Leading health experts have criticised the federal government for suggesting proposed LGBTQI+ questions should be excluded from the census because they were “too complex” – arguing similar questions are already used elsewhere.
Versions of the proposed questions have been answered by 85,000 Australians in existing health surveys administered by the Australian Bureau of Statistics.
But the lack of population-wide data has left large gaps in research, with leading health bodies calling on the government to reverse its decision to ensure every Australian was counted.
The prime minister, Anthony Albanese, said on the weekend the proposal to include questions on sex, gender and sex characteristic variations in the census was scrapped because “there were some draft questions which we felt … could have created confusion”.
Labor minister Amanda Rishworth suggested the questions were ditched because the government had been shown “questions that were very complex”.
However, Dr Bridget Haire – a senior research fellow at the Kirby Institute and the school of population health at the University of New South Wales, who worked on the census proposal – questioned that reasoning given the questions were already in use.
“I just don’t think that it’s too complex,” she told Guardian Australia. “The fact it has been used significantly already shows that it’s not too complex. These questions are asking things that we need answers to.”
Haire said the questions were based on the existing ABS standard, had been tested through focus groups, and in some cases had been simplified beyond what was already in use.
For example, the term heterosexual had been changed to straight, as it was better received, while the term queer was removed, given it did not test as well.
It was proposed trans or gender identity would be inferred by a two-step process: what was your sex reported at birth, and what is the gender you identify with. For a cisgender person, the sex reported at birth and the gender you identify with would be the same; for a trans person or gender diverse person, it would be different.
When it came to the question on innate variations of sex characteristics, Haire said the proposal was also planned to have been quite simple: have you ever been diagnosed with a variation of sex characteristics, also known as DSD (differences in sex development) or intersex?
The questions were not yet finalised but, based on the existing standard for how the ABS phrases its queries and the work being done in the early focus groups, advocates did not believe the questions would be too complex for the average Australian to answer.
But they would provide crucial data on some of Australia’s most marginalised groups.
“We don’t know the number of people in these populations,” Haire said.
“We don’t even have a rough ballpark real number of people in trans and gender diverse populations, or people living with variations of sex characteristics. So we don’t know how many there are.
“We don’t know where they live and we don’t know how any kind of intersection works with the sorts of social determinants of health that you can see from census data.”
Haire said while previous research gave a sense of some of the issues affecting people, there was no denominator to inform understanding of data in broader contexts.
“The census is what gives you the denominator that enables all other samples to be looked at in relation to that,” she said.
Major health institutes have called on the federal government to reverse its decision to dump the questions, saying the data was “critical” for identifying health needs.
The health bodies, including the Kirby Institute, the Centre for Social Research in Health and the Australian Human Rights Institute, released a joint statement on Thursday arguing the questions were needed to fill gaps in much-needed research.
“Accurate and inclusive approaches to data collection are essential for addressing health disparities among gender and sexuality diverse populations and among people with innate variations of sex characteristics,” the statement said.
“As researchers working with LGBTI+ populations, we often rely on data from smaller targeted studies … this limitation can lead to information gaps that impact our understanding and ability to address the specific health needs of these populations effectively.”
While the government has said there will be a question on sexual orientation, it has not reversed the decision to cancel work on the other questions which would give a baseline on the number of trans, gender diverse and people with variations of sex characteristics.
The treasurer, Jim Chalmers, said he believed the cabinet took “collective responsibility” for the decision but repeated the line that the census would not be held until 2026.
“We know that we need to do the work in advance. I’m confident that we’ll get it right,” he said on Wednesday.
“And I’m confident that getting it right means being as inclusive as we can be when it comes to the census.
“To be really clear about that, I say to members of the Australian community who were disappointed about the public discussion around this last week, I take my share of the responsibility for that, and we take collective responsibility for getting it right in the future, and I’m confident that we will.”
The health institutes that released the statement included the Kirby Institute, the Centre for Sex and Gender in Health and Medicine, the Centre for Social Research in Health, the Social Policy Research Centre, the Australian Research Centre in Sex, Health and Society, UNSW’s Community of Practice for Inclusive Research with Queer and Trans People and People with variations of sex characteristics (Intersex), and the Australian Human Rights Institute.