The National Institutes of Health’s recent decision to designate sexual and gender minorities as a “disparity” population for research purposes was welcomed by researchers and advocates for the LGBT community.

“I am excited about this because some of the work that I do is with populations of gay men and transgender women,” says Brandon Brown, PhD, MPH, a researcher and assistant professor in the Center for Healthy Communities at the University of California, Riverside School of Medicine. “This really opens up the opportunity for researchers like me to submit [research] projects. It also gives credence and credit to this population — at least in the HIV field — as one that faces significant health disparities.”

In addition to forging new paths for research, the NIH move will add credence to including LGBT factors in studies in general, says Kellan Baker, a senior fellow for the LGBT Research and Communications Project at the Center for American Progress in Washington, D.C.

“If we expect to be able to craft effective solutions for closing these health disparities, we really need researchers to be understanding that sexual and gender minority participants are in their studies already and they need to be counted,” he tells IRB Advisor. “There needs to be more studies looking specifically at the experiences of sexual and gender minority populations.”

By regulatory authority, the director of the National Institute on Minority Health and Health Disparities (NIMHD) at the NIH, in consultation with the director of the Agency for Healthcare Research and Quality (AHRQ), can define health disparity populations. According to an NIH statement on the action, the term sexual and gender minority (SGM) includes “lesbian, gay, bisexual, and transgender populations, as well as those whose sexual orientation, gender identity and expressions, or reproductive development varies from traditional, societal, cultural, or physiological norms.”

“We currently fund sexual and gender minority research across many of the institutes and centers at NIH,” says Karen L. Parker, PhD, MSW, director of the SGM office at the NIH. “The NIMHD is one of those institutes. However, they fund a much smaller proportion than some of the other institutes and centers. This designation does not specifically provide additional funding for research, but it does help validate the field of sexual and gender minority research as a relevant and important area for investigators to pursue.”

While underscoring that the NIH is committed to increasing research in this area, Parker echoes Baker’s point that new disparity designation also signals investigators that it is important to collect and analyze SGM-related data in other types of research, she says.

“We are hoping that investigators who may not have previously considered collecting data in the SGM population, or even asking the questions to know who within their populations are members of a sexual and gender minority community, will begin to ask those questions so that we will have more and better data,” Parker tells IRB Advisor. “A lot of times people do trials and they ask a lot of demographic information, but they are not asking about sexual orientation or gender identity. Then they are unable to analyze the data by sexual or gender minority populations. So, we are hoping that this encourages people to find out who within their study populations are part of a SGM.”

In that regard, IRBs could encourage the inclusion of such data in research under review, she adds.

“If someone is doing a study on ‘x’ and we don’t know if there is a higher burden in sexual and gender minorities, maybe IRBs could encourage researchers to ask who in their population is a sexual or gender minority so that they can include that in the analysis,” Parker says. “It’s important for IRB members to understand that we do see differences in health outcomes and health-seeking behaviors by SGM versus heterosexual and [non-minority] gender individuals.”

Toll of Stigma

The traditional NIH structure finds research focused around specific diseases or conditions, which do not address the breadth of health challenges faced by the SGM population. “For example, things like resiliency or how does family rejection impact health?” she says. “A lot of these types of questions may be related to structural stigma.”

Structural stigma in communities with high levels of anti-gay prejudice was shown in one study to shorten life expectancy by 12 years for sexual minorities. “Analysis of specific causes of death revealed that suicide, homicide, violence, and cardiovascular diseases were substantially elevated among sexual minorities in high-prejudice communities,” the researchers found.1

HIV and AIDS disproportionately affect black and Latino men who have sex with men and transgender women, she observes. Moreover, emerging data also indicate SGM populations have less access to healthcare in general and suffer a greater disease burden of anxiety, depression, and cancer. However, previous LGBT research may be diluted in the various NIH disease categories, Parker notes.

“This [new designation] will allow those [research] applications to have a ‘home’ at the NIH, where before it was a little more difficult to find a more appropriate place where that research was in the mission of a specific institute,” Parker says. “In terms of money, NIH can’t fund what doesn’t come in, so we are hoping that this will encourage people to do research in this area. The more applications we get, the higher the chance of getting applications funded.”

Research has shown that there are certainly unique heath challenges, and in the absence of more data there are troubling unknowns afflicting this population.

“There are a lot of unanswered questions related to health disparities because people haven’t been identifying this population in their research,” she says. “NIH is really committed to research in this area and we’re committed to encouraging scholarship in this area. We want science to be a welcoming place for SGM researchers.”

It wasn’t always that way. Despite few words of encouragement, Baker has long labored to get the NIH to make the designation change.

“I am a researcher myself, and when I entered the world of LGBT health about 10 years ago, it was told to me by many people that I needed to get this LGBT thing out my system because it wasn’t going to be a viable career path,” Baker says. “It wasn’t some place where I could expect to have support, interest or traction with policymakers and researchers [in order to] figure out what disparities were affecting the LGBT community and actually do something about it. There have been many people who have worked on this issue for a long time — issues of LGBT health and health disparities and getting this on the federal agenda.”

For example, in the 1990s there was a struggle to deal with HIV health disparities and the incidence of breast cancer in lesbian and bisexual women, he says.

“We really struggled as a community for a number of years to educate and establish the legitimacy of what the facts were showing, which is that the LGBT population does experience significant health disparities,” Baker says. “[The NIH action] will provide emphasis and support for younger researchers who are considering entering a field where they are looking at LGBT health disparities, and seeing that this is an area of legitimate scientific inquiry. This is an area where we need to understand that there are problems that are effecting different communities, and we as a country need to be developing the evidence base and figuring out strategies for addressing the problems.”

Thinking Beyond the Niche

Demographic niches cannot be parsed into neat categories, as they actually overlap in human research populations.

“Health disparities are not monolithic by any one aspect of their identity,” Baker says. “Nobody is just gay or just black or just Latina. There are many people who are living at the intersections of multiple marginalized areas. We are not able to fully address the health disparities, for example, of racial and ethnic minority populations without also taking into account disparities in minority sexual orientation and gender identity.”

Two areas that should be high on the agenda are lesbian health and bisexual and transgender people, he says.

“Bisexual and transgender people are sort of the two silent letters in the LGBT population, but they are actually very much front and center,” Baker says. “We need to be thinking beyond our traditional understanding of lesbian and gay to an understanding of folks who identify as bisexual and transgender. If you look at the social factors of poverty and discrimination on the basis of race, access to healthcare services intersects with aspects of discrimination related to sexual orientation and to gender identity. [Otherwise], we are not going to be able to get to the roots of why gay and bisexual men and transgender women are the only populations in the U.S. in which rates of HIV continue to increase. We can’t understand what’s going on there unless we are understanding how such orientation and gender identity interact with all the other aspects that drive HIV in populations.”

REFERENCE

  1. Hatzenbuehler ML, Bellatorre A, Lee Y, et al. Structural stigma and all-cause mortality in sexual minority populations. Soc Sci Med 2014;103:33-41.