Withdrawing consent

What happens to already collected research data when a participant withdraws from research?

This needs to be considered on a case-by-case basis, but it is best if researchers consider this in advance and provide information about this in the information sheet and consent form.

Much depends on the state of processing or anonymity of the data, which may determine whether it is actually feasible to remove an individual’s data.

Where data have been anonymised and shared this is likely to be impossible.

For large-scale longitudinal surveys, usually all already collected data are kept in the database when a participant withdraws.

For qualitative longitudinal studies, withdrawal of existing data can be very damaging to a study with a small number of participants. However, no researcher wants to be in a position of retaining data if a participant wants complete and total withdrawal.

Considerations for researchers dealing with participants wishing to withdraw:

• If a participant requests retroactive withdrawal of all their contributed data, seek a meeting to explain to the participant the costs of this to the project.
• Discuss whether some of the data could be kept/used, for example if data can be completely anonymised.
• Consider the ethical duty to the participant and the risk to a project  – loss of goodwill can offset any possible gain by retaining the data.