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NZ Bioethics Council: Leaders in Participation

NZ Bioethics Council: Leaders when it comes to Participation

By Ian Steadman

On Thursday (28th August) the International Association for Public Participation (IAP2) awarded their Core Values Award to New Zealand's Bioethics Council. This award, given yearly, is presented to "recognize excellence and innovation in the field of public participation". – in other words, getting the public involved in policy making. In their, "Who Gets Born?" report, looking at the ethics and choices to do with pre-birth testing, they took the unusual step of using deliberative discussions rather than the usual consultations with experts.

"It's about not pointing to the decision of a group of academics," says Simon Wright, Senior Adviser to the Council. "Usually when a government wants to make a policy they'll ask a group of experts in the field, who will know the technical aspects but might not necessarily know the human side of things." Pre-birth testing is an area that is undoubtedly technical, but is also undoubtedly an emotional issue – when decisions have to be made when it turns out a child will be born with a serious illness, then the question of who gets to make the call on bringing the child to term can get highly emotional.

Deliberative discussions (at its most basic level a kind of discussion seminar between different groups) have been used to great effect with policy making in Continental Europe, where the idea of direct democracy is perhaps slightly stronger than in the Anglo-Saxon countries. "There'd been no discussion before of these issues, but you cannot leave these things in some vacuum," adds John Pennington, the Council's Programme Leader. "The Council's point is that there are cultural and political effects of these decisions, and we want to provide a public dialogue on this."

There were two stages to the deliberating process, online and off, starting all the way back in 2003 when the government commissioned the Council to investigate public opinions on the issue. It began that year with online discussion groups, advertised on websites like – and the response was quite large, with over 60 regular contributors to the website discussions writing a combined total of around 120,000 words, or the size of a hefty thesis.

The second stage was a round of face-to-face meetings across the country, again advertised in the local media and online. "We deliberately went to areas that usually don't get much interaction with the government," says Wright, "small villages and communities in rural areas, for instance, and local community leaders, parents, charities. The response was kind of overwhelming – they really loved getting involved. It can be kind of scary to walk into a room filled with complete strangers and have an intense debate about something like pre-birth testing, but by the end of the sessions people seemed almost relieved to get the issues off their chests – after one group a man came up and thanked us, because he said it was the first time he ever felt someone had listened to him."

But isn't there a danger than the people who see the adverts and sign up to these discussions are going to be the more extreme? The ones with the most 'out-there' views?

"No, not at all, and I think that that makes a fundamental mistake in assuming that there's a consensus to deviate from," argues Pennington. "Democracy works by discussion and compromise between differing views, to try and get the best for everyone. To suggest that there's already a middle ground just defeats the point. If you don't challenge these views then thought and politics stagnate, as they are now in many countries where people feel so disenfranchised that they just remove themselves from the process.

"We need to stop pretending that science gives us incontrovertible fact, and that in politics there's a similar foundation that everyone can point to as their basic premise. These deliberative discussions are a tiny part of that process of realizing we need to change our views of the world, which are still stuck in this post-Enlightenment rut."

So what did they find in the discussions (apart from that people love to be involved)? Any surprises?

"Not really," says Pennington. "What we expected was pretty much what happened – that, at the end of the day, regardless of the religious, ethnic, cultural, political, whatever reasons, people want the parents, and not the government or some anonymous board of doctors, to decide what to do with their children."

Wright continues, "People got out of it what they wanted. They were satisfied at being included, and the deliberations changed their views – they might not have changed their opinions of pre-birth testing, but it definitely helped them change their minds and empathise with different positions. And they valued the feedback."

So is this something that should be a bigger part of government decision making?

"There are question marks over traditional processes, and deliberative discussions are definitely acceptable in a democratic context," says Pennington, "and combined with the way it makes people feel empowered and part of the process, and that it's likely to give us a good result… it's about being a citizen and getting voices heard. So why wouldn't you look to multiple different approaches?"


Ian Steadman is an intern from the UK working for Scoop in the Wellington HQ.

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