Data Access Committee

All submissions made to the EGA must be affiliated to a Data Access Committee (DAC)

 

A Data Access Committee (DAC) is a body of one or more named individuals who are responsible for data release to external requestors based on consent and/or National Research Ethics terms.

A DAC is typically formed, but not necessarily, from the same organization that collected the samples and generated any associated analyses.

Multiple datasets may be affiliated to a single DAC.

To establish a DAC at the EGA you must register the details of your DAC during the submission process to the EGA via either EGA Submitter Portal or DAC.xml. You will be required to provide a DAC name,name of the individual(s) that make up your DAC and contact details for your DAC including your Institutional email(s). Wherever possible the DAC should make sure that the first point of contact is readily available and able to answer any initial data requests/queries in < 2 weeks. As part of communications with us, please confirm who should be the main DAC contact and will, therefore, have their details displayed on relevant EGA pages.

All the necessary information you need to provide will be collected during the submission procedure.

The chosen name must be informative to the applicant.  For example, internal identifiers, such as grant numbers, should not be used. Individual PI names should also not be used. DAC's are often named after the organisation or department of the data source. 

Browse the full list of DAC names currently in the EGA.

Data Access Agreement 

Each dataset that is submitted to the EGA must be linked to a Data Access Agreement (DAA), which defines the terms and conditions of using the dataset, such as how the data files should be stored once downloaded or details of publication embargoes that should be observed by the approved user. As part of the Data Access Agreement, information regarding the application can be captured to help inform the DAC when making its decision. For example, requestors could be asked to provide a proposed title for their research and a proposal of how the data will be used. By asking for provision of such information the DAC can be assured that the requestor fully understands any consents associated with the data. It is important that accounts created at the EGA, are created solely for those individuals that will be downloading the data from the EGA. As part of the data access request, we strongly encourage you to identify individuals that will need an account at the EGA in order to prevent sharing of login details, which is strictly prohibited under EGA user account policy. Such information can easily be captured in the DAA.

NOTICE The data access agreement template below is provided for guidance only and should be adapted as you see fit to suit your own purpose. In the interest of promoting data sharing, we suggest that if an agreement cannot be met around clause 19 in this example that both parties should agree to remain silent, and that the clause should be removed from the agreement.

Example DAA

Where a DAC is requesting the creation of more than 5 accounts per month authorised DAC contacts may be provided with their own DAC admin tools in order to administer datasets upon request. These tools facilitate creation and management of new and existing EGA accounts allowing DAC's to administer their own datasets. If your DAC is requesting the creation of more than 5 user accounts per month and you would like access to the DAC admin tools please contact ega-helpdesk for further information.

DAC contacts named as part of the submission process must email ega-helpdesk themselves with the details of each successful applicant that requires an EGA account (incl. name, Institutional email address, Institutional details and datasets to be provided access to).  A Helpdesk Officer will then create the EGA accounts on behalf of the DAC. It should be noted, however; personal email addresses (e.g. Hotmail, Google, etc.) are not encouraged when creating EGA user accounts.

**THE EGA WILL NOT CREATE EGA ACCOUNTS FROM APPLICATION FORMS FORWARDED BY THE DAC NEITHER FROM FORWARDED APPROVAL EMAILS**

As guidance, the following are suggestions for what action a DAC might take upon receipt of a data access request: -

  • Aim to respond to all initial requests in < 2 weeks – anything longer than this may result in follow-up emails from the EGA, journals and ultimately dataset withdrawal
  • Firstly check that the data/EGAD number is consistent with your data submission i.e., they have contacted the correct DAC
  • Check that the user will be using the data within terms of consent, by asking them to sign up to the terms within the DAA
  • Check for an Institutional email address for the requestor *
  • Look for evidence of the requestor being “appropriately qualified/bona fide” for use of the data e.g., PubMed search, Research Gate, LinkedIn etc.
  • Check the affiliated organisation is real and that they are still working there
  • Check with the requestor about who should have accounts created at the EGA under the terms of the agreement
  • In the event that a negative decision is made we would expect that that this decision be promptly communicated to the requestor and supported by the terms of the Data Access Policy that the requestor has not or cannot meet

*It is considered best practice to try and release data to those with an Institutional email address. This gives re-assurances to EGA, research participants and the general public that an appropriate individual is accessing and using the data.

In the below short video, you can find a animation describing how you can authorize access to your sensitive data with the help of Data Access Committee and Authorization tool.