Report from the Chair of the Bioethics Council, Jill White

This report aims to give readers an overview of the work of Toi te Taiao: the Bioethics Council, its development since the first meeting in December 2002, and the issues it considers.

The formation of Toi te Taiao: the Bioethics Council came about following a recommendation of the Royal Commission on Genetic Modification in 2001. The Government accepted the need for a Bioethics Council charged with enhancing New Zealand's understanding of the cultural, ethical and spiritual dimensions of biotechnology and ensuring the use of biotechnology has regard for the values of New Zealanders. This goal is about the wider issues of biotechnology and not just about genetic modification.

The Council is similar to other government advisory bodies emerging around the world in response to the potential of biotechnology to revolutionise the way we live. Biotechnology cuts across many areas of government, but the Bioethics Council reports to the Minister for the Environment and the Council's small secretariat is part of that Ministry.

The Council's focus is upon the cultural, ethical and spiritual dimensions of biotechnology. As part of that focus, our role is to inform the public, to promote public dialogue, and to provide independent advice to the Minister.

The Council is also expected to maintain a future watch or 'alert' role; that is, to help provide early advice on significant emerging issues for the public to grapple with.

The first year's work was, in part, determined by issues immediately in front of the Council and established the pattern of working in small 'working groups'. Submissions were made to two Bills being considered by Select Committees. These were the New Organisms and Other Matters (NOOM) Bill and the Human Assisted Reproductive Technology (HART) Bill. At the same time the Māori Working Group came together and started to build connections and explore the needs of Māori in relation to participation in dialogue about biotechnologies.

In August 2003, the Council submitted a future watch report on Nanotechnology, an area of science with a number of potential applications in biotechnology and involving the potential for widespread ramifications. There was also a wide-ranging discussion within the Council about issues around emerging technologies to delay aging. These topics may be returned to in the future.

The major work undertaken in 2003 was preparation for the first public dialogue project, "The Cultural, Ethical and Spiritual Dimensions of the Use of Human Genes in Other Organisms". Planning for this event included both the content of material to be provided for discussion and the processes for dialogue. Council thinking was informed by focus groups and essays commissioned from leading thinkers. Two discussion documents were prepared, Human Genes in Other Organisms and Whakapapa and the Human Gene.

Early in 2004, twenty-eight dialogue events on 'human genes in other organisms' were held throughout the country. Although the topic was controversial, it was obvious that people appreciated and enjoyed the opportunity to listen and share views in an environment that was respectful and non-confrontational and was perceived as enhancing the democratic process. The Council also ran an online discussion and received submissions.

A full report on this public dialogue, the content of the hui and meetings, together with the conclusions and recommendations of the Bioethics Council, was presented to the Hon Marian Hobbs as Minister for the Environment, in August 2004.

2004 also saw preparation for the Council's next dialogue project. This explores the cultural, ethical and spiritual dimensions of xenotransplantation or animal-to-human transplantation of cells, tissues or organs. The dialogue events for this have occurred in the first half of 2005.

It was with regret, but an understanding of their other commitments, that the Council said farewell to three of its Māori members in mid 2004. This loss included the Chairperson, Sir Paul Reeves. His experience and wisdom were invaluable to the Council in determining its path forward. With the appointment of two new members and a third appointment pending, the Council is now well placed to build on its early work and commence significant projects going forward, engaging with Māori on cultural, ethical and spiritual dimensions of biotechnology.

The dialogue experience built up during these first two years has been of great value. We are now in a position to share this experience with others who are exploring these types of processes. However, these dialogue events are very demanding of financial resources and of people's skills and time. The Council realises it can only manage a small number of such events in relation to the number of emerging issues. Consequently, we are looking at complementary ways of carrying out our tasks while planning a work programme into 2006. Opportunities to work with other organisations could be further developed, for example, in relation to the 'future watch' role.

Planning into 2006 has involved the commissioning of research papers on Human Genetics and the Commercialisation of Biotechnology in New Zealand. The purpose of these papers is to inform the Council on wider contextual issues and thus our thinking about future areas of work. Consideration is also being given as to how the Council could undertake further work flagged in the 'human genes in other organisms' report, initially in the area of animal hybrids and other manipulations of animals.

Council members are conscious of the need to keep up to speed with developments in the biotechnology field. The main responsibility for this has rested with the secretariat which has provided a flow of articles and regular summaries of what is occurring around the world. Both Council members and the Secretariat have attended and presented material at conferences in New Zealand and Australia. Useful links have been developed with similar international organisations, for example, the Nuffield Council for Bioethics in the UK.

We have been extremely fortunate to have received the skill, commitment and support from our secretariat, led by John Pennington. Their workload and that of members of the working groups has, at times, been very heavy. This has taken its toll. While the question of sustainability has been discussed from time to time it is, as yet, unresolved. This problem was highlighted at the end of 2004, when two further Council members announced, with regret, that other commitments meant they did not have the time required by their Council responsibilities.

The dilemma relates to the nature and mixed role of the Council. For instance, it has governance responsibilities as well as a hands-on role in the management of projects. The latter is partly a function of a secretariat that is stretched too thin and overworked, and partly the keen interest of Council members, who often desire close involvement in work that matches their skills. The challenge the Council faces is to work through these issues - which I have confidence we are doing. It is a great team to be part of.

Jill White, Chair
Toi te Taiao: the Bioethics Council

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