NINDS Recognizes 2022 June Pride Month: Closing the Knowledge Gaps for Sexual and Gender Minorities in Neuroscience

June is Pride Month, and this month has been an important time to reflect on the neurological health and well-being of lesbian, gay, bisexual, transgender, intersex people and all others who fall under the queer umbrella (LGBTQI+).  Approximately 11 million individuals identify as LGBTQI+ living in the United States in 2020. Our society, like LGBTQI+ individuals, is multidimensional, encompassing all races, ethnicities, religions, and social classes. For that reason, the NIH Office of Equity, Diversity, and Inclusion (EDI) theme for this month, Together Toward Discovery, calls for a focus on intersectionality and an understanding of how overlapping identities shape our lives, experiences, and connections with one another. To solve the mysteries of the brain and nervous system and improve neuro-health is a daunting, urgent challenge, and fostering discovery requires that the neuroscience research community embrace intersectionality and provide a safe environment where all neuroscientists can bring their whole selves to their work. I encourage you to visit the EDI website this month for more resources, and consider attending the NIH-wide panel event Together Toward Discovery: How Intersecting Identities Impact Our NIH Work with opening remarks by the U.S. Department of Health and Human Services Assistant Secretary for Health, Admiral Rachel Levine, MD.  

A diverse biomedical enterprise that is welcoming to neuroscientists from the LGBQTI+ community is critical if we are to explore the neural basis of the rich complexity of human behavior and biology. In 2017, I wrote about the exceptional scientists whose encouragement and advice shaped my career, including Dr. Ben Barres, a transgender scientist who was a fierce advocate for women and underrepresented groups in the neuroscience community, a champion for diversity and inclusion, and former member of NINDS Council. In addition, Ben was an outstanding mentor who was committed to creating safe spaces for the most vulnerable. Recognizing and continuing his legacy means addressing one of the biggest challenges in neurosciences, across basic, clinical, and translational settings: a lack of adequate training and cross-cultural education covering the needs and aspects of the LGBTQI+ community.

The NIH Sexual and Gender Minority Research Office (SGMRO) recognizes the need for LGBTQI+ related training, education, and allies in the healthcare, health research, and biomedical workforce. SGMRO, in collaboration with NINDS, the National Institute on Aging (NIA), and the National Institute on Drug Abuse (NIDA), is sponsoring a social event at the Society for Neuroscience (SfN) conference in November, aimed at cultivating a network of researchers, trainees, and other stakeholders who are interested in neuroscience research related to sexual and gender minority (SGM) populations and beyond. These and other resources, including 500 Queer Scientists, QueerInNeuro, and a recent webinar from the ALBA network on Navigating academia as an LGBTQIA+ neuroscientist,” highlight the critical need of including LGBTQI+ scientists in neuroscience communities. Today, I want to re-emphasize the importance of mentoring in biomedical research and add allyship as a powerful tool to foster the growth of neuroscientists.

Gender and sexuality are complex and interconnected topics, and research in this space should incorporate the lived experiences of SGM individuals. There are also a host of neurological conditions that require knowledge of LGBTQI+ medicine to care for patients most effectively, raising a number of research questions that researchers are only beginning to examine. These questions relate to the complex way our body contributes to our sexual orientation, and gender identity, as well as potential influence on neurologic conditions and possible impacts on disease risk. Armed with ever-sophisticated tools from efforts like the NIH BRAIN Initiative that allow us to monitor and modulate neural circuits in models, neuroscientists are beginning to better understand the mysteries of brain and nervous system. 

As we pursue research to reduce the burden of neurological disorders in the LGBTQI+ community, we need to understand the special factors that contribute to this burden of illness. Disparities in SGM health exist and the clinical neuroscience are no exception. Migraine, growth of hormone sensitive meningiomas, epilepsy, multiple sclerosis, and intracranial hypertension, among other conditions, have disparities or unique research questions for SGM populations. Furthermore, selection of medicines can require special consideration. For example, the treatment of some neurological conditions can also interact with the metabolism of hormonal treatments, and these interactions need to be considered in choosing and dosing drugs such as antiepileptic agents. 

At the very basic level, the clinical neuroscientist’s degree of rapport with the patient or study subject has profound impact on that person’s participation in research, or the degree of self-engagement in one’s own neuro-health. The extreme discrimination experienced by many LGBTQI+ persons negatively affects their relationship with healthcare, and many are reluctant to discuss their sexual identity with their healthcare professionals for fear of discrimination. The high levels of stigma and the stress in the LGBTQI+ community, when added to the stigma attached to many neurological conditions, can have a profound negative effect on patient care. It requires skill and empathy in discussing issues related to sexual identity to build the rapport that’s necessary to ensure positive neuro-health outcomes.   

We must also strive to identify and address specific challenges that hinder the well-being of LGBTQI+ individuals. In 2020, the NINDS Office of Global Health and Health Disparities, in collaboration with the NINDS Office of Science Policy and Planning, embarked on a strategic planning process to address health disparities and inequities in neurological disorders through research.  As a culmination of the strategic planning process, NINDS hosted a Health Disparities and Inequities in Neurological Disorders Workshop (HEADWAY), with an overarching goal of identifying evidence-based interventions that are feasible and widely scalable, to diminish disparities and inequities in neurological disorders. The workshop assembled subject matter experts in various disciplines, including in Sexual and Gender Minority (SGM) research. Dr. Nicole Rosendale, described that a major challenge in training neurological care providers is the use of correct pronouns to improve the patient response and determine the proper medical/research concerns.

In 2020, the National Academies of Science, Engineering, and Medicine (NASEM) published a report focused on health and overall quality of life for LGBTQI+ identified individuals. The report indicated significant societal, political, and legal challenges for the LGBTQI+ community. In addition, the report gave a comprehensive review of the improvements and challenges of LGBTQI+ identified individuals in multiple facets of life, including physical and mental health. However, the report also pointed to the significant knowledge gaps in reliable, meaningful data on gender identity, sexual orientation, and non-binary sex. To effectively address SGM health issues, we need to improve the collection of data on sexual orientation and gender identity (SOGI) in national surveys and health records.  

To address this gap, the NIH commissioned NASEM to conduct a comprehensive report on current methods for collecting data on sex, gender minority, and sexual orientation, as well as proposed recommendations. NINDS was a co-funder of this report, on measuring sex, gender identity, and sexual orientation in healthcare research. The report serves as the cornerstone to further enhance diversity and inclusion in data collection for the healthcare and biomedical workforce. Recognizing the need to prioritize research on this important topic, NINDS participates in the Notice of Special Interest (NOSI): Administrative Supplements for Research on Sexual and Gender Minority (SGM) Populations (NOT-OD-22-032) which aims to provide funding for the expansion of existing research projects to incorporate SGM populations or SGM-relevant research questions. Additionally, we are participating in the NOSI in Research on the Health of Sexual and Gender Minority (SGM) Populations (NOT-MD-19-001) which aims to increase research on the health of sexual and gender minority populations. Finally, President Biden signed an executive order on June 15 to promote expanded federal data collection on sexual orientation and gender identity, including establishing a new federal coordinating committee on SOGI data. The group which will lead efforts across agencies to identify opportunities to strengthen SOGI data collection, while safeguarding privacy protections and civil rights for LGBTQI+ individuals. As we progress in this space, NINDS is deeply committed to supporting efforts that address these knowledge gaps in SGM-related healthcare.

Even as we celebrate strides forward this Pride, I want to re-affirm our commitments to improvements in data reliability, inclusivity of neuroscience, and cultivation of cultural education in mentorship and training. At NINDS, our leadership are deeply committed to creating a diverse, inclusive, equitable, and accessible environment, and to nurture science that will advance neuro-health for all people.