Biotechnology decisions too important to leave to experts – Sir Paul Reeves

Decisions about biotechnology are too important to be left solely to government, business or science. Sir Paul Reeves, Chair of Toi te Taiao: the Bioethics Council said today.

Sir Paul was launching the Council’s first nationwide public dialogue - on the use of human genes in other organisms. In the keynote speech in Dunedin to the New Zealand Bioethics Conference (hosted by the Bioethics Centre at the University of Otago) Sir Paul said New Zealand needed a better way than the GM debate to discuss the cultural, ethical and spiritual issues that arise from the rapid development of biotechnologies.

“The Royal Commission did a great job in very difficult circumstances, but I don’t think we want to have a Royal Commission every time a new technology presents critical ethical questions and I don’t think anyone really benefits from a shouting match.

“The Bioethics Council was set up to help New Zealanders have these crucial discussions in a way that enables us hear others’ viewpoints as we make up our own minds about very difficult questions.

“Some of these questions go to the heart of what it is to be human and where we draw a line between what is possible, and what as a nation we believe is right.”

The national dialogue on human genes will run until the end of April and will feature a series of face-to-face dialogue events and hui, an online forum and a submission process.

The process will be supported by a range of information and resources online at www.bioethics.org.nz and in a range of Council publications, plus by a modest national advertising campaign in newspapers, on radio and on the web, which begins tomorrow.

The Council also undertook initial focus group research on New Zealanders’ attitudes towards human genes, and commissioned essays on the topic from a wide range of interested parties.

Sir Paul said the Council had chosen human genes in other organisms for its first dialogue because it is an area of biotechnology that is developing quickly both internationally and locally and which raised some basic questions common to many biotechnologies.

“ERMA, for instance, recently had an application for research involving the use of human genes in cattle. It is also a technology which is currently used to produce most of the insulin used by diabetics in New Zealand and around the world.”

Sir Paul said the dialogue would be different from the consultation model most people were familiar with through government.

“Consultation is usually about whether a specific proposal should go ahead and the public is asked to respond to fairly tightly defined questions. In this case we are asking people to consider some fairly broad and fundamental questions and to think about whether, when, how and for what purposes it is acceptable to transfer genes found in humans into organisms where they do not naturally occur.

“We are therefore trying to foster a much more open debate about the issues - to get New Zealanders talking to each other as well as talking to the Council – rather than getting the ‘right’ answers to specific questions.”

The main outcome of the dialogue will be advice to the Government on the cultural, ethical and spiritual issues surrounding the use of human genes in other organisms. The Council reports to the Government through the Minister for the Environment, but has a high degree of independence, including setting its own work programme and priorities.

“While the report to Government can be seen as the main outcome, it’s also important to note that the dialogue is an aim in itself,” said Sir Paul. “Our job is to provide the information and the forum for ordinary New Zealanders to think about and discuss these issues and to make sure that government takes New Zealanders’ views into account when it makes decisions about how these technologies are regulated.

“We have no illusions about how difficult this is likely to be, but just because issues are complex and difficult to discuss doesn’t mean we should shy away from them.”

Toi te Taiao: the Bioethics Council

www.bioethics.org.nz

Background information

Toi te Taiao: the Bioethics Council

The Government established Toi te Taiao: the Bioethics Council in December 2002 to meet public concern that decision-making was not adequately addressing the cultural, ethical and spiritual dimensions of genetic modification and biotechnology.

The purpose of the Council is 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.

It does this by providing independent advice to Government on the cultural, ethical and spiritual aspects of biotechnology and promoting and participating in public dialogue on these aspects, and enabling public participation in the Council's activities. The Council’s advice is made public and can reflect diverse views - it is not required to provide advice based on a consensus of opinion.

The Council is lead by former Governor General and Anglican Archbishop Sir Paul Reeves. The other members are Dr Helen Bichan (health sector advisor); Eamon Daly (independent researcher); Anne Dickinson (National Director of Caritas and former chair of IBAC - the Independent Biotechnology Advisory Council); Dr Gary Raumati Hook, (scientific researcher and biochemist); Prof Sidney Hirini Mead (Kaumatua, scholar and expert in Tikanga Mâori); Waiora Port (Kuia and researcher);Graham Robertson (farmer, and former member of IBAC); Prof Ian Shirley (Professor of Public and Social Policy, Auckland University of Technology); Dr Cherryl Waerea-i-te-rangi Smith (teacher and researcher);. Jill White (former MP and mayor of Palmerston North and former Chair of ERMA); Dr Martin Wilkinson (senior political studies lecturer in Community Health and Philosophy).

The dialogue process

The Bioethics Council’s work on human genes is divided into three phases:

Phase 1: 'Identifying the issues' In 2003 the Council ran focus groups with people who have not previously thought about the topic, to identify their concerns. This information has been used to help design the discussion documents to reflect the areas of concern of ordinary New Zealanders. The Council has also published articles covering different perspectives on the topic from a range of people and groups already involved with this and related topics, and has provided a range of other resources to help people research and understand the issues.

Phase 2: 'Dialogue’ Phase 1 provides the basis for broad engagement with the public on the topic. In Phase 2, starting on 13 February 2004, all who wish to participate will be able to put their views forward for consideration and discussion. The Council has organised a series of 30 facilitated meetings and hui around the country to foster discussion. Just over half these are designed for particular sections of the community – for instance religious organisations; scientists; Pacific peoples; under 25s – and are by invitation. The rest are a mixture of hui and community conferences open to anyone who wishes to attend. There is also a moderated online forum at www.bioethics.org.nz and an online and paper-based submission process for people to express their views directly to the Council. Publications include a discussion guide and a booklet on “Whakapapa and the Human Gene”. All Council publications and a wide range of other resources are also available at www.bioethics.org.nz

Phase 3: ‘Consideration and reporting' The formal public dialogue ends when submissions close on 30 April, 2004 Council will then reflect upon the topic, and write a final report that will include its advice to Government.

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