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Note: This factsheet has been designed as a post-session handout for learners taking part in a Genomics Game session, but can also be used as learning resources in other settings. See the full collection here.

Key facts

  • A patient’s genomic data is like any other health record and should be handled sensitively.
  • The data will comprise the genomic sequence – up to 3 billion letters of DNA assembled in the correct order – which may be paired with the patient’s phenotypic data (their health record).
  • Data can be safeguarded by:
    • firewall and encryption;
    • storing data away from personal identifiers;
    • restricting and monitoring access to data; and
    • a robust consent process.

Did you know?

  • Sequencing one human genome generates around 200GB of data – the capacity of a typical computer.
  • When a person agrees to a genomic test, the consent conversation should clearly lay out how their information will be stored and who can access this information.
  • There are very strict rules about who can access genomic information that is held by the health service.

Find out more

For more information about managing genomic data, read about the 100,000 Genomes Project.

Details

Publication type

Genomics Game factsheets

First published

27th June 2019

Page updated

27th June 2019

Document Download

Game factsheet 8: Data protection