data gaps on transgender and non-binary people prove costly – The Hill

The story at a glance


  • Information about transgender and non-binary Americans is sparse in official population statistics, effectively wiping out one of the nation’s most vulnerable populations.

  • Transgender people are not counted in official surveys like the US Census and are often misinterpreted on their birth certificates and driver’s licenses due to restrictive state laws that make it difficult to alter these documents.

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

Efforts to restrict access to gender-affirming health care for transgender youth and to prohibit transgender women and girls from participating in women’s sports teams or using facilities appropriate to their gender identity have increased. this year, with hundreds of bills introduced in state legislatures in more than half the country.

Experts say these policies are rarely data-driven, but large information gaps in the study of transgender issues and identities have made them difficult to successfully combat — or mitigate with organized resources that rely also on a set of missing data.

Transgender people – and LGBTQ people more broadly – ​​are not counted in official population surveys like the US Census and are often misinterpreted on official identity documents such as birth certificates, driver’s licenses and even death certificates, according to several surveys. The most reliable data on the experiences of transgender people in the United States 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, head of rapid response at 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 non-binary and uses gender-neutral pronouns, lives in Oregon — a state with a near-perfect Movement Advancement Project “gender identity policy” ranking for laws of the state that allow residents to self-select their gender designation. state-issued identity documents and protect LGBTQ youth and adults from gender discrimination in school or the workplace.

O’Hara said they were “thrilled” 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 non-binary on state-issued driver’s licenses and identification cards.

Over the next two years, O’Hara was also pleased with the federal government’s efforts to make gender-neutral designations more widely available on official documents like passports.

But O’Hara also received some disturbing news this year. In October, a study in Oregon found that more than half of transgender and non-binary people who died in the Portland metro area between 2011 and 2021 had been misinterpreted on their death certificates.

“When I found out that if I died tomorrow my death certificate would say ‘male’ or ‘female’, that was really disappointing,” O’Hara said. “I feel extremely lucky to live in a place with relatively few barriers to aligning our identity documents for trans and non-binary people. 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 opposed to change, especially when this change would mean the overhaul of an entire data system. to capture a group that represents less than 1% of the US population.

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

In the study, Repp and his co-authors note that the lack of data created by inaccurate death certificates can be costly: statistics drawn from these records often influence the allocation of state and federal resources for targeted social services and public health programs. Additionally, more than two-thirds of deaths among transgender and non-binary people in the study were attributed to suicide – a statistic that would otherwise have been lost.

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

The Oregon study reflects a much bigger problem than a reluctance to code another drop-down menu.

“People haven’t accepted the existence of transgender people at all,” Repp said. “That’s part of the problem.”

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

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

“Most traditional demographic surveys like the census that attempt to understand the US population have either previously failed to include transgender people or failed to acknowledge their existence and contributions to society,” said Olivia Hunt, chief policy officer. at the National Center for Transgender Equality. .

“More recently they have chosen to deliberately exclude us because they consider us too small a part of the population to be worthy of attention,” she said. “This means that we lack information about the needs of our community; what our community looks like.

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

More than 33,000 people have pledged to complete the online survey before it closes on Dec. 5, the 19th reported this week. A full report on the information gathered 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 his view on whether such research is actually used to inform policies the way they are intended.

“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 will do it regardless of what the data,” she said.

Legislation to restrict or ban gender-affirming health care for transgender youth has emerged in dozens of states this year, despite broad consensus among accredited medical groups that such care is safe and secure. medically necessary.

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

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

The federal government and Congress have taken some steps to gather more information about the country’s LGBTQ population, but progress has been slow. Closing these data gaps has largely been a priority for lawmakers who are part of the LGBTQ community.

In June, the House passed legislation that would direct more than 100 federal agencies to collect the demographic data needed to “evaluate needed changes in investigative methods related to questions of sexual orientation and gender identity.”

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

Movement on the 50-50 Senate bill has been non-existent. 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 two openly LGBTQ people serving in the upper house.