Bioethics Hui: Diversity, Process and Themes

Diversity

Māori have a strong interest in the development of biotechnology in New Zealand. The Bioethics Council conducted the first of a planned series of hui on the development and use of biotechnology with a specific focus on the transfer of human genes into other organisms. The diversity of opinions expressed within the Māori community reflects the broader diversity of opinion within New Zealand society as a whole. This summary highlights the key themes that have emerged through the dialogue and is supported in this report by the record of the dialogue from each of the hui.

Process

The Hui were held in the following centres: Whangarei, Central Auckland, Whakatane, South Auckland, Christchurch, Hamilton, New Plymouth, Porirua, North Shore, Auckland Gisborne, Rotorua and Otaki.

The hui were open to any group or individual who wished to participate. Facilitators were contracted from within the community of the respective hui. Most hui were also attended by members of the Bioethics Council whose role was to provide specific information about the role and membership of the Council and to listen first hand to the dialogue. Nationally, more than 220 people attended the hui.

Facilitators kept a register of hui attendees that included a list of email contacts so that participants could ensure their contributions were recorded correctly. Each event began by encouraging participants to introduce themselves to one another. After that was done, facilitators introduced both themselves, the other members of the hui evaluation team as well as the Bioethics Council member in attendance.

Participants were informed about the Council and its role in the hui process. Attendees were told that the objective of the hui was to promote discussion in the community on the issue of the use of human genes in other organisms. Hui members were told that the Council wants to promote public discussion on this issue and provide feedback from these hui to government.

Following this, facilitators provided information to each hui about genes and gene technology, including examples of existing gene transfer projects. Guidelines were offered to help each evening's discussion. It was emphasised that all points of view were valid and valued, that there were no right or wrong answers, and everyone was invited to have a say and to listen actively to others. The dialogue was encouraged in both English and Māori.

Finally, hui participants were asked to consider a series of questions that would help to guide discussions. The questions related to the use of GM technology and asked:

• Does human gene transfer benefit the community?
• Is there potential for this technology in the future?
• What are the risks for this technology?
• Does this technology transgress our spiritual, cultural and ethical values?
• Does this technology transgress Tikanga Māori?
• Who should decide how and when this technology is applied?
• Are there economic and scientific benefits from this technology?
• When should this technology not be applied?
• At what point is it acceptable for this technology to be applied?
• Are there legal implications for the use of this technology?

Themes

As mentioned above, hui participants expressed a wide diversity of views. Nevertheless, a key theme throughout the discussions was how decisions are made on the use and implementation of this technology and who benefits from the use of the technology. Additionally, Māori communities expressed a strong desire that their voices be heard when policies are designed and decisions are made.

Throughout the hui, several thematic currents emerged from the submissions and statements of the participants. The following section discusses five of these key themes. All of the themes related to the use of GM technology:

• Concern over development and use of human gene transfer technology in New Zealand and the need for caution
• The need for community participation in decision making where GM technology has the potential to impact on the local community;
• Balanced information on the development and implications of GM technology
• Concern over who benefits from GM technology and the ambiguous role of government in the development of biotechnology
• Expectations that community views are heard and reflected in decision making and policy development.

1. The Use and Development of Gene Transfer Technology in New Zealand

Most participants expressed a strong concern that New Zealand is trialling gene transfer technology and urged caution. Of particular concern was the use of GM technology for food enhancement and development. Whilst there is some acknowledgment of the medical benefits of biotechnology in existing products, there was concern as to where the boundaries of the technology lie. Issues of community consent emerged as participants questioned at what point scientists, developers of policy, pharmaceutical companies and the wider community could agree on what products were developed and for what purpose those products were developed for.

There was much discussion on the importance of Mauri and how GM science will impact on the Mauri of humankind as well as the Mauri of other species and organisms. A strong concern surrounded the potential impact of gene technology on whakapapa and human relationships if genes from other organisms are transferred into humans. Other concerns arose from a Māori worldview where all living things are seen as related and balanced. Some saw GM technology as creating the potential for imbalance. Participants felt that uncertainty of what the implications could be for future generations may outweigh the benefits to this generation.

Another theme is the perception that medical research has moved too quickly to embrace gene transfer as a medical solution and that not enough time or research has gone into reducing societal or environmental impacts on peoples' health and well-being. The focus on GM technologies has come at the expense of developing non-gene transfer medicines and remedies. There is also some cynicism that an approach to medical science that favours gene transfer is driven by a 'need to be the first' mentality within the science community as well as profit-driven motives amongst major investment and pharmaceutical companies. Having said this, there were some participants who recognised the medical benefits and stated that if this science was to save or substantially improve the quality of life of another human being, then it was worth developing.

Of particular interest in Māori communities is the issue of ownership. There is concern as to who owns the intellectual property that provides the basis of this technology as well as who has ownership over the genes themselves. The question was posed regarding those elements that may exist only within Māori or other first nations/indigenous people's genes and why gene banks around the world were interested in storing and researching the characteristics of these genes. The issue of international patents and intellectual property law was identified as a key concern for Māori communities who did not want to see a repeat of the challenges posed by international patents of indigenous flora and fauna.

2. Participation in Decision Making.

Māori want to participate in decision making related to the development and implementation of GM technology. Moreover, Māori want a decision making process that is participatory, transparent and binding. Participants expressed a need to include local communities in decision making, reflecting a belief that key decisions on investment and research are being made in isolation from both the wider New Zealand community and from local communities in particular. Some participants said that the current decision making framework highlights the risks of merely political or business approaches to decision making because such approaches rarely reflected long term considerations. Māori and Indigenous communities often thought in terms of future generations and were more participatory in their decision making.

There is a feeling that the Government has already made key decisions on the development of gene transfer technology in New Zealand and that the Bioethics Council's views and advice will have no impact. There was also some concern that the general public's view on genetic modification as reflected in the Royal Commission on Genetic Modification process in 2001 did not reflect what had since been developed in policy and legislation. It was clear that Māori supported the role of the Bioethics Council, but in addition, most wanted the Council to have more than just an advisory role. There is also a desire to have hapu and iwi at the local level involved in decision making. Participants also highlighted some difficulties with their participation in the Environmental Risk Management Authority process. Some of the difficulties included the short timeframe in which to prepare submissions and evidence as well as the cost and resources required to participate. Efforts to enhance local participation in decision making needs to address these issues.

3. The Need for Information and Education

Participants are concerned that most of the Māori community, in common with the majority of all New Zealanders, have little knowledge of GM technology. There is a clear need for balanced information that targets all parts of the Māori community from Kohanga Reo tamariki to kaumatua. Some participants stated that what information they had seen seemed to be biased toward scientific and medical benefits without any attention given to the risks or benefits of alternative approaches.

A lack of knowledge and information also contributes to a general apprehension and suspicion that developments in GM science are deliberately occurring under the radar screen of the wider community. Unless the community has a good understanding and knowledge of the technology, including its implications and risks, it will not be possible for informed debate and discussion to occur. There was also a clear acknowledgement that the Bioethics Council was being proactive but that more resources and support were required.

The most effective means of information sharing was through hui, wananga and discussion groups. Information sharing that used Māori media and was facilitated by and through the Māori community was the most effective means identified. Media that told a story rather than simply explained the science was also identified as effective. One example of this approach was the whakapapa and the human gene pamphlet distributed by the Council. There is a clear need for tamariki and rangatahi to have access to information through the school curriculum that was tailored and user friendly.

4. Who benefits? The role of Government

Another key theme throughout the dialogue was the question of who benefits from GM technology. Does the development of this technology have as its key focus the interests and welfare of the wider community, or is the focus scientific accolade and financial benefits? Whilst some participants stated that there were benefits to all sectors, there was concern that both the scientific and the corporate sectors had been wrong in the past. The implications for the community if scientists, government and the corporate sector got this technology wrong were considerable. There was also concern that the cost of products developed from GM technology would mean that only those who could afford new treatments and medicines would benefit.

There was discussion on the considerable benefit of GM technology for the Māori community in the present, particularly the development of insulin to control diabetes as well as other medical developments. It was also noted that much of the research that was under way would have a significant impact on the quality of life of many Māori if these developments were successful. Others noted that Māori had benefited from other medical developments including the transfusion of blood and organ transplants. However, a distinction was made: these developments occurred within humankind and did not involve the manipulation or transfer of genes from other species into human genes or vice versa. There was clear opposition to the transfer of animal or other organs into humans or alternatively, from humans into other species.

The role of government as both a regulator and facilitator of GM technology was also an important theme. Government has clearly included research and development of biotechnology as a key element of economic growth in New Zealand, identifying it as one of three priorities in the Growth and Innovation Strategy. There was some discussion on how government will reconcile decisions about the use of GM with the community and particularly with Māori, given the apprehensions that exist about the development and implementation of GM technology. This reinforced the view of most participants that decisions on development and implementation of GM technology should be based in the community rather than driven solely by government.

5. Policy development and legislation

Māori have been active in participating in government consultation on the issue of genetic modification. Whilst acknowledging the benefits to date, the message from Māori is clear: proceed with caution and ensure whanau, hapu and iwi are involved in decision making at all stages of development, from proposal to implementation. Māori would also like to see the Bioethics Council take on more than just an advisory role to government.

Participants noted that community participation in ongoing dialogue and consultation on genetic modification will suffer if policies and legislation do not reflect community views and aspirations. There is a feeling that consultation on this issue is 'Claytons' consultation and that the views of Māori communities as well as the wider community is not taken into consideration any way.

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