Jillian and her family signed up for the 100,000 Genomes Project in search of a diagnosis for her severely disabled son. She is now Chair of the Participant Panel at Genomics England, which oversees what the company does with the whole genome sequences and associated health data it holds in the National Genomics Research Library.
She speaks up for research participants in several different fora, including the UK National Genomics Board, HDR UK’s Using the Data Delivery Group, the NHS Genomic Medicine Service’s People and Communities Forum and NHS Digital’s Research Advisory Group as well as providing advice to a number of academic studies on the basis of her lived experience. Her son was diagnosed with a very rare genetic disorder, which led Jillian to become a founding board member of the CureGRIN Foundation, a US-based non-profit organisation. All this is a long way from her original career, as a chartered town planner, in consultancy and the civil service.
