Section 2: Developing the project

There were three phases to the project: identifying the issues, choosing and implementing a process for public engagement and dialogue, and then developing the Bioethics Council's advice. This section reports on these processes.

Identifying the issues

Previous public discussions about the use of human genes in other organisms have largely occurred within a regulatory context, such as applications to ERMA and views expressed to the Royal Commission on Genetic Modification. This material provided some indications of the issues, but we were conscious that these political contexts would have very much shaped the discussion, and that there could be important additional considerations.

The Council was also mindful of the international research that highlights the importance of framing issues in ways that capture the concerns of the general public as well as the immediate and perhaps more pragmatic concerns of economic policy. We therefore chose three strategies to identify the full range of issues and to inform the development of the dialogue process.

• Focus groups were commissioned to work with members of the public who had no previous engagement with the issues. [Human Genes in Other Organisms: Qualitative Research Report]
• A series of essays was invited from people who have already considered the issue of human genes in other organisms and related issues.[Reflections on the Use of Human Genes in Other Organisms: Ethical, Spiritual and Cultural Dimensions] The authors came from diverse intellectual, cultural and academic backgrounds.
• The Bioethics Council's Maori Working Group held a number of hui with interested and informed Maori, and explored the possible consequences for tikanga and matauranga Maori when thinking about the transfer of human genes to other organisms.

All this work, plus the expertise of the Council, informed the preparation of the written material that provided the core information for the public engagement. The two key resulting documents [These are available at Issues In Focus: National dialogue on human genes in other organisms] were:

• Human Genes in Other Organisms, a six-page fold-out accompanied by a submission form
• Whakapapa and the Human Gene, an eight-page pamphlet.

In Human Genes in Other Organisms the Council identified the key issues and questions that it thinks underlie the more immediate issue of using human genes in other organisms, and provided some information about the technology itself, some of the related issues to consider, and some of the views it had already heard.

We felt that it was important to begin by stepping back from the specific question of 'Is it OK to use human genes in other organisms?' because responses to that question will be shaped (to some extent) by a bigger question: What is special or unique about being human? In other words, why might we even bother to think that human genes are special in some way?

We recognised that people bring to the conversation different ways of understanding the world, including cultural, ethical, spiritual and scientific viewpoints, and we invited people to talk about these. We also asked who should make the decisions. Only then were people invited to alert us to other factors we should consider.

Whakapapa and the Human Gene is a contribution by the Council, in Maori and English, to exploring the issues, particularly as they relate to Maori tikanga and matauranga Maori.

Choosing the process

Public engagement

The Council wanted a process that would:

• Create opportunities for people from a range of social groupings to explore the cultural, ethical and spiritual dimensions of biotechnology, to contribute their own understandings of the issues, and to gain an increased understanding of the views of others.
• Increase the Council's (and Government's) understanding of the challenges of creating dialogue, and to learn how this could be further improved.

We knew we could not hope to talk with everyone. We therefore made some strategic choices about the mix of people and strategies we adopted. These involved a mix of face-to-face situations and other 'open access' processes. In addition, we worked with an evaluation team in the early stage of the process to fine-tune our thinking about what we hoped to achieve. The three resulting central strategies for engagement were face-to-face dialogue groups, moderated on-line discussion and a public submission process.

Face-to-face dialogue

The Bioethics Council has been charged with promoting 'dialogue'. This is consistent with developments in a number of other countries, such as the UK, Europe, Australia, the US and Canada, where governments are recognising the need to involve the public in understanding and interpreting the social and ethical significance of the implications of new technologies and developments in science. Often 'dialogue' is used in the sense of government consulting with the public along traditional channels of input into policy decisions (e.g., submissions to government and regulatory authorities, select committee hearings, consultation on proposals). However, the Council was determined to engage in dialogue that genuinely seeks to build understanding, rather than persuading people to adopt a fixed position.

This kind of dialogue works on the assumption that agreement on a way forward often requires not simply more information, or tighter arguments, but a deeper understanding of how others understand a situation.

Dialogue provides a 'space' in which participants can, without fear of ridicule or personal attack, examine their own and others' deeply held convictions in such a way that all parties respect the nature of those values and try to understand what shapes and gives meaning to other people's lives.

The value to government of dialogue about biotechnology is that:

• The public has an opportunity to better articulate and understand the values and beliefs that they and other citizens think should underlie government policy.
• Government can get a better understanding of what is at stake for the public, the factors that shape public responses to developments in policy and technology, and the values the public wish to see expressed in political and economic decisions.

Twenty-eight face-to-face dialogue groups were held around the country. The Council chose some specific demographic groups (e.g., young people, older citizens, rural community, and Asian and Pacific peoples, Maori) and some communities of interest (e.g., ethicists, scientists, people from faith traditions, and the disability community). Some groups brought together people from very diverse communities of interest, and on one occasion we re-convened a group to continue the dialogue in a second session. Some meetings were promoted to the public; others were by invitation to targeted groups.

The Council stressed to participants that they were being invited to a dialogue - not to an opportunity to advocate for or to debate a particular position. This was also emphasised on the day by the facilitators. The vast majority of participants responded positively to this approach.

Where possible, participants were provided with the discussion documents prior to the dialogue session. All but four of these meetings were attended by at least one Council member. Each session was independently facilitated. The Council worked with two facilitation teams, one of which specialised in facilitation in tikanga Maori contexts. The facilitation teams prepared reports to the Council.

A moderated on-line discussion

A moderated on-line discussion was offered. This was open to anyone who registered, and ran between 13 February and 8 April 2004. One hundred and four people registered, and 27 of those posted messages, some on multiple occasions. The discussion was visited 1,839 times. The discussion was initially structured around the questions in the submission form, and additional strands were generated as required. The tone was respectful, and to some extent interactive. People made thoughtful contributions and responded to issues raised by others.

A public submissions process

The public submissions process was not a dialogue - there were no opportunities for interactions or, during the process, for contributors to hear the views of others. However, the Council felt that it was important to offer this additional opportunity for people to contribute to the Council's thinking.

The Council received 130 submissions. Of these, 24 identified themselves as representing the views of an organisation or group (five of which were from school classes). Two groups were formed specifically for the purpose of making a submission. Group size ranged from four to several thousand. The age range of the groups reflected the fact that some groups were school students, others represented groups that attracted specific demographics (e.g., University of the Third Age), and yet others wider community groups (e.g., the Hemophilia Foundation of New Zealand).

An analysis of the 'open-access' activities (on-line discussion and submissions) was prepared for the Council.

The report of the original focus groups, the collection of essays, the reports of the facilitators of the dialogue process and a summary of the submissions and on-line discussion are available on the Council's website.

Promoting our activities

This was the first major project for the Bioethics Council, and therefore required not only promotion of the project but profiling of the Council itself. Strategies here included the launch of a website, letters sent to a broad range of organisations and individuals inviting them to register their interest for mailing and activities, and speeches and visits by the first chair of the Council, Sir Paul Reeves.

The project was officially launched in February 2004, and an advertising campaign was run in all the major metropolitan and provincial papers and two Asian papers, on iwi and Pacific Island radio stations, and on various internet sites. In addition, press releases and articles made their way into the general and specialised media e.g., The Listener, Royal Society Alert.

The discussion material was circulated to all who had registered an interest in the Council's activities, and, along with copies of the essay collection, distributed to public libraries, schools and Citizen Advice Bureaus. It was also available on the website.

Bioethics Council consideration and responses

The Bioethics Council working group met on several occasions during the planning and implementation of the project, and took key issues to the Council for further deliberation. The working group played a central role in identifying key issues for the dialogue and considering the breadth of the responses. The Council was also informed by the conversations we had (among ourselves as we developed the project and with the public at the face-to-face sessions), the reports prepared by the facilitation teams, and the analysis by the secretariat of the on-line discussion and submissions. From all these sources we distilled the key issues that we heard, and developed our opinions and advice to government. These are discussed in the next two sections.

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