Irish Covid19 WGS Raw Reads

Data access and usage policy for Whole genome sequence datasets

  DATA ACCESS AGREEMENT:    These terms and conditions govern access to the managed access datasets (details of which are set out in Appendix I) to which the User Institution has requested access. The User Institution agrees to be bound by these terms and conditions.     In signing this agreement, You are agreeing to be bound by the terms and conditions of access set out in this agreement.    For the sake of clarity, the terms of access set out in this agreement apply both to the User and the User’s Institution (as defined below). User Institution and User are referred to within the agreement as “You” and “Your” shall be construed accordingly.      Definitions:    Authorised Personnel: The individuals at the User Institution to whom Dr. Ross Mc Manus (DAC contact person) grants access to the Data. This includes the User and the individuals listed in Appendix II and any other individuals for whom the User Institution subsequently requests access to  (and is approved for access to) the Data. Details of the initial Authorised Personnel are set out in Appendix II.    Data: all and any human genetic data obtained for the project.    Data Providers: St. James Hospital, Tallagh Univeristy Hospital, and TTMI, School of Medicine, Trinity College Dublin, University of Dublin (STTAR Bioresourse) and the collaborators listed in Appendix I responsible for the development, organisation, and oversight of these Data.    External Collaborator: A collaborator of the User, working for an institution other than the User Institution.    Project: The research study for which the User Institution has requested access to these Data. A description of the Project is set out in Appendix II.    Publications: Includes, without limitation, articles published in print journals, electronic journals, reviews, books, posters and other written and verbal presentations of research.    Research Participant: An individual whose data (clinical, demographic, genomics, transcriptomics) form part of these Data.    Research Purposes: Shall mean research that is seeking to advance the understanding of genetics and genomics, including the diagnosis and treatment of disorders, and work on statistical methods that may be applied to such research.    User: User means a researcher whose User Institution has previously completed this Data Access Agreement and has received acknowledgement of its acceptance.     User Institution(s): means the organisation at which the User is employed, affiliated or enrolled.  Terms and Conditions:    1. The User and User Institution agrees to only use these Data for the purpose of the Project (described in Appendix II) and only for Research Purposes. The User Institution further agrees that it will only use these Data for Research Purposes which are within the limitations (if any) set out in Appendix I and the data or outcome of the results should not be released as products for sale or for any commercial purpose. Use of the data for a new purpose or project will require a new application and approval from User and User institute.    2. The User Institution agrees to preserve, at all times, the confidentiality of these Data. In particular, it undertakes not to use, or attempt to use these Data to compromise or otherwise infringe the confidentiality of information on Research Participants. Without prejudice to the generality of the foregoing, the User Institution agrees to use at least the measures set out in Appendix I to protect these Data.     3. The User and User Institution agrees to protect the confidentiality of Research Participants in any research papers or publications that they prepare by taking all reasonable care to limit the possibility of identification.    4. The User Institution agrees not to link or combine these Data to other information or archived data available in a way that could re-identify the Research Participants, even if access to that data has been formally granted to the User Institution or is freely available without restriction.    5. The User Institution agrees only to transfer or disclose these Data, in whole or part, or any results derived from these Data, to the Authorised Personnel. Should the User Institution wish to share these Data with an External Collaborator, the External Collaborator must complete a separate application for access to these Data.    6. The User Institution agrees that the Data Providers, : a) make no warranty or representation, express or implied as to the accuracy, quality or comprehensiveness of these Data; b) exclude to the fullest extent permitted by law all liability for actions, claims, proceedings, demands, losses (including but not limited to loss of profit), costs, awards damages and payments made by the User Institution that may arise (whether directly or indirectly) in any way whatsoever from the User Institution’s use of these Data or from the unavailability of, or break in access to, these Data for whatever reason and; c) bear no responsibility for the further analysis or interpretation of these Data.  7. The User Institution agrees to follow the Fort Lauderdale Guidelines (http://www.wellcome.ac.uk/stellent/groups/corporatesite/@policy_communications/documents/web_document/wtd003207.pdf ) and the Toronto Statement (http://www.nature.com/nature/journal/v461/n7261/full/461168a.html). This includes but is not limited to recognising the contribution of the Data Providers and including a proper acknowledgement in all reports or publications resulting from the use of these Data.    8. The User Institution agrees to follow the Publication Policy in Appendix III. This includes respecting the moratorium period for the Data Providers to publish the first peer-reviewed report describing and analysing these Data.    9. The User Institution agrees not to make intellectual property claims on these Data and not to use intellectual property protection in ways that would prevent or block access to, or use of, any element of these Data, or conclusion drawn directly from these Data.    10. The User Institution agrees not to transfer or disclose the Data, in whole or part, or any identifiable material derived from the Data, to others, except as necessary for data/safety monitoring or programme management. If you wish to share the Data with a collaborator outwith the same Institution, the third party must make a separate application for access to the Data.    11. The User Institution agrees to destroy/discard the Data held, once it is no longer required for the Project, unless obliged to retain the Data for archival purposes in conformity with national and or international audit or legal requirements. Such requirements shall be disclosed to the User institution and shall be considered with regards to the retention term to be agreed by the User Institution and documented in Appendix 1 to this Agreement.    12. The User Institution will notify DAC contact person within 30 days of any changes or departures of Authorised Personnel.     13. The User Institution will notify DAC contact person at least 30 days prior to any significant changes to the protocol for the Project and only if agreed by DAC contact person, User and User Institution can proceed further.    14. The User Institution will notify DAC contact person as soon as it becomes aware of a breach of any of the terms or conditions of this agreement.    15. The Data Provider may terminate this agreement by written notice to the User Institution. If this agreement terminates for any reason, the User Institution will be required to destroy any Data held, including copies and backup copies. This clause does not prevent the User Institution from retaining these data for archival purpose in conformity with audit or legal requirements.    16. The User Institution accepts that it may be necessary for the Data Providers to alter the terms of this agreement from time to time. In the event that changes are required, the Data Providers or their appointed agent will contact the User Institution to inform it of the changes and the User Institution may elect to accept the changes or terminate the agreement.    17. If requested, the User Institution will allow data security and management documentation to be inspected by the Data Provider to verify that it is complying with the terms of this Agreement.    18. The User Institution agrees to distribute a copy of these terms to the Authorised Personnel. The User Institution will procure that the Authorised Personnel comply with the terms of this Agreement.    19. You accept that Data will be reissued from time to time, with suitable versioning. If the reissue is at the request of sample donors and/or other ethical scrutiny, You will destroy earlier versions of the Data.    20. This Agreement (and any dispute, controversy, proceedings or claim of whatever nature arising out of this agreement or its formation) shall be construed, interpreted and governed by the laws of Ireland and shall be subject to the exclusive jurisdiction of the Irish courts.     21.You accept that the Data is protected by and subject to international laws, including but not limited to the GDPR regulation for research, and that You are responsible for ensuring compliance with any such applicable law. The Data Access Committee reserves the right to request and inspect data security and management documentation to ensure the adequacy of data protection measures in countries that have no national laws comparable to that which pertain in the EAA.