Why don't more people register as organ donors - are we missing something?
In today’s post, Dr Emma Tinning, outlines some of her findings from her recent PhD on organ donor registration. Emma explores whether a change in framing the act of organ donation from a “heroic” act to a collective act would help address Australia’s low rate of donor registration through the current opt in policy.
Globally less than ten percent of the demand for transportable organs is being met and, unsurprisingly, illegal kidney vending markets continue to thrive in a number of developing nations. Very few people die in a way that allows for deceased donation and only 10-20 percent of those who do become donors. So (at least until we can create artificial organs) the only way to increase the number of transplantable organs is to convince more people to donate, either living for kidneys or deceased for other organs.
There are various policy approaches to address the shortfall in transplantable organs. In Australia we have an opt-in organ donation system – i.e., people must explicitly give their consent to becoming donors (families are also asked to consent when a potential donor’s wishes are unknown and where there is a signed consent form). Some argue that the “problem” of inadequate donation rates could be solved by switching to an opt-out system, whereby people are presumed to be willing deceased donors unless they have explicitly stated otherwise. Some of the countries with the highest rates of organ donation operate such systems. Others attribute the success of these countries not to their approach to consent, but the effectiveness and efficiency of their systems. The shortage of organs is seen as an organizational problem solved by better in-hospital processes that allow more potential donors to be identified, better transplant recipient matching etc. Arguments for legalizing living kidney markets also abound, although for the moment at least, they have gained little traction in most countries.
Beyond these system level issues, despite decades of ongoing promotion Australia has a relatively low rate of organ donation, with only a third of Australian adults registered as donors. Embedded in much of the promotion of organ donation here and internationally is the conceptualization of deceased organ donation as an altruistic “gift of life” – an act of kindness or even heroism. This framing is also evident in research into donation behaviour, which frequently focuses on the individual characteristics of donors to understand why people register. Consequently donation is often seen as the domain of the generous, caring or even self-sacrificing individual. Yet this depiction of donation does not adequately explain people’s reluctance to donate their organs, nor why particular population groups are less likely to register overall.
One approach is to think about organ donation not as a product of individual character traits but as collective behaviour. Richard Titmuss explored this idea in relation to blood donation over 40 years ago. There are endless theories as to why people behave collectively (and many do assume that collective behavior is ultimately founded on self interest). However central to most theories is the notion of trust – collective behaviour requires people to trust others will not take advantage of them. In the case of public goods (eg taxation, blood and organ donation) participants may also need to trust the institutions that are charged with delivering the goods. We need to believe that those institutions are not only competent but also fair and honest. Another key component of collective behaviour is the assumption of inclusion – we behave collectively when we believe we are part of a group or community of interest. I do not need to gain personally by contributing to a public good but I need to belong to a community that will benefit from my participation.
When we think about organ donation as a collective behaviour rather than (or indeed as well as) a product of intrinsic values, the relationship people have with their society and institutions provides some insight into why people may be reluctant to register to donate. This is borne out in a range of research showing institutional mistrust – of healthcare systems generally and organ donation and transplantation systems specifically – is a barrier to organ donation, particularly in minority population groups. Some perceive the allocation of organ transplants to be unfair, biased in favour of the rich, famous and white. Others worry that signing a donor card may result in doctors making less effort to save their life in the event of an emergency. It’s easy to dismiss these perceptions as superstition or ignorance, however for those who experience inequitable treatment within the health system, such fears are arguably quite rational.
Equally through the lens of collectivity, it is understandable that those who are socially excluded, lacking fair access to society’s resources and experiencing everyday racism and prejudice, may be less likely to participate in deceased donation programs. An Australian study within African migrant communities shows this to be precisely the case with blood donation – some participants even felt “Australians” simply didn’t want their blood.
What does this mean for policies aimed at increasing organ donor registration? Obviously it is beyond the capacity of policy makers in organ donation to address societal level/structural inequalities that lead to mistrust and social exclusion. However rather than focusing on the individual “heroic” donor, we could start to frame donation as a collective act – something we can all – regardless of ethnicity, socioeconomic status etc – participate in and all benefit from. We also need to acknowledge mistrust stems not necessarily from ignorance but from historical and ongoing negative experiences with social institutions. We need to work to increase trust in our organ donation and transplant systems across the whole of Australian society. Without addressing these issues, meeting the need for transplantable organs will remain an ongoing struggle.