Charities warn of “staggering” infringement on women’s data privacy in pregnancy proposed by NICE

Survey shows women reject plans that would see a glass of wine before a positive pregnancy test transferred without her consent to a child’s medical record

  • There is no compelling evidence of harm at lower levels of consumption, but NICE wants any alcohol reported by a pregnant woman automatically transferred to her child’s record as part of new Quality Standards on Fetal Alcohol Spectrum Disorder (FASD)
  • Women are to be routinely questioned on alcohol consumption throughout pregnancy and data shared without their consent being obtained
  • Proposals likely to fall foul of GDPR and the Data Protection Act 2018, which require a legal basis to collect and transfer private information in this way and GMC guidance on confidentiality – last year a woman lost her case against the NHS over their failure to disclose her father’s Huntington’s diagnosis to her, which he had not consented to sharing
  • Polling released today shows a majority of mothers (60%) feel data on alcohol consumption should not be shared without consent, with just 14% expressing support
  • The proposals will needlessly place around a quarter of a million children a year “at risk” of FASD: many women may have drunk before confirming pregnancy, yet under 3% of women report drinking more than a unit a week by 12 weeks gestation
  • In a significant proposed expansion of diagnostic criteria, any child with 3 areas of neurodevelopmental delay/impairment (eg problems with attention, memory, poor social skills) whose mother drank at any stage and at any level in pregnancy could receive a diagnosis of FASD
    NICE fails to consider the impact on women and birthing individuals of this approach – and does not mention the word women once in its Equality Impact Assessment
  • Leading pregnancy charities today express serious concern about the ethics and legality of  NICE’s Quality Standards on Fetal Alcohol Spectrum Disorder (FASD), which foresee the transfer of any and all alcohol consumption in pregnancy to a child’s health record without obtaining a woman’s consent. The proposals are based on the premise that any alcohol in pregnancy can cause FASD, but this has no basis in evidence – there is no compelling research showing harm at lower levels of consumption, and so no lawful justification for breaching women’s right to medical confidentiality in this way. 

In a poll commissioned to explore views on these proposals published today, fewer than one in five women (19%) aged 18-45 expressed support for healthcare professionals sharing data on alcohol consumption in pregnancy on a child’s health record without permission, and just 14% of mothers. 60% of those who were mothers felt that healthcare professionals should not share this data without consent. 

The British Pregnancy Advisory Service (BPAS) and Birthrights believe the proposals also deny a woman the right to have a frank and confidential conversation with her midwife about alcohol, and that this will not help either the pregnant woman or the child she goes on to have.

 Clare Murphy of the British Pregnancy Advisory Service said:

“These proposals are unjustified and disproportionate, with no basis in evidence. Women do not lose their right to medical confidentiality simply because they are pregnant. Most women report drinking very little alcohol in pregnancy if any at all – even if they may have drunk before a positive pregnancy test.  The risk of harm from this is likely to be low, and certainly does not warrant this staggering level of interference in a woman’s privacy. It is also hard to see how the vast expansion in the numbers of children deemed at risk of FASD in these proposals will lead to the support a small number of youngsters desperately need.”

Rebecca Brione of Birthrights,  a charity that promotes human rights in maternity care, said: 

“We have serious concerns about NICE’s failure to recognise the need for informed consent to screening and transfer of information to the child’s health record. It is unacceptable to propose such measures without any assessment of the impact on women and pregnant people, and their relationships with healthcare providers.” 

Academics researching women’s healthcare are also making representations to NICE.

Professor Ellie Lee, Director, Centre for Parenting Culture Studies, University of Kent, said:  

“The basis on which this system of surveillance of the entire population of pregnant women will support children and families who may be impacted by FASD remains currently unclear. It is readily apparent from evidence submitted to NICE, and in the wider discussion and literature on the subject, that the main group seeking greater support for the impact of childhood disability are parents, carers and children involved with adoption. The inadequacies of present support, including in educational provision are very serious and must be addressed, and full and due consideration should be given to much more specific and targeted approach. This is not what the Quality Standards propose.”  

Dr Pam Lowe, Senior Lecturer in Sociology at Aston University, said:

“The General Medical Council guidance on confidentiality recognises that there are issues for disclosure when genetic or other information can affect people other than the patient.  They suggest that there can be incidences where the sharing of information might be justified without informed consent if failure to disclose places others ‘at risk of death or serious harm’. This position was recently upheld in law, where the withholding of a diagnosis of Huntington’s Disease from other family members was seen as justified. Although FASD can have serious neurodevelopmental effects, the shared information makes no difference to the level of harm. Consequently, alcohol consumption during pregnancy does not meet the public interest threshold of harm.” 

ENDS

For further information please contact BPAS on press@bpas.org or 07788 725185

The NICE Quality Standards on FASD are currently out for consultation, closing on September 18th. You can find more information about the process here: https://www.nice.org.uk/guidance/indevelopment/gid-qs10139/consultation/html-content-3

BPAS commissioned Censuswide to poll 725 women aged 18-45, including 363 women who were mothers. Full poll findings are available from BPAS.

About BPAS

BPAS is a charity which sees almost 100,000 women a year for reproductive healthcare services including pregnancy counselling, abortion care, miscarriage management and contraception, at clinics across the UK. It supports and advocates for reproductive choice. BPAS also runs the Centre for Reproductive Research and Communication, which seeks to develop and deliver a research agenda that furthers women’s access to evidence-based reproductive healthcare, driven by an understanding of women’s perspectives and needs. You can find out more here: https://www.bpas.org/get-involved/centre-for-reproductive-research-communication/

BPAS intends to launch a not-for-profit fertility service in Spring 2021, to provide ethical, evidence based, person-centred care that supports patients. We intend to only charge what it costs to provide a safe, high-quality, and accessible service to patients who may be unable to access NHS funded care.