1. Introduction
MyBioPortal (“BioPortal,” “we,” “our,” or “us”) is committed to protecting the privacy and confidentiality of individuals who participate in our research and use our website, mybioportal.ca. This Privacy Policy explains how we collect, use, store, and share personal information, and the rights available to participants and visitors.
By participating in BioPortal or using our website, you agree to the terms of this Privacy Policy.

2. Information We Collect
We may collect and manage the following types of information:
Personal information: such as name, contact details, demographic data, or other identifiers provided during registration or communication with us.
Health and research data: including biological samples, medical records, genomic data, and related health information provided under informed consent.
Website usage data: including cookies, IP addresses, and analytics data to improve user experience and website functionality.

3. Purpose of Collection
We collect information to:
Support scientific and medical research.
Enable secure researcher access to anonymized or coded datasets.
Ensure communication with participants regarding their ongoing consent and participation.
Improve and maintain our website and services.
Comply with applicable legal, regulatory, and ethical requirements.

4. Consent
Participation in BioPortal research requires informed consent. Participants are provided with clear information about the use of their data and biological samples. Consent is ongoing, meaning participants may review, update, or withdraw their consent at any time.
For website visitors, consent to cookies and similar technologies is obtained through browser settings or notices on our website.

5. Data Use and Sharing
Data and samples are used only for approved research purposes.
Access is governed by the BioPortal Data and Samples Access Committee and requires Research Ethics Board (REB) approval.
Data is shared only in de-identified or coded form to protect participant privacy.
External researchers must sign strict data access agreements that outline permitted use and confidentiality obligations.

6. Confidentiality and Security
We apply strict safeguards to protect your information, including:
Encryption and secure storage systems.
Restricted access to authorized personnel only.
Pseudonymization or anonymization of research data.
Regular audits and compliance checks.

7. Your Rights
As a participant or visitor, you have the right to:
Access your personal information and request corrections.
Request information about how your data is used and shared.
Withdraw from the BioPortal at any time, subject to research and ethical constraints.
File a complaint with the Privacy Commissioner of Canada or Québec’s Commission d’accès à l’information if you believe your rights have been violated.

8. Data Retention
Personal data and biological samples are retained only as long as necessary to fulfill research purposes and comply with legal obligations. When access agreements expire or data is no longer required, it is securely destroyed or returned, as applicable.

9. Compliance with Law
We comply with applicable Canadian privacy legislation, including the Personal Information Protection and Electronic Documents Act (PIPEDA), Québec privacy laws, and relevant institutional and ethical guidelines.

10. Updates to This Policy
We may update this Privacy Policy from time to time to reflect changes in law, research practices, or organizational policies. Updates will be posted on this page with a revised effective date.

11. Contact Us
If you have questions, requests, or concerns regarding this Privacy Policy or your personal information, please contact us at:
BioPortal
514-340-8222
david.morrison@ladydavis.ca