Dave Snow challenges “presumed consent” for deceased organ donation.
In late April, Nova Scotia’s Health Minister suggested that the government might hold a public consultation on changing the rules for organ donation following death. Currently, Nova Scotians must ‘opt in’ to the organ donor program by providing written consent, or oral consent in the presence of two witnesses.
The proposed reverse onus provision would presume consent, making organ donation following death the default standard for Nova Scotians. And, “presumably,” there would be provisions for written refusal so that prior to death Nova Scotians could ‘opt out’.
Why implement presumed consent for deceased organ donation? The Nova Scotia government views organ donation as a praiseworthy activity and a greater supply of deceased donors as a laudable goal. However, Nova Scotians are not signing donor cards in numbers sufficient to meet demand, and neither public awareness campaigns nor the creation of a government-sponsored agency have brought these numbers up to desired levels. In 2012, 230 Canadians died waiting for transplantation. Evidence suggests that presumed consent will increase the comparatively low deceased donor rate, which will decrease the number of people dying on wait lists.
Presumed consent “assumes that everyone wants to donate unless they’ve registered their objections otherwise.” In principle, this seems odd. For most issues that concern our bodily integrity, we would scoff at the idea that because we would likely consent to some intervention, there is no need to actually elicit our prior consent (or, for deceased organ donation, to solicit consent from a spouse, adult children, or other legitimate decision-maker). So why is the idea of presumed consent appealing with organ donation?
The answer to this question is that presumed consent easily fits under the rubric of soft paternalism, which is currently trendy in policymaking circles. Popularized by economists Richard Thaler and Cass Sunstein in their book Nudge, soft paternalism relies heavily on reverse onuses and opt-outs. Soft paternalism empowers governments to make initial decisions on our behalf, from which we can subsequently dissent.
Policy prescriptions range from the small and uncontroversial (placing fruit before cake in cafeteria lines) to the more substantial and onerous (default opt-ins for employee retirement and drug plans). In these instances, soft paternalism’s allure is that it preserves the element of choice, but influences those choices in a way that encourages us to be better off. The key assumption is that governments know what is best for us, but we can, if we so choose, act against our best interests and reject the government’s initial choice.
Presumed consent for deceased organ donation, however, is one case where the end does not justify soft-paternalist means. The decision between becoming a deceased organ donor or not is qualitatively different from the decision between eating fruit or sugary desserts. For example, there are significant religious, ethical, and philosophical objections to deceased organ donation, not to mention considerable uncertainty regarding what constitutes death. Moreover, the fact that Canadians have expressed high support for organ donation and transplantation in principle is immaterial. There is a big difference between endorsing deceased organ donation in the abstract and actually signing one’s name on a donor card. Agreeing to become an organ donor following death is intensely personal.
Our government is unwilling to compel organ donation following death and so, instead, has positioned presumed consent—soft paternalism par excellence—as a middle-of-the-road strategy to recruiting more donors. However, deceased organ donation is one of those instances where the middle of the road is a dangerous place to be.
At the end of the day, soft paternalism is still paternalism. The underlying assumption in moving to presumed consent is that people won’t question or contest the status quo. If the government takes the initial decision out of its citizens’ hands, its intention won’t be to “nudge” Nova Scotians into having second thoughts. Instead, its hope will be that Nova Scotians won’t think much about organ donation, and so won’t exercise their choice to opt out, thereby increasing the number of organs available for transplantation.
While there is good reason to want to increase the number of available organs, there is better reason to respect the decision of those who choose not to donate. When it comes to organ donation, the government’s preferences should not come before the preferences of its citizens. If there is a public consultation on presumed consent to organ donation, Nova Scotians should understand what’s at stake.
Dave Snow is a Postdoctoral Fellow at Novel Tech Ethics at Dalhousie University.