Pride in Research: The legacy of erasure and the future of LGBT+ inclusive trials

Credit: Illustration by Francesco Bongiorni

Note: this author uses the term ‘queer’ to refer to both: people who did not have terms like ‘LGBT+’ during their lives; and as an inclusive umbrella term for LGBTQIA+ people. The author recognises that not everybody is comfortable with that word and that this discomfort is valid. Further definitions are included as links throughout the article.

Queering the clinic

I was doing my GCSEs when Section 28 was repealed. I don’t remember it happening because I didn’t know what it was. I was already ‘out,’ and it hadn’t really been a big deal. I railed against the existence of anything made specifically for queer people, insisting that we were just like anyone else, and I would rather have been caught dead than at Gay Pride (as it was called then). Needless to say, this is no longer the case.

I grew up in the town Alan Turing called home. In school we learned about his contribution to modern-day computing and to winning WWII, but nothing about his treatment as a gay man, his prosecution in 1952, his chemical castration or his resulting suicide. The legacy of Section 28 was that no teacher could risk presenting queerness as an equally valid life choice to the status quo and so any possible mention of an ‘alternative lifestyle’ was carefully expunged. The result is that many of our historical and cultural icons have had their queer identities erased, including many STEM subject innovators like these ground-breaking neurobiologists, public health pioneers and bioprinting trailblazers.

As far as I knew, nobody like me was successful. When people asked me what I wanted to be when I grew up, I had no idea, because I couldn’t see what life could be like for me. I used to tell people I was going to cure cancer, because it elicited an exclusively positive response and hid the tension I felt for not knowing. I had no idea of the legacy of queer scientists, researchers, and medics that I had inherited until much, much later.

In a bizarre and ironic twist of fate, I am now working in a dedicated cancer prevention clinical trials unit. It will surprise no one to know that inclusivity in research is deeply important to me, as it should be to everyone.

Much like other marginalised communities, there is a historical mistrust of health institutions in the queer community, as a result of the botched handling of the AIDS crisis in the 80s & recent backtracking on the Gender Recognition Act. Stonewall found that 14% of LGB people, and 37% of transgender people, have avoided accessing healthcare services due to fear of being discriminated against. Results from the National LGBT Survey found the same. For trans people from ethnic minorities, the figures are even worse as they often have institutional racism to deal with alongside transphobia. If people are avoiding seeking advice or treatment, the chance that a cancer will be detected early drops dramatically, and the later cancer is diagnosed the lower the chance of survival. The link between marginalised communities and poorer than average health outcomes is stark and demands our attention.

Say you work up the nerve to go for a cervical smear test, what if you don’t look like you have a cervix, or your medical notes list your gender as male but not transgender? What if you’re a survivor of sexual assault (as queer people have an increased chance of being)? What if you don’t have a permanent address (like disproportionate numbers of queer people)? And what if, like me and 37% of lesbian and bisexual women, you’ve incorrectly been told that you don’t need to be tested for HPV because of your sexuality?

Stewart O’Callaghan, founder of Live Through This (a cancer support and advocacy charity for the LGBTIQ+ community) stated, “Trans and non-binary patients seeking cervical screening face numerous barriers ranging from not receiving an invite due to the NHS not recording a person’s transgender status on their patient record, to samples being refused from the lab if samples are marked as male. It is important trans patients’ experience of screening is as straightforward as their cisgender peers,”

There is now lots of work being done to uncover disparities in cancer care for queer people, and you can read about it here, here and here, but my question is:

 

For those of us working in health institutions, how do we change this?

And when I say ‘us’ I don’t mean queer people, I mean all of us. The answer is actually quite straight-forward:

  • Inclusive study design
  • Inclusion of queer communities through patient and public involvement (PPI) activities
  • ‘Loud and proud’ reporting

Inclusive study design

Consideration of your study population in the early stages of your research should be careful not only in the sense of getting the results you need but also in how to get a representative group. During the life cycle of the trial, your population and stakeholders should be considered at every new stage. Every design decision has the potential to include or exclude a group of people.

Inclusion of queer communities in PPI

The phrase ‘nothing about us without us is for us’ rings true in many settings, including in PPI work. Diversity in PPI is important from a democratic perspective and to reduce inequalities in health research by offering perspectives from a range of lived experiences. This may also go some way to repairing the relationships between health institutions and queer communities.

Dr Alison May Berner states “improving cervical screening for trans men and non-binary people cannot employ a one-size-fits-all approach. It requires improved trans status monitoring in healthcare as well as services that are co-designed and coproduced to better meets the needs of this patient group.”

Reporting

For want of a better word, researchers can have pride in their inclusive research. Their results will be more applicable to more people and reporting on institutional progress towards inclusivity will put researchers at the forefront of this fast-evolving area of work.

 

A case study for change

YouScreen is a cervical screening study that offers at-home self-sampling kits via post or GPs with the aim of increasing cervical screening in five London boroughs with the lowest screening rates. Information about YouScreen can be found on the Small c website. The team worked with Live Through This to amend previously trans-exclusionary gendered terminology. The study now addresses trans and non-binary people directly with tailored guidance:

“If you are not registered as female with your GP and you have a cervix, your GP may invite you directly. Trans men and non-binary people with a cervix who are overdue cervical screening can take part.”

Screen capture from the Small c website for YouScreen, with gender neutral messaging.
Screen capture from the Small c website for YouScreen.

The rewording formed part of a larger amendment and received no pushback from reviewing bodies – a delight to hear as a researcher, former REC expert member and a queer person championing changes like these.

The work of the YouScreen study team shows that it doesn’t require an inordinate amount of effort to be inclusive and that research itself is heading in this direction. The change was welcomed by Jo’s Cervical Cancer Trust (Jo’s) who have launched information for medical professionals and for the public on cervical screening for trans and non-binary people. Jo’s provides in-depth, evidence-based advice and resources to directly address the problems identified by these groups with the aim of improving cervical screening uptake and patient experience. While this work is stand-out and sector-leading right now, we can hope that this will not be the case as more and more research and health institutions follow their lead.

 

In summary

What do we want? Inclusive research practices that value diversity, recognise the need for equity and a long-term commitment to upholding these principles. When do we want it? Now.

 

The views expressed are those of the author. Posting of the blog does not signify that the Cancer Prevention Group endorse those views or opinions.

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About Georgia Mannion-Krase 5 Articles
Georgia is the Research Follow-up Portfolio Manager in the Cancer Research UK & King's College London Cancer Prevention Trials Unit. (She/they)

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