I scrolled through my BlueSky feed this morning (come find me there if you are also using it). There was a lot of discussion about the theft of author’s intellectual property, used to train artificial intelligence systems without their consent or financial compensation. (Stories like this). Authors are, understandably, not happy about it.
What I am not seeing is discussion about the use of women’s clinical data to train computer systems for CTG analysis. And I think this is a conversation that we need to have.
A recent team of researchers published a review paper discussing possible technology solutions to address the inherent problems associated with CTG use (Lovers at al., 2025). A significant focus in their review was on the use of “Big Data” – large collections of data that can be used shared among researchers for reanalysis for purposes that are well beyond that imagined when the data were first gathered. In this case, they were discussing the use of large banks of digital CTG data for training computers to interpret CTG traces.
This is a potentially financially lucrative opportunity. Many different systems are currently being developed by different groups around the world (like INFANT, OxySys, SisPorto, and PeriGen for example). Success would mean the creation of an algorithm that can accurately detect the difference between a fetus that would benefit from being born as soon as possible and one that will not. This is the holy grail of CTG monitoring – something that has never been achieved in its 60 year history.
The race is on to see who can crack the code, so to speak. The “winner” would have a hugely commercially successful product on their hands. There are also significant pots of research funding on offer for researchers who are using “big data” approaches for medical research.
The five research teams that collaborated on this paper have amassed a library of over 250,000 women’s CTG AND clinical data, and are now analysing it. I think it is time we started to have conversations about where that data comes from. Denmark for example, has a centralised storage system for all raw CTG data and can link this to clinical outcomes for each woman and baby. Do women giving birth in Denmark know that their personal clinical data (anonymised but nonetheless, it is their information) is being shared with organisations that may potentially financially profit from using it? Are they asked for consent to gather, store, donate, or sell their data at the point when a midwife say “hop up on the bed and let’s put the monitor on!”?
I suspect not. (Let me know if you are working in Denmark….)
The authors of the review wrote several times of the challenges of gaining access to CTGs and clinical data saying:
“Laws and regulations… make it difficult, if not impossible to share pregnancy and labour data without patient consent. As a result, these data remain siloed within individual healthcare facilities and cannot easily leave their premises.”
And
“Securing funding to build such data sets is particularly challenging in this field, because clinical trials are already constrained by ethical and methodological challenges.”
Note the way that legislation and ethics approaches designed to ensure people maintain control over their personal health information are seen as problems, rather than as essential safeguards. This is not okay and people should be just as unhappy about it as authors are about their intellectual property being used to train AI systems without their permission.
So now what?
This is clearly a conversation that needs to happen and needs multiple voices to contribute to it. There is a lot of silence around what happens to women’s digital data once it is collected as part of routine healthcare provision. Here are some suggestions about how you might like to take part in this conversation:
- If you work in a maternity service where digital data is being generated and stored, start asking questions. You’ll know digital data is generated if the CTG appears on a screen, rather than only as a paper trace, particularly if there is a central fetal monitoring system, or computer interpretation of the CTG. Find out where that data is stored. In house in a large server? In the cloud? What protections are in place to ensure it is only ever used for the purposes that the woman consented to (i.e. for clinical decision making)? Get to know the privacy policy for your service, state, or country and ask some uncomfortable questions about whether the handling of CTG data meets the policy or not.
- If you provide antenatal education to women and help them with birth planning, consider suggesting a line in their birth plan / preferences / map document about expectations relating to data privacy.
- If you are planning to, or have given birth in a maternity service, used CTG monitoring, and that CTG was collected as digital data – you might consider having a legal representative draw up a document stating that you do not consent to the use of that data for purposes other than for clinical use. Maybe you are ok with the use of your data – in which case you include a clause saying that you agree to data sharing, provided you are financially compensated and name your price!
- If you have given birth in Denmark, or in another country that has a single central repository for CTG and clinical data, submit a freedom of information request to the health department asking to know if your data has been shared without your consent for non-clinical purposes, and if so, with whom.
- If you are a researcher or a peer reviewer of research – ask where the data came from and require proof that the women consented to the use of their data for the purpose of this research.
- If you are a journalist – there’s a story here that needs to be told!
Women matter. Our bodies matter. Our information matters. No one should profit off our information, unless we too profit from that information.
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References
Lovers, A., Daumer, M., Frasch, M., Ugwumadu, A., Warrick, P., Vullings, R. et al. (2025). Advancements in fetal heart rate monitoring: A report on opportunities and strategic initiatives for better intrapartum care. British Journal of Obstetrics and Gynaecology, In Focus, https://doi.org/10.1111/1471-0528.18097.
Categories: CTG, EFM, Feminism, Reflections
Tags: Artificial intelligence, Big Data, computerised interpretation, Consent, privacy
Birth Small Talk 
Its bad enough that our, and our babies’, data will be trawled, used and commercialised without our consent, but even worse if the health systems are paying (or being paid) for this via research or commercial contracts, when we ALL KNOW that it will be next to pointless. I say this as the vital ‘missing link’ is the information that likely will be a key element in the harm that may set back baby 1 with iron deficiency, baby 2 with brain damage and baby 3 with death; that of the timing, and extent of interruption of the functioning liminal transitional circulation immediately after birth!! Just sayin’
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