The last decade has seen an unprecedented increase in the number of transgender and gender diverse people seeking gender affirming medical interventions and psychological support. Equally, there has been an unparalleled growth of clinical research in the field of transgender health (Sweileh, Citation2018). The rapidly evolving and developing field of transgender health research requires a clear need for ethical guidelines (T’Sjoen, Motmans, Arcelus, & Bouman, Citation2017). Only last year a comprehensive and concise set of ethical considerations for Institutional Review Boards (IRBs) and Research Ethics Committees (RECs) to refer to when evaluating transgender health research proposals were published (Adams et al., Citation2017). The authors thoughtfully outlined nine criteria that research in transgender health should adhere to. They include the following: (1) Whenever possible, research should be grounded, from inception to dissemination, in a meaningful collaboration with transgender community stakeholders; (2) language and framing of transgender health research should be non-stigmatizing; (3) research should be disseminated back to the community; (4) the diversity of the transgender and gender diverse community should be accurately and sensitively reflected; (5) informed consent must be meaningful, without coercion or undue influence; (6) the protection of participant confidentiality should be paramount; (7) alternative consent procedures should be considered for transgender and gender diverse [young] people below the legal age (commonly 18 years); (8) research should align with current professional standards that refute conversion, reorientation, or reparative therapy; and (9) IRBs and RECs should guard against the temptation to avoid, limit, or delay research on this subject.
This editorial will specifically discuss the first criterium, namely that research in transgender health should follow involvement of relevant stakeholders. Including patients and the public as partners in health research is gradually regarded best practice in many parts of the world, and some funding bodies increasingly make this mandatory (Wicks, Richards, Denegri, and Godlee, Citation2018). The same principle should apply to transgender health research. A collaborative effort is needed to reform transgender health research, and transgender and gender diverse communities should play a central role as equal partners in this process.
Senior researchers in the field of transgender health must lead by example to create this essential cultural shift. Cisgender researchers who have built a successful career by conducting research on transgender communities could repay these communities by mentoring and supporting junior transgender researchers (for example, as graduate students) to help to build the capacity for transgender communities to lead this research in the future (Veale, Citation2017).
The benefits of transgender and gender diverse community partnership are multiple: including community stakeholders in the research question(s) has the potential to focus research on areas relevant to participants and the community; to use appropriate and culturally-specific language (Bouman et al., Citation2017); to facilitate access and recruitment of participants; to build trust between research team and community stakeholders; to facilitate interpretation and contextualization of research results; to dispel the perception that trans individuals serve primarily as subjects of inquiry (as patients or participants) (Veale, Citation2017); to increase awareness of gender identity (cisgenderist) bias (Galupo, Citation2017); and to improve the dissemination of the research results. This list of benefits is not exhaustive. A lack of meaningful gender diverse community involvement input will most likely lead to a lower quality of research output as well as increasing levels of waste, bias, inefficiency and error (Macleod et al., Citation2014).
The International Journal of Transgenderism fully supports involvement and meaningful collaboration with community stakeholders for all research in transgender health, whenever possible. Consequently, from January 2020 onwards, our journal will require authors to report the extent of community stakeholder involvement in all submitted [clinical] research. In addition, we will require authors of clinical research papers to provide details of how they intend to disseminate results to the participants of their research as well as the relevant communities. This requirement will make us conform with other leading journals (Wicks et al., Citation2018).
Walter Pierre Bouman MD PhD
Jon Arcelus MD PhD
Griet De Cuypere MD PhD
M. Paz Galupo PhD
Baudewijntje P.C. Kreukels PhD
Scott Leibowitz MD
Damien W. Riggs PhD
Loren S. Schechter MD FACS
Guy T’Sjoen MD PhD
Jaimie Veale PhD
References
- Adams, N., Pearce, R., Veale, J., Radix, A., Castro, D., Sarkar, A., & Thom, K. C. (2017). Guidance and ethical considerations for undertaking transgender health research and Institutional Review Boards adjudicating this research. Transgender Health, 2(1), 165–175.
- Bouman, W. P., Suess Schwend, A., Motmans, J., Smiley, A., Safer, J. D., Deutch, M. B. … Winter, S. (2017). Language and transgender health. International Journal of Transgenderism, 18(1), 1–6.
- Galupo, M. P. (2017). Researching while cisgender: Identity considerations for transgender research. International Journal of Transgenderism, 18(3), 241–242.
- Macleod, M. R., Michie, S., Roberts, I., Dirnagl, U., Chalmers, I., Ioannidis, J.P., … Glasziou, P. (2014). Biomedical research: increasing value, reducing waste. Lancet, 383, 101–104.
- Sweileh, W. M. (2018). Bibliometric analysis of peer-reviewed literature in transgender health (1900-2017). BMC International Health and Human Rights, 18, 16. doi: 10.1186/s12914-018-0155-5.
- T’Sjoen, G., Motmans, J., Arcelus, J., & Bouman, W. P. (2017). The need of patient involvement in transgender healthcare research. Journal of Sexual Medicine, 14(12), 1494–1495.
- Veale, J. F. (2017). Reflections on transgender representation in academic publishing. International Journal of Transgenderism, 18(1), 121–122. doi: 10.1080/15532739.2017.1279868.
- Wicks, P., Richards, T., Denegri, S., and Godlee, F. (2018). Patients’ roles and rights in research. British Medical Journal, 362, 179.