The Beginning of the End of the Human Race and the Start of a Transhuman Future?
Analysis of the New Zealand Governments Proposals to Amend the Human Assisted Reproductive Technology Bill.
By Tremane Barr
In a world first that will legally allow for the first time ever the creation of genetically engineered designer babies the New Zealand government has just released draft proposals for legislation that will make this possible through changes to the Human Assisted Reproductive Technology (HART) Bill. Another eugenic technology called Embryo Selection which allows parents to choose the embryo with the desired genetic inheritance they want will also be allowed. This combination of genetic enhancement and embryo discrimination will give scientists the power to eugenically change the future of human evolution in ways only dreamed about in Nazi Germany.
The most controversial aspects of the HART Bill which will allow germ-line genetic engineering and embryo selection has so far been missed by the media. Germ-line genetic engineering involves the genetic engineering of either the sperm, egg or embryo so that the modified genetic makeup is passed on to the baby and future generations. This could involve the insertion of new genes considered desirable or the deletion of genes considered undesirable. Embryo selection will allow parents to pick and choose which embryo with their personally desired inherent genetic characteristics they want implanted to come to term in a womb. An evolutionary threshold will have been passed if this Bill becomes law as scientists will be legally allowed for the first time anywhere in the world to genetically design babies.
The Medicine Act 1981 outlawed germ-line genetic modification, but this was weakened in 2002 Labour when they partially legalised it by restricting its use to only those the Minister of Health approved. The 2002 Select Committee report on this law noted that this change in law "will mean that procedures that may be of great benefit, such as those to prevent genetic diseases, could theoretically be authorised but procedures to generate designer babies for non-health reasons would be less likely to be approved." Just what they meant by “less likely” is now apparent in the proposed slippery slope of ethical decision making HART will allow (see later). And now they want to go the whole way and reverse the 1981 ban and legalise germ-line genetic modification through this bill.
Whereas in Nazi Germany they focussed their eugenic ideas on breeding a perfect master race by eliminating what they perceived to be “untermenschen” (sub-humans) by killing mainly Jews, disabled, intellectually handicapped and gypsies amongst others in concentration camps. In New Zealand the government claims their main eugenic focus is on helping to eliminate classes of genetically undesired people from ever being born, such as those with genetic diseases like Huntington’s disease and the like that lead to disabled and handicapped people. While embryo selection by itself is very useful in eliminating embryos with undesirable genes germ-line genetic engineering can both eliminate undesirable and add ability enhancing genes. The decision making process they want to put in place to allow this is specifically designed to allow an ethical slippery slope (more on this later) as the technologies and public acceptance of these eugenic measures improves over time.
What’s in it for the government? According to a 1995 New Zealand report on “Priorities for Genetic Services in New Zealand: A report to the National Advisory Committee on core health and disability support services”, it stated that, "New Zealand genetic disorders whilst individually rare constitute a significant contribution to morbidity and mortality when taken together as a group. Two to three percent of couples are at high and recurrent risk of having a child with an inheritable disorder. 5 percent of the overall population will develop a genetic disease by the age of 25. If conditions with a genetic predisposition like diabetes, coronary artery disease, cancer are included than it has been estimated that about 60 percent of the population will be affected doing their lifetime." Given that the health budget is already the biggest drain on government resources and likely to become worse with an ageing population the attraction of being able to eliminate up to 5% or more (60%) of the population from ever being born with genes considered to lead genetic diseases and thus being a financial burden on the government appears to have got the better of them.
The main difference between the eugenic program of Nazi Germany and the New Zealand government is that the Nazis could only use the cruder methods of simply killing those already born to avoid them having future undesirable children. Whereas, the New Zealand government is kind enough to let these same types of people live and have children while also “enabling” them to not pass on the undesired genes. As such, the government only wants to allow for the elimination of the genes from future people and not those who currently have them. Not to mention the obvious fact that the government doesn’t want to eliminate specific ethnic or religious groups entirely (e.g. Jews), unless of course you think of the disabled and handicapped as social groups with their own ethnic identities.
Not surprisingly groups like disabled people take a very dim view of germ-line genetic modification and embryo selection. Dr Gregor Wolbring a founder and Executive director of the International Center for Bioethics, Culture and Disability has called this eugenic approach “geneism” and points out that there is “no convincing arguments to point the way to an acceptable line regarding the use of predictive tests and eugenic solutions”. He points out that “The only protection we have available at the moment, the only way to avoid tragedy, is to be a society which does not view any human characteristic as a disaster, whether it be not having legs or having some other disability or being gay or being female. We need to have a place for every one and to support each other. We need to terminate the Animal Farm philosophy ; it can only lead to a bloodbath within the equality/human rights movement. We cannot work with each other when some view themselves as superior to others. The society we create is our only protection against the "gene-ism" (as in racism, sexism and able-ism) that in the end, we are told, will make targets of 60% of us all.”
The organisation Disabled People International met in October 2002 in Sapporo Japan to discuss just these types of issues that affect the lives of 600 million disabled people world-wide. On the topic of bioethics and the new eugenic technologies they declared:
We demand the right to be different
We believe that no parent has the right to design and select their unborn child to be according to their own desires and no parent has the right to design their born child according to their own desires.
We defend and demand a concept of "person" that is not linked to a certain set of abilities.
The HART bill does not recognise these rights and will undermine civil society if these eugenic technologies are allowed to become widespread like DNA co-discoverer James Watson wants them to be.
The genetic engineering of designer babies has been pushed most prominently in public by James Watson as part of the recent celebrations surrounding the 50th anniversary of the determination of the double-helix structure of DNA.
The government claim that their central purpose in legalising the genetic engineering of babies is so that potential therapies to rectify inherited genetic conditions such as Huntington’s disease can be addressed. However, this leaves a lot of room for interpretation, for example, Watson has recently been quoted as saying, “"If you are really stupid, I would call that a disease.…The lower 10 per cent who really have difficulty, even in elementary school, what's the cause of it? A lot of people would like to say, 'Well, poverty, things like that.' It probably isn't. So I'd like to get rid of that, to help the lower 10 per cent.… People say it would be terrible if we made all girls pretty. I think it would be great."
In Watsons recently published book “DNA: The Secret of Life” he wrote as part of this his thoughts on how designer babies would be a positive step forward for human evolution. Susan Lindee who reviewed his book questions, "how such a convoluted nexus of belief and prophecy [held by Watson] could gain cultural legitimacy, or even a sympathetic publisher. What forces made this incoherent tangle of mysticism, historical ignorance, religiosity, corporatism, exaggerated technocratic rationality, intemperance, and social naïveté plausible to so many people? Or even to James D. Watson?” Unfortunately, the problem is not just confined to Watsons personal opinion and Lindee points out that, “Watson is merely a potent sign of what has happened to the biological sciences in the last 50 years." The HART Bill is a sign that this belief system is now crossing over into politicians decision making in Parliament.
HART Decision Making Process
The ethical and safety concerns raised by the use of these Assisted Human Reproductive (AHR) technologies and others are dealt with in the Bill by the putting in place of a Ministerial Advisory Committee (MAC) and ethics committee. The MAC’s function is to provide specific advice on AHR to the Minister of Health who after consulting with Cabinet will approve “established procedures” which will also set any guidelines, regulations or restrictions within which AHR may be used. The ethics committee will then consider actual applications for these AHR techniques using the “established procedures” to guide their decision making. In an improvement on the current situation ethical approval for all AHR activities will be mandatory.
The purpose of putting in this decision making process is to, “establish a framework for ethical decision-making, rather than prescribing what may or may not be done in relation to procedures and technology that are known now.” To call this the start of a slippery slope policy that can lead to the full scale genetic engineering or embryo selection of designer babies on demand by parents some time in the future is not beyond the realm of possibilities. A key question this new system raises is why the recently established Bioethics Council is not to be involved in this process, despite these AHR topics being precisely the sort of thing it was set up to promote education and debate on in society.
The decision making process as outlined in HART is completely inadequate. What is needed is a strong regulatory authority to be put in place modelled on the Human Fertilisation and Embryology Authority in the United Kingdom. It must license and monitor the use of, and research into all, assisted human reproductive technologies, and to oversee a process ensuring wide-ranging public debate and input. This bill has less regulation and opportunity for public input on the genetic engineering of babies than what is currently necessary to get approval by the Environmental Risk Management Authority (ERMA) to allow the release of genetically engineered plants or animals. The new regulatory authority must allow for a public process of decision making that allows the public to make submissions on assisted reproduction topics as well as individual applications (not germ-line genetic modification or embryo selection which should just be banned). It must hold public hearings where all sides can state their cases before a decision is made on any application just as ERMA does.
The Times They are a Changing…
Just as Watsons and his supporters calls for the genetic engineering of designer babies is gaining ground the government has at this time decided to heed this call, and put in place this framework so that as “societal values can change over time” increasing access to these techniques will be allowed for. Or as they put it “To future proof the legislation the Government has decided to establish a framework for ethical decision-making, rather than prescribing what may or may not be done in relation to procedures and technology that are known now.” To call this the start of a slippery slope policy that can lead to the full scale genetic engineering or embryo selection of designer babies on demand by parents some time in the future is not beyond the realm of possibilities. However, on the international scene nearly everyone else is moving to ban germ-line genetic modification and all forms of human cloning.
United States to Prohibit all Human Cloning
In September 2000 the European Parliament declared: "There is a consensus within the community that intervention in the human germ line and the cloning of human beings offends against the ordure public and morality." The Bill does prohibit some AHR technologies and one of these is cloning humans for reproductive purposes. However, they want to allow the use of embryo cloning for non-reproductive purposes for use in embryonic stem cell research. This is where a human embryo is used for nuclear cell transfer (sometimes called therapeutic cloning) and allowed to grow for a number of days into stem cells which form the basis of all things that develop into an adult human being. They want to hopefully develop medical products derived from such stem cells, but we believe that it is unethical to tamper with the fundamentals of human life and this should be banned. This is in line with the US Human Cloning Prohibition Act of 2003 which has been recently passed by Congress and is due for ratification by their Senate soon. Furthermore, the United States and its allies are pursuing the development of a United Nations Treaty that would ban all human reproductive and therapeutic embryo cloning and the government would be acting in bad faith to legalise this before the United Nations has decided on this issue. The good news is already existing adult stem cells provide an ethically and medically viable alternative. Adult stem cells are found existing in a human body and the technology to use them for medical purposes is under development.
The ethical problems with the HART bill do not end there, however, the use of genetically engineered human/non-human hybrid embryos for research purposes is unethical and should be banned. However, it does ban the creation of human/non-human hybrid embryos for reproductive purposes, the implantation of human and hybrid embryos into animals, the implantation of animal and hybrid embryos into humans, commercial surrogacy (including advertising), and the commercial supply of embryos and gametes. As will the splitting (copying) of embryos where a new, identical embryo is split off from the original embryo created through IVF. Essentially, it is an artificial procedure that replicates what happens naturally in producing identical twins. This has the potential to be used in IVF treatment or to create embryos for research purposes.
The New Zealand governments moves are happening despite growing moves overseas by other governments to ban germ-line genetic engineering, particularly in Europe. The Council of Europe's Convention on Human Rights and Biomedicine (1997) prohibits inheritable germ-line genetic modification and limits the use of somatic gene transfer to therapeutic applications, it states:
“An intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic, or therapeutic purposes and only if its aim is not to introduce any modification in the genome of its descendants.”
Somatic gene transfer involves gene therapy on living humans to try and correct inherent genetic disorders. However, scientists have called for experiments using this technique to be limited to people who are going to die anyway as most gene therapy trials to date have lead to the death and worsening illness of many of its participants. The HART Bill does not overtly address the issue of somatic gene transfer even though if it eventually could be made to work it could be used not just for therapeutic reasons, but also to enhance healthy people. The International Olympic Committee has already banned the use of all forms of genetic engineering of people as a means of performance enhancement.
A problem not addressed in the bill is the one of genetic tourism which is where New Zealanders could go overseas to access banned or regulated assisted reproductive technologies. People must be actively prevented from utilizing these human assisted reproduction technologies overseas and should be liable for prosecution under HART. As such, the penalties for breaching the HART Act should be increased from a current maximum of 5 years in prison to a maximum of 10 years imprisonment. The financial penalty is proposed to be at a maximum $200,000 and should be increased to a maximum fine of $2 million. These new penalties would make them in line with the United States of America Human Cloning Prohibition Act of 2003.
The End of Homo Sapiens?
The proponents of germ-line genetic engineering and embryo selection paint a rosy future where they want this technology to be used so that individuals can be allowed to enhance their bodies, for example, through increased intelligence, athletic ability, better immune system etc. Although the NZ government are definitely not going to the same eugenic extremes of Nazi Germany they are going to allow technologies that will allow for the eugenic genetic “purification” of the NZ population. At present the NZ public have no idea that this is the direction the government is leading not just New Zealanders, but the whole human race. Only time will tell whether Labour will front up with the truth of what they are proposing and whether the public really want such a precedent to be set in New Zealand. So far only GE Free NZ (Inc.) has been the only organisation to publicly oppose the genetic engineering of designer babies until recent times, but there is growing public awareness of the issues in the HART bill and the government through the Health select committee is expected to be pushed to make changes.
Please write a submission to the HART Bill. Download and print out a Submission Form
For a detailed summary paper outlining questions and answers on the HART Bill as well as the draft law itself go to:
LINKS to Related Sites:
HOME PAGE FOR THE CENTER FOR GENETICS IN SOCIETY
Information on Human Cloning:
Information on Inheritable Genetic Modification:
Those Calling for Bans on Species-Altering Technologies:
Advocates of Species-Altering Technologies:
Other Human Genetic and Reproductive Technologies:
· Somatic Gene Transfer
· Preimplantation Genetic Diagnosis (PGD) and Screening
· Ooplasmic Transfer
· Stem Cell Technologies
History of Human Genetic and Reproductive Technologies:
ASSOCIATION FOR REPRODUCTIVE HEALTH PRACTITIONERS
This has an excellent webpage where it outlines in everyday words and explanatory pictures the basic science of: Genes, Ways to Make an Embryo, Stem Cells, Human Cloning, Human Genetic Engineering, Somatic and Germline Genetic Engineering, Pre-Implantation Genetic Diagnosis and Selection. http://www.arhp.org/patienteducation/index.cfm?ID=282
HUMAN GENETICS ALERT: http://www.hgalert.org/topics/hge/
Posthuman Possibilities and The Future of Intelligent Life? http://www.betterhumans.com/Features/Reports/report.aspx?articleID=2003-05-19-1