Respect Diversity + Inclusion

‘When a population is not counted, it is erased’: data gaps on transgender, nonbinary people prove costly

“Why is the community solely responsible for defining its very existence?"
A demonstrator holds up a sign during a march to mark International Transgender Day of Visibility in Lisbon, March 31, 2022. (AP Photo/Armando Franca, File)

Story at a glance


  • Information on transgender and nonbinary Americans is scant in official population statistics — effectively erasing one of the nation’s most vulnerable populations.

  • Transgender people are not counted in official surveys like the U.S. Census and are often misgendered on their birth certificates and driver’s licenses because of restrictive state laws that make it difficult for those documents to be amended.

  • Some steps have been taken at the federal level to collect more information on Americans’ gender identity and sexual orientation, but progress has mostly stalled.

Efforts to restrict access to gender-affirming health care for transgender youth and bar transgender women and girls from competing on women’s sports teams or use facilities that correspond with their gender identity ran rampant this year, with hundreds of bills introduced in state legislatures in more than half the country.

Those policies are rarely data-driven, according to experts, but large information gaps in the study of transgender issues and identities have made them difficult to successfully combat — or mitigate with curated resources that similarly rely on a wanting dataset.

Transgender people — and LGBTQ people more broadly — are not counted in official population surveys like the U.S. Census and are often misgendered on official identity documents like birth certificates, driver’s licenses and even death certificates, multiple inquiries have found. Most reliable data on the experiences of transgender people in the U.S. comes from self-report studies organized by groups like the Williams Institute or the National Center for Transgender Equality, which focus exclusively on LGBTQ policy issues.

“The only reliable information we have about trans people comes from trans people,” Mary Emily O’Hara, rapid response manager at the LGBTQ media advocacy organization GLAAD, told Changing America. “Why is the community solely responsible for defining its very existence?”


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O’Hara, who is nonbinary and uses gender-neutral pronouns, lives in Oregon — a state with a near perfect “gender identity policy” ranking from the Movement Advancement Project for state laws that allow residents to self-select their gender designation on official state-issued identity documents and protect LGBTQ youth and adults from sex discrimination at school or the workplace.

O’Hara said they were “elated” when they were able to change their gender marker to ‘X’ in 2020, when an Oregon appeals court upheld a 2017 law allowing people to identify as nonbinary on state-issued driver’s licenses and identification cards.

In the two years since then, O’Hara has been similarly pleased by efforts from the federal government to make gender-neutral gender designations more widely available on official documents like passports.

But O’Hara also received troubling news this year. In October, a study out of Oregon found that more than half of transgender and nonbinary people that died in the Portland metropolitan area between 2011 and 2021 were misgendered on their death certificates.

“When I found out that if I died tomorrow, my death certificate would read ‘male’ or ‘female,’ that was really disappointing,” O’Hara said. “I feel extremely lucky to live in a place with relatively few obstacles to aligning our identity documents for trans and nonbinary people. It doesn’t seem fair that all that could be taken away in a few moments by a medical examiner’s office.”

Dr. Kimberly Repp, chief epidemiologist for Washington County, Oregon and one of the study’s co-authors, told Changing America in an interview this week that the medical community is generally change-averse, especially when that change would mean revamping an entire data system to capture a group that accounts for less than 1 percent of the U.S. population.

“The want to be inclusive is absolutely not there,” she said.

In the study, Repp and her co-authors note that the data gap created by inaccurate death certificates can be costly: statistics pulled from those documents often influence the allocation of state and federal resources for targeted social services and public health programs. What’s more, over two-thirds of deaths among transgender and nonbinary people in the study were attributed to suicide – a statistic that would have otherwise been lost.

“When a population is not counted, it is erased,” Repp said.

The Oregon study reflects a problem far larger than an unwillingness to code another drop-down menu.

“People have not at all accepted that transgender folks exist,” Repp said. “That’s part of the problem.”

In a recent report from the Pew Research Center, roughly 60 percent of American adults surveyed said they believe a person’s gender is determined by their sex assigned at birth and cannot be changed, up from 56 percent in 2021.

At the same time, however, 44 percent of adults said forms and online profiles that ask about a person’s gender should include options other than “male” or “female” for people who do not identify as either.

”Most traditional population surveys like the census that try to understand the American population have previously forgotten to include transgender people or failed to recognize their existence and contributions to society,” Olivia Hunt, policy director at the National Center for Transgender Equality, told Changing America.

“More recently they’ve chosen to deliberately exclude us because they consider us to be too small a part of the population to be worth paying attention to,” she said. “That means we have a dearth of information on what our community needs; what our community looks like.”

The last major survey of transgender Americans — organized by the National Center for Transgender Equality — was released seven years ago, in 2015. The group’s 2022 U.S. Trans Survey, a project initially planned for 2020 but delayed by the pandemic, is currently underway.

More than 33,000 people have pledged to complete the online survey before it closes December 5, The 19th reported this week. A comprehensive report on the collected information will be available next year, Hunt said.

Hunt stressed the importance of having accurate data that reflects the lived experiences of transgender and gender-nonconforming Americans, but added that the past year has soured her views on whether such research is actually used to inform policy the way it is intended to.

“When people have decided that it would be politically advantageous for them to hurt another group of people — even if it’s a group of people they know nothing about — they’ll do so regardless of what the data shows,” she said.

Legislation meant to restrict or ban gender-affirming health care for transgender youth has popped up in dozens of states this year, despite widespread agreement among accredited medical groups that such care is safe and medically necessary.

In July, the sponsor of one such measure in Ohio admitted to never having met a transgender person. In Florida, where the state Board of Medicine and Board of Board of Osteopathic Medicine voted recently to ban gender-affirming care for minors, state government officials misrepresented the work of at least 10 medical researchers, a Vice investigation found.

“We can have as much data as we do have, and we can generate more data, but what we really need to do is get that information out there to the general public so they can realize that they’re being lied to about trans people,” Hunt said.

There have been some steps taken by the federal government and Congress to collect more information on the nation’s LGBTQ population, but progress has been slow going. Filling those data gaps has largely been a priority of lawmakers who are part of the LGBTQ community.

In June, the House passed legislation that would charge more than 100 federal agencies to collect demographic data required to “assess needed changes in survey methods related to asking questions on sexual orientation and gender identity.”

“Good policy is informed by good data,” Rep. David Cicilline (D-R.I.), co-chairman of the Congressional LGBTQ+ Equality Caucus and one of the bill’s cosponsors, said in June.

Movement on the bill in the 50-50 Senate has been nonexistent. A similar measure was introduced last year by Sen. Tammy Baldwin (D-Wis.), the first openly gay person ever elected to the Senate and one of just two openly LGBTQ people serving in the upper chamber.