(Disponible en français : Consentement pour le don d’organes au Canada)
Every week, 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 2006 and 2015, the Canadian Institute for Health Information reported a 28% increase in the deceased organ donor rate in Canada, and recent statistics show that the deceased donor rate continued to increase in 2016.
Despite this increase, the waiting list of Canadians in need of an organ transplant continues to grow. In the debate over strategies to increase the number of deceased organ donors, the concept of presumed consent is receiving increased 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. In all cases, consent to donate organs after death must be explicit rather than presumed.
International Deceased Organ Donor Rates, 2015, and Consent System
Proponents of presumed consent note that countries with the highest deceased donor rates worldwide have established presumed consent legislation. The interactive map below provides information about the deceased organ donor rate per million population (PMP) in jurisdictions worldwide and whether legislation allows for explicit or presumed consent.
Maps prepared by Library of Parliament, Ottawa, 2017, using data from Global Observatory on Donation and Transplantation (GODT), WHO-ONT, 2015; Natural Earth, “Admin 0” 1:50m Cultural Vectors, version 4.0.0. The following software was used: Esri, ArcGIS, version 10.3.1.
The figure below presents these data in chart form to display Canada’s deceased organ donor rate in relation to other jurisdictions.
Source: Prepared by Library of Parliament with data obtained from the Global Observatory on Donation and Transplantation, Organ Donation and Transplantation Activities, 2015, September 2017.
Considerations in 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.
- Organ Donation as a “Gift”
Most of Canada’s organ donation laws refer to organ and tissue donation as a “gift,” and presumed consent would contradict that approach. Critics of presumed consent point out that there has been public backlash in some jurisdictions in response to implementing presumed consent.
- 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 explaining the process, as well as the risks and benefits of any 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 only needs to comply 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 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.
- The Donor Pool
In Canada, British Columbia, Alberta, Manitoba and Ontario have web-based donor registries that allow individuals to express their willingness to become a donor after death.
According to a 2016 Canadian Blood Services report, all provinces, except for Saskatchewan, link intent to donate to health cards or drivers’ licences. The report also states that despite 91% public support for organ donation, only half the population has made their intentions clear either through registration or by informing family. This 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.
- Organ Donor Rates
It is clear that the majority of 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 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.
It has been noted that most countries with presumed consent legislation, including Spain, do not enforce the practice. Instead, these countries have invested in health infrastructure (focussing on patient identification and referral, public awareness, in-hospital teams dedicated to donation and transplantation, etc.).
- 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 Canada’s current opt-in approach, 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.
Organ Donation in Canada, Library of Parliament, 21 April 2015
Organ Donation and Transplantation in Canada, Library of Parliament, 21 November 2014 (revision forthcoming)
The Canadian Institute for Health Information’s Canadian Organ Replacement Register
Author: Sonya Norris, Library of Parliament