NuGO Guideline 12


Fate of the sample and associated data if consent is withdrawn

Withdrawal can relate only to identified or coded samples and data. In case the volunteer withdraws his/her consent, he/she should have the right to decide whether samples should be unlinked anonymized or obliterated. Research volunteer should be advised to take into consideration the importance of keeping materials within biobanks and explained that, alternatively to their obliteration, materials can be unlinked anonymized by stripping off all identifiers permanently (see Guideline 1). If the volunteer did not explicitly request the obliteration of the sample, the researcher may retain sample unlinked anonymously. The same is true for study data about the volunteer collected so far. Generally, it is preferable to keep the data unlinked anonymized unless the volunteer do not insist explicitly on deletion.