The WRISK project regularly asks contributors to share their perspectives on a range of issues related to risk communication in pregnancy to further understanding of the challenges faced by scientists, clinicians, policy makers, and of course women themselves when trying to navigate risk messaging. These represent individual and personal viewpoints, and are aimed at encouraging reflection and discussion, rather than reaching conclusions.
Rachel Arkell is a Research Associate at the bpas Centre for Reproductive Research and Communication. To date, her research has largely focused on the legal and ethical implications of the use of biomarkers for establishing prenatal alcohol exposure. Rachel is also an SENSS funded socio-legal post graduate student. Her research centres on the communication of risk to (potentially) pregnant women, post Montgomery, and it focuses on informed consent and medication. Here she provides her views on NICE’s Draft Quality Standards on FASD, published last month. Rachel tweets at @R_Arkell.
In May 2019, the National Institute for Health and Care Excellence (NICE) announced their intention to develop Quality Standards on fetal alcohol disorders. The announcement was made both in response to mounting pressure from advocacy groups for more adequate services for those with neurodevelopmental disorders, and in the wake of the first UK guidance – SIGN 156: Children and young people exposed prenatally to alcohol (2019) – which covers both the diagnosis of fetal alcohol spectrum disorders (FASD), and crucially, sees a drastic redefinition of what pregnant women can expect as part of their ‘routine antenatal healthcare’. Though more support for those diagnosed is of utmost importance, we must be wary of the potential adverse impact such Quality Standards, while well-intentioned, could have on the care of women.
Though more support for those diagnosed is of utmost importance, we must be wary of the potential adverse impact such Quality Standards, while well-intentioned, could have on the care of women.
A key feature of both the Draft Quality Standards and SIGN 156 policy documents is a call for extensive screening of all women’s alcohol consumption and histories, with mandatory recording throughout their antenatal appointments – regardless of amount of alcohol consumed. Once her child is born, this information will be recorded into every child’s heath record, including maternity birth notifications, the “Red Book”, and the child’s electronic care summary record. While some CCGs have been routinely recording and transferring such information from as early as 2016, this approach is far from commonplace. The publication of SIGN 156 and the Draft Quality Standards mark the first nationwide attempts at embedding alcohol screening practices into policy and routine practice, despite such measures being repeatedly rejected by the UK National Screening Committee.
Both documents maintain that a definitive recording of prenatal alcohol exposure (PAE) presents the biggest hurdle to making an FASD diagnosis. It is easy to see how such a proposal could become a persuasive to embed within policy, but in order to be persuaded you must also believe that any amount of alcohol will lead to harm, and that women are not to be trusted in making decisions concerning their behaviour in pregnancy.
These Draft Quality Standards unequivocally endorse the precautionary approach as championed by the previous UK Chief Medical Officer, whereby the ‘safest level of alcohol consumption is no consumption at all’. This approach is reflected within the Draft Quality Standards in the expansion of the criteria to establish PAE. This criteria is to be used by healthcare professionals (HCPs) in recommending a child for assessment, leading to a possible diagnosis. To be consistent with the UK CMO’s message, these documents have not included a threshold, below which, maternal alcohol consumption will not be recorded. Under these standards, any amount of alcohol is deemed to put a child at risk of neurological impairment. Most strikingly, this removal of a lower threshold, which is included in SIGN 156, has been revised from the Canadian Guidelines for Diagnosis which sets confirmation of PAE at “the estimated dose at a level known to be associated with neurodevelopmental effects.”
Policy documents, including NICE Quality Standards, should be based on the best available evidence, which in this case means acknowledging the paucity of evidence. Arguably, current guidance adopts the precautionary approach not because of evidence of harm cause by low levels of drinking in pregnancy, but rather, because harm cannot be categorically be ruled out. At a policy level, we need to trust women in their abilities to understand the relevant evidence, or lack thereof, and make their own decisions about their pregnancy. We also need to ensure that women and HCPs alike are risk-literate more broadly. However, what we’re seeing is an institutionalised response of mistrust in women’s agency and their ability to be honest with their HCPs.
At a policy level, we need to trust women in their abilities to understand the relevant evidence, or lack thereof, and make their own decisions about their pregnancy.
Increasingly, we are seeing the transformation of ‘guidance’ into ‘mandate’, and this mistrust being operationalised through active surveillance, including through the use of biotechnology. Such measures are being incorporated into ‘routine antenatal healthcare’ under the guise of ‘necessity’ and assumed ethical permissibility. We have seen this in the introduction of carbon monoxide monitoring, despite women being asked whether they smoke during antenatal appointments. In relation to alcohol consumption during pregnancy, we are seeing this approach operationalised through the quest to find an ‘objective biomarker’ to screen for PAE, as included in recommendations for further research (SIGN, 2019) to aid in eliciting ‘accurate’ maternal alcohol histories. Presumably the use of biomarkers would sit alongside the use of validated screening tools (such as TWEAK and AUDIT-C questionnaires) and the recording of more intrusive information, without clear information regarding any robust ethical assessments, which should have taken place, nor details of any informed consent practices which would need to be involved.
One effect of these developments is to fundamentally undermine the information women provide through self-reporting, thereby adding to the wider mistrust of their ability to make decisions during their pregnancies. This can have serious implications for relationships of trust between women and their HCPs. We know that HCPs are increasingly burdened with structural limitations in how best to serve their patients – particularly in the realm of public health messaging. Rather than enabling HCPs to be free in tailoring their advice and support surround alcohol consumption during pregnancy, in line with women’s individual needs and preferences, such Quality Standards work to impose a prescriptive standard which could compromise the ability to have individual health concerns met.
A further effect is to risk the overall aim of these measures: ensuring that women who are in want and need of support with alcohol use during pregnancy can access confidential support and advice. If a woman is unable to have a discussion with her midwife without the findings being transferred to her child’s medical records, it is likely many women will not seek the help they need through engaging with healthcare services. Mandatory recording and sharing of this information not only adds to the stigmatisation of already marginalised groups of women, it risks further stigmatisation in future relationships with more HCPs. It is important to consider the impact such information could have on relationships, if ‘confirmed PAE’ – with or without any meaningful quantification – is the first information a health visitor learns of a child and their mother, how could their relationship be affected?
Children who have been affected by their mothers’ alcohol consumption in pregnancy deserve good care and pathways to needed support. These standards are likely to achieve the opposite of what they set out to achieve.