EVERY year a small but significant number of babies are born intersex, with sex characteristics that do not fit those typically seen as male or female. This can lead to premature surgery, causing physical and psychological harm.
Now, a professor at the University of Huddersfield is collaborating with researchers throughout Europe to establish a network that will train a new generation of experts in a largely hidden social issue. The aim is to raise awareness and trigger new policies.
“The really important thing is that children have the chance to grow up without having medically unnecessary interventions. Then, they can decide for themselves what happens to their body,” said Surya Monro, who is Professor of Sociology and Social Policy.
She took part in a previous European project about intersex and human rights. It led to an international conference at the University of Bologna in 2016 and Professor Monro realised that there was a serious research deficit when it came to the social aspects of intersex.
To remedy this, she teamed up with collaborators at universities in Belgium, Ireland, Switzerland and Spain and secured EU funding for a project named Intersex: New Interdisciplinary Approaches (INIA). It begins in March and runs for 48 months.
A cohort of ten early-stage researchers will be recruited, and they will work together with 21 organisations from 10 countries on issues relating to intersex people and those with variations of sex characteristics. They will be able to work towards doctorates while carrying out INIA research.
“We will recruit internationally and these are good, well-funded positions so we are expecting that we will get the very best candidates,” said Professor Monro, adding that a condition of the funding is that the research fellows must not have spent most of the past three years in the country that will host them. This ensures the internationalism of the network.
The research fellows to be based at the University will investigate two topics; the experiences of older intersex people and equality and diversity policies. The other centres will research subjects that include the development of more effective care for intersex children and their families and how legislative change could support intersex people.
The other institutions that form INIA are the Université Libre de Bruxelles, Dublin City University, the University of Zurich, the Andalusian School of Public Health and the Universitat Autònoma de Barcelona. There are also to be collaborations with intersex activists and advocates, clinicians and other specialists. The result will be a consortium of 21 organisations from 10 countries.
The outputs from INIA will include an e-book and a raft of reports, plus films, workshops and a conference in Brussels. The aim will be to influence policy change.
“We would like to see support for non-surgical care pathways,” said Professor Monro. “Often these intersex babies and children have surgical interventions too young, before they can make a choice, and it can turn out to be very damaging.
“Parents and medical professionals often don’t have the information they need to make informed choices, so we would like to see more information provision for families and also more awareness in society generally.”