In the 1950s, doctors prescribed many pregnant people with a sedative drug, thalidomide, which was used to relieve pregnancy-related nausea. Tragically, this drug caused thousands to give birth to babies with severe limb deformities. In the wake of this horrific accident, the research community took extreme steps to limit and exclude women from medical research. In the late 1970s, women of childbearing age were excluded from medical research, regardless of their intention or ability to have children. Instead of giving women the choice, a decision was made on their behalf under the guise of protection, which did nothing more than place their health at even greater risk. Without specific data on women, we lack critical information to understand, prevent, and treat health conditions in women.
Excluding women in research evolves into a lack of acknowledging diseases that heavily affect women. A 2017 study found that over 45% of women were unaware heart disease is the number one killer of women, and the percentages were higher for Hispanic (73%) and Black women (55%). While chest pain is a typical indicator of a heart attack, women are more likely to have nausea, dizziness, or vomiting. The lack of women in heart disease research has created a societal norm where people automatically think of chest pain as the first indicator of a heart attack. This ultimately puts women’s health at risk and makes it difficult for women and physicians to catch a heart attack early and reduce further health damage due to the heart attack.
It has been 28 years since the National Institute of Health (NIH) was mandated to include women and minorities in research, but women are still not accurately represented in clinical trials. Between 2010 and 2017, women were only 38% of all participants in heart disease trials despite being 51% of the population—including 51% of people who die from heart disease.
The lack of data on women means medical professionals are often unprepared to screen women for health conditions. Only 59% of cardiologists felt their medical training prepared them to screen women for risks of heart disease. In a medical field that focuses specifically on the heart, being unprepared to assess 51% of the population poses a massive health risk to women.
Without strong and consistent data, women will find it harder to battle social stigma and get physicians and society to prioritize their health over body image—Weight issues were rated as more of a concern than cardiovascular disease by both women and physicians. A social fascination with women’s weight and a lack of inclusive data leads to women being told to lose weight more often than being given a treatment for heart conditions, even when men of the same age and more overweight are likely to be given treatment.
Women must be accurately represented in all medical research. We need an increase in research focused specifically on women to compensate for the extreme historical lack of data on more than half the population.
Accurately representing women in data collection and medical research challenges a long-time male–dominated biology of disease, disease prevention, and treatment. We can begin to address health conditions that impact women when they are equitably represented in data collection and research.