Patients and Participants
None of our work would be possible without the consent and support of patients and participants – they are at the heart of everything that we do. By enabling scientists and clinicians in their research, a patient’s data goes from being an isolated dot to a key part of the picture.
The collective power behind improving genomic medicine
Participants in genomic medicine and research come from a variety of backgrounds, but share a common interest in wanting the benefits of genomic medicine to be available quickly and widely – for themselves, their families, their communities and society as a whole.
In return, we make sure that participants have a say in how their data is shared and in shaping the programmes that use it, because it leads to better decisions about how genomics can have an impact on our healthcare and our lives.
Data in our initiatives
Maintaining your data security and protecting your privacy underpins everything we do.
All patient data is held in secure facilities based in the UK, accessible only by approved researchers in our secure, cloud-based Research Environment.
100,000 Genomes Project
Information on the 100,000 Genomes Project, including an overview of the…
Genomics, Healthcare and You
Exploring views on the future role of genomics in healthcare.
Newborn Genomes Programme
Designing the NHS-embedded Generation Study.
The Participant Panel
The Participant Panel is a key advisory group for Genomics England, working to ensure that the voices of patients, their families, and their experiences inform our work. It is made up of a diverse group of people whose data is held in the National Genomic Research Library. Members come from different walks of life and bring their life experiences of rare conditions or cancer.
