{"id":1866,"date":"2022-02-28T05:30:30","date_gmt":"2022-02-28T05:30:30","guid":{"rendered":"https:\/\/blogs.kcl.ac.uk\/cancerprevention\/?p=1866"},"modified":"2022-02-28T05:30:30","modified_gmt":"2022-02-28T05:30:30","slug":"pride-in-research-the-legacy-of-erasure-and-the-future-of-lgbt-inclusive-trials","status":"publish","type":"post","link":"https:\/\/cancerprevention.qmul.ac.uk\/index.php\/2022\/02\/28\/pride-in-research-the-legacy-of-erasure-and-the-future-of-lgbt-inclusive-trials\/","title":{"rendered":"Pride in Research: The legacy of erasure and the future of LGBT+ inclusive trials"},"content":{"rendered":"

Note: this author uses the term \u2018queer<\/a>\u2019 to refer to both: people who did not have terms like \u2018LGBT+<\/a>\u2019 during their lives; and as an inclusive umbrella term for LGBTQIA+<\/a> 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.<\/em><\/p>\n

Queering the clinic<\/h3>\n

I was doing my GCSEs when Section 28<\/a> was repealed. I don\u2019t remember it happening because I didn\u2019t know what it was. I was already \u2018out,\u2019 and it hadn\u2019t 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.<\/p>\n

I grew up in the town Alan Turing<\/a> 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 \u2018alternative lifestyle\u2019 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<\/a>, public health pioneers<\/a> and bioprinting trailblazers<\/a>.<\/p>\n

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\u2019t 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<\/a> of queer scientists, researchers, and medics that I had inherited until much, much later.<\/p>\n

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.<\/p>\n

Much like other marginalised communities<\/a>, 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<\/a> & recent backtracking on the Gender Recognition Act<\/a>. Stonewall\u00a0<\/a>found that 14% of LGB<\/a> people, and 37% of transgender<\/a> people, have avoided accessing healthcare services due to fear of being discriminated against. Results from the National LGBT Survey<\/a> found the same. For trans people from ethnic minorities, the figures are even worse<\/a> 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.<\/p>\n

Say you work up the nerve to go for a cervical smear test, what if you don\u2019t look like you have a cervix, or your medical notes list your gender as male but not transgender? What if you\u2019re a survivor of sexual assault (as queer people have an increased chance of being<\/a>)? What if you don\u2019t have a permanent address (like disproportionate numbers<\/a> of queer people)? And what if, like me and 37% of lesbian and bisexual women<\/a>, you\u2019ve incorrectly been told that you don\u2019t need to be tested for HPV because of your sexuality?<\/a><\/p>\n

Stewart O\u2019Callaghan, founder of\u00a0Live Through This<\/a> (a cancer support and advocacy charity for the LGBTIQ+ community) stated, \u201cTrans and non-binary<\/a> patients seeking cervical screening face numerous barriers ranging from not receiving an invite due to the NHS not recording a person\u2019s transgender status on their patient record, to samples being refused from the lab if samples are marked as male. It is important trans patients\u2019 experience of screening is as straightforward as their cisgender<\/a> peers,\u201d<\/p>\n

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

 <\/p>\n

For those of us working in health institutions, how do we change this?<\/strong><\/h3>\n

And when I say \u2018us\u2019 I don\u2019t mean queer people, I mean all of us. The answer is actually quite straight-forward:<\/p>\n