Presumed consent for organ donation is a libertarian nightmare. It inverts our understanding of freedom and autonomy and assigns the state as the first beneficiary of our dead bodies. Worse yet, it perverts the whole notion of consent by making disallowance an active process. It’s supposed to be the other way around.
To some, the whole thing feels a little too close to dystopian sci-fi, where the state gleefully hands out motorcycle licences when it needs to replenish the organ pool. Indeed, there’s something about the government presuming it can harvest your lungs and eyes after you die – unless you specifically indicate otherwise – that feels invasive and backward.
That perspective has been revived with the news that Alberta is on track to introduce an opt-out model for organ donation, after the successful first reading of a private member’s bill in the province’s legislature. A similar bill was tabled in Quebec earlier this month. Back in April, Nova Scotia became the first jurisdiction in North America to pass presumed consent legislation (to come into effect some time next year), and now Prince Edward Island has signalled it, too, might follow suit.
Other provinces, including Ontario, Saskatchewan and Manitoba, have at one time weighed the possibility of adopting an opt-out model, although they eventually decided against it. In each case, the rationale was some version of “the public isn’t ready.”
The public might very well still not be ready (Manitoba was considering opt-out legislation as recently as 2017), but the practical reasons for adopting an opt-out system continue to hold sway, particularly as we learn from other jurisdictions about what works and what does not. Many people will still nevertheless be uneasy with the notion of the state claiming ownership over individuals’ organs, but ultimately, those are just feelings. And if I may borrow a well-loved refrain of our times: Facts don’t care about your feelings.
The fact here is that an opt-out system, coupled with the right complementary measures, will dramatically increase rates of organ donations. Awareness campaigns simply haven’t moved the dial sufficiently; we know that somewhere in the realm of 90 per cent of Canadians support organ donation, but opt-in rates are considerably lower, hovering around 20 to 30 per cent depending on the province.
Granted, there have been certain policy changes, including to the criteria for when donation is possible (after cardio-circulatory death, instead of just brain death, for example), that have considerably increased the number of actual transplants. But supply is still struggling to keep up with demand and hundreds of Canadians (223 in 2018, to be exact) are still dying on transplant wait lists every year. Many more are suffering while they wait.
Regardless, some see this move toward presumed consent as the health-care equivalent of realpolitik – an unethical policy that undermines individual rights in pursuit of a tangible goal. But the individual hasn’t actually lost any rights here; he or she can still decide whether to become an organ donor. The only difference is the requirement to opt out. The choice has been preserved.
And while it might seem unprecedented to grant the state this sort of control over what we do with our bodies, it isn’t entirely divorced from current norms. The state does not allow us, for example, to sell our organs or sell our bodies for profit as surrogates. And it assumes, if we fail to leave a will or advanced directives, that our next of kin speak for us when we die, regardless of the actual relationship in life.
It has also been suggested that an opt-out system will be a slippery slope toward greater government control over our lives, but remember: We’re talking about a policy affecting our bodies after death. Death, generally speaking, is the end of the slope.
All of that said, an opt-out system is not a panacea. Spain, for example, which introduced its opt-out system in 1979, didn’t see marked increases in transplants until a decade later, when it overhauled and centralized its organ donation program. The country is now the world’s leader in organ transplants.
Available evidence also shows that a so-called “soft” opt-out system, which allows families to override presumed consent on behalf of the deceased, might be less successful in increasing transplants than a hard opt-out program, where families are not consulted. Alberta has taken the first step in adopting the former, joining jurisdictions such as Wales and Iceland, instead of hard opt-out regions such as Singapore and Austria.
All of which is to say: Presumed consent is one step among many to increase rates of organ donation, but it’s an important one. Provinces in Canada are finally starting to take it seriously. Inverting the notion of consent might yet be a libertarian nightmare, but it can’t be worse than the living nightmare of waiting for a transplant that might never come.
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Robyn Urback