By Rebecca Crockett
Under the harsh fluorescent lighting of a medical research laboratory, the gender data health gap has nowhere to hide. Rigorous testing, carefully logged results and millions in funding can be the difference between life-changing discoveries and failure. But in recent years the medical community has realised it has forgotten one important group: women.
Women or mutilated men?
The evidence is glaring, in both a funding and clinical research perspective, men have far more representation. For centuries, male bodies have been accepted as the default, which has created a gap in knowledge on women’s health and put billions of lives at risk.
This isn’t a new phenomenon. As Elinor Cleghorn explained in Unwell Women. A Journey Through Medicine and Myth in a Man-Made World, Aristotle’s depiction of women as “mutilated men” echoed through the centuries as time and again women’s bodies were expected to fit into medical definitions based on male anatomy.
Today a lack of female representation continues, even down to the cellular level. Scientists grow cell lines which can grow and divide forever, allowing researchers to test drugs and treatments to compare results. Every cell has a biological sex, male or female. Depending on the sex it will respond differently to tests. Yet, a study from 2021 found that less than half of scientific studies reported the sex of the cells, and when they did, they were more likely to be male.
The “female problem” for medical research
Senior Research Impact Manager, Dr Anna Diaz Font, works with the Medical Research Foundation to evaluate their findings and explain them to the public. She said that the gap in gender data has widened even when female subjects are used. Data is not usually disaggregated by gender, so any new findings are lost in averages and numbers.
One of the reasons for not using female subjects was the unfounded belief that female hormones could skew results. Dr Font said: “We are a bit more complicated for certain things. For instance, on any given day of the month, a female’s hormonal status can change things, that’s why they were going to males. But hello! You still need to understand what is happening to women, even though they are more complicated.”
She said the issue hasn’t been tackled because of a lack of awareness among scientists.
“When you get used to something, then that is just how it works. You don’t think about it. Most of the cell lines that people use in their labs are male cell lines. You just use what you’ve read in a published paper that someone used before.
“If everyone has always used that, you just keep doing the same. So it’s easier to then compare your results with someone else’s.”
This doesn’t just apply to cell lines either. Of studies on animals and humans that reported the sex of their subjects, four out of five of them used male-only specimens.
“When you have your research based on a middle-aged white man, the results are not going to apply for a woman, or for someone that is not white, or for someone younger or older. Of course, it doesn’t apply only to women, but we are 50% of the population. We’re not a minority,” Dr Font said.
Tackling gender data health gap
Even when research moves into clinical trials, women have still been historically excluded. This goes back to the Thalidomide scandal in the early Sixties, when the use of the drug to treat morning sickness led to foetal deformities.
The US Food and Drug Administration responded by recommending all women of childbearing potential be excluded from clinical trials, removing a significant chunk of the population from the testing pool. Although the decision was reversed in 1993, there is now decades’ worth of medical knowledge applied to women that rely on information gathered on men.
So how is this being addressed?
For starters, what is being funded is just as important as how the research is carried out. To tackle the gender data health gap, the Medical Research Foundation directs funding to areas of medical research that show potential, but that have experienced low investment.
Dr Font said: “There is a need for investment in diseases that are more prevalent among women. Lupus is an example; it is an autoimmune disease that doesn’t have much funding and I think that nine out of ten lupus patients are women. So, what we are trying to do is fill the gaps where more research is needed.”
Researchers can apply to the Foundation for funding. Since 2022, grant applicants have been asked to explain how sex and gender considerations are included in their research, and if they aren’t, why not? Dr Font said that while she’s proud of the Medical Research Foundation for taking these steps, more actions need to be taken in the wider industry for it to make a difference.
“I think it’s important that all research funders start asking these questions. Because we may be able to change small things, but if everyone is asking the same, it means that it is on everyone’s mind and everyone is thinking about that before designing a research project.”
More widely there are calls from writers like Caroline Criado Perez, author of Invisible Women: Exposing Data Bias in a World Designed by Men, to create more diverse leadership teams. She writes: “It’s not always easy to convince someone a need exists if they don’t have that need themselves.”
In other words, by having more women, and communities that intersect with womanhood, leading research we will see a more diverse list of participants in clinical trials and a wider effort for representation in data collection.
None of this is easy. To close a gap this wide is going to take understanding, patience, and a lot of money. But by recognising the problem, centuries worth of questions may finally have some answers.
This article launches Fobbed Off and Female: A series on medical misogyny. To read more inspiring stories of everyday women making a real difference in the world, be sure to check out the latest edition of Wempower magazine, or listen to our podcast.
