RNASeq read files of renal cell carcinoma PDX samples

Data Access Policy for managed access data sets deposited by EPO

DATA ACCESS POLICY This policy governs access to the managed access datasets deposited by EPO in the EGA to which the User Institution has requested access. The User Institution has to agree to be bound by the terms and conditions described herein and has to sign an appropriate Data Access Agreement. Preamble Genetic sequence data are a critical part of biomedical research. However, human genetic data can only be transferred if the privacy of research subjects is adequately protected. Individual genomic sequence data are sensible patient data and any attempt to re-identify such data is forbidden under any circumstances. The efforts to understand disease susceptibility or therapeutic opportunity require access to genomic data sets. Therefore, the special privacy challenges posed by genomic data are addressed with this data access policy by the EPO-GmbH as data producer. 1. The access requesting institution, hereinafter referred to as the User Institution agrees to solely use the data for the purpose of the intended project (described in the appropriate Data Access Agreement (DAA) to be signed) and only for research purposes. The User Institution further agrees that it will only use these data for the research purposes which are within the limitations (if any) set out in the DAA. 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 the individual to whom data refers (hereinafter referred to as Data Subject) and who has been informed of the purpose for which the Data is held and has given his/her informed consent thereto. Without prejudice to the generality of the foregoing, the User Institution agrees to use the measures for IT security set out in the DAA to adequately protect these data. 3. The User Institution agrees to protect the confidentiality of Data Subjects in any research papers or publications that they prepare by taking all reasonable care to exclude the possibility of re-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 Data Subjects, even if access to that data has been formally granted to the User Institution. 5. The User Institution agrees only to transfer or disclose these Data, in whole or part, or any material derived from these Data, to their own 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. 6. The User Institution agrees that the EPO-GmbH as data producer, 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) 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 (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 acknowledgement in all reports or publications resulting from the use of these Data. 8. 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 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. 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 policy. 18. The User Institution agrees to distribute a copy of this Data Access Policy to the authorized personnel involved in the project. The User Institution will procure that the authorized personnel comply with the terms of this policy.