Our current understanding of women’s health research—the study of health across a woman’s lifespan in order to preserve wellness and to prevent, diagnose, and treat disease, for the full range of health conditions for which women are disproportionately or differently affected by—did not exist until about 30 years ago.
Where Women’s Health Research Started
Up until the 1990s, essentially all health research was conducted exclusively or predominantly on men and by men.
For decades, women were actively excluded from participating in most clinical trials because of the belief that female hormonal cycles were too difficult to manage in experiments and a fear that the inclusion of women in trials may harm women’s reproductive health, including potential pregnancies. Additionally, the assumption that using only one sex would reduce variation in trial results meant that research also did not incorporate female animals, cells, and tissue. Researchers, therefore, often assumed that results from all-male studies could be extrapolated to females—compromising women’s health care.
The Society for Women’s Health Research (SWHR) was founded in 1990 by Dr. Florence Haseltine to correct this balance and bring attention to the space of women’s health research. Soon after its founding, SWHR joined other advocacy groups to encourage Congress to pass the National Institutes of Health (NIH) Revitalization Act of 1993, mandating the inclusion of women and minorities in NIH-funded clinical trials. In the same year, the Food and Drug Administration (FDA) required the inclusion of women in efficacy studies and in the analysis of data on sex differences. Two decades later, in 2016, the NIH implemented a policy stating that sex as a biological variable should be factored into preclinical research and study reporting. Today, all NIH-funded researchers must either include both female and male research subjects or explain why they do not.
Continuing to Close the Gaps
Throughout the years, SWHR has actively educated on and promoted the growth of women’s health research. SWHR helped found the Organization for the Study of Sex Differences (OSSD) in 2006 and launch the Biology of Sex Differences journal in 2010. With each new program, SWHR is helping close gaps by promoting research on biological sex differences in disease and improving women’s health through science, policy, and education:
- SWHR regularly convenes interdisciplinary stakeholders to discuss women’s health topics and identify research gaps and unmet needs for women’s health across the lifespan. For example, SWHR is hosting “The Impact of Narcolepsy on Women’s Health Across the Lifespan”, a closed roundtable on March 31, 2022 with experts in psychiatry, sleep, pediatrics, and more, to better understand sleep conditions in women. SWHR will publish conversation insights on its blog in early April.
- SWHR continues to act as a resource for policymakers and pushes for the improved inclusion and representation of women from diverse backgrounds across all levels of science. SWHR continually responds to policy initiatives concerning women’s health, such as providing comments on the recent draft NIH Chief Officer for Scientific Workforce Diversity Strategic Plan and supporting the creation, work, and implementation of recommendations of the Task Force on Research Specific to Pregnant and Lactating Women (PRGLAC).
- SWHR serves as a trusted source for women’s health information and raises awareness about women’s health issues for women, their families, and their providers, particularly through the creation of resources, such as fact sheets, policy roadmaps, and patient toolkits. SWHR’s recent resources range from a Genetic Screening Poster made for use in health offices to a Migraine Matters Fact Sheet to help people living with migraine, 3 in 4 of whom are women.
Women’s Health Research in 2022
While SWHR has been excited to witness and support the expansion of women’s health research to new heights, much remains to be done to close knowledge and care gaps. As we celebrate International Women’s Day, SWHR remains invigorated about the task of advancing women’s health research and the prospect of improved care for women everywhere.
Recent improvements in women’s health provide encouragement for the future: expanded COVID-19 vaccine research on pregnant women, from the Centers for Disease Control and Prevention (CDC) has shown the vaccine to be safe for mothers and infants when administered during pregnancy; the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act has been introduced in Congress and, if passed, will advance research and care for uterine fibroids; and the Protecting Moms Who Served Act, the first bill of the Black Maternal Health Momnibus to be enacted, was signed into law in November 2021, taking us one step closer to ending maternal mortality in the United States and closing disparities in maternal health outcomes.
This year’s International Women’s Day theme of #BreakTheBias reminds us that in working together we can eliminate bias, whether it is across the scientific workforce, in funding research awards, in health care innovation, or within scientific research and clinical trials. Together, we can achieve women’s equality and advance women’s health research for decades to come.
Join SWHR in helping make women’s health mainstream. Learn more about the history of women’s health research here and SWHR’s role in it here.
This article was also reposted on SWHR’s LinkedIn account.