Hannah Peters | Staff Writer
While we have made great strides in terms of women’s equality, one aspect that has yet to catch up and often goes unnoticed is representation in medical and scientific research.
Up until 1993, women were not required to be included as participants in clinical research. In fact, a 1977 FDA policy even barred women of “childbearing potential” from early-phase clinical trials in addition to women who used contraception, who were single or whose husbands were vasectomized.
Despite the removal of the 1977 policy, its sentiments remain a central reason for why women account for just 29% to 34% of participants in early-phase clinical trials funded by the pharmaceutical industry.
According to a study from the Society for the Study of Social Problems, since the late 1990s medical health policies have employed two conflicting frameworks: one that demands women should be equally represented in biomedical research and another that implements policies emphasizing women’s participation in health-promoting behaviors for the sake of future pregnancies.
The conflict is found from the fact that clinical trials can begin while nonhuman testing is still in progress meaning there is often inadequate data on “reproductive toxicity and potential for teratogenic effects on fetal development,” according to the study.
Subsequently, concerns for future children tend to take the forefront and “women of childbearing potential are often not given the choice to enroll in a trial that could adversely affect a fetus, even when those women have no plans to become pregnant in the near future,” the study said.
Their findings also build on prior conceptual frameworks like author Miranda Waggoner’s “anticipatory motherhood” which she explains is “a framework that positions all women of childbearing age as ‘prepregnant’ and exhorts them to minimize health risks to phantom fetuses and future pregnancies.”
This approach is problematic, though, as it eliminates the woman’s choice to decide, and it patronizes women as a whole, treating them as if they are children who need somebody to make decisions for them. Not only this, but this problematic approach to research assumes all women will choose the path of motherhood which is simply not reality.
As Waggoner puts it, this “exalts women as mothers and not women qua women.”
Clearly, no one wants to bring harm to any future pregnancies. If women are informed of the risks involved then there is no need to make choices for ALL women. Especially when this framework fosters a lack of support of proper research and minimizes the individual health needs of women.
Thankfully, these ideas have had less of a hold in other areas of research where the picture of women participation is a little less bleak.
From 2016-2019, an average of 41.2% of adult cardiovascular, psychiatric, and cancer-related clinical trial participants were female, according to a study from Harvard Medical School.
However, the disparity is greater for psychiatric disorders, where females make up 60% of the patient population, but just 42% of trial participants.
Even with improvements being made to increase inclusivity and fair representation in research, an important aspect is often overlooked — that men and women’s health are not the same.
Differences in biology mean disease and medicine affect each sex differently, but the majority of research has treated them as the same.
In fact, it was not until 2016 that the NIH required scientists to “consider sex as a biological variable” in order to receive NIH grant funding.
Even after this policy, it was found that only 4% of published papers provided a reason for why they did not use both sexes or why they failed to analyze data by sex, according to a study from Northwestern University.
“The implications of not analyzing research data by sex are endless,” said Nicole Woitowich, associate director of the Women’s Health Research Institute at Northwestern University in a news release. “When we fail to consider the influences of sex in biomedical research, it’s like we’re trying to put together a puzzle without all the pieces.”
With previous and even current research failing to properly include and consider women, we are left with a gap in medical knowledge and the effects of this are clear.
For instance, women experience adverse effects from medications at twice the rate of men, according to a University of California study.
A study done by the NIH found that across 112 acute and chronic diseases, women experience longer time to diagnosis and are older than men when diagnosed.
Additionally, women and racial and ethnic minorities in the U.S. are 20-30% more likely than white men to experience a misdiagnosis, according to the British Medical Journal.
Racial and ethnic minorities have also historically been left out of research studies. This is evidenced by the fact that Black women are three times more likely to die from pregnancy-related causes than white women, according to the CDC.
Further, the U.S. has the highest infant and maternal mortality rate compared to any other high-income nation. Studied by the Commonwealth Fund, maternal death rates are more than three times the rate in most of the other high-income countries.
Ironic, considering that concern for future fetuses is prioritized over sufficiently understanding women’s health.
Fortunately, there has been some movement being made to remedy poor efforts in women’s health. Most recently, President Joe Biden issued an executive order in March to advance women’s health studies, calling on Congress to invest $12 billion in new funding for women’s health research.
Hopefully, this is a sign that knowledge on women’s health is on its way to catching up. But for now, one thing is for certain — women have been left out of medical advancements for far too long.