After Choice: FASD and the ‘managed woman’ (collaborative project)

This project takes policies, guidance and healthcare practices about Fetal Alcohol Spectrum Disorder (FASD) as its focus. It builds on previous research considering the ascendence of claims about the salience of the ‘precautionary principle’ for providing advice to women about alcohol and pregnancy.

See previous research:

This investigation considers the development and effects of what can be termed a ‘post choice’ context for maternity services, that has emerged as a result. In this context, the consumption of any alcohol at all, at any level, both before and during pregnancy, is assumed to be harmful, and the notion that women have a choice to make regarding this aspect of pregnancy behaviour no longer pertains.

The activities in the project comprise policy analysis and public dissemination of findings and arguments, to draw attention to the novelty of this form of healthcare policy and practice and raise questions about its rationale and implications.

The work is a collaboration between CPCS’ Professor Ellie Lee and staff in bpas’ Centre for Reproductive Research and Communication.

Conference presentations and papers

Lee, E. and Arkell, R. 2022. From self- to other- surveillance: a critical commentary on the English policy framework for Fetal Alcohol Spectrum Disorder (FASD) [Full article: From self- to other- surveillance: a critical commentary on the English policy framework for Fetal Alcohol Spectrum Disorder (FASD) (tandfonline.com)] 

Critical Public Health  

Abstract  

England now has a policy framework for Fetal Alcohol Spectrum Disorder (FASD). This proposes a suite of healthcare interventions, some of which attend to assessment and support for those who may be diagnosed with the disorder. Others, which are the focus of this commentary, have a stated goal of FASD prevention, to be achieved through embedding activities around alcohol abstention within maternity services and reproductive healthcare. Critical engagement with alcohol abstinence advocacy to pregnant women in this journal has linked this aspect of health promotion to larger debates about risk, moral panic, neoliberalism, self-surveillance, and forms of citizenship. The new English policies on FASD have, however, been the subject of relatively little academic engagement so far. In this commentary, after an initial summary of points from the relevant literature in Critical Public Health, we take public debate about the new English policy as our point of departure, highlighting the precautionary approach, the emphasis on monitoring, and contraceptive advocacy for at-risk women. We suggest an important shift in English policy, from presenting women as managers of risk via self-surveillance, to positioning them as in need of routine management and ‘other-surveillance’ within healthcare systems. This raises more general questions about the meaning of ‘autonomy’ and ‘support’ in healthcare.

Arkell, R. and Lee. E. 2022. ‘Using meconium to establish prenatal alcohol exposure in the UK: ethical, legal and social considerations

Journal of Medical Ethics

Abstract

An expanding policy framework aimed at monitoring alcohol consumption during pregnancy has emerged. The primary justification is prevention of harm from what is termed ‘prenatal alcohol exposure’ (PAE), by enabling more extensive diagnosis of the disability labelled fetal alcohol spectrum disorder (FASD). Here we focus on proposals to include biomarkers as a PAE ‘screening tool’, specifically those found in meconium (the first newborn excrement), which are discussed as an ‘objective’ measure of PAE.

We ask the overarching question, ‘Can routine screening of meconium to establish PAE be ethically or legally justified’, and we answer, ‘No’. To reach this conclusion, we discuss three areas. First, we consider the reasons why meconium screening should not be deemed ‘typical’ within the scope of accepted screening tools. We argue that given the aim and necessary timing of the screen, it cannot achieve what it promises. Second, we outline why patient autonomy and consent are not properly accounted for and cannot be reconciled with the ‘routinisation’ of the proposed ‘screening’. Last, we outline why the benefit of such a screen is not clear, focusing on the significance of trust in healthcare professionals (HCP) for the best interests of the future child and pregnant woman.

While recognising the adverse effects of heavy alcohol consumption during pregnancy, we emphasise the case for robust ethical, legal and social considerations and the central need for trust between HCP and patients in maternity care. We conclude the permissibility of meconium screening has not been proven, and it is not justified.

Accompanying blog: Alcohol and pregnancy: meconium screening cannot be justified.

Lee, E. Bristow, J. Arkell, R and Murphy. E 2021. ‘Beyond ‘the choice to drink’ in a UK guideline on FASD: the precautionary principle, pregnancy surveillance, and the managed woman

Health, Risk and Society (available open access)

Abstract

In many countries, official guidance promotes alcohol abstinence to women during, and also before, pregnancy, on the basis of concern about Foetal Alcohol Spectrum Disorder (FASD). Guidance has moved away from reference to a ‘choice to drink’, claiming absence of evidence about safety of even ‘low level’ drinking as a justification. Scholarship drawing on sociologies of risk and uncertainty has drawn attention to problems with precautionary thinking in this area of policy making, including for women’s autonomy. We build on these insights to assess a more recent type of UK guidance. This is directed not to women advising them to abstain, but instead it is about women, and tasks health professionals with managing the risk pregnant women’s behaviour is deemed to present.

Using qualitative discourse analysis, we assess one such example, developed in Scotland, called SIGN 156. We contextualise SIGN 156 first through discussion of the relevant literature, making particular use of Ruhl’s considerations of the meaning of risk and the social conditioning of choice, and second through an account of developments in UK Government advice in recent years. We show that SIGN 156 builds on a policy context where a precautionary approach is explicit, but we furthermore detail how this approach innovates the guidance and practice field. SIGN 156 expands the meaning of risk and uncertainty and so justifies ‘routine’ monitoring and screening, generating the case for an expanded form of surveillance of pregnant women. We conclude with a critical commentary on the implications of this case for analyses of risk and uncertainty, and power.

Arkell, R. Lee, E and Murphy. E. (2021) ‘Embedding mistrust: An exploration of the emerging UK policy frameworks on alcohol and pregnancy.’

UCL Qualitative Health Research Network Conference, Negotiating trust: exploring power, belief, truth, and knowledge in health care (pre-recorded presentation)

Abstract

Background: Due to the social and medical preoccupation with consumption of alcohol during pregnancy, public health policy has steadily sought to influence and shape maternal behaviour through increasingly coercive means. Throughout the last decade a clear policy framework aimed at addressing alcohol consumption during pregnancy has emerged. While institutional responses began with a ‘simplified’ message through the Chief Medical Officer’s guidance of abstinence only, the precautionary principle has since been further operationalised, leading to the introduction of mandatory screening to enforce ‘guidance’.

Aim/objectives: To explore the influence of prevailing attitudes towards maternal alcohol consumption in the treatment of evidence within relevant policy; to highlight the implications for pregnant women.

Methods: A document analysis, informed by socio-cultural theory, of the introduction of key policy documents; namely: UK Chief Medical Officers’ Low-Risk Alcohol Guidelines (2016); Scottish Intercollegiate Guidelines Network (SIGN) Guideline 156: Children and Young People Exposed Prenatally to Alcohol (2019); and National Institute for Health and Care Excellence (NICE) Draft Quality Standards on FASD (2020).

Results: Using a detailed exploration of ideas of risk, uncertainty and trust, we argue that policy documents, which facilitate action against any drinking in pregnancy, have relied upon the explicit removal of evidence relating to alcohol consumption and impaired foetal development from policy (SIGN 2019, NICE 2020), which legitimates the use of mandatory screening for alcohol under the guise of ‘routine antenatal care’. This transformation of guidance into mandate is hinged on a lack of trust in women’s ability to comprehend and act on the available evidence relating to alcohol consumption and harm.

Conclusions: Our analysis highlights the importance of socio-cultural theory in understanding both the feasibility of actual and proposed policy responses to alcohol consumption during pregnancy, and the potential implications of this framework for women– including an erosion of trust in relationships with healthcare practitioners.

Arkell, Lee, Murphy (2020) ‘After ‘the choice to drink’: The precautionary principle and the ‘managed woman’ in a UK guideline on alcohol and pregnancy.’

Workshop Presentation, Parenting and the State: State intervention in the age of the family.

Abstract

Through this century, official guidance on alcohol and pregnancy across the world has generally moved to promote alcohol abstinence to women during, and also before, pregnancy. In so doing it has reflected and has heightened concern with ‘low level drinking’ and has moved guidance away from any validation of a ‘choice to drink’. Scholarship drawing on sociologies of risk and uncertainty, gender, and parenting culture has criticised this development. It has drawn attention to the problems arising from incorporating ‘the precautionary principle’ into this area of policy making. In this article, we build on insights from this scholarship to assess a more recent type of guidance. This guidance is directed not to women advising them to abstain, but instead is directed to health professionals. It is about women, and tasks these professionals with managing the risk women’s behaviour is deemed to present to the children they give birth to if they drink at all, with children considered potentially affected by Fetal Alcohol Spectrum Disorders (FASD). We assess one example of Guidance of this sort, that in place in Scotland, called SIGN 156. Making particular use of Ruhl’s (1999) ideas about the meaning of risk and the social conditioning of choice, we consider the type of governance of pregnancy that emerges. We argue that since SIGN 156 is predicated on a context where ‘choice’ is deemed no longer relevant, the woman becomes considered an object of management, enacted in new ways. SIGN 156 innovates by expanding the meaning of risk and uncertainty via the precautionary principle and by justifying ‘routine’ monitoring and screening, thus generating a form of surveillance of pregnant women of a new type. We end the article with thoughts on what this development implies for explanations of risk and uncertainty.

Arkell. R. (2020) ‘An Unreliable Witness: pregnant women, alcohol, and the quest for biomarkers within a narrative of risk.’

Institute of Medical Ethics (IME) Conference, Maintaining Trust in Medicine in a “Post Truth” World [Postponed until July 2021 due to COVID-19]

Abstract

This paper will examine the contextual underpinnings of the recent recommendation for further research into the use of meconium for detecting prenatal alcohol exposure. Within existing fields of literature concerning alcohol and pregnancy, the narrative of risk in relation to prenatal alcohol exposure (PAE) and foetal alcohol spectrum disorders (FASD) has primarily concerned itself with public policy. Current analysis of emerging guidelines on maternal consumption point to an alignment with the ‘precautionary principle’, whereby a stance of complete abstinence is taken. This is most recently seen with the explicit removal of evidence pertaining to a threshold of consumption for the descriptor PAE within UK guidance (SIGN 156, 2019).

It would appear that these stances, and the dominant narrative of risk, are increasingly operationalised through the use of validated screening tools, such as TWEAK questionnaires. By their nature, the efficacy of such tools rely on the truthfulness of the answers provided, and this, in addition to prevalent claims of underreporting, appear to drive the consideration of biomarkers as a purely objective measure. To date, the vast majority of literature concerning the use of biomarkers has focused on efficacy as opposed to examining the widespread implications of acting on the aforementioned precepts in this way. This paper will therefore work to extend the sociological, ethical and legal approach currently taken in the analysis of public policy to the emerging use of such technology. It will work to uncover the reasons why its permissibility is assumed in relation to the narrative of risk in pregnancy, and highlight key considerations if a meconium screen for prenatal alcohol exposure were to be implemented within a UK context.

Arkell, R. (2019) ‘An Unreliable Witness: pregnant women, alcohol, and the quest for biomarkers within a narrative of risk.’

BSA Postgraduate Regional Event: Reproduction and Risk.

Abstract

This paper examines the contextual underpinnings of the recent recommendation for further research into the testing of meconium to determine maternal prenatal alcohol consumption. Within existing fields of literature concerning alcohol and pregnancy, the narrative of risk in relation to alcohol exposure and foetal alcohol spectrum disorders (FASD) has primarily concerned itself with public policy. Current analysis of national guidelines on maternal alcohol consumption point to an alignment with the ‘precautionary principle’, whereby a stance of complete abstinence is taken. It would appear that these policy decisions, and the dominant narrative of risk, are increasingly operationalised through the use of validated screening tools, such as TWEAK questionnaires. By their nature, self-reporting questionnaires are deemed to be subject to recall bias on the woman’s part, whether intentional or not. As such, there is a move towards the use of biomarkers as a more ‘objective measure’. To date, the vast majority of literature concerning the use of biomarkers has focused on efficacy as opposed to examining the widespread implications of acting on the aforementioned precepts in this way. This paper therefore works to extend the sociological, ethical and legal approach currently taken in the analysis of public policy to the emerging use of such technology. It will work to uncover why such tests are assumed to be ethically permissible in relation to the narrative of risk in pregnancy, and highlight key considerations if testing meconium for maternal prenatal alcohol exposure was to be implemented within the UK.

Additional reading (comment)

Arkell (2020) NICE Draft Quality Standards on FASD: A precautionary approach gone too far?WRISK Guest Blog

Arkell (2020) NICE Draft Quality Standards on FASD: A misplaced focus? Journal of Medical Ethics Blog

BPAS (2020) Briefing on NICE Draft Quality Standards on Foetal Alcohol Spectrum Disorder

Lee (2020) NICE’s proposal to record pregnant women’s alcohol consumption ignores potential detrimental effects

Romanis, Milne, Halliday, Cave (2020) Responding to Challenges in Diagnosing Fetal Alcohol Spectrum Disorder.

Durham Centre for Ethics and Law in the Life Sciences Blog

Woollard (2020) Should Alcohol Consumption During Pregnancy Be Recorded on the Child’s Health Record? Public Ethics: Expert Analysis of Ethical Issues in the News

Media comment

Rachel Arkell in discussion on the She Negotiates Podcast

Rachel Arkell writing in the Huffington Post

Prof Ellie Lee debating Dr Luisa Zuccolo on RT

Clare Murphy on Victoria Derbyshire, BBC TV

Clare Murphy on BBC Radio 4

Single drink in pregnancy will be noted on baby’s file’, in The Times

Plans to record pregnant women’s alcohol consumption in England criticised’, The Guardian