Pregnant women’s alcohol consumption could be recorded on their child’s medical records under plans for England being considered by National Institute for Health and Care Excellence (Nice), prompting criticism from pregnancy rights advocates. The proposal from Nice has been drawn up as part of a consultation to cement guidelines for doctors to diagnose and prevent foetal alcohol spectrum disorder (FASD). Proponents argue that the risk of FASD – a range of physical and mental conditions caused by drinking in pregnancy – to an unborn child means the mother’s right to privacy should be secondary. Pregnancy charities including the British Pregnancy Advisory Service (BASP) and Birthrights suggested that the guideline on recording alcohol consumption could fall foul of data protection regulations.
“Women do not lose their right to medical confidentiality simply because they are pregnant,” said Clare Murphy, director of external affairs at BASP, pointing to a survey of 725 women carried out by the charity that found 60% felt alcohol consumption data should not be shared without consent. “I think it’s a really quite shocking state of affairs, and we are very surprised that this is the path that Nice have gone down,” she said. “What we’ve ended up doing is creating this climate in pregnancy which leads to real heightened anxiety, stress, worry and huge maternal guilt, particularly if something goes wrong.” But Sue Armstrong Brown, chief executive of Adoption UK, said: “There is undoubtedly a balance to be struck here between the protection for the freedoms of the mother and the protection for the health of the unborn child. “But the situation that we’re in at the moment is that … governments and health systems are only at the beginning of being able to correctly identify and then manage the condition. So, we’re obviously in a situation where some things are going to need to change if we’re going to improve.” Alcohol abuse is a factor in seven out of 10 cases when children are put up for adoption.
The incidence of FASD in the UK is unknown. Symptoms include severe behavioural problems, poor impulse control and learning difficulties. While drinking more than 1-2 alcohol units a day has been strongly linked to lower birth weight and premature births, research on the effects on a baby of low levels of drinking in pregnancy can be difficult to interpret. A 2016 report by the UK chief medical officer found the risks are probably low, but the “precautionary” principle suggests it is safest to avoid drinking alcohol in pregnancy, it concluded. Nice says “there is no known safe level of alcohol consumption during pregnancy”. A yet to be published study of 7,000 women, funded by the Wellcome Trust and conducted by BASP, found that women are aware of the dangers of drinking during pregnancy, Murphy said. “It’s a source of real frustration for me that … studies try to prove that somehow women are living in ignorance about this.” Brown said: “Unless the records are clear… the child is often prevented from seeking a diagnosis. So, there’s quite a lot at stake in getting this right. The research shows that if a child is diagnosed before the age of six, their likely later prevalence of mental health problems is halved.” Nice said: “The draft quality standard on FASD is based on guidance published in Scotland last year and in use elsewhere in the world, and takes into account the recommendations made by the chief medical officer … The feedback we receive from external organisations and members of the public during this consultation period will help us better understand what works, and what doesn’t, for practice in England.”