Research into women’s reproductive health has come a long way, at least since 1666. A Royal Society research report I stumbled on during the Covid pandemic records the examination of the remains of a five-month-old foetus with an unusual physical presentation. The author described it as “in form of an Ape, having all over its shoulders, almost to its middle, a mass of flesh, that came from the hinder part of its head, and hung down in the form of a little Cloak”. Speculating on the cause, the author noted that the mother “had seen on a Stage an Ape so cloathed”. He concludes that this pregnant woman seeing a coat-wearing ape in a stage show had caused her foetus to assume the form of the ape in his coat.
It was a sobering reminder that scientists of the age understood little of pregnancy and gestation – but institutional blind spots on the impact of sex and gender on medicine are far from history.
Fast-forwarding to 2019 and cracking open another of history’s most celebrated journals, the Lancet, the editorial outlines "Cardiology’s Problem Women". It attributes a “disproportionately higher mortality in women with cardiovascular disease than men” to numerous factors. These include a medical stereotype of the heart attack as the version men experience (differing from the typical woman’s presentation) – meaning women received less appropriate and urgent initial treatment. The editorial mentions a complete absence of women research subjects in major studies on which many treatment guidelines were based. It concludes by acknowledging the “historic failings of cardiology to take a balanced approach to research”, which “led to fundamental flaws in the care for women with heart disease and has cost the lives of many women”.
Even something as medically routine as cardiology is tainted by the tendency to think that men’s bodies represent all bodies, and that research based on their bodies is sufficient to steer general guidelines. As Caroline Criado Perez’s 2019 book Invisible Women illustrates, from crash-test dummies to research subjects, the male body is treated as neutral. Despite being the global numerical majority, women are treated as though we are an esoteric minority. Combined with taboos and stigma around reproduction, this culminates in a situation in which we have big holes in the web of knowledge.
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Last week, the Health Research Board (HRB) released a statement about results of an evidence review conducted as part of the Women’s Health Action Plan, which began in 2022. A major component of the plan is enriching the evidence base for women’s health by supporting clinical, academic and applied research on relevant topics. The analysis examined 2,300 studies in 38 OECD countries, and discovered that – perhaps unsurprisingly – there are big gaps in the research around women’s health.
I saw a preview of the HRB findings at a special meeting in TCD’s School of Nursing and Midwifery in April. As the research gaps were revealed – only a handful of studies on pelvic organ prolapse, vaginosis, early pregnancy loss, post-partum mental health in the OECD, and literally none conducted in Ireland – I looked around at a roomful of troubled faces, belonging to every level of expert in obstetrics, midwifery and nursing.
These are anything but niche medical experiences. Issues such as these – ones that were once deemed part of the stoic business of childbirth, or perhaps just part of living life with a uterus on-board – are often treated as non-scientific. I remember a doctor discussing the “challenging” recovery that follows a Caesarean birth as though the alternative – launching a human skull through the birth canal – would leave no mark. As if those consequences were medical nothings – lady stuff.
These gaps can produce a vicious circle. Insufficient research is conducted because the topics don’t occur to researchers as medically urgent, and they are not considered medically urgent because little research is done on them. These factors also contribute to under-disclosure and under-diagnosis – many people simply don’t know enough about them. Yet they routinely affect 50 per cent of the population.
Some of these issues have very well developed advocacy groups. UCC’s pregnancy loss research group reliably produces research evidence and recommendations on what needs to be done to help steer research and guide policy relating to pregnancy loss.
It is good that the Department of Health requested the review and that the HRB undertook and supplied it. But it is disappointing to see the statement on its findings close with general remarks on how the maps might be used to guide “further research” and the importance of a consistent body of evidence for women’s health research. We need to see statements such as this linked to concrete, ambitious plans from the HRB and a new suite of grants directed at funding this research and closing those gaps. But, as Senator Patricia Stephenson noted on Tuesday, there was no explicit mention of women’s health in the budget, so perhaps it’s disappointing but not surprising.
Dr Clare Moriarty is a visiting researcher at the Trinity Long Room Hub.
