Introduction by Croakey: Researchers are urged to consider more than 100 questions about sex, gender, variations of sex characteristics and sexual orientation when setting research questions and designing, conducting, analysing, reporting, disseminating and implementing their research.
The questions are put forward in a new statement published jointly by the National Health and Medical Research Council (NHMRC) and the Department of Health and Aged Care (as part of its responsibility for implementing the Medical Research Future Fund). It is titled ‘Statement on Sex, Gender, Variations of Sex Characteristics and Sexual Orientation in Health and Medical Research’.
The statement aims to ensure that health and medical research produces an evidence base that is relevant to everyone, acknowledging the historical under-representation of sex, gender, variations of sex characteristics and sexual orientation across research fields and topics.
It also aims to promote effective, sensitive and safe involvement of people with lived experience in all stages of research projects.
“It is important to acknowledge that inclusion and effective partnerships have not always been the norm,” says the statement.
“Historically, the limited consideration of sex, gender, variations of sex characteristics and sexual orientation in health and medical research has led to many population groups being excluded or discouraged from research participation, or made invisible in research findings, or has led to inappropriate and/or harmful healthcare, lack of consideration in health and public policy, and/or continued discrimination.”
Below, researchers from the George Institute for Global Health and Deakin University argue that the statement is only the beginning of a process of addressing longstanding inequities, and that measures will be needed to enforce the policy and evaluate its application.
“Universities, medical research institutes, ethics approval boards, Australian medical journals and health services all have a role to play by aligning their practices with the NHMRC statement and auditing their implementation,” they say.
Their article was first published at The Conversation under the headline, ‘Australia has new health research gender standards – and centuries of inequity to fix’.
Bronwyn Graham, Rachel Huxley and Severine Lamon write:
The Australian National Health and Medical Research Council (NHMRC) has just released its much-anticipated landmark statement advocating for sex, gender, variations of sex characteristics and sexual orientation to be routinely considered in health and medical research.
This means the NHMRC is asking funding applicants to think about questions such as whether their research will include data from both males and females, whether the outcome measures are appropriate for different sex and gender groups, and how potential differences in these groups will be measured and reported.
Setting the standard this way has the potential to overhaul sex-and-gender-based biases and health disparities in medicine. But only if the next steps are implemented effectively.
Why sex, gender and sexual orientation matter
Although related, these terms have different meanings:
- sex means one’s biological characteristics and is also a legal status
- gender means one’s identity, expression, experiences and behaviours, and is a social construct, meaning it’s an idea created and shaped by people and their interactions
- sexual orientation refers to a person’s sexual identity and attraction, such as gay, bisexual, heterosexual or asexual.
These aspects of a person fundamentally influence their health. Differences related to sex, gender and sexual orientation have impacts on disease susceptibility, diagnosis, severity, prognosis and management. These impacts apply to a wide range of acute and chronic conditions.
Sex, gender and sexual orientation also influence people’s experience of health services and how health professionals interact with them.
What about for research?
For centuries, health and medical researchers have not routinely considered sex, gender or sexual orientation in the design, analysis or interpretation of their research.
Most medical research in non-human animals (also called “pre-clinical research”, where drug treatments are developed and tested for safety and effectiveness) is conducted only in males.
In human clinical trials, participation rates are often higher among males than females. These trials frequently exclude women who are pregnant, lactating or “of reproductive age”.
The reasons for this sex imbalance range from safety concerns (wanting to avoid harming a foetus) to the erroneous belief that females are the more “difficult” sex to study because of fluctuating sex hormones.
The outcomes of research are rarely reported or analysed separately according to specific sex and gender groups. This prevents detection of potential sex and gender differences in treatment safety and effectiveness.
The failure to adequately consider sex, gender and sexual orientation in health and medical research has led to well-documented disparities in healthcare outcomes.
Negative side effects from medication are more common in women, but are more often fatal in men. Due to sex differences in clinical symptoms, stroke is more frequently misdiagnosed in women than in men, delaying life-saving treatment.
This affects everyone, particularly marginalised groups including women and girls, people born with variations of sex characteristics (intersex), trans and non-binary people, and people with diverse sexual orientations.
But not considering sex, gender and sexual orientation also affects the health of cisgender men and boys. Traditional masculine gender norms can dissuade help-seeking and access to clinical care for conditions including cancer and mental illness.
Why does Australia need an NHMRC statement?
Over the past two decades, the main health and medical research funding bodies in Europe and North America have introduced policies and mandates with the aim of correcting sex-and-gender-based bias in research practices.
These policies typically require applicants for research funding to demonstrate how they have adequately considered sex and gender (where relevant) in their study design and analysis.
Australia has lagged in establishing sex and gender policy – until now. The NHMRC statement is an important first step in bringing Australia into line with leading international research standards.
As the NHMRC is one of the major funders of Australian health and medical research, this signals Australia is at last wanting to overturn decades of entrenched sex and gender disparities in taxpayer-funded research.
The statement is a commitment to encourage publicly funded health and medical research to consider sex, gender, variations of sex characteristics and sexual orientation at all stages of research. This stretches from design through to implementation.
The statement refers to the Australian Bureau of Statistics to guide definitions of sex and gender. These change over time and can differ according to culture, including among Aboriginal and Torres Strait Islander people.
What more needs to be done?
So Australian researchers now have a strong foundation for more inclusive and equitable research practices.
But there is not yet a mechanism in the funding review process to evaluate how well researchers have considered these variables.
Without enforcing its policy and evaluating its application, the NHMRC has no means to keep track of improvements, or lack thereof, in sex and gender equity in health and medicine.
Universities, medical research institutes, ethics approval boards, Australian medical journals and health services all have a role to play by aligning their practices with the NHMRC statement and auditing their implementation. Incentives such as sex-and-gender-relevant training and priority funding might help.
The NHMRC’s gender equity strategy, which seeks to improve gender diversity among researchers who are awarded funding, may also help.
There is no silver bullet to end all sex-and-gender-related inequities in health.
But the statement could provide the foundation for cascading changes across different sectors to address gaps in our knowledge about the health of underserved sex and gender groups.
Author details
Bronwyn Graham is the Director of the Centre for Sex and Gender Equity in Health and Medicine at the George Institute for Global Health, and a Professor in the School of Psychology at UNSW Sydney. She participated in a workshop to inform the drafting of the NHMRC statement as the first step of a broader community consultation process.
Rachel Huxley is Deakin Distinguished Professor and Executive Dean, Faculty of Health, Deakin University. She receives funding from the NHMRC and is an Honorary Professorial Fellow, The George Institute, UNSW.
Severine Lamon is Associate Professor, Nutrition and Exercise Physiology, Deakin University and receives funding from the ARC. She is the Co-Director of the Centre for Sex and Gender Equity in Health and Medicine (Victoria), and participated in a workshop to inform the drafting of the NHMRC statement as the first step of a broader community consultation process.
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