Don Dizon, MD on Challenges in Collecting Gender Identity and Sexual Orientation Data in Clinical Cancer Research

In an interview with CancerNetwork®, Don Dizon, MD, FACP, FASCO, director of women’s cancers at the Lifespan Cancer Institute, director of medical oncology at Rhode Island Hospital, and professor of medicine at the Warren Alpert Medical School of Brown University in Providence, highlighted challenges with collecting gender identity and sexual orientation data in clinical cancer research. As patients cannot currently be identified based on sexual orientation or gender identity, it is not currently possible to assess outcomes of patients in the Lesbian, Gay, Bisexual, Transgender, and Questioning plus (LGBTQ+) community.

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The biggest challenge is that we don’t do it. The problem with that is because LGBTQ+ individuals are not identified as such in our research databases, there’s no way for us to even start examining their outcomes. This is particularly relevant for transgender individuals, in whom gender-affirming hormone therapy is part of their normal lives. These are folks who may or may not have had gender-affirming surgeries. [Seeing] what their experience has been on therapeutic clinical trials is important, especially when you consider, for example, [that] we base so much of the way we dose drugs for toxicity sake on a basic question: Are you male or female? If one was assigned female at birth, but has realized their gender is male, that presents a dilemma. How do you dose this individual safely? We don’t even know the correct answer to that most basic question, but we would want to know what the outcomes were. Does standard therapy work as well in a transgender patient [as] it does in a cisgender patient, for example? These are critical questions, especially as we're trying to achieve equity, not only terms of access, but in terms of outcomes.