Ethics and Privacy

Privacy Policy

The Ontario Hereditary Cancer Research Network (“OHCRN”, “we”, “our”) is a research initiative that will support a centralized database hosted and funded by Ontario Institute for Cancer Research (“OICR”). OHCRN aims to identify all carriers of hereditary cancer syndromes in Ontario through genetics clinics, genetics laboratories, tumour profiling trials, and by patient self-identification and enrolment. To achieve this aim, OHCRN has established a centralized database in order to better connect researchers to data derived from clinical and genomic information so they may conduct research to understand the biology, prevention, early detection and treatment of hereditary cancer syndromes. OHCRN also aims to better connect participants with researchers, clinical trials and applicable support groups.

This Privacy Policy is intended to provide transparency around our collection, use and disclosure of personal information contained in the OHCRN centralized database, and how you can control what happens to the personal information you choose to provide to us.

If you choose to participate in OHCRN, you are required to provide your express consent before any of your personal information will be collected by OHCRN. The consent form provides a detailed description of what personal information will be collected, how that personal information will be used and how it may be shared by OHCRN. This privacy policy reflects the details in the consent form and confirms your personal information will not be used in any manner that is inconsistent with the terms of the consent you provide.

What personal information we collect

As a participant in OHCRN, we will collect the following personal information about you:

• Profile Information, such as your name, date of birth, OHIP number, phone number, postal code and email that you enter yourself in order to create your profile;
• Clinical Information about your medical care and cancer diagnosis that is provided by your health care provider; and
• Genetic Information from the results of your genetic testing.

The above personal information is required for your participation in OHCRN.

We may also collect the following, additional Profile Information, which is optional for participation in OHCRN and at your discretion to provide:

• Full mailing address;
• Gender identity and sex assigned at birth (while providing this is optional, if you choose not to provide this information, the data you have provided to OHCRN may be excluded from studies that use sex at birth as an inclusion criteria); and
• Self-reported ethnicity.

Both the required and optional personal information you provide will be collected by various means including:

• From information you provide directly to OHCRN;
• From electronic and paper medical records accessed by OHCRN study team; and
• From various reports, including pathology, genetics and genomics.

How we use your personal information

Any personal information you provide will only be accessed by authorized members of OHCRN study team for the purpose of carrying out OHCRN’s research aims as set out in the consent form and this Privacy Policy.

We will use your personal information for the following:

• To contact you regarding enrollment in OHCRN, and to verify clinical information as needed;
• To include you in the OHCRN email distribution list, to receive reports and newsletters, and to receive information about educational events (you may opt out of receiving such communications at any time); and
• To generate aggregate data (data from which individual user identities or characteristics have been removed) to publish on the OHCRN website.

If you have expressly agreed in the consent form, we will use your personal information for the following:

• To contact your next of kin or a secondary contact, if needed.
• To access and use previously collected archival tissue/biospecimens (i.e., tissue, blood, DNA samples) and associated clinical data by approved researchers as part of unknown future research studies.

Who we share your personal information with and how it will be disclosed

Required Sharing of Personal Information:

As set out in the consent form, we will share your personal information as follows:

• For linkages with external provincial administrative health databases which allows OHCRN to measure the outcomes of participants, such as the Ontario Health Data Platform and the Ontario Cancer Registry; and
• With approved researchers for qualifying research projects. Note that these projects will also be approved by an independent research ethics board. Before sharing any information, all approved researchers will be required to execute a data access agreement with OICR, which specifies the purpose(s) for which the information may be used. Importantly, any personal information to be provided will be de-identified before it is disclosed to a researcher, meaning your personal information will be stripped of all “direct identifiers”; that is, all information that can be used to identify you is removed from the other information provided to the researcher.

If you have expressly agreed on the consent form, we will share your personal information with the following: 

1. Existing Ontario cancer registries (specialized carrier clinics) which recruit specific patient populations and register their information into databases. Examples of such registries include:
   • Cancer Care Ontario (Ontario Health) Breast Screen Program
   • The Ontario Familial Breast Cancer Registry
   • The Familial Gastrointestinal Cancer Registry
   • The Familial Breast Cancer Research Unit
   • The Pediatric Cancer Genetics Program
2. An OHCRN approved researcher or study team member to contact you about future research studies, clinical trials and surveys.

Other disclosures

In limited circumstances we may disclose your personal information to third parties if we believe the disclosure is necessary in order to meet any legal requirement or enforceable governmental request or if an emergency threatens the life, health or security of an individual.

How we safeguard your personal information

Your information is protected by administrative, physical and technical safeguards. The OHCRN centralized database is housed in a secure database on the OICR cloud infrastructure. This cloud infrastructure is located in a physically secure, continuously monitored environment, with restricted access. The OHCRN centralized database is a multi-tier, scalable and secure data management system, utilizing data separation, encrypted network communication and encrypted data storage. Access to participant identifiers for the purpose of patient contact (i.e., to update patient information, administer reminders, offer participation in clinical trials) is facilitated through the custom software, enabled as-needed to only designated administrators, as determined through role-based access privileges.

Controlling your personal information

You can access the OHCRN centralized database to see the information you have uploaded yourself in order to create your profile. You can make changes to your profile information, if needed. You are not able to see information of other participants, your molecular and pathology reports, or other information that has been added to the database by the OHCRN study team as part of your participation.

If you decide you no longer wish to be involved in OHCRN, you can request withdrawal from the registry at any time, without providing a reason, through the online OHCRN platform, or by contacting OHCRN@oicr.on.ca.

If you choose to withdraw, you may determine what happens to your personal information in accordance with the terms of your original consent, which provides further details on the available options. However, please note that it will not be possible to destroy any data already analyzed or processed for research purposes, or information already provided to researchers.

Privacy policy changes

We may update or other modify this Privacy Policy periodically. We shall notify you of changes to this Privacy Policy by posting our policy changes on the OHCRN website.

Additional information

If you would like to learn more about our commitment to protecting privacy, please see the OICR organizational Privacy Policy. You may also review our Information Practices Frequently Asked Questions.

If you have any questions or concerns about privacy at OICR or OHCRN, please send a written request to: