WXS and RNA-seq raw sequence data for TG project

KCP Policy

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. Definitions Authorized Personnel: The individuals at the User Institution to whom the Data Generating Institution or their representative grants access to the Data. This includes the User, the individuals listed in Appendix II and any other individuals for whom the User Institution subsequently requests access to the Data. Details of the initial Authorized Personnel are set out in Appendix II. Data: The managed access datasets to which the User Institution has requested access. Data Generating Institution: Institution owning the Data released onto the archive. Data Generating Institution Representative: Individual authorized to approve requests to use these data. At present, this individual is Alana Christie (alana.christie@utsouthwestern.edu). Data Producers: James Brugarolas and the collaborators listed in Appendix I responsible for the development, organization, and oversight of these Data. External Collaborator: A collaborator of the User, working for an institution other than the User Institution. Project: The project 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 form part of these Data. Research Purposes: Shall mean research that is seeking to advance the understanding of genetics and genomics, including the treatment of disorders, and work on statistical methods that may be applied to such research. User: The principal investigator for the Project. User Institution(s): The Institution that has requested access to the Data. This refers to the Institution(s) to which the User is affiliated to at the time of the request. User Institution details here: 1. The User Institution agrees to only use the 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. 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 a minimum the measures set out in Appendix I to protect these Data. 3. The User Institution assumes responsibility (and liability) for the protection of the confidentiality of Research Participants in any publications that are prepared by Users. This applies even after the Users have left the Institution. 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 to maintain any local copy of these data exclusively on Institutional Desktop computers with the precautions set forth in Appendix I. Under no circumstances will these data be transferred to laptop computers (including institutional computers), or copied onto USB drives (even if encrypted). Only those individuals listed in the agreement will be given access to the Data. The Data will not be shared with other individuals whether Internal or External Collaborators. Under no circumstances will the Data be re-uploaded into another Database or released, even partially. Should the User Institution wish to share these Data with other Collaborators, they must complete a separate application for access to these Data. 6. The User Institution agrees that the Data Producers, and all other parties involved in the creation, funding or protection of these Data: a) make no warranty or representation, expressed 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 Recipient that may arise (whether directly or indirectly) in any way whatsoever from the Recipient’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 (https://wellcome.ac.uk/sites/default/files/wtd003207_0.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 Producers 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 Producers to publish the first peer-reviewed report describing and analyzing 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 can elect to perform further research that would add intellectual and resource capital to these Data and decide to obtain intellectual property rights on these downstream discoveries. In this case, the User Institution agrees to implement licensing policies that will not obstruct further research and to follow the U.S. National Institutes of Health Best Practices for the Licensing of Genomic Inventions (2005) (https://www.icgc.org/files/daco/NIH_BestPracticesLicensingGenomicInventions_2005_en.pdf ) in conformity with the Organization for Economic Co-operation and Development Guidelines for the Licensing of the Genetic Inventions (2006) (http://www.oecd.org/science/biotech/36198812.pdf ). 11. The User Institution agrees to destroy/discard any local copies of the Data held, once the Project described in this agreement is completed or 5 years from the date of acquisition, whichever comes first. 12. The User Institution will notify the Data Generating Institution Representative within 30 days of any changes or departures of Authorized Personnel. 13. Any significant changes to the protocol for the Project will require a written authorization from the Data Generating Institution Representative prior to utilizing these data. 14. The User Institution will notify Data Generating Institution Representative as soon as it becomes aware of a breach of the terms or conditions of this agreement. 15. The Data Generating Institution Representative may terminate this agreement by written notice to the User Institution at any time. The User Institution agrees to destroy any data, including copies and backup copies, within 5 business days of this notification. 16. The User Institution accepts responsibility for compliance with any changes to the terms of this agreement set forth by the Data Generating Institution. The User Institution may elect to accept the changes or terminate the agreement. 17. The User Institution agrees to allow data security and management documentation to be inspected by the Data Generating Institution to verify that it is complying with the terms of this agreement. Full legal name and contact information for the IT Director: 18. The User Institution is responsible for distributing a copy of these terms to all Authorized Personnel. The User Institution assumes responsibility for the compliance of Authorized Personnel with the terms of this agreement. 19. 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 England and Wales and shall be subject to the exclusive jurisdiction of the English courts. Agreed for User Institution Signature: Name: Title: Date: Principal Investigator, User Institution I confirm that I have read and understood this Agreement. Signature: Name: Title: Date: Agreed for Alana Christie Signature: Name: Alana Christie Title: Kidney Cancer Program Co-Leader, Biostatistics Date: Agreed for UTSW authorized official Signature: Name: Title: Date: APPENDIX I – DATASET DETAILS APPENDIX II ––PROJECT DETAILS APPENDIX III –– PUBLICATION POLICY APPENDIX I – DATASET DETAILS Specific limitations on areas of research Under no conditions will the Data be used in ways that can lead to the identification of the Research Subjects. Use is restricted to academic institutions. Minimum protection measures required • The data should be accessed only by the persons listed in this agreement. • The data should be stored on a computer system of the User Institution behind the network firewall and the network to which the computer system storing data is connected should not be exposed to the public internet. • All users applying for data access have to have completed training to ensure compliance with the Health Insurance Portability and Accountability Act. File access • Data can be kept in unencrypted files on an institutional computer system, with Unix user group read/write access for one or more appropriate groups but not Unix world read/write access behind a secure firewall. • It is not allowed to download the data to Laptops, USB drives or portable hard drives. File release • The Data cannot be distributed to any third parties or reuploaded on any database or resource. At the completion of the project or 5 years, whichever comes first, all the Data will be deleted from all computer and backup systems. Additionally, if all approved users leave the institution, the data will be deleted within 30 days APPENDIX II – PROJECT DETAILS (to be completed by the User Institution) Details of dataset requested i.e., EGA Study and Dataset Accession Number Brief abstract of the Project in which the Data will be used (500 words max) All Individuals at the User Institution to be named as registered users Name of Registered User Email Job Title Supervisor* All Individuals that should have an account created at the EGA Name of Registered User Email Job Title APPENDIX III – PUBLICATION POLICY All publications (including oral communications) using the Data (or any portion thereof) subject to this agreement will be provided to the Data Generating Institution Representative at least 15 business days prior to submission. Any publications utilizing these data should acknowledge the publication first describing the data and should refer to this and no other archive/accession number for Data Access. Under no circumstances will the Data be submitted even in part to another archive resource.