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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.

Flat illustration of a diverse crowd of people walking different directions

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.

Make a lasting impact

Participants who donate their genome sequence and health data can potentially get answers for their own diagnoses, plus provide answers for others with similar conditions, now or in the future.

Arthur joined for that reason – to find answers for not only him but perhaps his future children, grandchildren, or others who also have been diagnosed with albinism. Watch his story in this short video.

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.

Read more on how data is used
Current initiatives

See what we're working on

The Participant Panel

Providing the lived experience

Because of our focus on participant input, we work closely with our Participant Panel, who advise the Genomics England Board and actively engage in decision-making across other committees and boards.

It's made up of genomic research participants and their carers. They work to ensure that the voices of those taking part, and their experiences and ambitions, inform our work.

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