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Gender identity and sexual orientation should be included in COVID-19 testing

We don’t have the data we need regarding vulnerable communities like LGBTQIA+.

A gay pride rainbow flag flies along with the US flag in front of the Asbury United Methodist Church in Prairie Village, Kan.Charlie Riedel/Associated Press

Last week, Governor Tom Wolf of Pennsylvania announced that his state would include sexual orientation and gender identity among the demographic data collected in COVID-19 testing and contact tracing.

This is something that every state in the country should be doing.

Until there are better treatment options and a vaccine for COVID-19, the most potent weapon in the fight against the coronavirus is information and data. If health officials do not know how the virus is moving through communities and who is most vulnerable to COVID-19 infections, health complications, and fatalities, then efforts at mitigation and containment will not be as effective as they must be.


That’s why Massachusetts Secretary of Health and Human Services Marylou Sudders issued a public health order April 8 requiring the collection of racial and ethnic data in COVID-19 testing. She described it as a “moral obligation” to collect these data in order to “better understand where the burden of illness and death is falling.”

No one is surprised that in Massachusetts and around the country, there are deep disparities in the rates of infections and COVID-19-related health complications between Black, Latinx, and Native American people and their white, non-Hispanic counterparts.

But those of us who study the population health of lesbian, gay, bisexual, and transgender (LGBTQIA+) people would also expect to find similar COVID-19-related disparities between sexual and gender minorities and their straight, cisgender peers. Due to experiences of discrimination in health care settings as well as the impact of stigma and minority stress on health, LGBTQIA+ people are also more likely to have some of the underlying health conditions such as chronic lung disease, cardiovascular disease, and diabetes that correlate with COVID-19 fatalities in Massachusetts.

LGBTQIA+ people of all races — like Black and Latinx people — are more likely to work in professions designated as essential and which have seen high rates of COVID-19 infection, such as health and personal care, food preparation, delivery and sales, child care, and sanitation. LGBTQIA+ people of all races are also more likely to live in the dense urban areas where physical distancing measures are much harder to maintain and have emerged as COVID-19 infection hotspots. These include Chelsea, Brockton, Lowell, and Lawrence as well as the Boston neighborhoods of Dorchester, East Boston, Hyde Park, Mattapan, Roslindale, and the South End. And Massachusetts residents living in poverty, who are less likely to have safe and stable housing as well as consistent access to nutritious food, are disproportionately more likely to be lesbian, gay, and bisexual as well as Black and Latinx.


In 2011, the Institute of Medicine published a report on how to build a foundation for better understanding of the health of LGBTQIA+ people. But it noted that the “body of evidence assembled to date” to do this work was “sparse.” The authors concluded: “Like race and ethnicity data, data on sexual and gender minorities should be included in the battery of demographic information that is collected in federally funded surveys” in order to devise measurable interventions to mitigate the “barriers to equitable health care” that LGBTQIA+ people experience.

We know how to collect these data from patients. Since 2015, electronic health records have been required to have these fields. And Massachusetts, which has long been a leader in health, education, and civil rights issues affecting LGBTQIA+ people, has been asking questions about sexual orientation in public health surveys since 1993. In 2007 it began collecting information on gender identity.


The state has already mastered several daunting challenges related to COVID-19 data collection. At Governor Charlie Baker’s insistence, Massachusetts became one of the first states in the country to build a new system from scratch that can accept unemployment insurance claims from self-employed and gig economy workers. And, as Baker explained at a recent press briefing, the state took less than 30 days to build a new customer relations platform for its contact tracing program “that can scale to enormous size” and communicate with the state’s existing public health data management system.

COVID-19 doesn’t discriminate. But it does affect some groups of people much more so than others. Until the state collects all the data required to study the ways in which COVID-19 is affecting communities that already experience disparities in health, it will not have all of the information needed to devise interventions, such as targeted testing, to defeat the coronavirus.

Sean Cahill is the director of Health Policy Research at The Fenway Institute at Fenway Health and author of the policy brief, “Coronavirus, COVID-19, and Considerations for People Living with HIV and LGBTQIA+ People.”