The privacy of all SuperAgers Family Study participants’ samples and information will be ensured through the de-identification of data by use of unique, unnamed barcodes. Sequencing data along with linked phenotype data will be protected and maintained in a HIPAA-compliant data repository. Additionally, here are few more steps that we’ll take to protect your privacy throughout the study:
- Your data will be stored and encrypted on protected computers. We will limit and keep track of who can see this data.
- We will limit who is allowed to see information that could directly identify you, like your name or Social Security number.
- In order to work with your health data, researchers must sign a contract stating they will not attempt to reveal your identity.
- We will inform you immediately if a data breach occurs.