Date: 19 October 2000
HUMAN GENETICS DREAM OR NIGHTMARE?
Two items from ISIS:
1. Announcing New ISIS Report - See <www.i-sis.org> for full text
The Human Genome - The Biggest Sell-out in Human History
Governments in the industrialized countries have handed over the human genome to private ownership together with the most triumphant hyperboles to boot, notwithstanding that it was mapped and sequenced at great public expense.
A multi-billion bio-informatics ‘goldrush’ is on, as private companies scramble to mine the public database for genes to patent and to assemble their own proprietary databases which are sold at exorbitant fees to subscribers.
Beneath the hype, bio-informatics is a desperate attempt to turn the exponentially increasing amount of information into knowledge. The human genome programme has dominated the scientific scene for the past ten years, raising hopes and fears in equal measure. Is it likely to deliver?
No, says Dr. Mae-Wan Ho, the author of the report, especially if it continues to be misguided by a discredited genetic determinist paradigm that serves to divert attention and resources away from the real causes of ill-health and to stigmatize the victims. We are already witnessing the resurgence of genetic discrimination and eugenics that have blighted the history of much of the last century.
Bio-informatics suffers from the reductionist fallacy that knowledge will automatically arise once information is exhaustively listed. Molecular biology is suffocating from information overload.
"What we need is a quantum leap to a new paradigm for understanding the organism as a coherent whole. Otherwise, human genome research will remain a scientific and financial black hole that swallows up all public and private resources without any return either to investors or to improving the health of nations."
Dr. Mae-Wan Ho
Institute of Science in Society
Institute of Science in Society and Department of Biological Sciences, Open University, Walton Hall, Milton Keynes, MK7 6AA UK (Based on a lecture given at the Human Genetics Forum, September 20, 2000, Quito, Ecuador)
"To-day, we are learning the language that allowed God to create life." That was how Clinton announced the human genome map on 26 June 2000. The media were full of similar hyperboles. It was a feat comparable to landing on the moon. It will produce cancer cures. It will enable us to identify all the ‘bad’ genes that cause diseases as well as the ‘good’ genes that make us intelligent, beautiful, good at sports....; so the bad genes can be eliminated and good ones put in to enhance our genetic makeup. It will give us personalized medicine and a prescription of lifestyle based on our genetic makeup.
Ten years ago, when the Human Genome Project was being sold to the public at the cost of $3 billion from the United States taxpayers alone, they promised us the blueprint for making a human being when the human genome is sequenced. Now, dozens of genome sequences later, geneticists have no clue as to how to make the smallest microbe, nor the simplest worm, let alone a human being.
In case you have any lingering doubt, up to 95% of the human genome may consist of what is known as ‘junk DNA’, because geneticists have no idea what functions it serves. They cannot even agree on how many genes there are. The estimates range from 30 000 to 100 000. The human genome map announced in June was only 85% complete in the coding regions only.
In reality, the Human Genome Project is the biggest sell-out in the whole of human history. It is the privatisation of the human genome financed by the public purse, with many disastrous consequences on the social and moral fabric of civil society.
Human genes and cell lines are being patented and owned by corporation; among them are those taken from indigenous tribes under false pretext, without informed consent. These are being advertised and sold on the internet. Human embryos are grown for the purpose of providing cells and tissues for transplantation. Human germline gene therapy and human cloning are being contemplated.
Last year, the first ‘human’ clone was created, by transferring the genetic material of a human cell into a cow’s egg. Thankfully, the scientists destroyed the experiment at 14 days, which is the current legal limit, otherwise, we would have been faced with Frankenstein. Mary Shelley’s brilliant novel, Frankenstein, was not just a parable of the arrogant scientist playing God, it is also about mechanistic science out of control.
The mechanistic paradigm of western science has dominated world politics and the policy of nations for centuries since the industrial revolution, not only through destructive technologies, but especially through the way the world is perceived and shaped. It sees nature as isolated atoms jostling and competing against one another in the Darwinian struggle for survival of the fittest.
Organisms, including the human body, are regarded as machines, and so
there is no limit to what can be manipulated and exploited for corporate
profit. It is all of a piece with the neo-liberal economic theory
that is promoting and justifying globalization - the removal of all barriers
to trade, investment and finance - so as to enable corporate monopolies
to better exploit human beings and destroy the earth. The result
is a disastrous social, economic and ecological crisis on a global scale.
The mechanistic paradigm has failed the reality test in life. What is not generally known is that it has also failed the reality test within western science itself. Contemporary western science across the disciplines is revealing how nature is organic, dynamic and interconnected. There are no linear causal chains linking genes and the characteristics of organisms, let alone the human condition. Yet, the discredited paradigm of genetic determinism is still being perpetrated by the scientific establishment, in exactly the same way that neo-liberal economics still dominates the political mainstream. Not only is the old paradigm good for promoting genetic engineering biotechnology, it also makes many of the unethical applications seem compelling.
Study after study continues to show that there are no simplistic explanations for diseases in terms of single genes. The doyens of human genetics are all saying that there is no such thing as a single gene disease, simply because the action of each gene is modified and affected by many other genes. For example, cystic fibrosis among Northern Europeans is strongly associated with a mutation in a certain gene, but the severity of symptoms varies over a wide range, depending on the background of other genes. Moreover, among the Yemans, the same mutation is associated with a different condition; while cystic fibrosis is associated with mutations in another gene altogether.
The connection between genes and disease becomes all the more tenuous
when it comes to conditions such as cancer, heart disease, diabetes, schizophrenia,
intelligence, alcohol abuse, homosexual and criminal behaviour, where environmental
and social factors increasingly predominate.
There are up to 100 000 genes in the genome, with hundreds of variants in each gene. Each person is genetically unique, except for identical twins at the beginning of development, before they can accumulate genetic mutations independently. It is impossible, in principle, to give the prognosis for any disease for an individual, let alone predict his or her lifestyle, based on the person’s genetic makeup.
The overwhelming causes of ill health are environmental and social. So-called single gene diseases account for less than 2% of all diseases, and as mentioned earlier, even for these, the severity of syndromes tend to vary very widely in most cases. For many conditions in which ‘predisposing genes’ are being identified, environmental influences cancel out even large genetic differences. For example, breast cancer is known to be relatively rare among women in non-industrial countries in Asia, while the incidence among European women in the industrial countries is five times as high. However, among Asian women who have emigrated to Northern Europe and the United States, the incidence of breast cancer jumps to that of the European women within a single generation.
The undue focus on genes is therefore entirely misplaced. It is
diverting attention and resources away from the real causes of ill health
and blaming the victims, thus contributing to the re-emergence of genetic
discrimination and eugenics that have blighted the history of much of the
The only concrete offers from the human genome project thus far are an increasing number of genetic tests. Some 740 such tests are already in the market. In cases where the use of such diagnostic tests can help treatment of patients, exorbitant licence fees have prevented their use. On the other hand, healthy people testing positive have been denied employment and health insurance. There are already moves to make it compulsory for individuals to reveal the results of genetic tests to insurance companies within the UK.
Prenatal diagnosis on the unborn, and pre-implantation diagnosis on human embryos have resulted in the elimination of foetuses and embryos with genes that are said to pre-dispose them to cancer as adults. James Watson, one of the scientists awarded the Nobel Prize for working out the double-helical structure of DNA, even suggested that parents might want to eliminate the unborn carrying homosexuality genes.
Meanwhile, a prominent band of scientists and ‘bioethicists’ are openly declaring that the creation of a gene-rich class of human beings is inevitable, as those who could afford to, will pay for genetic enhancement of their offspring. There will then be a genetic underclass - children of those who cannot afford to pay - that might become a separate, inferior species. Those projections, like the promise of individually customized medicine, are genetic determinist fantasies. But they are far from harmless, for they are giving rein to the worst eugenic tendencies in our societies.
Another trend is the erosion of privacy and civil rights. Governments are creating large DNA databases of suspects, if not the entire population of a nation, so as to better apprehend criminals. Governments including the UK, along with biotech companies, are also encouraging ordinary people to donate their DNA to create national databases that can help identify susceptibility to diseases.
The DNA database of an entire nation, Iceland, has been sold to a private company, and negotiations are taking place between another private company and the Swedish Government for the ‘ethical’ take over of the Swedish population database. International trafficking of human organs has been rife for the past decade. It can be predicted that cell lines, eggs and human embryos will be added to the list as human embryo experimentation is being approved in the UK, and human cloning is being promoted. A hospital in South African has already been contracted by a biotech company to supply frozen placentas of black people to be shipped to Paris.
These trends have persuaded the Council for Responsible Genetics, a non-government organization in the United States, to draft a Genetic Bill of Rights to protect "human rights and integrity" and the "biological integrity of the earth" (<www.gene-watch.org>). This should serve as the basis of both national and international legislation that is urgently needed.
There is also need for something like a World Ethics Council consisting of independent scientists and representatives of a cross-section of civil society, in order to deal with violations of human rights, privacy and dignity.
It is time to turn the tide on the brave new world of bad science and
big business in order to reclaim the good life for all in every sense physical