We wrote to Professor Sue Ziebland at the Nuffield Department of Primary Care, Professor John Powell at NIHR, and Dipex Charity (responsible for Healthtalk.org website) in July 2020 outlining our concerns about this project, which was launched on the Healthtalk.org website this week. We obtained reassurances, but we’re sorry to find that our concerns are realised now the project has gone live.
Our concern here is simply that families and GPs will be misled by the selection and curation of testimony, leading to treatment decisions that will harm. The researchers either don’t know the literature or have deliberately obscured it, which would amount to misconduct in research.
We’d like to work constructively with Healthtalk.org to make good the site’s shortcomings and will be writing again shortly. But here’s the letter we sent back in 2020. Listening is hard, we know, but it’s so sad that they didn’t adjust their approach.
Two Examples of Bias
Healthtalk.org is keen to play down any link between autism and gender dysphoria, citing a paper co-authored by activist junior doctor Jack Turban, saying “researchers do not think there is a link between the two (Turban & Schalkwyk, 2018).”
They don’t tell readers that many scholars strongly criticised the paper. For example, these authors felt that it was “perpetuating misunderstanding about the co-occurrence [which] places individuals at risk.” And these researchers asked for a more “nuanced approach…[to] help avoid creating a new area with polarized opinions, this time regarding a potential GD-ASD link. this seems counterproductive and not contributing to better care for those who need it.”
As we told Professor Ziebland in 2020, their advisers at GIRES have claimed that gender transition was a cure for autism: “young people who have been successfully treated, are often described as having no residual ASD. The symptoms have disappeared once the dysphoria has been treated.”
A second example of bias (there are many). “Young people who used private healthcare spoke positively about it. Private healthcare providers that serve England and Wales, for example, GenderCare, GenderGP and London Transgender Clinic (LTC), were mentioned…Generally, the process for accessing hormones was similar across private healthcare providers and NHS providers.”
This is misleading as Gender GP is based overseas, not subject to UK healthcare regulation and led by a doctor who received a criminal conviction for her gender work. Its assessments and standards bear no relationship to those set out in the NHS service specification and are widely seen as unsafe. Indeed, the GMC is currently taking the founders of Gender GP through a tribunal process due to very serious accusations made against them.
There’s no recognition that as many as 20% of young people stop their medical gender transition in the UK, half of them citing regret. We asked Professor Ziebland to account for this, but the site spoke to no young people who’d made that second transition back to their original gender role. Whatever Healthtalk.org’s researchers may believe, these are the figures that NHS England are having to plan for, this is the fairly chaotic reality for many vulnerable young people who are seeking an answer for their problems in cross-sex hormones.
Several parents in our group have children who’ve reconciled themselves to their bodies without going through with medical transition, even if they identified as trans for years. Such families deserve a voice and policymakers and GPs should account for their experiences.