Whole exome sequencing data of Hispanic hepatocellular carcinoma

Terms and conditions govern the access of the managed HCC dataset to which the User Institute agrees to adhere.

Data Access Policy 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 adhere to these terms and conditions. 1. Provider The University of Texas Health Science Center at San Antonio (UTHSCSA) Address: 7703 Floyd Curl Dr, San Antonio, TX, USA, 78229 (“Data Provider”) 2. User Definitions Authorized Personnel The individuals at the User Institution to whom UTHSCSA HCC Team 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 Producers: UTHSCSA HCC Team and the collaborators listed in Appendix I are 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. 3. Data Access 3.1. The 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. 3.2. 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. 3.3. The 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. 3.4. 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. 3.5. The User Institution agrees only to transfer or disclose these Data, in whole or part, or any material derived from these Data, to the Authorized 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. 3.6. 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, express or implied as to the accuracy, quality, or comprehensiveness of these Data; b) will be excluded to the fullest extent permitted by law from 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 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. 3.7. 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 recognizing the contribution of the Data Producers and including a proper acknowledgment in all reports or publications resulting from the use of these Data. 3.8. 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. 3.9. 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. 3.10. 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 intellectual property claims by the Data Producers and their funding agency. 3.11. The User Institution agrees to destroy/discard the Data held, once it is no longer used for the Project, unless obliged to retain the data for archival purposes in conformity with audit or legal requirements. 3.12. The User Institution will notify UTHSCSA HCC Team within 30 days of any changes or departures of Authorized Personnel. 3.13. The User Institution will notify UTHSCSA HCC Team prior to any significant changes to the protocol for the Project. 3.14. The User Institution will notify UTHSCSA HCC Team as soon as it becomes aware of a breach of the terms or conditions of this agreement. 3.15. UTHSCSA HCC Team 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 purposes in conformity with audit or legal requirements. 3.16. The User Institution accepts that it may be necessary for the Data Producers to alter the terms of this agreement from time to time. As an example, this may include specific provisions relating to the Data required by Data Producers other than UTHSCSA HCC Team. In the event that changes are required, the Data Producers 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. 3.17. If requested, the User Institution will allow data security and management documentation to be inspected to verify that it is complying with the terms of this agreement. 3.18. The User Institution agrees to distribute a copy of these terms to the Authorized Personnel. The User Institution will procure that the Authorized Personnel comply with the terms of this agreement. 3.19. 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 the United States, and they shall be subject to the exclusive jurisdiction of the US courts. APPENDIX I – DATASET DETAILS (to be completed by the data producer before passing to the applicant) Dataset reference (EGA Study ID and Dataset Details) The dataset has been deposited to EGA under the accession number EGASxxxxxxxxxxx. The dataset comprises whole exome sequencing (WES) data on Hepatocellular Carcinoma (HCC) and patient-matched non-tumor samples. Name of project that created the dataset Genomic characterization of hepatocellular carcinoma in Hispanic patients Names of data producers/collaborators UT Health Science Center at San Antonio: Dr. FRANCISCO G. CIGARROA Dr. LUZHE SUN Specific limitations on areas of research None. Minimum protection measures required Described below. File access Data can be held in unencrypted files on an institutional computing 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. Laptops holding these data should have password-protected logins and screen locks (set to lock after 5 min of inactivity). If held on USB keys or other portable hard drives, the data must be encrypted. APPENDIX II – PROJECT DETAILS (to be completed by the Requestor) 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 who 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 UTHSCSA HCC Team intends to publish the results of its analysis of this dataset and does not consider its deposition into public databases to be the equivalent of such publications. UTHSCSA HCC Team anticipates that the dataset could be useful to other qualified researchers for a variety of purposes. However, some areas of work are subject to a publication moratorium. The publication moratorium covers any publications (including oral communications) that describe the use of the dataset. For research papers, submission for publication should not occur until 24 months after these data were first made available on the relevant hosting database, unless UTHSCSA HCC Team has provided written consent to earlier submission. In any publications based on these data, please describe how the data can be accessed, including the name of the hosting database (e.g., The European Genome-phenome Archive at the European Bioinformatics Institute) and its accession numbers (e.g., EGASxxxxxxxx), and acknowledge its use in a form agreed by the User Institution with UTHSCSA HCC Team.