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 |
The additional requirements that can be recorded are:
- Non-commercial research only?: Additional restriction limits to research carried out by non-commercial agencies.
- Geographical restrictions?: Research must be carried out in a specified geographical area. The areas must be specified in the associated comments field.
- Specified research types?: Research must be of a particular type or types. The types must be specified in the associated comments field.
- Genetic studies only?: Use is limited to genetic studies only (i.e. no phenotype-only research).
- No general methods research?: Indicates that use includes methods development research (e.g., development of software or algorithms) only within the bounds of other use limitations
