Technical Issue Resolved with Online Organ and Tissue Donor Registration
In Ontario, people who wish to be organ or tissue donors can easily register their consent. They can do this online at ServiceOntario.ca/BeADonor, by visiting the nearest ServiceOntario centre, or by printing out and mailing the Gift of Life consent form. In order to register your consent you must be OHIP eligible and aged 16 years or over. The Online Donor Registration System allows you to give consent for organ and tissue donation, check registration status, specify the organs and/or tissue to be donated, and change or withdraw consent at any time.
Trillium Gift of Life Network (Ontario's organ and tissue donation and transplant agency) always seeks confirmation of registered consent from potential donor's family for organ and tissue donation. Trained staff from Trillium Gift of Life Network will share a potential donor's registration decision with the family during this conversation, if they were registered. Anyone wishing to be an organ or tissue donor should register their consent and discuss their wishes with their family.
Update on Registration Website
When someone registers to be a donor, they have an option to indicate their preference to have all organs and tissue donated, or to exclude specific organs or tissue that they do not wish to donate.
The online donor registration option on ServiceOntario.ca/BeADonor was taken offline on September 19, 2014 after a technical issue was discovered. Between March 23, 2013 and September 19, 2014, the system inadvertently caused incomplete or inaccurate data to be recorded when an individual went online to register as an organ and tissue donor, or to update their registration.
Specifically, during this period, the system incorrectly recorded donor "exclusions." Exclusions are when a person consents to donate any needed organs or tissue except for specific organs or tissue that they expressly identify as "excluded," meaning they do not want to donate them.
This technical issue has not affected the privacy or security of the information of any person who has registered their consent online or otherwise. People who have not registered as an organ and/or tissue donor are not affected, nor are people who registered or updated their consent in person at a ServiceOntario centre or by mail.
The technical issue has been addressed and the system went back online on September 25, 2014.
Organ Donation Protocols
Trillium Gift of Life Network always seeks confirmation of registered consent from potential donor's family for organ and tissue donation.
This was the case with all individuals affected by this technical issue.
- Of the approximately 60,000 who registered online between March 23, 2013 and September 19, 2014, 87 people passed away, and of those, 9 people donated tissue. Trillium Gift of Life Network confirmed that donations were made according to their wishes.
- Individuals who registered online during that period have been flagged. They will remain flagged until their information is updated.
- If an individual passes away before they have the opportunity to update their information, their file will remain flagged. Consistent with standard protocol Trillium Gift of Life Network will advise the family of the individual's registration status and inform them of the reason why their file has been flagged. No organ or tissue donation will take place unless the family confirms the individual's consent.
- Between March 23, 2013 and September 19, 2014, 59,109 people registered their wishes online.
- Online registrations represent about 12 per cent of new registrations.
- More than 400,000 people registered their wishes in person or by mail.On average, 140 people register or update their registration online per day.
Status Update and Next Steps
- Online Donor Registration was tested to ensure the problem had been fixed before the site was reactivated.
- A letter from the Ontario government will be sent to individuals who registered or updated their registration online between March 23, 2013 and September 19, 2014. They will be asked to make sure their donation preferences are accurately recorded by visiting ServiceOntario.ca/BeADonor to update their registration, or by filling out the Gift of Life form and mailing it back in the enclosed postage-paid envelope.
- A dedicated hotline has been set up at 1-844-209-9287 to provide answers to any questions the public may have.