Lesbians Don’t Participate in Health Care Studies—and That’s a Problem

Would you take a survey from this woman?


On June 5, 2016, New York University’s Center for Health, Identity, Behavior, and Prevention Studies launched a study into how lesbians between the ages of 18 and 29 access health care.* We figured that we would have no problem surveying 200 lesbians during Pride month—after all, we could recruit at the Dyke March and at the city’s massive Pride parade. We were even offering $5 in cash to anyone who would complete a survey at several of the season’s outdoor festivals. Besides, we had easily recruited around 800 gay men for a parallel study. So simple, we thought. So wrong we were.

By the end of June, we had recruited just 71 participants, and we would soon enter a dry spell where we didn’t recruit anyone at all for weeks. When we were recruiting outside bars, women would say they didn’t want anything to delay their first drink; some claimed to have philosophical issues with research; still others didn’t want to hold up their party if even one member of the group said no to the survey; and at least one lesbian was convinced we were raising money for Greenpeace.

Those of us on the research team kept putting ourselves out there, cautious yet hopeful that we would finally find the one. The one woman who would identify as a lesbian, would be between 18 and 29, and would want to take our survey. The one who would end the constant rejection. But she didn’t appear until Sept. 17, and by then we had decided to reduce the study sample to 100 participants.

It would take us another month to finally recruit the remaining 28 lesbians needed for our study. Overall, it took us five summer months to find 100 lesbians. To put this in perspective, it only took us seven months—winter months at that—to find 800 gay men. In research terms, five summer months, when people are out and about, lightly dressed, and looking for quick cash to buy food at outdoor street fairs is an eternity compared with seven winter months. In the winter, New York City is a barren tundra populated by humans wearing the equivalent of full-body sleeping bags, who are unwilling to linger outdoors for one millisecond longer than absolutely necessary.

Leading health agencies have identified several health disparities faced by lesbians. They experience higher rates of obesity, intimate partner violence, and delayed cancer diagnosis, while simultaneously experiencing more limited health care access and lower rates of insurance coverage. Only 73 percent of the women who took our survey had a primary care provider, and 27 percent had skipped getting medical care when they needed it. The question remains, why couldn’t we find lesbians to participate in our study?

Even superqueer New York City has a lack of explicitly lesbian spaces, though the same isn’t true for gay male venues. We could only recruit at four lesbian bars, while we had more than 30 gay men’s bars to choose from. This meant we were going to the same places over and over in search of study participants—the same places where we’d failed to sign anyone up the week before. The disappearance of lesbian bars isn’t unique to New York City, of course; lesbian bars are closing all across America, but if there are only four lesbian bars in a city of 8 million, just imagine the challenges we would have faced in a smaller metropolis.

Signing up participants for a research project on lesbians was also tricky because identity works differently for women. A recent study by Notre Dame’s Elizabeth McClintock found that female sexual identity is more flexible and adaptive than male sexual identity. Our study echoes this understanding of the complex and intersectional female identity. Of the 200 women McClintock screened, 37 percent defined their sexual orientation as something other than lesbian. These identities included bisexual, gay, pan, asexual, free, and omnipotent. McClintock also suggests that sexual identity is, in part, a social construct, and women are more reluctant to construct their identity based on factors outside themselves. When a woman identifies as a lesbian, this identity is a reflection of her partner’s female sex. Sexual identity becomes more challenging for women who are in relationships with gender-fluid or gender-nonconforming partners. Women in these relationships often opt for the more inclusive term queer. (To be sure, queer isn’t exclusive to people with gender-fluid or gender-nonconforming partners. Many women who only date cis-female–identified women also choose to identify as queer.)

The scientific community hasn’t conditioned lesbians to participate in research in the way it has gay men. A PubMed search of the scientific literature from the past 10 years found 135,266 health articles on women, 882 of which were about lesbian health. That’s less than 0.7 percent of the scientific literature. Compare that with a similar search of men’s health articles—66,306 total articles with 1,401 on gay men’s health, or 2.1 percent of the scientific literature.

Nowhere is this discrepancy more evident than in the plethora of research on HIV/AIDS. Gay men are used to participating in HIV/AIDS research, while women, especially lesbians, are not. In fact, many lesbians living with HIV feel invisible, despite their unique risk factors. (Although HIV transmission among lesbians is rare, vaginal fluid, menstrual blood, and sex toys that haven’t been properly cleaned provide transmission risks.) Even in broader women’s health research, which primarily focuses on birth control services, lesbians are left out. Missing this entry point into health care has major ramifications for sexual health later in life, including lower rates of Pap testing and higher incidence of cervical cancer among lesbians. Researchers often have incorrect assumptions about the health care needs of lesbians, specifically that they have no risk of STIs, HIV, and pregnancy.

There’s not much the scientific community can do to change the loss of lesbian spaces, but researchers can and should conduct research on shifting identities. This is especially critical during the period of early adulthood, generally defined as 18–29, when people are establishing themselves as entities separate from their parents and family. Currently, very little research looks at that entire 11-year time span. Would your 29-year-old self recognize your 18-year-old self? Do they want the same things? More than likely not. The lack of longitudinal research isn’t specific to lesbians, per se, but the problem is magnified because lesbians aren’t studied as frequently—and very rarely when they are young. Needless to say, this could be a function of the difficulty of recruiting lesbians into scientific research.

The scientific community desperately needs to improve its understanding of lesbian health issues, and in order to do that, we need to conduct research within the community. So, if you are a woman who loves women, the next time a researcher asks you to take a survey, say yes. You’ll be helping the community and science. And right now science needs all the help it can get.

* Correction, Dec. 21, 2016: This post originally misstated the year in which the research project began.

Read more of Outward’s Lesbian Issue.