Jillian Hastings Ward
Chair of Participant Panel
What brought me to the 100,000 Genomes Project and the Participant Panel
My son was born in 2014 with global developmental delays and a severe sight impairment. Before his second birthday, he was also diagnosed with epilepsy and a movement disorder. We joined the 100,000 Genomes Project in autumn 2015 after all the other tests had come back negative. It was an easy choice for us, searching for an end to our diagnostic odyssey, and we hoped that others might also gain from it in the future. We also trusted that Genomics England would look after our data and make sure that it was used for good.
I had to give up work as a civil servant to look after my son, so I thought joining the Participant Panel might make an interesting, worthwhile but relevant change from everyday life as a carer. I was totally right!
My role as a Participant Panel member
I’ve been a member of the Participant Panel since it started in April 2016, and was immediately struck by how much access the Panel members had to the decision-makers at the heart of the Project. We can invite the most senior figures from across the Project to come and discuss their work with us, and it is always an honour to engage with them and their colleagues on behalf of the other participants. We have sometimes challenged them to do more, and they have usually responded well.
I became Chair of the Panel in summer 2017, and have really enjoyed the additional work that’s involved; I’ve been invited to speak about the Project, and my experience as a participant, at many events in the healthcare sector, and have learned a lot from my fellow presenters. I encourage other Panel members to make the most of their diverse professional skills and interests, for the benefit of the 70,000 participants they now represent, and I’m really pleased how much value we are now adding through all our work within Genomics England and beyond.
I also sit on the Access Review Committee, which scrutinises all the proposals from research consortia to come and use our data in their research. It is our responsibility to make sure that researchers are remembering the interests of the Project participants in their work. This has taught me a lot about the way that research is designed and conducted, as well as the vast scope there is for genomic information to lead to new discoveries all over the human body.
Future plans and hopes
Recruitment into the 100,000 Genomes Project may nearly be finished, but the research activity is only just getting started, and looks set to grow massively over the coming years. I’m keen to make sure that all the people who shared their data for this project can more easily find out about the research that is going on, and to help make links between participants and researchers that will bring benefits to both parties.
The 100,000 Genomes Project has demonstrated how valuable it is to have patients actively involved in decisions about how their data is used. I hope that we can encourage the new NHS Genomic Medicine Service to follow the example set by Genomics England in embedding patients at the heart of their organisation. I’d certainly like to help them do that.