Jillian Hastings Ward awarded MBE in the King's Birthday Honours
Jillian Hastings Ward has been made a Member of the Order of the British Empire (MBE) in the King’s Birthday Honours for her outstanding service to patients and participants in the field of UK genomics.
As the Chair of the Participant Panel at Genomics England, Jillian has not only represented the interests of thousands of patients, involved in the ground-breaking 100,000 Genome Project and beyond, but she has also helped to shape national genomics policy development in the UK, contributing to a world-leading genomics ecosystem.
Jillian has been a pivotal figure in the UK genomics community, and her work has changed the way researchers, doctors, and patients interact with and understand one another in the UK. One example of this is the Participant Panel’s delivery of a Language Guide to guide researchers, doctors and partners across the genomics ecosystem on the use of common genetic terms and how to talk about the people whose data is curated by Genomics England. She has also been instrumental personally and through her leadership in shaping how participants are actively part of the governance at Genomics England - for example participants’ role in making decisions as part of the independent Access Review Committee - and in shaping how Genomics England interacts with and supports its participants. This has been of immeasurable value to countless participants and families, improving their trust in and experience of participating in a project such as the 100,000 Genomes Project.
Her work and impact extend far beyond Genomics England. She also sits on the NHS England Rare Diseases Advisory Group, has been a lay adviser to Health Data Research UK and was a founding board member of the CureGRIN Foundation, a global charity set up to find treatments and cures for patients with GRIN gene disorders, like her son.
Jillian has co-authored numerous papers, outlining the benefits of research participants acting as critical friends and agents for change within the field as well as advocating for ethical consent when engaging patients, especially children. Her publications include the Nature Medicine article 'Health data: when children reach the age of consent' and the European Journal of Human Genetics article ‘Research participants: critical friends, agents for change’ authored by Jillian and other members of the Participant Panel.
Dr Rich Scott, Chief Executive of Genomics England said: “This award is a testament to Jillian’s exceptional dedication and impact on the field of genomics. Her work continues to inspire and pave the way for a future where patient and participant perspectives are integral to scientific advancements. There is no doubt that her courageous, compassionate approach and unwavering commitment have made a profound difference to the lives of many.
“Perhaps her greatest impact has been in grounding the ethics of genomic science and medicine in the real-life day to day experience of patients and their families. Her phrase “every datapoint has a face” has become a reference point for many.”
Jillian adds: “When I discovered my baby son was profoundly disabled, with a then-undiagnosed genetic disorder, I found a new source of energy to draw upon – that ‘fight or flight’ response is very powerful. I’ve been so lucky to have found this outlet for that energy, as he has been growing up. My colleagues and I on the Participant Panel were fortunate to be offered this platform to share our lived experiences and leapt at the opportunity to grab the attention of scientists, clinicians and policymakers in this emerging field at just the right time. I have loved every minute. There is still so much to do in advocating for patients and participants in genomics, but this is a lovely recognition that we are going in the right direction.”
