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Sex, gender identity and women’s health research and equality: An urgent need for clarity of language and accurate data collection
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.
Biomedical and social scientists are increasingly calling the biological sex into question, arguing that sex is a graded spectrum rather than a binary trait. Leading science journals have been adopting this relativist view, thereby opposing fundamental biological facts. While we fully endorse efforts to create a more inclusive environment for gender‐diverse people, this does not require denying biological sex. On the contrary, the rejection of biological sex seems to be based on a lack of knowledge about evolution and it champions species chauvinism, inasmuch as it imposes human identity notions on millions of other species. We argue that the biological definition of the sexes remains central to recognising the diversity of life. Humans with their unique combination of biological sex and gender are different from non‐human animals and plants in this respect. Denying the concept of biological sex, for whatever cause, ultimately erodes scientific progress and may open the flood gates to “alternative truths.” Leading science journals increasingly adopt a view considering sex as a graded spectrum rather than binary. Thereby, they confuse operational definitions of sex, sexual differentiation, and variable sex roles with biological sex, which simply distinguishes two reproductive strategies, a female one producing large gametes, and a male one producing small gametes.
Background
Menstrual health is essential for gender equality and achieving the sustainable development goals. Though currently lacking, understanding and addressing menstrual health and social related inequalities requires comparison of experiences between menstruators with and without disabilities.
Methods
We completed a mixed-methods population-based study of water, sanitation and hygiene, disability and menstrual health in TORBA and SANMA Provinces, Vanuatu. Methods included a census, nested case-control study, in-depth interviews (IDIs), focus group discussions (FGDs), PhotoVoice and structured observations. We undertook a population census of 11,000+ households and recruited 164 menstruators with and 169 without disabilities (aged 10-45) into a nested case-control study. 20 menstruators across both groups were selected for the qualitative component.
Findings
Menstruators with disabilities were five times (adjusted Odds Ratio [aOR] 5.5, 95% Confidence Interval 1.8 – 16.5) more likely to use different bathing facilities to others in the household, nearly twice as likely (1.8, 1.1 – 3.1) to miss social activities, and three times (3.0, 1.6 – 5.7) more likely to eat alone during menstruation. Menstrual restrictions were widespread for all, but collecting water and managing menstrual materials was harder for menstruators with disabilities, particularly those requiring caregivers’ support. These factors negatively impacted menstruators with disabilities’ comfort, safety and hygiene, yet they reported less interference of menstruation on participation.
Interpretation
Negative factors affecting all menstruators disproportionately impact those with disabilities, compounding existing inequalities. Menstruators with disabilities may have reported less interference because they are accustomed to greater participation restrictions than others.
Funding
Australian Government's Water for Women fund and public donations.
The 2021 Census of England and Wales was one of the first in the world to ascertain the gender identity of an entire population. This article argues that its results are implausible with regard to geography, language, education, ethnicity, and religion. The results contradict data on referrals to gender clinics and signatures on a pro-transgender petition. The results are also internally inconsistent when the various categories of gender identity are correlated across localities, and when compared with sexual orientation. The spurious results were produced by a flawed question, which originated with a transgender campaigning organization. The question evidently confused a substantial number of respondents who erroneously declared their gender identity to differ from their natal sex. Confusion is manifested in the overrepresentation of people lacking English proficiency in the most suspect gender categories. These findings demonstrate how a faulty question can distort our apprehension of the social world.
Background:
Recent calls-to-action have recommended the use of gender-inclusive language in the field of human lactation research and clinical care. However, little empirical evidence about parental acceptance and understanding of this new terminology exists.
Research aim:
To assess understanding and acceptance of an inclusive language revision of the Breastfeeding Attrition Prediction Tool (BAPT).
Methods:
This was a prospective qualitative study consisting of two phases, a survey followed by cognitive interview. Pregnant people (N = 16) were recruited from the Vermont Special Supplemental Nutrition Program for Women, Infants, and Children, which uses the BAPT as a standard of care. The study team revised the BAPT (e.g., changed terms like "breast milk" to "human milk"). Study participants completed the Revised BAPT and then participated in a cognitive interview by phone to assess their understanding and acceptance of revised, inclusive language.
Results:
Most inclusive language was well understood and accepted by participants. Proposed revisions to the survey to replace terms like "breastfeeding" with other terms like "chestfeeding" or "bodyfeeding" were more difficult for participants to understand and were not well accepted.
Conclusions:
While it is clear that language in human lactation research and clinical practice should be revised to be more gender inclusive, specific inclusive terms elicit different levels of understanding and acceptance. Inclusive language options should be tested with target populations and more research is needed in this area.
What is happening with sex-based data collection? Alice Sullivan addresses contemporary confusions and controversies
Audio Interview
Interview with Dr. Daphna Stroumsa on the limitations of classification systems in health care and their potential effects on patients. (10:36)Download
A 32-year-old transgender man, presenting with severe lower abdominal pain and hypertension, is classified as a man who hasn’t taken his blood-pressure medications. When examined several hours later, he’s found to be pregnant, but no fetal heartbeat can be detected.
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