Since April 2020, researchers at the Harvard GenderSci Lab have been tracking COVID-19 cases and fatalities by sex/gender across 53 US states and territories, providing weekly updated numbers on the “US Gender/Sex COVID-19 Data Tracker.” This blog post documents the current state of COVID-19 sex/gender data, explains the need for more inclusive reporting, and shows how existing data suggest that trans and gender-expansive people are at increased risk of adverse COVID-19 health outcomes during the pandemic due to inequality, stigma, and structural violence. Although there are crucial gaps in existing data, there is sufficient evidence to suggest that the conditions of the pandemic amplify existing inequalities experienced by trans and gender-expansive people.

Collection of data is not without risk as heightened visibility in public health discourse may contribute to increased stigma and violence against trans and gender-expansive people. Those leading data collection efforts must recognize histories of surveillance and abuse of the LGBTQ community by medical researchers. Harmful and unethical studies have undermined the trust between these communities and researchers. Nonetheless, there is a great need for community-based research with inclusive categories of gender/sex that is of direct benefit to LGBTQ communities. Furthermore, public health data collection should go beyond just adding sex/gender categories and address the complexity of social influences on health outcomes. A recent survey of trans and gender-expansive people suggests two strategies for collecting inclusive sex/gender data: one question that asks for sex assigned at birth and a second one that asks about gender identity, or one question that asks for gender identity with a second that asks if the person identifies as transgender. Another research group recommends a three-part questionnaire that asks for the participant’s sex assigned at birth, gender identity, and lived gender. Other recommendations include an option to check multiple categories or write in a gender identity. All of these would make public health data collection about sex/gender more inclusive. While public health data collection may never be able to capture the full lived experiences and identities of gender-expansive people, citizen science campaigns and community-driven data collections may also be a means to circumvent some of the ethical issues posed with government-collected data.

We join a growing coalition of doctors, politicians, activists, and researchers that demand the consideration of trans and gender-expansive people in public health data collection. There is important wisdom in how LGBTQ communities have navigated community building and support in response to past pandemics such as HIV/AIDS. We can learn from their histories of community resistance and resilience.

Perret M, Jillson K, Danielsen AC, Trinh M-H, Zubizarreta D, DuBois LZ (2021) COVID-19 Data On Trans And Gender-Expansive People, Stat!, Health Affairs