DECIPHER - decipher

Grade: The grade for the resource as automatically determined by the criteria violations.; 1
Description: A full description of the resource from the resource itself, if possible.; DECIPHER is used by the clinical community to share and compare phenotypic and genotypic data. The DECIPHER database contains data from 24848 patients who have given consent for broad data-sharing; DECIPHER also supports more limited sharing via consortia.
Last curated: (Optional) The ISO 8601 date of when the resource was last curated.; 2017-10-12
Location: URL for the resource.; https://decipher.sanger.ac.uk
Source type: (Optional) How the resource relates to the data it contains. Current allowable entries are: "unknown", "repository", "source", "integrator", and "warehouse".; TBD
Curation status: Whether or not annotation is complete on this resource. Current allowable entries are: "complete", "incomplete", and "nonpublic".; complete
Field: The area of research for the resource.; biology
Type: The type of data the resource contains.; human
Categories: (Optional) Tags to describe the resource and its data.; gene
genotype
rare disease
phenotype
variant
submicroscopic chromosomal imbalance
rare sequence variants
Access: (Optional) Links to the resource's data.; None
License: The license that is used by the resource. We use SPDX where we can or: "inconsistent", "public domain", "unlicensed", "all rights reserved", or "custom".; custom
License type: The type of license that is being used. This will be to define compatible data pools in the future; we only use the grossest terms now. If it is not known "unknown" is used. Current possible values are: "unknown", "unlicensed", "copyleft", "permissive", "public domain", "copyright", "restrictive", or "private pool".; private pool
License location: (Optional) The link to the resource license.; https://decipher.sanger.ac.uk/datasharing
Focused curation: (Optional) Setting this flag to true indicates that the licensing was combinatorially complicated enough (as is the case in some commercial licenses) that the curator chose to wear a single "hat" during the process. From the site text: "While we try to cover as much of the licensing possibilities of a data resource that we can, in a few cases we may choose a particular "hat" to wear while evaluating to prevent a combinatorial explosion, which may also reduce the clarity of our curations for the community. In these cases, we may take on the role of a (1) non-commercial (2) academic (3) group that is (4) based in the US and trying to (5) create an aggregating resource, noting that other entities may have different results in the license commentary."; false
Issues: (Optional) Structured issues with the license. For every issue discovered with a resource, there should be a corresponding item in the license-issues field that marks the /exact/ violation, along with any comments. This field can be used by resources as the first step to improvement, as well as clarify any surrounding circumstances. Any issues or thoughts about a resource that do not slot into one of the criteria violations can go into the license-commentary field.; Criteria A.2.2: The resource uses an extensive custom license.
Criteria B.1: There are terms that require possible audits in the future, making future free use something that needs to be negotiated.
Criteria C.1: This could not be evaluated as no description of access was found.
Criteria C.2: This could not be evaluated as no description of access was found.
Criteria D.1.2: Given the numerous restrictions and requirements (e.g. purging, forced QA), it seems that downstream reuse would be problematic, even though there is a carve-out for "research".
Criteria E.1.2: Given the numerous restrictions and requirements (e.g. only "registered" users can have access to the data, etc.), it seems that downstream reuse would be problematic, even though there is a carve-out for "research".
Commentary: (Optional) Further commentary on the license, possibly including the though process of the curations and things like locations of additional licenses.; • We are evaluating the bulk data access agreement, rather than the data display agreement, which specifically prevents any type of bulk (re)use.
• While there are a few data files available at https://decipher.sanger.ac.uk/downloads/data , given the workding and context of the agreement, we believe that this is some other miscellaneous data.
• Data access is mediated through the Data Access Agreement: https://decipher.sanger.ac.uk/files/pdfs/daa.pdf and becoming a registered user.
• A written request is required to be submitted and approved before accessing the data.
• The DAA requires that accepted users: can only use data for research, cannot attempt to uncloak PII, must have proactive data security, must adhere to Data Protection Act 1998, may only share data with others who have agreed to these terms, allow GRL to do audits, accept required reporting of errors, destroy earlier data versions on update, as well as other (somewhat more "standard") terms.
• This seems like a "closed pool" type, even though is may just have one member, due to the use of "registered users" in the license.
• Additional terms of use in citation policy: "Authors who use data from the project must acknowledge DECIPHER using the following wording..."
Controversial: (Optional) Marker noting that there was some extended internal discussion or controversy about the evaluation of the licensing terms. If this is marked at "true", the controversy, or a link to a permanent archive of the controversy, must be sufficiently contained in the "license-commentary" to reconstruct the issues.; false
Contacts: (Optional) Resource contact information, link, email, or whatever is public.; decipher@sanger.ac.uk
Grants: (Optional) Semi-structured list of supporting grants.; Funding for the project was provided by the Wellcome Trust.