I’m reading through papers, books and reports related to queerness, the environment, and occasionally other topics. As I read, I’m taking notes so I can refer back to my old readings and remember their key points more easily. Why not post my notes here, so you can all learn with me?

The bulk of each article will be a summary of the reading, and will then end with my thoughts. Square brackets throughout the summary indicate comments from me.

Citation: Tordoff, D. M., Minalga, B., Gross, B. B., Martin, A., Caracciolo, B., Barbee, L. A., Balkus, J. E., & Khosropour, C. M. (2022). Erasure and Health Equity Implications of Using Binary Male/Female Categories in Sexual Health Research and Human Immunodeficiency Virus/Sexually Transmitted Infection Surveillance: Recommendations for Transgender-Inclusive Data Collection and Reporting. Sexually transmitted diseases, 49(2), e45–e49. https://doi.org/10.1097/OLQ.0000000000001533

Introduction

• “However, a review of articles published by Sexually Transmitted Diseases in 2020, for example, yielded 121 papers (of 166 that included human participants) that only reported data by male/female categories and conflated sex assigned at birth with gender”
  • [That’s 73% of the studies!! Fuck off.]
• “In addition, core surveillance systems and large national data sources, … also continue to report data in this way.”
• A little over 1% of adults in the US identify as trans or non-binary. That number grows to 1.3% – 2.7% when looking at adolescents.
• “Trans and non-binary people are disproportionally burdened by poor health outcomes, including STIs and HIV, due to socio-structural factors rooted in stigma and discrimination.”
• “In addition, trans and non-binary people report significant barriers to health care, including harassment, refusal of care by health care providers, and difficulty obtaining specific and trans-affirming health information.”
• Some trans people, with other dimensions of oppression, have it worse than others.
  • Black and Indigenous transwomen are more likely to have HIV and more likely to have their issues compounded by structural racism, colonialism and misogyny on top of the transphobia.
• Intersex people, who may or may not identify as trans, face their own unique harms.
  • Frequently excluded from research, at the same time that…
  • …intersex infants often undergo invasive surgery, hormonal treatments and other social harms.
• Male/female sex categories “are a product of Western colonial thought.”
• Recommend peer-reviewed journals “adopt policies that require authors to report disaggregated data for trans and non-binary identities and to use precise and inclusive language.”
  • “In the absence of available and accurate data on gender identity, we recommend that journals require authors to explicitly acknowledge the limitations of their data.”
• “…call for researchers and public health practitioners to think critically about how cisnormative assumptions manifest in data collection and reporting.”

Erasure, Exclusion, and Misclassification

• Erasure “is one of the primary processes through which conscious and unconscious cisnormative bias produces systemic barriers to care for trans communities.”
  • In reporting and data collection, it manifests as exclusion or misclassification of trans and non-binary people.
• Institutional erasure occurs in a variety of different ways.
  • Lacking policies that accommodate trans people. This includes lacking the knowledge that such policies are even necessary. The following should all include trans and non-binary response options:
    • Medical forms / records.
    • Surveillance systems / surveys.
    • Research studies.
  • Erasure also occurs when researchers:
    • Exclude trans and non-binary identities from research studies, deliberately or not.
    • Do not meaningfully engage with trans communities and end up with small sample sizes as a result.
    • Fail to examine trans-specific experiences.
    • Aggregate data from trans and non-binary people due to small sample sizes. Even worse, when the data is aggregated with cis people.
  • Erasure in public health.
    • Lack of public health policies, guidelines and recommendations for trans and non-binary people.
    • Lack of trans-specific training for healthcare providers.
    • Lack of data cited as the reason for their failure to include trans and non-binary people in policies.
• “In this way, institutional erasure both produces and is reproduced by informational erasure, or a lack of “knowledge regarding trans people… and the assumption that such knowledge does not exist even when it may.””
  • Few surveys or surveillance systems “use validated trans-inclusive measures for ascertaining gender.”
  • Even when data is collected, it is often obfuscated when published or reported.
  • [So… information erasure is when we have the data, but do nothing with it?]
• Misclassification
  • Trans people may end up lumped in with their gender assigned at birth. Conversely, they may end up lumped in with their gender.
    • [How would we know?]
  • “The direction and degree of misclassification is dependent both on data collection methods and analytic choices made by the researcher.”
    • When participants are categorised according to their voice, only one third of trans patients are classified concordant to their gender.
      • [Who the FUCK is doing this and why???? I’ve been mistaken for a man over the phone my whole life.]
    • When participants are simply asked whether they’re male or female, they’re likely to select the response that is concordant with their gender.
    • In studies based on medical or insurance records, they will be classified based on whatever is on their birth and other identification records. This could reflect either their current gender, or that assigned at birth.
      • [And it would miss people like me; I am fine being called a woman, but when asked, I would say I’m genderfluid.]
• Conflating gender and sex assigned at birth means researchers would miss health disparities amongst trans and non-binary people. It also neglects socio-structural factors.
• “The absence of data on health outcomes, healthcare guidelines, and evidence-based treatment and interventions for trans and non-binary people has contributed to suboptimal or delayed sexual health care, such as lower rates of HIV/STI testing, pre-exposure prophylaxis (PrEP) uptake, antiretroviral therapy (ART) use, or cervical cancer screenings.”

Recommendations

• Collect data on trans and non-binary identities using validated and recommended methods.
  • “All studies, health care systems, and surveillance systems should collect data on transgender, non-binary, and intersex identities using a two-step question that separately ascertains a respondent’s current gender identity and sex assigned at birth.”
    • [Sample is provided in the link. The paper is open access, so go check it out if you’re so inclined.]
  • These questions have been validated and are in active use; article lists who is using them.
  • Include a range of gender options, as well as a write-in option. In some settings, you’ll want to include culturally relevant specific responses. Named ones were “third-gender, two-spirit, hijra, fa’afafine, and mahu.”
  • “Intersex identity may be best ascertained using a separate question since intersex individuals are often assigned a male or female sex at birth, underscoring the sociocultural construction of binary “sex” categories.”
  • Having a standardised method of collecting gender identity data allows for comparison between studies and meta-analyses.
  • “Importantly, qualitative studies demonstrate that these data collection approaches reflect community preferences for how to ask about gender identity, although emerging literature suggests that some trans and non-binary people prefer data collection method that do not seek to ascertain sex assigned at birth.”
    • [Notably, the second question respects that last point as people can decline to provide their sex assigned at birth.]

• Report disaggregated data
  • “Trans women, trans men and non-binary people are distinct and diverse populations.”
    • “They differ with respect to their identities, burdens of disease, barriers and facilitators of health care, and other socio-structural factors that impact their health and wellness.”
    • As a result, data should not be reported as a single group.
  • “…including descriptive statistics, measures of association, and incidence rates. In the case of small numbers, we recommend reporting the gender of all participants, regardless of cell size.”
  • Use trans-inclusive recruitment strategies and study designs that will give meaningful data for gender diverse people, even if the research is not trans-specific. This will help avoid small sample sizes.
• Acknowledge limitations of the data.
  • Much historical data uses a gender binary, making it impossible to report on trans and non-binary participants. These limitations in the data should be explicitly stated.
  • Authors should explicitly state any assumptions in their study.
    • A common one is that sex or gender refers to that assigned at birth, but as discussed above, they may have been misclassified.
  • Table 1 provides examples of how authors can overcome data limitations.
    • [The article is open source, so feel free to go take a look.]
• Use trans-inclusive language that does not conflate sex assigned at birth and gender.
  • Do not conflate gender with sex assigned at birth.
  • Do not just say “women” when referring to cisgender women; be more specific and add “cisgender”, too.
  • There are a number of academic and community-based resources that explain trans-inclusive language practices.
    • [The article cites 11 resources. It also provides a table with common inappropriate terms, alternatives to replace them with, and citations for each one.]
  • Note that terminology evolves over time.

• Engage with trans and non-binary communities.
  • “Concepts, definitions, and language used to talk about sex, gender, and transgender bodies and experiences are cultural, historical, and have varied over place and time, and are likely to continue to change.”
  • Lived experience must be included in every step of the process, starting with the initial design of the study. This ensures you capture information that is actually relevant to trans lives.
  • “In addition, due to the power imbalances common in trans health research and the intersecting institutional harms experienced by these populations, community engagement is also important when conducting secondary analyses of existing data.”
• “Trans-inclusive data collection and reporting will facilitate a stronger understanding of the health and wellbeing of trans and non-binary communities, as well as disparities within trans populations.”
• “To optimize the health and policy influence of scientific inquiry, research must account for the impact of social determinants of health, structural racism, and stigma on all LGBTQ+ populations—especially trans and non-binary people. A fundamental goal of public health is to identify, describe, and explain disparities, with the ultimate aim of eliminating health inequity. However, we will never achieve health equity without changing our institutions and research practices to ensure that trans and non-binary people are meaningfully and intentionally represented.”

My thoughts

I’m currently working on an essay on the exclusion of gender diverse people from government census’ and scientific research, and this paper is part of my research for that piece.

I loved the use of the word “meaningful” in the very first sentence. It’s so important for engagement to be genuine and not a box-checking exercise.

Yoooooo they referenced Leslie Feinberg when they mentioned the gender binary is a product of Western colonialism. Specifically, they referenced Transgender Warriors, which I have sitting in my room. After I finish Wounds of Passion by bell hooks, I’m gonna crack that open. You can get a glimpse of how Feinberg’s Stone Butch Blues affected me, here.

Oh my god the misclassification section was a shitshow. Lumping trans people in with cis people is completely unhelpful, and lumping them in with their sex assigned at birth is actively harmful. That would absolutely trigger people’s dysphoria if they found out.

The erasure section sounds a lot like what happened in the 2021 Australian census. They had one question that could be interpreted a number of ways and ended up with a variety of answers. Broadly, the responses included people’s gender identity, sexual orientation, or chromosomal differences. In the end, they didn’t end up using the data. Everyone who selected male or female in addition to non-binary ended up put into the binary as per their other selection, while everyone else was reclassified at random. You can read more about it in The Conversation.

A lack of data being cited as reason for a lack of inclusion in policies is infuriating, especially in this context. This entire paper is about how we’re excluded, and this line shows us a direct result of that. Like… we’re not going to be counted in research in a systemic way without these policies, but research institutions also won’t write the policies till they get more research. Team, YOU can make a difference in this. Fucking do it.