Who will look after my sample?
Samples will be managed by the NIHR BioResource, under their contract with the NIHR National Biosample Centre.
Will my entire DNA/genome be sequenced?
Your genome is your complete set of DNA. Initially, we won’t be sequencing all of your DNA but instead will specifically look at genetic variations mostly known to be common, but some rare in the population. We will use a DNA microarray to genotype ~650,000 genetic variations that allow us to capture information about >90% of the genome. As technology improves, the project or NIHR BioResource team may sequence all or part of your genetic code, to get improved coverage of rarer genetic variants. All your genetic data will be stored securely in order to allow us to improve our understanding of the development and treatment of eating disorders, as well as other health studies, as part of the NIHR BioResource.
Can I access my genetic data?
The NIHR BioResource will provide your genetic data if you request it, and it is available. Please email firstname.lastname@example.org stating that you would like to request your data. Due to the processing time required, the earliest availability for data will be in 2020.
Will the saliva sample tell you about my ancestry or health?
We are only using the genetic data that we extract from your saliva for general research purposes, to improve healthcare and not for individual clinical diagnoses. In the rare instance that we do find something of clinical importance, we will write to your GP recommending further investigation.
Will I receive information about my results?
The NIHR BioResource Centre Maudsley distributes a biannual newsletter in which we will communicate our findings to members of the EDGI. In addition, we will update members of any new findings on the Useful Links page of the EDGI.