4. Patterns, Issues and Weightings: Strong and Lesser Voices

4.1 Patterns

The dialogue process elicited a range of responses to the issues associated with the possibility of human genes in other organisms. At the end of the dialogues series, detectable patterns could be discerned from those responses. These patterns underscored key areas of concern. On some occasions the concern was unequivocal. There was, for instance, very strong support for developing a clear and fair process for deciding what research and implementation should be allowed to proceed. On other occasions, while the pattern of response was still strong, the character of response was much more varied.

Lesser voices were also evident. These represented both matters of concern to smaller constituencies and also more lateral reflections that may find broader support. The dialogue process did not provide the opportunity to test which comments should fall into which camp.

The following analysis identifies nine emergent themes and where appropriate reflects the dimensions of and the diversity within these patterns. [Numbers in brackets after comments indicate the number of dialogues within which an issue was identified.]

4.2 How to Decide: Risk and Processes

One over-riding pattern of concern was referred to in every one of the dialogue events (16). It gave expression to a number of concerns including:

• How should we decide what research should be allowed to take place?
• What trials should be permitted beyond controlled environments?
• What experiments, if any, should be enabled to take the step from testing to application?

Questions such as:

• Who decides what proposals should proceed?
• Who controls the process?
• How do we manage risk?
• How do we ensure safe testing?

were constantly being asked.

The Humanities group (Appendix 16) developed a tentative framework for vetting experiments. [On occasions a particular issue is given expression within the interim report, provided as an appendix. Where this is especially significant, the appendix is specifically referred to by number.] It argued for a case-by-case assessment with applications being placed before both ERMA and a social audit panel made up of experts and informed lay people. The panel would be competent to give conditional approval that would enable experiments to proceed within a context of ongoing evaluation. The group was concerned with specific questions such as:

• How is risk to be shared?
• Is risk an adequate basis for decision making?
• How do we evaluate the cost of delay and the failure to act because of uncertainty?
• Should the process be confidential?
• What role should regulation play?

The Re-convene group (Appendix 15) proposed a more detailed process for dealing with applications. This proposal exhibited some clear parallels with that of the Humanities group. The Re-convene group's proposed process was built around some key principles. These included:

• The need for clearly defined terms of reference
• A recognition that proceeding with caution includes the option of not proceeding at all
• The process must be driven by ethics not by commercial interests or benefits
• There needs to be an Ethics Council (other than the Bioethics Council) to hear and question the concerns and views of all stakeholders. The Ethics Council needs to be separate from but parallel to ERMA
• The Ethics Council should not be politically appointed but should be modelled on the judicial system making it independent of the state
• The Ethics Council should be proactive and forward thinking.

The group also asked whether there is there a place for some kind of "jury" system to sample public response to particular proposals.

Issues of safely, especially the possible risk to the ecosystem (7) and the consequent need for a controlled environment for experimentation (4) were significant elements in this pattern of response. There were similar worries about the likely irreversibility of any innovation (6) and the fear of unplanned for or unrecognised downstream effects (6).

The issue of the rights of participants in any experiments or implementation was also aired. Informed choice was considered necessary for providers of genes (and in the case of genes transfer between humans also the recipients of genes) (6) while a broader issue concerning ownership of both genes themselves and the technology of transfer was also raised. (4) Some groups were also worried about how to ensure security of the knowledge and technology against those who would use it for personal gain irrespective of human or environmental costs. (4)

An explicit call for appropriate respect for caution (3) was balanced by some that feared over-regulation putting up too many barriers and stifling both research and the positive benefits of the technology. (3)

In considering how we manage risk and what criteria we use for our decision-making, some reminded their groups of the need to take a global perspective. (3) These issues are already being addressed internationally. Overseas decisions will impact on what is possible for us. We can learn from international experience and we will be subject to the effects of decisions taken elsewhere. Can we also offer constructive models for others?

4.3 Motivation as an Ethical Criterion

All but three dialogues identified motivation is an ethical driver. (16) Why a party wants to develop technology was considered to be a key criterion for assessing whether the use of the technology would be ethical or not. As one group observed, "[any] concerns are relative to the aims and outcomes intended" (Appendix 16)

Possible motivations noted included:

• Altruism
• Commercial gain - profit
• Creating the perfect human being
• Intellectual curiosity
• Doing things because they are possible
• Frivolous enhancements

4.4 The Benefits of Technology

Almost all groups readily listed many potential medical benefits that could arise with the possibility of transfer of human genes into other organisms. (16) Notwithstanding the concerns relating to safety and motivation already identified, these were largely (though not universally - see 4.5 below) viewed as positive.

Support for the potential benefits of the use of the technology in food was much less evident. While some groups saw the potential for more efficient and effective food production (4) others expressed significant unease about human genes in the food chain (5) and some were concerned about possible shades of cannibalism. (2) Economic benefits were also identified by some participants (3)

4.5 Who Benefits?

Whether the benefits of technology using human genes in other organisms are medical, economic or for food production, most dialogue events raised questions about how we can ensure that these benefits are not restricted to an elite. (11)

Because the technology is inevitably in the hands of people with money, knowledge and power, is there not a danger that rather than shrinking the gap between rich and poor, the availability of this technology will only make it even wider? This raised questions for some about whether already stretched financial resources will be channelled away from less "attractive" uses that presently benefit people in need. The need to balance the benefits to individuals against the benefits to society as a whole always need to be borne in mind. (5)

4.6 The Need to find Common Ground Amid Differing Cultures

Most groups readily recognised that technology using human genes in other organisms poses cultural issues. (12) While some (2) felt a clear presentation of the "facts" would lead to universal ownership of a single approach, most were clear that the question of how the community can find common ground amid differing cultural understandings is one of the most pressing in the debate.

As the Pacific Island dialogue argued, "use of the technology as presently understood will disturb the "Pacific world view". Where there is a range of different cultural perspectives we need to find a balance between our diverse spiritualities." (Appendix 8)

Once the notion of "culture" is broadened, the question becomes perhaps even more taxing. An conflict between scientific and religious or non-scientific paradigms emerged. (6) The Faith Communities dialogue both affirmed the need for greater participation by religious and ethical organisations in the public process and asked about the extent to which the scientific community is open to other viewpoints from the broader religious constituency. (Appendix 3)

This theme was echoed in questions about the role of scientists and the extent to which they can be trusted (5), significantly also from the scientists themselves who noted the danger of not seeing the context within which they work. As one participant observed "the last thing to see the water is the fish." (Appendix 14) Several groups were worried about the danger of science outstripping ethics. (3)

4.7 Māori World-View

The cultural aspects of the Māori world-view were regularly referred to and one group specifically addressed the need to develop a process to enable understandings to be comprehensible within the context of the Māori world-view. (Appendix 9)

Another group was concerned about how we can "accommodate cultural/spiritual views within community decision making without their becoming "trumps"." (Appendix 16) Another group asked (perhaps more positively), "How much notice do we take of each other as treaty partners? Are we into continued, respectful dialogue?" (Appendix 2)

4.8 Education and Information

Almost all groups acknowledged a lack of understanding of the issues involved. Of these, many identified a specific need for more in-depth education. (10) In some cases misunderstanding badly prejudiced discussion. One participant in the Pacific Islanders dialogue admitted to being asked not to attend the event because within his culture "human genes" was read as "semen" and an upstanding member of the community should not be involved in a public discussion of such things. (Appendix 8)

Significantly, the youth demographic group had a stronger base understanding than many others did. Overall, transparency of information, effective information sharing and framing information in culturally coherent forms was considered vital.

4.9 The Nature of Being Human

A memorable moment in the dialogues occurred during the Asian event (Appendix 11) when a small group of four individuals, each from a different country, each with a different first language, each professing a different religion, explored together what was characteristic of being human.

The structure and framing of the dialogue process meant that most discussions explored this subject to some extent. (15) The discussion was often extremely interesting and valuable in unearthing the underlying views from which participants drew even if, unsurprisingly, little consensus was reached.

One recurring theme was the potential danger of under-valuing the present diversity of ways in which we give expression to being human if use of technology using human genes in other organisms encouraged us to move towards a standardised model of humanness. (3) Some argued against using the technology to assist people with genetic conditions on this basis whereas others, while recognising the threat to diversity, placed a higher value on the possibility of treatment.

4.10 A Concern for Animal Welfare

Many dialogues raised concern for animals' welfare. (11) The effect of human genes in other organisms on those other organisms themselves was a matter of concern for some religious traditions (Appendix 11) as well as many others. The question of how we are to judge animal welfare was also raised. (Appendix 16) The two key issues were:

• Do other organisms have the same status and rights as human beings?
• How do we assess whether or not having human genes transferred into them negatively affected other organisms?

No consensus was reached on either of these questions.

4.11 Respect for the "natural order"

Both religious and secular voices wanted to underscore the importance of respect for the established harmony of creation, understood either as the work of the creator or a natural process of evolution. (7)

One group asked how much we should seek to use technology to "cushion" us from reality. Others simply felt it unwise to change the natural order without compelling cause, whereas others still, from both religious and non-religious perspectives, spoke against any meddling with the established order.

4.12 Lesser Voices

A number of lesser voices came through the discussions and offered a range of other comments which included:

• There are no new ethical issues in this debate. This is really "just another social policy issue". (2) (Appendix 16)
• Ethical issues are too hard for ordinary New Zealanders. We aren't taught ethics at school and don't know how to approach the subject. (2) (And see Appendix 9)
• Government has a role to fund research that is explicitly in the public interest (2)
• A feeling of powerlessness (1)
• Would the transfer of human genes into other organisms in some sense "change the souls" of the organisms into which human genes had been transferred? Would a dog with human genes still have a dog's soul or somehow be fundamentally changed? (1)
• It would be immoral not to proceed with research and implementation (1)
• Human cloning should be banned (1)
• The real problem is human hubris (1)
• The whole discussion helps us re-evaluate our views on death (1)
• Uncertainty is inevitable (1)

[ Previous Page | Next Page ]