this “we” of the decisions instigated by ambiguous medical information. What they do strongly convey is a concern about negatively transforming people’s experiences of pregnancy and parenting. As Quinn, a practitioner/researcher with experience of guideline development, describes it:

What’s an example? If the baby doesn’t have part of its corpus callosum, which is the middle of the brain, we sort of historically know that a third will have a normal outcome, a third will have mild neuro-developmental problem and a third will have a serious developmental outcome. Very poor prognosis in that third. So 30 years ago we would never have made the diagnosis, so this would have just happened. But now women are faced with these decisions about, ‘What do I do with that information?’ you know … for many [women] it’s just, it’s just, it’s just a no win. (Quinn, practitioner/guidelines/researcher)

Interviewees described being bound to report details with such opaque meaning (for sonographers to report to doctors, and for doctors to report to women), whilst being aware of the predicaments they could lead to for pregnant women. As Wendy, a sonographer and researcher, explains:

Wendy: [we find] some things where we would often watch these pregnancies and sometimes we can say at a later stage in pregnancy that’s no longer an issue. It all looks fine. But there might be other issues that may mean that that patient is gonna look at their child for the first five years of its life and wonder if it’s developing appropriately, neuro-developmentally…There are grey areas, unfortunately. We wish that they were all clear-cut, a clear diagnosis of a missing arm … or a missing kidney. But, you know, the reality is, often [with] a lot of these other greyer areas we think, ‘Well what does that mean for the pregnancy? What does that mean for the, for the long-term health of that, that person?’ So very tough.

Interviewer: … the grey areas can lead to a lot of anxiety … is it worth having the grey areas?

Wendy: Well I think we unfortunately live in a litigious society. You know, medical litigation. (Wendy, sonographer/researcher)

This suggests that some practitioners felt that failing to report potential anomalies to parents could leave practitioners open to legal action, an anxiety that we surmise is related to a background context of medical negligence claims, and possibly “wrongful birth” legal cases in the UK and elsewhere (see e.g. Hassan, Chitty, & Reardon, 2014). Because of this, they commonly do report information, but encounter their limitations in being able to render it useful for prospective parents.

Screening populations, communicating with individuals

The initial rationale for health policies supporting the routinisation of ultrasound was population screening for select conditions with identified markers (e.g. Schwennesen et al., 2010). However, as with other screening programmes, we see here that screening can produce medical uncertainties for clinicians, uncertainties which call for research. This can mean that “[r]ather than playing a secondary role in the era of evidence-based medicine … the clinic re-emerges as a site of knowledge” (Timmermans & Buchbinder, 2012, p. 209). Continually measuring the grey across populations of pregnant women may, over time, enable the identification of new associations. This subsequently allows ultrasound to be used to detect a wider array of issues affecting the health of foetuses, newborns and women (e.g. Sweeting, Park, & Hyett, 2015). Currently, two related changes in the field mean that – as the frontiers of visualising foetal anatomy are expanding – the clinic is being placed at the forefront of new knowledge about maternal and foetal anatomy and, simultaneously, more uncertainty about what images are associated with normal pregnancies is being produced. First, better technology means that more is being visualised and at an earlier gestation and this demands the establishment and consolidation of population norms for new or potential markers. Second, Australians can now more easily access non-invasive prenatal testing (NIPT) in the form of a blood test. NIPT is being cast as a more accurate screening tool for Trisonomy 13, 18 and 21 (all of which are screened for in the nuchal scan combined with blood test) but is less likely to pick up other karyotype anomalies than the current 12-week scan (Petersen et al., 2014).

Together, these changes mean that there are some efforts to reposition the role and scope of the 12-week scan in prenatal care. In the leading clinics, more and more imaging is being done at 12 weeks, demanding more interpretation of relatively new measurements for which norms are in the making, and giving rise to more grey areas. This increased scanning at 12 weeks also has the capacity to turn more aspects of foetal anatomy and the pregnant body into what Verran (2011) calls “enumerated entities” whose values appear as naturalised through not only the capacity to measure them but through a prior process of being ordered into categories (in this case categories associated with different kinds of pregnancy outcomes). That is, measurements do not simply represent anatomy but are already involved in constituting its value (Adkins & Lury, 2011). Thus, the expansion of population screening hinges on the involvement of women who attend the clinic as part of their individual antenatal care. This means that clinicians have at least two different commitments to the pregnant women they see (as individuals and as members of a population), and aligning these interests can be challenging. Conveying information about ambiguous images and measurements back to individual pregnant women can provoke anxiety and radically transform people’s experience of pregnancy. For instance, Quinn foregrounds the problem of women’s experience when he describes improvements in the number of diagnoses being made, in the counselling being offered, and in women’s better “awareness” of their choices, but concludes: “Are most … women better off? I’m not sure …. I think the answer ‘yes’ cheapens the difficulties that face the women in our settings … today compared to 30 years ago … it’s harder, yep” (Quinn, practitioner/ guidelines/researcher).

In summary, the ethical ambiguities that professionals raised in interviews as troubling their work were largely about the gap between the technical ability to image foetal anatomy and the professional capacity to attribute a clear meaning to images that clinicians could communicate back as “information about the pregnancy”. At the same time, this gap is central to the expansion of obstetric ultrasound via the establishment of more population norms and their association with diverse pregnancy outcomes, a research process that relies on the participation of populations of women. The professional framing of obstetric ultrasound as a question of “women’s choice” positions women attending the clinic as individual patients and offers little to help navigate the tension inherent in developing population-based screening programmes, which only come to benefit individuals through the participation of populations.

Relegating the ethics of termination of pregnancy to “women’s choice”

We now want to consider how the paucity of public discussion of foetal abnormality and termination of pregnancy was itself discussed by professionals: as a public or political problem impinging on their work. For some interviewees, the relative absence of public discussion of how foetal life is valued arose as an issue impacting interviewees’ professional capacity to deliver the best care to women. This has several dimensions. First, the absence of broader public discussion of prenatal care and abortion was loudly lamented because it means that prospective parents who find themselves having to consider what to do in light of actual or potential foetal anomalies have less background context than they may otherwise have. Simon (a practitioner) cast the silence around termination of pregnancy and foetal abnormality as “one of the sort of few taboos that are still in society”. Deanna (a clinician with involvement in developing guidelines) identified the need for “some sort of public discussion about what testing means” – a discussion that she thought could be initiated if women who had had pregnancy terminations because of foetal anomalies spoke publicly about it. Second, the lack of political and institutional attention to the connection between prenatal screening and abortion was described as creating problems for professionals in working the field: problems in the form of murky or unhelpful legislation and guidelines, absent policies or poor implementation of existing guidelines and policies (particularly around the provision of late term abortions). Envisaging legislative or policy change was hard as politicians are seen as avoiding “the issues of termination and pregnancy ‘cause they won’t get re-elected” (Ken, clinician/researcher). Equally, the prospect of supportive policy development was cast as bleak; such changes would demand resources which some saw as unlikely to go in the direction of women’s health.

Whilst lamenting the absence of public and political discussion, interviewees were also concerned that any interest beyond the clinic risked limiting women’s choice. For instance, there was concern that public discussion could lead to changes in legislation or practice that could ascribe rights to the foetus and close down options for women. (As indicated above, foetal personhood was a very pertinent issue in the form of a bill being presented and represented NSW during the time of the interviews.) So, there is a sense in which the absence of public discussion can be understood as protective of women’s choice, similarly to clinicians’ “neutrality”. The effect, however, is that the space for considering foetal futures is constituted as a “walled clinic” – protected from savage abortion debates but also from feeding into and being fed by collective discussions of foetal life and, further, of living with disability or of parenting children with disabilities.

Contesting the displacement of the ethics of termination of pregnancy in professional practice

At this point, we want to turn to the minority view mentioned previously. There were some notable interruptions to the framing of the absence of discussion of foetal life and abortion as a problem of the public or of politics. First, two participants described making concrete efforts to traverse the walled clinic; they saw themselves – through their professional experience – as having a particular responsibility to try to initiate public discussion by contacting or contributing to various media outlets. Second, and our focus here, some interviewees explicitly argued that emphasising “women’s choice” obscured the need for broader public discussion about the collective valuing of foetal life that shapes the selection of foetuses. (Again, also amongst the sonographers we interviewed three people explicitly reflected on some ethical conundrums associated with the expansion of screening and identified a need for public discussion about shifting collective understandings of abnormality and abortion.) Marina confronted the lacuna by questioning the notion of clinical practice that underpins it. She rejected the distinction, fundamental to “the apparatus of choice”, between clinicians who convey accurate information and pregnant women who deliberate and make decisions. She described navigating the flux of developing medical knowledge about populations, with an example of the relationship between a soft marker in the foetal heart and Down syndrome, explaining:

… there’s something called an echogenic intracardiac focus … a little spot inside the foetal heart, which is said to increase the Down syndrome risk. And the amount that it increases by varies between 1.5 and five, depending on who you refer to. A five-fold increase in Down syndrome risk is quite a lot. But we were seeing tonnes of echogenic intracardiac focuses and we were counselling patients every single day about it. ‘Don’t worry. It increases your risk.’ … then there was some literature around which said, ‘Well look, if you find it in isolation, it’s really not significant.’ I don’t speak to people anymore about echogenic intracardiac focuses [found in isolation]. After another series of meta-analysis, it’s no longer considered a significant risk factor for Down syndrome. And then a study came out at the end of last year that said, ‘Well no, you know, it’s got a 2.5-fold increase.’ And I just went [Makes gesture of frustration] … And I said to [colleagues in the clinic] ‘I am not increasing the Down syndrome risk with an echogenic focus’. (Marina, clinician)

Marina is a consultant in a shared practice where all strive to give common interpretations so that pregnant women get the same information no matter which staff member discusses their scan. This means that Marina’s sense-making has to be negotiated as part of a collegial consensus with other consultants. What Marina casts as central to these collective deliberations is not presenting the most accurate information as part of being at the cutting edge of scientific research. Rather, she emphasises shared skills in interpreting scientific findings in the light of people’s experiences of pregnancy:

…because the trick is not in finding stuff on an ultrasound: it’s what you make of what you find. And again we [in this clinic] are pushed and pulled when we’re trying to decide what [our] policies are … medico-legally, the safest thing for me to do is to sit down and have multiple conversations [about ‘grey’] every day…. [but if I do that] suddenly [women’s] perception of pregnancy as a normal event is gone and you cannot put it back. At all. Ever. … [Alternately] I should take some more responsibility on my shoulders and call it normal, even if there’s a chance that it might not be normal because I’m going to save 200 women getting post-natal depression for every one. (Marina, clinician)

Notably, Marina does position the women she counsels as part of a population; however, this is a population of women whose specific experiences in the clinic matter for their pregnancy outcomes, not simply the population required to establish norms for new measurements and images. In Marina’s view, the practice of ultrasound calls for “the art of medicine”, i.e. an attempt to engage with the potentially disparate and changeable valuing of foetuses that is central to the sense-making of foetal images that occurs in clinical interactions:

… And there is no set consensus over what’s okay and what’s not okay [in terms of foetal abnormality]. Where is your line in the sand? How does that inform your counselling? Where’s your patient’s line in the sand? How do you determine where that line is? That’s the art of medicine and not the science of medicine. And you can not think about these things and still do a perfectly good job, a perfectly acceptable job. (Marina, clinician)

Marina’s contestation of professional work as “information giving” is presented as an insistence that professionals have ethical positions (“your line in the sand”) that matter in clinical interactions. This mattering is not, in her account, about swaying women’s choices. Marina described, at length, her participation in different unfolding circumstances where people ultimately made decisions with which she both could and couldn’t fully concur from her own ethical standpoint. Professionals’ positions matter in the sense of simply being part of how an ethical problem is encountered and considered. Most significantly, Marina relates the work of knowing, navigating and developing an ethical stance on foetal anomalies and termination of pregnancy to her professional practices which directly contest the hegemonic framing of clinicians as responsible for information giving and women (and partners) as responsible for dealing with the ethical dilemmas entailed. Many interviewees registered concerns about how the information they gave about the grey of sonography led to difficulties for pregnant women who then had to make decisions about it. In contrast, Marina described interpreting the grey as part of the domain of her professional skill and responsibility: “the trick is … what you make of what you find” (emphasis added).

Conclusion

In this paper, we have examined how the relative absence of the public discussion of the role of ultrasound in abortion is encountered, reproduced and contested by professionals working in the field of obstetric ultrasound. We suggest that “the apparatus of choice” that is deployed in clinical practice functions to hold collective discussion of valuing foetuses at bay from the space of clinical decision-making. We do not want to conclude that the lacuna of public discussion is caused and can be countered by professional practice alone. The silence surrounding ultrasound and termination of pregnancy extends beyond this to termination of pregnancy more generally. It stems, Boltanski (2013) argues, from the fact that abortion brings to the fore two contradictory and dearly held notions about society. On the one hand, termination of pregnancy plays a role in the singularisation of humanity, i.e. the notion that we are each unique individuals with singular places in society. In Boltanski’s view, aborted foetuses commonly undergo no process of singularisation in contrast to those who are “engendered” by prospective parents subsequent to the discovery of a pregnancy, bringing them into systems of kinship. On the other, we aspire to being non-discriminatory societies, to the notion that all beings should be treated equally regardless of social status. Abortion is difficult to represent, Boltanski argues, because it demonstrates the incommensurable tension between selection and non-discrimination.

Professionals involved in obstetric ultrasound are keenly aware that many possibilities for collective consideration of the difficult decisions people make about pregnancies with foetal anomaly are foreclosed by ongoing, fraught abortion politics. Precipitating or contributing to public discussion about abortion for reasons of foetal anomaly is not simply a matter of professionals (or women) speaking publicly about it; we tracked the hostility in the public response (evident in online commentary) to some exceptional attempts by professionals to foster public discussion about aspects of prenatal screening in Australia. And the risk of public discussions leading to political attempts to problematically limit women’s choice is not imagined: from 2012 to 2015 one Australian state debated legislation that would have conferred foetal personhood after 20 weeks. That is, invoking “women’s choice” in the provision of obstetric ultrasound is an understandable tactic to protect the clinic from the politics of abortion.

However, our analysis suggests that “choice” is not a free-floating, generalised construct that professionals in the clinic reproduce by affirming women’s choice as a means of navigating their work. The “apparatus of choice” is produced in the regulation and provision of obstetric ultrasound and not only in the most obvious clinical practices of affirming women’s decision-making through cultivating professional neutrality. It is constructed, in part, through professionals’ practices of delineating their role as information providers from the role of prospective parents who “have” ethical dilemmas. This delineation means that although the difficult experiences that women encounter through the “grey” of sonography can be acknowledged by professionals, they are then bracketed off as part of the cost of delivering optimal care in the current medico-legal context. Women’s decision-making, and the reproductive technologies that provoke the need to “choose”, are then rendered hard to discuss or consider as ethical processes that shape the collective valuing of foetal life in the professional context. The distinction between information provision and “choosing” also assigns professionals the role of participating in more and more imaging of populations so that norms can be created, and knowledge about the imaging of anomalies can be developed for the benefit of future populations of pregnant women. Through its emphasis on the autonomy of pregnant women, the apparatus of choice enables clinicians to navigate the dual roles of developing population-based screening of healthy pregnancies (involving identifying potential anomalies and establishing new norms) and delivering what they see as the best possible care to their individual patients (Armstrong & Eborall, 2012).

At the same time, there are minority professional practices that reintroduce the question of ethical considerations over ultrasound’s role in shaping how we value foetuses with potential or actual anomaly. These practices entail acknowledging that medical information matters (Latour, 2004; Stengers, 2005) in the sense of being constitutive of ethics; these practices refuse an overly simplistic distinction between fact and value. This suggests that one piece of the struggle to have public discussion about ultrasound’s role in the valuing of foetal life pertains to professional practice. It also implies that the public discussion that is needed is not only about abortion or about the connections between valuing life with disability and the practical support available for people living with disabilities or their families or carers. Rather, the collective discussion would be enriched by including the ways that professional practices are shaped by research contexts, which segment the grey of ultrasound off as the price pregnant women are expected to pay for the benefit of developing clinical expertise for future populations. It would also be enriched by an understanding of how professionals navigate their responsibilities (sometimes in tension) to populations and to individuals, within the constraints of medico-legal contexts that accentuate their roles as “information providers”.

Footnotes

Acknowledgements

We are grateful to the professionals who generously shared their experiences and insights, and also to reviewers whose comments helped to shape the presentation of the argument in this paper. Catriona Macleod’s editorial input has been especially valuable.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The research for this article has been supported by funding from the Australian Research Council Discovery Projects Scheme (DP110100752).

Author Biographies

Niamh Stephenson is a Senior Lecturer in Social Science at the University of New South Wales, Australia. Her research examines the relationships between subjectivity, experience and social and political change as it pertains to health. She has co-authored Analysing Everyday Experience: Social Research and Political Change, Escape Routes: Control and Subversion in the 21^stCentury, and most recently, Socialising the Biomedical Turn in HIV Prevention. Her current research projects examine the routinisation of obstetric ultrasound, and the politics of public health interest in emerging infectious disease.

Catherine Mills is Associate Professor of Bioethics and the recipient of an Australian Research Council Future Fellowship in the Centre for Human Bioethics, Monash University. Her current research explores issues at the intersection of reproductive ethics, feminist philosophy and Continental philosophy. She is the author of Futures of Reproduction: Bioethics and Biopolitics and The Philosophy of Agamben. She is currently undertaking projects on obstetric ultrasound, prenatal testing and disability, and concepts of responsibility in reproductive ethics.

Kim McLeod is a Lecturer in Sociology in the School of Social Sciences at the University of Tasmania. Her research explores the production of health. Her work draws on the insights of post-structuralist thought and science and technology studies. Kim’s PhD was awarded in 2013 from the Centre for Health and Society at the University of Melbourne and showed how health is intimately connected to material life. She has held research and teaching positions at the University of Melbourne, Monash University, the University of Sydney, La Trobe University, the University of New South Wales and The Cancer Council Victoria.

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