Every week, some five Canadians die waiting for an organ transplant. Deceased donors are an important source of organs for transplantation since each donor can provide up to eight organs. Between 2010 and 2019, the Canadian Institute for Health Information reported a 59% increase in the deceased organ donor rate in Canada and a 42% increase in transplant procedures.
Despite this increase, the number of Canadians in need of an organ transplant continues to outpace the number of organs available for transplant. In the debate over strategies to increase the number of deceased organ donors, the concept of presumed consent is receiving more attention.
Consent Approaches for Organ Donation
- Explicit consent (“opt-in”) refers to a system that allows individuals to indicate their choice to become a donor following death, either through a registry, health card or driver’s licence. Where a choice has not been expressed, next of kin can consent to the donation.
- Presumed consent (“opt-out”) is an approach in which individuals are presumed to have consented to organ donation following death, unless they express a wish before death not to be organ donors.
In Canada, all aspects of organ donation and transplantation are under the jurisdiction of the provinces and territories, except for the safety of donated organs. All provinces and territories have implemented legislation for donation consent regimes. While Nova Scotia implemented a presumed consent regime in 2021, all other provinces and territories have an explicit consent regime.
Consent System and 2019 International Deceased Organ Donor Rates
Proponents of presumed consent note that most of the countries with the highest deceased donor rates worldwide have established presumed consent legislation. The interactive map provides information about the deceased organ donor rate per million population (PMP) in various countries and whether their legislation allows for explicit or presumed consent.
Maps prepared by Library of Parliament, Ottawa, 2021, using data from the Global Observatory on Donation and Transplantation (GODT), 2019; Natural Earth, 1:50m Cultural Vectors, version 4.0.1; Amanda Rosenblum et al., “The authority of next-of-kin in explicit and presumed consent systems for deceased organ donation: an analysis of 54 nations,” Nephrology Dialysis Transplantation, vol.27, no. 6, June 2012. The following software was used: Esri, ArcGIS, version 10.8.0 and ArcGIS Online.
The figure below presents these data in chart form to display Canada’s deceased organ donor rate in relation to that of other jurisdictions.
Note: In 2019, the United Kingdom operated an explicit consent system, except Wales which implemented presumed consent in 2015. England and Scotland passed legislation for presumed consent in 2019, but they were not yet implemented.
Source: Prepared by Library of Parliament with data obtained from the International Registry on Organ Donation and Transplantation, Worldwide Actual Deceased Organ Donors 2019 (PMP), Amanda Rosenblum et al., “The authority of next-of-kin in explicit and presumed consent systems for deceased organ donation: an analysis of 54 nations,” Nephrology Dialysis Transplantation, vol.27, no. 6, June 2012.
The Debate about Presumed Consent
There are issues to be considered when examining the potential for a presumed consent regime to increase organ donor rates in Canada.
1. Canada’s Approach to Consent in Health Matters
In all matters related to health and healthcare, health professionals in every jurisdiction in Canada seek explicit, informed consent from individuals being treated or from their decision-makers.
This form of consent involves a comprehensive discussion between the healthcare provider and the patient to explain the process, as well as the risks and benefits of any proposed treatment or procedure.
Some stakeholders argue that offering the opportunity to opt-out under presumed consent is not sufficient as “the absence of objection cannot be taken as informed consent.” However, it has also been noted that in Canada, “organ donation legislation does not impose a standard of informed consent.” Rather, consent for donation needs to comply only with the criteria set out in organ donation legislation.
A 2012 article suggested that support for a presumed consent approach to organ donation may be increasing among Canadians, and that perhaps presumed consent should be implemented and tested in at least one jurisdiction. This would allow its effect on the organ donor rate to be measured without changing other variables that affect organ donor rate.
2. The Donor Pool
In Canada, most provinces and territories have implemented online registries where residents can indicate their intent to donate organs after their death. The remaining jurisdictions, such as New Brunswick and Newfoundland and Labrador, require registration using forms that can be submitted to the provincial health insurer.
According to Canadian Blood Services public support for organ donation is over 90%, but only 32% of the population have registered their intent to donate. This difference suggests that the requirement for explicit consent reduces the potential donor pool.
Under a presumed consent approach, virtually all residents would be considered possible organ donors, except for individuals who express their opposition. A larger donor pool should produce a higher donor rate.
However, as the figure below illustrates, only a small proportion of individuals who die can be considered as potential organ donors after applying various criteria, regardless of the consent approach.
Source: Prepared by the Library of Parliament based on data provided in CIHI, Deceased Organ Donor Potential in Canada, Figure 2, December 2014.
3. Organ Donor Rates
As noted in the figure above, most of the countries with the highest deceased organ donor rates also have presumed consent legislation, and several analyses have attempted to determine whether presumed consent, on its own, increases the donor rate. Although some studies have shown that presumed consent “is associated with increased donor rates even when other factors are accounted for,” most analyses conclude that investment in other aspects of donation must also be implemented in order to increase rates.
In general, countries with high organ donation rates have invested in health infrastructure (focusing on patient identification and referral, public awareness, in-hospital teams dedicated to donation and transplantation, etc.).
4. Role of the Family
Most jurisdictions worldwide will proceed with organ donation only with the consent of the family, regardless of the consent regime in place. Presumed consent legislative frameworks can either be “soft,” meaning that family members can refuse to permit the donation of organs following death, or “hard,” where family members are not consulted.
Even under the opt-in approach used in most Canadian provinces, it is unlikely that organ retrieval would take place from an individual who had registered as an organ donor if the family were not in agreement. It is for this reason that organ donation and transplantation organizations emphasize the importance of discussing individual wishes with family members.
Sonya Norris, Organ Donation in Canada, Hillnote, Library of Parliament, 16 April 2021
Sonya Norris, Organ Donation and Transplantation in Canada: Statistics, Trends and International Comparisons, Library of Parliament, 1 April 2020.
Sonya Norris, Strategies to Optimize Organ and Tissue Donation and Transplantation, Library of Parliament, 1 April 2020.
The Canadian Institute for Health Information’s Canadian Organ Replacement Register
Author: Sonya Norris, Library of Parliament