Clinical research with trans patients: a critique

WPATH_BuenoAr_Logo_reverseIn November I participated in a panel on research ethics at the 2018 WPATH Symposium in Buenos Aires, “Ethical Considerations in Transgender Health Research Practice”.

I presented a talk based on work I have undertaken with Dr Michael Toze (who sadly could not join us at the conference). Entitled Trans Health Research at a Gender Identity Clinic, the talk critiqued clinical research methods employed at a UK gender clinic, using the example of published research on video gaming.

I argued that clinical researchers should be mindful of the power dynamic that exists between them and their patient/participants. I also presented evidence that methodological and ethical issues have resulted in harm to participants, and undermined the validity of empirical claims.

This talk was kindly recorded by Ellen Murray, and you can listen to it below.

 

I have also uploaded produced a transcript of the talk:

Trans Health Research at a Gender Identity Clinic

And you can download the slides here.

Please do feel free to download and share this talk with anyone you think might find it interesting or useful, as long as myself and Dr Toze are credited.

The talk followed a remote presentation by Ali Harris, and preceded a talk by Noah Adams, who discussed the paper we wrote in collaboration with Jaimie Veale, Asa Radix, Danielle Castro, Amrita Sarkar and Kai Cheng Thom: Guidance and Ethical Considerations for Undertaking Transgender Health Research and Institutional Review Boards Adjudicating this Research.

Tickbox diagnosis: can you measure trans feeling?

Nottingham Centre for Transgender Health are currently developing a “Gender Dissonance Severity Scale”.

Gender Dissonance Severity Scale

I can see why some practitioner-researchers might think this is a good idea. The clinical protocols at GICs such as Nottingham currently require trans patients to demonstrate that they can cope with living a “trans” life in order to access “irreversible” treatments such as hormone therapy. At present, this is demonstrated through patients’ adherance to the “Real Life Test”.

“[I]t is the view of many clinicians working in the field – including some of whom are transgender themselves – that living as their experienced gender allows individuals to test their gender identity in the real world before the initiation of potentially irreversible treatments […] transgender people who have poor social and interpersonal skills may be more likely to encounter difficulties when socially transitioning.. […] In order for an individual to be accepted for treatment, they need to socially transition first, which includes not only living as their experienced gender but also changing their name and most legal documents.

(Arcelus et al., 2017)

Wouldn’t it make life easier for clinicians though, if they could also ascertain whether or not their patients feel sufficiently trans?

Enter the Gender Dissonance Severity Scale, which aims to explore “how people feel about their gender, body and quality of life”.


What is being measured?

There are a number of problems with the concept of the Gender Dissonance Severity Scale. The most fundamental is the question of how far you can adequately and consistently measure feeling.

This is a particularly a problem for nebulous concepts such as “gender dysphoria” and “gender dissonance”. That these phenomena exist is not in doubt – many trans and non-binary people across the world can attest to the reality of dysphoric feelings in relation to our bodies and/or gender roles. But these experiences vary greatly from individual to individual, mediated by collective factors such as social context and culture as well as individual differences.

Moreover, dysphoria varies within people as well as between people. A person might feel less dysphoric one day, and more on dysphoric another – depending on factors such as where they’re going, who they’re seeing, how their bodies look, how their bodies feel. A person might feel more dysphoric, for instance, if their facial hair looks particularly thick, if they’re having their period, or if they’re about to attend an appointment at a clinic that assesses their transness. Or they might feel less dysphoric, for instance, if their hair looks great today, if their gender identity feels more aligned with their body, or if they’re about to attend an appointment at a clinic that might grant them access to hormones.

So any attempt to measure gender dysphoria or dissonance may be thwarted by the ever-shifting nature of the thing that is supposed to be measured. One person’s dysphoria can be another person’s euphoria. And a measurement that is “accurate” for a patient on one day might be “inaccurate” on the next.


Who is doing the measuring?

In recruiting participants to assist them in developing the scale, researchers based at Nottingham GIC have argued that the scale will help measure the “effectiveness” of treatment: i.e. how interventions such as hormone therapy and surgeries improve patients’ quality of life. This is no doubt an admirable goal, and will expand upon existing evidence that trans people benefit from having transitioned.

However, there is another proposed use for the scale, as described in the following excerpt from a request for research participants.

From the findings, we hope to develop a new outcome measure that could be used by GP’s to make referrals to transgender health services.

This is a very troubling proposal. It suggests that the Gender Dissonance Severity Scale could perhaps be used as a form of screening mechanism before trans patients are even referred to a gender clinic. Patients could perhaps be refused treatment altogether if they don’t appear to be “dissonant enough” according to the blunt measure of the scale.

Pre-prepared questionnaires are already being used to assess patient distress for those needing to access NHS mental health services through IAPT. Patients are often invited to answer questions on the phone, with access to services depending on how well they meet the questionnaire criteria.

It seems therefore that the Gender Dissonance Severity Scale could potentially be used as an additional layer of gatekeeping, reducing referrals to gender clinics (which are currently seeing a record number of patients) at the expense of those in need of care who happen not to meet the specific criteria of the test.


Subverting measurement

Of course, trans patients have a long-standing approach to dealing with barriers to care: we share information amongst ourselves, learning the “right answers” to give in clinical contexts. This is great for the individual trans person who wants to jump through the necessary hoops in order to access care, but an awful situation for clinical research, where supposedly firm findings might be built upon the decidedly shaky foundation of trans people making up the answers that they think clinicians want to hear.


Towards collaboration?

There is already a lot of mistrust between many trans patients and gender identity specialists. The development of flawed measures such as the Gender Dissonance Severity Scale may only compound this.

While Nottingham GIC does have at least one trans clinician involved in developing their research programme, they have yet to engage more widely with the trans research community. Moreover, few opportunities exist for clinicians to learn about their patients’ desires and interests outside of a context where they have a great deal of power over said patients’ healthcare. But these are issues that can be addressed: through better community outreach, communication, and collaboration, as well as reflexivity and humility on the part of researchers.