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NIH Sexual & Gender Minority Research Office
The office coordinating NIH research on sexual and gender minority health, with its strategic plan and funding portfolio. Captured 12 January 2025; the URL is now 404.
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- 2025
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- United States
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- English
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- Public domain. A work of the United States Government is not subject to copyright under 17 U.S.C. § 105, so this is held in full with no exception claimed and none needed. Published by National Institutes of Health at https://dpcpsi.nih.gov/sgmro, which returned HTTP 404 when last checked on 2026-09-22.
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NIH SEXUAL & GENDER MINORITY RESEARCH OFFICE National Institutes of Health
Captured from the Internet Archive on 2026-09-22. This file holds 59 pages from dpcpsi.nih.gov/sgmro, the most substantial the Archive has beneath that address. It is a capture of what was published there, not a complete mirror: pages the Archive never visited are not here, and neither are images, datasets or downloads. Each page is headed with its title, its address and its capture date.
Featured Investigator: Brian Mustanski, PhD | DPCPSI dpcpsi.nih.gov/sgmro/featured-investigator-brian-mustanski-phd-0 — captured 2023-12-05
FEATURED INVESTIGATOR: BRIAN MUSTANSKI, PHD
July 2020: Brian Mustanski, PhD Director, Northwestern Institute for Sexual and Gender Minority Health and Wellbeing Brian Mustanski, Ph.D. is the founding Director of the Northwestern Institute for Sexual and Gender Minority Health and Wellbeing, which has grown to be the largest LGBTQ health research institute in the US. He is a tenured Professor of Medical Social Sciences and Co-Director of the NIH Third Coast Center for AIDS Research (CFAR). His research focuses on the health and development of LGBTQ youth and the application of new media and technology to sexual health promotion and HIV prevention. He has been a Principal Investigator of nearly $60 million in federal (NIDA, NIMH, NIMHD, NIAID, NCI) and foundation grants and has published over 265 journal articles. He is a frequent advisor to federal agencies and other organizations on LGBTQ health and HIV prevention, including serving as an appointed member of the National Advisory Council on Minority Health and Health Disparities. Some recognitions for his work include being named a William T Grant Scholar and NBC News selecting him in 2017 from 1,600 nominees to their inaugural list of 30 changemakers and innovators making a positive difference in the LGBTQ community. Dr. Mustanski was the inaugural speaker for the SGMRO Scientific Webinar Series. To see his talk on "Creating Health Equity for Young SGM People," click here !
Q: What are your current research interests?
A: The majority of my research focuses on the health and development of sexual and gender minority youth and the application of new media and technology to sexual health promotion and HIV prevention with young men who have sex with men (MSM). My current projects span the translational spectrum and include longitudinal cohort studies focused on developmental trajectories and risk/protective mechanisms, the development and testing of HIV interventions, and implementation science. In the epidemiological area, I lead the NIDA-funded RADAR cohort study of 1,200+ young MSM and transgender women, some of whom have been followed longitudinally for over 13 years and will be studied for another five years thanks to a recent renewal of project funding. RADAR focuses on multilevel influences on HIV and substance use and integrates biological, psychological, network, relationship, geospatial, and developmental science. This cohort study has directly informed intervention development. I have been the PI of a series of projects testing the Keep It Up! online intervention (R34MH079714; R01DA035145; R01MH118113), which was designated by the CDC as a “Best Evidence” HIV prevention intervention in their compendium of effective programs. We are now studying strategies to implement this effective program in 44 US counties. I am also currently serving as the PI of a NIMHD U01 hybrid effectiveness-implementation trial of an eHealth stepped care HIV prevention package for adolescent MSM (U01MD011281).
In addition to the project I lead, I am also really fortunate to get to collaborate with a great group of researchers within ISGMH and beyond. I collaborate with Dr. Michael Newcomb on his NIDA- and NIAAA-funded trials of the 2GETHER couples-based relationship program for young MSM couples, with Nanette Benbow on an NIAID-funded Implementation Science Coordinating Center for the NIH Ending the Epidemic program through the Centers for AIDS Research, with Dr. Sarah Whitton on the NICHD-funded FAB 400 cohort study of intimate partner violence among young LGBTQ people assigned female at birth, with Dr. Mary Gerend on a text messaging program to increase HPV vaccinations among young MSM , and with Dr. Kathryn Macapagal on a number of projects studying SGM teen app use . I also get to mentor some amazing early-career scientists studying the health of bisexual teens, including K awardees Drs. Brian Feinstein and Christina Dyar.
Q: Tell us about your career path – how did you end up where you are now?
A: I am one of those professors who knew from a young age that they wanted to be a scientist. When I was in high school, I studied plant genetics at a University of Minnesota summer program. I liked the laboratory research, but I found plants less engaging than people. I have always been interested in the interplay of biological and psychological factors in health. When I entered the Clinical Psychology program at Indiana University, I worked on a project studying gene-environment interplay in substance use problems during the development from adolescence into adulthood. At the same time, I also was training in the treatment and prevention of sexual health problems at the Kinsey Institute. Across these two departments, I received great training in multilevel and developmental perspectives on behavioral and sexual health, which I have continued to draw from in my ongoing work. I also have always been an early adopter of technology and enjoy exploring new technological tools. So as the internet emerged as a growing force in social connection, I was well poised to first study how people used the internet in regards to their sexual health, and then later to use it as a tool for education and intervention. I matched for my psychology internship at the University of Illinois at Chicago Institute for Juvenile Research, where I learned a lot about community-engaged research, again lessons that I continue to draw from today. In 2011, I was recruited to a new department at Northwestern University’s Feinberg School of Medicine focused on the applications of social science methods to studying health. As my lab grew with new faculty and research projects spanning multiple SGM populations and health domains, I began a discussion with the university about the potential for an institute that could amplify and expand the community-engaged SGM health research we were doing by supporting excellent researchers who hadn’t yet applied their work to the SGM population. The model has worked incredibly well. Over the past five years, the Institute for Sexual and Gender Minority Health and Wellbeing has grown to 13 core faculty, 35 affiliate faculty, and nearly 70 full-time staff. I am incredibly proud of the diversity of our staff along so many dimensions, including the many health domains we study, and the diverse disciplines and methods being engaged.
Q: What organizational challenges have you faced?
A: Early in my career, reports were coming out from the CDC about very high prevalence of HIV among adolescent and young adult MSM. Because young MSM represented the majority of infections among young people, I assumed they would be the major focus of youth-oriented HIV research. When I started working on a study in this area and attended a conference focused on HIV among young people, I was surprised to see I was one of the only presenters focused on HIV among young MSM. Some conference attendees disputed the CDC data on the large number of cases of HIV among young MSM and said that young gay/bisexual men were not the “face of the youth epidemic.” There was a sense that you couldn’t conduct research with teen MSM because you couldn’t work with parents and IRBs wouldn’t approve waivers of parental permission. And while the CDC compendium of evidence-based HIV prevention programs for other groups grew and grew, there were none for teen MSM. And the epidemic raged on. As a gay man trained in adolescent health research and sexual health, I felt a moral obligation to make this population the focus of my work and every day that commitment guides how I spend my time and energy.
I will admit it has been a challenge to do this work. At my previous institution, my first grant was funded for two years, and I spent 10 months getting IRB approval. All along the way, it was clear the interest was in reducing institutional liability rather than supporting science that could advance the health and wellbeing of a group so heavily impacted by the HIV epidemic. Over the years, I have answered every imaginable question from IRBs and heard how my colleagues have been outright blocked from studying SGM adolescents. As a scientist, I decided to turn to the tool of science to help address these challenges. I began studying the attitudes and perspectives of teens, parents, and IRBs on SGM teen participation in HIV research. My first article on this issue includes my favorite sentence I ever wrote in a journal article : “Lesbian, gay, bisexual, and transgender people do not emerge fully formed at age 18 like the Roman goddess Venus from the sea and it is not scientifically sound to begin all studies of LGBT populations at age 18.” Later I wrote a grant with my colleague Celia Fisher to study the ethical and regulatory issues in involving SGM teens in health research, which was funded by NIMHD . Recently the American Psychological Association issued a resolution supporting mature minors’ right to participate in research without parental permission that drew extensively from the work we had done. Based on these experiences, I like to tell my mentees, “turn your challenges into strengths…or even better turn them into grants.”
Q: What advice do you have for trainees and researchers who want to work in this area or are interested in applying for NIH funding?
A: I often tell my mentees that grant writing is a defensive sport. It is about having a good idea and then justifying every decision and possible concern with sufficient evidence so that reviewers see how you made each decision. I always have my grants reviewed by colleagues outside my team before I submit them and ask those colleagues to be brutally honest with me about what concerns they have. It is better to hear those concerns from a colleague before submission so you can address those concerns before your grant application is in front of a reviewer. I also would say you get zero percent of the grants you don’t submit, so it is worth taking measured risks with innovative ideas you have spent time workshopping and refining. Most grants, need to be resubmitted—sometimes several times—before they are funded. So prepare yourself to work through criticism and rejection. It is worth it when you get to address unanswered questions that can help advance the health of our community.
Q: Do you have any specific advice for working with and involving SGM populations in research? A: I think it is important to recognize that there are different kinds of expertise you need to do strong minority health research. There is expertise in scientific theories and methods, and there is lived experience. I think the best minority health research benefits from and respects the value of both kinds of knowledge. For me that means my research teams need both scientific collaborators and community members. I strongly believe in community-engaged research—recognizing that community engagement is a spectrum and you can calibrate the right type of partnership for your particular project.
Q: Who inspires you? A: I’m inspired by the brave researchers who blazed a path to a career in SGM health research, which was not always a viable career option. Those researchers include people like Magnus Hirshfeld, who was an outspoken advocate for SGM rights; Evelyn Hooker, whose NIMH-funded research in the 1950s laid the foundation for the removal of homosexuality from the DSM; and Alfred Kinsey, whose studies of sexual behavior helped the world recognize the extent of sexual diversity. There are many others who broke down barriers to studying LGBTQ adolescents whom I have tremendous respect for (e.g. Ritch Savin-Williams, the CDC investigator who led the Young Men’s Survey Study, Emery Hetrick and Damien Martin, Anthony D’Augelli, Mary Jane Rotheram). Without their contributions, I wouldn’t be able to do this work myself.
Q: Any final words of wisdom?
A: When you belong to a stigmatized minority community, it can also be hard to study it. I continue to receive hateful messages and my staff is regularly exposed to vile statements posted on our study advertisements. Even if you have a thick skin, this kind of hate can get to you and bring up memories of earlier life adversities. It’s important to think about self-care and communal coping when doing this work. On the flip side, it is incredibly fulfilling to do work that advances the health and wellbeing of your own community and supports the career development of the next generation of scholars that will continue to move us closer to health equity. Every note of thanks or praise we get from a young person participating in one of our programs outshines a hundred nasty messages.
Featured Investigator: Kodiak Soled, MPhil, MSN, RN | DPCPSI dpcpsi.nih.gov/sgmro/featured-investigator-kodiak-soled-mphil-msn-rn-0 — captured 2023-12-05
FEATURED INVESTIGATOR: KODIAK SOLED, MPHIL, MSN, RN
February 2022: Kodiak Soled, MPhil, MSN, RN
PhD Candidate Columbia University School of Nursing
Vice President Lesbian Health Fund
Kodiak Soled is a Ph.D. Candidate at the Columbia University School of Nursing and a National Institutes of Health Ruth Kirschstein Predoctoral Research Fellow. Kodiak’s community-informed research explores multidimensional social support among sexual and gender minority (SGM) childbearing parents throughout the perinatal period. She is particularly interested in the unique ways SGM childbearing individuals are resilient during an intensified period of hetero-and cis-normativity and its impact on perinatal and infant outcomes. She hopes to generate foundational knowledge through this study to develop and test future culturally competent, community-based social support interventions that promote perinatal health and well-being among SGM families.
Q: What are your current research interests? A: Before becoming a researcher, I was passionate about the intersection of reproductive and LGBTQ+ health justice and translated this passion into a program of research focused on reducing structural and interpersonal stigma, as well as promoting wellbeing and resilience among SGM individuals across the perinatal period. I’m grateful to have received funding as a predoctoral fellow by the National Institute of Nursing Research ( F31NR019203) and the Association of Women's Health, Obstetric and Neonatal Nurse's Every Women and Every Baby Award & Hill-Rom Celeste Phillips Family-Centered Maternity Care Award. These grants allowed me to conduct a community-placed, longitudinal study, Queer & Trans PREG , which explores multidimensional social support among LGBTQ+ childbearing parents across the United States. This study included 64 interviews ( n = 24), longitudinal mental health assessments, and photovoice methods — which I found to be a powerful way to advance scientific knowledge on this topic while mutually benefiting the community. I'm excited about the forthcoming community dissemination from this work that weaves personal stories and photography into narratives of struggle and joy during this unique time in the lifespan. I intend to continue using innovative, community-based methods that center communities' needs to create knowledge with immediate and long-term impact. I hope to continue this line of inquiry to understand the unique ways minority stressors emerge during this time of intensified heterocisnormativity, dismantle structural barriers that prevent access to family formation, and identify ways we can intervene to improve health outcomes and wellbeing among SGM childbearing individuals and their families.
Q: Tell us about your career path – how did you end up where you are now? A: My path to becoming a researcher was influenced by the same thing I find among many SGM researchers—a deep desire and steadfast commitment to social justice. My interest in health justice began during my undergraduate degree at Pitzer College. My worldview shifted after being introduced to critical and queer theorists like bell hooks and Judith Butler. This exposure forced me to examine my privilege and develop a critical consciousness of how unequal social relations create tangible health inequalities. I also learned the value and importance of community-engaged work by Dr. Tessa Hicks, who revolutionized my paradigm of who creates and owns knowledge and truth. For the next several years, I focused on food justice and health. I attended additional schooling to become a Natural Chef and Clinical Herbalist, combining these skills to support the health and wellbeing of populations going through vulnerable life experiences, such as perinatal parents. At some point, I felt limited by my scope of practice and decided to pursue a degree as a nurse, attracted by the holistic approach to health I experienced within the nursing care paradigm. During my MSN at Johns Hopkins University, I had the opportunity to conduct research under the mentorship of Dr. Tonia Poteat, who inspired me through the population-level impact of her work to pursue a research career over clinical practice. Across those years, I was always engaged in community-based volunteer work—founding an SGM perinatal support group, serving on boards advancing community engagement and SGM health, conducting training on SGM competence, et cetera. Becoming a research scientist was the first time I could weave together all the things I cared deeply about — community-engaged work, SGM communities, emotional wellbeing, and reproductive health justice — into the story that has become my career. The diverse skillsets I gained at each chapter of my story — from critiquing systemic issues to running a business to facilitating workshops to assisting in delivering babies — have been integral and influenced my F31 study in more ways than I could have ever anticipated, and I know they will continue to support my future work. I think it's common to feel like you're meandering through your 20's, but looking back I can see a clear through-line and how it's all accumulated to influence the researcher I am today. In many ways, I’m still at the beginning of my career and eager for what the next chapter has in store.
Q: What organizational challenges have you faced? A: I'm incredibly fortunate to be studying SGM populations in 2022. The accomplishments I've achieved thus far are primarily due to SGM scholars' pioneering work that paved the way for me to secure funding to study SGM communities. Part of that privilege is being part of the Center for Sexual and Gender Minority Health Research at Columbia University School of Nursing and the Program for the Study of LGBTQ Health at Columbia University Department of Psychiatry and School of Nursing. Columbia Nursing’s explicit support for SGM research was the primary reason I pursued my Ph.D. at Columbia University and I can't emphasize how fundamental it has been to my training to be part of a community of SGM scholars. It reminds me that my work is valid, valuable, and needed, as well as helping me understand and rigorously critique my scholarship. The mentorship and support have been invaluable as a trainee. That being said, there is still a long way to go to reduce institutional challenges in conducting SGM research. I’ve encountered obstacles such as being discouraged to pursue community-based research, as well as primary, qualitative data collection. I believe these methods are critical for conducting research within SGM communities and exploring new areas of research where there has been scant evidence (e.g., perinatal health outcomes among SGM individuals). I'm lucky to have exceptional mentors, Drs. Walter Bockting and Maureen George, who have supported me to pursue the research questions I care about, and subsequently the appropriate methods to answer those questions. I’m also very fortunate that NINR saw value in the methods I chose and my area of interest, as well as confidence in my ability to conduct such an intensive study as a predoctoral fellow.
Q: What advice do you have for trainees and researchers who want to work in this area or are interested in applying for NIH funding? A: The best advice I received when I was applying for Ph.D. was to choose an advisor, not a school. You cannot underestimate how important this person will be during your time as a trainee, and the power they hold to support or block your pursuit of a career as an SGM researcher. Secondarily, I'd say build your network. The SGM research community is extremely welcoming, supportive, and collaborative. The more of us doing this work only brings more attention to how important and necessary it is to fund this work or as that aphorism goes, “A rising tide lifts all boats.” It's also a relatively intimate community of researchers so you never know how that connection may lead to future connections and opportunities. How to build your network? The SGM Health Research Regional Workshops , as well as SGM-specific conferences like GLMA's Annual Conference on LGBTQ Health, are fantastic ways to meet SGM researchers and build your network. One thing that worked for me was to do a little research in advance to find attendees or presenters who shared similar interests with me. I reached out to them ahead of time and asked if they had time for a 15-minute coffee meeting sometime during the conference. I have yet to be turned down by doing these direct requests. In terms of applying for NIH funding, I was privileged to be trained in an institution with an abundance of resources and support for grant writing. If your institution doesn’t offer these resources, look into whether another department or college at your institution offers training or courses in grant writing. Once you have a good draft of your application, get as many people as possible to read over your grant. I think the one area academics tend to ignore is the art of storytelling. This isn't something you will likely be taught, but especially as a trainee, your background and training potential count just as much as the research proposal. Humans are drawn to stories and frankly, reviewers are busy and likely reading your grant at 11 pm after a long day so you need a compelling narrative to sell your reviewer on why YOU deserve to be funded and keep your reviewer engaged with your application. Lastly, Karen Parker is the godparent of SGM researchers at the NIH. She is an incredible resource for navigating the various institutes and I highly encourage you to leverage her support to ensure your application is going to the right institute for their current interests and priorities.
Q: Do you have any specific advice for working with and involving SGM populations in research? A: I deeply believe in and advocate for conducting community-based participatory research for several reasons — one of the key reasons being the authentic engagement and collaboration that occurs among researchers and community members engaging in this type of work. This type of research not only supports recruitment efforts and increases the trustworthiness and rigor of our research, but it also encourages the ability of our work to move beyond manuscripts as the outcome and think innovatively about how we can also directly improve the lives of those whom we seek to support.
Q: Who inspires you? A: Community activists and leaders, particularly those in the reproductive and LGBTQ+ justice space, who are often the ones educating others and advocating on behalf of our communities’ needs, holding space when we need it, and generally resourcing our communities that too often fall through the cracks of structural support and resources. I continue to learn from and be deeply inspired by queer and trans doulas and midwives such as Stephanie Tillman, Erika Davis, Moss Froom, King Yaa, Eri Guajardo Johnson, Jenna Brown, Ray Rachlin, and many others. Also, academics who continually leverage their power to question how things have always been done in ways that reproduce inequalities, authentically partner with and are led by the communities they research, lead and mentor with kindness and empathy even when holding others accountable, and generally live their values through their work. SGM researchers and/or nurse scientists like Drs. Molly Altman, Monica McLemore, Juno Obedin-Maliver, Rae Walker, Jess Dillard Wright, and many more.
Q: Any final words of wisdom? A: Many will say your Ph.D. will be some of the hardest years of your life. You may find that to be more or less true for your experience. My advice for those entering or currently in training comes from a wise mentor, Dr. Cindy Veldhuis: buoy yourself with people and things that make you feel like you. Keep investing in your relationships, doing the activities that bring your joy, and cultivating the parts of your identity outside of being a trainee. This becomes essential to maintaining your identity as a person and to resist reducing yourself to a single grade, abstract submission, publication decision, or grant application. I think this is probably true for the rest of your career, but you don't have that pile of "wins" to buffer the rejections as an early trainee. Joy is itself an act of resilience and essential to buffer the challenges of building a career as an SGM researcher.
Featured Investigator: Jody Herman | DPCPSI dpcpsi.nih.gov/sgmro/featured-investigator-jody-herman-0 — captured 2023-12-05
FEATURED INVESTIGATOR: JODY HERMAN
June 2021: Jody L. Herman, PhD Scholar of Public Policy, Associate Researcher The Williams Institute, UCLA School of Law Jody L. Herman, Ph.D. is the Reid Rasmussen Fellow and a Scholar of Public Policy at the Williams Institute. Her research focuses on gender identity in survey research and the prevalence and impact of discrimination based on gender identity or expression, including minority stress, health, and suicidality among transgender people. She is a Co-Investigator on the U.S. Transgender Population Health Survey (TransPop), a nationally representative survey of transgender adults. She served as Co-Principal Investigator for the 2015 U.S. Transgender Survey, the largest survey of transgender adults conducted in the United States to date. Her published research is routinely cited, including by major news sources, such as The New York Times, Washington Post, CNN, and NPR. She holds a Ph.D. in Public Policy and Public Administration from The George Washington University, where she also earned her M.A. in Public Policy.
Q: What are your current research interests? A: My research interests are focused on understanding the characteristics, health, and well-being of transgender people. I approach my work with a minority stress lens, but since my background is in public policy, I am particularly interested in structural stigma and the relationship between state and federal policies and trans people’s health and well-being. The lack of data about transgender people in the U.S. has been a barrier to our understanding of the experiences and needs of the trans population. So, one major interest of mine is to increase gender identity data collection, particularly through large, population-based surveys. We’ve made advances in that arena, especially since the 2011 Institute of Medicine’s LGBT health report recommended gender identity data collection in federal surveys. Yet, there’s much more work to do! In 2007, the LGBTQ Task Force and the National Center for Transgender Equality took matters into their own hands to create the data they needed to advocate on behalf of trans communities. I was honored to be a part of that effort, serving as a data analyst on the National Transgender Discrimination Survey (NTDS)(’08-’09) and later as Co-PI on the 2015 U.S. Transgender Survey (USTS). The 2015 USTS generated data that has been incredibly useful in studying trans health, especially distal minority stressors and their relationship to mental health. I am now serving as co-PI on the next iteration of the USTS, which will launch in early 2022. Another study I am currently working on as a co-investigator will continue pushing gender identity data collection forward. It’s an NIMH-funded study to improve sexual orientation and gender identity data collection in mortality data, particularly regarding violent deaths (1R21MH125360-01; PI John Blosnich). Trans people have an elevated risk of suicide attempts and we hear alarming stories about murders of trans people, particularly trans women of color. Without systematic data collection about suicide deaths and homicides of trans people, we are limited in our understanding to intervene and prevent these deaths. I am hopeful that this study will make a difference in creating the data we need.
Q: Tell us about your career path – how did you end up where you are now? A: My career path had some twists and turns early on, and may seem less “traditional” for health research. I initially thought I wanted to be a high school history teacher. I got as far as my student teaching placement and quickly realized that was not the path for me. I wanted to do something that could make a positive impact on a different scale and was drawn to public policy. I received my MA in Public Policy from The George Washington University in 2004. While completing that degree, I volunteered with a local activist organization, the DC Trans Coalition, on public policy initiatives. I also volunteered with the organization HIPS, doing HIV harm reduction outreach with street-based sex workers in the HIPS outreach van. My volunteer work is really what propelled me to pursue my Ph.D. in Public Policy, in the field of Gender & Social Policy. My dissertation was about the prevalence and impact of problems trans people reported when using gendered public spaces, like bathrooms and locker rooms, and public policy responses. While finishing up my Ph.D., I went to a weekend-long training for grad students at the Williams Institute at the UCLA School of Law, a research center focused on sexual orientation and gender identity law and public policy. I met Drs. Lee Badgett and Gary Gates and learned about their approaches to policy analysis. I applied for a two-year post-doc fellowship with the Institute and got it! I started there in fall 2010, bringing with me my dataset from the NTDS. I worked on adapting methods to study economic impacts and population estimation to gender identity discrimination and the trans population. I was then offered a full-time position and I’ve been with the Institute since. A big turning point for me in my approach to my work was when Dr. Ilan Meyer joined the Institute in 2011. I learned a great deal from him about minority stress and it was like a light bulb went off over my head. Public Policy is interdisciplinary and we learn a variety of methods, but everyone has their own perspectives that are informed by Economics, Political Science, or other disciplines that they have an affinity with. My perspective was informed more by Women’s and Gender Studies, understanding gender-based systems of oppression, but being able to articulate the cause of disparities in health and well-being through the minority stress model was an aspect of my perspective that was missing. My work, even when not directly studying mental or physical health, elucidated distal minority stressors that cause health disparities. Dr. Meyer encouraged me to apply for the NIH Loan Repayment Program (LRP) in Health Disparities Research and served as my mentor. I attended his NIH workshop, which guided participants through the various steps of applying for funding. His guidance and mentorship have been invaluable. It was tremendously exciting to then work as a Co-Investigator on Dr. Meyer’s NICHD-funded U.S. Transgender Population Health Survey (“TransPop”; R01HD090468; www.transpop.org), along with Drs. Sari Reisner and Walter Bockting. This groundbreaking study created the first nationally representative sample of trans people in the US. I’ve since been working as a Co-I or as an expert on NIH-funded studies on SOGI mortality data (1R21MH125360-01; PI John Blosnich), measuring stress for gender minority youth (1R21MD015945-01; PI Jeremy Goldbach), and hopefully will be working soon on a study of nonbinary youth.
Q: What organizational challenges have you faced? A: One barrier I’ve come up against in publishing and in funding applications, especially early on, was having reviewers that lacked understanding of gender identity and transgender people. For instance, I remember one grant application I was a part of early on (to a federal agency outside of NIH) about violence against trans people and the reviews came back saying we had erroneously stated there were no studies of violence against trans people. As evidence, they listed a handful of studies about violence against cisgender gay men. They rejected the application. Additionally, I think it can be difficult sometimes when certain funding streams have strict rules about reviewers’ conflicts of interest. It’s getting bigger now, but the realm of trans health researchers and organizations has been relatively small and many of us know each other. I’ve been rejected from serving as a reviewer in competitive funding processes on trans health because I personally know one or more of the investigators. That’s understandable to me, but in a review process on trans health initiatives, I wonder who is left to review the pool of applications if no one can know each other. The field continues to grow, though, so perhaps this will be less of a concern moving forward. One last thing I will mention is that it was a pivotal moment in 2016 when sexual and gender minorities were officially designated a health disparities population at NIH. Not only was this a boon to trans health research generally, but also for me personally. I had been applying for the LRP before the designation and it was difficult to make the case to reviewers that my work on trans health should be considered eligible for the health disparities research program. After SGM populations were included, I finally was able to apply for the LRP with my research deemed eligible because it was SGM research. I did eventually receive an award. The establishment of the SGM Research Office (SGMRO) was also a pivotal moment and it’s been great to be involved with some of their initiatives.
Q: What advice do you have for trainees and researchers who want to work in this area or are interested in applying for NIH funding? A: Pursue research you are passionate about. Even coming from fields of study that may be less “traditional” for NIH-funded researchers, it’s worthwhile to contact program officials to talk about your research and where it might fit within NIH. Find a mentor who has a successful track record of NIH funding and learn from their experience. The Loan Repayment Program is an excellent program that can support you in pursuing your research goals. Definitely look into that! Dr. Meyer and I worked with Karen Parker and the fantastic folks at the SGMRO to host an NIH SGM Research regional conference at UCLA, and it was a great way to learn about NIH, the various priorities of the institutes, and how to make the most of the resources offered to help make your funding application a success. Seek out these types of workshops and opportunities to meet NIH officials and the excellent folks at the SGMRO. The NIH application process can be daunting. It’s great to have institutional admin support to go through the process. Find out if your institution can be of assistance. Finally, don’t give up. Listen to feedback and try, try again.
Q: Do you have any specific advice for working with and involving SGM populations in research? A: If you aren’t coming from a place of knowledge and connection, either personally or otherwise, with SGM populations, please first get to know the communities you want to research before you jump in. Involve the community in your research. Have community advisory boards. Your research will be better for it and you can make sure it will be of benefit to those you are working with, which for me is imperative. There are those in SGM communities who distrust researchers, and that distrust is based on negative experiences with researchers and also how research has been wielded against SGM people. Understanding that and entering the field with a bit of humility helps.
Q: Who inspires you? A: The list is long, and certainly includes Ilan Meyer, my colleagues at the Williams Institute, and my colleagues outside of the Institute who I have been so fortunate to work with, like Sari Reisner, Sandy James, Walter Bockting, Mara Keisling, Tonia Poteat, and so many others. It has been so personally and professionally rewarding to be in a community of researchers who are doing amazing work, support one another, and have the interests of the community in mind. Those at my graduate institution, like Cynthia Harrison, who supported and guided my work, even though some didn’t really understand why I was so obsessed with bathrooms and writing all my course papers on the subject. I think of those who were community leaders in my early grad school days in DC, who inspired my entire career trajectory. People like Jessica Xavier, Earline Budd, Ruby Corado, the activists of the DC Trans Coalition, and the staff and peer educators at HIPS. They inspired my journey. Working on hard topics, like suicide, can sometimes feel heavy with the gravity of it all. The strength and resilience I witnessed from these leaders, who I saw bring the community together in times of fear and tragedy, has been instructive to me. The love of community that was the heart of their work is what I try to keep centered as the heart of my work.
Q: Any final words of wisdom? A: Do work you are passionate about. Having a passion for your work will help you get over hurdles, push through barriers, and find intangible rewards in realizing your goals. For those like me who come to health research from less traditional backgrounds, it helped me when I realized health was a broader concept than I had previously thought. That allowed me to connect my work and use the approaches and methods I had learned to study health in ways I hadn’t considered. For those who may feel like outsiders to the type of research NIH supports, think again about how your research may be connected to health. You may find there’s a connection there you may have overlooked.
Featured Investigator: Amy Tishelman, PhD | DPCPSI dpcpsi.nih.gov/sgmro/featured-investigator-amy-tishelman-phd-0 — captured 2023-12-05
FEATURED INVESTIGATOR: AMY TISHELMAN, PHD
June 2022: Amy Tishelman, PhD
Research Associate Professor Boston College Department of Psychology and Neuroscience
Dr. Amy Tishelman is a clinical and research psychologist, and a Research Associate Professor at Boston College in the Department of Psychology and Neuroscience. She previously worked at Boston Children's Hospital (BCH) for close to three decades where she last held the position as Director of Clinical Research in the Behavioral Health, Endocrinology, and Urology (BE-U) Program and Gender Multispecialty Service (GeMS) at Boston Children’s Hospital (BCH). These programs provide clinical care to youth, young adults, and families related to differences of sex development (DSD), intersex conditions, and gender. She was also a Senior Attending Psychologist at BCH and an Assistant Professor at Harvard Medical School. Dr. Tishelman previously worked extensively in the areas of child maltreatment and trauma. Dr. Tishelman has been awarded several NIH grants as an MPI or Co-I, investigating well-being and/or gender development in children and adolescents, and youth/young adults with DSD. She also co-authored a clinical report for the American Academy of Pediatrics (AAP), published in Pediatrics, on fertility and sexual function counseling for at-risk pediatric patients. Dr. Tishelman was selected by the World Association of Transgender Health (WPATH) to be the international leader in developing new global standards of care for prepubescent children, and by the American Psychological Association to co-chair a national task force on DSD. She is on several journal editorial boards and speaks and publishes frequently in her areas of expertise.
Q: What are your current research interests? A: In a general sense, promoting the well-being of children, adolescents, and adults with vulnerabilities to trauma, stigma, marginalization, and even negation; more specifically, and currently, research designed to support the well-being and beneficial clinical care practices for youth and young adults who identify as Intersex and/or have been diagnosed with a sex trait variation (also referred to as a difference of sex development [DSD]) and their families; research designed to support the well-being of trans/gender diverse children, adolescents, young adults, and their families. I am honored to be a clinical researcher in these areas—and profoundly grateful to NIH for providing funding to me and others for SGM clinical research that is so deeply necessary. Debates and political discourses are raging and can have potentially profound detrimental effects on SGM communities. In my opinion, well-designed and rigorous research efforts are key for helping to resolve controversies in these fields based on sound science rather than assumptions and opinion. I must express particular gratitude to the SGM Office. Over the years, I’ve called from time to time to discuss research priorities and approaches, and the Office staff has been consistently available and responsive. I am thrilled—truly—by the NIH support for a relatively new line of research funded through the SGM Office and NIMHD, to develop a self-advocacy tool designed to benefit clinical care for youth across the broad spectrum of sex trait variations (also known as Intersex or DSD). This research is informed by past mixed-methods NIH-funded research on care experiences and predictors of well-being in youth and young adults in the Intersex and sex trait variation communities (with myself and Canice Crerand as MPIs) and grounded in community collaboration. It would be simply impossible without the contributions of all involved, including my investigator colleagues, Canice Crerand and John Strang, and many other community stakeholders who have contributed their time and wisdom to ensure that the new measure (The VISTA: The Variations in Sex Trait Advocacy Tool) is a true reflection of community needs. The VISTA is designed to be disseminated as a tool to transform clinical care in a clinical practice area that has been permeated by insensitive and even harmful clinical practices.
Q: Tell us about your career path – how did you end up where you are now? A: I’ve had a rich and varied career path driven by a dynamic interaction between my research and clinical endeavors. When I began graduate school in clinical psychology, I was unsure of what I wanted from my career, and thus was fortunate in the sense that I sought out and received training in several diverse areas, including pediatric psychology and neuropsychology, interpersonal violence and trauma, and human development and psychopathology. When I reflect on my career, I would say that I have developed two primary areas of expertise: sex and gender diversity as well as interpersonal violence and trauma. I’ve also been trained as a pediatric psychologist, and have worked in many pediatric subspecialties, including childhood obesity, GI pain, developmental medicine, and urology. This wide-ranging background has profoundly informed my research questions, my clinical work, and my broader professional efforts. My first professional employment was as a tenure track clinical psychology professor at Binghamton University, and although I walked away from that position to go to BCH, I learned an enormous amount about teaching, conducting independent research, research supervision, and leadership. I found my true passion for research through clinical work and the knowledge gaps I encountered while working directly with patients, leading to the most meaningful projects of my life—my efforts to support the science of SGM care. I owe my current passions to the strength of the young people and their families who have entrusted me with their care, often at times of great vulnerability. I am deeply thankful that I can fulfill my intellectual interests in ways that matter to me emotionally, and hopefully have meaning in the wider world.
Q: What organizational challenges have you faced? A: No comment. There have been many, and I prefer to dwell on the positives.
Q: What advice do you have for trainees and researchers who want to work in this area or are interested in applying for NIH funding? A: Be true to yourself and the communities you are working to serve. Be authentic and honest. Expect challenges and surprises. Be grateful when your work is appreciated and notice if you are mistreated or if your work is minimized. Monitor to avoid burn-out and take steps to give yourself time and space to create a more balanced existence. Academics can be infused with a toxic culture at times—try to make the systems better if you encounter difficulties. Find friends for your professional journey within or outside your institution, and hopefully, they can be colleagues as well. Make sure you have personal supports when you need them. Try to have fun while you do your work. Make sure your research achievements are not designed for self-promotion, but that your work is driven by its potential positive impact. Don’t expect perfection—forgive others, forgive yourself too and never be dishonest in your scientific work or your interpretation of research. Find mentors but also sponsors if you can (a sponsor is an individual advocating for your success within an institution and is often a leader within that context). And make sure to recruit advice from within and outside NIH so that you don’t fruitlessly submit grants with no hope of funding. On the other hand, if you believe in something deeply, don’t give up too easily.
Q: Do you have any specific advice for working with and involving SGM populations in research? A: Over the years, it has become increasingly apparent that it is critical to work in partnership with, and deeply involve, SGM populations in research. I received a lot of early feedback informing my research directions from my patients, which led me to understand that they themselves are key subject experts. Research approaches that exclude stakeholders may at best be condescending and at worst harmful. Failing to partner with the SGM community risks research which doesn’t hold much meaning, and we don’t have time and resources for wasted efforts. I feel it is not possible at this point for me to function as an effective researcher in the absence of a genuine partnership with those whose lives and well-being ultimately hinge on the outcomes of the work. For instance, the current VISTA project I mentioned above is only possible after years of working closely with the broad intersex/sex trait variation communities; the generous partnership and contributions of stakeholders are directly informing the development of the tool itself.
Q: Who inspires you? A: I would love to make this the longest answer of all. In brief, I am most inspired by individuals who maintain authenticity even in the face of stigma and hardship. This sometimes includes individuals in the SGM communities and others who have been marginalized by their diversities. I am also inspired by those who make their lives meaningful in large and small ways and do so while retaining personal integrity—which to me means striving to do their best while also accepting personal limitations. I am inspired by the intelligence and insights of the Boston College community and especially my students, who have kept me on my toes for the last 30 odd years. I also want to promote recognition of the countless clinicians who change lives quietly and profoundly every day, and by their patients who seek care when it can be hard. Most of all, I am inspired by those who have faith in research—including those individuals who entrust researchers with access to sensitive and confidential information while serving as research participants. It is humbling. The researchers I have collaborated with in trans/gender diverse and sex trait diversity research are some of the bravest and intellectually incisive individuals I have ever known or worked with; the cross-pollination of ideas during these collaborations yields important critical innovations and scientific progress. I have been so grateful to be working alongside the co-chair of the American Psychological Association Intersex/DSD Task Force. Amy Lossie is an inspirational friend and colleague who has educated me tremendously, as have the rest of the task force members. And I have had the good fortune to work with an incredible set of colleagues, many now friends—stakeholders, clinicians, and groundbreaking researchers—to develop the Child Standards of Care Version 8 for WPATH. I am especially grateful for this opportunity to highlight two personal mentors. First, Eli Newberger founded the Child Protection Program at BCH. He hired me at BCH in 1992, and his leadership and vision have shaped me indelibly as a professional and as a person. He demonstrated kindness each day, not for any publicity but because he is a brilliant mensch. Although he retired from BCH long ago, I have been lucky enough to remain close personal friends with him and his wife, Carolyn Newberger, my wonderful former psychology supervisor at BCH, also now a lifelong friend. Another personal hero is Norman Spack. He hired me at BCH as the first Director of Clinical Research in the transgender and Intersex/DSD services, ground-breaking services he co-founded. He understood the immense need for clinical research to support SGM communities. Norm has used his talents as an instrument to change the world for the better, with the arms of his innovations reaching out in countless directions. His work paved the way for inestimable young people worldwide to receive life-changing (and sometimes lifesaving) gender-affirming medical care. He co-founded these pioneering services, not to promote his own career but instead simply to help youth. I’ve been most profoundly inspired by the youth and families I have been entrusted to work with throughout the 30+ years of my career. The older I get, the more moved I am by the wisdom and courage of my patients. The most significant lesson I’ve learned is that as a clinical researcher I am not the most important person. I am acting with and on behalf of others.
Q: Any final words of wisdom? A: I am not sure this is wisdom, but these are my final words. I am grateful to anyone who is working on SGM research. Promoting this research is a vital way to pay witness to the countless contributions and unique experiences and needs of the diverse LGBTQ+ communities. So, persevere folks/folx!
Featured Investigator: Scout, MA, PhD | DPCPSI dpcpsi.nih.gov/sgmro/featured-investigator-scout-ma-phd-0 — captured 2023-12-05
FEATURED INVESTIGATOR: SCOUT, MA, PHD
August 2022: Scout, MA, PhD Executive Director National LGBT Cancer Network
Scout is the Executive Director of the National LGBT Cancer Network and the principal investigator of both the CDC-funded LGBTQ tobacco-related cancer disparity network and Out: The National Cancer Survey. He spends much of his time providing technical assistance for tobacco and cancer focusing agencies expanding their reach and engagement with LGBTQ+ populations. Scout has a long history in health policy analysis and a particular interest in expanding LGBTQ+ surveillance and research. He has faculty appointments at both Brown University and Boston Universities’ Schools of Public Health. He is a member of the NIH Council of Councils, the Co-Chair of the NIH Sexual and Gender Minority Research Office Work Group, on the Advisory Panel for NIH’s All of Us initiative, and a U.S. Pharmacopeial Convention delegate. His work has won him recognition from the U.S. House of Representatives, two state governments, and many city governments. Scout is an openly transgender father of three, a vegetarian, an avid hiker, and runner.
Q: What are your current research interests? A: Experiences of SGM people with cancer and their caregivers; tobacco use among SGM people.
Q: Tell us about your career path – how did you end up where you are now? A: I always presumed I’d get a PhD, but then that started to float away until a health researcher named Judy Bradford took me aside and told me she really thought I should get one, specializing in queer health. With Judy’s pushing I got back into school at 30 and pursued a masters in sociology then enrolled in Columbia’s School of Public Health to get my PhD. Judy was faculty at the school and was trying to start an SGM research nexxus. During that program I came out publicly as trans, which unexpectedly made me even more valuable due to the lack of trans researchers. My thesis was on Social Determinants of Transgender Health and I still remember what a profound experience it was getting people’s life stories. I heard from people who were homeless in Times Square as young teens, who had friends violently murdered, who lived high and much more often, who struggled deeply with addictions, depression, and the persistent violence against them. Every single trans person had their education interrupted, which left me feeling even more amazed I was getting a PhD.
When I graduated I was one of two openly trans PhD level health researchers I knew, which is a lonely place to be. But Judy continued helping me land well, pulling me into one of the biggest SGM health centers in the country to be the head of trans research. But to be honest, while she was a staunch ally, the rest of the environment was at times quite chilly. Nonetheless I continued stepping ahead, doing a large national tobacco study and building my connections as Judy pulled me into more and more national queer health planning efforts. Soon I was the Science Director for the National LGBT Health Coalition and meeting with heads of different HHS OpDivs to get community health priorities moving. A key thing this work taught me was how policy shapes the ability of researchers to be able to conduct good SGM science. For many years, the researchers around me had to use coded words to get NIH studies about queers funded. They endured a brisk change of political winds everytime the President changed. They had to deal with their lives and or research being mocked by right wing trolls, including one time when there was a full scale witchhunt of queer researchers that to be honest, drove many away from the field. Because of this persistent headwind, I leaned into policy more and more, including pushing HHS’s Office of Minority Health to include SGM issues in cultural competency standards, a multi-year push to get SGM acknowledged as a health disparity population by NIH, then another to get an office of SGM health opened at NIH.
Ultimately all those things were achieved, which makes me very proud. But I continue to push on what is now my longest term professional goal, getting enough SGM data for us to write compelling needs statements for our research project. Our communities data gaps have too often left us unable to be as competitive as researchers in other topics, and with highly competitive paylines this is one of the biggest barriers to getting more SGM research. En route to this goal, I’ve continued to speak up about the needs of our research community frequently.
For most of this time, I was funded primarily by CDC to run a tobacco and cancer disparity network but since we don’t get public health interventions without identifying problems via data, then researching what interventions work, I’ve continued to focus on opened that research pipeline wider. I worked with a few amazing students to publish the first analysis of NIH funding, a process that’s now become an annual activity of the SGMRO. I continued to listen to my research colleagues about what was slowing them down and speaking up about it to NIH leadership. While the head of NIH didn’t answer many of my early letters, eventually he started to meet with me and others we would assemble; by the time he retired I had been pulled in to many official advisory committess and we were on first name basis, as I still am with the current Interim Director. I am now ending my term as a member of the Council of Councils and as Co-Chair of the SGMRO Work Group. I am still on the advisory committee for what I admit is probably my favorite study, All of Us . I like to think of All of Us as research 2.0, where underrepresented people make up a majority of the study population and diversity is seen as a strength of the data collected.
Meanwhile on the career side, except for a two year gap I’ve now run the CDC funded tobacco and cancer disparity network for over a dozen years. I love how that work lets me provide technical assistance to states and federal entities looking to do better work on SGM health. For the last few years I’ve now moved into being the Executive Director of the National LGBT Cancer Network. I love the team we’ve assembled to do that work, and I find it interesting to learn about industry (i.e. pharmaceutical) options for getting research funded. My most recent research project is Out: The National Cancer Survey, where we had 2,700 queer cancer survivors tell us about what worked and what went wrong. Now that dataset is available for researchers to use and at least a dozen nationwide are doing different types of secondary analyses. What’s next for me on the research front? Two things: I want to run a similar study of cancer caregivers and we’ve started a new mentorship program, Cancer Leaders Like Us, which I hope can help pave the way to get more queer and minoritized researchers into the field. The other day I gave a career talk to an NIH group of fellows, and as I started one of the participants admitted they were almost crying, simply because they don’t see senior people like me in the field very much. So I’m reminded on a very frequent basis how lucky I am to have come so far, and the responsibility that confers to do my level best to clear the path for other unrecognized and undervalued people to follow.
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