Ethics and Privacy

Privacy Policy

The Ontario Hereditary Cancer Research Network (“OHCRN”, “we”, “our”) is a research initiative that will support a database hosted and funded by the Ontario Institute for Cancer Research (“OICR”). OHCRN aims to identify all carriers of hereditary cancer syndromes, or other individuals at-risk for hereditary cancer, in Ontario through genetics clinics, genetics laboratories, tumour profiling trials, and by participant self-identification and enrolment. To achieve this aim, OHCRN has established a database in order to better connect researchers to data derived from clinical and genomic information, so that 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 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 will be required to provide your express consent before any of your personal information is 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 will 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, 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 healthcare provider;
• Genetic information from the results of your genetic and pathology testing; and
• OHIP number provided by either your healthcare provider or genetic testing laboratory.

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 aims as set out in the consent form and this Privacy Policy.

We will use your personal information for the following:

• To verify eligibility criteria;
• 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 updates and newsletters, and to receive information about educational events (you may opt out of receiving such communications at any time);
• To generate a de-identified database for hereditary cancer research; and /or
• To generate aggregate data (data from which individual user identities or characteristics have been removed) to publish on the OHCRN website.

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

• To contact your next of kin or a secondary contact, if needed;
• To share your information, including genetic reports, with existing cancer registries (where you meet eligibility criteria);
• To connect you with other research studies for which you may be eligible; and/or

• To facilitate 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 will it 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 optionally 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.

• Cancer Care Ontario (Ontario Health) Breast Screening 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 database is housed in a secure database on OICR servers or in a secure location whose access is governed by OICR. The OHCRN database is a multi-tier, scalable and secure data management system utilizing best practices for secure databases, including data separation, encrypted network communication and encrypted data storage.

Controlling your personal information

You can access the OHCRN database to see the information you have provided yourself in order to create your profile. You can make changes to your profile information, if needed. You will not be 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 such as your clinical information or test results.

If you decide you no longer wish to be involved in OHCRN, you can request a pause or withdrawal from the registry at any time without providing a reason 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 otherwise 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 view 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:

Attn: Privacy Officer
Ontario Institute for Cancer Research
MaRS Centre, South Tower
661 University Avenue, Suite 510
Toronto, Ontario
Canada M5G 0A3
Email: privacy@oicr.on.ca opens email application