Whole genome MeDIP-seq of DNA in whole blood samples from 5yr old Swedish children (the ABIS study)

DATA ACCESS AGREEMENT for ABIS-CDAC data

DATA ACCESS AGREEMENT for ABIS-CDAC dataOpening remarks:This text specify the policy, govern by the ABIS-CDAC (EGAC00001000281) data access committee, in how external users may grant access to sequencing and metadata associated with the committee, generated within the ABIS (All Babies in South East Sweden) project, and uploaded to EGA (European Genome-phenome Archive).Be aware that data files uploaded to EGA and controlled by ABIS-CDAC are protected from unauthorized usage by Swedish law. Anyone seeking access to the files needs the ABIS-CDAC approval, and must be in line with the Swedish ethical permits for the ABIS project. ABIS-CDAC contains the following members:Johnny Ludvigsson(johnny.ludvigsson@liu.se)Tomas Faresjö(tomas.faresjo@liu.se)Annika Thorsell(annika.thorsell@liu.se)Daniel Nätt(daniel.natt@liu.se)Data access may only be granted through a consensus in the ABIS-CDAC committee, where Johnny Ludvigsson and Tomas Faresjö are the keepers of the ethical permits for the ABIS project, while Annika Thorsell and Daniel Nätt are the genetic expertise.To apply for data access, contact any member of the ABIS-CDAC committee through the emails listed above. Only research (non-profit) stakeholders are considered.The agreement:In signing this agreement, You are agreeing to be bound by the terms and conditions of access set out in this agreement. For clarity, signing the agreement does not automatically means that a User will get access to the data. Access will be granted only after extensive review and approval by the ABIS-CDAC data access committee. Also 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 the agreement as “You” and “Your” shall be construed accordingly.Definitions:Data = all and any human genetic data obtained within the ABIS (All Babies in South East Sweden) project, and governed by the ABIS-CDAC (EGAC00001000281) data access committee. Data Subject = a person, or the legal guardian of a person, that has been informed of the purpose for which the Data is held and has given his/her informed consent there to. User = a researcher that are bound to the terms and conditions of this agreement and whose User Institution has previously completed this Data Access Agreement and has received acknowledgement of its acceptance. Publications = without limitation, articles published in print journals, electronic journals, reviews, books, posters and other written and verbal presentations of research. User Institution = the organization at which the User is employed, affiliated or enrolled. Terms and Conditions:In signing this Agreement1. You agree to use the Data only for the advancement of medical research, according to the consent obtained from sample donors (Data Subjects).2. You agree not to use the Data for the creation of products for sale or for any commercial purpose.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.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. 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 out with the same Institution, the 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 acknowledge in any Publication based in whole or part on the, the published paper from which the Data derives, the version of the data, and the role of the primary collectors and their funders. 9. You accept that 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. 10. 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.11. You recognize 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. 12. 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. 13. You accept that it may be necessary for the Consortium or its appointed agent to alter the terms of this agreement from time to time in order to address new concerns. In this event, the Consortium 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.14. You agree that you will submit a report to the members of the ABIS-CDAC Data Access Committee, if requested, on completion of the agreed purpose. The ABIS-CDAC Data Access Committee agrees to treat the report and all information, data, results, and conclusions contained within such report as confidential information belonging to the User Institution.15. You accept that the Data is protected by and subject to international and national laws, including but not limited to the Swedish Privacy Protection Law (Personuppgiftslag 1998:204), and that You are responsible for ensuring compliance with any such applicable law. The ABIS-CDAC 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 Swedish laws.16. You accept that the use of the Data is limited by the Swedish ethical permits held by members of the ABIS-CDAC Data Access Committee. Any violation of these permits by the User or User intuition is punishable by Swedish law. 17. This agreement shall be construed, interpreted and governed by the laws of Sweden and shall be subject to the non-exclusive jurisdiction of the Swedish courts.18. You accept that the Data, in whole or part, or any identifiable material derived from the Data, must be immediately destroyed if future Swedish laws, or interpretations of the current laws of Sweden (guided by for example a Swedish court decision or a legal recommendation of The Swedish Data Inspection Board), deems the use of the Data illegal or plausibly illegal. For and on behalf of User:Name of Applicant(s):------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------Signature of Applicant(s):------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------Date:----------------------------For and on behalf of User Institution:Signature of Institutional or Administrative Authority:------------------------------------------------------------------Print name:------------------------------------------------------------------User Institution:------------------------------------------------------------------Date:---------------------------------WHEN SUBMITTING THIS DOCUMENT, PLEASE INCLUDE ALL PAGES OF THE AGREEMENT WITH THIS SIGNATURE PAGE