Familial breast cancer targeted sequencing with ONT

1. Purpose: The purpose of this genomic data access policy is to establish guidelines and procedures for accessing and using genomic data collected and stored by Funciación para la Formación e Investigación Sanitarias de la Región de Murcia (FFIS)/IMIB. It ensures that genomic data is handled in a responsible, ethical, and secure manner, while promoting scientific research and advancements. 2. Scope: This policy applies to all individuals, including researchers, employees, and external collaborators, who want to access or use genomic data held by Fundación para la Formación e Investigación Sanitarias de la Región de Murcia (FFIS)/IMIB and stored in EGA (European Genome-phenome Archive). 3. Data Access Requests and EGA Data Submission: a. Access to genomic data in EGA shall be granted only to authorized individuals who have a legitimate need to conduct scientific research or fulfill their professional responsibilities. b. All individuals involved in the data submission process must follow the EGA data submission guidelines and comply with any additional requirements specified by FFIS and EGA. 4. Data Use and Sharing: a. Genomic data accessed and uploaded to the EGA database must be used solely for the purposes specified in the approved Data Access Agreement (DAA) and in accordance with the EGA data sharing policies. b. Researchers and individuals involved in the data submission process shall not share, disclose, or transfer genomic data to third parties without explicit permission from the Data Access Committee (DAC). c. When publishing research findings based on the genomic data, researchers should acknowledge the data source and comply with any data sharing policies or publication guidelines set by FFIS. 5. Data Security and Confidentiality: a. Genomic data must be stored and transmitted in a secure manner, using appropriate encryption and access controls, to prevent unauthorized access, loss, or theft. b. Individuals accessing genomic data shall comply with all relevant data protection laws and regulations, maintaining strict confidentiality and privacy of the data. 6. Compliance and Monitoring: a. Compliance with this policy shall be regularly monitored by the DAC. b. Non-compliance with this policy may result in disciplinary actions, including revocation of data access privileges, as deemed appropriate.