Sex and Gender Identity: Data Collection and Language Considerations for Human Research Ethics Committees and Researchers

Abstract

Including women in research and collecting and disaggregating data on sex is an ethical imperative. However, increasingly gender identity is being prioritised over sex in data collection and language which has ethical implications. In this paper, the authors share their experiences as study participants; a health consumer advocate, patient research advisor, and lay researcher; and academic researchers of engaging with researchers, Human Research Ethics Committees (HRECs), university ethics offices, and editors and reviewers of journals regarding data collection and communication on sex and gender identity. We argue that HRECs, researchers, and publishers must carefully consider the implications of omitting data collection on sex, mandatory and universalising gender identity questions and use of desexed language. We also propose that reduced data collection and disaggregation by sex, universal imposition of gender identity, and use of desexed language in research is decreasing data quality, reducing the willingness of some to participate in research and is culturally imperialistic. Recommendations for HRECs are made and research needs in relation to sex and gender identity are outlined. Respect for women in the conduct of research requires their sex-related experiences and needs are considered and therefore that data on sex is appropriately collected and reported upon.

Full text

Accepted: 3 February 2025
© The Author(s) 2025
Karleen Gribble
k.gribble@westernsydney.edu.au
1 Sydney, NSW, Australia
2 Wollongong, NSW, Australia
3 Canberra, Australian Capital Territory, Australia
4 Little Heartbeats, Stockport, UK
5 Department of Biological Sciences, Simon Fraser University, British Columbia, Canada
6 School of Nursing and Midwifery, Western Sydney University, Parramatta, NSW, Australia
Sex and Gender Identity: Data Collection and Language
Considerations for Human Research Ethics Committees and
Researchers
MadeleineMunzer1· NicoleJameson2· ArianwenHarris3· CiaraCurran4·
NatalieDinsdale5· KarleenGribble6
Journal of Academic Ethics
https://doi.org/10.1007/s10805-025-09605-3
Abstract
Including women in research and collecting and disaggregating data on sex is an ethical
imperative. However, increasingly gender identity is being prioritised over sex in data
collection and language which has ethical implications. In this paper, the authors share
their experiences as study participants; a health consumer advocate, patient research advi-
sor, and lay researcher; and academic researchers of engaging with researchers, Human
Research Ethics Committees (HRECs), university ethics oces, and editors and reviewers
of journals regarding data collection and communication on sex and gender identity. We
argue that HRECs, researchers, and publishers must carefully consider the implications of
omitting data collection on sex, mandatory and universalising gender identity questions
and use of desexed language. We also propose that reduced data collection and disag-
gregation by sex, universal imposition of gender identity, and use of desexed language
in research is decreasing data quality, reducing the willingness of some to participate in
research and is culturally imperialistic. Recommendations for HRECs are made and re-
search needs in relation to sex and gender identity are outlined. Respect for women in the
conduct of research requires their sex-related experiences and needs are considered and
therefore that data on sex is appropriately collected and reported upon.
Keywords Desexed language · Ethics · Female data gap · Gender identity · Sex · Sexed
language
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M. Munzer et al.
Introduction
Human research ethics committees (HRECs) exist to ensure that studies involving people
are undertaken ethically. Since the 1990s, including women in research, and collecting and
disaggregating data on sex, has been accepted as an ethical imperative and a matter of
women’s human rights and equality (De Rosa, 2014; Heidari et al., 2016; Kaufman et al.,
2023). However, the increased cultural salience of the concept of gender identity and the
prioritisation of it as a category is seemingly diminishing data collection on sex (Sullivan,
2023). Alongside this change, language is being desexed with words that enable clear iden-
tication of women as a group, like ‘women’1 and ‘mothers’, replaced with other terms,
such as ‘menstruators’ or ‘birthing parents’ (Gribble et al., 2022). We contend that HRECs,
researchers, editors and publishers need to be aware of the ethical implications that accom-
pany these changes and respond appropriately.
We write this paper as women and mothers who have rsthand experience of reduced
data collection on sex and the desexing of language in research through our varied roles as:
study participants (MM, NJ, AH); a health consumer advocate, patient research advisor, and
lay researcher (CC); and academic researchers (KG, ND). Collectively, we have engaged
with researchers, HRECs, university ethics oces, and editors and reviewers of journals
regarding data collection and communication on sex and gender identity, and the language
used to refer to women. In this paper, we aim to highlight complexities and concerns regard-
ing sex and gender identity in research with the goal of promoting research quality, women’s
equality and human rights and respect for and dignity of research participants.
What are Sex and Gender Identity?
Sex and gender identity are distinctly dierent concepts. Sex is a reproductive category
across all multicellular animal species, dened by whether individuals produce or are on
a developmental pathway to produce small motile gametes (male) or large sessile gametes
(female) (Goymann et al., 2023; Hilton & Wright, 2023; Kodric-Brown & Brown, 1987).
In humans, the bodies and experiences of males and females are dierent in ways which
necessitate that both sexes are included across a wide variety of research areas and that
data is disaggregated by sex (Gribble et al., 2025). Some dierences between the sexes are
absolute; notably, women uniquely gestate and birth infants. Some are average dierences,
for example, in height, strength and response to medications (Stoet & Geary, 2022). Others
are average dierences which stem from absolute sex dierence, for example, that women
are overwhelmingly the primary caregivers of infants (Gribble et al., 2023). And nally,
some dierences are a result of societal expectations and sexism; for example, women may
face barriers obtaining nancial support for starting businesses due to a view that they are
less suited to doing so than men (Bullough et al., 2022). Each of these factors can and do
interact with one another.
Historically and to this day, women have been excluded from research for reasons related
to their physiological complexity, concern regarding protecting fetuses and infants from
harm, and a seeming sexist prioritisation of the concerns of men (Galea et al., 2020; Gomes
1 In this paper we use the terms ‘woman/women’ and ‘man/men’ in their sexed meaning to refer to adult
female people and adult male people respectively and similarly the term ‘mothers’ and ‘fathers’ to refer to
female and male parents respectively.
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Sex and Gender Identity: Data Collection and Language Considerations…
et al., 2017; Sperber, 2021). This has resulted in a ‘female data gap’ evident across the
breadth of human experience, and to the disadvantage of women worldwide (Criado-Perez,
2019; Heidari et al., 2016). Lack of such data can even be life threatening (e.g. Waitt, Grib-
ble et al., 2025). Hence, it is considered a matter of ethics and women’s rights that women
are properly included in research and that studies collect and disaggregate data on sex.
When the term ‘gender identity’ was rst used, it described a person’s knowledge of their
sex as male or female (Byrne, 2023). However, the meaning soon changed to delineate an
internal sense of oneself as living in the social role of a man or a woman (Money, 1994). In
this way, gender identity became enmeshed with the concept of ‘gender’ developed by femi-
nist philosophers to describe the social expectations of men and women (Mikkola, 2024).
Further evolution of the concept of gender identity has allowed for ‘non-binary’ gender
identities and the understanding that gender identity is not xed but can change over time
(Coleman et al., 2022). Contemporary denitions of gender identity are varied and tend to
be circular in nature but continue to explain gender identity in reference to sex stereotypes.
For example, the Australian Human Rights Commission describes gender identity as ‘the
gender-related identity, appearance or mannerisms or other gender-related characteris-
tics of a person’ (Australian Human Rights Commission, 2013). Thus, a gender identity
of ‘woman’ can be reasonably interpreted to include dressing or acting in a stereotyped
‘womanly manner.’
The idea that ‘social roles’, or conforming to feminine sex stereotypes, are in any way
connected to making someone a woman is viewed by many as regressive and objectionable,
including the authors of this paper. We therefore do not apply the concept of gender identity
to ourselves. However, for others, gender identity is important to their self-understanding.
Most notable in this group are individuals who report experiencing a discordance between
their sex and their sense of gender identity, a state described as being transgender (McKech-
nie et al., 2023; Wiepjes et al., 2018; Zhang et al., 2021). Some transgender people have an
aversion to their sex being recognised or referred to. Data collection on gender identity and
avoidance of data collection on sex or use of language that references sex has come, at least
partly, through advocacy for this group.
Methodological Approach
The authors came together to write this paper through their shared connection to the senior
author, KG. Given her publication record regularly receives private communications from
diverse people, including clinicians, policy makers, academics and study participants who
are concerned about the implications of prioritising gender identity over sex in data collec-
tion and language. A series of back-and-forth communications between KG and each of the
authors (MM, NJ, AH, CC, ND) led KG to propose a collaborative article where our experi-
ences and insights regarding data collection on sex and gender identity and language used
to refer to women could be articulated.
We employed an autoethnographic approach. Each author was guided by KG to reect
on and write about our experiences with data collection on sex and gender identity and
language used to refer to women, through the lens of our particular research role (study par-
ticipant, academic researcher, consumer advocate/patient research advisor/lay researcher).
We each included the subject and context of the research project, our particular contribution
to the project, and documented issues related to data collection on sex and gender identity,
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M. Munzer et al.
the use of sexed or desexed language and/or requests or pressure to alter language or study
questions. Where relevant, we also detailed from where (e.g. a journal editor) or whom (e.g.
an ethics ocer) the requests to ask particular questions or use certain kinds of language
originated. Finally, we documented our personal response and/or action to these data col-
lection and/or language issues as well as the nal outcome(s) that resulted from our various
inquiries or non-compliances. MM collated and organised these experiences and views into
a rst draft. These personal, reective, and fact-based accounts of data collection on sex and
gender identity and the language used to refer to women in research are provided below.
Given the common themes and shared experiences among the three authors who acted as
study participants (MM, NJ, AH), these accounts are shared in one section. To analyse our
personal accounts, we consider our experiences in the context of other published studies
and discuss important issues emerging from our collective evidence for patterns of unclear
language and inappropriate language or study question requests.
Experiences as Study Participants with Data Collection on Sex and Gender Identity
We three study participant coauthors (MM, NJ, AH) are women who are mother to ten
children between us ranging in age from 4 to 15 years. We are all motivated to participate in
research by a desire to see women’s experiences and needs inform health and social policy
and practice. Our awareness that this is important was heightened through our experience of
becoming mothers and realising how little of the information we received during pregnancy
and new motherhood was based on sound evidence (Little & Wickremsinhe, 2017). We have
each participated in multiple studies, including research requiring considerable commit-
ment. For example, NJ has participated in a longitudinal study of child development through
several waves over the course of 15 years.
However, in the past several years, we have been disturbed as studies have increas-
ingly not requested information about our sex, even when sex is critically important to the
research topic. Instead, we have been expected to nominate a gender identity without any
mechanism to inform researchers that the concept is not applicable to us. We have found it
is common for completion of the gender identity question to be mandatory, preventing us
from progressing further into the study. In many instances, we have also been asked to state
a gender identity on behalf of our young children.
As these experiences became more frequent, we began to contact researchers and, in
some cases, the relevant university ethics oce to discuss our concerns. When doing so, we
have raised the necessity of data collection on sex for the closure of the female data gap and
advocated that not collecting data on sex where it is relevant diminishes research quality,
is unethical, and constitutes a form of sexism against women. We have also pointed out the
non-universality of gender identity and explained to researchers that requiring participants
to indicate a gender identity is oensive and unethical, comparable to requiring the answer-
ing of question about religion without a ‘no religion’ option.
Responses from researchers and ethics oces have varied but a general lack of under-
standing of the importance of sex data and what gender identity is have typically been
evident. Some researchers have insisted that sex and gender identity are equivalent con-
cepts and categories even though this is demonstrably false. Others have dismissed concerns
about absence of sex data and focused solely on what they see as the relevance of gender
identity information. One author [NJ] explained to a researcher that she was not able to pro-
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Sex and Gender Identity: Data Collection and Language Considerations…
ceed in their study due to the requirement of stating a gender identity for her young children.
The researcher responded by instructing her to ‘select the response which represents your
children’s gender identity.’ Some researchers have not responded to our queries. One ethics
oce did not address concerns raised by an author [MM] about the omission of sex data at
all, but simply responded that the study was approved by the university HREC which ‘did
not raise any concerns about the questions.’ Finally, a number of researchers and ethics
ocers have not understood that an option of ‘prefer not to say’ to a gender identity question
does not allow us to communicate that gender identity is not applicable but rather implies
that we have a gender identity we are unwilling to share.
We are most concerned by responses that indicate data collection on gender identity
instead of sex comes from explicit university guidance. Two authors [MM and NJ], were
referred by dierent researchers responsible for two dierent studies at the same university
to an ocial university guide which stated ‘There is rarely any reason to ask someone’s sex.
This usually only applies in medical, legal and some sporting contexts…Most of the time
you want to capture gender information’ (Monash University). When MM questioned the
ethics oce about the suitability of this guidance, she was informed that the guidelines were
developed by the equity and diversity unit and not the ethics oce.
However, as a result of our communications, some researchers have made changes to
their studies. One researcher oered to disable the ‘forced response’ mode for the gender
identity question in an online survey so the participant could proceed without answering
this question. On another occasion, researchers agreed to add a sex question and to pro-
vide a gender identity option of ‘I do not have a gender identity.’ Changes like these have
allowed us to participate in research and to answer questions with accuracy. Further, these
changes also give us condence that researchers are committed to conducting ethical and
high-quality research.
Overall, the apparent shift from collecting data on sex to a predominant focus on gender
identity has left us frustrated and angry. It highlights a disconnect between our sexed experi-
ences as women and mothers and an ideological emphasis on gender identity. Increasingly,
we nd ourselves unwilling to participate in research and have simply abandoned study
surveys where our sex is not requested, or that require us to state a gender identity.
Experience as a Researcher with Data Collection on Sex and Gender Identity
KG is a researcher in maternal and child health with a focus on breastfeeding and infant
and young child feeding in emergencies. She sought ethics approval for a study on natural
disaster experiences of parents of infants and young children in Australia, in which the study
survey asked for the sex of study participants but not their gender identity. After review by
her institution’s HREC, KG was provided with a university guidance document advising
that ‘for studies that are not explicitly about sex/gender only gender is asked’ and which
implied that data on sex was needed only for medical research. She was advised in HREC
feedback that not asking a question on gender identity might ‘alienate some gender diverse
participants.’ In her rst draft of the study survey, KG had included a question about gender
identity but had removed it as she could not apprehend that any data collected could be
relevant to the study. She did not consider it ethically justiable to include a question col-
lecting data that would not be used. In her response to the request, KG informed the HREC
why no question on gender identity has been included but indicated willingness to add a
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M. Munzer et al.
gender identity question if the committee remained of the view that this was necessary.
However, KG requested to deviate from university guidance that gender identity questions
be framed in a way that assumes all study participants applied the concept of gender identity
to themselves. She requested instead to add an answer option of ‘I do not have a gender
identity.’ Regarding the sex question, the HREC had requested that if a sex question were
to be included that ‘intersex’ be added as a third sex option. KG advocated for retaining the
question on sex with binary ‘male’ ‘female’ answer options explaining that sex data was
relevant given the sexed nature of pregnancy and infant care (Gribble et al., 2023) and that
intersex was not a third sex. This research project had a tight time frame for completion and
so there was concern that prioritising data quality and not making the changes as requested
by the HREC could delay ethics approval. Fortunately, the HREC approved the application
in a timely manner with it noted that the response to HREC comments on sex and gender
identity demonstrated ‘great consideration to these issues.’ Examination of the answers to
the sex and gender identity questions in this study did not indicate any transgender study
participants - but a number of individuals nominated that they did not have a gender identity.
KG has had senior colleagues from a number of universities contact her to ask for advice
on how to word survey questions to collect data on sex and gender identity. It seems com-
mon for researchers to be confused about the dierence between sex and gender identity
and how to collect accurate data on these variables. They may attempt to collect data on sex
and gender identity using a single question resulting in accurate data on neither variable.
For example, they may ask participants what their sex is but include ‘non-binary’ as an
option not realising that in doing so, they are mixing sex and gender identity. This question
construction was even applied in the 2021 Australian census resulting in, what was later rec-
ognised as, meaningless data (Australian Bureau of Statistics, 2022). Others feel that they
must follow HREC suggestions or guidance on data collection on sex and gender identity
even when data collection on sex is inappropriately discouraged, includes intersex as a third
sex or universalises gender identity to all.
Desexed Language to Refer to Women
The sexed words ‘women’ and ‘mothers’ are increasingly being replaced in research and
other contexts with alternative terms that either make sex invisible (e.g. ‘people’, ‘par-
ents,’ or ‘families’), reference body parts (e.g. ‘cervix owners’) or allude to physiologi-
cal processes (e.g. ‘birthing bodies’) (Gribble et al., 2022). The word ‘breastfeeding’ may
be replaced with terms like ‘chestfeeding’ or ‘bodyfeeding’ (Gribble et al., 2022). Using
desexed language risks inappropriate inclusion as well as confusion, inaccuracy and exclu-
sion, particularly in health communications for women with low literacy, low health literacy
or low language prociency (Gribble et al., 2022). Desexed terms like ‘person with a cer-
vix,’ ‘vagina owner’ and ‘menstruator’ disperse women’s reproductive system into compo-
nent parts so obscuring the coherence of women’s bodies and reproduction and collective
belonging to the female sex class. Desexed language risks the dehumanisation of women
(Bartick, 2024) and obscuring women’s experiences, needs, and human rights (Gribble et
al., 2022; Jameson, 2021; Munzer, 2021).
The extent to which desexed language adversely impacts or is rejected by women is
unknown as it has scarcely been researched. There has been one small study on this subject
in the US (Kinney et al., 2023) and another, larger study, in Uganda (Nakijoba et al., 2025).
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Sex and Gender Identity: Data Collection and Language Considerations…
The US study (16 participants) found that replacing the sexed term ‘mother’ with ‘parent’
in a question resulted in some women misunderstanding what was being asked (Kinney et
al., 2023). This same study also considered the acceptability of replacing ‘breastfeeding’
with ‘chestfeeding’ and ‘bodyfeeding’ and found high levels of rejection by women. One
woman had experienced rape and said that bodyfeeding ‘conjures something I don’t want
to think about.’
The Ugandan study considered the understandability and cultural acceptability of terms
including ‘person with a uterus’, ‘person who menstruates’, ‘birthing parent’, and ‘chest
feeding’ in 19 focus group discussions, involving 146 men, women and youth in six lan-
guages and in ve of locations (Nakijoba et al., 2025). This research identied that some
desexed terms were confusing; for example, ‘birthing parent’ was understood by some to
refer to both mothers and fathers. Desexed language overall was described as ‘disrespect-
ful,’ ‘obscene’ and ‘shameful’ (Nakijoba et al., 2025).
Dehumanising terminology to refer to women should not be used. However, some
researchers are using dehumanising desexed language in their publications, including
seemingly without study participant agreement and are being permitted to do so by journal
reviewers and editors. For example, a paper which examined the menstruation experiences
of women with disabilities in Vanuatu referred to study participants as ‘menstruators’ (Wil-
bur et al., 2021). The stigma associated with menstruation was described in some detail
in this paper but there is no indication that study participants consented to be described in
terms of this stigmatised physiological process. Use of such dehumanising terms in publica-
tions is increasing: Google Scholar shows just 18 publications including the term ‘menstrua-
tors’ in 2013 but 426 in 2024, a 24 fold increase.
Experiences as Researchers with Pressure to Desex Language
It is evident that in some instances researchers are experiencing pressure from HRECs,
reviewers, and editors to use desexed language. ND is an evolutionary biologist who con-
siders how evolutionary dynamics shape features of sexuality, reproduction and health and
disease in humans. She submitted an ethics application for a proposed study on female
reproductive anatomy and its correlates and experienced repeated requests for changes by
the HREC related to the use of the terms ‘female’ and ‘women’ in study materials. Over
three rounds of review, multiple adjustments to language were made at the request of the
HREC as ND sought to retain sexed language and explain why. This culminated with her
being directed to ‘remove all references to women’ in all study documents in the third round
of review, even in documents that would not be seen by study participants. ND rejected this
request, and her ethics application was nonetheless nally approved, albeit with signicant
delay for a minimal risk project.
ND also submitted for publication a paper on the cognition of women with polycys-
tic ovaries or endometriosis and was requested by a reviewer that the word ‘woman’ be
replaced throughout with the nonsensical phrase ‘people with female-identied reproductive
organs’ (Dinsdale, 2023). She also refused to do that and instead added denitions stating
that ‘this article uses the terms ‘woman,’ ‘women,’ and ‘female’ to refer to individuals born
biologically female.’ The paper was then accepted for publication (Dinsdale, 2023).
CC is a woman who experienced preterm prelabour rupture of membranes (PPROM)
and the subsequent death of her unborn baby. She set up an organisation called Little Heart-
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M. Munzer et al.
beats (Little Heartbeats) and as a volunteer advocates for and supports women who have
experienced PPROM and also advocates for research into PPROM. CC has acted in the
role of research advisor to patient and public involvement (PPI) groups and has been a lay
researcher for a number of studies of PPROM. In an address to a committee of the House
of Lords in the United Kingdom, CC emphasised the particularly negative impact of dis-
appearance of terms like ‘women’ and ‘mothers’ on women like herself who had experi-
enced pregnancy loss, infant death or premature birth. She connected desexed terminology
to the widespread dehumanisation of women during pregnancy and childbirth (Keedle et
al., 2022) and shared her own perception as a woman experiencing pregnancy complica-
tions of being seen as ‘a body on the bed’ rather than as a ‘woman who needed healthcare’
(Ely, 2023). Research with pregnant and birthing women and women with gynaecological
complications repeatedly echoes these experiences of being ‘just a body’ or ‘body parts’
and being dehumanised in health care settings (Gribble et al., 2022; Halvorsen et al., 2013;
Keedle et al., 2022; Toye et al., 2023; Walburg et al., 2014). This underlines the importance
of using respectful language in the context of women’s reproductive health.
CC has experienced both HRECs and a journal suggesting or requesting replacement of
‘women’ with desexed language. As a member of a PPI group, CC was asked by the lead
researcher for her advice on language use as the HREC suggested ‘that the [chief inves-
tigator] checks with the PPI group as to whether it might be more inclusive to say ‘preg-
nant women and people who are pregnant.’’ To the apparent relief of the researcher, CC
explained the possible impacts of desexed language on women and their rights which was
communicated to the HREC and sexed language was permitted in the study.
A paper on PPROM for which CC was a coauthor was accepted for publication in the
British Medical Journal but all uses of ‘women’ in the paper were replaced by editorial
sta with ‘people’ at the proong stage. The unacceptability of this was communicated to
a technical editor who did not appear to be aware of the diculties that desexed language
can pose and noted that ‘inclusive language’ policy is ‘continually evolving’ at the journal.
Nonetheless, the editor was amenable to reverting the language and addition of an inclusiv-
ity statement saying, ‘This paper uses the term ‘woman’ and includes all female people,
including those who do not see themselves as women’.
It appears that requests from reviewers, editors and others to use desexed language are
not uncommon. KG has also experienced several requests to use desexed terminology to
refer to pregnant women and breastfeeding mothers. In most instances, a simple inclusion
of a denition to make it clear that the terms ‘women’ and ‘mothers’ were being used in their
sexed meaning was sucient to enable publication. However, in one instance, the pressure
at the last minute to change the language was so intense and persistent that the authors
needed to threaten to withdraw the publication before it was agreed that sexed language
could be retained. In this case, the authors, who were from many countries, were united in
considering the request as inappropriate, deeming that such a request would undermine the
clarity of communication regarding women’s needs and would represent an inappropriate
imposition of American/Western ideas in a paper intended for a global audience. Unfortu-
nately, in another case, an editor replaced the term ‘mothers’ with ‘breastfeeding parents’
in a paper of KG’s during proong which was regrettably not identied and so this desexed
language, and the error it introduced, remains (Gribble et al., 2020).
Most recently, KG was a coauthor of a letter to the editor of the Lancet Global Health
on the need for guidance on mpox vaccination for breastfeeding mothers in the Democratic
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Sex and Gender Identity: Data Collection and Language Considerations…
Republic of the Congo (DRC) (Ververs et al., 2024). On the proofed pdf, an editor requested
that ‘chestfeeding’ be inserted in several places, saying, ‘Could we add “and chestfeed-
ing parents”, to ensure we include all those feeding human milk.’ There are unlikely to be
individuals who describe themselves as ‘chestfeeding parents’ in the DRC which suggests
an ideological underpinning of this request not connected to the women central to the letter.
Nonetheless, the editor acceded to the response that these changes not be made. However,
the replacement of two usages of ‘women’ for ‘people’ in this letter were also made by the
editor at proong, not highlighted for the authors, were missed and are in the published
letter.
Nakijoba et al. (2025) noted their motivation to consider the acceptability of desexed
language in Uganda being in response to ‘pressure from journals and some partner orga-
nizations’ to use desexed terminology. Their research concluded that ‘the shift towards de-
sexed language may be seen as an imposition of foreign values rather than a progressive
step toward inclusivity.’ The editor in chief of The Lancet Group, has written about the
importance of decolonisation stating, ‘Decolonisation seems an urgent obligation if those
who advocate for equity wish to be taken seriously and retain even a vestige of moral con-
science’ (Horton, 2021). However, there is a clear inconsistency between this intention and
the practice of journals as examples of desexed language requests and requirements pro-
vided in this paper illustrate.
Discussion
There are a number of implications of reduced data collection and disaggregation by sex,
universal imposition of gender identity, and use of desexed language in research.
First, quality of data is compromised and data necessary to understand women’s needs
and experiences is missing and so advocacy for women’s equality impeded. For example,
recent research on pregnancy and parenting related workplace discrimination in Australia
did not collect sex data and so could not disaggregate by sex (Potter et al., 2023). This meant
that basic information relevant to women’s experiences and human rights, such as length
of parental leave available or taken by mothers and whether they wanted more leave was
unavailable. In another example, the Australian Department of Health conducted a survey
of Australia’s medical and health research workforce that did not include a question on the
sex of researchers. When the Department of Health was advised that motherhood has a
signicant impact on women’s participation in the workforce and so data collection on sex
was important, they responded that they asked about caregiving responsibilities implying
that this inactivated the concern. They were seemingly unaware of research showing for
example that academic fatherhood does not have a career impact whereas motherhood does
(Lutter & Schröder, 2020); that is, sex matters and so sex data should have been collected.
Lack of data on sex or compromised data quality also may prevent meaningful con-
clusions being drawn. For example, in 2021, it was reported that in the United Kingdom
there had been an 84% increase in the number of women recorded as sexually abusing
children (Fair Play for Women, 2021). However, it was not possible to determine if there
truly had been an increase in female perpetrators of child sexual abuse because, amongst
other reasons, police and court data collection had shifted from recording the biological
sex of perpetrators to, in some instances, recording their gender identity or self-reported
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M. Munzer et al.
or legal sex (Fair Play for Women, 2021). It is entirely possible that there had been no
increase in female perpetration of child sexual abuse but that the increase was simply a
result of a mis-recording of a small percentage of male perpetrators as female. In another
example a Canadian study on ‘pregnancy involvement’ and the mental and sexual health of
young people who identied as transgender did not report data disaggregated by sex even
though getting someone pregnant is very dierent from getting pregnant, severely limiting
the usefulness of the research (Veale et al., 2016). A study on mpox infection in ‘women and
non-binary’ individuals provides an illustration of how sex data is important for everyone,
including those who identify as transgender. This research included people who were male
with a woman gender identity, as well as females irrespective of gender identity and found
vastly dierent epidemiological and clinical characteristics between the sexes (Thornhill et
al., 2022). Had sex data not been collected it would not have been possible to delineate these
important ndings relevant to health policy and health care provision.
Second, potential study participants may reject participation in research, believing
that not collecting sex data, requiring participants to agree they have a gender identity,
and using desexed language in study materials or publications is unethical and indicates
lack of knowledge, skill or respect by researchers. The extent to which such self-exclu-
sion occurs is unknown. However, each of the three study participant authors of this paper
have self-excluded from research for these reasons. An online blog shares another woman’s
experience of writing to researchers stating her unwillingness to participate in their study
because it did not ask her what her sex was (Hill, 2023). Regarding language use, research
on desexed language acceptance reported women saying that if they were presented with
terms like ‘chestfeeding’ or ‘bodyfeeding’ in a survey they, ‘wouldn’t have taken the sur-
vey… would have rolled my eyes and just exited out of it’ and ‘If I saw that on a piece of
paper, that would make me want to throw that paper away.’ KG is aware of a researcher
who used desexed language in study materials at the request of an HREC but experienced
poor recruitment and complaints about the language used. The problem was such that the
researcher requested and obtained an amendment to their ethics approval to reinstate sexed
language after which recruitment proceeded acceptably.
Terminology rooted in a gender identity framework may foster lack of trust in scientists
and scientic institutions. For example, The Lancet has recently informed authors that they
should use the term ‘sex assigned at birth’ in papers submitted to the journal (The Lancet,
2024). This phraseology can be reasonably recognised as absurd and unscientic, particu-
larly by women who have had the sex of their infants identied by ultrasound well before
their birth. We also suggest it is oensive to use this term which on its face claims that a
choice is made to condemn half of newborns to the sexism imposed on girls and women
within societies, including infanticide in India or exclusion from education in Afghanistan
as examples. The use of ‘sex assigned at birth’ in research may well result in potential study
participants declining participation and decrease researcher and journal credibility.
Finally, there are serious ethical considerations related to requesting or requiring research-
ers or study participants from diverse cultural and belief backgrounds to apply ideas related
to gender identity to others or themselves. The American origin of gender identity and
associated language is unmistakable. This can be visualised via use of the internet search
analysis tool Google Trends® which shows the geographic spread over time of terms like
‘assigned sex’, ‘menstruators,’ ‘birthing people’, and ‘chest feeding’ from the United States
of America (US) to other countries. Clearly the cultural power of the US and other Western
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Sex and Gender Identity: Data Collection and Language Considerations…
nations is playing a role in this spread. It should be appreciated that researchers from low-
and middle-income countries, particularly those that are non-Western and of non-English
speaking backgrounds, may face enhanced diculties in pushing back against inappropriate
requests to desex language from funders and journals. It should be considered a type of cul-
tural imperialism and abuse of power for institutions like funders, Western-based research
partners, HRECs or journals to impose requirements related to gender identity irrespective
of the research context or backgrounds and beliefs of researchers and study participants.
Recommendations for HRECs
HRECs have a critical role to play in ensuring that women do not continue to be disad-
vantaged as a result of their inadequate inclusion in research and lack of collection and
disaggregation of data on sex. We argue that HRECs have a duty to ensure that sex data is
systematically collected and accurately represented in studies. Therefore, HRECs should
provide explicit guidance on when sex data should be gathered. We propose this should be
in any context where physiological dierences between the sexes or social expectations of
the sexes are relevant. This is particularly important in situations involving women’s repro-
ductive capacities, such as pregnancy, childbirth, breastfeeding, or infant care (Gribble et
al., 2023b), as well as in contexts of workplace discrimination and career advancement. The
responsibility for providing guidance to researchers on data collection on sex rests squarely
with HRECs and ethics oces and should not be deferred to other university units. HRECs
need to be aware that recent academic eorts to portray the sex binary as ‘more complex’ or
‘blurred’ (Ainsworth, 2015), and to present sex as part of a spectrum, is a confusion of sex
as a reproductive category and sex characteristics and undermines eorts towards closure of
the female data gap. It is crucial to maintain a clear distinction between sex, sex characteris-
tics and gender identity to ensure that research inclusivity accurately reects the experiences
and needs of women.
Furthermore, HRECs should ensure that questions regarding gender identity include
options that allow respondents to indicate that the characteristic does not apply to them,
such as ‘not applicable’ or ‘I do not have a gender identity.’ This approach respects the
diverse backgrounds, cultural beliefs, experiences and characteristics of study participants
and acknowledges that not everyone subscribes to the concept of a gender identity. Doing
this also assists in avoiding cultural imperialism and maintaining cultural humility and
respect.
HRECs must also advocate against using dehumanising language in research materials,
including participant information, surveys, and dissemination channels (such as publica-
tions and conference presentations). Ensuring respectful and accurate language is essential
to maintaining the dignity, integrity and willingness of research participants. It should be
made clear to researchers that desexed language should not be used in publications unless
such language was used in study materials with study participants. This was also recom-
mended by Nakijoba et al. (2025). Additionally, academic journals need to provide clear
guidance to reviewers and editors regarding appropriate language use. This guidance should
emphasise the importance of using respectful and precise terms to avoid perpetuating confu-
sion misrepresentation and disrespect.
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M. Munzer et al.
Research Needs
We maintain that the imperative to include women in research, including pregnant and
breastfeeding women, and to collect data on and disaggregate data by sex remains and
should be prioritised. Women remain underrepresented in research and they and their chil-
dren suer as a result of this. It is still the case that most medications have not been properly
researched for pregnant and breastfeeding women and the impact of this can be severe. For
example, despite advocacy from the Coalition for Advancement of Maternal Therapeutics
(Coalition for Advancement of Maternal Therapeutics, 2020), COVID-19 vaccine trials did
not include pregnant or breastfeeding women (Van Spall, 2021). The result was that hun-
dreds of millions of pregnant and breastfeeding women were required to make decisions on
receiving a COVID-19 vaccine in the absence of research showing safety. In some contexts,
women were forced (at least for a time) out of their employment or had to choose between
breastfeeding and their employment as government policy meant they could not be vacci-
nated in line with work requirements while pregnant or breastfeeding (Hare & Womersley,
2021). Women’s health and medical conditions remain under-researched (Galea & Parekh,
2023; Smith, 2023) and women’s contributions to economies and societies under or unmea-
sured and not counted (Gribble et al., 2023b).
We argue there is a pressing need for research to be undertaken to understand how study
participants comprehend questions about gender identity. Very little is known about what
members of the public understand gender identity to be and what information they are
providing when asked questions about gender identity. The longstanding use of ‘gender’
as a synonym for ‘sex’ likely results in some study participants believing they are being
requested to state their sex when asked what their gender or gender identity is. Some par-
ticipants likely deduce the meaning of gender identity questions from the response options
rather than from a clear understanding of the concept of gender identity. Using the terms
‘male’ and ‘female’ to denote gender identities is likely to encourage confusion of gender
identity with sex (Balarajan et al., 2011) but the extent to which this occurs is unknown.
The 2021 census of England and Wales provides a dramatic example of how confusion
regarding gender identity questions can provide demonstrably unreliable data. This census
data indicated that those with the poorest English language skills were those most likely to
be transgender suggesting that the gender identity question was confusing (Biggs, 2024).
The Oce for Statistics Regulation recently recognised the untrustworthiness of this gender
identity data and downgraded it, this was the rst time this had occurred since the census
began in 1801 (Barnes, 2024). The impact of gender identity uidity (Coleman et al., 2022)
on data collection need to be understood, as should the implications of replacing a xed
characteristic like sex as a biological variable with one that may change over the lifespan.
Finally, it is unknown how common it is for individuals to not apply the concept of
gender identity to themselves, or what the impact is of imposing gender identity beliefs
upon people who eschew the concept. A group for whom there should be particular con-
sideration are people who used to apply the concept of gender identity and understood
themselves to be transgender but who do so no longer, so called desisters or detransitioners
(Expósito-Campos, 2021). Detransitioners in particular may see the concept of gender iden-
tity as something that has harmed them and be especially aversive to assumptions regarding
gender identity and a requirement to state a gender identity (Gribble, Bewley et al., 2023).
The experiences of detransitioners highlight the complexity and potential pitfalls of impos-
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Sex and Gender Identity: Data Collection and Language Considerations…
ing rigid gender-identity frameworks in research, underscoring the need for exibility and
sensitivity.
Conclusion
The increasing prioritisation of gender identity over sex in data collection and language has
ethical implications that HRECs, researchers, editors and publishers should understand and
take heed of. HRECs have a responsibility to provide guidance to researchers that maintains
the necessity to collect data on and disaggregate by sex whenever sex may be relevant and to
ensure that personal application of gender identity is not inappropriately imposed on study
participants. HRECs, editors and publishers must also ensure that dehumanising language to
refer to women is avoided and that researchers are not pressured or required to use desexed
terminology in study materials or publications. It is an ethical imperative for women to be
respected in the conduct of research; this requires that their sex-related experiences and
needs are considered and therefore that data on sex is appropriately collected and reported
upon.
Funding Open Access funding enabled and organized by CAUL and its Member Institutions
Declarations
Competing Interests The authors have no competing interests relevant to the content of this paper to declare.
No funding was received to assist with the preparation of this manuscript.
Open Access This article is licensed under a Creative Commons Attribution 4.0 International License,
which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as
you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons
licence, and indicate if changes were made. The images or other third party material in this article are
included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material.
If material is not included in the article’s Creative Commons licence and your intended use is not permitted
by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the
copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
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