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EBISPOT / DUO

Ontology for consent codes and data use requirements
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Term Change Request: Research-Specific Restriction #75

Open MKonopko opened 4 years ago

MKonopko commented 4 years ago

Term name and definition change request: "Research-specific restriction" to "other research-specific data use category"

Per H3Africa Feedback:

Original: This secondary category consent code indicates that use is limited to studies of a certain research type.

Changed: This data use category indicates ‘other’ research use is allowed e.g. economics or ethics research

Rationale: The original definition was not clear, and the changed definition is suited to the new structure.

Per @jlawsonbroad I believe these two definitions are drastically different. Per @mcourtot I agree - the first one indicates that you can use it ONLY for eg ethics research, while the second indicates that those are additional permissions. Per @GiselleMarie Interesting. I had this discussion with Sanger yesterday - they (and I) use it as the original version e.g., you can only use it for cancer research in children. Per @mcourtot Keep as is, but add clarification.

@mcourtot is this complete? @mamanambiya does adding this clarification resolve your issues as well?

mamanambiya commented 4 years ago

Still not totally sure what the definition means, and there definitely needs to be examples added to the definition or comments to make it clear in DUO. So as we understand it now, you use this code when restrictions to research type apply that aren't covered under the other existing terms.

GiselleMarie commented 4 years ago

Having thought about this I can see the source of confusion here.

DUO_0000007 = This data use limitation indicates that use is allowed provided it is related to the specified disease. This term should be coupled with a term describing a disease from an ontology, such as the Disease Ontology, HPO, MonDO to specify the disease the restriction applies to

For example - in this case you could have DUO_0000007 + MONDO_0007455 which means that the data can be used only for research into non-insulin-dependent diabetes.

DUO_0000010 = research-specific restrictions. This data use limitation indicates that use is limited to studies of a certain research type. e.g., cancer research in children.

To all intents and purposes, I think DUO_0000007 & DUO_0000010 are exactly the same...the only differences are i) The language used "is allowed" (DUO_0000007) versus "is limited to" ( DUO_0000010) ii) For DUO_0000007 the use of the data is very specific as it has to be used in conjunction with an ontology iii) DUO_0000010 however, is less specific/restrictive (maybe) as no ontology is required and free text can be used e.g., cancer research in children.

I guess we could consider deprecating DUO_0000010 in favor of DUO_0000007?