‘Prioritisation of gender identity’ exacerbates ‘female data gap’

Journals and ethics committees are exacerbating the “female data gap” by requiring researchers to record the gender identity rather than sex of participants in surveys and medical trials, a paper argues.

Research administrators, editors and publishers need to consider the “ethical implications” of practices which alienate female participants and risk corrupting data, according to the article by study participants, academics and a health consumer advocate.

The paper, published in the Journal of Academic Ethics, says participants and academics are confused by terminology about sex, gender and gender identity, which are often used interchangeably.

Some women are so frustrated at finding their sex overlooked that they withdraw from studies. Others may not have participated in the first place if they had known they would be referred to as “menstruators” or “birthing people” in the finished articles.

“Studies have increasingly not requested information about our sex, even when sex is critically important to the research topic,” the paper says. “[This] diminishes research quality, is unethical, and constitutes a form of sexism.”

Corresponding author Karleen Gribble said her key concern was that vital information was being excluded, making it impossible for researchers to disaggregate their findings by sex. She said recent studies of the health research workforce and parenting-related discrimination in the workplace, for example, had been “impeded” by the failure to collect sex data.

She was also concerned about data “corruption” through the inaccurate recording of people’s sex. “It matters in situations where outcomes are rare in one sex and not the other,” said Gribble, an adjunct professor in Western Sydney University’s School of Nursing and Midwifery. “If a few people are mis-recorded in the rare group, that can skew the data quite seriously.”

Gribble said academics were confused and even scared about how to delineate between sex and gender identity, and guidance on how to articulate survey questions sometimes came from universities’ equity and inclusion offices rather than ethics committees. She questioned the assumption that gender identity was ubiquitous.

“Ethics committees need to be providing better guidance. They’re failing in their duty if they do not ensure that social moves towards prioritising gender identity over sex are not detrimental to efforts towards closing the female data gap.”

Lead author Madeleine Munzer said she had participated in studies into birthing and parenting after volunteering as a breastfeeding counsellor and realising that a lot of advice to new mothers lacked scientific groundings. “Often it was misinformation, old wives’ tales, guesswork; mothers were urged to buy products which made things worse.

“We need good research on issues that are specific to female health and female reproduction. Some areas have barely been touched upon. Women’s pain symptoms get dismissed, for instance.”

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Munzer said many study participants rejected the concept of gender identity. “It suggests that being a woman is somehow connected to sex stereotypes. A lot of women view this as regressive.”

Maggie Kirkman, a women’s health expert who did not contribute to the article, agreed that better data was needed. “Medical research needs to incorporate both sex and gender to ensure that we have moved on from the days of accepting the white male body as standard,” said Kirkman, a senior research fellow at Monash University.

But Kirkman said research would be devalued by a “refusal to accept the concept of gender identity or that anyone can be other than female or male. That is akin to middle-class white men refusing to accept the reality of racism – they haven’t experienced it; therefore it doesn’t exist.”

Robyn Norton, co-founder of the George Institute for Global Health, said sex and gender should not be used interchangeably. “They represent two different concepts,” said Norton, who helped establish the Centre for Sex and Gender Equity in Health and Medicine.

While there was considerable confusion around the two concepts, organisations including the Australian Bureau of Statistics, the National Health and Medical Research Council, the Association of Australian Medical Research Institutes and Britain’s National Institute for Health and Care Research had recently issued clarifying statements.

Norton said sex was key to research into biological influences on health, while gender should be the focus for studies into sociocultural issues. “Oftentimes those two interact and need to be considered at the same time.

“It’s a changing dynamic. When we started working in this space, our colleagues just talked about sex, but the language – and how we think about sex and gender – has changed over time. It will continue to change most likely, so the conversations need to be had.”

john.ross@timeshighereducation.com