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Updating the Definition of Sexual and Gender Minority Populations in NIH-Supported Research

Purpose

This notice announces a revision to the definition of sexual and gender minority (SGM) populations for NIH-supported research.

Implementation Timeline

This Notice is effective upon its release date.

Background

SGM-Specific Health Disparities and Structural Barriers

Statistics indicate that as of 2024, nearly eight percent of the U.S. population identifies as LGBT, with much of this growth attributed to increases in LGBT identification among younger generations. In recent years, policies and laws have been enacted in support of LGBTQI+ communities and their well-being. For example, the 21st Century Cures Act included provisions for the NIH Director to encourage efforts to improve research related to the health of sexual and gender minority (SGM) populations, including to increase participation of SGM populations in NIH-supported clinical research and to facilitate the development of methods for conducting SGM research. SGM people were designated as a population with health disparities for NIH research in 2016 by the Director of the National Institute on Minority Health and Health Disparities in consultation with the Director of the Agency for Healthcare Research and Quality. The NIH SGM health research portfolio has steadily grown and diversified since 2015.

However, members of SGM communities still face unique and significant disparities and barriers across domains such as physical, mental, and behavioral health; social and structural determinants of health; and healthcare access and quality. This includes higher SGM group-specific rates of and risks for some chronic health conditions (e.g., arthritis, asthma, cardiovascular disease, diabetes, certain forms of cancer, and HIV/AIDS), depression, anxiety, eating disorders, substance use, smoking, stigma, discrimination, bullying, using preventive health services less frequently, and negative experiences in healthcare settings.

Health disparities and structural barriers may be uniquely magnified for SGM individuals who are also in other marginalized social categories, such as racial and/or ethnic minoritized populations, people who are socioeconomically disadvantaged, people with disabilities (e.g., physical, hearing, and intellectual), older adults, people experiencing or who have experienced incarceration, veterans, people experiencing houselessness or housing instability, people with limited English language proficiency, people living in underserved geographical areas, and people living with HIV. SGM people may experience SGM-specific disparities and structural barriers in addition to those stemming from other facets of their identity and related systems of oppression. Intersectional factors can have complex synergistic effects on health and are important to consider for more holistically understanding and addressing SGM health and well-being.

The Sexual & Gender Minority Research Office and the NIH SGM Research Strategic Plan

The Sexual & Gender Minority Research Office (SGMRO) was founded in 2015 within the NIH Office of the Director’s Division of Program Coordination, Planning, and Strategic Initiatives. The office advances SGM health research by developing and coordinating health- and research-related activities at the NIH in collaboration with the agency’s institutes, centers, and offices. One of the office’s primary charges is to lead the implementation of the NIH-wide SGM Research Strategic Plan, the most recent of which is the NIH Strategic Plan to Advance Research on the Health and Well-being of Sexual and Gender Minorities FYs 2021-2025. This plan outlines key overarching considerations, scientific themes, and research opportunities. It also defines operational goals in the field for the entire agency across four areas:

  • Goal 1: Advance rigorous research on the health of SGM populations in both the extramural and intramural research communities
  • Goal 2: Expand SGM health research by fostering partnerships and collaborations with a strategic array of internal and external stakeholders
  • Goal 3: Foster a highly skilled and diverse workforce in SGM health research
  • Goal 4: Encourage data collection related to SGM populations in research and the health research workforce

Revised Definition

“Variations in sex characteristics” (VSC) is a term more commonly used by people with intersex traits and/or who identify as intersex. This has supplanted the term “differences of sex development” (DSD) which is a term coined by and primarily used by health professionals in a medical context. Health researchers and community advocates support the use of VSC instead of DSD. Thus, to better reflect current lesbian, gay, bisexual, transgender, queer, intersex, and other SGM (LGBTQI+)-related terminology, the NIH definition of SGM populations for research is revised with this notice to read as follows:

Sexual and gender minority (SGM) populations include, but are not limited to, individuals who identify as lesbian, gay, bisexual, asexual, transgender, non-binary, Two-Spirit, queer, and/or intersex. Individuals with same-sex or same-gender attractions or behaviors and those with a variation in sex characteristics are also included. These populations may also encompass those who do not self-identify with one of these terms but whose sexual orientation, gender identity or expression, or biological traits are characterized by non-binary constructs of sexual orientation, gender, and/or sex.

NIH wants to make clear that this change in definition is intended to enhance inclusivity and does not exclude any person or population included under previous definitions of SGM populations for NIH.

Inquiries

Please direct all inquiries to:

Sexual & Gender Minority Research Office (SGMRO)
Email: SGMRO@nih.gov 

NSF: Proposals Impacting Tribal Nation Resources & Interests

As of 5/20/2024, NSF proposals that may impact the resources or interests of a federally recognized Tribal Nation will not be awarded by NSF without prior written approval from the official(s) designated by the relevant Tribal Nation(s).

Proposers must:

  • Seek guidance from the potentially impacted Tribal Nation on activities that require review and prior approval from that Tribal Nation’s authorized designee.
  • Submit a written request to the relevant Tribal Nation (based on their guidance), for approval to carry out the proposed activity that requires their review and approval.
  • Complete the checkbox for “Potential Impacts on Tribal Nations” on the Cover Sheet. Note, lead organizations are responsible for this on collaborative proposals & proposals with subawards considered a single unified project.
  • Upload one of the following into “Other supplementary documents” of Research.gov:
    • a copy of the written request to the relevant Tribal Nation to carry out any proposed activity/activities that may require prior approval from them
    • written confirmation from the Tribal Nation(s) that review and approval is not required
    • a copy of relevant Tribal Nation approval

Review NSF’s  Proposal & Award Policies & Procedures Guide (PAPPG) (NSF 24-1), CH2 E10, Seeking and Obtaining Tribal Nation Approval for Proposals that May Impact Tribal Resources or Interests.

Overview of Grant Application and Review Changes for Due Dates on or after January 25, 2025

This notice provides the research and research training community an overview of application and peer review changes impacting grant applications submitted for due dates on or after January 25, 2025, including:

  • Simplified Review Framework for Most Research Project Grant Applications
  • Revisions to the NIH Fellowship Application and Review Process
  • Updates to Reference Letter Guidance
  • Updates to NRSA Training Grant Applications
  • Updated Application Forms (FORMS-I)
  • Common Forms for Biographical Sketch and Current and Pending (Other) Support

Although each of these initiatives has specific goals, they are all meant to simplify, clarify, and/or promote greater fairness towards a level playing field for applicants throughout the application and review processes.

NIH will release additional details and guidance on these initiatives throughout 2024 which will be cross-referenced in this notice as well. For further information, visit this link: NOT-OD-24-084: Overview of Grant Application and Review Changes for Due Dates on or after January 25, 2025 (nih.gov)

Sykes Lead Authors Study of Shifting Mortality Trends in U.S. Prisons

Research about mortality rates in jails and prisons remains limited despite significant advancements in the availability of criminal legal system data in recent years. A recent study from CSDE External Affiliate Bryan Sykes (Cornell University) and co-authors attempts to fill this gap with analysis of prisoner mortality across 44 states from 2000 to 2014. Findings demonstrate a sharp decline in prisoner mortality, particularly among older men, with the most significant life-expectancy gains seen in Non-Hispanic Black men. However, the study also raises concerns about discrepancies in reported death data, suggesting that underreporting may obscure the true scope of racial disparities in prison mortality. Read the full study here.

Navigating Ambiguity: Imprecise Probabilities and the Updating of Disease Risk Beliefs – Dr. Jason Kerwin

When: Friday, March 7, 2025 (12:30-1:30PM)

Where: 360 Parrington Hall and on Zoom (register here)

We are looking forward to hosting Jason Kerwin (Economics, UW) on Friday, March 7th in Parrington Hall 360 and on Zoom. This seminar is co-sponsored by the Population Health Initiative. 

Probabilistic risk beliefs are key drivers of economic and health decisions, but people are not always certain about their beliefs. We study these “imprecise probabilities”, also known as ambiguous beliefs. Imprecision is measurable separately from the level of risk beliefs, and higher imprecision leads to more updating of beliefs in response to a randomized information treatment. New information also causes changes in imprecision levels. We can map our data onto both a standard Bayesian model and a version that is designed to handle imprecise probabilities; these models match some features of our data but not all of them. Imprecise probabilities have important implications for our understanding of decision making and for the design of programs intended to change people’s minds.

Jason Kerwin currently a tenured Associate Professor in the Department of Economics and a Brimmer Distinguished Scholar at the University of Washington, an Affiliated Professor at J-PAL, and a Research Fellow at IZA. He received his Ph.D. in Economics from the University of Michigan, where he was also an Economic Demography Trainee at Michigan’s Population Studies Center. From 2015 to 2024 he was on the faculty of the Department of Applied Economics at the University of Minnesota. Jason’s research focuses on understanding the choices people in developing countries make about health, education, employment, and savings. To do this he combines randomized field experiments and other compelling causal inference methods with cutting-edge methods from econometrics and machine learning. Jason has done fieldwork in Malawi, Uganda, India, and Egypt. His papers have been published in journals that include the American Economic Review, the Journal of Econometrics, the Review of Economics and Statistics, and the Journal of Development Economics.

Cohen to Present at IFPRI Seminar Series (3/6/25)

On March 6th at 8:00am PT, CSDE Affiliate Isabelle Cohen (Evans School) will present at a session of the International Food Policy Research Institute (IFPRI)’s Applied Microeconomics & Development Seminar Series. The presentation will describe a project entitled “Pathways to Choice: A Bundled Intervention against Child Marriage.”

The presentation will describe a randomized evaluation of a big push-style intervention which provides mentored girls’ clubs, life skills, and vocational training to empower adolescent girls to delay marriage and pursue education in Northern Nigeria. Two years after the start of the intervention, adolescent girls in treated communities are 65 percentage points less likely to be married, estimates an order of magnitude larger than comparable interventions. An important channel is the program’s effects on educational uptake, which increases by 69 percentage points among the treated. However, the effects on education are themselves insufficient to fully explain the effects on child marriage, suggesting the bundled nature of the program is essential to its success. The authors argue that the whole community focus of the program reduces the likelihood of social backlash, allowing Pathways to produce large effects on entrenched, normative behavior. Learn more here.

Tram and Colleagues Detail Deadly Consequences of PEPFAR Funding Pause

The recent federal Executive Order pausing U.S. foreign assistance will have myriad short and long consequences across the world. In a recent commentary shared in the Journal of the International AIDS Society (JIAS), CSDE Affiliate Khai Hoan Tram (UW Medical Center) and colleagues detail the consequences of the “stop order” directive sent to the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR). In their estimation, the proposed 90-day policy review would cost over 100,000 deaths in one year. Read their assessment here.

Korinek and Co-Authors Examine Relationships Between Violence, Networks, and Migration in Thailand

Thailand’s southernmost provinces have faced persistent insurgency-related violence and economic hardship, driving significant outmigration. In a recent study, CSDE External Affiliate Kim Korinek (University of Utah) and co-authors use survey data from 2014 and 2016 to examine how insurgency violence and established networks influence outmigration from these provinces. Findings indicate that individuals were more likely to migrate if they lived in households and villages with established migration networks. Additionally, proximity to frequent insurgency violence significantly increased the likelihood of first-time migration. Read the study here.

Penn State Population Research Institute Invites External Fellow Applicants (3/5/25)

The Population Research Institute (PRI) recently announced a call for applications to the 2025-2027 External Fellows Program. The PRI will welcome a second cohort of the External Fellows grant writing program to PRI’s University Park campus in May 2025.
External Fellows will receive support from PRI to prepare a grant for submission to the National Institute of Health’s Eunice Kennedy Shriver National Institute of Child Health and Human Development. The External Fellows will come to Penn State’s campus for four days of intensive grant-writing training, networking, and mentorship at the start of the first year of the program, May 13-16, 2025. External Fellows will become external affiliates of PRI for two years (with possibility of continuing affiliation), will join the PRI grant writing group, and will be welcome to participate in all of PRI’s activities, including our Brown Bag series, our grant writing program events, and our working groups, such as the Migration group, the Population Health group, the Gender and Family Demography group, or the Climate Change and Health group. The External Fellows program is a two-year program open to Early Stage Investigator (ESI) population scientists.
For more information, please follow the below link and please reach out to Sarah Damaske, Jennifer Van Hook, or Brian Thiede with any questions about the program.