Human samples from Southern Chile

The Data Access Agreement is granted for human history studies, which respects indigenous cultures and minority groups. Researchers who ask access to the data must agree to the following: a) We will not use the data for medical studies on pathologies b) We will not use the data for commercial purposes c) We will not distribute the data to third parties d) We will not upload the data to databases with public access e) We will not attempt to connect genetic data to personal data f) We will use the data only for population history studies

DATA ACCESS AGREEMENT for the use of human genetic data published in the study “The genetic history of the southern Andes from present-day Mapuche ancestry” Arango-Isaza et al. 2023, Current Biology 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 or User Researcher has requested access. The User Institution or User Researcher agrees to be bound by these terms and conditions. The data covered by the current data access agreement come from people of indigenous ancestry from Southern Chile. They live either in traditional communities or in rural areas of the regions of Araucanía and of the island of Chiloé. Please bear in mind that these communities and their individuals (or their ancestors) have been maintained at the periphery, underrepresented in many aspects of their social, political, and economical life, and have suffered innumerable harms since the first arrival of Europeans to the Americas, to the establishment of national states in South America, and the incorporation of Amazonia, and its resources, in the dynamics of global market economies. Therefore, we ask researchers interested in using the data to acknowledge and respect indigenous identities and cultural context, in order to avoid causing any harm to participant individuals and communities. Research that uses this data should be oriented to the wellbeing of the people it represents. Definitions Authorised Personnel: The individuals at the User Institution to whom THE DATA ACCESS COMMITTEE registered in the European Genome Archive (EGA) with ID number: XXX 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 Authorised Personnel are set out in Appendix II. Data: The managed access datasets to which the User Institution has requested access. Data Producers: Chiara Barbieri and the collaborators at the University of Zurich and Pontificia Universidad Católica de Chile listed in Appendix I responsible for the development, organisation, 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. ************************** Dr. Chiara Barbieri University of Zurich Zurich, Switzerland And Department of Linguistic and Cultural Evolution, Max Planck Institute for Evolutionary Anthropology Leipzig, Germany Email: chiara.barbieri@uzh.ch | barbieri.chiara@gmail.com Terms and Conditions 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. 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. 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. 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. 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 Authorised 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 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) 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 recognising 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 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 analysing these Data. 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. 10. The User Institution cannot perform further research that would add intellectual and resource capital to these data and decide to obtain intellectual property rights on these downstream discoveries. 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. 12. The User Institution will notify Chiara Barbieri or other Data Producers collaborators within 30 days of any changes or departures of Authorised Personnel. 13. The User Institution will notify Chiara Barbieri or other Data Producers collaborators prior to any significant changes to the protocol for the Project. 14. The User Institution will notify Chiara Barbieri or other Data Producers collaborators as soon as it becomes aware of a breach of the terms or conditions of this agreement. 15. Chiara Barbieri or other Data Producers collaborators 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 purpose in conformity with audit or legal requirements. 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. 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. 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. 18. The User Institution agrees to distribute a copy of these terms to the Authorised Personnel. The User Institution will procure that the Authorised Personnel comply with the terms of this agreement. 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 European Convention on Human Rights (ECHR) and the laws of the countries where these data originated and were produced. Agreed for User Institution Signature: Name: Title: Date: Principal Investigator I confirm that I have read and understood this Agreement. Signature: Name: Title: Date: Agreed for Data Producer Signature: Name: Title: Date: APPENDIX I – DATASET DETAILS APPENDIX II ––PROJECT DETAILS APPENDIX III –– PUBLICATION POLICY APPENDIX I – DATASET DETAILS Dataset reference (EGA Study ID and Dataset Details) EGA ID: XXX Dataset containing human genome-wide SNP data from 64 participants of Native American descent from southern Chile. Name of project that created the dataset The genetic history of the southern Andes from present-day Mapuche ancestry Names of other data producers/collaborators Dr. Chiara Barbieri University of Zurich Zurich, Switzerland And Department of Linguistic and Cultural Evolution, Max Planck Institute for Evolutionary Anthropology Leipzig, Germany Email: chiara.barbieri@uzh.ch | barbieri.chiara@gmail.com Epifanía Arango-Isaza University of Zurich Zurich, Switzerland Email: epifania.arangoisaza@uzh.ch | epifaniarango@gmail.com Dr. Felipe Martinez Pontificia Universidad Católica de Chile Santiago de Chile, Chile Email: fmartinezl@uc.cl Specific limitations on areas of research In order to comply with the informed consent under which the samples were collected, research on the current data set is restricted to studies of population history. Therefore, researchers must agree to the following: a) We will not use the data for medical studies on pathologies b) We will not use the data for commercial purposes c) We will not distribute the data to third parties d) We will not upload the data to databases with public access e) We will not attempt to connect genetic data to personal data f) We will use the data only for population history studies Minimum protection measures required File access: Data can be held in unencrypted files on an institutional compute 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 screenlocks (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 EGA ID: XXX Dataset containing human genome-wide SNP data from 64 participants of Native American descent from southern Chile. 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 In any publications based on these data, the original publication Arango-Isaza et al. 2023 should be cited in the main references. 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., XXXX), and acknowledge its use in a form agreed by the User Institution with the Data Producers.