Your privacy is very important. The BioGer Biobank has implemented many safeguards to protect your privacy.
The BioGer Biobank is a research repository that stores samples and data that are linked to each person’s medical information. The goal of the BioGer Biobank is to make these samples and data available to researchers to study how genes, lifestyle and other factors affect people’s health, aging mechanisms and contribute to age-related diseases. Samples may be used for different types of research on aging closely linked to IRCCS INRCA healthcare and research areas.
Participation in the BioGer Biobank is voluntary. We ask that you read the Informed Consent Form that provides details on the purpose of the study, how your samples and information may be used, and the risks and benefits of joining this study.
When you provide consent, you allow collection and storage of aliquots of blood and derivatives, linkage of the blood sample with your BioGer electronic record, and storage of a health information questionnaire that collects additional information about health behaviours, lifestyle, and family history. When you provide consent, you also agree to be re-contacted by the BioGer Biobank in the future for additional information or samples. Remember that your consent can be revoked partially or completely at any time.
When a researcher wants to analyse your samples, they must first submit a request, including a description of the research project, a list of the researchers involved, and what type of samples will be needed.
The Scientific Director, along with the Advisory Board and BioGer Manager, evaluates these requests carefully before approving them to help ensure that your privacy is protected and that the research request is sound.
Once approved the BioGer Biobank will provide a de-identified sample – in such cases, the sample is assigned a code and the researcher does not receive any information that could be used to identify you. The key to the code is stored in a secure file that is kept separate from your blood sample and health information. The only people who can see your identifiable information, such as your name, medical record number, and dates, are trained staff from the BioGer Biobank.
The BioGer Biobank privacy safeguards are based on national and European laws and regulations for patients’ data treatment and security. One key law is the European Regulation on General Data Protection (GDPR) 2016/679 and the Italian Decree 2018/101, implementing this Regulation.
We hope that this information helps you to understand the important information provided in the Informed Consent Form. After you have read the Informed Consent Form, if you have any additional questions, please contact us.