2. Analysis of Public Submissions

The analysis of public submissions was undertaken by the Bioethics Council secretariat.

The Council secretariat processed the submissions by date-stamping, and entering contact details (where available) into a data base. The submissions were photocopied for the analysis team and the originals were filed.

Given the relatively small number of submissions received (130) a quantitative analysis would have had no statistical validity. A qualitative analysis of the submissions was utilized.

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 a number of additional themes emerged and are reported on separately.

Direct quotes from submitters have been used to ensure that the analysis has been faithful to the submissions as well as allowing the 'voices' of the submitters to be present.

Key themes

The wider context

While submitters responded to the particular questions that were asked, they often did this by referring to a wider context. This ranged from: the place of humans in the universe; to the understandings of genetics; to the significance of the social and economic context for decision-making; to understanding the role and social position of science. These things were important in framing the submitters' responses to each of the specific questions asked about the uniqueness of humans, values and beliefs, and factors to be considered when thinking about the transfer of human genes.

One submission, a paper from a New Zealand academic provides insight into the wider social context within which the community makes sense of the "post-human/post-natural world, where the boundaries between human and non-human nature have been eroded." This submission/paper explores some of the possible implications of a new sense of relating to non-human life forms and for possible responses to the breach of the boundary between the sacred (human nature) and the profane (non-human nature). It does so with reference to both recent research in New Zealand, and various post-humanist theorists.

Place of humans in the universe

A number of submitters saw humans as having a tendency to see themselves as the centre of the universe and this showed an arrogant attitude towards non-human beings. Some commented that this view overlooked the way in which humans are part of a much wider set of relationships that extend out into the universe. According to this view everything else that goes to make up our world and beyond has an important part to play and we must take great care that we don't upset this delicate balance.

Here we can see two ideas about humans that shape peoples' understanding: humans are the result of evolutionary development that has been taking place over millions of years and humans are part of the ecosystem. For those who see humans as both natural beings and as part of nature the use of genetic technologies may have long term implications for this relationship.

"We are an evolutionary entity which re-adjusts itself to its environment in which we live."

"As scientists, most of us subscribe to Darwinian notions of evolution."

"We are made of the same stuff as all other animals, plants and microorganisms."

"Genetics involves the fundamental instructions for all that lives. It is a living system that has been evolving for billions of years and is so complex."

"Modern man has lost touch with his environment."

"The most important considerations are whether then altered genes will have an unforeseen or uncontrollable impact on the natural environment."

"Evil is done because humans believe they are the superior life form and ignore the fact that all life on earth is interconnected."

One submitter extended the possible range of uses of genetic technologies by suggesting that because humans are only 'merely part of a twin spiral of DNA'; and because we are able to move genes about we will be able to transform ourselves into new and 'evolving' life forms.

Theological and cultural concepts were also used, (e.g. stewardship does not include exploitation) at times within a submission that also drew on biological concepts.

"Whether the universe came about by an act of creation or by a process of evolution it appears to be governed by immutable natural laws…all of life has a pattern, a hierarchy and a unique place in the scheme of things…. Rather [for many people]the material world is seen as the work of an intelligent all-powerful creator.…if humans are not the ultimate authority in the universe, our right to experiment with the fundamental building blocks of life is open to question."

Peoples' views of the risks of genetic technologies came from a broad context. They took the view that risks might be spread over a long time and the impact this might have on a 'living system that has been evolving for billions of years.'

Genetic understandings

Few submitters discussed in any detail the function or role of genes in a scientific sense. A number did comment on what might be important about a 'human' gene, or how genes help our understanding of what makes us human. One person commented on the consequence of using 'copies' of human genes.

"The placing of humane [sic] genes into other organisms raises the issues at what point is an organism classified as human - does it have to have human form, chemical composition of what percentage ratio…I would find the situation of creating a sub human species absolutely abhorrent for example 'humonkeys'."

"Because we share an estimated 90% of our genetic information with a mouse, every single piece of genetic material unique to humans is even more vital in separating, protecting and defining us as a species… The belief that a copy of a "human gene" that codes for a protein unique to humans (and primates) is still a "human gene" if it is put into a transgenic organism to make that organism produce a protein that is normally only found in humans (and primates)"

One submitter was clear that the human genome had no special value over other that of other species, and spoke of the 'genome' rather than the 'gene' as the unit of value.

"I don't believe that the human genome has special rights to be protected more than any other species. They should all be looked after, by legislation if necessary."

Some submitters discussed the issue of a human gene using religious or spiritual explanations; or using language of social value.

"Human genes are characteristic of each human, and represent the whakapapa of those who came before them."

"I believe we were created by God and as such we humans are accountable to Him for what we do in our lives. I believe he is the original writer of all DNA."

"Is the mauri of the gene the same as the mauri of a human being?"

One of these submitters was concerned that transferring human genes could lead to the development and spread of new diseases. Another was worried that if we ate something we share genes and proteins with we might be in danger of committing cannibalism. Because humans are complex systems transferring human genes could have unintended and unknown negative consequences.

"I also believe that cannibalism is defined by eating an organism that shares too many proteins and genes with your self. Scientific studies have linked cannibalism to spreading fatal diseases like Ebola, HIV, KURU and BSE."

The transgressing and or blurring of boundaries between the human and non-human world was a preoccupation with some submitters. Others defined human genes as unique to humans as a species and vital that this uniqueness was protected.

"By shifting human DNA into other animals or plants or bacteria you suddenly change a black and white law into shades of grey. Is a sheep still a sheep when it has human DNA inside it? Is a human being a human being if they have sheep DNA in them?"

Note that in some submissions the focus was not the 'use of human genes in other organisms', but the more generic issue of genetic modification. The concerns were the release of genetically modified organisms into the environment and the associated risks (e.g. of new zoonose diseases), or eating genetically modified food. Some rejected genetic modification under any conditions (genes from one life form should never be transferred to other organisms under any circumstances). Others supported genetic modification under some circumstances (medical uses) but were not prepared to support the release of genetically modified organisms into the environment.

Social and economic factors

A number of submitters were concerned that the push for economic gain was driving much of the research and promotion of genetic technologies. They were less concerned about the transfer of human genes to other organisms but were more concerned about multinational companies such as Monsanto forcing farmers and food producers to use GE seed.

"It is concerning that you even thought to phrase such a proposal like this. It indicates a lack of awareness of the corruption, bribery, violence and greed that dominates the GE industry."

"The argument driven by multi-national seed companies, that genetically modified seeds have the possibility of producing bigger yields, or more nutritious food, and consequently will feed the world's starving, is specious."

Another submitter raised a concern that 'technomonopolies' could control genetic technology and this could create 'exploitation (and) social instability. Maintaining New Zealand's 'clean, green' image was seen as important both from an environmental and an economic point-of-view. A number of submitters were concerned that New Zealand was in a position to utilize and develop genetic technologies for the economic benefit of the country.

For both the supporters of the technology and those who were skeptical of its value any economic benefits from genetic medication had to be seen in the context of social justice and a fair distribution of wealth.

"There's enough food in the world to feed us - it's an equity and one could say a spiritual problem - mankind needs to be motivated by a different set of values from the course now set."

"Our inability to feed everyone relates more to distribution and the fact that the poor cannot afford to buy food."

"I do not agree that this science should be controlled or monopolized by the international businesses so that only the wealthy can access the benefits."

Other economic concepts raised included patents and property rights; and issues of liability in the event of some adverse effect.

Understandings of science

There was concern with the role of science, and in particular its connection to commercial interests.

"I feel that science and research has to be independent of vested interests - i.e. ….producing something that will help their companies product line, profits etc…Pure science in my view is not swayed by dollar signs at the end or their research or by any material considerations and it should be for the welfare of all the people…no material consideration should be involved for pure science."

The tension between corporate research, the public good and the development of treatments of serious disease was reflected in the submissions. Some felt that science driven by the profit motive may take risks that lead to irreversible damage to the human race.

"Corporate sponsored research cannot be trusted and corporate sponsored projects are the most dangerous because they are a) most likely to pursue profits over safety and overrule the caution of their scientists and b) people are aware of this fact and so trust has already been eroded to the point where beneficial discoveries will be hampered by this lack of trust."

"I think it important that public good takes precedence over commercial gain…"

Special/uniqueness of human beings

Nearly all of the submitters described humans as being special and or unique, even if many of them believed in the continuity between the human and the natural worlds. Some submitters accepted that humans shared a significant number of genes with other organisms but consistently drew attention to the fact that humans show a number of specific characteristics.

One submitter recognized that one's views depend on what you think a human being is:

"If a human is just another form of slightly superior animal having evolved from nothing, then does it really matter what we do or use? If, on the other hand, you view each person as having being created by God and who will have an eternal future, then it is a very different matter."

Submitters defined specialness or uniqueness as:

a. characterized by biology

Although humans may share many genes with other organisms they do not share all of them. A number of submitters said that the uniqueness or special nature of being human rested on the particular arrangement of gene sequences, or in the way in which genes were used in the organism as a whole within the overall biological system.

One submitter thought that:

[our] "fundamental instincts (probably genetic) cause us as humans to usually value and respect members of our own species more than other species".

For some submitters the uniqueness and special nature of being human is due evolution, a process that has being going on for millennia.

For others human evolution provides no basis for giving humans a special status.

"While our genetic information may separate us slightly from animals on a basic level, our genetic evolution doesn't make [us] superior to animals."

b. characterized by cognitive ability

For a large number of submitters humans were special/unique because of certain highly developed capacities:

• The cognitive abilities of humans to self reflect and reflect on those reflections
• The ability to plan
• A highly developed creative capacity, coupled with a 'dark' destructive side.
• The ability to manipulate and control other humans and non-humans, and to use tools
• A strong rational element
• Ability to destroy our own environment

Only a few submissions made an explicit connection between their response to what is special about being human and the use of human genes in other organisms. One who did argued:

"The 'body' or 'cacase' is merely a chemical/biological support system for the brain…The proposed technology is not going to create new intelligence so I do not see it as an issue."

c. grounded in religious/cultural understandings

Several submitters identified their religious beliefs as the basis for a special status for humans.

"I believe we were created by God and as such we humans are accountable to Him for what we do in our lives. I believe he was the original writer of all DNA."

"God created us, we are the most complicated [sic] being, we have a conscience, self-awareness, and a spirit that lives on after death."

"Humans have the ability for good and evil…Evil is done because humans believe they are the superior life form and ignore the fact that all life on earth is interconnected…Our creator made all life forms separate and unique…"

• According to this view humans were made in God's image or likeness
• Stewardship

Some submissions drew on all three dimensions.

"Our level of satisfaction, our ability to talk, our souls are different, it's the way our genes are arranged that makes us human."

Values/beliefs

In relation to what sorts of values and beliefs are important when thinking about the transfer of human genes to other organisms several concerns were paramount to submitters. There were certain explicit values (e.g. relief of suffering, social justice), and there were also concepts drawn (implicitly or explicitly) from cultural and religious traditions

Public good and relief of suffering

The idea of transferring human genes was supported by a large number of submitters, although with suitable caution. If it could be demonstrated that it was for the public good e.g. relief of suffering, many submitters were prepared to allow developments to continue.

"Biotechnology for the purpose of relieving human suffering in the areas of fatal/debilitating inherited diseases/conditions in my mind is a divinely humane progression of medicine."

However a number of submitters were opposed to using the transfer of human genes to other organisms if this was to be used for enhancement purposes for example to produce 'designer' babies.

"…are we trying to construct a perfect society that could discriminate against the "imperfect", and thus rob us of all those who have had disabilities have to offer: Einstein = dyslexia, Steven Hawking = motorneurone disease."

Other submitters indicated that it was because our values were 'misplaced' that technologies like gene transfer were being developed to fix problems that we have created.

Social justice

Social justice was another issue submitters drew attention to e.g. feeding the hungry, access and fairness and equity. Some submitters were concerned that technologies which might benefit people would be monopolized by commercial interests.

Impact on future generations.

A number of submitters were concerned that not enough value was being put on how these technologies might impact on future generations. This reflected a general sense that too much emphasis was given to short term goals.

Disinterested science

The value of disinterested science was another issue a number of submitters pointed to. They were concerned that science and scientists were developing too close a relationship with commercial interests, and commercial imperatives were coming to dominate science.

"Research should be undertaken freely……….Corporate sponsored research cannot be trusted and corporate sponsored projects are the most dangerous."

Science should be for social good and not for profit. One submitter raised concerns over the possibility of technomonopolies emerging which would determine what research is undertaken, why and be in a position to commercially exploit their position.

"If genetic research creates technomonopolies we should be worried about this as the ultimate result is exploitation, social instability and the degradation of the vigour of the science involved."

There was a suggestion by some submitters that scientists couldn't be trusted to give a complete, fair and accurate account of science. It was often other organizations such as Greenpeace who had raised the alarm over issues such as pollution.

One submitter proposed that science and technology were divinely given attributes and not to use science and technology for human benefit could be morally wrong.

Nature in humans and non-humans

Many submitters raised the issue of nature in humans and non-humans i.e. the environment and other organisms in relation to transferring human genes. Generally people were opposed on the grounds that:

• It contravenes God's natural laws.
• All life on earth is interconnected - humans are already responsible for the destruction of many life forms and as we are uncertain as to what effects the transfer of human genes might have on the ecosystem then to continue with gene transfer would be an irresponsible act.
• Gene transfer is a violation of nature; unlike pollination or cross fertilization which were perceived as natural, the transfer of human genes was seen as an act of aggression on something that is essentially benevolent.

"Selective breeding may involve humans manipulating the genetics of other species….Cheating, overriding damaging or destroying these biological safeguards regularly, will have consequences, is it worth the risk."

• Because of the unknown risks involved in transferring human genes the environment could be under serious threat.

"Past risk assessments have held little recognition of the rights of the individual to not be exposed to the agent in question…It has taken some 20-30 years before the untoward effects of some chemical products, hailed at the time as the saviours of world hunger, to be shown to have risks not anticipated when first manufactured."

There was a sense in which modern man had lost touch with the environment and was putting at risk the natural order. Some submitters thought that transferring human genes was another example of humans moving away from the natural world and the dangers of this.

"All individual life forms are unique. Humans have the ability to act for good or evil. Humans have done much to destroy life forms on planet earth, including themselves. Much destruction has come about through "science". Evil is done because humans believe they are the superior life form and ignore the fact that all life on earth is inter-connected."

Animal welfare

A few submissions highlighted animal welfare.

One submission pointed out the potential benefits of the technology for animals, and another that:

"Our culture already assumes that animals exist to be used and killed for mankind's purpose."

But other submissions see the use of this technology as taking away the rights of animals.

"…the act of artificially transferring DNA is a violation of the organisms involved….this violation is particularly true or animals. They are not asked for their consent, we merely do as we see fit with them, thus taking away their rights."

"they [the animal/plant/organism] unlike humans DO NOT have the choice, may experience extreme mutilation, discomfort, pain as they try to expel/deal with the foreign genes forced upon them. This is extreme abuse of other living organisms and exploiting their inability to defend their uniqueness."

Religious, spiritual or cultural concepts

Some submitters used religious, spiritual or cultural concepts in the way they approached the topic of human genes in other organisms. These concepts suggested a higher authority or creator who had laid down the overall structure of the universe and its contents, i.e. humans, animals, plants etc. Many submitters were opposed to the transfer of human genes to other organisms as this would be defying God and upset a natural order that has existed for millennia. People had no 'right' to transfer human genes; this was taking advantage and exploiting something they had no moral authority to undertake.

"It is a powerful point, is it not, that we may be able to improve the health of chronically ill individual by genetic technology? But that does not alter the fact that we are meddling with nature. Belief in God means we obey his laws and though He did not explicitly say "thou shalt not proceed with gene technology", I am sure there are references in his teachings which indicate that we must no take advantage of our fellow creatures and that we must respect His creations. Stewardship does not include exploitation."

One submitter discussed the concept of 'clean' animals, and sought to understand which movements of genes between species would therefore be acceptable.

Another brought together their understanding of God as creator with their understanding of copyright law - one of their reasons for believing one should not shift genes from one species to another is that since the author (of DNA) is God, and God is eternal, the copyright law still applies.

One submitter simply stated,

"If God had wanted a particular trait within a species then he would have put it there at creation."

And another

"I feel this possibility [of putting human genes into other organisms] is ethically and spiritually wrong. The human body is unique and not meant to be tampered with and exploited in this manner."

Who should make the decisions

This question provoked a wide range of responses. However, no submitters elaborated on how their particular political solution would operate. Suggestions included everything from holding binding referenda to decisions being left entirely to individuals. Three broad themes emerged from the submissions:

• Those who suggested decisions should be made by a small group of informed people, with knowledge of the science but also including people with expertise in ethics, religion and cultural viewpoints and orientated to the public good.
• Those who thought the whole community should decide by way of a public referendum.
• Those opposed to government or church intervention.

"Controlled by a mixed board of say 3 scientists and 4 lay people. Religious and cultural viewpoints must be considered."

"Decisions need to be made by referendum."

"Mothers should decide the DNA of their offspring… Farmers should grow anything they like. Religious cranks and nosey parker governments should mind their own business."

One submitter stated that the Bioethics Council was just window dressing by the Government.

What factors should we think about when deciding if a transfer of genes is acceptable?

This section identifies a number of other issues, not already identified in the above themes, which were raised within submissions.

• Ensuring appropriate controls and regulations are in place
• Individual rights v community rights
• Motivations: why, who benefits, why this pathway, what needs are we responding to
• Liability issues
• Mutation
• Human genes in the food chain
• Medical benefits
• Precautionary approach
• Does it correct a situation we have created
• Will the environment benefit
• How will it effect us in the future
• The Treaty
• Economic
• Social
• Risk and risk management
• Issues of choice.

[ Previous Page | Next Page ]