Within the UK many organisations, including the NHS, increasingly embrace and endorse patient engagement, with research funders actively seeing community involvement - particularly with minoritised and marginalised community groups - as fundamental to the success of research projects. Community trust in health and medicine is vital for successful outcomes, as demonstrated during the recent pandemic. Trans research should be no different.

Trans+ people ¹ have often been significantly overlooked and underrepresented within healthcare research. In the UK, there has been a sustained and highly politicised campaign targeting trans youth rights and access to healthcare. This led to the publication of the Cass Review ², an independent review commissioned by NHS England, that has faced backlash and widespread condemnation from many parts of the medical and academic community. For example, researchers and clinicians have noted that it ‘repeatedly misuses data and violates its own evidentiary standards by resting many conclusions on speculation’ (McNamara et al., 2024:2) whilst marginalising trans voices and community knowledge in the leadership and oversight of the research (Horton, 2024). Our experiences of delivering this research project indicate that years of repeated government consultations on trans healthcare that have effectively side-lined trans+ community views, means that it is now fear, defensiveness and politicized ideology driving policy, rather than patient needs in the trans+ community.    

Following our 3-year NIHR funded research project ³ about young gender diverse peoples’ experiences of healthcare (see here), we - Melissa, Samantha, Clara and Grin - reflect on the challenges of doing research in this environment for this essay. As four people involved in trans rights, research and representation, we reflect on the ethical choices we made that centred the voices and experiences of trans youth in our resource, and the role lived experience and subjectivity must play in future knowledge creation. We argue that trust urgently needs to be re-built and sustained in research relationships with the trans+ community in the aftermath of the Cass Review legacy, which is already being used to stop healthcare for trans+ people in both the UK and the USA, despite questions over its rigour and an investigation by the British Medical Association. We also argue that such a ‘reparative research’ approach needs to be built through safeguarding trans-positive researchers who are existing in precarious and liminal spaces that are not safe.

Community engagement in research and ethical choices

From the beginning, our project was inspired by and followed established good practice and ethical guidelines for research with the trans+ community set out by trans researchers (Adams et al., 2017, Vincent, 2018). A key component of these guidelines is meaningful collaboration with community stakeholders. The early ideas of our project were rooted in prioritising the voices, safety and wellbeing of trans+ young people on the project, because young trans+ people felt persistently ignored, politicised and not given a voice.

As Grin, one of the founding members of UK action network ‘Trans Kids Deserve Better’ explains, the Cass review has created a “strong atmosphere of anger and injustice”. He points out that all that trans+ youth are asking is to be able to “move through the world as we are, not as others tell us we should be”. This simple request for dignity and respect is backed up by the UN Convention on the Rights of the Child which was first adopted in 1989. As a conceptual framework for children and young people’s development and wellbeing worldwide, it has become widely recognised in policy, practice and research as an important model for a rights-based approach – this approach is critical for future engagement in research with the trans+ community. 

It follows that any research about young trans+ people should therefore always involve them as co-producers and active participants. Trans community-led organisations are also essential to providing oversight and leadership in trans research to ensure ethical practice and build trust in the research process. But this requires proper and sustained involvement with payment before a project starts and for universities and funders to also consider the risks to those organisations.  

Whilst community engagement might be widely welcomed on the one hand, it is particularly hampered by the promotion and platforming of public misinformation and harms.  For example, critics of puberty blockers openly ask whether trans young people exist at all. This not only invalidates trans people but presents a huge barrier to any community research if those conversations about trans existence dominate policy. Speaking from experience, Clara states that:

I was a trans young person. I knew I was from an early age even without access to information or medical help. Not having access to adequate healthcare at the time has had a lasting and sustained impact on my life. Had I had access to trans healthcare as a teen, my mental health would have recovered much sooner and I would not still be dealing with the irreversible physical impact of going through male puberty. Should we ensure that the path is correct for everyone? Yes. With great care. But trans young people do exist and without adequate healthcare, the impact lasts long into adulthood. And the impact may be worse now that young people know such healthcare is possible but is being denied to them.

 Lived experience and the wellbeing of researchers and research partners

As authors and advocates for the trans community we concur with others including Horton (2024) that the relegation of trans voices and community knowledge in the Cass review is a form of epistemic injustice. Denying and denouncing community involvement as ‘biased’ is a serious concern that needs challenge. For example, Samantha and Melissa reflect on the impact of and accusations of such ‘bias’ often levied at trans-positive or inclusive research, with deliberate intentions to invalidate the expertise and credibility of trans researchers.  Melissa noted as part of our shared reflections:

The experience of repeated and persistent harassment, orchestrated complaints including smearing of our team, our methodology and our stakeholders were because we took young gender diverse people seriously, involved trans-led organisations and had trans researchers on our team. We have felt the research environment become increasingly repressive as debate and division around trans healthcare has intensified.

We ask ourselves, how can we be expected to engage in community research, which always comes at an emotional cost to a researcher, when we do not feel safe and supported by the very system that asks community groups to trust us with their voices?

It is our belief that lived experience researchers enhance the nuance and validity of research. With both first-hand experience of navigating healthcare systems as a trans person, and academic training as a researcher, Samantha led our research fieldwork in a balanced and professional way:

The decisions I take in my research will always centre young people’s needs and seek to understand the complexities of young people’s lived experiences. My connection to my community as a researcher is powerful and transformative in research and education. Researchers embedded in the community have invaluable, situated knowledge since they are often engaged in the same social struggles as participants. This improves the capacity for empathy and forging meaningful connections with participants to obtain rich, impactful data. We are proud of the meaningful connection we established with trans communities in our research and view equal community involvement with marginalised and minoritised people in the research process as crucial to its success.

Grin agrees that the presence of lived experience researchers is vital for research to be supported, understood and engaged with by the trans+ community. Trust in research is not only fragile, but it is built on, over time. When this gets eroded or broken (as in the Cass Review), it creates a highly volatile environment for the medical and scientific community to try and shift. We all reflect on this sense of urgency that underpins why building trust and doing ‘reparative research’ is important now - to ensure that generations of trans people can trust in (medical and health) research in the future.

Methodology and impact

Methodologically, the research was deliberately designed with qualitative methods to allow us to gain more sensitive and reflective understandings of trans+ young people’s lives. However qualitative methods alone, without a commitment to anti-oppressive practice, risk producing patronising and pathologising conclusions. Such research approaches, as seen in the Cass Review, ultimately disenfranchise trans+ people. As a baseline, having agreed research values that are non-pathologising and validating of the participants we interviewed was crucial.

A key sounding board and source of constant support and advice when faced with persistent harassment and attempts to derail the project, were our Advisory board and steering committee that comprised of trans-led and trans positive charities and community organisations. Our relationship with advisory board members was built over time, starting before the project was funded. We purposely held several hour-long advisory meetings throughout the project to allow for honest views and reflections – including critical feedback to the team. This was a deliberate move to create ‘discursive space’ where new knowledge and ideas emerge. Being open to this and non-defensive was crucial to the project as we learnt so much from our community partners. Similarly, young people were actively involved in giving feedback through our youth panels, and given that trans and queer people of colour experience further multiple barriers we also established specific panels for young people of colour. These were run and led by two young TPOC (trans person of colour) co-researchers highly valued for their healthcare expertise and insight. Members of the panel discussed issues around trans health care, and how racism and white privilege impact the quality of healthcare received.

The impact of this project was described by evaluation participants who spoke about the comprehensiveness, depth, balance and optimism of the resources. We wanted the resources to provide relatability and relevance to those who view them. Young people told us that they valued the diversity and intersections of identities on the Healthtalk sites and the overlapping ways that race, neurodiversity, disability and sexuality shape trans+ peoples’ experience. As set out by Adams et al. (2017), an important ethical commitment in trans health research is to sensitively reflect gender diversity. As one young person described:

 [T]here’s a really broad range of people from different ethnic groups, different gender identities and that feels representative of the country in which it is produced….[it] feels like a microcosm of trans people in Britain…where you are not going to relate to every part of everybody’s story – you are going to relate to bits and pieces of other people’s story. That’s one of the best ways to organise something like this, have that range of voices so that someone can see themselves in any number of variants or perspectives.

Future directions

Although equal community involvement with marginalised and minoritised people in the research process is crucial for its success, it requires determined action by all stakeholders to overcome discrimination and (wilful) misinformation for this to become a reality. Research like ours could have even more positive impact if there is sustained and co-ordinated support from universities and funders to combat attacks on the integrity of a carefully designed research approach. In this respect, the stakes are high: valued members of the project received death threats for doing research in this area, with such threats framed as expressions of ‘freedom of speech’ despite the fact that they are in breach of the law yet go unaddressed.  It is of critical importance that progressive research institutions and funders safeguard staff.

Therefore there is an urgent need to actively and vocally support academic researchers supportive of the trans+ community, rather than take a ‘neutral’ (and harmful) view. By not condemning such behaviour, it actively supports it. Fear and misinformation are shaping university environments, meaning that it has become virtually impossible to do trans-positive research without unacceptable attacks and harassment – this has to change. We advocate for proper investment and support from universities to combat transphobic attacks and protect trans+ researchers. Ultimately, this relies on a cultural change programme to challenge conservatism within universities. The research community needs to reclaim lived experiences as being fundamental to research practice and view the situated knowledge from trans researchers as all the richer for being embedded within the social and cultural practices of the community.

A PDF VERSION OF THIS ESSAY IS AVAILABLE HERE

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This work is licensed under CC BY-NC-ND 4.0  

Disclaimer: The views expressed in this essay are not representative of the views of the British Science Association or UK Research and Innovation.

Footnotes and references

1. Terminology: In this article we use Trans+, trans and gender diverse interchangeably as umbrella terms to try and acknowledge the diversity of trans communities and our participant sample, understanding that trans people may describe themselves using one or more of a wide variety of terms. We also acknowledge the limitations of such terms as particularly Western, aware that this may occlude traditional Indigenous concepts of gender, especially those that normalize forms of non-binary gender expression (Adams et al. 2017).

2. The Cass Review was commissioned in 2020. Its purpose was to assess the current system of providing gender identity services to children and adolescents, particularly through the Gender Identity Development Service (GIDS) at the Tavistock and Portman NHS Trust.

3. The project referred to in this essay was developed in direct response to the NIHR commissioned 17/51 Gender Identity Health Services call.  The topic was referred to the NIHR by the NHSE Clinical Reference Group for (adult) Gender Identity Services, to seek evidence for improvement of service provision. It was one of three projects awarded NIHR funding to improve the care and support for young people and their families before and after referral to specialist gender identity services.  

Adams, N., Pearce, R., Veale, J., Radix, A., Castro, D., Sarkar, A. and Thom, K.C., 2017. Guidance and ethical considerations for undertaking transgender health research and institutional review boards adjudicating this research. Transgender health, 2(1), pp.165-175.

Horton, C., 2024. The Cass Review: Cis-supremacy in the UK’s approach to healthcare for trans children. International Journal of Transgender Health, pp.1-25.

McNamara, M et al. 2024. ‘An Evidence-Based Critique of “The Cass Review” on Gender-affirming Care for Adolescent Gender Dysphoria’ Available: https://web.archive.org/web/20240702100251/https://law.yale.edu/sites/default/files/documents/integrity-project_cass-response.pdf

Vincent, B.W., 2018. Studying trans: Recommendations for ethical recruitment and collaboration with transgender participants in academic research. Psychology & Sexuality, 9(2), pp.102-116.