The Ashkenazi Genome Consortium: Phase I

THE ASHKENAZI GENOME CONSORTIUM - DATA ACCESS AGREEMENT

This agreement governs the terms on which access will be granted to the genotype data generated by the Ashkenazi Genome Consortium. In signing this agreement, You are agreeing to be bound by the terms and conditions of access set out in this agreement. 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: Consortium means The Ashkenazi Genome Consortium, a group of investigators, listed in the appendix. Data means all and any human genetic data obtained from the Consortium. Data Subject means a person, 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. Publications means, without limitation, articles published in print journals, electronic journals, reviews, books, posters and other written and verbal presentations of research. User Institution means the organization at which the User is employed, affiliated or enrolled. Terms and Conditions: In signing this Agreement: 1.You agree to use the Data only for the advancement of research, according to the consent obtained from sample donors.2.You agree not to use the Data or any part thereof 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 the Data pertaining to the 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 identifiable information or archive data available for the Data Subjects provided, even if access to that data has been formally granted to you, or it is freely available without restriction, without specific permission being sought from the relevant access committees.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 program management. Should You wish to share the Data with a collaborator outside 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. A new purpose includes, but not limited to, studying a disease, cohort, or sequencing/genotyping strategy not explicitly specified in the Data Access Form.7.You agree that any use of the Data for studies directly competing with TAGC investigators would be done in collaboration with the relevant investigator(s). Research interests of TAGC investigators that are protected by this mechanism are listed in the “protected research interests” column in the Table shown in Schedule 1.8.You agree not to use the Data for the stigmatization, defamation, or denigration of any ethnic or cultural group. You agree to comply with the standards of scientific inquiry and integrity if using the Data to pursue questions of potential political or cultural sensitivity.9.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.10.You agree to abide by the terms outlined in the Consortium 'Publications Policy' as set out in Schedule 2.11.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 the Consortium and the relevant primary collectors and their funders. Suitable wording is provided in the Publications Policy given in Schedule 2.12.You accept that the Consortium, 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.13.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.14.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. 15.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. 16.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. 17.You agree that you will submit a report to the Consortium Data Access Committee, if requested, upon completion of the agreed purpose. The Consortium 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. 18.You accept that the Data is protected by and subject to international laws, including but not limited to the US Health Insurance Portability and Accountability Act of 1996, and that You are responsible for ensuring compliance with any such applicable law. The Consortium 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 EAA. 19.This agreement shall be construed, interpreted and governed by the laws of New York States and the United States and shall be subject to the non-exclusive jurisdiction of US courts.