Deposit data into a University repository

These principles provide a basis for discussing whether RNA (ribonucleic acid) datasets can be shared and deposited into the University of Leeds Research Data Repository. 

RNA datasets vary widely in their origin, consent arrangements and potential risks. No single prescriptive framework can easily be applied to all circumstances.

How we use these principles

These principles inform our open conversations with researchers about the context of the data, consent and governance in place and any ethical considerations that may apply.

Where we are unable to reach a shared position with the researcher or where a case is more complex, higher risk or involves unresolved governance questions (for example, uncertainty about consent for data sharing, continuing Research Ethics Committee (REC) or HTA obligations or potential identifiability concerns), we will refer the case to the Data Access and Retention Group (DARG) for further consideration.

These principles do not replace regulatory requirements. 

Principles

1. The origin of the RNA data is a key factor – The source of RNA data should inform assessments of risk, consent and governance requirements. RNA derived directly from human tissue carries greater ethical and governance considerations than RNA derived from established cell lines, which is typically associated with lower consent and ethics-related risks.
    
2. Onward sharing must be consistent with consent and governance requirements – Where RNA is derived from tissue bank or clinical samples, we must be satisfied that sharing of the resulting dataset aligns with the governance requirements of the tissue bank or NHS Research Ethics Committee. Sharing should not contradict the information that was provided to the data subject (or participant).
    
3. Consider current and future identification risks – Re-identification risk for RNA data is generally considered low. Small cohorts or rare disease datasets are not inherently higher risk where appropriate anonymisation, consent and ethical approval are in place.
   
   However, we will take account of the context in which the data was generated and shared, including whether evolving analytical techniques or future data linkage capabilities could change the risk profile over time.
    
4. Respect external governance obligations – Where samples were originally collected under the oversight of a tissue bank or NHS REC, we will respect any continuing governance obligations or conditions that apply to derived data, including requirements for confirmation or approval prior to onward sharing. In many cases, this may involve proportionate confirmatory checks (for example, written confirmation that there is no objection to onward sharing) rather than formal re-approval.
    
5. Use external repositories when appropriate – Where RNA datasets cannot be accepted locally or where discipline‑specific repositories are more appropriate, we may advise researchers to deposit their data in recognised external repositories.