Luisa Zuccolo , MRC Integrative Epidemiology Unit and Department of Population Health Sciences, Bristol Medical School, University of Bristol

Cheryl McQuire, School for Public Health Research/Centre for Public Health and Department of Population Health Sciences, Bristol Medical School, University of Bristol

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What’s the issue?

Drinking alcohol during pregnancy continues to stir passionate and polarised reactions. The issue has once again come into sharp focus. In England, the National Institute for Health and Care Excellence (NICE) is proposing to measure all alcohol use in pregnancy and transfer this information to a child’s health records, without explicit agreement from the mother. The aim of the proposal is to ensure better diagnosis and support for those with lifelong conditions caused by drinking in pregnancy that can include problems with learning, behaviour and physical abnormalities, known as Fetal Alcohol Spectrum Disorders (FASDs). However, the NICE proposal has been met with strong opposition from some organisations, which say that this breaches pregnant women’s right to medical privacy.

A balancing act

Benefits of introducing the proposed FASD NICE Quality Standards

It’s important to remind ourselves why measuring and sharing information on drinking in pregnancy could be worthwhile, and who will benefit.

Information – the key to understanding

Official guidance recommends that it is safest not to drink at all during pregnancy, or when trying for a baby. But a quarter of people in the UK are not aware of this guidance and the UK has the fourth highest rate of drinking in pregnancy in the world. The new NICE quality standards propose to rectify this by making it compulsory for midwives (or other health care professionals) to have conversations about alcohol with pregnant women. The idea is to help women to make informed choices about drinking in pregnancy.

Information is in everyone’s interest. We still don’t know enough about the effects of different levels of alcohol use in pregnancy. This is a tricky area to study, in large part because we don’t have enough information. If we don’t measure, we can’t fully understand the effects of alcohol in pregnancy (not even to confirm whether small amounts are safe). This has been our area of research for a number of years, and it is important both because many pregnant women drink alcohol, and because they should have the right to be better informed. Current abstinence guidelines are largely (but not solely) based on the precautionary principle. Our research has provided some evidence that even low levels of use (two drinks a week or fewer) can have negative effects, including smaller babies and preterm birth. We need more information to find out about the full extent of these risks – including whether the risks are genuinely there – to ensure that women can make informed decisions based on the best possible evidence.

Diagnosing fetal alcohol spectrum disorders (FASD)

Fetal alcohol spectrum disorders are severely underdiagnosed. They are characterised by lifelong problems with learning, behaviour and, in some cases, physical abnormalities. Contrary to what many think, these are common disorders. Our recent research suggests that between 6 and 17% of children in the UK could have symptoms consistent with FASD. Without good information on exposure to alcohol in pregnancy, many of these children remain ‘invisible’ to services and do not get the support that they need.

Concerns about the Quality Standards

Despite the potential benefits of these proposals, there are several unresolved issues that need tackling urgently.

Stigma and trust

If women feel stigmatised, they might lie about their drinking, invalidating any data collection. If they can’t trust their healthcare providers, then we can’t trust the data – so what would be the point of collecting it?

Tradeoffs

What would women be offered, in exchange for volunteering this information? What’s in it for them? It would be unbalanced and probably unethical to request information about drinking in pregnancy, at the risk of stoking maternal anxiety, without explaining the reasons, or offering support if so desired. The treatment of pregnant women who smoke provides an appropriate model – information is recorded on antenatal notes, and support to quit is offered at the same time. We need to guarantee a non-judgmental and supportive approach to listening when it comes to alcohol too.

Confidentiality

Women should be able to opt out. For those opting in, it should be made clear that the same high levels of confidentiality will apply as are already in place for current information from maternity notes and child health records. These new data on alcohol use should be no different and must be covered by existing guarantees.

Finding the right balance

So, where is the balance between the benefits and risks of the proposed changes? We often talk about burdening pregnant women with anxieties, but we neglect to talk about the lifelong consequences of emotional and behavioural problems arising from exposure to alcohol in pregnancy – these pose real everyday challenges for families, for many years to come. If on the one hand, maternal health is child health, then on the other child health is maternal health.

As we hear in these COVID-19 times, health is a marathon not a sprint

We need to continue shifting the focus from ‘healthy pregnancies’ to ‘healthy families’. The former can be met with resistance by those evoking the dangers of the surveillance state and policing women’s ‘baby-making’ bodies. The latter reminds us of the many individuals involved, all equally important, all of whom need support for the long term beyond those initial nine months. We believe that NICE should listen to the plurality of women and families’ voices. The debate on recording alcohol in pregnancy will lead to constructive health gains that will benefit all.

The Need for Information Recompense

In the first part of the analysis, we explored cases where food imported to Britain led to an alert being raised. The two biggest sources for such alerts were Britain’s internal alert systems (largely the FSA), and the EU’s Rapid Alert System for Food and Feed (RASFF).

Since Britain is on course to lose access to RASFF-supplied information once Brexit is finalised in early 2021, we created the visualisation below as a comparison of the FSA and the RASFF in terms of both the number of alerts raised and the corresponding food’s origin country for each alert.

Map of the world where lines between the UK and other countries indicate the countries where alerts from the Rapid Alert System for Food and Feed have originated from

Alerts from the EU Alert System

The arcs show the countries of origin of imports that raised alerts, and the yellow-red density map shows the recorded hazard alert frequency from those origins. Interactive versions of the two map instances can be found by following these links: RASFF, UK internal alerts.

Map of the world where lines between the UK and other countries indicate the 8 countries where alerts from the UK Internal alerts have originated from

Alerts from the UK Alert System

If the UK does indeed lose access to the RASFF, the loss of food hazards information about our own imports will be tremendous. The burden then falls on the FSA to develop and extend their alert system (which currently focuses very little on internationally supplied food) to bridge this information gap and ensure food safety for globally imported goods. As of the time of writing we are unsure what steps are being taken by the FSA, or the government at large, to address this issue.

Post-Brexit Shifts in Food Hazard Threats

As an extension of this work, we turned our attention to tariffs and the effect they might have on whom Britain chooses to import from. Upon leaving the EU the UK will have to negotiate new trade deals with both EU and non-EU countries. Since the cost for EU-produced food is expected to rise for Britain after Brexit, we may indeed see Britain importing more from outside of the union, which would naturally bring a shift to the make–up of food hazards that our alert systems will need to detect. Anticipating this shift will allow us to better mitigate the accompanying risk if it does begin to materialise.

To this end, we explored the differences in food hazard threats posed by EU vs non-EU suppliers of Britain’s largest class of imported food: fruits and vegetables. The plot below shows the relative change in frequency for each category of food hazard in the case that Britain switched from 100% EU imports of fruit and vegetables to 100% non-EU. The hazard categories that are likely to increase in non-EU imports are highlighted in red. Please note that this is the most extreme case possible and is unlikely to unfold to this extent in reality– this plot is therefore presented as a guide to the different food threats posed by EU vs non-EU imports.

Bar chart showing difference in frequency of various food hazards, such as foreign bodies and allergens, after switching to non EU imports

Hazard alerts for fruits and vegetables: EU vs non-EU imports

Our full submission ‘Too Much Tooty in the Fruity: Keeping Food Safe in a Post-Brexit Britain’ can be found here, and includes a further breakdown of some of the categories of hazards displayed in the chart above. This work was awarded one of two joint runner-up prizes of the competition, tied with Angharad Stell’s Shiny app: ‘From a data space to knowledge discovery’. The winner of the competition was Robert Eyre, who produced this impressive visualization dashboard using D3. The Jean Golding Institute are hosting a showcase event on the 18th November, where all competition entries will be presented.

We would like to thank the JGI for hosting the competition, and our PhD supervisors, Prof. Tom Gaunt and Dr. Ben Elsworth, for encouraging us to enter.

Month: October 2020

Drinking in pregnancy: the right to record, or the right to privacy?