Consent for data sharing

Informed consent is an ethical requirement for most research and must be considered and implemented throughout the research lifecycle, from planning to publication to sharing.

Failure to properly address issues of consent may restrict the opportunities for initial use of data, the publishing of your results and the sharing of the data.

Overview

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.

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

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.

Researchers can consider for 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
  • The ethical duty to the participant and the risk to a project for loss of goodwill can offset any possible gain by retaining the data
Informing participants

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