Whole exome sequencing of Finnish hereditary breast cancer families

Finnish hereditary breast cancer study (EGAS00001001835)

Policy statement Definitions: GPCR refers to Genetic predisposition to cancer research group at the University of Tampere Data means any human genetic or clinical data provided by the GPCR Data Subject means a person to whom Data refers and 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 the organization at which the User is employed, affiliated or enrolled. Terms and Conditions: 1. You agree to use the Data only for the advancement of medical research, according to the consent obtained from sample donors. 2. 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. 3. 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 in the same Institution, the third party must make a separate application for access to the Data. 4. 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. 5. 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. 6. You agree to acknowledge in any work based in whole or part on the Data, the published paper from which the Data derives, the version of the data, and the role of GPCR and the relevant primary collectors and their funders. 7. You accept that the GPCR, 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. 8. 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. 9. 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. 10. 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. 11. You accept that it may be necessary for GPCR or its appointed agent to alter the terms of this agreement from time to time in order to address new concerns. In this event, IBT 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. 12. You accept that the Data is protected by and subject to international laws, including but not limited to the EU Data Protection Directive 1995 (officially Directive 95/46/EC), 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 European Economic Area. 13. This agreement shall be construed, interpreted and governed by the laws of Finland and shall be subject to the non-exclusive jurisdiction of the Finnish courts.