LGBTQ+ participation in cancer clinical trials: Ensuring justice and data equity

This case study considers LGBTQ+ participation in cancer clinical trials as an issue of justice and data equity in research ethics. Although representation of LGBTQ+ people in clinical trials varies depending on the type of cancer, routine data collection of gender and sexual orientation in clinical trials is inconsistent, leading to underrepresentation in routine reporting. Improving LGBTQ+ participation in cancer clinical trials ensures more ethical and inclusive research, supporting the principle of justice, and enabling more accurate data collection practices to support LGBTQ+ health. This case study draws on findings from a pilot study involving a scoping review and key informants’ interviews in Australia to understand barriers and facilitators to LGBTQ+ participation in cancer clinical trials. A key issue identified is that gender and sexual orientation are not routinely collected in cancer clinical trials, and that while most professionals working in cancer clinical trials do not object to collecting this data, further education and resourcing is needed to support them to do so effectively. The case study provides key recommendations for improving LGBTQ+ participation in cancer clinical trials, including supporting minimum data requirements for gender and sexual orientation in cancer clinical trials, providing further training and support for workforce capacity, and upskilling ethics committees regarding LGBTQ+ data equity.