Sexual Orientation, Gender Identity Data Needed in Oncology Patient Care


There has been a historical lack of complete or appropriate data on sexual and gender minority groups, leading to difficulties in analyzing health outcomes in LGBTQ+ community.

In 2022, 7.1% of the US adult population self-identified as a part of the LGBTQ+ community, yet data on sexual orientation and gender identity is still largely uncollected in the oncology setting, according to Leslie Harris, PharmD, BCOP, during a presentation at the HOPA Annual Conference 2023. Further, the number of self-identified LGBTQ+ US adults has grown from 5.6% in 2020.

Gender identity is still largely uncollected in the oncology setting, according to a presentation at the HOPA Annual Conference 2023. Credit: Iliya Mitskavets -

Gender identity is still largely uncollected in the oncology setting, according to a presentation at the HOPA Annual Conference 2023. Credit: Iliya Mitskavets -

This suggests that there may be a trend of more individuals coming out of the closet, which is further supported by the fact that approximately 21% of Generation Z US adults (those born between 1997 and 2003) identified as LGBTQ+ in 2022. That is nearly double the proportion of millennials who have self-identified as such.

Additionally, a 2017 literature review of surveys done with youth who identified as LGBTQ+ reported significantly higher depressive symptomology and suicidal ideations (30% vs 6%, p<0.0001), and self-harm behaviors (21% vs 6%, p<0.0001). There is also an increased rate of high-risk sexual behaviors, which can lead to an increased risk of sexually transmitted infections. Further, 34% of the youth surveyed reported experiencing bullying in school, 18% stated they experienced forced sex, 23% were the victims of sexual violence, and 18% experienced physical violence across 10 states in the country.

“There are so many other things are going on outside of where we see the patient in clinic, in the hospital, or in the community pharmacy—so many other things are having an impact,” Harris said. “That's what we're trying to pull in so we can get a complete picture.”

Additionally, for those youths who experience family rejection at home, there is an association with lower self-esteem and worse health outcomes for these individuals.

“If these youths are forced to leave home, they have a higher incidence of poor physical and mental health, and they tended to [begin habits such as] smoking tobacco, drinking alcohol, and starting hard drugs at a much younger age and continuing on through life,” Harris said. “Looking at cancer in sexual and gender minority groups—cancer risk disparities are multifactorial for everyone. There's a huge amount of social and environmental factors.”

In particular, a few studies have shown an increased risk of prostate, testicular, anal, and colon cancer in gay men, as well as an increased risk of HIV, HPV, and hepatitis, which can lead to their own types of cancers down the road. Additionally, a multivariate analysis showed that gay and bisexual men had greater odds of receiving colorectal cancer tests, but had lower odds of receiving routine prostate exams than heterosexual men.

“They also found an increased risk of breast, ovarian, and endometrial cancers in women that identified as lesbian or bisexual,” Harris said. “That's probably due to fewer full-term pregnancies, fewer mammograms, and an increased incidence of obesity in our population, [which is] mostly prevalent in homosexual women from an African American community and low socioeconomic status.”

Further, there is a significant lack of culturally sensitive screening services for this population, which can lead to a decrease in seeking out these services due to a sense of a lack of safety in these settings, according to Harris. There has also been a historical lack of complete or appropriate data on sexual and gender minority groups, so there's not much data available for assessment and analysis.

“So that's why we're talking about what we do have and where we can go from here,” Harris said. “Breast cancer and prostate cancer can be in transfeminine and transmasculine individuals, and there's no assumptions we can make about things like that. HIV-driven cancers, we mentioned, are at higher risk in this population, and then gynecological cancer, cervical cancer, or ovarian cancer screenings—that could be very difficult for a transmasculine person who is on testosterone, where not only could the sexual organs have changed shape or dimensions, but it also could just be very triggering for them to be in that situation and in that environment.”

In 2022, there were 1.64 million people over the age of 13 years in the United States who identified themselves as transgender; approximately 400,000 are estimated to be diagnosed with cancer during their lifetimes. However, it's still quite difficult to recruit LGBTQ+ patients into clinical trials, especially in the transgender population, to assess the efficacy and safety of oncology treatments in this population. Currently, a significant problem remains the potential for presumptive links between sex assigned at birth and what anatomy the patient currently has.

“I work with a lot of phase 1 clinical trials, and you're starting to see more [LGBTQ+] persons, as [investigators] are trying to be more inclusive. But it means we need to make sure that they are included and that our providers who are enrolling the patients are aware of that,” Harris said.

Further, Harris explained that investigators should not be excluding any patient from a clinical trial without a necessity to do so. For example, Harris noted that HIV is no longer an exclusion for oncology clinical trial participation due to the realization that, as long as the HIV is controlled, it shouldn't affect outcomes in cancer.

“So it needs to be we want to make sure it's scientifically indicated if we're going to exclude somebody, not just because it's easier, or ‘Well, a transgender patient will just cloud the issue,’” Harris said. “That's not a good enough reason anymore.”


Leiva M, Harris CS, Harris L. Incorporating Sexual Orientation and Gender Identity Data into Oncology Patient Care. Presented at HOPA Annual Conference 2023 in Phoenix, AZ; March 31, 2023.

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