Wellcome

culture + environment creating health + wellbeing engaged research

Reprofutures



Our pilot research, led by Dr Charlotte Jones, addresses the reproductive, fertility, relationships and parenting concerns of people with variations in sex characteristics (VSCs). This engaged research project brings together people with direct experience of VSCs, support group facilitators, activists, and campaigners, to draw on a range of expertise and recommend how reproductive information and support can be improved for people with VSCs in the UK.

Since November 2019, the collaboration team have been working together to plan the shape of this research. Last year, members of the team participated in a series of written activities and co-design workshops across four key areas of support which were identified collectively. In the next phase of the research, we used our findings to develop questions for a series of consultations with members of selected VSC support/social groups for further input and discussion. In our final stage, the reflections and proposals presented at these workshops will be developed into a guidance document / research report (currently referred to as our ‘support manifesto’) and support materials.

Through our support manifesto, we hope to imagine how a different and better world can be created for people with experience of VSCs, and to highlight reproductive concerns as a key area for improvement in healthcare, policy, and everyday relationships. This work is funded by the WCCEH and the Engaged Research Exploratory Awards.

Reprofutures research collaboration team:

Charlotte Jones (principal investigator)
Rachel Purtell (engagement facilitator)
Anis Akhtar
Paul Dutton, Klinefelter’s Syndrome Association UK (KSA UK)
Sara Gillingham
Magda Rakita, intersex activist
Tabitha Taya, founder of LivingMRKH (Mayer-Rokitansky-Küster-Hauser)
Kaz Williams, adult support coordinator of the CAH (congenital adrenal hyperplasia) support group, part of Living with CAH
Alex Woodward