Somatic variants in 344 colorectal cancer samples

Data access policy for somatic variants in colorectal cancer

DATA ACCESS AGREEMENT (“Agreement”) This Agreement is made by and between the following parties: University of Helsinki (“UH”), Faculty of Medicine, Research Programs Unit Business ID: FI0313471-7 Address: Yliopistonkatu 3 (P.O. Box 4) 00014 University of Helsinki, Finland and [NAME OF RECIPIENT] (“User Institution”) Business ID / similar: [ADD NUMBER] Address: [ADD ADDRESS] 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 has requested access. The User Institution agrees to be bound by these terms and conditions. 1. Definitions Authorized Personnel: The individuals at the User Institution to whom UH 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 Authorized Personnel are set out in Appendix II. Data: The managed access datasets to which the User Institution has requested access. Data may include personal data as defined in the EU General Data Protection Regulation (2016/679) (“GDPR”). Data Producers: UH and the collaborators listed in Appendix I responsible for the development, organization, 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: non-commercial 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 at the User Institution   2. Terms and Conditions 2.1. 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. 2.2. The User Institution agrees to use all reasonable efforts 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. 2.3. The User Institution agrees to use reasonable efforts to protect the confidentiality of Research Participants in any research papers or publications that they prepare by taking reasonable care to limit the possibility of identification. 2.4. 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. 2.5. The User Institution agrees only to transfer or disclose these Data, in whole or part, or any material derived from these Data, to the 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. 2.6. 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. Notwithstanding the above, the User Institution will not be responsible for claims arising from or related to the negligence or willful misconduct of the Data Producers, other parties involved in the creation, funding or protection of these Data, or their officers, agents or employees, or any person or entity not subject to User Institution’s supervision or control. 2.7. The User Institution agrees to follow the Fort Lauderdale Guidelines (attached as Appendix IV) and the Toronto Statement (as attached in Appendix III). 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. 2.8. 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 analyzing these Data. 2.9. 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. 2.10. 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 non-commercial research and to follow the U.S. National Institutes of Health Best Practices for the Licensing of Genomic Inventions (2005) (attached as Appendix V ) in conformity with the Organisation for Economic Co-operation and Development Guidelines for the Licensing of the Genetic Inventions (2006) (attached as Appendix VI). 2.11. 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. 2.12. The User Institution will notify UH within 30 days of any changes or departures of Authorized Personnel. 2.13. The User Institution will notify UH prior to any significant changes to the protocol for the Project. 2.14. The User Institution will promptly notify UH should it become aware of a breach of the terms or conditions of this agreement. 2.15. Either Party may terminate this agreement for any reason by provided thirty (30) days prior written notice to the other Party. If this agreement terminates for any reason, the User Institution will be required to destroy any Data held, including copies and backup copies. The User Institution accepts that it may be necessary for the Data Producers to alter the terms of this agreement from time to time. 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. Any such changes shall be implemented upon execution of a dually signed amendment to this Agreement. 2.16. If requested, upon advance written notice, and to the extent necessary, during mutually agreeable normal administrative business hours 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. Any such visits shall be scheduled in coordination with User Institution, and shall be subject to compliance with User Institution’s reasonable measures for confidentiality, safety and security, and shall also be subject to compliance with generally applicable premises rules at User Institution. 2.17. The User Institution agrees to distribute a copy of these terms to the Authorized Personnel. The User Institution will require that the Authorized Personnel comply with the terms of this agreement. 2.18. The User Institution understands that upon receipt of the Data that includes or constitutes Personal Data, it will become a data controller as meant in the General Data Protection Regulation (2016/679) (“GDPR”). 2.19. IF THE USER INSTITUTION IS NOT LOCATED WITHIN THE EEA / A COUNTRY WITH AN ADEQUACY DECISION: As a data controller, the User Institution shall comply with, the terms and conditions set out in the Controller-Controller Standard Contractual Clauses appended to this Agreement as Appendix VII. In case of discrepancy between the provisions of Appendix VII and any other document included in this Agreement and/or its appendices, the provision included in Appendix VII shall prevail. 2.20 UH or its representative may at any moment inform the User Institution of a Research Participant withdrawing their consent or exercising their rights as a data subject under the GDPR. The User Institution shall perform all actions necessary in order to fulfil the rights of the Research Participant. 2.21 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 laws of Finland and shall be subject to the exclusive jurisdiction of the Finnish courts. 2.22 This Agreement may be executed in counterparts, each and every one of which shall be deemed an original and all of which together shall constitute one and the same instrument. Each party may execute the Agreement in Adobe Portable Document Format (PDF) sent by electronic mail or as otherwise agreed between the parties. PDF signatures of authorised signatories of the parties shall be deemed to be original signatures, shall be valid and binding upon the parties, and, upon delivery, shall constitute due execution of this Agreement. [THE REMAINDER OF THIS PAGE REMAINS BLANK] [SIGNATURES ON FOLLOWING PAGES] 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 University of Helsinki Signature: Name: Title: Date: UH Principal Investigator I confirm that I have read and understood this Agreement. Signature: Name: Title: Date: APPENDICES: APPENDIX 1 – DATASET DETAILS APPENDIX 2 – PROJECT DETAILS APPENDIX 3 – 3.1. PUBLICATION POLICY & 3.2. TORONTO STATEMENT 3.3. FORT LAUDERDALE GUIDELINES 3.4. BEST PRACTICES FOR THE LICENSING OF GENOMIC INVENTIONS 3.5. OECD GUIDELINES FOR THE LICENSING OF GENETIC INVENTIONS IF APPLICABLE: APPENDIX 4 –– STANDARD CONTRACTUAL CLAUSES, CONTROLLER - CONTROLLER   APPENDIX 1 – DATASET DETAILS 1. Dataset reference (EGA Study ID and Dataset Details) EGAS00001004710 2. Name of project that created the dataset Genome-wide somatic variants in colorectal cancer (GRCh38) 3. Names of other data producers/collaborators None. 4. Specific limitations on areas of research Limitations as described in the data access agreement. 5. 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. Information Security: Insofar as the Data in question constitutes personal data as defined in the GDPR, the User Institution shall maintain an appropriate level of information security in accordance with the provisions of the GDPR, taking into account that the Data may include data that constitute special category data under Article 9 of the GDPR.   APPENDIX 2 – PROJECT DETAILS 1. Details of dataset requested i.e., EGA Study and Dataset Accession Number [Add details specified above] 2. Brief abstract of the Project in which the Data will be used (500 words max) [Add abstract] 3. All Individuals who the User Institution to be named as registered users Name of Registered User Email Job Title Supervisor* 4. All Individuals that should have an account created at the EGA Name of Registered User Email Job Title   APPENDIX 3 – ADDITIONAL REQUIREMENTS Appendix 3.1. Publication policy UH intend to publish the results of their analysis of this dataset and do not consider its deposition into public databases to be the equivalent of such publications. UH anticipate that the dataset could be useful to other qualified researchers for a variety of purposes. However, some areas of work are subject to a publication moratorium. The publication moratorium covers any publications (including oral communications) that describe the use of the dataset. For research papers, submission for publication should not occur until six months after these data were first made available on the relevant hosting database, unless UH has provided written consent to earlier submission. In any publications based on these data, 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., EGAS00000000029), and acknowledge its use in a form agreed by the User Institution with UH.   EUROPEAN COMMISSION DIRECTORATE-GENERAL JUSTICE Directorate C: Fundamental rights and Union citizenship Unit C.3: Data protection ________________________________________ Commission Decision C(2004)5721 SET II Standard contractual clauses for the transfer of personal data from the Community to third countries (controller to controller transfers) Data transfer agreement between University of Helsinki, Faculty of Medicine, Research Programs Unit (name) Yliopistonkatu 4 (P.O Box 3), 00014 University of Helsinki, Finland (address and country of establishment) hereinafter “data exporter” and ADD NAME OF RECIPIENT (name) ADD ADDRESS AND COUNTRY OF RECIPIENT (address and country of establishment) hereinafter “data importer” each a “party”; together “the parties”. Definitions For the purposes of the clauses: a) “personal data”, “special categories of data/sensitive data”, “process/processing”, “controller”, “processor”, “data subject” and “supervisory authority/authority” shall have the same meaning as in Directive 95/46/EC of 24 October 1995 (whereby “the authority” shall mean the competent data protection authority in the territory in which the data exporter is established); b) “the data exporter” shall mean the controller who transfers the personal data; c) “the data importer” shall mean the controller who agrees to receive from the data exporter personal data for further processing in accordance with the terms of these clauses and who is not subject to a third country’s system ensuring adequate protection; d) “clauses” shall mean these contractual clauses, which are a free-standing document that does not incorporate commercial business terms established by the parties under separate commercial arrangements. The details of the transfer (as well as the personal data covered) are specified in Annex B, which forms an integral part of the clauses. I. Obligations of the data exporter The data exporter warrants and undertakes that: a) The personal data have been collected, processed and transferred in accordance with the laws applicable to the data exporter. b) It has used reasonable efforts to determine that the data importer is able to satisfy its legal obligations under these clauses. c) It will provide the data importer, when so requested, with copies of relevant data protection laws or references to them (where relevant, and not including legal advice) of the country in which the data exporter is established. d) It will respond to enquiries from data subjects and the authority concerning processing of the personal data by the data importer, unless the parties have agreed that the data importer will so respond, in which case the data exporter will still respond to the extent reasonably possible and with the information reasonably available to it if the data importer is unwilling or unable to respond. Responses will be made within a reasonable time. e) It will make available, upon request, a copy of the clauses to data subjects who are third party beneficiaries under clause III, unless the clauses contain confidential information, in which case it may remove such information. Where information is removed, the data exporter shall inform data subjects in writing of the reason for removal and of their right to draw the removal to the attention of the authority. However, the data exporter shall abide by a decision of the authority regarding access to the full text of the clauses by data subjects, as long as data subjects have agreed to respect the confidentiality of the confidential information removed. The data exporter shall also provide a copy of the clauses to the authority where required. II. Obligations of the data importer The data importer warrants and undertakes that: a) It will have in place appropriate technical and organisational measures to protect the personal data against accidental or unlawful destruction or accidental loss, alteration, unauthorised disclosure or access, and which provide a level of security appropriate to the risk represented by the processing and the nature of the data to be protected. b) It will have in place procedures so that any third party it authorises to have access to the personal data, including processors, will respect and maintain the confidentiality and security of the personal data. Any person acting under the authority of the data importer, including a data processor, shall be obligated to process the personal data only on instructions from the data importer. This provision does not apply to persons authorised or required by law or regulation to have access to the personal data. c) It has no reason to believe, at the time of entering into these clauses, in the existence of any local laws that would have a substantial adverse effect on the guarantees provided for under these clauses, and it will inform the data exporter (which will pass such notification on to the authority where required) if it becomes aware of any such laws. d) It will process the personal data for purposes described in Annex B, and has the legal authority to give the warranties and fulfil the undertakings set out in these clauses. e) It will identify to the data exporter a contact point within its organisation authorised to respond to enquiries concerning processing of the personal data, and will cooperate in good faith with the data exporter, the data subject and the authority concerning all such enquiries within a reasonable time. In case of legal dissolution of the data exporter, or if the parties have so agreed, the data importer will assume responsibility for compliance with the provisions of clause I(e). f) At the request of the data exporter, it will provide the data exporter with evidence of financial resources sufficient to fulfil its responsibilities under clause III (which may include insurance coverage). g) Upon reasonable request of the data exporter, it will submit its data processing facilities, data files and documentation needed for processing to reviewing, auditing and/or certifying by the data exporter (or any independent or impartial inspection agents or auditors, selected by the data exporter and not reasonably objected to by the data importer) to ascertain compliance with the warranties and undertakings in these clauses, with reasonable notice and during regular business hours. The request will be subject to any necessary consent or approval from a regulatory or supervisory authority within the country of the data importer, which consent or approval the data importer will attempt to obtain in a timely fashion. h) It will process the personal data, at its option, in accordance with:   i. the data protection laws of the country in which the data exporter is established, or ii. the relevant provisions of any Commission decision pursuant to Article 25(6) of Directive 95/46/EC, where the data importer complies with the relevant provisions of such an authorisation or decision and is based in a country to which such an authorisation or decision pertains, but is not covered by such authorisation or decision for the purposes of the transfer(s) of the personal data , or iii. the data processing principles set forth in Annex A. Data importer to indicate which option it selects: Initials of data importer: ___________; i) It will not disclose or transfer the personal data to a third party data controller located outside the European Economic Area (EEA) unless it notifies the data exporter about the transfer and i. the third party data controller processes the personal data in accordance with a Commission decision finding that a third country provides adequate protection, or ii. the third party data controller becomes a signatory to these clauses or another data transfer agreement approved by a competent authority in the EU, or iii. data subjects have been given the opportunity to object, after having been informed of the purposes of the transfer, the categories of recipients and the fact that the countries to which data is exported may have different data protection standards, or iv. with regard to onward transfers of sensitive data, data subjects have given their unambiguous consent to the onward transfer III. Liability and third party rights a) Each party shall be liable to the other parties for damages it causes by any breach of these clauses. Liability as between the parties is limited to actual damage suffered. Punitive damages (i.e. damages intended to punish a party for its outrageous conduct) are specifically excluded. Each party shall be liable to data subjects for damages it causes by any breach of third party rights under these clauses. This does not affect the liability of the data exporter under its data protection law. b) The parties agree that a data subject shall have the right to enforce as a third party beneficiary this clause and clauses I(b), I(d), I(e), II(a), II(c), II(d), II(e), II(h), II(i), III(a), V, VI(d) and VII against the data importer or the data exporter, for their respective breach of their contractual obligations, with regard to his personal data, and accept jurisdiction for this purpose in the data exporter’s country of establishment. In cases involving allegations of breach by the data importer, the data subject must first request the data exporter to take appropriate action to enforce his rights against the data importer; if the data exporter does not take such action within a reasonable period (which under normal circumstances would be one month), the data subject may then enforce his rights against the data importer directly. A data subject is entitled to proceed directly against a data exporter that has failed to use reasonable efforts to determine that the data importer is able to satisfy its legal obligations under these clauses (the data exporter shall have the burden to prove that it took reasonable efforts). IV. Law applicable to the clauses These clauses shall be governed by the law of the country in which the data exporter is established, with the exception of the laws and regulations relating to processing of the personal data by the data importer under clause II(h), which shall apply only if so selected by the data importer under that clause. V. Resolution of disputes with data subjects or the authority a) In the event of a dispute or claim brought by a data subject or the authority concerning the processing of the personal data against either or both of the parties, the parties will inform each other about any such disputes or claims, and will cooperate with a view to settling them amicably in a timely fashion. b) The parties agree to respond to any generally available non-binding mediation procedure initiated by a data subject or by the authority. If they do participate in the proceedings, the parties may elect to do so remotely (such as by telephone or other electronic means). The parties also agree to consider participating in any other arbitration, mediation or other dispute resolution proceedings developed for data protection disputes. c) Each party shall abide by a decision of a competent court of the data exporter’s country of establishment or of the authority which is final and against which no further appeal is possible. VI. Termination a) In the event that the data importer is in breach of its obligations under these clauses, then the data exporter may temporarily suspend the transfer of personal data to the data importer until the breach is repaired or the contract is terminated. b) In the event that: i. the transfer of personal data to the data importer has been temporarily suspended by the data exporter for longer than one month pursuant to paragraph (a); ii. compliance by the data importer with these clauses would put it in breach of its legal or regulatory obligations in the country of import; iii. the data importer is in substantial or persistent breach of any warranties or undertakings given by it under these clauses; iv. a final decision against which no further appeal is possible of a competent court of the data exporter’s country of establishment or of the authority rules that there has been a breach of the clauses by the data importer or the data exporter; or v. a petition is presented for the administration or winding up of the data importer, whether in its personal or business capacity, which petition is not dismissed within the applicable period for such dismissal under applicable law; a winding up order is made; a receiver is appointed over any of its assets; a trustee in bankruptcy is appointed, if the data importer is an individual; a company voluntary arrangement is commenced by it; or any equivalent event in any jurisdiction occurs then the data exporter, without prejudice to any other rights which it may have against the data importer, shall be entitled to terminate these clauses, in which case the authority shall be informed where required. In cases covered by (i), (ii), or (iv) above the data importer may also terminate these clauses. c) Either party may terminate these clauses if (i) any Commission positive adequacy decision under Article 25(6) of Directive 95/46/EC (or any superseding text) is issued in relation to the country (or a sector thereof) to which the data is transferred and processed by the data importer, or (ii) Directive 95/46/EC (or any superseding text) becomes directly applicable in such country. d) The parties agree that the termination of these clauses at any time, in any circumstances and for whatever reason (except for termination under clause VI(c)) does not exempt them from the obligations and/or conditions under the clauses as regards the processing of the personal data transferred. VII. Variation of these clauses The parties may not modify these clauses except to update any information in Annex B, in which case they will inform the authority where required. This does not preclude the parties from adding additional commercial clauses where required. VIII. Description of the Transfer The details of the transfer and of the personal data are specified in Annex B. The parties agree that Annex B may contain confidential business information which they will not disclose to third parties, except as required by law or in response to a competent regulatory or government agency, or as required under clause I(e). The parties may execute additional annexes to cover additional transfers, which will be submitted to the authority where required. Annex B may, in the alternative, be drafted to cover multiple transfers.   Dated: FOR DATA IMPORTER ………………………………………….. ………………………………………….. …………………………………………. ………………………………………….. ………………………………………….. ………………………………………….. …………………………………………. …………………………………………..   Dated: FOR DATA EXPORTER ………………………………………….. ………………………………………….. …………………………………………. ………………………………………….. ………………………………………….. ………………………………………….. …………………………………………. …………………………………………..   ANNEX A DATA PROCESSING PRINCIPLES 1. Purpose limitation: Personal data may be processed and subsequently used or further communicated only for purposes described in Annex B or subsequently authorised by the data subject. 2. Data quality and proportionality: Personal data must be accurate and, where necessary, kept up to date. The personal data must be adequate, relevant and not excessive in relation to the purposes for which they are transferred and further processed. 3. Transparency: Data subjects must be provided with information necessary to ensure fair processing (such as information about the purposes of processing and about the transfer), unless such information has already been given by the data exporter. 4. Security and confidentiality: Technical and organisational security measures must be taken by the data controller that are appropriate to the risks, such as against accidental or unlawful destruction or accidental loss, alteration, unauthorised disclosure or access, presented by the processing. Any person acting under the authority of the data controller, including a processor, must not process the data except on instructions from the data controller. 5. Rights of access, rectification, deletion and objection: As provided in Article 12 of Directive 95/46/EC, data subjects must, whether directly or via a third party, be provided with the personal information about them that an organisation holds, except for requests which are manifestly abusive, based on unreasonable intervals or their number or repetitive or systematic nature, or for which access need not be granted under the law of the country of the data exporter. Provided that the authority has given its prior approval, access need also not be granted when doing so would be likely to seriously harm the interests of the data importer or other organisations dealing with the data importer and such interests are not overridden by the interests for fundamental rights and freedoms of the data subject. The sources of the personal data need not be identified when this is not possible by reasonable efforts, or where the rights of persons other than the individual would be violated. Data subjects must be able to have the personal information about them rectified, amended, or deleted where it is inaccurate or processed against these principles. If there are compelling grounds to doubt the legitimacy of the request, the organisation may require further justifications before proceeding to rectification, amendment or deletion. Notification of any rectification, amendment or deletion to third parties to whom the data have been disclosed need not be made when this involves a disproportionate effort. A data subject must also be able to object to the processing of the personal data relating to him if there are compelling legitimate grounds relating to his particular situation. The burden of proof for any refusal rests on the data importer, and the data subject may always challenge a refusal before the authority. 6. Sensitive data: The data importer shall take such additional measures (e.g. relating to security) as are necessary to protect such sensitive data in accordance with its obligations under clause II. 7. Data used for marketing purposes: Where data are processed for the purposes of direct marketing, effective procedures should exist allowing the data subject at any time to “opt-out” from having his data used for such purposes. 8. Automated decisions: For purposes hereof “automated decision” shall mean a decision by the data exporter or the data importer which produces legal effects concerning a data subject or significantly affects a data subject and which is based solely on automated processing of personal data intended to evaluate certain personal aspects relating to him, such as his performance at work, creditworthiness, reliability, conduct, etc. The data importer shall not make any automated decisions concerning data subjects, except when: a) i. such decisions are made by the data importer in entering into or performing a contract with the data subject, and ii. the data subject is given an opportunity to discuss the results of a relevant automated decision with a representative of the parties making such decision or otherwise to make representations to that parties. or b) where otherwise provided by the law of the data exporter. ANNEX B DESCRIPTION OF THE TRANSFER (To be completed by the parties) Data subjects The personal data transferred concern the following categories of data subjects: None. Purposes of the transfer(s) The transfer is made for the following purposes: For the purposes of conducting the research activities specified in Appendix 2 of the Data Access Agreement to which these Standard Contractual Clauses have been appended. Categories of data The personal data transferred concern the following categories of data: Genetic data. The data has been further specified in Appendices 1 and 2 of the Data Access Agreement. Recipients The personal data transferred may be disclosed only to the following recipients or categories of recipients: The recipients of the data are specified in Appendix 2 of the Data Access Agreement to which these Standard Contractual Clauses have been appended. Sensitive data (if appropriate) The personal data transferred concern the following categories of sensitive data: Genetic data. The data has been further specified in Appendices 1 and 2 of the Data Access Agreement. Data protection registration information of data exporter (where applicable) Not applicable. Additional useful information (storage limits and other relevant information) Contact points for data protection enquiries Data importer Data exporter [Name] Data Protection Officer: Lotta Ylä-Sulkava [Email] tietosuoja@helsinki.fi [Tel] tel. 02941 911 (switchboard)