Limitations and Future Directions in Sex, Sexuality, and Gender Diverse Research in Neurology
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Abstract
Sex, sexuality, and gender diversity is understudied and underserved in neurology. Neurology research inclusive of LGBTQIA+ (lesbian, gay, bisexual, transgender, queer, intersex, asexual) people is limited. Existing research struggles with a paucity of neurology studies collecting sex, sexuality, and gender diverse (SSGD) data, conflation of sex and gender, lack of precision in measures, neglect of younger and older populations, nebulous benefit to community, and absent intersectionality. Future directions in SSGD neurology research include precise and community-based measurements, respect for LGBTQIA+ colleagues, and the application of minority stress models. All patients stand to benefit from research that elucidates how SSGD variables influence neurological health. ANN NEUROL 2024;95:421–431
Sex, sexuality, and gender diversity is understudied and underserved in neurology. Some neurologists have termed inequities in evaluation, diagnosis, intervention, and outcomes “neurodisparity,” stemming from studies of neurology disparities between racial and ethnic groups.”1 The National Institute of Health (NIH), American Medical Association, American Academy of Neurology, and American Neurological Association have called for an examination of neurodisparity within neurology clinical and research practices.2-5 To effectively identify and resist neurodisparities influenced by sex, sexuality, and gender diversity, it is necessary to incorporate precise and adaptative measures of sex, sexuality, and gender diversity into research. The Common Data Element project, supported National Institute of Neurological Disorders and Stroke, includes assessments of sexual orientation, sex assigned at birth, and gender identity to promote standardized collection of data and improved comparisons across studies. As every person has sex traits, a sexual orientation, and gender identity, all our patients stand to benefit from research that elucidates how these variables influence neurological health and access to health care.
Neurology research inclusive of sexual and gender minority (SGM) people (most often defined as individuals who identify as LGBTQ [lesbian, gay, bisexual, transgender, and queer]) is limited. According to recent survey data, 7.2% of adults in the United States self-identify as lesbian, gay, bisexual, transgender, or something other than heterosexual, a statistic that has doubled over the past 10 years.6 Surveys in youth populations have indicated approximately 27% of California youth aged 12 to 17 years are gender nonconforming in some way.7 Early research on the SGM population indicate neurological disparities in headache,8, 9 sleep duration,10 cardiovascular disease risk factors,11 and stroke.11-13
In addition to including and counting patients who identify with a minoritized sexuality or gender identity (eg, LGBTQ), there is a need to expand inclusivity for intersex people with variations in sex characteristics, Two-Spirit and gender diverse Indigenous people, people with intersecting identities such as Black lesbian women, nonbinary people, asexual people, and other historically neglected groups. With the aim of expanding previous considerations of SGM research, in this paper we will collectively consider these groups as sex, sexuality, and gender diverse (SSGD) people.
To provide the best and most equitable care, neurology researchers should consider investigating patterns throughout the lifespan of neurological disease prevalence, health care access, and outcomes utilizing sex, sexuality, and gender-informed methods, in partnership with historically marginalized groups such as LGBTQIA+ people. In this narrative review article, we discuss the limitations in prior studies that have incorporated sexual orientation, gender identity, and sex characteristics (SOGISC) information, and suggest future directions in SSGD neurologic research.