Ethics, privacy, and security

We maintain the highest standards of ethics and data stewardship in our research. Our approach is built on transparency, respect for our participants, and the responsible management of the information entrusted to us.

Always your choice

Participation in our research is always an informed choice. We provide clear, straightforward information to ensure individuals can make the right decision for them.

Voluntary participation: Joining a study is entirely voluntary, and participants have the right to withdraw at any time, for any reason, without any impact on their healthcare.

Informed consent: We provide detailed information about the purpose, processes, and potential risks of our research alongside live access to professional research coordinators who are available to answer any questions.

Data stewardship

Our data management protocols define exactly how participant information and research data is protected and handled.

Controlled use: Data is used only for the specific research purposes to which participants have expressly consented. Access is strictly limited to authorized individuals for predefined purposes.‍

Stored in Canada: All research data is stored within Canada and managed by Sequence Bio with oversight from our Research Oversight Committee.

No sale of data: We do not sell participant data or biological samples.

Privacy by design

We use a "Privacy by design" approach to ensure a participant’s identity is always protected throughout our research.

De-identification: Personally identifiable information (PII) is encrypted and stored in a separate database. In the research environment, data is assigned a unique study code to ensure PII is never exposed during analysis.