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 stemming from the consent, together with 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 |