POLICIES

Data Sharing Agreement 

An intermediary portal like DNAnexus will act on behalf of POLARIS to accept all de-identified cohort-level variant data and its phenotypic meta-data generated externally (genotype, phenotypes, annotations, etc.) for the CHORUS.

The submitting institution must have the authority to share the data they submitted with CHORUS and results with other researchers. The submitting institution may withdraw their dataset from the CHORUS at any point of time by notifying CHORUS administrators. The CHORUS administrators will withdraw the dataset within 5 working days from the notification date.  However, results that have already been shared with other researchers cannot be withdrawn.

The contributed data will never be shared with Portal users; only allele frequencies of the matching criteria (chromosome, position and reference allele and alternate allele) will be shared. The cohort-level summary data will reside in one or several data vaults accessible only to a neutral party like DNAnexus administrator. User-activated querying modules will be deployed behind the vault to query the CHORUS database. The purpose of the CHORUS will be to enable broad access to the allele frequencies of genetic studies of various cohorts. DNAnexus is an interface that provide access to results in a form designed to meet user needs while maintaining the data privacy requirements, and will engage Portal users in assessing the value of these features.
 

Policies for Data Release

Data release timeline:

 

Accessing the Portal and Terms of Conduct

The following polices are listed on the Portal and each user who logs on will be required to read these terms and click an acknowledgement of conduct before accessing the Portal:

User registration

To access the Portal, users must obtain an account from DNAnexus, which will be used for data uploading/downloading and executing of querying applet purposes (see below).

Data use and availability

All users are welcome to use the allele frequency with the results from query of the CHORUS to further their research without seeking explicit permission from the CHORUS team. Users are also welcome to cite data in scientific publications, provided that they cite CHORUS as the source. If users are citing a single dataset represented in the CHORUS, they should cite both the Portal and the relevant paper for that dataset (if one has been published).

User Responsibilities

Portal users are expected to abide by the following provisions on data use:

1.                   Users will not attempt to download any dataset in bulk from the Portal

2.                   Users will not attempt to identify or contact research participants

3.                   Users will protect data confidentiality

4.                   Users will not share any of the data with unauthorized users

5.                   Users will report any inadvertent data release, security breach, or other data  

                      management incidents of which they become aware

6.                   Users will abide by all applicable laws and regulations for handling genomic data

 

For Contributors 

1.                  Contributors should have the authority to share their dataset.

2.                  Contributor can withdraw their dataset at any time.

3.                  Results once shared with users cannot be withdrawn.

4.                  All datasets are accessible to all CHORUS users.

Agreeing to these provisions is a requirement of Portal use. Violating them may result in an  investigation and sanctions  including revocation of access to the Portal.

Disclaimer :
No warranties, express or implied, are offered as to the merchant ability or fitness for any purpose of the data and aggregate data provided under this agreement. There are no warranties or representations as to the purity, accuracy, safety or usefulness of the data or that the use of the data will not infringe any patent or other proprietary right. Unless prohibited by law, Recipient assumes all liability for claims for damages against it by third parties arising from the Recipient’s use of the Data except when such claims are caused by the gross negligence or wilful misconduct of Provider

A PDF copy of the policy for review is available here