Even though it’s been twenty years since federal legislation passed that required women receive representation in government-funded medical studies, it would appear that it’s still a man’s world. Even though things have improved and women’s health has grown into its own field, women are still grossly under-represented in medical research, according to the report released by the Connors Center for Women’s Health at Brigham and Women’s Hospital in Boston, and the Jacobs Institute of Women’s Health at George Washington University in Washington. The report was presented Monday at the Women’s Health Summit.
The discrepancies are glaring at all levels of research, from the laboratory all the way to the general practitioner’s office. Even though scientist’s understanding of women’s health issues has expanded beyond “they have ovaries,” research still tends to ignore potential biologic and physiologic differences between men and women when it comes to illness.
“The science that informs medicine routinely fails to consider the impact of sex and gender, and this occurs at some of the earliest stages of research — from animal to human studies,” said report author Dr. Paula Johnson.
For instance, two thirds of all Alzheimer’s sufferers are women, and women are twice as likely to contract the disease. Despite this, the prevailing medical wisdom is that this is the case simply because women tend to live longer than men. However, “the impact of hormonal changes at menopause and sex differences in gene expression have begun to emerge as potential explanations,” note the authors in the study.
The hits keep coming. Lung cancer is the leading cause of cancer death in women, claiming more lives than breast, ovarian and uterine cancers combined. Even though 20% of women who die from it have never smoked, non-smoking women are three times more likely than non-smoking men to develop lung cancer.
Why? Researchers aren’t sure, because women are less likely to enroll in studies and when they do, results aren’t broken out by sex, hormone status or other gender-specific conditions. It’s a similar story with cardiovascular disease. It’s the number one cause of death in women and affects men and women differently at every level, yet only a third of study participants are female.
“We still have a lot of bias embedded in academic medicine, and certainly it comes down to the people actually doing the studies,” said Dr. Eve Higginbotham, vice dean for diversity and inclusion at the Perelman School of Medicine at the University of Pennsylvania, in Philadelphia. “Women are still struggling to get to the highest levels of academic medicine. In many cases, women are not the primary drivers in many of these studies.”
Moving forward, the report suggests the following courses of action:
- Hold federal agencies accountable.
Promote transparency and disclosure regarding the absence of sex- and gender-based evidence in research, drugs and devices.
- Expand sex-based research requirements
Adopt clinical care practices and training curricula that incorporate a sex- and gender-based lens in care and research.
The report also notes that it’s up to all women to do their part and make their voice heard in the medical community. Given that it’s been two decades since the NIH Revitalization Act was signed into law, it’s obvious that changes won’t happen overnight.
“Change takes time, and it’s going to take a number of factors to drive that,” Higginbotham said. “Having the summit is a good first step in at least acknowledging the lack of progress that has been made and making people more aware.”