WGS

Data Access Policy Including For-Profit Researchers

Data Access Agreement (For-Profit Researcher) This Data Access Agreement (“Agreement”) governs the terms on which access will be granted to the sequencing data generated within the KiCS Program. 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 this Agreement as “You” and “Your” shall be construed accordingly. Definitions: KiCS means the SickKids Cancer Sequencing (KiCS) Program, developed by The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8, Canada (“SickKids”). Data means all and any human genomic data obtained from KiCS. Data Subject means a person, who has been informed of the purpose for which the Data is held and has given his/her informed consent thereto. User means a researcher whose User Institution has previously completed this Data Access Agreement and has received acknowledgement of its acceptance. User Institution means an institution that may or may not be funded by, or in collaboration with, a for-profit company. Publications means, without limitation, articles published in print journals, electronic journals, reviews, books, posters and other written and verbal presentations of research performed using the Data. User Institution means the organisation at which the User is employed, affiliated or enrolled. Terms and Conditions: In signing this Agreement: 1. You agree to use the Data only for the advancement of medical research in accordance with the approved proposal that you submitted unless otherwise required by law. 2. You agree not to use the Data for the creation of products for sale or for any commercial purpose, without the prior negotiation of a commercial license with SickKids. 3. You agree to preserve, at all times, the confidentiality of information and Data pertaining to Data Subjects. In particular, you undertake not to use, or attempt to use the Data to compromise or otherwise infringe the confidentiality of information on Data Subjects and their right to privacy. You agree that you will not use the Data to re-identify any individual. 4. You agree not to attempt to link the Data provided under this Agreement to other information or archive data available for the data sets provided, even if access to that data has been formally granted to you, or it is freely available without restriction, without specific permission being sought from the relevant access committees. 5. You agree 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. Should you wish to share the Data with a collaborator, that third party must make a separate application for access to the Data. 6. You agree to use the Data for the approved purpose and project described in your application. Use of the Data for a new purpose or project will require a new application and approval. 7. 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. 8. You agree to abide by the terms outlined in the KiCS “Publications Policy”, as set out in Schedule 1. 9. You agree to submit a request for renewal of access every one (1) year after access is granted. 10. You accept that SickKids, KiCS, the original data creators, depositors or copyright holders, or the funders of the Data or any part of the Data supplied: a) bear no legal responsibility for the accuracy or comprehensiveness of the Data; and b) accept no liability for indirect, consequential, or incidental damages or losses arising from use of the Data, or from the unavailability of, or break in access to, the Data for whatever reason. 11. You understand and acknowledge that the Data is protected by copyright and other intellectual property rights, and that duplication, except as reasonably required to carry out your research with the Data, or sale of all or part of the Data on any media is not permitted. 12. You recognise that nothing in this Agreement shall operate to transfer to the User Institution any intellectual property rights relating to the Data. The User Institution has the right to develop intellectual property based on comparisons with their own data. 13. You accept that this Agreement will terminate immediately upon any breach of this Agreement by you and you will be required to destroy any Data held. 14. You accept that it may be necessary for SickKids, KiCS or its appointed agent to alter the terms of this Agreement from time to time in order to address new concerns. In this event, SickKids, KiCS or its appointed agent will contact you to inform you of any changes, and you agree that your continued use of the Data shall be dependent on the parties entering into a new version of the Agreement. 15. You agree that you will submit a report to SickKids or KiCS, if requested, on completion of the agreed purpose. KiCS agrees to treat the report and all information, data, results, and conclusions contained within such a report as confidential information belonging to the User Institution unless: (a) SickKids is required by law, court order or governmental regulation to disclose such report to a court or third party; (b) such report is in the public domain; or (c) You allow SickKids or KiCS to disclose such report to a third party. 16. You accept that the Data are protected by and subject to laws in various international jurisdictions, including without limitation laws in the EEA and Canada, and that you are responsible for ensuring compliance with any such applicable law. KiCS 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 EEA and Canada. 17. Any legal action, claim or other legal proceeding commenced by one party hereto against another party, arising out of this Agreement, shall be commenced in the courts of the jurisdiction in which the responding party is situated; and for the purposes of such proceeding, this Agreement shall be governed by, and shall be interpreted, construed and enforced, in accordance with the laws of that same jurisdiction. SCHEDULE 1 Publications Policy The primary purpose of the KiCS Program is to accelerate efforts to integrate Next Generation Sequencing (NGS) and/or “-omics” (eg: transcriptomics) into childhood cancer care, through the implementation and analysis of large-scale sequencing studies. Additional objectives include the development and validation of informatics and analytical solutions appropriate to the scale and nature of the project, as well as use of the data generated to answer important methodological and biological questions relevant to the generation, analysis and interpretation of sequencing data. KiCS anticipates that data generated from the project will be used by others, such as required for developing new analytical methods, in understanding patterns of germline and somatic variants and in guiding selection of genomic regions harbouring genes involved in cancer development. Authors who use data from the project must acknowledge the KiCS Program using the following wording "This study makes use of data generated by the SickKids Cancer Sequencing (KiCS) Program, including The Hospital for Sick Children (Toronto)." Users should note that KiCS bears no responsibility for the further analysis or interpretation of these data, over and above that published by KiCS.