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. Most recently, members of the team have participated in a series of written activities and co-design workshops across four key areas of support which have been identified collectively. The reflections and proposals presented at these workshops have been developed into a guidance document (currently referred to as our ‘support manifesto’) and a collection of support pamphlets. In the next phase of the research, we intend to share the manifesto with members of selected VSC support groups for further input, discussion and consultation, adapting and developing the document in collaboration.
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)
Paul Dutton, Klinefelter’s Syndrome Association UK (KSA UK)
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
We are also joined by a number of other valued collaborators who have chosen not to be named.