Data / biological samples may be stored and shared for other research or non-research purposes if consent has been sought from research subjects.
However, unrestricted consent to any future uses that are yet unspecified should be avoided. This is because subjects would not be fully informed as to how their information or samples will be utilised, and how such usages might affect them later.
Data / samples that are stored and shared for future uses should be de-identified / anonymised, but this may not guarantee confidentiality. De-identified data / samples may be re-identified in the future due to the ever increasing technological capacity to perform data linking* and genomic sequencing.
| * Data linking is a technique used to link one dataset to another dataset by looking for any matching (direct or indirect) identifiers between them. Even if both datasets are initially anonymised, the combination of the two may contain enough information to identify a specific person. (11) |
Office for Civil Rights (OCR). Methods for De-identification of PHI [Internet]. HHS.gov. 2012 [cited 2019 Feb 1]. Available from: https://www.hhs.gov/hipaa/for-professionals/privacy/special-topics/de-identification/index.html