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Despite different diseases affecting men and women differently, the majority of research is conducted with male rats, and with men in mind.
Suddenly, all our focus is now on medical science. We need it to save us. To come up with a vaccine, a cure, something to get us out of this mess and back into normality. Everywhere around the world, people in lab coats are scrambling to help us, and themselves, out. But how does medical research normally work? And is it as unbiased, even gender-wise, as we hope it is? There is a really funny picture in Bill Bryson’s new book, The Body – A guide for occupants. You see a male doctor doing a physical examination of a woman. She is standing in front of him, fully clothed. He is on one knee, his hand vaguely up her skirt.
This is, Bryson writes, an ‘early-nineteenth-century lithograph of a doctor examining his patient. For most of recorded history, we have known shockingly little about how women are put together’. Thank God, you think, that this is no longer the case. We have science now, and rigorous research, and feminism and equality between men and women. Right? Wouldn’t that be something?
Half of HIV patients are women, The New York Times said, but only between 11 and 19% of participants in trials are women. They also found that lab rats are six times more likely to be male than female. The reasons for this strange phenomenon are as simple as they are infuriating.
Unfortunately, despite everything we’ve gained over the last two centuries, women still draw the short straw when it comes to medical research. Twice as many women than men suffer from dementia, depression, strokes, and 70% of Alzheimer’s patients are women too. Yet, most of the research done into these diseases uses male lab rats and mostly male trial participants. It is called research bias, where men are the norm and women (and children) the odd ones out. This can have enormous negative consequences. Let me give you some examples.
Last year, the Allen Institute for Artificial Intelligence in Seattle looked at women’s participation in medical research over the last 25 years. They analysed 43,000 studies and 13,000 clinical trials. At first glance, it didn’t look so bad: overall, women made up 49% of participants. But then they started zeroing in at some detail and suddenly the picture changed. 51% of people with cardiovascular disease are women, let in clinical trials they make up only 39%. Kidney disease: 57% patients, 42% women in trials. HIV: 50-35. In fact, a recent story in the New York Times adjusted that last figure even more down. Half of HIV patients are women, it said, but only between 11 and 19% of participants in trials are women. The Seattle study also found that lab rats are six times more likely to be male than female. The reasons for this strange phenomenon are as simple as they are infuriating.
First of all, women have hormones and those tend to complicate research results. So, far too many researchers just eliminate females (humans and rats) from their tests. It makes it easier, that is true, but it also makes the outcomes only valid for men. And men are not the only people in this world. Also, most doctors, the Seattle academics say, have been taught to base physiological assumptions on male patients. Men are the norm, while women, children or anybody who doesn’t have a defined gender, is not. The problem is that the reason why people do studies in the lab is that they want to find medication to relieve or solve a medical problem. But if the research has been done on men, the resulting medication should be men-only too. But it isn’t. Women are given pills that have not been tested on other women and this can have disastrous results.
Last year, the Allen Institute for Artificial Intelligence in Seattle looked at women’s participation in medical research over the last 25 years. They analysed 43,000 studies and 13,000 clinical trials. At first glance, it didn’t look so bad: overall, women made up 49% of participants. But then they started zeroing in at some detail and suddenly the picture changed.
The other issue is that disease can show itself differently in men and women. Heart attacks, for instance, can look like indigestion in women, but not in men. Because most doctors don’t know that, women are less likely to survive a heart attack, especially if they’ve got a male GP. Another example is alcoholism. Studies have shown that ‘male-as-norm bias affects research, assessment and treatment. Women’s alcoholism is viewed as abnormal when compared to men’s, but women are researched as if their alcoholism were the same’. This ‘male-as-norm’ is also called androcentrism, the tendency to ‘centre society around men and relegate women to the periphery’. It is like the skin colour dilemma: white is not a colour, only non-white is. Here it means that men are the ‘neutral standard’ and only women are a gender.
So, a lot of research bias on the basis of gender is invisible to the people who do the research. Bryson had a great example in his book: in 2007, the journal Pain reviewed all of its published findings over the previous decade and found that almost 80% had come from male-only tests. A similar gender bias, based on hundreds of clinical studies, was reported for cancer trials in the journal Cancer in 2009. But nobody had actually noticed this imbalance, and medication and treatment (of men and women) had been based on research that took (almost) only men into consideration.
And it doesn’t stop there. In 2007, the Journal of the Royal Society of Medicine in the UK concluded that most of the research funding for coronary artery disease went into studying men, although more women suffer and die from it. Research into statins, medication aimed at preventing heart attacks and strokes, only has 16% women in the trials, although 45% of statins users are women. And there are some diseases and conditions that attract very, very little medical and research attention at all, mostly because they are female-only. That is why we still know almost nothing about menopause, postpartum depression, menstruation, even having babies. It is called the ‘gender data gap’ and women die from that lack of knowledge every day. And so it goes on.
As Rory O’Neill, professor of occupational and environmental research at the University of Stirling recently said in The Guardian: ‘we know everything about dust disease in miners, but you can’t say the same for exposures in what is seen as ‘women’s work’’. If we thought that science was (double) blind, we are very much mistaken. Google’s speech recognition software is 70% more likely to accurately recognise male speech. Apple’s SIRI can find prostitutes, but not abortion clinics. She also doesn’t know what you mean when you say you’ve been raped. I’m just saying: behind every (medical) invention, medication or study are people making it happen. Most of those people are male and they take themselves as the norm, not the rest of us. That should make us think next time we’re at the GP’s office.
For this story I have used the following sources:
Bill Bryson The body – A guide for occupants, London, Doubleday, 2019