Plans that could see pregnant women who drink alcohol have their consumption recorded on their baby’s medical records has caused an uproar.
The British Pregnancy Advisory Service said the move would be a ‘gross infringement’ of data privacy and could risk trust between women and healthcare professionals.
Midwives currently ask women about what they have drunk since conception but are not obliged to record that information.
A single glass of wine consumed even before a woman knew she was pregnancy will be documented under the controversial proposal from The National Institute for Health and Care Excellence (Nice), regardless of the expectant mother’s consent or the stage of pregnancy.
An accurate recording of a pregnant woman’s alcohol consumption will help identify children at risk of foetal alcohol spectrum disorder (FASD), Nice says, a range of conditons which are often undiagnosed but can cause life-long problems.
Charities say if a woman had small amounts of alcohol before she knew she was pregnant, as is often the case for unplanned pregnancies, the risk of FASD is typically low.
Drinking just one glass of wine while pregnant, even before women know for sure they are expecting, will be recorded on their baby’s medical records under controversial new proposals
Under the new plans, mothers-to-be would be urged to recall how much booze they have had at antenatal appointments, with the results formally noted in maternity records before then being transferred to those of the newborn child, according to the Times.
An accurate recording of a pregnant woman’s alcohol consumption will help identify children at risk of suffering physical problems as well as issues around learning and behaviour through FASD, Nice says.
Being able to look at drinking habits is particularly key for children who are adopted or placed into care, it adds.
However, the proposed guidelines have proved controversial with charities who have blasted them as ‘unjustified and disproportionate’ and urged Nice to rethink the idea.
WHAT IS FOETAL ALCOHOL SYNDROME?
When a pregnant woman drinks, the alcohol in her bloodstream passes freely through the placenta into the foetus’ blood.
Because the foetus does not have a fully developed liver, it cannot filter out the toxins from the alcohol as the mother can.
Instead, the alcohol circulates in the foetus’ blood system which can harm brain cells and damage the nervous system of the developing baby throughout the entire nine months of pregnancy.
It can result in the loss of the pregnancy, and babies that survive may be left with lifelong problems.
Foetal alcohol syndrome is a type of foetal alcohol spectrum disorder (FASD), the name for all the various problems that can affect children if their mother drinks alcohol in pregnancy.
- a head that’s smaller than average
- poor growth – they may be smaller than average at birth, grow slowly as they get older, and be shorter than average as an adult
- distinctive facial features – such as small eyes, a thin upper lip, and a smooth area between the nose and upper lip, though these may become less noticeable with age
- movement and balance problems
- learning difficulties – such as problems with thinking, speech, social skills, timekeeping, maths or memory
- issues with attention, concentration or hyperactivity
- problems with the liver, kidneys, heart or other organs
- hearing and vision problems
These problems are permanent, though early treatment and support can help limit their impact on an affected child’s life.
Sources: NHS and NOFAS-UK
Clare Murphy from the British Pregnancy Advisory Service (BPAS) said: ‘Most women report drinking very little in pregnancy if any at all, even if they may have drunk before a positive pregnancy test.’
She said on BBC Radio 4 Today programme: ‘The idea that this data will be transferred without a women’s consent onto her child’s health records I think is an absolutely gross infringement of her data privacy. And our position is very much that women don’t lose their right to medical privacy simply because they are pregnant.’
The charity, which offers advice, counselling and abortion care for some 100,000 women every year, added that there is no evidence for lower levels of alcohol consumption resulting in harm.
Ms Murphy said: ‘There is simply no compelling evidence of harm at low levels of consumption.
‘I think in a time when we are talking more and more about public health policy following the evidence and also having discussions about data privacy, this set of proposals is an affront on both of those levels.
‘I think we need to think really carefully about the implication on the really important relationship between a woman and her healthcare professional if she feels her confidentiality is going to be jeopardised in this way.
‘We want women to be able to have frank and confidential conversations with their midwives because that’s the best way to achieve and protect the health of pregnant women and their babies.’
Ms Murphy said women who drink heavily are ‘often well known to healthcare professionals’.
Birthrights also suggested the proposals could see a breakdown in trust between midwives and expectant mothers, while the Royal College of Obstetricians and Gynaecologists admitted it ‘shares some of the concerns raised’ and legal experts suggested they could be unenforceable by breaching GDPR.
Matthew Holman, a data privacy lawyer, said: ‘Any attempt to force disclosure against the mother’s wishes is likely to be unlawful except perhaps in the most limited cases where there is a clear and present risk to the unborn child.’
Nice insists feedback from members of the public and external organisations will help shape understanding of what will and won’t work in England.
Each year there are 40,000 babies born in the US with a FASD, a diagnosis used to describe a wide range of physical, mental, behavioral, and learning disabilities.
It’s not clear how many are affected in the UK. But leading support group NOFAS-UK cites research by the University of Bristol which indicated six per cent of a stud cohort, equivalent to up to 4million British people, may have FASD.
But it could be as high as 17 per cent, depending on how the reasearchers analysed the data. The findings were criticised for potentially causing pregnant women to panic and seek an abortion.
It suggests FASD, often dsecribed as a a ‘hidden disabilty’ affects more people than autism and is sadly most often undiagnosed or misdiagnosed.
NOFAS-UK says: ‘If you had small amounts before you knew you were pregnant or while pregnant, in most cases the RISK is low. Choose to stop drinking now for your baby’s future. If your child has challenges later, ask doctors about FASD.’
The risk of FASD is higher the more you drink, the NHS says, although there’s no proven ‘safe’ level of alcohol in pregnancy. Therefore not drinking at all is the safest approach.