Anonymised Genomic Data and Samples

Anonymised data and samples are initially single or double coded but the link between the subjects identifiers and the unique code(s) are subsequently deleted. Once the link has been deleted it is no longer possible to trace the data and samples back to the individual through the coding key(s). Anonymisation is intended to prevent subject re-identification. As anonymised samples and associated data are not traceable back to the subject it is not possible to undertake actions such as sample withdrawal, or the return of individual results. The use of anonymised data and samples does not allow for clinical monitoring, subject follow-up or the addition of new data. The deletion of the coding key(s) linking the data and samples to the subjects identifiers provides additional confidentiality and privacy protection over coded data and samples, as it prevents subject re-identification through the use of the coding key(s) (ICH). (NCI Thesaurus)

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