Interdisciplinary, Inclusive, and Innovative: Promoting a Paradigmatic Shift in Cancer Research Among Transgender and Gender Diverse Adolescents and Young Adults

Abstract

Transgender and gender diverse (TGD) adolescents and young adults (AYA) face heightened risks of cancer due to cissexism and transphobia in healthcare, low cancer screening rates, limited knowledge and awareness of cancer risk and screenings, poor healthcare experiences, and exposure to sexually transmitted infections (STIs). Despite this, TGD AYA cancer risk is relatively unexamined in oncology research. To intervene early and mitigate risk, we require holistic understandings of cancer risk among TGD AYA. This research brief engages with an interdisciplinary knowledge base to identify gaps and limitations warranting critical attention by TGD AYA and cancer scholars. The current literature on TGD AYA risks for cancer are explored with specific attention to the social environment and its impact on cancer risk. The brief ends with a call to action for a paradigmatic shift to promote inclusive, innovative, and interdisciplinary cancer research with TGD AYA.

INTRODUCTION

Transgender and gender diverse (TGD) people have disproportionate cancer risks compared with cisgender populations^1–3 and are a growing and medically underserved population of cancer patients in the United States.^1,4,5 TGD adolescents and young adults (AYA) have heightened cancer risk due to cissexism in healthcare, low cancer screening rates, limited awareness of cancer risk and screenings, poor healthcare experiences, and exposure to sexually transmitted infections (STIs).^6–9 Simultaneously, TGD AYA navigate complex developmental tasks related to age and gender, increasing their risk of health concerns and limiting their access to affirming care and screenings.¹⁰ Centering AYA in cancer research allows us to target prevention and intervention efforts during early developmental stages and promote wellness across the life course. To do so, we advocate for a paradigmatic shift to promote interdisciplinary, inclusive, and innovative cancer research with TGD AYA.

TGD CANCER SCREENING

A lack of appropriate and timely screenings among TGD people contributes to a lack of early prevention, which may lead to late stage diagnosis.^4,11 Barriers to preventive screening include misclassification of gender markers, gendered language, and lack of provider knowledge.¹¹ Automated screening recall efforts may exclude patients who have updated their gender in electronic health records and insurance billing codes may preclude coverage eligibility.¹¹ Lack of physician training in how to appropriately engage transgender patients at various phases of medical transition also contribute to inadequate care.⁸ Health care providers often lack knowledge about TGD health needs in general, and oncological needs specifically.^12,13 Specialized providers or oncologists who provide affirming care may be restricted by geography, availability, insurance coverage or nature of the cancer speciality.²

TGD AYA report low cancer screening rates,^6,7,9 limited knowledge and awareness of HPV,¹⁴ low HPV vaccination rates,⁹ and poor reproductive healthcare experiences, as well as increased rates of risky sexual behavior⁸ and risk of exposure to STIs, including HPV,¹⁵ the cause of cervical and anal cancer. Importantly, these risks are not directly related to TGD AYA’s gender identities; rather, they are produced by growing up in a society that stigmatizes and marginalizes TGD identities, while normalizing sexual behavior associated with HPV infection and cancer. A wealth of literature documents relationships between mental health issues and minority stressors and supports within TGD AYA’s families,¹⁶ schools¹⁷ and communities.^18,19 Further, stigma and healthcare discrimination are barriers to cancer screening among TGD AYA.^14,20 Nearly 1/5 of transgender adults reported being refused medical care due to their gender identity and 50% reported having to educate their medical providers on transgender issues.¹⁷ The percentage of TGD AYAs who experience discrimination in health care settings is unknown, as research on this population is scant. More studies on the experiences of TGD AYAs are warranted.

Currently, the United States Preventive Services Task Force²¹ does not recommend specific screenings for TGD AYAs because no evidence-base exists for the TGD AYA population. A lack of recommendations does not imply lack of need for screenings; rather, it indicates the need for more empirical studies to substantiate preventive screening recommendations for this population. Current screening recommendations for the general population serve as a basis for developing TGD AYA specific recommendations. Anal screenings have been developed for anal cytology for heterosexual populations and men who have sex with men. However, a growing body of research on using HPV primary testing for possible anal screening in cisgender men, cisgender women, and TGD individuals informs future directions for anal cancer screenings.^22,23 Cervical cancer screenings start at age 21 and primary HPV tests have been approved by the Food and Drug Administration²⁴ for cancer screening in people with a cervix ages 25–65 years. Because the primary HPV test serves as a screening for STIs and cancer, younger populations seeking STI testing will also be covered for cancer screenings. Developing an evidence base for self-checks is also important for this population. Guidance on effective melanoma self-checks may be preventive for this population. Developing personalized recommendations for screenings and self-checks for TGD AYAs is a necessary step toward ensuring effective and inclusive prevention measures.

CALL TO ACTION

Being TGD and an AYA creates layers of vulnerability and marginalization that impact cancer screening or treatment. TGD AYA are understudied across almost every health domain, evident by the fact that the vast majority of states do not include transgender identity questions on their versions of the Youth Risk Behavior Surveillance (YRBS) Survey.²⁵ The YRBS Survey is a national survey guided by the Centers for Disease Control and Prevention²⁶ that is operationalized at the state level to examine middle and high school students’ risk and resilience factors including: physical and mental health, sexual health, violence, bullying, and academic performance. Additionally, we lack data on how cancer risks are related to the developmental tasks of adolescents, mental health, and social environments among TGD AYA.

Given nuanced and complex cancer risks for TGD AYA, we must critically attend to how we conduct research with this population. We contend that research with marginalized AYA requires a paradigm shift to center and actively engage TGD communities with the goal of reducing disparities and promoting health equity. Therefore, we issue this call to action to engage with TGD AYA and cancer research in interdisciplinary, inclusive, and innovative ways.

Interdisciplinary

It is critical that cancer research among TGD AYA is interdisciplinary. Bewer²⁷ states an interdisciplinary approach involves “transcending of disciplinary boundaries, a sharing of knowledge, skills and decision-making, a focus on real-world problems and the inclusion of multiple stakeholders including patients, their families and their communities.” Additionally, diverse interventions are necessary to be effective and efficient with varied populations; this can only be achieved through an interdisciplinary approach.²⁸ Furthermore, tackling a problem as big as cancer in TGD AYA requires a collaborative effort and cannot be done by any one researcher.²⁸ Adopting an interdisciplinary approach with team-based care would also attempt to close the practice-knowledge gap that exists in practical fields, including reorientation of all researchers to the population needs.^28,29 Furthermore, scholars have identified benefits to interdisciplinary approaches including the creation of more equitable research questions, a diversity of positions on health concerns, and developing balanced and comprehensive research and practice frameworks.^30,31

Inclusive

Research must be inclusive of a diverse array of TGD AYA, including people of color, and with disabilities, varied gender expressions, and diverse family and home lives, in order to avoid past harms that occurred.³² We must also be inclusive in our research methodologies, ensuring our questions and methods do no harm, and anticipating potential misuses of our findings. Being inclusive in our research means moving beyond an individual-level understanding of cancer risks (e.g. risky sexual behavior) and identifying system- and societal-level risk factors (e.g. stigma and discrimination); this can reduce stigma by situating the risk of harm in cissexism rather than as inherent faults of a marginalized population. We argue that inclusive research attends to researcher positionality (e.g. researcher identities and contexts and how they may influence the research), centers research on the experiences of TGD AYA, and takes an explicit anti-racist, anti-oppressive framework.

Innovative

Traditional research methods have an important place in TGD AYA cancer research. Quantitative methods can be used to explore frequencies and differential experiences of cancer risks. Qualitative methods, such as focus groups and phenomenological interviews, can be powerful tools to better understand the unique experiences of TGD AYA and to identify new lines of inquiry. Large surveys, such as the United States Census and state-level YRBS surveys, should collect gender identity (and sexual orientation) as cancer risk-related questions, for researchers and public health workers to have better information about the prevalence and issues related to TGD AYA and cancer experiences.⁸ Moreover, innovative methodologies, such as community based participatory action research, photovoice, digital storytelling, poetic inquiry, and other arts-based methodologies subscribe themselves well to working with TGD AYA. These methods might be useful in teasing out nuanced information that can be used to improve the lived experiences of TGD AYAs navigating cancer and cancer risks.³³ Innovative methods and assessments may also include updated screening methods such as self-sampling for both cervical and anal cancers. In these methods a TGD person can use a urine collection device for primary HPV screening or a vaginal swab. These innovations must move away from historical strategies and focus on meeting the needs of and empowering TGD AYAs to engage in screening.

CONCLUSIONS

Approaching research from an interdisciplinary, inclusive, and innovative framework requires continual intentionality in assessing one’s own positionality and lens of inquiry as context in the formulation of research questions and design. This call to action requires that researchers pursue training in researcher humility and introspection of privilege,^34,35 alongside education in effective interdisciplinary and community scholarship. Scholars within this field must promote AYA TGD investigations through both ethical guidelines³⁶ and peer review. We urge cancer researchers and scholars to take these steps toward interdisciplinary research, inclusive methods, and innovative strategies. This is critical to reducing cancer risks among TGD AYA and shifting our understanding of how systems and society do harm and increase risks among TGD people. By placing the onus on the systems to change and centering our research on reducing risk and promoting resilience and well-being, we can reduce cancer risk and promote a comprehensive understanding of health among TGD AYA.

Statement of Public Health Significance:

Transgender and gender diverse adolescents and young adults are understudied in cancer research. This research brief calls attention to this major public health issue and issues a call to action for scholars.