LGBTQ+ Cancer Disparities, Data Gaps, and the Clinical Stakes of Invisibility

LGBTQ+ Cancer Disparities, Data Gaps, and the Clinical Stakes of Invisibility

LGBTQ+ patients continue to face significant cancer disparities driven by gaps in sexual orientation and gender identity (SOGI) data collection, limited inclusion in clinical trials, and clinical systems built around cisgender and heterosexual assumptions. In this expert commentary, Mandi L. Pratt-Chapman, PhD, explores how invisibility in oncology research affects screening, treatment, survivorship, and outcomes for LGBTQ+ populations—and outlines practical, evidence-informed strategies clinicians can implement now to improve inclusive cancer care.

Introduction: Clear Disparities Despite Data Gaps

Understanding cancer disparities in LGBTQ+ populations is harder than it should be — not because the disparities do not exist, but because we have not built the systems needed to see them clearly. When I think about the evidence base for LGBTQ+ cancer care, three facts are striking: a profound lack of data, minimal and inadequate inclusion in clinical trials, and health disparity signals that have emerged even in the absence of comprehensive evidence.1

Without data, we cannot quantify disparities. Without inclusion of LGBTQ+ people in clinical trials, we cannot understand how sexual behaviors, nonheteronormative relationships, and gender-affirming hormones influence cancer screening pathology, cancer treatment responses and side effects, survivorship outcomes and financial toxicity. Without that evidence, screening and treatment guidelines cannot be tailored. And without tailored guidelines, the care that LGBTQ+ patients receive will continue to be built on evidence generated from populations that do not reflect them.

The result is a compounding cycle of invisibility that has real consequences for health outcomes — and that is being made harder to address in the U.S. by the current political moment.

The Data Gap: What We Cannot See, We Cannot Fix

U.S. cancer registries do not collect sexual orientation and gender identity (SOGI) data. This means that at the population level, we cannot estimate cancer incidence, survival rates, or treatment outcomes by SOGI. We are making do with incomplete information — and the gaps in that information are not randomly distributed. They fall disproportionately on a population that already faces elevated cancer risk and barriers to care.

Progress was being made. In the years before 2025, there was meaningful momentum toward routine SOGI data collection in oncology electronic health records. The National Cancer Institute funded a number of cancer centers to learn more about successful implementation of SOGI data collection.2 That momentum has largely stalled. In the current federal and state political environment, advocating for SOGI data collection has become significantly harder. Some institutions have pulled back. Others are exploring ways to better protect patient data.

I am, to be honest, conflicted about this. I still believe that patients need to be able to share what is important to them with their doctors to tailor care--and we desperately need population-level SOGI data to inform screening, treatment and survivorship care recommendations. And I am also genuinely concerned about data safety in the current environment, where government demands for sensitive demographic and health information are not hypothetical risks. A study I am currently conducting, the SGM-Affirming Facts and Experiences (SAFE) Study, is designed to understand how LGBTQ+ patients and providers feel about sharing this information now and how to create conditions that allow for appropriate tailoring of clinical and supportive care without putting LGBTQ+ people at risk.

What I can say clearly is this: the barrier to SOGI disclosure, when the right conditions exist, is not patient reluctance.3 Patients want to be seen. The barrier is whether the clinical environment makes disclosure safe; whether institutions have built the systems to ask questions appropriately; and whether the confidentiality and privacy protections we have long held sacrosanct to clinical care and research are upheld by our institutional leadership and legal systems.

Clinical Trial Inclusion: Counted But Not Measured

LGBTQ+ individuals are enrolled in cancer clinical trials. The problem is that they are invisible. A 2023 abstract presented at ASCO found that only approximately 6% of cancer clinical trials reported SOGI data.4 This means that LGBTQ+ patients contribute to the evidence base that shapes cancer care — and receive none of the tailored insights that would come from being identified within that evidence base.

The implications extend in several directions. Most directly: we cannot report outcomes or treatment response by SOGI if we have not collected it. We do not know whether LGBTQ+ patients respond differently to specific treatments, experience different toxicity profiles, or have different survivorship needs—because we have not looked.5

There are also more structural concerns. Eligibility criteria that are written with heteronormative or cisnormative assumptions can inadvertently exclude transgender individuals from trials they should be able to access. Dyadic study designs — those that enroll couples or partner dyads — may be structured in ways that exclude queer individuals whose relationship structures do not fit an assumed heteronormative model. And when transgender individuals are enrolled without their hormone exposure or anatomical differences being captured, the trial produces findings that may not be applicable — or may be actively misleading — for that population.

What We Know Anyway: Disparities are Clear even without Complete Data

Despite the data gaps, meaningful signals have emerged. LGBTQ+ individuals have historically higher rates of tobacco and alcohol use — driven by targeted tobacco industry marketing and the social role of bar culture in communities that faced significant exclusion from other social spaces.6 These elevated rates translate directly into elevated cancer risk across multiple cancer types.

Cancer screening rates are lower among LGBTQ+ populations, driven in part by clinical environments and messaging that are designed around cisgender, heterosexual norms.7 A transgender man who retains a cervix may not receive cervical cancer screening reminders—and even if they do get screened, the pathologist may not correctly read their results. A transgender woman with a prostate may not be counseled about prostate cancer risk. As long as screening recommendations are organized around presumed sex, LGBTQ+ patients fall through the cracks.

These gaps in screening access contribute to later-stage diagnoses, which in turn affect outcomes.

LGBTQ+ Patients and the Treatment Evidence Gap

One of the most clinically urgent evidence gaps concerns transgender patients receiving oncologic treatment alongside gender-affirming hormone therapy. How should we extrapolate National Cancer Center Network guidelines for genetic testing referral for transgender patients? How should a physician discuss gender affirming hormonal therapy continuation or discontinuation with a transgender person diagnosed with hormone-positive breast cancer? Is estrogen therapy protective for transgender women diagnosed with colorectal cancer? What is the effect of estrogen on liver cancer metastases?

Supportive care interventions are also not often tailored for the LGBTQ+ population. How can people who have anal receptive sex best manage anal stenosis after radiation therapy? Does residence in a state with anti-LGBTQ laws increase allostatic load and, in turn, increase cancer risk? The exponential increase in anti-LGBTQ state and federal laws – legally sanctioned discrimination - will have serious downstream negative health effects on our community.

The truth is, we have a lot of unanswered questions when it comes to optimal cancer care for LGBTQ+ people.

Shared decision-making — with explicit acknowledgment of what is and is not known — is the ethical standard in these situations. It requires clinicians to be comfortable saying "the evidence does not yet address your specific situation" while still offering a thoughtful, individualized clinical recommendation. It also requires attending to the values and preferences of patients who have often had to advocate for themselves within healthcare systems that were not built with them in mind.

There is a real risk that the current environment's chilling effect on SOGI-inclusive research will widen this evidence gap rather than close it. Cooperative group studies that were beginning to build the infrastructure for SOGI oncology data collection have been put on hold. Registry efforts that would have created a foundation for future research have been paused. The cost of that pause will be measured in patients whose care is guided by inference rather than evidence.

What Clinicians Can Do Now

In the absence of comprehensive data and tailored guidelines, there are still meaningful steps that oncology clinicians and teams can take.

De-gendering clinical environments — ensuring that language, materials, forms, and physical spaces are inclusive rather than organized around binary sex assumptions — is a baseline practice that does not require regulatory approval or institutional restructuring. Let me be clear: I am not suggesting that cisgender and heteronormative people be excluded, either. What I am calling for is interest, attention and compassion with a will to provide care that can optimally serve every patient that needs care. This might look like de-gendering clinic space and offering options for garments beyond pink or floral gowns.8 It also requires will and attention to a patient’s name, gender presentation, pronouns, and body terminology.

Anatomy-based cancer screening — recommending screening based on the organs a patient has — is a practical strategy that can be applied now. The United States Preventive Services Task Force,9 the National Comprehensive Cancer Network10- and the American Society of Clinical Oncology11,12 have committed to incorporating anatomy-driven screening and treatment recommendations.

Paying attention to patient cues — the language patients use to describe themselves, their bodies, and their relationships — and mirroring that language respectfully is a communication practice that costs nothing and signals to LGBTQ+ patients that the clinical environment is safe enough to be honest in.

And for those who collect SOGI data in their practice: continue, think carefully about safeguards. The data we generate now, in settings with strong confidentiality protections, is the foundation for the evidence that will improve care for this population in the future. However, if that data could be used against your LGBTQ+ patients, there is a need for intentional leadership commitments and protective policies ensuring these data will not be shared outside clinical teams even if requested by government officials.

Clinical Implications and Practice Takeaways

• Adopt anatomy-based cancer screening. Organize screening recommendations around what organs a patient has — not the sex or gender marker in their record. This is both more clinically accurate and more inclusive for transgender, gender-diverse and cisgender patients.
• Talk to patients about sexual needs and concerns and tailor care based on hormone exposure, anatomy and support networks. Identify potential contraindications, medication adjustments and tailored support groups for LGBTQ+ people.
• Talk to patients about who sees information in their medical record and whether they want you to document sexual orientation and gender identity in the EHR. We currently do not know if longstanding assumptions of confidentiality and privacy protections will legally be upheld if government representatives request data.
• Recognize heteronormative and cisnormative assumptions in clinical trial eligibility. Review eligibility criteria, dyadic study designs, and outcome measures for assumptions that inadvertently exclude LGBTQ+ participants or produce findings that cannot be applied to them.
• Practice shared decision-making with explicit acknowledgment of evidence gaps. For transgender patients receiving oncologic treatment with potential interactions with gender-affirming care, name what is not known, involve the patient in the decision, and document accordingly.
• De-gender clinical environments. Forms, signage, language, and staff training all contribute to whether LGBTQ+ patients feel safe disclosing their identities and engaging fully with their care. Follow the cues of your patient and choose language and care accordingly.

Patient Perspective: What This Means for You

If you identify as LGBTQ+ and are navigating cancer — at any stage, from screening to survivorship — your experience may look different from what clinical guidelines were designed around, because those guidelines were built primarily on data from cisgender, heterosexual populations. That is a system failure, but you still deserve excellent, timely, affirming cancer care. You have the right to ask your care team about anatomy-appropriate screening, to disclose or decline to disclose your SOGI on your own terms, and to expect that your specific anatomy, hormone history, and identity are explicitly considered in your care delivery. If you encounter a clinical environment that does not feel safe or affirming, contact the National LGBT Cancer Network or GLMA to find a physician committed to providing the care you deserve.13,14

Key Takeaways

• U.S. cancer registries do not collect SOGI data, making it impossible to estimate cancer incidence, survival, or treatment outcomes for LGBTQ+ populations at the population level — a foundational data gap that compounds every other disparity challenge.
• Only approximately 6% of cancer clinical trials report SOGI data, meaning LGBTQ+ patients contribute to the evidence base without the field generating the knowledge that would allow their care to be tailored based on that contribution.
• Disparity signals are clear even without comprehensive data: elevated tobacco and alcohol use driven by targeted marketing and minority stress, lower screening rates in gendered clinical systems, and later-stage diagnoses all document the real health consequences of systemic exclusion.
• Transgender patients face an acute evidence gap at the intersection of oncologic treatment and gender-affirming care — a gap that is at risk of widening as the current political environment chills SOGI research infrastructure.
• Practical, immediate steps exist: anatomy-based screening recommendations, SOGI data collection with strong safeguards, de-gendered clinical environments, and shared decision-making with honest acknowledgment of evidence gaps can improve LGBTQ+ cancer care now, without waiting for a more complete evidence base.

References

1. Pratt-Chapman ML, et al. Strategies for advancing sexual orientation and gender identity data collection in cancer research. JCO Oncol Pract. 2024.
2. Cathcart-Rake EJ, et al. Sexual orientation and gender identity data collection in cancer care: a nationwide landscape assessment update. JCO Oncol Pract. Published online. doi:10.1200/OP.23.00724
3. Dickstein DR, et al. Do ask, do tell: improving health outcomes for sexual and gender minorities with cancer. JNCI Cancer Spectr. Published online. doi:10.1093/jncics/pkad075
4. Cathcart-Rake EJ, et al. Sexual orientation and gender identity data collection among NCI Community Oncology Research Program (NCORP) practices: a 5-year landscape update. J Clin Oncol. 2023;41(16 suppl):6548. doi:10.1200/JCO.2023.41.16_suppl.6548
5. Pratt-Chapman ML et al. All research is LGBTQI research: Recommendations for improving cancer care through research relevant to sexual and gender minority populations. Annals of LGBTQ Public Health. 2022. doi:10.1891/LGBTQ-2021-0001
6. American Cancer Society. How tobacco harms LGBTQ+ communities. Accessed May 3, 2026.
7. Heer E. Participation, barriers and facilitators of cancer screening among LGBTQ+ populations: a review of the literature. Prev Med. 2023. doi:10.1016/j.ypmed.2023.107478
8. Alpert AB et al. I’m not putting on that floral gown: Enformcement and resistance of gender expectations for transgender people with cancer. Patient Educ Couns. 2021. doi: 10.1016/j.pec.2021.03.007
9. Caughey AB, et al. USPSTF approach to addressing sex and gender when making recommendations for clinical preventive services. JAMA. 2021. doi:10.1001/jama.2021.15731
10. National Comprehensive Cancer Network. NCCN language guidance: sensitive, respectful and inclusive language for NCCN publications. 2025.
11. American Society of Clinical Oncology. Strategies for reducing cancer health disparities among sexual and gender minority populations. Position statement. 2017.
12. Pratt-Chapman ML, et al. State of cancer care in America: achieving cancer health equity among sexual and gender minority communities. JCO Oncol Pract. 2023.
13. National LGBT Cancer Network. Welcoming screening providers. Accessed May 3, 2026.
14. GLMA: Health Professionals Advancing LGBTQ Equality. Find LGBTQ+ friendly healthcare near you. Accessed May 3, 2026.

About the Author

Mandi L. Pratt-Chapman, PhD, is Associate Center Director for Scientific Communications and Dissemination at the George Washington University Cancer Center, Professor of Medicine at the GW School of Medicine and Health Sciences and Professor of Prevention and Community Health at the GW Milken Institute School of Public Health. A queer-identifying researcher and nationally recognized leader in LGBTQI cancer equity, her work spans sexual orientation and gender identity (SOGI) data collection, patient navigation, cancer survivorship, and evidence-based cancer control. She led the development of national, consensus-based core competencies for oncology patient navigators, co-authored four holistic clinical practice guidelines on survivorship care, and served as co-PI on the CDC-funded National Cancer Survivorship Resource Center. She is the recipient of the 2021 NIH Sexual and Gender Minority Research Early-Stage Investigator Award, the 2022 Tigerlilly Foundation Distinguished Hope Award and the 2025 American Association of Cancer Centers Clinical Research Award. She has received thirteen years of continuous funding from the CDC and four contracts from the Patient Centered Outcomes Research Institute for her health equity work.