4.0 Understanding the Participants

The purpose of this section of the report is to demonstrate the context from which and within which participants form their views. Understanding this context is essential to understanding participants' reactions to the concept of human genes in different types of living things.

Participants selected to take part in this research project are people who have not previously engaged in debate on genetic experiment. The groups all began by participants being asked a general question about what matters they feel affect them in some way that is important to them, or to those they care about. This was to gain an understanding of how aware, and how engaged they are in the topic,

Participants raised concern on a variety of matters before mentioning genetic developments, indicating that genetic experiment is not a top-of-mind issue. Concerns that are mentioned include global, local and personal matters.

Global matters included: disease (especially Sars), war, terrorism, world wide political turmoil, famine, world economy and the environment (pollution, lack of resources, genetic engineering). George Bush, the american president, and the spread of american idealism were frequently mentioned as concerns.

Personal and local matters included: disintegration of society (e.g. values, morals, no sense of community), crime, justice, politics, education, ageing, greed, materialism and immigration.

These concerns also get raised when genetic engineering (and human genes in different types of living things) are being discussed. Therefore, understanding some of the underlying concerns surrounding these matters, including genetic engineering, is required to understand participants' feelings about the use of human genes in other living organisms. This report, therefore outlines feelings about these matters prior to discussing the use of human genes in other living organisms.

Overall, knowledge of biology and science is low - with an average of one person in each group having some knowledge about genes and genetic engineering.

Because of this lack of knowledge, discussion on different elements of genetic engineering and other procedures tend to get discussed as one. For example cloning, stem cell research and organ transplants are all discussed as one topic.

4.1 The Essence of Being Human

Participants hold one common belief, which is that there is something unique about being human that sets us apart from all other species. Language used to describe this are words such as "special", "precious", or "sacred/he taonga te tangata".

There is a tendency to discuss "specialness" in terms of what participants see humans as having. This includes:

• a soul
• individuality/uniqueness
• personality
• intelligence/ability to think
• the ability to control other species
• conscience
• feelings
• spirituality
• imperfections
• civilisation (build houses, wear clothes)
• having power over all other living things.

Some participants refer to Christianity and the view that "God created us in the image of himself"/that "we are God's creation" as evidence that anything that looks like a human is special. Another: "I just sort of think I believe the Lord made us".

Others take a less literal view of "God" and indicate that "God" does not have to be a Christian "God", but that there is something that has created humans, and that this makes them sacred. The concept of evolution sits within both of these views in that it is accepted that humans developed over millions of years.

Māori and Samoan women tend to use traditional religious terms to explain the "natural order" that "God ordained".

A feeling of being special tends be a personal feeling for some, in that it relates to only themselves or their immediate family - they have little concern for humankind generally. With others it is a world-view that causes the participants to desire improvements for people living in impoverished conditions. These views are illustrated in the following discussion on genetic engineering:

"There are risks (with genetic engineering), but I just think of the positives. It would be so good for the poorer nations of the world because let's face it, they don't have enough to eat at the moment ..."

"It comes back to breeding (rather than lack of food). They need to learn how to curb their breeding. ...They're not prepared to do anything. ... At the end of the day ... you've still got to have somebody pay for it (produce)... If the poor nation hasn't got money, I'm not sending it there."

"They can sort that out overseas, it's not our problem. We're a small nation and you've got to look after number one, don't you, to start with."

Farmer

The Māori perspective is one of wide responsibility, which they have the language to articulate well, and which encompasses people, the environment and spiritual wellbeing. The concept of kaikiakitanga is strong, ie that people are part of a greater whole and that they have the responsibility to do their part to protect this. If humans destroy themselves through their own inventions, the concern about the effect of this on the greater whole is as important as the concept of human extinction.

Human cloning and stem cell research are frequently bought up in relation to the discussion of what it is to be human. There is a strong perception that cloned children will not have "special" human qualities and that they cannot therefore be regarded as human. It is felt that they would not have the same rights as humans who are not cloned and would therefore be "second class citizens".

Also, human cloning is seen as eliminating the natural self selection (survival of the fittest) and therefore potentially developing a weaker race.

There is also strong rejection of cloning on the grounds that it is seen to be trying to create a perfect/master race (Hitler's "blond haired, blue eyed" image is frequently mentioned).

Overall, participants reject the concept of perfect human beings (whether developed by cloning, or other means). The term "designer babies" is used alongside cloning as a negative term:

"... I see all these debates happening about designer babies ... And that is wrong, I just think that is so wrong. It is making a false world you are going to have all these beautiful people around, it is not natural."

Auckland Māori

Some participants feel particularly fearful that foetuses might be used for cloning. Two male participants whose partners have had their pregnancies terminated feel strongly that "that should be the end of the line" - that no part of those foetuses should be used for any purpose.

Māori and Samoan women talk of the implication to lineage if parts of a person are used in someone else. Lineage is not discussed as such, among men generally, but several men attempted to explain the importance of having control over their genetic future, i.e. over "part of me". European women participants do not express these concerns.

Although, there is a feeling that "human life is precious and shouldn't be played around with", the degree to which participants accept genetic interference varies among individuals, and within individuals, depending on purpose. Participants struggle to reconcile their feelings:

"You want people to explore and you want to learn, so on one hand there's something saying, don't mess with it and the other one is saying, 'that's progress'."

Samoan Women

Some participants see benefits of a gene that causes ill health being isolated and dealt with to prevent this ill health. Others talk of the benefits of being able to isolate a gene that causes people to become criminals. These participants are open to preventing babies with this gene from being born.

4.2 Nature and Spirituality

There is a strong feeling, especially among younger participants, that nature is always better than man made, or engineered, because in-built safeguards are felt to be the result of evolution. There is considerable concern over changes to nature that participants feel they have no control over. Participants tend to feel that there is a natural order and that "things happen for a reason". It is felt that evolution takes place over millions of years and that interfering with that process is dangerous.

"... I think that things should just develop naturally. It is just how the world is meant to work."

Student

"I think everyone's response is that it is just wrong and the reason why scientists argue the other way is because they are thinking about it scientifically and technically, but I just kind of believe in natural law, but I just think it is one of those things you innately know as well and it is just your gut reaction to it."

Student

Simply believing something to be wrong is sufficient justification by women, who hold an opposing view. This is shown by their lack of attempt to rationalise their beliefs once stating them. This is in contrast to men who took attempts to rationalise their beliefs. One woman went a step further by articulating the view that belief in itself is part of nature:

"... the fact that you believe it is wrong is justification for your belief. You could almost say that my belief of not having it is ingrained in me in my DNA itself."

Student

Middle aged and older participants who do not like interference with the natural order tend to talk about it negatively as "playing God". However, others believe that humans have been given (by God) the ability to make new discoveries and that they should be free to use it.

Some participants accept changing the natural order of evolution if they perceive benefits in the outcomes. Others are less inclined to perceive the same benefits. For example, some participants see the removal of a terminal birth defect as positive. Others (particularly Māori and Samoan participants) believe that, "you've chosen to have the child whether it's going to have a disease or not" and therefore there is no reason to interfere.

A less prevalent view, is that that any problems that can be caused by interference with the natural order can be corrected.

Overall, there is a tendency for younger people to put their faith in "nature" and for older people to use "God" as a term for an intangible something that somehow controls the order/circle of life. One female student talked of "That almost spiritual connection with nature". For other women being close to nature allows them to connect spiritually, even if they have no faith or belief.

Young European women participants, in particular, use the term "natural" to explain what is good and use "unnatural" as a negative term.

4.3 Food

Several participants express their concerns with scientific changes through what they eat. The "natural is better" concept is strong. When some concerned participants are discussing their concerns with food they tend to discuss additives (e.g. colour, preservatives) together with genetically engineered, indicating that not everyone has separated them as different matters.

Participants' main fear is that they do not know what they are eating, particularly whether or not the food is genetically engineered. This is both for spiritual (e.g. animal genes in food) as well as for health reasons.

There is a strong perception that genetically engineered food is inferior because it is genetically engineered (i.e. not because of inferior quality) and that only the rich will be able to afford organic food which is seen as superior.

4.4 Social Order

Some participants view interference with the natural order as part of disintegration of society. It is mentioned along with prostitution law reform, lowering the legal age of buying alcohol, marriage being optional and a lack of community.

The prospect of producing babies that are not born (i.e. produced in a laboratory) is regarded as potentially breaking the fabric of society further, in that there is the potential for children not to have parents, and therefore not develop appropriate behaviours.

A further concern is that society will not be able to cope with the changed population makeup if the balance is changed. For example, if modern science allows people to live longer, the question is raised about who will carry the burden of supporting them.

Participants feel that changes to society are beyond their control and therefore cause discomfort. This is especially so with scientific advances:

"I believe technology is going faster than what we can all personally cope with"

Rural

Overall, concern about social disintegration is prevalent in all age groups and is cross cultural.

4.5 Perceived Motivations for Scientific Development

Overall, there is deep mistrust about motivations for scientific development. It is felt that political agendas, profit/greed, war/terrorism and scientific excitement override more positive motivations.

Political agenda

Some participants believe that "they" will protect them from people who are a danger to them and that only those with good intentions will get the resources to conduct scientific experiments. These participants are not clear about who "they" are but believe there must be people who own this responsibility. When pressed "the government" tends to be mentioned as being responsible by these people. However, others believe that the government is more concerned about political gain than protecting New Zealanders and/or that the government cannot understand the issues fully enough to make good decisions. In particular it is felt that the government does not know where to draw the line.

Profit/Greed

The belief that profit overcomes all other motivations is strong:

"If you said to a scientist, I want you to do this and here's an unlimited budget and by the way, you're not to come out of this room that's ten metres by ten metres for the next eight years, until you've done, it, the guy will do it. Everybody has a price."

Farmer

Less affluent participants believe that the economically powerful use new discoveries to improve their own financial situations at the expense of the poor. This is felt by some on a personal level (i.e. that they personally miss out). Higher income earners tend to be more concerned for people living in impoverished countries. Overall, participants believe that politics and greed will prevent new discoveries benefiting the poor.

Monsanto is frequently mentioned as greedy and powerful. An example given of this is that Monsanto created corn seeds that produced corn that, once harvested, cannot be used to grow more corn, thereby tying the poor nations that it was sold to into repeat purchases of new corn.

Some participants fear scientific developments being available to people who would do them harm, e.g.

"At the end of the day French farmers might say, we've had enough of New Zealand butter imports, what is the quickest way for us to get rid of it. Let's breed something that they can't kill"

Farmer

Terrorism

Germ warfare and terrorism are major concerns. Participants are fearful that scientific discoveries that have the potential to do harm will get into the wrong hands, e.g. "some nutter", or "another Hitler". Although some participants believe that there are controls in place to prevent this happening, most believe that anyone who was determined enough could obtain everything that they need to do widespread damage.

Scientific Discovery

A feeling exists that there are scientists who will go as far as they can with no thought for the damage their discoveries might cause - that they are so excited by their discoveries that they will pursue experiments regardless of outcome.

Some participants feel that New Zealand cannot safely undertake scientific experimentation because it does not have the resources to do so. Others have a sense of safety through living in New Zealand and want experimentation to take place and be properly tested overseas. They perceive that by the time it gets here it will have been properly tested.

4.6 Desire for Information

Although some participants have deep feelings of concern for scientific changes that are taking place in their world, they feel that it is too much to try and understand. These people tend not to want to know more:

"I do watch the news, but I tend not to get involved in this stuff"

Farmer

Some who have attempted to understand scientific changes have found the information available too difficult and have given up trying to read it:

"The only thing is, with the media ... they will get some professor to write an article on it and you look at it and read the first two paragraphs and turn the page because you can't understand it."

Student

"... I don't really understand when they talked about that corn mutation, or whatever it was, I didn't understand, does that mean people are going to die. I just didn't understand because I don't think I am getting enough information

Urban Māori

Others expect to be told of developments that can change their environment and some want pamphlets produced by Government departments.

No participant had sought information on genetics unless it was specifically related to studies or occupation (e.g. farming).

The internet is mentioned as a source from which to get information if it was desired.

Overall, most participants want to know the argument and make their own decisions. Some choose not to engage. Reasons given for this are:

• lack of time
• a sense of powerlessness that makes them feel "why bother, it's not going to make any difference"
• lack of information that has been put into a form that the layperson can understand.

4.7 Trusted Informers

There is a deep mistrust of information about technical advances that is made available to participants. There is a general mistrust of the government, the media and scientists. Participants particularly want to get information from either different sides of the matter so that they get balance, or from someone who is seen as "being in the middle", i.e. not extreme. "Greenies", for example are not respected because they are seen as taking an extreme view.

Government Information

Some trust government information, others do not. This is because it is felt that government has its own agendas (e.g. economic growth) and human safety is not always put first.

There is also a strong feeling that the government often does not have a firm grasp of issues. This is partly because of a perceived lack of communication:

"I sat there and watched the Minister of agriculture and the Minister of Science, or somebody, and I wanted to say, 'Get real, what's happening'. To me there is no consultation and that's the way we feel."

Farmer

The Media

Although daily newspapers are a common source of information, participants are sceptical about the truth of the information. There is perceived:

• lack of sound investigative journalism
• political bias
• sensationalism
• manipulation

Participants are also highly sceptical of information that comes out of america, where it is perceived that the media is one large manipulation instrument.

Non news programmes on television such as "60 Minutes" and "Fair Go" ("something that represents the people") are trusted more than are the news programmes (Young Urban).

TV personalities, Kim Hill, Brian Edwards and John Campbell are mentioned by some as having the good of the people at heart and therefore are good at getting to the truth.

Scientists

Some feel that scientists working in a university, can be trusted to be knowledgeable and unbiased. However, there is also the view that because they are now being funded by overseas people they are not able to remain objective.

Overall, it is felt that scientists are not there for the good of the people. Instead it is felt that they are either commercially driven, or driven to discover something new - whether it is good or bad:

"It does seem sometimes that the scientific community as a whole, world-wide, are always trying to one up the next person."

Auckland Māori

Part of the unease with scientists is that it is felt that they want to use technology only because it exists, and not because it is necessary. It is felt that in most situations less harmful means could be used. A medical example is that there is a belief that prevention rather than a cure should be used:

"I get really frustrated with people having lack of responsibility for their own lives. I see so many kids around - the parents don't have time, they don't make the time to take the kids off sugar, and they don't take them off processed food. So we see them having steroid shots and it just gets worse and worse and worse."

Rural

"I think they (should) be trying to attack the cause, as opposed to engineer and cure. Most of the cause is the food that we eat."

Samoan Women

Magazines and Journals

Consumers Institute is also considered to be unbiased and therefore trustworthy.

"Overseas journals" such as New Scientist are seen as more authoritative and tend to be read by older participants.

People With Ties to the Community

Older Samoan women tend to want the information passed to their children as they feel that it "is too much for my head", and they feel that the younger generation need it for the future.

They do, however, appreciate receiving information in a group where discussion on the topic is possible, and where the information is being delivered by someone with ties to the community:

"It may be youth officers who are dealing with the youth to deliver the information, people at the grass-roots. People with ties, not management people, but the grass-roots people who have empathy with the children and know how to soothe them so that the children will receive the information."

"It also depends on the person delivering the information as well. To deliver anything to the Pacific people, to the Samoans in particular - I spent about five hours just explaining one question because you really have to know them first and earn their trust."

Samoan Women

Newspapers and radio talk-back, in the Samoan language are also important ways that they obtain information.

The Church

Some participants indicate that they would look to their church for information. However, this tends to be to get the church's view, so that they can put other information into context. It does not mean that they will necessarily follow the church's view point. Some church goers, are the most accepting of genetic experimentation as they can see the potential benefits to humans.

4.8 Responsibility for the Future

Ko te wawata kia pai a papatuanuku mo nga whakatupuranga, literally translated is: "The dream is to protect the earth for future generations." Māori, in particular, believe that people have a duty to protect the earth (including all living things) so that the natural balance is preserved for future generations - Ko te wawata kia pai a papatuanuku mo nga whakatupuranga. It is a long term view and is seen as part of the natural order which has balance between man the environment and the universe. For the most part this is embodied in the concept of kaitiakitanga (e.g. to look after/protect) - there is an obligation to protect.

Non Māori tend to express it less explicitly, but do indicate concern about the future of the land and that one seemingly minor change (e.g. irrigation) can have major and unforeseen effects. When speaking specifically about the land, they tend to look to protect the earth for the next 30 to 50 years. However, when they talk about the environment, which includes the earth, their concerns about doing damage that cannot be repaired is of greater concern and is a long term view.

These views and fear of the unknown long term results of genetic engineering cause both Māori and non Māori to regard genetic engineering as negative.

Non Māori farmers have a strong feeling that the land they own is theirs, and they resent any interference from government or anyone else who attempts to dictate how they use it. One ex-organic farmer is particularly concerned that it will not be possible for producers who wish to remain organic to do so if genetic engineering is allowed to develop further in New Zealand.

4.9 Genetic Engineering

Understanding of genetic engineering varies widely, with only a few participants knowing anything about the process. Most have very little knowledge, but do have feelings about it. Some participants claim to have missed out on information about it and indicate that until it is obviously affecting them, they have no need to become involved.

Although the potential benefits (e.g. produce more food more efficiently, medical advances) are applauded by some, the overall feeling is one of extreme concern.

Participants have strong concerns that science (including genetic engineering) has the potential to destroy human life. Mostly this is because participants believe that the natural process of evolution is being interfered with, and/or that scientists risk creating something that will have unknown, long term effects.

There are strong arguments both for and against genetic engineering and its value to New Zealand's economic well-being. Some farmers, for example, believe that New Zealand's economic position will improve through being able to produce more, and produce it more efficiently. Others believe strongly that producing organic crops is New Zealand's prime opportunity.

Some participants believe that there are strong alternatives, such as bio-diversity, that have not yet been fully explored and that are less potentially harmful to the environment.

Others consider it "trendy" to be anti genetic engineering.

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