Data Bias and its Negative Effects on Women’s Health

Julia Vanella is a staff writer for Brief Policy Perspectives and a first-year MPP student.

Gender-blindness in the medical field refers to “the lack of research, analysis, and publication of sex-disaggregated data, so no differences between men and women are mentioned.” While we should strive for a world where men and women are seen as equal, the problem with this view in medicine is that differences between men and women exist on a biological level. The failure to recognize that men and women have different health needs jeopardizes the success of the  interventions performed by the government to protect the public’s health. Historically, researchers have excluded women from participating in medical studies and drug trials, leaving women at a disadvantage by being underrepresented in medicine, and when they are included, the data is often not analyzed with gender as a possible variable of analysis. 

The Male Default Bias

From the earliest days of medicine, doctors and researchers have considered women inferior to men. Aristotle declared that women were initially men whose development ended too early in the womb. He regarded women as the “mutilated male,” presenting the world with the idea that women are inherently less than men. In his view, women had already failed to live up to the ideal that was the male body. 

While doctors today do not refer to female patients as mutilated males, the overrepresentation of male bodies as the norm body in the medical field remains.   A recent study of 17 anatomy textbooks used in Australian schools suggests that the images in the texts were predominantly male except within the sex-specific chapters. Due to the underrepresentation of  female anatomy in medical textbooks, medical students may assume that women’s bodies react to medicinal procedures the same way as a man’s, and that no differences exist. 

How Women’s Health Differs From Men’s

 The lack of women’s representation in textbooks and other instructional guides lends to a dangerous and potentially life-threatening assumption as women’s bodies do not operate the same as men’s. In fact, studies show that women present different symptoms for heart attacks than men. Women’s symptoms are often subtler and harder to detect, and medical professionals often refer to women’s heart attack symptoms as “atypical.” These symptoms may include stomach pain, breathlessness, nausea, and fatigue. Other symptoms of heart disease, noted by the Centers for Disease Control and Prevention (CDC), include pain in the neck, jaw, or throat, pain in the upper abdomen or back, angina (a heavy or sharp pain in the chest), or even no symptoms. According to the CDC, heart disease is the leading cause of death for women in the United States, killing 299,578 women in 2017, or approximately 1 in 5 female deaths. A study conducted at Leeds University in England suggests that women are 50 percent more likely than men to receive a misdiagnosis after a heart attack. Since these symptoms deviate from the usual heart-clenching symptoms seen in movies or on television, many doctors tend to overlook the recorded symptoms leaving women at risk for greater health issues.

Medical research has excluded women patients because of specific female characteristics such as hormone fluctuations due to menstruation, pregnancy, menopause, oral contraceptives, or fear of potentially harming fetuses. When women participate in drug trials, researchers do not account for how these changes in hormones will affect women who may take the drug. When women are included in research, participants are usually tested in the early follicular phase of their menstrual cycle, when hormone levels are at the lowest level to reduce the potential impacts hormones may have on the study’s results. Research that includes this practice leaves uncertainty regarding how high levels of hormones may influence and affect both women’s health and the drug’s performance. However, the questions surrounding the ambiguity of how the drug will react in combination with women’s hormones opens the possibility of excluding women from trials and research completely. 

In 1977, a Food Drug and Administration (FDA) policy recommendation excluded women who are capable of bearing a child from Phase I and early Phase II of drug trials. This was due to the drug “thalidomide” that was marketed in 1960. Thalidomide was advertised as safe for everyone including pregnant women, and the company marketed the drug to pregnant women for morning sickness despite the drug’s lack of approval for sale in American markets. However, in 1961, a doctor who heavily prescribed the drug to expecting mothers found that the drug caused serious birth defects in babies the doctor delivered. Due to the severe adverse effects caused by the drug, the FDA discouraged fertile women from participating in the early stages of drug testing until the policy recommendation ended in 1993.

Policy Implications

In 1986, the National Institute of Health (NIH) established a policy that encourages researchers to include women and minorities in studies. If researchers chose to exclude women and minorities from their proposed studies, then the researchers involved would have to include justification for the omission. In 1990, the Congressional Caucus for Women’s issues asked the General Accounting Office (GAO), now known as the General Accountability Office, to investigate the NIH’s implementation of the guidelines requiring the inclusion of women and minorities in drug trials. The GAO discovered that the policy was written poorly and had done very little to promote researchers to aggregate the results by gender. Approximately two months later, NIH created the Office of Research for Women’s Health (ORWH), which is the first Public Health Service office committed to advocating for women’s health research within and outside of NIH. Although the inclusion of women in clinical research was a policy established by NIH, it had not yet become law. It was not until 1993 when Congress wrote the NIH inclusion policy into law, entitled Women and Minorities as Subjects in Clinical Research. This law guarantees, but is not limited to, the inclusion of women and minorities in all clinical research, and researchers should design and execute trials containing women and minorities so that one can determine if the drug affects women and minorities differently than other participants.

Looking Towards the Future

While the policy passed by Congress was influential in the clinical trials process, more work needs to be done to ensure that women are widely represented in these trials. Although the law states that trials must include women, it may prove difficult to enforce this law since every study is different. As of today, researchers have not produced enough research on understanding who certain ailments affect and the varied consequences certain symptoms can have on a person depending on their gender. Since only a minimal amount of medical research throughout history has focused on women, we do not yet know the effects of the lack of women-focused trials, including how many health issues have gone unnoticed and undiagnosed because women in medicine have not been extensively studied.

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