1. Introduction

Toi te Taiao: the Bioethics Council was established in December 2002 following a recommendation by the Royal Commission on Genetic Modification.

The Council’s Terms of Reference direct it to:

• Provide independent advice on biotechnological issues involving significant cultural, ethical and spiritual dimensions.
• Promote and participate in public dialogue on cultural, ethical and spiritual aspects of biotechnology, and enable public participation in the Council’s activities.
• Provide information on the cultural, ethical and spiritual aspects of biotechnology.

The Bioethics Council took the decision in February 2002 to undertake a public dialogue process on the cultural, ethical and spiritual dimensions of ‘human genes, in other organisms. The Council prepared for the dialogue during 2002 by conducting a number of focus groups, inviting various individuals and organizations to prepare essays on the topic for the Council and the wider public, identifying the key issues for discussions, and preparing a core document as the basis for its public dialogue.

The Council used a number of different methods to engage with the public. These included:

• face-to-face facilitated dialogues in small groups
• an on-line web based discussion and
• the opportunity for the public to make written submissions.

This paper reports on the submissions received and on the on-line discussion. A separate paper from the facilitation teams reports on the face-to-face dialogue groups.

The Report structure

This report summarizes the views expressed in 130 written submissions from the public, and the on-line discussion.

The structure of the report reflects the Council’s Terms of Reference, and its concern that all New Zealanders participate in a dialogue on the ethical, cultural and spiritual dimensions of biotechnology. The report includes sections on the following broad topic areas:

• Genetic understanding
• Place of humans in the universe
• Special/uniqueness of humans
• Values/beliefs
• Spirituality/religion
• Who should make decision
• Other factors

The invitation for submissions and on-line discussion

The Bioethics Council launched its public discussion on Human Genes in Other Organisms on February 13, 2004 and released a core discussion document: "Human Genes in Other Organisms". Other material was also available to support the dialogue: this included a pamphlet: "Whakapapa and the Human Gene" and a series of invited essays: "Reflections of the Use of Human Genes in Other Organisms: ethical, spiritual and cultural dimensions".

Members of the public were invited to make submissions to the Council and to participate in the on-line discussion via news releases and newspaper and radio advertising.

The Council first informed the public of its intention to receive public submissions and conduct an on-line discussion in a news release issued on 13 February 2004. Advertisements were place in national daily papers, Pacific island and Asian papers and announced on Iwi radio stations during February and March 2004.

Public submissions

Submission forms were inserted in all copies of the core discussion document, and available from the Council’s web site, public libraries and Citizen’s Advice Bureaus in New Zealand. While the Council provided a standard template for submissions, this was not a prerequisite for acceptance and the Council received a number of submissions that used alternative forms.

Submitters were asked to respond to four questions:

• Humans share many genes with non-humans. Yet many people see humans as essentially different from any other life form. What is special or unique about being human?
• There are different ways of understanding the world, including ethical, scientific, cultural and spiritual viewpoints. What sorts of values and beliefs are important when thinking about the transfer of human genes to other organisms? Who should make the decisions?
• Human genes can be transferred into different organisms, and for different reasons. What factors should we think about when deciding if a transfer of genes is acceptable?
• What other factors do you think we should think about?

Public submissions could be in electronic or hard copy and e-mailed or posted to the Council secretariat by 3 May 2004. Nearly all submissions received were from individuals with 5 being from school groups, and one identified as from an organization. With the exception of two submissions (both copies of academic papers by the submitters), all were equivalent of one and a half pages of type or less.

A total of 130 submissions were received.

On-line discussion

The Bioethics Council’s Terms of Reference direct to promote and participate in public dialogue. With the arrival of the world-wide web it is now possible to conduct discussions virtually in real time with participants who maybe dispersed over a wide geographical area. As a method of public engagement on-line discussion/forums are increasingly being used by local and national governments to seek the views and opinions of their constituents. Many believe that electronic discussion boards offer a way of encouraging participatory democracy. The Bioethics Council carried out an on-line discussion with the aim of giving as many people as possible access to its dialogue on human genes in other organisms.

The on-line discussion was launched at the same time as the dialogue events. It continued as a moderated forum until April 8. At that time, the discussion was down-loaded and then analyzed.

A thematic approach was adopted as a means of identifying common concerns amongst submitters, as well as recording other themes. Some of these themes were those profiled by the questions in the submission form, but there were a number of additional themes that emerged and are reported on separately.

The dialogue was initiated by the posting of 14 questions/comments. These included:

• There are different ways of understanding the world, including ethical, scientific, cultural and spiritual viewpoints. Who should make the decisions?
• What factors should we think about when deciding if a transfer of genes is acceptable?
• Other peoples’ rights
• Where should we draw the line?
• Animal experimentation
• What is special or unique about being human?
• If human DNA is not unique, then is it acceptable to transfer it about?

104 people registered for the discussion. Of those 27 posted comments, and 16 of those posted more than one comment. There were also over 1,839 visits to the online forum site. Topics and questions that were the most popular included:

• What factors should we think about when deciding if a transfer of genes is acceptable?
• What is special or unique about being human?
• Who should make the decisions?

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