Withdrawal

Your data can help researchers for many years – or for as long as you wish to take part.

If you change your mind however and want to withdraw from the National Genomic Research Library, you are free to do so at any time. You don’t need to give a reason. This applies if you are a parent wanting to withdraw your child, or a consultee wanting to withdraw on behalf of somebody else.

A withdrawal form will be required to record this decision. The form can be requested from your healthcare professional or downloaded here.

There are two options to consider when withdrawing from the National Genomic Research Library:

  • This option is for situations where you would be content for your data to continue to be used for research, but want no further contact.
  • Genomics England will update their records to ensure you are no longer contacted.
  • Genomics England will continue to update and store information from your health and other records for use in approved research.
  • This option is for situations where you no longer wish for your data to be used for research and want no further contact.
  • Genomics England will not:
    • contact you directly
    • continue to update and store information from your health and other records
    • allow new research access to information that is held about you or use your information for purposes other auditing
  • Genomics England cannot:
    • remove data from research that is underway or has already been done; or
    • remove all records related to you from our databases
      • An audit record is needed to confirm that you were once part of the National Genomic Research Library and then withdrew; This information includes your first name, surname, date of birth, address and contact details
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