I am both a clinician and a researcher, can I publish information about my own patients using data from the NGRL?

Question

I am both a clinician and a researcher, can I publish information about my own patients using data from the NGRL?

Answer

You must follow the appropriate rules depending on whether you are acting in a clinical capacity or as a researcher.

Researchers who want to publish data from the National Genomic Research Library (NGRL), accessed through the Research Environment, must submit an Airlock request to extract de-identified data, that is reviewed to ensure individual participants could not be identified. For additional data collection (beyond that which was collected for the 100,000 genomes project or for testing within the Genomic Medicine Service) you would need to seek your patient’s consent for publication, according to local processes.

If you are the participant’s clinician and writing a publication solely using data returned to clinical teams, from the clinical record, and without accessing the Research Environment, there is no need to submit an Airlock request. You will need to follow usual consent processes for the publication of patient information. Genomics England is keen to encourage publications and sharing of data; we recognise that lots of work is done under local approvals and processes, using the data returned to clinical teams, that is very beneficial for our participants.

Please use the standard Genomics England acknowledgement which can be found on our publications page.

Please also inform the Research Management team via research-network@genomicsengland.co.uk, so that we can record outputs (direct and indirect).

Last updated

This page was last updated on the 08 Nov 2024.