If you are interested in joining the genetic screening study, OurGenes, please click the "Get Started" button below to visit the enrollment website hosted by our genomics partner, Helix. Helix, a population genomics company, is partnering with UHN for this study. Population genomics is the study of the DNA of many people across various populations. If you choose to participate in OurGenes, Helix will analyze genetic information from your blood sample. If you are interested in joining OurGenes, please click the "Get Started" button below. You will then be asked to log into your myUHN account to verify your identity before continuing to Helix’s website. On the Helix website, you will be able to review the OurGenes consent form and get more information about the study. When accessing the Helix website, some of your information will be automatically shared with Helix by UHN to assist with the enrollment process. By clicking the "Get Started" button below and logging into your myUHN account, you agree to the following use of your information.
Personal Health Information Collected
The following personal health information will be collected from your myUHN account, and shared with Helix, in order to assist with the enrollment process:
Purpose of Collection
The purpose of Helix collecting your personal health information is to verify your identity and facilitate the initiation of your enrollment into the OurGenes Study. You have 30 days to complete the consent process. If after 30 days you haven’t yet signed the consent form, your progress will not be saved, and you will need to restart the process.
Use and Disclosure of Personal Health Information
After clicking "Get Started", you will be prompted to answer some eligibility questions. If you are not eligible to participate in the OurGenes Study, the answers to these questions will be sent by Helix to the study team at UHN for quality improvement purposes. This information will be stored by the UHN study team for the duration of the study. If you are not eligible for the study, information that could identify you (for example, your name) will not accompany the answers to these questions.Your personal health information provided by UHN at this point will be used by Helix for the sole purpose of facilitating your enrollment into the OurGenes Study.
In processing and managing your registration and study consent, Helix may share your personal identifying information (for example, your name, full date of birth, MRN) with authorized personnel involved in the study, such as the following entities:
Helix will ensure that any access to your information complies with the Personal Health Information Protection Act (PHIPA) and its regulations. Your information will not be used without your explicit consent for any purposes other than those stated in the consent form. Helix securely stores signed consent forms as evidence that an individual has completed the consent process and for inspection purposes during scheduled regulatory study-monitoring visits. Additionally, UHN will have access to copies of your consent forms for their records and regulatory compliance.
Data Stored in the US
The personal information and data collected during the consent process and during the course of this study will be stored on computer systems in the United States (US). When study information is generated in or transferred to the US, it is subject to US laws. These laws differ from those of Canada, including the USA Patriot Act, other laws and regulations and potential future Executive Orders. Under US law, US government agencies may access your personal information and health care data without your knowledge or consent. Helix may also be required to disclose your information to governmental authorities under different circumstances than those in Canada. If you have questions about the storage of your information in the United States, please speak with the UHN research team.
User Data Collection and Consent Management
Helix uses two software technologies (called Heap and Ketch) to manage your consent and to understand how you use this consent process. Heap collects data about your interactions with the consent platform that is used for the OurGenes Study. This data includes your IP address and your progress through the consent steps. Heap uses cookies and other tracking technologies. You can block or delete cookies in your browser settings if you prefer. Helix uses Ketch to collect information about your IP address when you provide consent. Ketch also collects information about your browser and device to ensure everything works correctly.
Data Transfer and Storage
Your personal health information will be securely transferred to Helix's systems in the United States. Any information and/or samples sent outside of Canadian borders may increase the risk of disclosure of information because the laws in other countries dealing with protection of information may not be as strict as in Canada. If you choose not to complete the enrollment process or are not eligible for the study, Helix will delete your personal health information 60 days after receiving it. If you choose to enroll in this study, your data will be stored by Helix indefinitely. Data with personally identifying information will be stored to accurately identify and delete data for withdrawing participants, conduct future diagnostic tests requested by your health care providers, and comply with regulatory audits. Research data (including genetic data) with personal identifiers removed will be stored indefinitely by Helix for future research approved by UHN and Helix.
Security Measures
Helix complies with industry best practices to keep your personal health information safe. These practices include encrypting your data, controlling who can access it, and continuously monitoring their security systems.
Contact Information
For questions or concerns about this privacy notice or your personal health information, or to exercise your privacy rights, you can contact the UHN Privacy Office by calling 416-340-4800 ext. 6937 or emailing privacy@uhn.ca.
Sincerely,
OurGenes Study Team
University Health Network
Tel: 437 676 3576
Email: OurGenes@uhn.ca
Website: www.uhn.ca/OurGenes