Toi te Taiao: The Bioethics Council online case study

Before it was disestablished on 11 March 2009, the purpose of Toi te Taiao: New Zealand's Bioethics Council, was to:

• Enhance New Zealand's understanding of the cultural, ethical and spiritual aspects of biotechnology.
• Ensure that the use of biotechnology has regard for New Zealanders' values.

The Bioethics Council (BEC) was created following the report of the Royal Commission on Genetic Modification. The Council's Terms of Reference set out its role as an advisory body to the Government. It reports through the Minister for the Environment and works to engage New Zealanders in dialogue and discussion (rather than debate) about the cultural, ethical and spiritual aspects of biotechnology. The Council's architects felt that the complexity of the issues at stake required an approach based on multi-party, multi-stakeholder dialogue instead of traditional government consultation processes.

The Council used an array of resources to help it connect and engage New Zealanders in discussion. It disseminated information and published material on issues like nanotechnology, new organisms and human assisted reproduction. The Council also ran major dialogue processes on human gene modification, human genes in other animals and animal genes in humans, and human embryo research.

The Council understoodds dialogue as a conversation - rather than a debate - in which people who have different beliefs and perspectives seek to develop mutual understanding. A typical result from a dialogue process includes:

• softening of stereotypes
• development of more trusting relationships
• fresh perspectives
• new possibilities for interaction.

The Council has also developed criteria for choosing issues on which to engage the public. They were:

• public consciousness
• global problems
• controversy
• effects
• Treaty of Waitangi implications
• research
• government advice
• tractability
• what others are doing
• legislative vacuum.

The Council used various methods to start dialogue with New Zealanders. It hosted panel discussions, published books, held focus groups and workshops, and opened up online forums. It used a mixture of face-to-face meetings, online dialogue and information campaigns to engage the public

For example, it:

• commissioned a book of essays on human gene modification written by experts to support a public dialogue process
• held a public seminar with experts on human embryo research - the seminar was filmed and made available on the Council's website
• regularly conducted focus groups around people's impressions of biotechnology issues and their desires around how they can be engaged in dialogue - it held more than 30 focus group sessions and over 40 face-to-face dialogues and hui
• has operated three online discussion forums to support the overall dialogue process.

The Council used external expertise to run its processes.

• Two communications companies helped promote issues. However, the promotion is expressly not from an expert point of view. Their work was to invite people to join the debate and raise the profile of the issue in the media.
• Professional facilitators were hired to run events and Council members were present to listen to discussion. The facilitators were responsible for structuring the sessions, recording participant input, and recruiting specific groups and individual participants to ensure diversity in the groups that participate in the process.
• A professional writer was hired for the Council's report on xenotransplantation, to distil the findings in a readable format.

For a major engagement project in late 2007, entitled "Who Gets Born? Pre-birth Genetic Testing", the Council went through a staged process.

• Stage one involved framing the issue. This was so people could come to grips with the core elements quickly. Good practice in this area is to be careful about framing an issue too politically - this will push people into hardened positions, undermining prospects for further dialogue. The Council hoped the framing exercise would develop a problem statement for participants to discuss in the public deliberation stage. The strategy was to move people quickly from the ‘hopes and concerns’ discussion towards proposing between three and five value-based approaches and actions, and reflecting on the tensions between them.

• Stage two focused on public deliberations. The Council pursued a diverse group of participants, as well as large numbers (in the range of 1000) for its public engagement.
  • Participants went through a workbook on the issues as individuals.
  • They were given a tutorial about the rules of engagement.
  • There were then small moderated groups to further discussion.
  • National face-to-face sessions connected people already involved as well as new participants.
  • After exploring the choices it could make through the framing document, the participants' group were asked to choose what actions should happen.

• Stage three was the final report. It linked transparently to people's input and included an evaluation of the process. Moreover, to help the report have impact with decision makers - the Council expressly set up its process to appeal to them - the final outputs were developed to look like 'policy' rather than 'points of view'. The Council also worked to generate media attention to encourage a response from decision makers.

• The Council was expert in good processes. However, like many groups that fall inside/outside government, it had difficulty gaining traction with government decision making. It would be interesting to know what matters more to participants - changing their own perspective or changing the perspective of government. Presumably both. But the work of the Council does not fit comfortably into New Zealand's current 'governance framework'. Can we imagine an alternative? What would be appropriate?

• It takes a professional team to engage people well. This includes experts, facilitators, marketers/communicators and writers.

• The issues must be made understandable. The first process the Council ran, on human genes in other organisms, was hard for people to understand. Its second process, on the use of animal genes in people, gained more traction in the minds of the public. Peope could understand using animal tissue (such as a pancreas) to treat diabetes to prolong or improve a person’s life. Human genes in other organisms seemed more abstract.

• To start with, people were inclined to approach the discussion with hardened positions. Some had difficulty getting away from adversarial positions given previous experience with government. It took time to generate a more congenial discussion.

• It takes more than well structured information to have an impact on decision makers. They have to be ready to listen. For the Council, media coverage and media pressure helped get the attention of key decision makers. Its strategy of pursuing dialogue, diversity and representation should also help. Finally, it wants to empower other voices to speak the same message as the one coming out of the Council. All of these represent different aspects of the feedback cycle.

• The Council's report on Xenotransplantation is an excellent example of a 'high-fidelity' discussion summary. It creates a narrative around what was heard, but also has participant quotations in a continuous right hand column that follows the general summary. Creative graphic and information design help make the relationship between 'what was heard' and 'what was said' clear.