A Deadly Data Bias Against Women

Yentl Syndrome

Caroline Criado Perez

"The science of medicine is based on male bodies, but researchers are beginning to realize how vastly the symptoms of disease differ between the sexes — and how much danger women are in."

Perhaps the greatest contributor to the numbers of women dying following a heart attack, however, is that their heart attacks are simply being missed by their doctors. Research from the UK has found that women are 50% more likely to be misdiagnosed following a heart attack (rising to almost 60% for some types of heart attack). This is partly because women often don’t have the “Hollywood heart attack” as it’s known in medical circles (chest and left-arm pains). Women (particularly young women) may in fact present without any chest pain at all, but rather with stomach pain, breathlessness, nausea and fatigue. These symptoms are often referred to as “atypical,” a designation to which the British Medical Journal took exception in a 2016 article, saying that the term “may lead to the under-appreciation of risk associated with this presentation.” And under appreciation of the risk may in turn explain why a 2005 US study found that “only one in five physicians across multiple specialties was aware that more women than men die from cardiovascular disease each year, and most of these physicians did not rate themselves as effective in treating sex-tailored cardiovascular disease.”

Because women’s heart attacks may not only present differently, but may in fact be mechanically different, the technology we’ve developed to search for problems may not be suitable for female hearts. For example, a heart attack is traditionally diagnosed with an angiogram, which will show where there are obstructed arteries. But women often don’t have obstructed arteries, meaning that the scan won’t show up any abnormalities, and women who turn up at hospital with angina (chest pain) may simply be discharged with a diagnosis of “non-specific chest pain” and told they have no significant disease. Except they do: women with “normal” angiograms have gone on to suffer a heart attack or stroke shortly after being discharged from hospital.

The impact of such data gaps can snowball. When it comes to tuberculosis (TB), for example, a failure to account for how female social roles could make the disease more dangerous for women combines with a failure to collect sex-disaggregated data, leading to potentially deadly consequences. Men are more likely to have latent TB, but women are more likely to develop the active disease. Studies also suggest that women in developing countries who cook in poorly ventilated rooms with biomass fuels (that is, means millions of women) have impaired immune systems which leave them less able to fight off the bacteria. The result is that TB kills more women globally than any other single infectious disease. More women die annually of TB than of all causes of maternal mortality combined. But TB is nevertheless often considered to be a “male disease,” and as a result women are less likely to be screened for it.

Even when women are screened, they are less likely to be diagnosed...