Dataset consent types

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This data item indicates the type of consent for re-use and sharing, associated with the data, usually obtained at the beginning of the primary study. It is composite, consisting of a categorised response that indicates in broad terms the range of activities covered by the consent, plus additional boolean data items that can be used to indicate additional specific requirements, and a textual description of the consent that can be used to provide further detail. The main categories are:

id name description source
0 Not known No clear information available about consent for secondary use, or if any exists. ECRIN
1 No explicit consent No specific consent was given for the sharing of data or its re-use beyond the study in which it was originally collected. ECRIN
2 No restriction No explicit restriction in the consent documents, though a broad consent to re-use is assumed, or this category is meaningless. ECRIN
3 General research use Consent indicates that use is allowed for general research use for any research purpose. ECRIN
4 Health/medical/biomedical research Consent indicates that use is allowed for health/medical/biomedical purposes; does not include the study of population origins or ancestry, or the development of methods / algorithms (e.g. for ML) ECRIN
5 Disease-specific research Consent indicates that use, for health/medical/biomedical research is allowed provided it is related to a specified disease (area). The disease (area) must be named or coded in the associated comments field. ECRIN