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

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

Follow Luisa and Cheryl on TwitterCheryl McQuireLuisa Zuccolo

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.

Pregnant woman holding a glass of red wine

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.

New evidence on risks of low-level alcohol use in pregnancy

Dr Kayleigh Easey (@KayEasey), from the Bristol Medical School’s MRC Integrative Epidemiology Unit at the University of Bristol, takes a look at a recent research investigating effects of drinking in pregnancy and child mental health.

Whilst it’s generally known that heavy alcohol use during pregnancy can cause physical and cognitive impairments in offspring, there has been relatively limited evidence about the effects of low to moderate alcohol use. As such there have been conflicting conclusions about the potential harm of drinking in pregnancy, and debate around official guidance.

Alcohol use in pregnancy is still common with a recent meta-analysis showing over 40% of women within the UK to have drank some alcohol whilst pregnant. In 2016 the Department of Health updated their guidance advising abstinence from alcohol throughout pregnancy. This was in contrast to their previous advice of abstaining from alcohol in the first three months, but that 1-2 units of alcohol per week were not likely to cause harm. The updated guidance reflected a precautionary approach based on researcher’s advice of ‘absence of evidence not being evidence of absence’, due to the challenges faced in this area of study.

Certainly it has been challenging for researchers to determine any causal effect of alcohol use in pregnancy, particularly as the existing observational studies do not show evidence of causality. As such, caution over interpretation of results is needed given the sensitivity of alcohol as a risk factor and traditional attitudes towards low-level drinking.

Our new research sought to add to the limited body of evidence investigating causal effects, specifically on how low to moderate alcohol use could influence offspring mental health. We used data from a longitudinal birth cohort (the Avon Longitudinal Study of Parents and Children) which has followed pregnant mothers, their partners and their offspring since the 1990s, to investigate whether the frequency mothers and their partners drank alcohol during pregnancy was associated with offspring depression at age 18. We also included partner’s alcohol use in pregnancy (which is unlikely to have a direct biological effect on the developing fetus) and were able to examine if associations were likely to be causal, or due to shared confounding factors between parents such as socio-demographic factors.

We found that children whose mothers drank any alcohol at 18 weeks pregnancy may have up to a 17% higher risk of depression at age 18 compared to those mothers who did not drink alcohol. What was really interesting here is that we also investigated paternal alcohol use during pregnancy and did not find a similar association. This suggests that the associations seen with maternal drinking may be causal, rather than due to confounding by other factors (which might be expected to be similar between mothers and their partners). Many of the indirect factors that could explain the maternal effects are shared between mothers and partners (such as socio-demographic factors); despite this, we only found associations for mothers drinking.

These findings suggest evidence of a likely causal effect from alcohol consumption during pregnancy, and therefore evidence to support the updated government advice that the safest approach for alcohol use during pregnancy is for abstinence. This adds to other limited research on the effects of low level alcohol use in pregnancy. Whilst further research is needed, women can use this information to further inform their choices and help avoid risk from alcohol use both during pregnancy and as a precautionary measure when trying to conceive, as supported by the #Drymester campaign.

Our study highlights also the importance of including partner behaviours during pregnancy to aid in identifying causal relationships with offspring outcomes, and also because these may be important in their own right. I am currently working within the EPoCH project (Exploring Parental Influences on Childhood Health) which investigates whether and how both maternal and paternal behaviours might impact childhood health. In the meantime, it may be time for a further public health promotion highlighting that an alcohol-free pregnancy really is safer for children’s health.

 

This post was originally published on the Alcohol Policy blog.