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EBISPOT / DUO

Ontology for consent codes and data use requirements
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New Term Request: Benefit sharing required #67

Open MKonopko opened 4 years ago

MKonopko commented 4 years ago

New term: benefit sharing required.

Per H3Africa feedback:

This requirement indicates that benefits resulting from secondary use (e.g. drug manufacturing) are shared with the participant community.

@mamanambiya could you please provide an example of this?

mamanambiya commented 4 years ago

Example from consent form:

"If this research leads to commercial gains or commercial production, this will be jointly owned by the participating institutions."

Changes in the genes could be detected in anyone we study. For those genes known to be of significant medical significance and direct or associated with a disease or associated with pathological conditions likely to benefit from early treatment, we will inform you.

mcourtot commented 4 years ago

Lyndon clarifies that this is between participating institutions (not to the participants) - line "If this research leads to commercial gains or commercial production, this will be jointly owned by the participating institutions."

@solideoglori : is this useful as data use term or should this be further detailed in a legal agreement eg collaboration agreement. Is this really a primary research use case? Lyndon: in cases where a drug is developed from the data then the original participant community would get the drug for free or at a discount. Not many examples for this at the moment. @solideoglori : good intention, would be good to bring up with group as to how this would need to be structured for legal aspects. "before being approved to use it you would need to have your institution and the custodian institution in a legal agreement"