‘The joys of fragile X’: Exeter Law Fellows and graduate student on changing perceptions of genetic condition
Exeter College Law Fellows Professor Jonathan Herring and Dr Heloise Robinson have collaborated with Exeter College graduate student Radhini Gawarammana (2023, BCL) in publishing a salient article discussing fragile X syndrome (FXS). ‘The joys of fragile X: Understanding the strengths of fragile X and delivering a diagnosis in a helpful, holistic way’ was written by Professor Herring, Dr Robinson, Radhini Gawarammana, and academics from universities from across the UK and Europe. It is published in Neurodiversity, an open access peer-reviewed academic journal.
The purpose of the article is to help provide a positive framework for doctors, geneticists, and other professionals to draw on when it comes to diagnosing and offering support to people with fragile X syndrome. The delivery of a diagnosis should start with the strengths of those living with FXS. While FXS is commonly described in terms of the ‘problems’ associated with it and stigmatic language is used, this overlooks wider aspects of the condition, including its variability and positive aspects. This can be damaging both to the patient’s perception of themselves and to how others view them. A positive approach that is more inclusive and affirming would celebrate each person living with FXS along with their humour, talents, honesty, and perspective right from the moment of diagnosis. For example, people with FXS often present striking positive attributes such as high levels of compassion and a talent for remembering things.
Professor Jonathan Herring is DM Wolfe-Clarendon Fellow in Law at Exeter College. His research focuses on how the law relates to the things that matter most to us: our family, our friends, our bodies. He has written on a wide range of issues including caring, vulnerable adults, older people, children’s rights, marriage, ownership of body parts, pregnancy, rape, and disability.
Dr Heloise Robinson is Exeter College’s Singer Fellow in Law. Her research primarily relates to medical law and health law, bioethics, and disability in law and philosophy. She also focuses on equality, human rights, and feminist legal theory.
Radhini Gawarammana recently completed a Bachelor of Civil Law. She served as the MCR Race and Ethnicity Equality Officer during her time at Exeter College.
The research submitted in ‘The joys of fragile X’ is a valuable contribution to discourse around FXS with potential to change the way professionals view patients with the condition. You can read the full article here.
