Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term for a range of conditions that can result from drinking during pregnancy. It can include physical, mental and behavioural problems, including life-long learning disabilities. The UK’s National Institute for Health and Care Excellence (NICE) are currently considering a proposal that health professionals should tell all pregnant women* in England and Wales not to drink any alcohol during pregnancy, that any alcohol consumption during pregnancy should be recorded in their medical records and that this information should then be transferred to the child’s health record.
The proposal is a well-intentioned suggestion, aimed at preventing FASD and improving diagnosis and access to treatment for children with the condition. But it has alarming implications for those who are pregnant. It would give a message of institutional distrust of women and ignore the rights to medical confidentiality of those who are pregnant. The implicit justification for the proposal involves a medical institution making non-medical judgments about the role that different activities play in an individual’s life which only the individual themself is in a position to make. This is an improper over-reach.
Let’s start by looking at the guidance advising complete abstinence from alcohol during pregnancy. This guidance is not based on evidence that small amounts of alcohol cause harm, but on a ‘precautionary’ approach and the assumption that women require clear, simple messaging.
UK Chief Medical Officer’s Low Risk Alcohol Guidelines (2016) suggests that “guidance should be clear that it is safest to avoid drinking alcohol in pregnancy”. Appealing to these guidelines, the new proposal under consideration by NICE states that pregnant women should be given advice not to drink any alcohol. There is a subtle, but significant change here: we move from giving information – that it is safest to avoid drinking alcohol in pregnancy – to telling people what to do – they should avoid drinking alcohol, full stop. The proposal to record alcohol consumption on the child’s health record adds another element: surveillance of whether the pregnant person has complied with the ‘advice’.
The implicit justification for the proposal involves a medical institution making non-medical judgments about the role that different activities play in an individual’s life which only the individual themself is in a position to make.
What do the Low Risk Alcohol Guidelines say about the evidence that low levels of alcohol harm the fetus? “Research on the effects on a baby of low levels of drinking in pregnancy can be difficult to interpret. The risks are probably low, but we cannot be sure that this is completely safe.”
The conclusion that pregnant women should be advised not to drink in pregnancy, given the described state of the evidence, depends on two hidden assumptions. To get to this conclusion from the described evidence, the following argument is needed:
(Summary of Evidence): We cannot be sure that drinking small amounts of alcohol in pregnancy is completely safe.
(Hidden Assumption 1): Pregnant women should be advised to avoid any unnecessary activity unless we can be sure it is completely safe.
(Hidden Assumption 2): Drinking alcohol is an unnecessary activity.
Conclusion: Pregnant women should be advised not to drink any alcohol in pregnancy.
The argument doesn’t work without these two hidden assumptions. But there are problems with each of them.
Hidden Assumption 1 is an utterly unreasonable demand on pregnant women. There are almost no activities that we can be sure are completely safe in pregnancy. So accepting this principle would require pregnant women to be advised to give up all ‘unnecessary’ activities. It would require pregnant women to avoid ‘unnecessary’ driving, flying, swimming, cycling. We do not know that these everyday activities are completely safe. Actually, the situation is worse than that. We know that driving, flying, swimming and cycling are not completely safe. These activities do carry small risks. But it would be completely unreasonable for pregnant women only be permitted to drive or fly or cycle if necessary. As I have argued elsewhere, such a standard would undermine maternal well-being, autonomy and self-ownership.[i]
A deliciously sarcastic response piece in the British Medical Journal entitled “Women should not go to the movies during pregnancy.”[ii] makes the same point through an obvious parody of work on alcohol consumption. It notes that the dangers of exposure to traffic fumes are well documented and that there is no known safe level for fetuses – and thus argues that pregnant women should not go to the movies.
“As going to the movies is not a necessary activity, we need to develop guidelines explaining the risks of moviegoing to pregnant women and advise strongly against any such activity. Even a very small risk is not worth taking when the circumstances are that the activity is not absolutely necessary, Think of the children!
What naysayers to advising clearly against moviegoing for pregnant women fail to recognise is that the ONLY concern in public health is reducing very small risks ever further. Quality of life is of no concern.”
So what’s the problem with the second hidden assumption - the judgment that drinking alcohol is unnecessary? The problem is that this is not a simple medical judgment. It involves weighing up the value of different activities, and different pleasures, in someone’s life. Alcohol may play a role in religious, cultural or personal practices which are important to that person. The midwife or doctor is not in a position to judge whether these practices have sufficient importance to the person to outweigh the ‘probably low’ risks involved.
Restrictions on drinking during pregnancy may seem reasonable. It is very easy to say: “Why take the risk?” The question is rhetorical. The implied answer is that of course there is no way that drinking could be worth any risk at all to the fetus. But this apparent reasonableness depends, I think on at least three distortions.
First, the idea that a good mother should really be prepared to make any sacrifice – no matter how large – to avoid any risk – no matter how small – to her child (and that the demands of motherhood kick in as soon as, or even before one is pregnant).
Caring about alcohol in general is seen as morally suspect. It is likely to seem particularly deviant during pregnancy as it conflicts with the image of the good mother, whose pleasure and interests are far more wholesome and homely.
Second, the assessment of restrictions one-by-one instead of as a whole set. This leads us to underestimate how much we are asking of women. If we focus only on drinking, restrictions on drinking seem reasonable. If we focus only on plastic wrapped food, it doesn’t seem too much to give up. But then we run the same argument again and again. The little sacrifices add up to a demand to give up ordinary life.
Third, moralisation. Caring about alcohol in general is seen as morally suspect. It is likely to seem particularly deviant during pregnancy as it conflicts with the image of the good mother, whose pleasure and interests are far more wholesome and homely. There’s some evidence that our moral judgments distort our perceptions of risk: if we condemn the reasons someone has for placing others at risk, we are likely to think that risk is greater. If this research is right, then our moral distaste for enjoyment of alcohol during pregnancy will not only lead us to discount any value found in drinking during pregnancy, but also overestimate the risks of the action. This is a double whammy, pushing to the conclusion that restriction of drinking alcohol is justified.
The problems with dismissing the costs of restrictions on alcohol have been pointed out by others. For example, Quill R. Kukla, writing as Rebecca Kukla, responded to the 2016 advice from the CDC that ‘pre-pregnant’ women (i.e. all women of childbearing age not on birth control) should avoid alcohol. They argued: “alcohol consumption isn’t that frivolous; in asking women to abstain, we are excluding them from a wide variety of social rituals, community spaces and events.”
Kukla also criticised the CDC guidance as “rooted in the belief that … women cannot be trusted to regulate their alcohol intake appropriately in light of realistic risk data.” This belief is made explicit in the NICE draft quality standard and the Low-Risk Alcohol Guidelines. The abstinence only advice is justified on the grounds that pregnant women “need clear and consistent advice on alcohol.” What those who are pregnant really need is clear, consistent and accurate guidance about the current evidence, which allows them to make an informed decision about what to do, given the importance of the activity under discussion in their lives.
Let’s turn to the second part of the proposal: recording alcohol consumption during pregnancy in all children’s health records. It is easy to understand why this might seem like a good idea. Lacking data about alcohol consumption during pregnancy can make diagnosing FASD seem like trying to do a puzzle with a key piece missing. In some cases, a child with suspected FASD may not receive a diagnosis without confirmation of prenatal alcohol exposure – and may denied treatment and support without a diagnosis. This is a particular concern for adopted children – and suspected FASD is particularly high for this group. It might seem like the obvious solution is to make sure that the missing piece is available for every child.
But the problem is that this missing piece involves placing the pregnant person’s medical data on another person’s health record. It is well recognised that the use of medical data raises important ethical issues. And this data is ‘identifiable information’– as it is recorded on the child’s health record, it can be traced back to the person who gave birth to that child. Identifiable information is particularly ethically sensitive.
For example, the UK’s General Medical Council begins its guidance on Ethical and Legal Duties of Confidentiality by stating: “Trust is an essential part of the doctor-patient relationship and confidentiality is central to this. Patients may avoid seeking medical help, or may under-report symptoms, if they think their personal information will be disclosed by doctors without consent, or without the chance to have some control over the timing or amount of information shared.”
Demands for information, combined with overly simplistic abstinence advice, gives a message of institutional distrust of those who are pregnant.
The right to confidentiality is not absolute. Identifiable medical information can be shared when this is “justified in the public interest”. But it is clear that the default is that identifiable medical data should not be shared without informed consent. It needs to be shown that the reasons for disclosing really do outweigh the individual’s right to confidential medical care.
We might wonder whether those who are pregnant will be explicitly given a choice about whether their data is provided, recorded, and then transferred. Even if they are asked, they may feel coerced into agreeing. Research suggests that many women are not made aware that vaginal examinations during labour are optional and that many do not feel as if they have an option to decline.[iii] This is likely to be a particular issue for those who are younger, have mental health conditions, or are considered of interest to social services. Any proposal to make data gathering a routine part of antenatal care needs to explicitly address what kind of informed consent is needed and how genuine consent will be obtained.
Demands for information, combined with overly simplistic abstinence advice, gives a message of institutional distrust of those who are pregnant. They may begin to feel that they are the targets of surveillance during their health care appointments. This may have a negative impact on the relationship between those who are pregnant and their health care providers, adversely affecting the quality of the care received.
We need to think of other ways to help children with suspected FASD. A good start would be to make sure that confirmation of prenatal alcohol exposure is not required to access the support that they and their families need.[iv]
Acknowledgements:
This blog post was written during research leave on the BUMP: Better Understanding the Metaphysics of Pregnancy project funded by the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement No 679586).
I submitted a response on behalf of the University of Southampton to the NICE Consultation on the Draft Quality Standard for FASD. There is some overlap between that response and this blog post.
I thank Rebecca Brione, Zsuzsanna. Chappell and Nathan Nobis for reading a draft of this blog and providing extremely useful comments.
*The guidance refers to pregnant women but presumably will apply to pregnant trans men or non-binary individuals as well.
References and Notes
[i] See Woollard, “Motherhood and Mistakes about Defeasible Duties to Benefit”, Philosophy and Phenomenological Research, Published Online First: 16th December 2016. doi : 10.1111/phpr.12355. [ii] Jørgensen, “Women should not go to the movies during pregnancy.” BMJ 2015;351:h5232 [iii] See for example, Shabot, “Why ‘normal’ feels so bad: violence and vaginal examinations during labour – a (feminist) phenomenology.” Feminist Theory. April 2020. doi:10.1177/1464700120920764 [iv] I thank Rebecca Brione for this suggestion.
Disclaimer: Any views or opinions expressed on The Public Ethics Blog are solely those of the post author(s) and not The Stockholm Centre for the Ethics of War and Peace, Stockholm University, the Wallenberg Foundation, or the staff of those organisations.