By Rachel Arkell.
In early March, the National Institute for Health and Care Excellence (NICE) launched the consultation period for the first draft of their Quality Standards on fetal alcohol spectrum disorders (FASD), which covers the assessment and diagnosis of those affected by FASD.
It is, of course, vital that diagnosis and support services are available for those who have been adversely affected by prenatal alcohol consumption. However, this draft Quality Standard is rooted in an assumption that any maternal alcohol consumption may be relevant in diagnosing FASD. It proposes mandatory screening of alcohol consumption at every antenatal appointment, with the information then recorded in the child’s health record.
This approach further embeds the precautionary principle into care, without due regard to the potential adverse impact on the care of women – an aspect which was not covered in NICE’s impact assessment.
Due to the ongoing COVID-19 pandemic, NICE took the decision to pause the consultation process. It relaunches for comment on 20th August 2020, with an expected publication date of January 2021.
An emerging policy framework
The primary source for the Draft Quality Standards is Guideline 156 on Children and Young People Exposed Prenatally to Alcohol, published by the Scottish Intercollegiate Guidelines Network (SIGN) in January 2019. Within a UK context, this document marked the first explicit inclusion of mandatory screening and recording of all women’s alcohol consumption during pregnancy and history, regardless of amount consumed. It calls for the subsequent transferral of this information into every child’s health record, including maternity birth notifications, the “Red Book”, and the child’s electronic care summary record. The leading rationale for this proposal, as covered in NICE’s impact assessment, is to ensure maternal alcohol information is readily available for all children – particularly those who are not with their birth mothers.
While some CCGs have been routinely recording and transferring such information from as early as 2016, this approach is far from commonplace but has now been formally adopted by NICE within the Draft Quality Standards. The publication of these documents marks the first nationwide attempt at embedding alcohol screening practices for all pregnant women, regardless of perceived risk, into policy and routine practice, despite such measures being repeatedly rejected by the UK National Screening Committee.
The proposals run the risk of falling foul of one of the first principles of screening: that the patient must give informed consent. Presenting the screening as part of ‘routine antenatal care’, with care measured by the proportion of appointments where alcohol consumption is recorded, glosses over these requirements. This is particularly troublesome given the significant data privacy questions which arise with the ‘mandatory’ transfer of information from the woman to the child’s health records. The Draft Standards do not engage with this, and the accompanying Equality Impact Assessment does not assess the impact on women at all.
The primary justifications for these significant invasions of maternal privacy are seemingly twofold. Both the NICE and SIGN documents maintain that a definitive recording of prenatal alcohol exposure (PAE) presents the biggest hurdle to making an FASD diagnosis, hence a desire to ensure that information is readily available for all children. However, both documents also drastically expand what is considered PAE by removing a lower threshold for alcohol consumption.
The Draft Quality Standard rejects the threshold in the Canadian Guidelines for Diagnosis, which defines PAE as “the estimated dose at a level known to be associated with neurodevelopmental effects”, choosing instead to assume that any maternal alcohol consumption puts a child at risk of FASD. This is, despite the paucity of evidence regarding the causal relationship between low to mid-level drinking in pregnancy and harm. Whilst a precautionary approach is in line with the Chief Medical Officer’s policy message of ‘abstinence only’, it is important to recall that this message was not given in light of any emerging evidence of harm, but rather the notion that women needed “simplicity” in messaging.
Ultimately this framework works to further embed institutional mistrust of women and pregnant persons in their ability to make decisions during pregnancy, and further transforms guidance into mandate.
A misplaced focus
Whilst the aims behind this proposal are undoubtedly laudable, the proposals fail to address pertinent questions about proportionality and utility. Available data points to a very small minority (2.9%) of women drinking more than one unit of alcohol per week during pregnancy. The rationale behind the proposals is, in part, a focus on ‘missing data’, with claims that services only have ‘complete’ data on alcohol consumption for 43.1% of women.
However, a screening programme requires action beyond simply the acquisition of information. To justify a screening programme, it must be proven that the data is useable in a way that is beneficial to those providing the information. Furthermore, the proposed measures must be proportional to reaching the desired action outcomes. There must be a proven benefit of the measures, and any potential harms must be clearly communicated to women as part of consent discussions.
By recording all levels of maternal alcohol consumption, even the very lowest, thousands of children could unduly be brought under the purview of the medical gaze through an ‘at risk’ designation. This could result in huge implications for both the individual (e.g. risking the relationships of trust which are vital to high quality maternity care) and at an institutional level (e.g. overwhelming services through a lack of meaningful quantification when recording alcohol information).
To date, the Draft Quality Standards have yet to be adequately examined from such an ethical or legal perspective. Such analysis is of utmost importance before any standards or policy on FASD are adopted.
Author: Rachel Arkell
Acknowledgements: A special thanks to Rebecca Brione, Rebecca Blaylock and Clare Murphy for their insight and contributions to this post.
Affiliations: bpas Centre for Reproductive Research and Communication and University of Kent
Competing interests: bpas has registered as a stakeholder for the NICE consultation and will be submitting comments.
Social media accounts of post author(s): @R_Arkell