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The psychological reasons behind NZ's low organ-donation rate

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New Zealand has a lower organ-donation rate than the United States, United Kingdom and Australia.

One of the big deals in getting approval to conduct a study concerns informed consent: people actively choosing to participate on the basis of enough information.

In most cases, this is fine. If I do a survey about what you eat or who you’re going to vote for, no problem – as long as I’ve told you what’s involved and what the research is generally about.

But if research is sufficiently innocuous and doesn’t burden people, wouldn’t it be great if you didn’t have to get people to actively opt in but instead to opt out if they don’t want to participate? On a purely practical level, that would be great for participation rates. But for some good – as well as not-so-good – reasons, the convention is that you can’t.

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Which is kind of funny, because some things do operate that way. What I used to call “sex ed” operates as an opt-out for our kids – it’s compulsory for schools to teach it, and your kids will participate unless you opt them out. The census – an example of survey research – doesn’t even give you the option: you have to do it.

On the other hand, organ donation is opt-in, and that is literally an issue of life and death.

According to Organ Donation New Zealand, there were – wait for it – 62 deceased organ donations in 2018, second only to 2017 (73) in the past decade. But even 73 doesn’t sound a lot and translates to a shade over 15 deceased organ donations per million New Zealanders.

Why don’t people opt in to being organ donors? University of Stirling professor Ronan O’Carroll is telling his audience the answers to this question against the backdrop of Waiheke Island.

Ronan O’Carroll. Photo/Supplied

Many people don’t like the idea of violating our “body integrity” – taking bits out just feels wrong. Not to mention that it’s just gross to even think about – the ick factor. And isn’t it just asking for it if you sign up to donate (what O’Carroll calls the jinx factor)?

Finally, do you really trust those squirly sawbones not to nudge you along the way, rather than save your life in an emergency, to make those juicy organs available to someone else? I’m making it sound a little loony, but medical mistrust is an important factor in organ donation attitudes. Though I don’t think we’ve had a case of nudging someone along hit the press, medical scandals in our history fuel such concerns.

The “unfortunate” cervical cancer “experiment” and the 2002 scandal of Green Lane Hospital keeping more than 1300 organs of dead patients without consent spring to mind. Between them, these psychological factors are better predictors of organ donation attitudes than the usual suspects: knowledge, education, and norms regarding what is expected around donation.

Our deceased donation rate of fewer than 13 per million in 2018 is lower than the 21 in Australia, 23 in the UK, 32 in the US and a whopping 46 in Spain. Spain operates an opt-out consent process for organ donation, and it may seem obvious that this is the reason for the higher rate.

But it’s more complicated than this. O’Carroll has been involved in reviewing the complexity as Scotland considers changes to consent. He and his colleagues have shown that countries with opt-out donation have, on average, higher rates of deceased donation. But they also have lower rates of living donation, such as giving your kidney to someone who needs one while you’re alive. The swings and roundabouts of life and death.

I’ll be watching Scotland with interest, because I won’t be surprised if this is something we’ll be talking about ourselves soon.

This article was first published in the April 20, 2019 issue of the New Zealand Listener.