Kedgley Sue: Te Runanga o Ngati Awa Bill — First Reading 
Kedgley Sue: Te Runanga o Ngati Awa Bill — First Reading 
[Volume:619;Page:15062] 
SUE KEDGLEY (Green) 
: 
 The Green Party will be supporting this bill because it prohibits the worst excesses of artificial reproduction—namely the genetic engineering and cloning of human beings and sex selection for social reasons—and because the regime it sets in place is better than the totally unregulated free-market approach to assisted human technology that we have at present. 
Having said that I tell members that we are bitterly disappointed the Government refused to follow the approach set out in Dianne Yates’ original bill which would have set up an independent statutory authority to regulate fertility clinics and researchers similar to those in existence in the United Kingdom Canada and Australia and which would have required researchers and fertility clinics to get licences to carry out research into assisted human technology. 
While we are delighted that we have managed to strengthen the public consultation requirements of the bill we are also extremely disappointed that Government and most Opposition parties would not support our amendments to strengthen the bill and instead opted to set up one of the weakest most permissive regimes for assisted human reproductive technologies in the Western World. 
This regime relies on guidelines that do not even have the force of regulation that are likely to be pragmatic rather than based on fundamental ethical issues and that are so vaguely worded they will be difficult if not impossible to enforce. It is a regime that allows the ministerial advisory committee to approve controversial technologies without any parliamentary scrutiny. That is extraordinary! It is a regime that delegates unprecedented and virtually unlimited powers to an unelected and unaccountable committee to determine policies about reproductive technologies that could literally change the future of the human race. 
By setting up a framework for policy to be made in a committee that is not directly accountable to Parliament the bill breaches the well-established parliamentary principle that matters of policy and substance should be dealt with by Parliament and that only technical issues should be delegated to other committees outside Parliament or even to committees in Parliament. In our view at the very least guidelines issued by the ministerial advisory committee should have the force of regulation and should require approval from Parliament before they become policy and we will be moving amendments to that effect. One submitter summed up his frustrations about the weak regulatory regime in this bill by saying: “Dr Frankenstein would have found in the regulatory regime proposed in this bill ample opportunity to argue for the creation of his monster.” 
We are frustrated too by the fact that spending more and more money on assisted human reproductive technologies is being touted as the solution to growing fertility problems in Western societies when no resources are being allocated to research into the underlying environmental and other factors that have caused a dramatic drop-off in human fertility over the past 20 years. Declining sperm counts in men and an epidemic of endometriosis in women have been linked to environmental factors such as the dioxins hormone-mimicking pesticides and chemicals that are widely ingested in our food our water our homes and our soil. But instead of tackling these environmental causes of infertility we would rather focus on high-tech magic bullet technologies that are scientifically exciting. Proponents of these technologies paint a rosy picture of a future where they can be used to overcome the limitations of the human body but these same technologies can equally be used to create a horrific future—a future where more and more conception takes place in the laboratory and where we are constantly engineering humans in a quest to eliminate imperfections create the perfect person and improve the human race genetically just as one might a specialised breed of horse or dog. 
Sitting suspended from 6 p.m. to 7.30 p.m. 
SUE KEDGLEY 
: As I was saying these same technologies which can have such a power for good can also be used to create a horrific future—a world where those who can afford it can take evolution into their own hands redesign the genetic information of their children’s cells and ultimately create a master race of human beings while those who cannot afford to do that are left behind in the race. Already we have scientists like Lee Silver openly espousing the use of reproductive technologies for eugenic purposes for the creation of what he calls a post-human master race. He looks forward to a future divided between the “GenRich” who have been enhanced by having synthetic genes for healthy bodies increased creativity and so forth and what he calls the “naturals” who will be left behind still plagued with obesity heart disease alcoholism and mental illness. Another scientist Professor Joseph Fletcher proposes creating a hybrid species by mating apes and humans so that they can form an underclass in society that would be prepared to carry out the menial tasks that he believes humans deeply resent doing. 
Those scientists may seem way out on a limb at this point in our history but a recent survey of leading British researchers found that almost all the scientists were convinced that genetic engineering and the cloning of humans would soon be under way. Already our scientists are routinely cloning and genetically engineering animals with no questions asked or without any debate about it and many scientists eagerly anticipate a world where we have become essentially artefacts of technological creation and where we select our children’s genes literally from a catalogue. 
Officials rationalised the weak and permissive framework this bill sets up by insisting we had to put in place a flexible regime that could allow for changing social values and rapidly changing technologies. But the danger is that without a strong regulatory regime or parliamentary scrutiny this bill will permit medical technology to continue to race way ahead of the rest of us into uncharted and ethically troubling territories. 
One example of that is that the bill sets no limits on pre-implantation genetic diagnosis other than for sex selection. This technology of course allows fertility clinics to select embryos for specific disorders and only implant embryos without genetic fault. As such it offers hope to thousands of families affected by conditions like cystic fibrosis haemophilia and muscular dystrophy and we welcome its use in that way to prevent serious genetic disorders or diseases. 
But this technology also allows scientists to select embryos with “desirable” genes and eliminate embryos with “undesirable” ones for social rather than medical reasons. An amendment we put to try to change that was unfortunately defeated. By refusing to prohibit this technology for social reasons other than sex selection and by failing to draw a line between what is an acceptable and an unacceptable use of pre-birth selection the bill opens the way for this technology to be used for essentially eugenic purposes—to select embryos for athleticism or other characteristics that may become diagnosable by genetic pre-implantation technology in the future. 
That leaves the way open for an advisory committee to decide what genetic defects would be eliminated from the human population by embryo selection and what would not. That is why we are proposing an amendment that would provide clear guidance as to where that line would be drawn. We propose that the use of pre-implantation genetic diagnosis should be allowed only in order to select against severe genetic diseases. 
There are many other contentious issues that this bill fails to deal with such as genetic tourism—the importation and exportation of embryos—embryo-splitting and the derivation of gametes from dead persons. Under this legislation all of these intensely ethical and controversial issues will be left to an advisory committee and will not even be required to be scrutinised or debated in our Parliament. We find that absolutely incredible. It will all be left to an unaccountable and unelected committee of so-called experts. 
The other threat of course is that as we remove disease and genetic disorders through these technologies there is the potential for the erosion of human rights and in particular the rights of persons with disabilities. If we allow the technology to advance slowly but surely to the point where parents are allowed to design their children’s genetic inheritance we threaten those with disabilities and we threaten their right to be born in the future—as several impassioned submissions from the disabilities sector pointed out to us. 
We are pleased that the bill bans commercial surrogacies and that it stipulates that offspring of new reproductive technologies should be made aware of their genetic origins. We will be pleased to support the new amendment proposed by the National Party. 
Finally we would like to congratulate Dianne Yates for her vision and her foresight in getting this bill to the Health Committee. It is not her fault that the bill has been watered down to the extent that it has.