Medically reviewed
9 reasons why women have been left out of medical trials
JUNE 22, 2021
Before our Co-Founder and CEO, Shardi Nahavandi, started Tuune, a world-renowned stress professor told her women have been left out of medical trials for years because we “pollute” their data. Read on for 9 reasons why so many studies have been (and still are) carried out by men, for men.
Key Takeaways
Still, in 2021, we’re in a world where most medical research is focused on men(1).
When it comes to contraception choices, it means that for those of us with cycles, there’s little research surrounding our hormones. Ultimately, this has contributed to millions of people suffering at the hands of birth control that just isn’t right for our bodies.
Excuses for not involving us in medical trials include the complexity of our hormones(1).
We’re here to pioneer this long-overdue research to finally give our hormones the attention they deserve.
For generations, women have been left out of medical trials(2).
And, shockingly, it’s only been a mere 27 years since a U.S. federal law required the medical research agency, the National Institutes of Health (NIH), to include women in studies(2).
Obviously, this is an issue for loads of reasons, but one pretty major one is that research that truly investigates and understands how our hormones work, especially how they behave differently to other folx, is severely lacking.
And when it comes to contraceptives, this vast knowledge gap has led to an unhealthy ‘try now, deal with the consequences later’ kinda approach—that's contributed to millions of women suffering at the hands of the wrong birth control for their bodies.
So, why have women been left out of medical trials? Here are just 9 of the reasons why research has lacked over the years—and what we think about them.
1. We’re all ‘mutilated males’ because we didn’t fully develop in the womb
Erm, obviously this is not even vaguely true but it’s what good old Aristotle (ca. 335 b.c.e.) believed and it kind of stuck (and sucked)(7)...
He thought that people with cycles’ development stopped because the coldness of our mother’s womb overcame the heat of our father’s semen(7). Basically, women = men whose development stopped too early(7). Oh, and that we’re colder and more passive than men because of this(7) (cheers hon).
2. It really is a man’s world
Back in the day, medicine was a male profession by default. Doctors, researchers, innovators were all men (obviously this was a huge opportunity lost for everyone). Bias—unconscious or otherwise—led to a huge disparity in the way male and female bodies were treated, studied, and generally understood(1).
Although the situation has to some extent improved, with medicine thankfully no longer a male profession by “default”, things are by no means equal. According to the UNESCO Institute for Statistics, fewer than 30% of the world’s researchers are women. Studies have also found that women in STEM fields publish less, are paid less for their research, and do not progress as far as men in their careers(8).
Although the situation has to some extent improved, with medicine thankfully no longer a male profession by “default”, things are by no means equal. According to the UNESCO Institute for Statistics, fewer than 30% of the world’s researchers are women. Studies have also found that women in STEM fields publish less, are paid less for their research, and do not progress as far as men in their careers(8).
3. Our sole and only purpose is to reproduce.
Ew, some of us may want to, some of us may not. It’s our prerogative.
The idea that all we can possibly do is reproduce was strengthened by medical texts and illustrations. In 1796, the German anatomist Samuel Thomas von Soemmerring published one of the first illustrations of a female skeleton(9). He drew the skeleton with wider hips and smaller skulls than males, ‘proving’ that baby-making is our one and only calling in life(9). Cheers, Sammy. Examples like this all contributed to the view of women as people that didn’t deserve to be researched and certainly couldn’t be trusted to lead the research themselves.
Examples like these exacerbated stereotypes and bias, such as concepts like “maternal instinct”. Dr. Catherine Monk, a psychologist and professor of medical psychology at Columbia Medical Center, believes this school of thought is exaggerated and largely a myth, with history making us believe this instinct exists in women when many of us just learn on the job from experience(10). Another study found that, contrary to what popular culture may make us believe, men and women are equally skilled at identifying their child’s cries(11). Still, in 2021, the caregiving role is ours as standard—and any change to the status quo seems to put us right back where we started.
4. Our hormones are too complex
Our Co-Founder and CEO, Shardi Nahavandi, was told by a leading stress professor that the medical industry often doesn’t analyze female subjects because the complexity of our hormones “pollute” their data. This shocking remark sparked her desire to set up Tuune to help fill in the gaps and offer people with cycles the personalized healthcare all of us deserve.
In our book, there’s no such thing as ‘too’ complex. As you can see from the flashy charts below, our sex hormones fluctuate a lot throughout the month, affecting how we feel. For those without cycles, they do experience hormonal changes but they change daily rather than throughout the month. Basically, we’re very different.
5. Trials may harm our unborn babies
Those of us with cycles have a limited number of eggs, with our reproductive capability having a time cap (i.e. our age). However, men can continue to produce sperm forever (an unlimited supply). The National Institute of Health (NIH) and the U.S. Food and Drug Administration (FDA) once said that menstruating females shouldn’t be included in early clinical trials as this would protect us from potential drug toxicity that could reduce egg count and potentially affect our fertility(12).
Although the ambition here is seemingly noble, the outcome was troubling as decisions about female healthcare were made without women being in the room. It’s yet another example of men making decisions about women’s bodies. It also doesn’t take into account people who don’t want children, gender status, and sexual orientation. Another way of looking at it is seeing us as purely ‘walking wombs’ with a single purpose: to reproduce (see point 3).
6. We’re all hysterical
As if this was a thing. ‘Hysteria’ was the most common mental health diagnosis in the 18th century, with those of us with cycles believed to be far more likely to succumb to the ‘condition’ than those without(13). Basically, it described what was considered ‘emotional excess’(13). Shockingly, hysteria wasn’t removed from medical texts until 1980(13).
If you ask us, the reason for labeling women with ‘hysteria’ was down to the general misunderstanding and fear of the unknown surrounding female hormone health. That, folx, is something we’re on a mission to solve.
7. We don’t get enough sex
‘Sexual deprivation’ was apparently one of the main causes of this hysteria that afflicted the ‘weaker' sex(13). It’s another point of view that ‘others’ women, blaming us for acting or not acting in a certain way. We also can’t win, as paradoxically sexually forward behavior was also considered a “trait of hysteria”. Not only that, this belief focused on heterosexual sex, dictating our sexual preferences and suggesting that only males were equipped to satisfy women.
8. And we’re often just being “difficult”
Although the concept of hysteria actually being seen as a serious, real medical condition almost seems impossible to fathom, its legacy lingers.
Then Senator Kamala Harris, Democrat of California, now Vice President of the United States, was interrupted twice in a week by her male colleagues, being called “hysterical” when she was simply being assertive(14).
A gynecologist recently said to public health researcher at Monash University in Australia, Dr. Kate Young, “Do mad people get endo or does endo make you mad? It’s probably a bit of both.”(15) This seriously troubling point of view once again dismisses female health conditions as in their heads or ultimately more linked to their mental health than anything else.
Dr. Young has since published a paper examining the “discursive” language used by clinicians when discussing endometriosis(15). The paper suggests clinicians are often not equipped to address and treat female healthcare needs, and part of this problem is down to us being excluded from medical research and clinical trials for centuries(15).
9. Our pain isn’t really that bad
Like, forever, there seems to be this disconnect between the pain people with cycles feel and how much we’re listened to. According to the Endometriosis (UK) APPG Report in 2020, women suffer an average delayed diagnosis of 8-9 years before they’re diagnosed with endometriosis—this hasn’t changed in a decade(16). And when we’re in pain, we wait longer in emergency departments and are less likely to be given effective painkillers than men(17).
Research has also found that people with cycles sense pain differently from those without. Therefore, when treating pain (whether abdominal or not), it’s so important to tailor treatment according to the individual(18).
Ultimately, even though so many of us have experienced side effects from methods of birth control, the research required to solve the issue has been less likely to reach the top of the priority list because of the way our pain is viewed and (mis)understood.
Oh, and not to mention that the World Health Organization commissioned a trial into hormonal birth control for men (a two-hormone injection designed to lower sperm count, but the second stage was stopped after the independent review panel found the drug had too many side effects. The most common side effect was acne, some developed mood swings, and one person developed severe depression. What can we say, these are some of the side effects that many people with cycles have had to put up with for years because they haven’t been on the right birth control for their bodies.
To summarize…
Obviously, the excuses for being left out of medical studies are widespread and by no means justify our absence. However, rather than lament the past, we’re now here to do something about it.
At Tuune, we’re a formidable team of doctors, scientists, and engineers from Imperial College London, UCL, and Stanford Medical Centre and are backed by many of the world’s strongest scientific institutions such as The Crick Institute, UCL, and Cambridge University.
We’re making up for lost time, finally putting the hormones of people with cycles under the spotlight so we can make intelligent, informed recommendations about the best birth control for you.
References
Beery AK, Zucker I. Sex Bias in Neuroscience and Biomedical Research. Neurosci Biobehav Rev. 2011 Jan;35(3):565–72.
Mazure CM, Jones DP. Twenty years and still counting: including women as participants and studying sex and gender in biomedical research. BMC Womens Health [Internet]. 2015 Oct 26 [cited 2021 Jun 2];15. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4624369/
The female problem: how male bias in medical trials ruined women’s health [Internet]. the Guardian. 2019 [cited 2021 Jun 2]. Available from: http://www.theguardian.com/lifeandstyle/2019/nov/13/the-female-problem-male-bias-in-medical-trials
The Coronary Drug Project. Initial findings leading to modifications of its research protocol. JAMA. 1970 Nov 16;214(7):1303–13.
Hershcopf RJ, Bradlow HL. Obesity, diet, endogenous estrogens, and the risk of hormone-sensitive cancer. Am J Clin Nutr. 1987 Jan;45(1 Suppl):283–9.
News TF The Rocky Mountain. FEMALE TROUBLE [Internet]. chicagotribune.com. [cited 2021 Jun 3]. Available from: https://www.chicagotribune.com/news/ct-xpm-1986-10-29-8603210488-story.html
Gilbert SF. Sex determination. Dev Biol 6th Ed [Internet]. 2000 [cited 2021 Jun 2]; Available from: https://www.ncbi.nlm.nih.gov/books/NBK9985/
Women in Science [Internet]. 2016 [cited 2021 Jun 3]. Available from: http://uis.unesco.org/en/topic/women-science
Schiebinger L. Skeletons in the Closet: The First Illustrations of the Female Skeleton in Eighteenth-Century Anatomy. Representations. 1986;(14):42–82.
Maternal Instinct: Does It Really Exist? [Internet]. Healthline. 2020 [cited 2021 Jun 3]. Available from: https://www.healthline.com/health/parenting/maternal-instinct
Gustafsson E, Levréro F, Reby D, Mathevon N. Fathers are just as good as mothers at recognizing the cries of their baby. Nat Commun. 2013 Apr 16;4(1):1698.
Liu KA, Mager NAD. Women’s involvement in clinical trials: historical perspective and future implications. Pharm Pract [Internet]. 2016 [cited 2021 May 10];14(1). Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4800017/
Tasca C, Rapetti M, Carta MG, Fadda B. Women And Hysteria In The History Of Mental Health. Clin Pract Epidemiol Ment Health CP EMH. 2012 Oct 19;8:110–9.
Kirsten Powers: “How was Sen. Harris hysterical?” - CNNPolitics [Internet]. [cited 2021 Jun 3]. Available from: https://edition.cnn.com/2017/06/13/politics/powers-miller-kamala-harris-hysterical-sessions-hearing-ac360-cnntv/index.html
Young K, Fisher J, Kirkman M. “Do mad people get endo or does endo make you mad?”: Clinicians’ discursive constructions of Medicine and women with endometriosis. Fem Psychol. 2019 Aug 1;29(3):337–56.
Endometriosis APPG Report Oct 2020.pdf [Internet]. [cited 2021 Jun 2]. Available from: https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf
Samulowitz A, Gremyr I, Eriksson E, Hensing G. “Brave Men” and “Emotional Women”: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain. Pain Res Manag [Internet]. 2018 Feb 25 [cited 2021 Jun 2];2018. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845507/
Paller CJ, Campbell CM, Edwards RR, Dobs AS. Sex-Based Differences in Pain Perception and Treatment. Pain Med Malden Mass. 2009 Mar;10(2):289–99.
Written by
Hermione Wright (she/her)
An NCTJ-qualified journalist, Hermione writes for national and local publications in addition to creating thought leadership for brands with a purpose. Passionate about telling the stories that matter, she helps our community make their own clued-up choices about their healthcare.
Written by
Hannah Durrant (she/her)
Hannah is a Biomedical Content Writer at Tuune, with a BSc in Biomedical Sciences from University College London. She is passionate about bringing together the scientific community and the general public by disseminating modern science via digestible, engaging and thought-provoking content.
Medically reviewed by
Dr. Alejandra Elder Ontiveros, MD, PHD (she/her)
Ale is a PhysicianScientist with a doctoral degree in Development Biology and Embryology and is currently a Postdoctoral Scholar at UCSF. Ale believes that the union of academia and business can lead to transformative discoveries for women’s health.
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