EBISPOT / DUO

Ontology for consent codes and data use requirements
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New Term Request: Commercial Use #62

Open MKonopko opened 4 years ago

MKonopko commented 4 years ago

New term requested: commercial use.

Per H3Africa feedback:

This data use category indicates that use is allowed for commercial purposes.

@mamanambiya could you please provide a use case for this?

mamanambiya commented 4 years ago

According to H3A ethics, if commercial use is not specifically mentioned as being allowed then it is not allowed. There is no DUO term currently that states if commercial use has been specified. Some texts we have seen in consent forms includes:

"... We would like to share your medical history, the results of your laboratory tests and your genetic information with researchers around the world .... Investigators from universities, hospitals or companies that manufacture and sell drugs could use these data."

"Other researchers and commercial users may have access to these samples for future unspecified use research after clearance with ethics committees and relevant authorities."

"If this research leads to commercial gains or commercial production, this will be jointly owned by the participating institutions. You will not be contacted about these developments."

"Quand nous partageons ces informations, nous le ferons avec un code et ces personnes ne sauront pas votre nom. Des investigateurs qui voudront utiliser vos données demanderont au préalable la permission à un groupe d’investigateurs. Ils auront besoin de dire à ces investigateurs comment ils programment utiliser ces données. Ces données pourraient être utilisées par des investigateurs des universités, des hôpitaux ou des compagnies qui fabriquent et vendent des médicaments. Les informations de cette étude seront données sans frais. Il existe une petite chance que ces données soient utilisées pour mettre au point de nouveaux médicaments. Si cela arrivait, rien n’est prévu pour partager des bénéfices avec vous. Si vous ne voulez pas que vos échantillons soient utilisés dans d’autres études de recherche, veuillez poser vos initiales ou cocher devant la ligne ci-dessous." (Neuro-Mali)

They will need to agree only to use the data for scientific research. The data could for example be used by scientists from universities, hospitals or from companies that make and sell medicines.

mcourtot commented 4 years ago

Call July 27 2020

JL: discussion around adding 'allowing' terms; in addition to 'forbidding' terms

NM: requirement from lawyers to be explicit, these need to be stated explicitly.

mcourtot commented 4 years ago

Proposal for group review: Add a comment on GRU to clarify "This includes research for commercial and non commercial purposes, by any kind of organisation. Your data may be used for therapeutic and diagnostic product development." Add same comment to HMB