Participant withdrawals on UKB-RAP

  • Updated

Participant trust is fundamental to the success of UK Biobank and the wider research community. One of the key ways this trust is upheld is through the correct and timely handling of participant withdrawals.

When a participant chooses to withdraw from UK Biobank, they are exercising their right to control how their data is used. It is therefore essential that withdrawn participants’ data are no longer accessed, analysed, or retained within research environments beyond what is explicitly permitted under UK Biobank policy.

Performing participant withdrawals on the UK Biobank platform ensures that:

  • Participant consent is respected: honouring withdrawal requests is a core ethical obligation and central to maintaining public trust.
  • Researchers remain compliant: withdrawals help ensure alignment with UK Biobank’s access procedures, data governance requirements, and relevant regulatory frameworks.
  • Data integrity is maintained: removing withdrawn participants prevents inadvertent inclusion in analyses, supporting the accuracy and validity of research outputs.
  • The platform remains fair and secure: consistent application of withdrawals across projects ensures that all researchers operate under the same rules and safeguards.

 

Enforced withdrawals

Since October 2025, DNAnexus has provided researchers with a voluntary option to perform participant withdrawals within their projects. To ensure consistent compliance across the platform, from 1 April 2026, DNAnexus will begin enforcing participant withdrawals where required.

Users can find the remaining days of your grace period listed under the "Settings" page in the UI.

DNAnexus will communicate directly with any researchers who are actively undergoing the withdrawal process, particularly where access to projects or certain platform capabilities may be temporarily affected during this time. This will be performed via email. Please ensure your communications with DNAnexus have not been disabled.

Researchers should note that:

  • Individual withdrawals are expected to take approximately 1-2 days to complete from start to finish.
  • A minimum of two weeks notice will be provided to researchers before an enforced withdrawal period begins, allowing time to plan and prepare.
  • Any temporary limitations to project access or functionality will be clearly communicated in advance.

What will happen

Before your enforced withdrawal you can:

  1. Find the remaining days of your grace period listed under the "Settings" page in the UI OR
  2. Join the queue for an earlier manual withdrawal

Please note: DNAnexus will be emailing all users two weeks prior to their enforced withdrawal however if users have blocked emails from DNAnexus you may not receive this communication. Please ensure you do not have your DNAnexus communications disabled or blocked.

On the day of your enforced withdrawal you will lose access to certain resources, specifically:

  1. Population-level dispensed files, including files like .fam and .sample, which contained the withdrawn participant.
  2. The dispensed database will be removed, which will impact your cohort browser experience.

To restore access to these files and the database, users must click the "View Details” and “Complete Updates" button to complete the withdrawal process update.

DNAnexus thanks researchers for their patience and cooperation during this period.

These measures are designed to support researchers while ensuring that participant choices are respected and that the UK Biobank platform continues to operate in line with its ethical and governance commitments.

If you have questions about how participant withdrawals are managed or how upcoming enforced withdrawals may affect your project, please refer to the DNAnexus support team for assistance or find more information on the DNAnexus documentation page.

 

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