The most sophisticated computer security tools currently available are used to store and protect your genetic and non-genetic information as gathered by the CPMC research study. To protect your privacy, all data that you provide to the study (medical data, family history, lifestyle information and other survey information) will be stored separately from your email address and any identifying information.
The systems used by Coriell are similar to those used by banks to prevent unauthorized access to the system. In addition to our rigorous access restrictions and our network security, our data system is audited by an independent security consulting firm. As a CPMC study participant you will be able to view your genetic risk results through a highly secure website only after logging into your personal account using your username and password.
To ensure confidentiality, a unique barcode is assigned to your saliva sample upon enrollment in the study. No personal identifying information is used to label your sample or the genetic data generated from your sample. Barcoded samples are stored securely, separate from files which link your name to your barcode number. Paper and electronic files linking names to barcode numbers are kept locked and accessible only to the CPMC study data managers who are located at the Coriell Institute.
Sample Storage and Future Use
Your sample may be kept indefinitely, unless you contact us and request to withdraw your consent (see "Consent Management" when you sign in to your CPMC account). If you wish to withdraw from the study, you can request that:
- The CPMC study close your online account and stop communicating with you via email
- Any portion of your sample that has not been analyzed or given to biomedical researchers (with your permission) be destroyed
- Data associated with your sample be destroyed. It is not possible to withdraw any de-identified data which has already been given to the research community (with your permission at the time of consent because it is de-identified). Therefore, these data may still be used by biomedical researchers, but no additional sharing would occur
Security of Shared Data and Samples
The secure system used by the CPMC research study ensures that once your genetic results are available, only you can view this information and only you control who it is shared with. Only you can release your identifiable result to others. If you choose to share your results with others, Coriell cannot guarantee the confidentiality of the information once you have released it.
If you agree to share your de-identified health data, genetic results, and/or DNA sample with biomedical researchers, a sample code number (different from your original barcode number) will be used to identify this data. No personally identifying information about you will be released to anyone outside of the CPMC research study without your authorization. In addition, all qualified Coriell research study investigators who have access to data have signed legal documents requiring them to protect the privacy study participant information.