WES dataset of mesothelioma MIST4 study

Policy Title Data Access Policy for Mesothelioma Research Programme Policy Description This policy governs controlled access to the data generated by Mesothelioma Research Programme. The dataset contains human genomic and/or phenotypic information that could potentially lead to re‑identification if misused. Therefore, access is carefully regulated to ensure participant privacy, comply with ethical approvals, and uphold applicable laws and institutional guidelines. The data are available for legitimate scientific research purposes only. Applicants must demonstrate that their intended use aligns with the aims of the original study and does not contravene any ethical, legal, or institutional restrictions. All applicants are required to provide proof of institutional affiliation, evidence of research ethics approval, and a scientifically sound research proposal. Access Restrictions and Permitted Uses Access to the controlled‑access data is subject to the following conditions: 1. Data may only be used for research related to human health, disease, or biomedical investigation. 2. Data must not be used to attempt identification or re‑identification of any participant. 3. Data may not be used for commercial product development unless explicitly permitted by the original consent and approved by the DAC. 4. Data must not be shared, transferred, or redistributed to any third party. Each researcher who needs access must submit an independent request through EGA. 5. Data must not be used outside the scope of the approved research project. Additional uses require new approval from the DAC. 6. Data users must comply with all applicable laws and regulations related to human genomic data protection (e.g., GDPR or equivalent). Data Access Application Requirements Applicants must provide: ⦁A detailed research proposal including objectives, methodology, and expected outcomes. ⦁Proof of Research Ethics Committee (REC/IRB) approval covering the proposed use of the data. ⦁A completed and signed Data Use Agreement (DUA), confirming adherence to all terms of access and data protection requirements. ⦁Confirmation of secure data storage and handling procedures within the applicant’s institution. Oversight and Review All data access requests are reviewed by the Data Access Committee (DAC) for this project. The DAC is responsible for evaluating applications to ensure that: ⦁The proposed research is scientifically valid. ⦁The research aligns with participant consent and the ethical approval of the original study. ⦁Adequate safeguards are in place to protect participant confidentiality. The DAC for this dataset consists of the mesothelioma research group led by Professor Dean Fennell (or replace with your actual DAC information). The DAC reserves the right to request additional information, impose additional restrictions, or reject any application that does not meet the required standards. Data Use Agreement (DUA) Requirements Approved applicants must agree to the following obligations: ⦁Maintain data in a secure computing environment with controlled access. ⦁Refrain from attempting to identify individuals or linking data with external datasets that may lead to identification. ⦁Use the data only for the approved project and for the approved duration. ⦁Destroy or securely delete all downloaded data upon completion of the project or expiration of access rights. ⦁Acknowledge the original study in publications as required by the DAC. ⦁Notify the DAC of any breaches, suspected breaches, or compliance concerns immediately. Ethical and Legal Compliance All data in this dataset were collected under informed consent and approved by the appropriate Research Ethics Committee. Access and use of the data must strictly adhere to all obligations derived from: ⦁The original participant consent ⦁Institutional and national ethics requirements ⦁Data protection legislation ⦁Governance policies of the European Genome‑phenome Archive (EGA) Failure to comply with policy requirements may result in suspension of access, institutional notification, or further action as required.