Proposal 2: New `specimen sharing directive` class

[rralifia]

Issue: Gap 2 – specimen sharing directive class

New terms / entities

• specimen sharing directive (class)

Type

• Class

Rationale

ICO includes data sharing directive to describe permissions or processes for sharing data/information, and has terms relating to biospecimen research. However, many consent forms distinguish clearly between what can happen to data and what can happen to biospecimens.

For permission-aware querying of biobanks, we need to distinguish clauses that explicitly govern sharing of physical specimens (including derived materials) from those that only govern data. Typical patterns are:

• “De-identified information may be used or shared with other researchers.”
• “Biospecimens will not be shared.”

A dedicated specimen sharing directive class would allow us to annotate and query specimen-sharing policies separately from data-sharing policies.

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Details

specimen sharing directive

• Label: specimen sharing directive
• Definition:
  A directive information entity that prescribes whether, under what conditions, and with which recipients biospecimens (including human biological materials and their derivatives) may be shared beyond the original study team or repository.
• Subclass of (intended):
  • directive information entity
  • (Optionally also aligned as a sibling or specialization of data sharing directive, and/or related to “directive about research of biospecimens”, depending on ICO maintainers’ preference.)
• Example of usage:
  • Clauses from Study NCT05102773:
    • “De-identified information from this study may be used or shared with other researchers.” → instance of data sharing directive.
    • “Biospecimens will not be shared.” → instance of specimen sharing directive expressing a negative sharing condition for biospecimens.

[ontoden]

We have generated a new term 'specimen sharing directive' under 'directive information entity' with the term ID: ICO_0000198:
http://purl.obolibrary.org/obo/ICO_0000198