Because women tend to participate in medical research less frequently than men, there is speculation that this lack of testing can be damaging to the health of women in general, according to a report from Brigham and Women’s Hospital.
After evaluating the research completed on four major diseases, the study, published Monday, concluded that women were only a small percentage of test subjects, hindering the effectiveness of medical results and leading to a lack of knowledge about how certain drugs affect women.
The publication of the report marks the anniversary of the 1993 National Institutes of Health Revitalization Act, which seeks to increase the presence of women and minorities as subjects of clinical research.
“That was one of the key moments in expanding research on women’s health,” said Susan Wood, co-author of the report. “We are marking 20 years of progress, but are also identifying the work that remains to be done.”
While the report concludes that women and minorities are currently inadequately considered when doing medical research, it does not include the reasons behind why they tend to be unaccounted for.
“Twenty years ago, it was said that it was simpler to study a homogeneous population and therefore young white men were easiest to do [studies on],” Wood said. “Part of it is that the researchers are not thinking, part of it is that the policies are not being enforced, and part of it is, again, the perception of it being simpler, and we just do it the simple way.”
Ellen Weinberg, research assistant professor at the Boston University Medical School, said the underrepresentation of women is mostly about simplicity.
“When women and minorities are neglected in medical research, it is due to the desire to control for variables rather than a deliberate omission,” she said. “Controlling for all the confounding variables may require larger sample sizes, which increases the need for greater person-power, statistical power and financing.”
One of the main goals of the report is to promote transparency in order for patients to make informed decisions, Wood said.
“We want to really make it apparent when there is not adequate data, so some of our recommendations are focused around labeling products, labeling studies that do not include women or do not analyze by sex,” she said. “We should put that both on our research studies in our journals and also on our medical products … if there is no adequate data to know whether the product works on women.”
Gerald Denis, associate professor of pharmacology and medicine at the Boston University School of Medicine, said the report is significant because different genders and races are likely to have different outcomes in studies. However, diversifying the subjects of clinical research might prove harder than it seems.
“There are often very significant differences within groups that you might think would be fairly homogenous,” he said. “You might think that saying, ‘We are going to restrict this study to African-American women,’ will narrow the intra-group variance, but actually that may not even be the case.”
Greater variance in the subjects studied also requires greater resources, which might be a deterrent for more inclusive research. Denis said he hopes people realize how important their tax dollars are for sponsoring this more in-depth research and encouraged the public to take “fiscal responsibility” for it.
Several residents said research should be gathered through a diverse pool of participants so it is applicable to everyone.
Amy Cherie, 45, of Brighton, said the absence of women in medical research has been a problem for years, and it needs to be resolved.
“For years, medical research was only done on men, so a lot of things for women have fallen through the cracks,” she said. “Not only physically but also mentally, they did not do psychological testing on women. Everything was done on men. They do not know women’s body.”
Alan Schultz, 24, of Allston, said the inclusion of women in studies is not always necessary to make the research valuable.
“It depends on the procedure and it depends on the type of study they are trying to run,” she said. “Sometimes they know if these differences [matter], and other times, they know there is not a difference, so they do not need to account for it.”
Katie Bresnahan, 23, of Brighton, said the use of women in medical studies would give her a piece of mind when using the information for personal purposes.
“I would think that it would be detrimental,” she said. “It seems that it is important information to know when you are testing. If it works on people similar to me, then it would probably work.”