Privacy
We know that if we want to be trusted with your most personal information, we have to earn that trust. Every one of us at the NL Genome Project is committed to protecting the privacy and security of your information, day in and day out.
Data is stored in Canada and is controlled in Newfoundland and Labrador by Sequence Bio.
Your information
We do not own your information. If you choose to take part in the NL Genome Project, you are only granting us permission to use it for the research purposes described in the Consent Form.
Here are the types of data we’ll use for research:
- Genetic Information: Your saliva sample and the data that results when it is analyzed by genotyping and sequencing.
- Health Information: Your medical records and the information you provide in the questionnaire.
Your genetic and health information will only be identified by a random and unique code called a Study Code.
- Personally Identifiable Information (PII): Information that identifies you, like your MCP number, name, and contact information. This data is never used for research purposes and is protected with strict security controls.
- We collect the least amount of personal information required for specific purposes, for example to contact you or to return findings.
- We need this information to enroll or withdraw you from the study, provide genetic counselling support, return findings, share updates, recontact you and access your health records.
Your choice
It is up to you whether you want to participate in the NL Genome Project. To help you decide, we promise to be upfront about the ways in which we will store, protect and use your data. You can also leave the project at any time without impacting your care.
No entry
The NL Genome Project is committed to the highest levels of security and protects data with the same best-practice measures used by leading hospitals, banks, and governments around the world.
Our industry-leading security program is built to align with international cybersecurity standards including the ISO Information Security Standards (27001/2) and the NIST Cybersecurity Framework. We assess all cloud services using frameworks developed by the Cloud Security Alliance and our applications are built following the Open Web Application Security Project (OWASP). All information is encrypted using Advanced Encryption Standard (AES) 256 bit encryption. Restricted information, such as health information, is double encrypted - this means that the data is encrypted (initial encryption) and then stored in an encrypted database (double encryption).
Protecting you
Information that identifies you, like your name or birthday, is not used for research and is locked away in a separate encrypted database. Instead, you will only be identified by a unique Study Code when research is performed.
- Did you know? The Study Code is so unique that you’d need to generate 1 billion of them per second for about 85 years to find a match.
Close to home
All of the NL Genome Project’s data is stored in Canada utilizing cloud services backed by Canadian data centres, and is guarded by 24/7 monitoring, regular backups, intrusion detection, and audit logs for forensic analysis. Access to any data is controlled in Newfoundland and Labrador by Sequence Bio.
- We use the same technology as the Ottawa Hospital Research Institute, Harvard Medical School, and the US Department of Homeland Security.
Restricted access
Only authorized individuals may see information about you. Even then, they only see this information when required for very specific purposes.
Researchers cannot download, share or transfer data to anyone else, or use it for any purposes other than what you’ve agreed to. It is common in research to collaborate with other researchers. When this happens, they will not download or transfer any data. Instead, we bring them to the data by providing controlled and secure access to our research platform.
Sharing data
Individual data or data that identifies you will not be sold, and we will only use it in ways which you expressly agree to and are aware of. We will never sell your saliva sample. However, we do use and share aggregate, coded information with third parties in order to initiate research and perform business development, as outlined in the Consent Form.
The NL Genome Project has no control over the privacy and security of information you choose to share with others.
