Genomics England are working to develop a way of keeping in closer contact with the people whose data they look after: i.e. 100k genomes project participants, people on their covid study, and people who sign up for the research via the NHS Genomic Medicine Service.
What would we like to find out?
We are looking to better understand the experiences of individuals who have encountered whole genome sequencing, as a part of their (or someone they care for’s) diagnosis or treatment journey. Specifically, we want to better understand the needs of people who have consented to their genomic data being stored in Genomics England’s research library (the NGRL). As part of this work we are also interested in talking to people who have had their genome sequenced but did not consent to it being added to the library.
Who are we looking to speak to?
· have had or have cancer, or
· live with a rare genetic health condition, or
· are the parent of a child with a rare genetic health condition, or
· are the guardian or caregiver of another person with a rare genetic health condition
· · consented to their (or the person they care for’s) whole genome sequencing being tested either as a part of their diagnosis or treatment, or for altruistic purposes.
What are we be asking of you?
Depends on the participant profile and the state of the project, we can set up a 90-minute informal interview or a group session, done remotely. You won’t need to prep anything for the interview - your honest experiences are what matter most to us. We’d like to learn more about your healthcare journey and will be exploring themes like data and trust.
What will you get in return?
We really appreciate people taking time out of their week to do this, so in return we’ll give you £100 for your time and energy.
What happens after the participation?
We will be running completely optional follow-up sessions, for which we will offer a further £100. We will provide further details about these at the end of the first session.
If you’re interested in taking part or know somebody who might be, please fill out this survey, which aims only to confirm all interview respondents meet the selection criteria for this piece of research and also to make sure we have a representative sample.