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Humam Genomics

Mae-Wan Ho
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Date of publication: March 2002

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ISIS News 6, September 2000, ISSN: 1474-1547 (print), ISSN: 1474-1814 (online)
Human Genome -The Biggest Sellout in Human History
Our Governments have handed over the human genome to private ownership.
The hype continues, but will it deliver? Not likely. Mae-Wan Ho concludes that, unless and until
there is a quantum leap to a new paradigm for understanding the organism as a coherent whole,
human genome research will remain a scientific and financial black hole that swallows up all
resources without any return to investors or to improving the health of nations.
“To-day, we are learning the language that allowed God to create life.” That was how Clinton
greeted the announcement of the human genome map on June 26. The Human Genome Project,
(HGP) an international public consortium of research laboratories led by the United States, and
Celera, a private American company, made the announcement jointly, ending months of
competition to complete the first sequence of the human genome. Craig Venter, Director of Celera,
marked this “historical day in the 100,000 years of human history” when, for the first time, “the
human species can read the letters of its own text.” Not to be outdone, Francis Collins, head of the
public project, called it “the revelation of the book of life”.
French Research Minister, Roger-Gérard Schwartzenberg, hailed the event as “ the
victory of those who wanted knowledge to remain free”. In reality, it is the biggest sellout in human
history dressed up with the most far-flung hyperboles.
The human genome has been sequenced with major public finance from the United States
and the European Community. The US Government alone had earmarked $3 billion for the
initiative. But that has not prevented the human genome from being patented, owned and
exploited by private companies.
Celera’s genetic maps would eventually be available on the Internet, and the company will
claim royalties from any commercial pharmaceutical application of its discoveries. In contrast, the
gene sequences and gene maps produced by the public consortium have been deposited regularly
within 24 hours of completion in GenBank, a public database set up in the early 1980s when DNA
sequencing began, access to which is totally free. Celera kept its own human genome data secret
while benefiting from free access to the public database throughout the period that the company
was busy sequencing, thereby significantly reducing the time and effort needed to complete the
task.
Celera is not the only company stealing from HGP’s Genbank. Others such as Incyte has
mined the public data to help build its catalogue of genes and patents. There are some 20 000
patents on gene sequences pending at the US patent office.
The US Patent and Trademark Office had tightened up the criteria for gene patents by
issuing two new directives under section 101 “utility”, and section 112 “written description
requirements” last December. Under the new utility guidelines, the USPTO is looking for “specific
utility” and “substantial utility”. So, DNA fragments or express sequence tags (EST) will require a
written description of their specific utility in order to be patented (though millions of patents based
on those have already been granted in the US). Similarly, according to the current EU Directive on
biotechnological inventions, genes and gene-sequences can still be patented if an “industrial
application” is specified.
However, an “industrial application” may amount to no more than speculation on function
based on similarity to gene sequences in the existing database. Another industrial application for
which many patents have been awarded is “association with condition X”, where X is anything from
cancer to criminality. There are already 740 patented gene tests on the market, among them are
BRCA1 and BRCA2, genes linked to breast cancer in women. Years after the tests were launched,
scientists still do not know to what degree those genes contribute to a woman's cancer risk.
But it is precisely ignorance that is fueling a goldrush in ‘bio-infomatics’ - a fusion of
information technology with biology - that promises to turn the raw genomic base-sequence data
into knowledge for making even more lucrative new drugs. It is already a $300 million industry
expected to grow to $2 billion within 5 years.
The public GenBank holds sequence data on more than seven billion units of DNA, while
Celera Genomics claims to have 50 terabytes of data in store, equivalent to 80 000 compact discs.
The raw sequence data consist of monotonous strings of four letters - A, T, C and G -that make
up the 3 billion or so bases in the human genome. It is impossible to access the data or to make
any sense of the sequences without special software. Some softwares are developed and made
freely available in the public domain, but the databases of private companies are provided to paid-
up subscribers only. Incyte launched an e-commerce genomics program in March that allows
researchers to order sequence data or physical copies of more than 100 000 genes on-line.
Subscribers to the company’s genomics database include drug giants such as Pfizer, Bayer and Eli

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Lilly. Celera's gene notes, similarly, will cost commercial subscribers an estimated $5 to $15
million, and academics, $2000 to $15000 a year.
Close on the heels of bioinformatics is ‘proteomics’, details on when and where genes are
active and on the properties of the proteins the genes encode. It attempts to make sense of the
complex relationships between gene and protein and between different proteins, and has so far
attracted hundreds of millions in venture capital.
Proteomics has spawned a number of technical innovations, among which is the Gene
Chip, developed by Affy-metrix in Santa Clara, California. It consists of glass microarrays coated
with cDNAs (complementary DNA) to identify which mRNA species are made (and hence which
genes are expressed). One microarray allows researchers to identify more than 60 000 different
human mRNAs. The US National Cancer Institute has been examining the mRNAs produced by
various types of cancer cells in a Human Tumor Gene Index project involving government and
academic laboratories as well as a group of drug companies including Bristol-Myers Squibb,
Genetech, Glaxo Wellcome and Merck. So far, more than 50 000 genes have been identified that
are active in one or more cancers.
The sequencing of the human genome is undeniably a technical feat comparable perhaps
to landing on the moon. And it is difficult not to be caught up in a frenzy of speculation on what can
be achieved as genomics joins forces with the latest in information and nanotechnology. But will it
deliver health, let alone happiness?
Two medical geneticist writing in the New England Journal of Medicine, warned that the
‘genetic mantle’ “ may prove to be like the emperor's new clothes.” As has been pointed out by
many scientists, most diseases are complex, and correlations between genes and disease are
therefore weak. Associations between a disease and a ‘genetic marker’ (of unknown function) can
occur by chance and some have proved to be spurious. Although many disease-related genes
have been mapped to regions of specific chromosomes, no clear markers for asthma,
hypertension, schizophrenia, bipolar disorder, and other disorders have been found despite
intensive efforts.
Searches for susceptibility genes in breast cancer, colon cancer, rare early-onset forms of
type II diabetes, and Alzheimer's disease have been more successful, but in each case these
account for less than 3 percent of all cases. That is because the risk of disease depends not only
on other genes but also on environmental factors.
Holzman and Marteau conclude, “In our rush to fit medicine with the genetic mantle, we are
losing sight of other possibilities for improving the public health. Differences in social structure,
lifestyle, and environment account for much larger proportions of disease…Those who make
medical and science policies in the next decade would do well to see beyond the hype.”
Let us take stock of some of what is on offer. The human genome sequence, we are told,
will enable geneticists to,
• cure cancer
• understand more about diseases and thereby to design better drugs
• design customized cures based on our individual genetic makeup
• prescribe an individual’s lifestyle based on genetic makeup.
More contentious are the claims to
• diagnose all the bad genes that cause diseases
• identify all the good genes responsible for desirable qualities such as longevity, intelligence,
being slim and beautiful, good at sports, and so on
• replace bad genes in ‘gene therapy’, including germline gene therapy
• create ‘genetic enhancement’ by introducing ‘good’ genes
• create ‘designer babies’ and superior human beings.
In reality, the only concrete offering from mapping the human genome are the hundreds of
patented gene tests. The high costs of the tests have prevented them from being used in cases
where it might benefit patients in providing diagnosis. At the same time, those healthy subjects who
have tested positive are likely to suffer from genetic discrimination and risk losing employment and
health insurance. The value of diagnosis for conditions for which there is no cure is highly
questionable. The claim to identify putative ‘bad’ and ‘good’ genes is also fueling the return of
eugenics, which has blighted the history of much of the 20th century. This is exacerbated by the
dominant genetic determinist mindset that makes even the most pernicious applications of gene
technology seem compelling.
A prominent band of scientists and ‘bioethicists’ are actively advocating human genetic
engineering, not just in ‘gene therapy’ for genetic disease, but in positively enhancing and
improving the genetic makeup of children of parents who can pay for the privilege, and have no

4
qualms regarding human reproductive cloning either. They have been given much attention in the
mainstream media.
The promises as well as the threats remain largely in the realm of future potential if not
outright fantasy. We were promised no less than “the blueprint for making a human being” by no
less than Nobel laureate James Watson when the Human Genome Project was first touted, along
with miracle cures for cancer and other diseases, and even immortality. Now, ten years and dozens
of sequenced genomes later, it is all too obvious that geneticists haven’t got a clue of how to make
even the smallest bacterium, or the simplest worm, let alone a human being. Nor has anyone been
cured of a single disease on the basis of genes or genetic information.
Rather than address the contentious claims of the human genome project, let’s
concentrate on those offerings generally seen to be beneficial and uncontroversial; for if it cannot
deliver on those, it can certainly not deliver on the rest.
The growth in ‘bio-informatics’ and ‘proteomics’ is an admission of the vast realms of
ignorance that separate the 100 000 genes in the human genome from the living human being. It
is also an acknowledgement that the genetic determinist paradigm which has done so much to
promote the human genome project has failed miserably. There is no simple, linear causal chain
connecting a gene to a trait, good or bad. Behind the hype is a desperate attempt to turn the
exponentially increasing amount of information into knowledge that can pay off the heavy
investments already sunk into the project.
Private ownership of the human genome is obviously not ever going to benefit those who
cannot afford to pay. Proponents of human genetic engineering, indeed, see the creation of a
‘genetic underclass’ to be inevitable, as those who can afford to pay for genetic enhancement will
become ‘gene rich’ relative to those who cannot afford to pay . But can knowledge of the human
genome really deliver the goods?
Genuine genetic diseases that can be attributed to single genes constitute less than 2% of
all diseases, and more and more geneticists are coming around to the view that even those are
subject to so many other genetic and environmental influences that there is simply no such thing as
a single-gene condition. For the rest, the association between the condition and the specific genes
or genetic markers reduces to tenuous ‘predispositions’ or ‘susceptibility’ (see above).
‘Predipositions’ to cancer for example, conceals the fact that important environmental
factors are left out of consideration. These include the hundreds of acknowledged industrial
carcinogens polluting our environment. It is well-known that the incidence of cancer increases with
industrialization and with the use of pesticides. Women in non-industrialized Asian countries have a
much lower incidence of breast cancer than women living in the industrialized west. However,
when those Asian women emigrate to Europe and the United States, their incidence of cancer
jumps to that of the white European women within a single generation. Similarly, when DDT and
other pesticides were phased out in Israel, breast cancer mortality in pre-menopausal women
dropped by 30%. The overwhelming causes of ill-health are environmental and social. That is the
conclusion of a major body of research findings, still growing everyday. Environmental influences
swamp even large genetic differences.
The genetic determinist approach of the human genome programme is pernicious because
it diverts attention and resources away from addressing the real causes of ill-health, while at the
same time stigmatizing the victims and fueling eugenic tendencies in society. The health of nations
will be infinitely better served by devoting resources to preventing environmental pollution and to
phasing out agrochemicals, rather than by identifying all the genes that ‘predispose’ people to ill-
health. Even the UK Royal Society, not known for holding progressive views, has produced a report
in July calling for national and international coordination to deal with the dangers posed to humans
and wildlife by endocrine-disrupting chemicals, substances thought to mimic or block natural
hormones in amounts too minute to trigger a conventional toxic response.
But it is the inherent complexity of the human organism and the lack of a concept of the
organism as a coherent whole that will continue to frustrate all attempts at understanding health
and disease within the dominant, reductionist framework.
Despite the almost weekly hype on cancer cures, there is none, or none that has resulted
from information on genes and gene sequences. As mentioned earlier, some 50 000 genes have
been identified that are active in one or more cancers using the Gene Chip, which is half of the
maximum number of gene predicted in the human genome!
In principle, knowing the genes that are over-expressed or inactive in individual cancers
can allow specific genes to be targeted. But this is no different from interventions that have
previously been available to single-gene defects such as sickle cell anaemia or cystic fibrosis, none

5
of which has been cured as a result; which is why gene therapy has been attempted, equally to no
avail so far.
To try to understand disease in terms of genes and protein interactions is worse than trying
to understand how a machine works in terms of its nuts and bolts, simply because the parts of the
organism, unlike those of a machine, are inseparably tangled up with one another. That is how they
have to function. This kind of understanding is extremely unlikely to lead to the design of better
drugs, which requires knowledge of the design of the human organism. And no amount of
information on genes and protein interactions will ever add up to the complex entangled whole that
is the organism.
The promise of customized medicine and prescribed lifestyle based on an individual’s
genetic makeup is a pipe-dream. The effect of each gene depends not just on environmental
factors, but ultimately on the genetic back-ground of all other genes in the genome. It is estimated
that individuals differ on average by one per thousand bases. This amounts to three million bases
over the entire genome. As each gene is at least a thousand bases in length, it means that every
gene will most probably be different. In fact, hundreds of variants are typically found for each gene.
Consequently, every individual is genetically unique, except for identical twins at the beginning of
development, before different genetic mutations can accumulate in each of the pair. That is why it
is generally impossible to give accurate prognosis of even single gene diseases unless the genetic
background is homogenous, as in an inbred laboratory strain of mice. And even then, the mice
have to be raised in a uniform environment.
The Icelandic population is thought to approach a genetically homogenous population,
which is why the company deCode Genetics has acquired the genetic database of Iceland’s 270
000 inhabitants, linked, anonymously to medical records. The hope is to enable all the genes linked
to a variety of diseases to be identified. Unfortunately, the results will be valid for the Icelandic
population only, and will not be transferable to other populations. Thus, mutations in the gene
giving rise to cystic fibrosis among Northern Europeans is associated with quite another condition
among the Yemans; while bona fide cystic fibrosis in the latter population is due to mutations in
another gene altogether.
There is a current debate as to whether genetically heterogeneous populations, such as
those in Manhattan and London, or homogeneous populations, such as those in Iceland and
Finland, could yield better genetic data for linkage to diseases. According to biometrical genetic
analysis, the net effects of a gene should be determined over all environments as well as over all
genetic backgrounds, so we are back to the limited predictive power based on averages obtained
in large populations. It is impossible, in principle, to predict anything based on any individual
genome. Those who claim otherwise are doing so in ignorance of the most basic principles of
population genetics.
In case you still think that the blueprint for making a human being is written in our genome,
just take note that up to 95% of the human genome may be ‘junk’ DNA, so called because no one
knows what its function is. The same is true of all genomes of higher organisms. The rough draft of
the human gene map announced in June is only 85% complete for the coding (functional) regions
only.
It is difficult to see any strategy within either bioinformatics or proteomics that can pay off,
either in terms of basic understanding the human organism as a whole, or in terms of miracle cures
and wonder drugs. There is nothing beyond the proliferation of more and more detailed information
on genes and proteins that have been spilling out of the pages of scientific journals for the past
decade. The one million proteins encoded by the 100 000 genes interact with one another, with the
genes themselves, and small molecular weight ‘cofactors’ and ‘messengers’. Those interactions
vary in different cells and tissues at different times, subject to feedback from the environment.
Feedback from the environment can alter the genes themselves, and hence the cascades of
interactions involved. All that is the reality of the fluid and adaptable genome which the moguls of
genomics and bioinformatics have yet to come to grips with. The prospect of understanding the
human being by a detailed description of its molecular parts is essentially nil. This reductionist
fallacy has been exposed in different forms, starting with the physicist Walter Elsasser.
Even if a computer is large enough to represent the states of all the molecules and their
interactions, and fast enough to give a description of how these change in real time as the
organism goes about its business of living, we would still be left with no understanding of what is
being described. Current computation cannot handle the dynamics of one single protein folding,
even given all the information on the amino-acid sequence and the final shape of the folded
protein. It takes the computer four hours to find a solution at best 70% accurate. But the protein
itself folds to perfection within a fraction of a second.

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 Unless and until there is a quantum leap to a new paradigm for understanding the
organism as a coherent whole, 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. (See the full version of this paper on <www.i-sis.org>)

(This article was published in Third World Resurgence 127/128, March/April, 2001, and also in
ISIS News 7/8, February 2001)
Human Genome Map Spells the Death of Genetic Determinism
Mae-Wan Ho
The complete human genome map was announced just before Valentine’s day [1]. But it was an
anticlimax for the proponents, despite much effort to keep up the hype. The scientists declared
themselves ‘surprised’. The “book of life” turns out to have as few as 30 000 genes. Craig Venter,
whose company Celera raced the publicly funded sequencing consortium to the finishing line, was
the only one to read the implications correctly. The number of genes is far less than needed to
support the extravagant claims throughout the past decade that individual genes not only
determine how our bodies are constructed, what diseases we suffer from, but also our patterns of
behaviour, our intellectual ability, sexual preference and criminality.

Facts of Life [2]

• The human genome has about 30 000 genes, twice as many as a fruitfly and 10 000 more than
the simple roundworm.
• There are only 300 unique genes in the human (genome), which are not in the mouse.
• Forty percent of the genes are previously unknown.
• 113 genes have been transferred into the human genome from bacteria.
• There is no genetic basis for race, humans all over the world share 99.9% of their DNA.
• The ‘complete’ sequence is still riddled with gaps.
• The fugu fish has the most concise genome, it has no ‘junk’ DNA.
• More than 95% of the human genome is ‘junk’ DNA
• The coding regions for proteins occupy only 1.1% of the human genome.
• About 50% of the human genome are proviral sequences and transposable elements, many
with reverse transcriptase.
• One of the most common transposable element, Alu, tends to cluster where there are genes.
• Chromosomes vary widely in the number of genes they contain.
• Most mutations occur in males.
• There are 250 000 proteins made by the 30 000 genes.
• The dog is 85% identical to a human in terms of genetic sequence and many of the 380
inherited diseases in dogs are similar to those in humans.
• There are more than four million genetic differences between humans found so far.
• 1 778 genes have been identified with diseases so far, from asthma to Alzheimer’s
“We simply do not have enough genes for this idea of biological determinism to be right,”
said Venter, The wonderful diversity of the human species is not hard-wired in our genetic code.
Our environments are critical.” Many of us have been saying the same decades before the idea for
the human genome project had ever been conceived of.
John Sulston, Head of the Sanger Centre in Cambridge in the public consortium, attempts
to save face by appealing to ‘executive’ genes that do very sophisticated ‘management’ work.
“What we are doing is to increase the variety and subtlety of genes that control other genes.” [2]
But that only leads us into the infinite regress of having to postulate genes that control genes that
control yet other genes. What Sulston should have added, at the end of his sentence, is the phrase
“that respond to the environment”. Genetic determinism is dead, and has been dead at least for
close to twenty years [3].
Worse yet, “Mapping the genome could be route to disaster”, headlines another paper [4].
Excitement in the drug industry could be short-lived, according to a report compiled by investment
companies Lehman Brothers and McKinsey. The human genome project could be too big for the
biotech and pharmaceutical companies to handle, and could bankrupt the industry. The
“information overload” will cost much more than previously thought. The report draws on interviews
with experts throughout the industry, and concludes, “Perhaps the most surprising and compelling
discovery is that, in fact, genomics threatens to increase not only the associated research and
development costs, but also the average cost per new drug.”

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 I have referred to human genomics as “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”[5]. Now that the bubble has burst, it is time to take stock and seriously rethink
healthcare.
The project to sequence the entire human genome has cost the public $3billion in the US
and hundreds of millions of pounds in the UK. Now, scientists are telling us this is just the end of
the beginning, and much more money is needed before the goods can be delivered in terms of
miracle cancer cures, eradication of disease, genetic enhancement, gene therapy, personalised
medicine and a prescription of lifestyle based on our genetic makeup. Indeed, the UK Government
is investing at least £2.5 billion over the next five years to ‘human genomics’ in a misguided attempt
to identify all the genes that predispose the UK population to disease [6]. That, at a time when our
National Health is in financial crisis and research and development of other aspects of healthcare
has been sorely neglected.
But even if the goods can be delivered against all odds, they will be beyond the means of
the average taxpayer because private companies are aggressively staking out their claims on our
genome. The pace of gene patenting has accelerated to a frenzy. Applications for patents in the
US have gone from an annual 150 000 in the late 1980s to 275 000 today. In October last year,
there were patent applications on 126 672 human gene sequences. By Feb. 2001, there are 175
624, a 38% jump [7]. The US has granted patents for millions of SNPs (single nucleotide
polymorphisms) and gene fragments for which functions are unknown before it tightened the patent
laws in December 1999. The human genome is already covered with dozens of times more patents
than there are genes, because multiple patents are being granted over the same stretch of DNA.
Such patents are seriously distorting healthcare and stifling scientific research and innovation [8].
Among the human genes and cell lines patented and sold by corporations are those stolen
from indigenous peoples under the pretext of providing medical care, and even coercion is used.
DNA databases of entire populations such as those of Iceland and Tonga have been sold to private
companies. The Swedish Government is in negotiation with another company for the ‘ethical’
takeover of its population database, and the UK Government is planning to establish one of its
own.
Some 740 patented gene tests are already in the market, and hundreds more in the
pipelines. For cases where such tests can help to diagnose and treat patients, exorbitant licence
fees have prevented them from being used. On the other hand, healthy people testing positive are
denied employment and health insurance. Insurance companies in the UK can now require
individuals to reveal the results of genetic tests. At the same time, prenatal and pre-implantation
diagnoses are eliminating human foetuses and embryos carrying genes said to pre-dispose them
to cancer as adults.
Governments are diverting large amounts of tax money into human genomics research
which benefit the corporations. This is the real disaster for public health. For it has narrowed the
options for healthcare and foreclosed other promising approaches. It is also a major distraction
from the real causes of ill-health, which are overwhelmingly environmental and social, which will
end up marginalizing and victimising those most in need of care and treatment.
Long before we were told there aren’t enough genes to support the genetic determinist
view, many scientists have concluded that there are no simplistic explanations for diseases in
terms of single genes, because the action of each gene is modified and affected by many other
genes. 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
and criminal behaviour, where environmental and social factors increasingly predominate.
There are hundreds of variants in each of the 30 000 genes in the genome. Craig Venter’s
Celera has identified over 4 million single nucleotide polymorphisms, or SNPs – variants of genes
that differ by a single base. 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 [5].
More than a decade of somatic ‘gene therapy’ has met with no success. On the contrary,
there have been deaths and numerous adverse events, the causes of which remain largely
unknown. Many hazards are already evident from existing scientific findings. These include
immune reactions to GM constructs and creation of new viruses due to recombination between
artificial gene therapy vectors and dormant viruses in the genome.
Nevertheless, arch genetic determinists and other prominent scientists as well as
‘bioethicists’ are advocating human germline gene therapy and human cloning. They see the

8
creation of a gene-rich class of human beings to be inevitable due to the free reign of the global
marketplace. The rich will pay to genetically enhance their offspring, in the same way that they will
pay for expensive private education. Consequently, there will be a genetic underclass - children of
the poor - that will eventually become a separate, inferior species. Social inequity can thereby be
translated into genetic inequity and vice versa. Fortunately, this genetic determinist fantasy will
never come to pass. Unfortunately, it is fuelling the resurgence of eugenics and genetic
discrimination, giving rein to the worst prejudices of our society.
The cloning of Dolly the sheep first raised the possibility that the same procedure could be
used to create a human being. This met with universal opposition from citizens and governments
all over the world. However, human cloning came back on the agenda as companies and their
scientists pushed for approval of ‘therapeutic’ human cloning, the creation of human embryos for
the purpose of providing cells and tissues for transplant. In January 2001, the UK became the first
Government in the world to pass a law that makes this legal, even though the available scientific
evidence indicates that such human cloning is totally unnecessary and immoral [9]. ‘Human’ clones
have even been created, by transferring the genetic material of a human cell into the egg of the
cow and the pig. Apart from the moral objections, such interspecific hybrids are well-known to
result in gross abnormalities. Against this background, the international trafficking of human organs
is already rife, and eggs and embryos will be added to the list. At least fifty women are needed to
provide enough ‘empty’ eggs to clone a single human embryo. Advertisements for egg donors have
appeared on the internet.
Another development is xenotransplantation, the creation of ‘humanised’ pigs by genetic
engineering to supply spare organs and cells for transplant into human beings. This is so clearly a
case of bad science and big business putting the world at risk from pandemics of viruses that cross
from pig to human beings that it should be banned immediately [10].
All the developments in and around human genomics stem from the mechanistic paradigm
that still dominates western science and the global society at large. 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 today, in pursuit of corporate profit.
The irony is that contemporary western science across the disciplines is rediscovering 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. The discredited paradigm is
perpetrated by a scientific establishment consciously or unconsciously serving the corporate
agenda, and making even the most unethical applications seem compelling.
It is high time scientists across the world free themselves from the corporate agenda, to
work in partnership with the organic uprising from the grassroots, to recover and revitalize the
holistic perspectives of traditional knowledge systems, to secure food and health for all.
1. Cited in “Men and women behaving badly? Don’t blame DNA” Robin McKie, Observer, Feb. 11,
2001. See also “Gene code opens new fields of medicine” Tim Radford, The Guardian Feb.
12, 2001.
2. See “Genome project” The Guardian Feb. 12, 2001; “Unexpected bits and pieces” Henry Gee,
The Guardian Feb. 12, 2001; “Genome discovery shocks scientists: Genetic blueprint contains
far fewer genes than thought – DNA’s importance downplayed” Tom Abate, San Francisco
Chronicle, Feb. 11, 2001; “Analysis of human genome discovers far fewer genes” Nicholas
Wade, The New York Times, Feb. 12, 2001.
3. “Mapping the genome could be route to disaster” Leo Lewis, The Independent on Sunday,
Business, 11 Feb., 2001.
4. Ho, M.W. (1998, 1999). Genetic Engineering Dream or Nightmare? Turning the Tide on the
Brave New World of Bad Science and Big Business, Gateway, Gill & Macmillan, Dublin.
5. Ho, M.W. (2000). The human genome sellout. Third World Resurgence #123-124, 4-9; also
ISIS News#6, September 2000 www.i-sis.org
6. “UK Government to establish population DNA database” ISIS Press Release 22 Jan. 2000
www.i-sis.org
7. “The profits that kill” Madeleine Bunting, The Guardian, Feb. 12, 2001.
8. Regalado, A. (2000). The great gene grab. Technology Review September/October, 49-55.
9. Ho, M.W. and Cummins, J. (2001). The unnecessary evil of ‘therapeutic’ human cloning. ISIS
Report Jan. 2001; ISIS News#7 www.i-sis.org
10. Ho, M.W. and Cummins, J. (2000). Xenotransplantation – How Bad Science and Big Business
Put the World at Risk from Viral Pandemics, ISIS Sustainable Science Report #3 August 2000
www.i-sis.org

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UK to Establish Population DNA Database
The UK Government is investing more than £2.5 billion in human genomics research, part of which
is to establish a UK population database to examine links between genes and health and disease.
Mae-Wan Ho raises concerns over invasion of privacy and genetic discrimination. She points to
increasing collusion of government and biotech corporations to divert vast sums of public money
into mega-projects that benefit industry rather than society.
The UK Government’s Medical Research Council (MRC) is to commit at least £1.9bn to ‘health
genomics’ research over the next five years – in addition to the £675m already earmarked for
constructing tech facilities to study genes and proteins [1]. This will coincide with the establishment
of a UK Population Biomedical Collection by the Wellcome Trust, a charity, in collaboration with the
Departments of Health. The MRC’s contribution to that project will be approximately £20m.
Sir George Rada, speaking for the MRC, said: “The recent publication of the first draft of
the human genetic code is just the first step in understanding more about the human body.
Scientists are now looking for possible links between particular genes and health and diseases.
Working out the functions of these genes is key to designing new approaches to detecting illness
early and to preventing and treating diseases. The Collection promises to be one of the most
exciting scientific initiatives of recent times. It could deliver benefits for the health of many
generations to come.”
The study will, in the first instance, involve half a million volunteers donating blood samples
from which their DNA would be extracted. The same volunteers will provide lifestyle information to
the researchers. Over a period of years, this information would be tracked against their medical
records. A small number of regional centres across the UK will be set up to recruit volunteers, with
the overall study centrally managed and co-ordinated.
Such studies have already raised concerns over the invasion of privacy and the erosion of
civil rights. The genetic data will also result in individuals being discriminated against in
employment and health insurance [2]. The database can fall into the hands of a private company
and further sold to subscribers (see “Human Genome Map Spells Death of Genetic Determinism”,
this issue). This collusion between governments and the biotech industry is an extremely worrying
trend.
The MRC is giving assurance that “The information and samples collected will be held in
public ownership for public benefit and there will not be exclusive access to it by any one
organisation or commercial company.” But there is no guarantee that the policy of successive
governments, or of the same government, will remain unchanged.
The health of nations will be infinitely better served by devoting resources to disease
prevention, to phasing out the hundreds of known carcinogens among industrial and agricultural
chemicals, rather than by identifying the genes that ‘predispose’ people to ill-health.
“MRC SCIENCE BUDGET ALLOCATION ENABLES FURTHER DEVELOPMENT OF HEALTH
GENOMICS RESEARCH” MRC Press Release MRC/69/000, 22 November www.mrc.ac.uk

How Bad Science and Big Business are Killing Us

Talk given to “Genetics, Beyond Determinism: New Perspectives in the Research on Living
Organisms”. ‘Global Culture, World Politics’, Biennale Europea Riviste Culturali, 10th July 2001,
Genoa, Italy
Mae-Wan Ho
There is a science war going on in the real world, and everyone ought to be engaged in it,
because, if you don’t, bad science and big business are going to kill us all [1].
Our governments have sold all their citizens into corporate serfdom, including the scientists
[2]. Corporations have taken over our universities, and the scientific establishment is doing its best
to push the corporate agenda. Honest scientists are victimised and vilified for trying to tell the truth,
or to protect academic standards. Our tax money is being largely squandered in funding
degenerate research in the academia, in supporting failed and failing corporate technologies,
including some the most hazardous, such as nuclear energy and genetic engineering. Meanwhile
the scientific establishment and our government regulators are still turning a blind eye to the
abundant evidence of hazards that already exist.
Many of the most pressing environmental, health and social problems are not being
addressed. On the contrary, we are being committed to more of the same, blocking the
comprehensive paradigm change that we need to get us out of the mess. You can read all about
the science war in ISIS News [3], the official publication of the Institute of Science in Society
which I have co-founded in 1999 to work for science, society and sustainability.

10
 Today, I want to concentrate on one example of the degenerate research that we must
reject, so-called ‘human health genomics’.
The human genome may go down in history as the biggest white elephant for humanity. It
cost a lot and is useless, it does not work, and is so expensive to maintain and grows so big so fast
that it will bankrupt the industry as well as entire nations [4]. The only clear message in the ‘book of
life’ is “there is no one home, life is not to be found here”. Craig Venter, whose company Celera
raced the publicly funded sequencing consortium to the finishing line, said as much, “We simply do
not have enough genes for this idea of biological determinism to be right. The wonderful diversity of
the human species is not hard-wired in our genetic code. Our environments are critical.” [2].
I was researcher and lecturer in genetics throughout the mid-1970s to the early1980s when
new discoveries on the fluid genome made headlines every week, overturning the most deeply held
convictions of classical genetics. Craig Venter may have just discovered that genetic determinism
cannot deliver the goods, after sequencing the human genome. But many of us knew that genetic
determinism had died with the revelations of the fluid genome, if not before [3].
The scientific establishment has remained firmly wedded to genetic determinism, if only
because it is indispensable for business. It is also fuelling the resurgence of eugenics and genetic
discrimination, and making even the most unethical uses seem compelling, such as the creation of
human embryos to supply cells and tissues for transplant in so-called ‘therapeutic’ human cloning
[4].
I started my career in human biochemical genetics, studying genuine genetic diseases that
could be attributed to mutations in single genes. These account for no more than 2% of all human
ailments. But diagnosing and curing rare single gene defects simply “did not fit the business
model”. So, ‘genetic defects’ and ‘gene therapy’ expanded in recent years to include the far more
common and potentially highly profitable diseases such as cancer, heart disease, AIDS,
Alzheimer’s and Parkinson’s. Francis Collins, head of the public human genome consortium, runs a
laboratory in the US National Institutes of Health. He is now engaged in a “huge and very
complicated” search for genes for adult-onset diabetes [5]. Adult-onset diabetes, like asthma and
cancer has reached epidemic proportions over the years, increasing from 4.9% in 1990 to 6.5% in
1998, in both sexes, across all ages, ethnic groups, education levels, and in nearly all states in the
United States [6]. That should have alerted all rational scientists to look for environmental causes
instead of genes.
James Watson and other proponents of the human genome project perpetrated the
ultimate genetic determinist myth that the human genome sequence contains the ‘blueprint for
making a human being’. The public has paid out billions of dollars in the United States and
hundreds of millions of pounds in the United Kingdom. Now, dozens of genome sequences later,
the sequencers haven’t a clue of how to make the smallest bacterium or the simplest worm, let
alone a human being. The human genome may consist of up to 98.9% ‘junk DNA’ with no known
function. Geneticists are baffled. “The genome isn’t a code, and we can’t read it.”[7]
Public investment was needed to keep the human genome in the public domain, we were
told. But that had not prevented any human gene from being patented. On the contrary, scientists
funded by the public have been busy patenting genes and starting up private companies, with little
or no return to the public coffers [8]. Genes and cell lines stolen from indigenous peoples are
patented, and governments are selling DNA databases of entire nations to private companies.
These patents and proprietary databases not only violate basic human rights and dignity, they are
seriously distorting healthcare and stifling scientific research and innovation [9]. They should be
firmly rejected by the scientific community.
Now, the elephant attendants are saying the human genome needs more money before it
can deliver the goods. The UK Government is obligingly giving away £2.5 billion over the next four
years to ‘health genomics’, to identify all the genes that predispose the UK population to disease
[10]. The elephant is growing big fast.
Such massive divestments of public funds are designed to bail out the biotech industry
already in trouble over GM crops, and now showing every sign of being driven bankrupt by the
human genome [11]. But the real disaster will fall on public health. It is narrowing the options for
healthcare and foreclosing other promising approaches. Health genomics is a major diversion and
obstruction, and is preventing us from addressing the overwhelming environmental and social
causes of ill-health. It will also victimise those most in need of care and treatment. I call it “a
scientific and financial black hole” [12], a colossal waste of scientific imagination and financial
resources.
In many respects, health genomics epitomises the failures of reductionist medicine, which
have reached crisis proportions. Drug and antibiotic resistant infectious diseases have come back

11
with a vengeance within the past 25 years. Infectious diseases are responsible for one-quarter of
the 53.9 million deaths in the world, second to cardiovascular disease [13]. For poor countries and
children under five, however, infectious diseases top the list, accounting respectively for 45% and
63% of deaths. Among the factors blamed are the overuse and abuse of antibiotics, destruction of
the environment, poverty, malnutrition and increase in air travel, all of which serves to remind us
that disease cannot be understood in reductionist terms. One likely contributing factor that has yet
to be named by the scientific establishment is the rise of commercial genetic engineering within the
same period [14]. Genetic engineering, in agriculture as in medicine, uses the same tools and
makes the same kinds of artificial constructs, all of which enhance horizontal gene transfer and
recombination, precisely the processes that create new pathogens and spread drug and antibiotic
resistance genes.
The other big killers are cardiovascular disease, which tops the list at 31%, and cancer at
13%, after infectious diseases. Both cardiovascular disease and cancer are predominantly
illnesses of rich industrialised nations. Cancers are linked to ionising radiation [15] and to the
hundreds of actual and potential carcinogens among the industrial and agricultural chemicals
polluting our air, water and soil [16].
The incidence of cancer is known to increase with industrialisation and pesticide use.
Women in non-industrial Asian countries have a much lower incidence of breast cancer compared
to women living in the industrialised west. However, when Asian women emigrate to Europe and
the United States, their incidence of cancer jumps to that of the white European women within a
single generation. Similarly, when DDT and other pesticides were phased out in Israel, breast
cancer mortality in pre-menopausal women dropped by 30%. Environmental influences clearly
swamp out even large genetic differences [17].
Health genomics research will do nothing to identify or remove the causes of cancer.
Instead, it will identify all the genes that ‘predispose’ the victims to cancers, to enable corporations
that have made lots of money polluting the environment with carcinogens to make lots more money
selling diagnostic tests and ‘miracle cures’. Patients are bankable assets, and terminal cancer
patients all the more so.
The disease statistics are bad enough. But the cures may be far worse. Successive studies
have documented a rising epidemic of iatrogenic diseases, ie, diseases caused by medical
treatments, interventions and drugs. Doctors are now the third leading cause of death in the US
[18], responsible for some 250 000 every year, among which are 106 000 due to non-error negative
effects of drugs. The problem is not confined to the US, it is endemic in all industrialised countries
that adhere to the same reductionist model of health and disease: Canada, Australia, New Zealand
and Britain. We can already see the tip of the iceberg in the new classes of iatrogenic diseases that
‘health genomics’ will bring. Clinical trials of ‘gene therapy’ have killed six and caused more than
650 adverse events [19]. The ‘miracle cure’ for Parkinson’s turned into an irredeemable nightmare
because the cells from foetuses transplanted into five patients’ brains grew uncontrollably [20]. And
watch out for viral pandemics if xenotransplantation is to go ahead [21].
A sweeping paradigm change is long overdue. The human genome, like the genome of
any other organism, is fluid and dynamic. Genes function organically, in entangled networks that
respond from moment to moment to the changing context of the whole organism in its ecosystem.
They are not mechanical elements operating in fixed circuit boards. Let me give a few recent
examples of how genes, genomes and organisms respond organically to their environment,
demanding a radical rethink of the conventional approach.
Many bacteria are now found to change reversibly from a benign, non-proliferative phase
to a pathogenic, proliferative phase, depending on ecological conditions [22]. Some scientists are
now rethinking the failed conventional model of killing pathogens with new, ever more deadly
antibiotics as bacteria become resistant to the old ones [23]. They are designing drugs that
physiologically tame the bacteria, rather than kill them. A logical extension of that approach is to
find how ecological balance could be achieved, so bacteria do not become virulent.
The dominant reductionist model of cancer says cancer is caused by mutations in specific
cancer genes and cancer-suppressing genes. There is growing evidence that those gene
mutations are neither necessary nor sufficient for cancer to develop. Every cancer has a different
genetic signature. In fact, every cancerous growth in an individual differs in genetic signature. The
cancerous state is a physiological response of the cell to its environment, which is ultimately the
whole organism in its ecological context. Cancer is associated with gross genetic instability that
gives rise to large genomic abnormalities [24]. Cancer cures based on single molecular
interventions offered by health genomics will therefore be largely irrelevant and ineffective. The
emphasis must be prevention rather than cure. The phenomenon of spontaneous cancer remission

12
should also be much more thoroughly investigated. Remissions can occur after various
experiences that affect the whole body, such as fever, a change of diet or change of life-style.
There have been a large number of observations suggesting that genes in bacteria and other
organisms can mutate in response to environmental challenges, so as to enable them to survive [25].
There is evidence that defective genes in human beings can also regain function by mutation. Cells in
the body of individuals born with defective genes have been found to revert spontaneously to
functional states [26]. Thus, rather than persist in futile and dangerous attempts at ‘gene therapy’,
substantial effort ought to be redirected towards elucidating the physiological and environmental
conditions that can encourage the body to mend its own defective genes [27].
We have had decades, if not centuries, of reductionist, mechanistic science that has given us a surfeit of
knowledge of the parts, not all of which has been put to good, sustainable use. Now is the time to complement
this knowledge of the parts with investigations aimed at knowledge of the organic whole [28] that can truly
bring health and well being to the community. In particular, I propose that we target at least part of our research
budget to the following areas which are currently either grossly under-funded, or not funded at all.

1. Ecology and Energy Use in Sustainable Systems

To investigate the precise role of complexity and biodiversity
To elucidate energy-relationships, energy use, renewable energies
To identify biophysical indicators of ecosystem health
To develop non-invasive, non-destructive technologies for monitoring and regulating
environmental quality
2. Science of the Organism and Holistic Health
To articulate a concept of an organic whole as the basis of health
To identify biophysical and dynamical indicators of health
To develop non-invasive, non-destructive technologies for monitoring health and for quality
control of food and other agricultural produce
To develop effective therapeutic methods based on minimum intervention.
3. Working Science Partnerships
To enable scientists to work directly with local communities
To revitalise and protect traditional agricultural and healthcare systems from biopiracy and
globalisation
To develop appropriate sciences and technologies
4. Science and Technology Monitor
To monitor new developments for social/ecological accountability and safety
To promote critical public understanding
To promote science-public dialogue and public participation
Acknowledgment
This report was researched by Sam Burcher, Julian Haffegee, Nick Papadimitriou and Angela
Ryan.
References
1. See Ho, M.W. (1998, 1999). Genetic Engineering Dream or Nightmare? Turning the Tide on
the Brave New World of Bad Science and Big Business, Gateway, Gill and Macmillan, Dublin,
Continuum Books, New York.
2. See Monbiot, G. (2000). Captive State, Macmillan, London.
3. See in particular, ISIS News 9/10, July 2001, ISSN: 1474-1547 (print) ISSN: 1474-1814
(online) www.i-sis.org
4. See Ho, M.W. (2001). The human genome map, the death of genetic determinism and beyond.
Third World Resurgence 127-128, 14-18.
5. Cited in “Men and women behaving badly? Don’t blame DNA” Robin McKie, Observer, Feb. 11,
2001. See also “Gene code opens new fields of medicine” Tim Radford, The Guardian Feb.
12, 2001.
6. See "The unnecessary evil of 'therapeutic' human cloning" Mae-Wan Ho and Joe Cummins.
ISIS News 7/8 Feb. 2001 www.i-sis.org Also, Third World Resurgence 127-128, 43-45
7. See an excellent essay, “A Map to Nowhere, The genome isn't a code and we can't read
it”, by Tom Bethell, The American Spectator, April 2001.
8. Mokdad, A.H., et al. (2000). Diabetes trends in the US: 1990-1998. Diabetes Care 23,
1278-83.
9. The following description given by Tom Bethell (ref. 5) is the best that I have come across
anywhere for describing the flexibility and fluidity of gene function, “Imagine that an intelligence
service were to discover some unintelligible messages being sent by a spy. At first the

13
 intelligence agents naturally assume they are looking at a code. They assume the task of
decoding will be straightforward. But on closer analysis it turns out that the message means
one thing if the signal has been received and acted upon, another thing if it has been received
and not acted upon, another thing if the receiving apparatus is not switched on, and so on.
Rather than just a code the message is a bit like a set of rules for a rather complex interactive
game. There are feedback loops, and circuits within circuits, and a lot of things happening
inside the cell but outside the genome….”
10. “Investing in healthcare or the health market?” by Nick Papadimitriou, ISIS Report April 18,
2001 www.i-sis.org
11. Regalado, A. (2000). The great gene grab. Technology Review September/October, 49-
55.
12. “UK to establish population DNA database” ISIS News 7/8 , Feb. 2001, ISSN: 1474-1547 (print)
ISSN: 1474-1814 (online) www.i-sis.org
13. “Mapping the genome could be route to disaster” Leo Lewis, The Independent on Sunday,
Business, 11 Feb., 2001; see also Bethel (ref. 5).
14. Ho, M.W. (2000). The human genome sellout. Third World Resourgence 123-124, 4-9; also
ISIS News 6, September 2000 ISSN: 1474-1547 (print) ISSN: 1474-1814 (online) www.i-sis.org
15. World Health Organisation figures for 1998, WHO website www.who.int
16. Ho MW, Traavik T, Olsvik R, Tappeser B, Howard V, von Weizsacker C and McGavin G.
Gene Technology and Gene Ecology of Infectious Diseases. Microbial Ecology in Health
and Disease 1998: 10: 33-59.
17. Montague, P. (2000). The major cause of cancer parts 1-3, Rachel’s Environmental Weekly
http://www.rachel.org.
18. Steingraber, S. (1997). Living Downstream, Addison Wesley, New York; See also Are the
Experts Lying? Special issue of The Ecologist, 1998.
19. See Ho, 1998, 1999 (ref. 3).
20. Starfield, B. (2000). Is US health really the best in the world? Journal American Medical
Association 284, 483-5.
21. “Gene therapy oversold by scientists who disregard risks” Angela Ryan, ISIS Report May 17,
2001 www.i-sis.org
22. “Parkinson’s miracle cure turns into a catastrophe” by Sarah Boseley, The Guardian, March 13,
2001.
23. See Ho, M.W. and Cummins, J. (2000) Xenotransplantation – How Bad Science and Big
Business Put the World At Risk from Viral Pandemics, ISIS Sustainable Science Audit No.2,
August 2000 www.i-sis.org; also Third World Resurgence 127/128,46-55.
24. See Ho, 1998, 1999 (ref. 3), final Chapter.
25. See Heinemann, J.A., Ankerbaner, R.G. and Amabile-Cuevas, C.F. (2000). Do antibiotics
maintain antibiotic resistance? Drug Discovery Today 5, 195-204; also, “Phasing out antibiotics
will not reduce antibiotic resistance. The irrelevance of natural selection” by Mae-Wan Ho, ISIS
News 6, September 2000, ISSN: 1474-1547 (print) ISSN: 1474-1814 (online) www.i-sis.org
26. See Rasnick D. Auto-catalysed progression of aneuploidy explains the Hayflick limit of cultured
cells, carcinogen-induced tumours in mice, and the age distribution of human cancer. Biochem.
J. 2000: 348, 497-506; also “Rethinking cancer, from cure to prevention” by Brian Goodwin,
ISIS News7/8, February 2001, ISSN: 1474-1547 (print) ISSN: 1474-1814 (online) www.i-sis.org
27. See Ho, 1998, 1999 (ref. 3), Chapter on “The fluid and adaptable genome”.
28. In heterozygous individuals, ie, those with two different copies of the gene, one of which is
defective, recombination occurs during cell division, when the two copies exchange parts, and
the defective copy gets mended. In other instances, the functional copy corrects the defective
copy by substituting for it directly. But even in homozygous patients, ie, those individuals with
two identical, defective copies of the gene, both copies have been found to mutate
spontaneously to regain function. See Waisfisz, Q., Morgan, N.V., Savino, M., et al (1999).
Spontaneous functional correction of homozygous Fanconi anaemia alleles reveals novel
mechanistic basis for reverse mosaicism. Nature Genetics 22, 379-83.
29. “Defective genes can regain function” by Mae-Wan Ho, ISIS News 2, September 1999,
Waisfisz, Q., Morgan, N.V., Savino, M., et al (1999). Spontaneous functional correction of
homozygous Fanconi anaemia alleles reveals novel mechanistic basis for reverse mosaicism.
Nature Genetics 22, 379-383.
30. See Ho, M.W. (1993,1998). The Rainbow and the Worm, The Physics of Organisms, World
Scientific, Singapore.

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Science in Society 13/14 February 2002, ISSN 1474-1574 (print), ISSN: 1474-1814 (online)
Genomics for Health?
Despite heroic efforts to keep up the hype, prospects for genomics – information gathering around
genomes, genes and proteins - look bleaker than ever before, and for good scientific reasons,
according to Dr. Mae-Wan Ho.
A two-day symposium on “The Future of the Pharmaceutical Industry” last December sponsored by
the Massachusetts Institute of Technology came at a crucial time. Research released by the Tufts
Center for the Study of Drug Development shows that the ‘biotech revolution’ has, so far, greatly
slowed drug development cost while increasing cost.
During the last two decades, the average time spent on clinical trials increased from 33
months to 68 months, while the average cost of developing a new prescription drug has jumped to
$802 million from $231 million a decade ago. This figure includes the cost of human trials, pre-
clinical studies, expenses for product failures, and the impact of long development times on
investment costs.
According to an editorial in the December 2001 issue of Nature Biotechnology by David
Horrobin, CEO of Laxdale Research, Stirling, Scotland, most of the top 20 multinational
pharmaceutical companies are not generating in-house the new products needed to sustain the
rates of growth they have enjoyed in the past. “No serious industry onlooker could dispute this
depressing picture”, he wrote.
The key question is, will genomics help? Anthony Sinskey, a co-director of MIT’s Program
on the Pharmaceutical Industry, stressed that the millions of chemicals
sitting on pharma’s shelves need to be investigated. And that it is up to the ‘array makers’,
‘microfluidics developers’, and ‘informatics providers’ to help predict and measure outcomes and
bring products to market.
Horrobin points out, however, that combinatorial chemistry has been around for over a
decade, but yielded relatively few products considering the extraordinary size of the investment.
“Could it be that there is something wrong with the technology in principle, and that the
target choices and the target configurations are fundamentally flawed?” he asked.
The human genome map has cost the public US$3 billion, and hundreds of millions of
pounds in Britain. Thousands of scientists from 20 centres in 6 countries have worked for ten years
or more, only to be overtaken by Craig Venter’s private company Celera.
Venter came up from behind to finish equal in the human genome race, and to burst the
bubble by telling the world that our understanding of the human genome has changed in the most
fundamental ways [2]. “The small number of genes - some 30,000 - supports the notion that we are
not hard wired. We now know the notion that one gene leads to one protein, and perhaps one
disease, is false.” There may be ten times as many proteins as genes, that “can change
dramatically once they are produced”. One simply “cannot define the function of genes without
defining the influence of the environment.”
Investment companies were quick to see the implications, as the myth of genetic
determinism can no longer be sustained. “Mapping the genome could be route to disaster” [3].
Lehman Brothers and McKinsey predicted that the human genome project could bankrupt the
biotech and pharmaceutical industry. The “information overload” will cost much more than
previously thought. Genomics “threatens to increase not only the associated research and
development costs, but also the average cost per new drug.”
Instead of cutting the losses and retreating, proponents simply redoubled their effort to
keep up the hype, and our governments are set to bail out another ailing industry by sinking in even
more of our tax money.
The American Museum of Natural History put on a lavish exhibition, “The Genomic
Revolution”, funded by a corporate-friendly charity [4]. It predicts that, “By the year 2020 it is highly
possible that the average human life span will be increased by 50 percent; gene therapy will make
most common surgery of today obsolete; and we will be able to genetically enhance our capacity
for memory”. At the same time, an art show promoting genetics called “Paradise Now” has gone on
tour around the country.
Our genome scientists have distanced themselves from the crude propaganda. Instead,
they say the human genome map is just “the end of the beginning”, and much more money is
needed before the goods can be delivered in cancer cures, eradication of disease, genetic
enhancement, gene therapy, personalised medicine and a prescription of lifestyle based on our
genetic makeup.
The British government committed some £2.5 billion to genomics over the next five years
in 1999 [5]. The Wellcome Trust, a big charity long regarded as friendly to the pharmaceutical

15
industry, is giving £300 million to Cambridge’s Sanger Centre for genomics research [6]. The
centre is changing its name to the Wellcome Trust Sanger Institute.
Genomics is a huge undertaking. ‘Health genomics’ alone includes information gathering,
not just on the human genome, but the genomes of ultimately all animals, plants, fungi, bacteria
and viruses that ‘serve as disease models’ or cause or transmit diseases of one form or another
[7].
Complete genomic sequence is already available for yeast, fruit fly and nematode; and
mouse, rat, zebrafish, chicken and dog are well on the way. Within the next five years, complete
genome sequences will be available for all model organisms used in biomedical research.
In addition, the genome of hundreds of viruses and bacteria associated with major
infectious diseases are sequenced, with hundreds more to follow. Genomes of many protozoa
parasites are available including those associated with malaria, sleeping sickness and
Leishmaniasis. And insect vectors, such as the mosquito, Anopheles gambiae, and the Aedes
species, will also be sequenced.
Hundreds to tens of thousands of genes will be identified each genome. Then, one needs
to find out which genes are transcribed under different conditions, in ‘transcriptomics’, and what
proteins are made and what each protein does, in ‘proteomics’. The crystalline structure of each
protein will have to be determined in big synchrotron X-ray facilities. That’s not all.
There are hundreds of variants of every gene, and any two human individuals will differ by
one in every 500 bases in their genome. These single nucleotide polymorphisms (SNPs), millions
of them, account for most of the genetic differences between individuals, and are the great white
hope to ‘personalised’ medicines. A public-private consortium of the Wellcome Trust and 13
pharmaceutical companies is supporting mapping and analysis of SNPs in the Sanger Institute plus
four other centres in the United States.
In addition, ‘genome-wide’ scans for patterns of genes expressed and proteins synthesized
are made with gene chips and protein chips to find out what happens in different diseases under
different conditions. Endless reams of data will be generated, demanding ever bigger and faster
computers to compile and analyse, and much more efficient and compact means of data storage.
The databases will be owned by companies, available to paid-up subscribers only. And of
course, the genes, the proteins, ten times as many as genes, and millions of SNPs identified will all
be patented.
Only a fool would think any useful knowledge could automatically emerge from this vast
graveyard of information. More seriously, genuine scientific research will cease as patents and
proprietary databases place severe restrictions on the use of material and information.
The Wellcome Trust website tells us that pharmaceutical companies believe they will get
many additional “druggable targets”. “Currently, the entire drug cabinet is focussed on just 483
targets”, so “enormous possibilities for new therapies exist” [8]. The SNPs are even better.
Pharmaceutical companies are “eagerly awaiting this flood of new information about human
variability” to accelerate the development of drugs based on individual differences [9].
In reality, the prospects for genomics look bleaker than ever before, and creeping doubt
has been developing into full-blown scepticism (Box 1).

Box 1
Creeping doubt on genomics developing into full-blown scepticism
A row has broken out in the European Parliament over the European Commission’s proposal for its
sixth framework for research funding, which covers public research funding within EU countries for
the next 6 years. Members of the European Parliament (MEPs) and researchers criticise the
proposal for focussing too much on genomics and biotechnology, and not enough on individual
diseases like cancer, diabetes and Alzheimer’s.
Plans to build a new genomics facility in Grenoble is reported to be in jeopardy because of
a lack of funding. The project is a joint venture between the European Synchrontron Radiation
Facility, the Institut Laue-Langevin and the European Molecular Biology Laboratory, and was due
to be finance in large part by an industrial consortium.
Russia is cutting its spending on genomics research through its 12 year old national
Human Genome Program by 50%, and putting the money into a general pot for basic research.
Sources:
1. “EU pols: Health funding plan too biotech-heavy” by Peter O'Donnell, Brussels, Reuters Health,
November 13.
2. “Genomics facility struggles to find funding”; SPIN No. 526, item 25, 22 October 2001.
3. “Government spurns human genome effort”, SPIN No. 529, item 22,12 November 2001.

16
 Sir David Weatherall, one of UK’s most eminent geneticists, has warned [10], “the
remarkable complexity of the genotype-phenotype relationship has undoubtedly been
underestimated.... It has led to many statements being made about the imminence of accurate
predictive genetics that are simply not true”. Nevertheless, Sir David still believes that the
information gained will eventually result in accurate predictive genetics. But will it [11]?
We already know that environmental variables - such as hygiene and living conditions,
exposure to toxic substances, social class, poverty, diet and other ‘lifestyle’ habits - can all
significantly influence disease and disease progression across all ethnic groups and major genetic
differences. For the vast majority of diseases, the environmental variables will swamp the effects of
‘susceptibility genes’.
‘Susceptibility’, by definition, denotes weak linkage, and can never give firm predictions.
Moreover, it describes the population attribute of certain gene variants, and says nothing at all
about the susceptibility of individual human beings. Thus, ‘personalised’ medicine based on
susceptibility genes or SNPs is scientific nonsense at best. At worst, it can be an excuse for
genetic discrimination and eugenics.
Dr. Richard Strohman, Emeritus Professor of University of California, Berkeley, doubts that
genomic information will have much impact on human life-span and health [12].
Genes influencing general health and longevity are numerous, perhaps hundreds or even
thousands, but their effects are confounded by interaction with the environment. It is simply
impossible to pin them down. Scientists face a ‘computational barrier’ because the possible number
of interactions that have to be taken into account far exceeds our ability to cope with them, even
with the fastest, biggest computer.
The potential to longevity is equally present in a wide variety of genomes, with
environmental factors dominating. And, if through genomics, both of our major diseases, cancer
and cardiovascular disease, were eliminated, the total increase in life expectancy is estimated to be
less than three years.
But then, it is the quality of life, and not longevity that people rate highly.
The improvement in hygiene, medical care and public health measures in the first half of
the 20th century added nearly 30 years of life-expectancy to the populations in the G7 countries,
which had little to do with genetics. This must now be the priority for Third World countries. Instead
of genomics, let them have decent living conditions, nutrition and hygiene.
Conversely, recent history of treating cancer and other diseases of the aged through gene-
based technology is not reassuring. An earlier report has concluded, “genomics combined with
related technologies of computer aided drug design and combinatorial chemistry linked to high
throughput screening” have not improved drug discovery, and show little evidence that they will
provide the bridge from genome to function even at the level of the protein.
Strohman fears that we are “providing more and more resources for less and less advance in
a span of problematic quality of life”. And, “as far as HGP is concerned, we are on the road to
finding technological miracles for the genomes of the few using resources that could bring
substantial benefits to the many if applied as preventive measures to the general population.”
Enthusiasm for genomics from industry has been equally muted. Allen Roses, scientist
from the Genetics Directorate of Glaxo Wellcome, wrote an article in Nature, ostensibly to promote
‘pharmacogenetics’ - the study of how genetic differences influence individual response to drugs
[13]. But a different sobering message came across.
It is very expensive to validate the new drug targets, so, pharmaceutical companies prefer
to make new variants of old drugs. “The best-validated targets are those that have already
produced well-tolerated and effective medicines.”
Roses distinguished ‘discovery genomics’ from ‘discovery genetics’. The former uses
databases of DNA sequence information to identify genes and families of genes for possible drug
targets, but these are not known to be associated with any disease. The latter uses human
populations, like the human DNA Biobank collection [14], to identify disease-related susceptibility
genes. But susceptibility genes are not drug targets. They “will not be tractable targets or amenable
to high throughput screening methods to identify active compounds”.
Companies now 'mine' sequences from the human genome, to identify gene families that
have sequences similar to one that is known. But, although Roses does not say so, this approach
is full of pitfalls, because similar sequences have been found to have entirely different functions,
just as completely different sequences can have the same function.

17
 The major challenge remains the validation of the drug target. “Each failure is very
expensive in lost time and money”. Though in truth, the pharmaceutical industry is still, by a wide
margin, the most profitable on earth [15].
The new methods promoted, such as ‘genome-wide scans’ are generating patterns so
complicated and so variable that they defy efforts to interpret or to validate the methods
themselves. They have not led to specific targets for drugs.
There are not even experiments demonstrating that the differences in tissue expression of
a particular gene are related to the disease. Neither have these screening methods been applied to
rare mutational diseases, ie, ‘single gene disorder’ for “proof of principle” that they give any useful
information. Yet these methods are now the major investments in several research programmes on
Alzheimer’s disease.
Several genes are found to be responsible for rare early-onset form of Alzheimer’s
disease, and a susceptibility gene has been identified for the common late-onset form. But routine
genetic screening is not recommended by consensus groups for either form of the disease, on
account of the poor predictive value of the gene tests. Nor have these genes yielded useful targets
for drugs (Box 2).

Box 2
Genetics and genomics of Alzheimer’s disease
Less than 5% of people with Alzheimer’s disease have a strong family history of the disease, with
early-onset under 60 years of age. About a fifth to half of these cases are attributed to mutations in
three genes coding for the amyloid precursor protein (APP), and presenilin 1 and 2 (PS1 and PS2).
The mutations for APP and PS1 are dominant, that is, the presence of one copy of the mutant gene
will give the disease. (A person has two copies of each gene, one from mother and the other from
father.) However, the severity of the disease is variable and unpredictable.
APP is the precursor of the beta-amyloid which accumulates in the brains of Alzheimer’s
patients. The function of PS1 and PS2 are not well understood, they appear to be involved in
signalling within and between cells, and influence the processing of APP into beta-amyloid.
The more common, late-onset Alzheimer’s disease is not linked to APP, PS1 or PS2. A
particular variant of the blood protein apolipoprotein E gene, apoE4 has been identified as a
‘susceptibility gene’. Case-control studies comparing the genotypes of people with and without
Alzheimer’s disease suggest that people with the disease are about 3 times more likely to carry a
copy of the apoE4 than people without the disease, and 8 to12 times more likely to carry two
copies. However, this claim has been contested.
At least one large study failed to confirm the link between apoE4 and late onset
Alzheimer’s disease. Another study found that the mutation is not predictive of Alzheimer’s disease
alone as it also occurs in other kinds of dementia. Within the same gene, certain markers may be
associated with increased risks while others with decreased risk of disease. It is clear that
association alone without knowledge of biological relevance is of no use for the development of
drugs.
Although about 34-65% of Alzheimer’s patients have at least one copy of apoE4, so do 24-
31% of unaffected adults. The association between apoE4 and dementia is not seen in all
populations either.
A possible target for drug intervention in Alzheimer’s disease are the presenilins, It was
thought that by inhibiting presenilin, less beta-amyloid would be produced. Unfortunately, presenilin
has other vital functions besides processing APP. And no useful therapeutic treatment has
resulted.
On account of the large uncertainty in linkage between the mutant genes identified and
disease development and progression, routine gene testing is not recommended by consensus
groups in the US and in Britain.
The Public Health Genetics Unit in Cambridge gives the following advice regarding early-
onset and late-onset Alzheimer’s disease on its webpage:
“If a mutation has been detected in an affected individual, accurate testing is possible for
the same mutation in other family members, but a positive test does not necessarily give a good
indication of the severity of disease.”
“There is no reliable predictive genetic test for late-onset Alzheimer’s. The APOE4 allele
can be detected easily and rapidly; however, a positive test result does not guarantee that disease
will develop, nor does a negative result rule it out.”
Sources:

18
1. Research directions in Alzheimer’s disease, Wellcome News Supplement 2, Wellcome Trust,
1998.
2. Alzheimer’s disease, By Alison Stewart, Public Health Genetics Unit, Cambridge UK.
phgumaster@srl.cam.ac.uk
3. Ritchie K, Kotzki P-O, Touchon J and Cristo J-P. Characteristics of Alzheimer’s disease
patients with and without ApoE 4 allele. The Lancet 1996, 348, 960.
4. Itabashi S, Arai, H, Higuchi S, Sasaki H and Trojanowski JQ. APOE 4 allele in Alzheimer’s
and non-Alzheimer’s dementias. The Lancet 1996, 348, 960-1.
5. Roses AD. Genetic associations. The Lancet 1998, 351, 916.
6. “Risks seen in potential drugs for Alzheimer’s disease” by Marilyn Larkin, The Lancet News,
1999, 353, 1245.
So where does that leave pharmacogenetics? “Pharmacogenetic approaches will no doubt
confirm what clinicians already know - disease diagnosis is not easy nor necessarily homogeneous
and accurate.” Doctors already classify diseases according to their differential response to existing
drugs.
The SNPs can speed up discovery of susceptibility genes, but as already mentioned, these
are not automatically suitable drug targets, and problems of validation remain. Could SNPs not be
used to select for patients that are more likely to respond positively to new drugs? Roses pointed
out that regulatory authorities might justifiable look askance at this practice, and would be
concerned that when the drug is sold, those patients who do not have the right SNPs might be sold
the drug by mistake.
Most of all, Roses warned that gene tests based on susceptibility genes and SNPs cannot
be equated with those used for ‘single gene’ disorders. He wrote, “recommendations for patients
and relatives with these ‘complex’ diseases are frequently miss-stated with authority by authors
whose only experience is in mutational diseases”.
In other words, gene tests based on susceptibility genes and SNPs are far less reliable or
predictive. But even those based on single genes cannot give accurate prognosis for the
individuals concerned.
To sum up, genomics is of no benefit for the health of nations. It is not even of clear benefit
for drug development. Genomics is a hangover from the genetic determinist ideology that has
driven the human genome project. The most valuable lesson of the human genome map is
precisely in exposing the error of this pernicious ideology. That is perhaps worth all the tax money
that has been spent. Genetic determinism has misguided the policies of nations and has been
responsible for inspiring the worst excesses of genetic discrimination and eugenics. Genomics and
the associated human DNA BioBank project [14] are in danger of re-igniting those excesses. Those
perceived to be ‘disabled’ or ‘defective’ are already being treated as objects and denied any voice
[16].
There is an urgent need for a sweeping change in direction in biomedical research if we
are to truly invest in the health of the nation [15].
1. “Big Pharma, On the Ropes, Says it Knows What it Wants from Genomics. But
Will That Spur a Turnaround?”by Kirell Lakhman, GenomeWeb LLC editor, December 14,
2001.
2. “A Map to Nowhere, The genome isn't a code and we can't read it”, by Tom Bethell, The
American Spectator, April 2001.
3. “Mapping the genome could be route to disaster” Leo Lewis, The Independent on Sunday,
Business, 11 Feb., 2001.
4. PR for the 'Book of Life' by Jackie Stevens, The Nation, 21 November
2001http://www.thenation.com/docPrint.mhtml?i=special&s=stevens20011121
5. “UK to establish population DNA database” by Mae-Wan Ho, ISIS News 7/8 February 2001,
ISSN: 1474-1547 (print), ISSN: 1474-1814 (online) www.i-sis.org
6. “Sanger Centre welcomes gene funds with a new name”, SPIN No. 526, item 3, 22 October
2001.
7. The Multi-Regional Consultation on Genomics and World Health, Sofitel Central Plaza,
Bangkok, July 23-25, 2001.
8. The Human Genome. What next? The Wellcome Trust
www.wellcome.ac.uk/en/genome/futsciwha.htm
9. The SNP Consortium. The cutting edge. The Wellcome Trust
www.wellcome.ac.uk/en/1/biovensnpsnp.html
10. The Human Genome, Genome and society. The Wellcome Trust
www.wellcome.ac.uk/en/genome/futethgas.htm

19
11. Ho MW. The human genome sellout. Third World Resurgence 123/124, 2000, 4-9, also ISIS
News 6, September 2000, ISSN: 1474-1547 (print), ISSN: 1474-1814 (online) www.i-sis.org
12. Strohman RC. Genomics and human life span - what's left to extend? Nature biotechnology
2001, 19, 195.
13. Roses AD. Pharmacogenetics and the practice of medicine. Nature 2000, 405, 857-65.
14. “Human DNA “BioBank” Worthless” by Mae-Wan Ho and Nick Papadimitriou, ISIS Report, to
be circulated.
15. “The national health crisis and ‘health genomics’” by Sam Burcher and Mae-Wan Ho, ISIS
Report, to be circulated.
16. “The silenced targets” by Gregory Wolbring, ISIS Report, to be circulated.

Human DNA ‘BioBank’ Worthless

‘Health genomics’ promises to ‘revolutionalise healthcare’ in the new millennium. Britain is forging
ahead with plans to set up a human DNA ‘Biobank’ collection. Dr. Mae-Wan Ho and Nick
Papadimitriou tell us why the Biobank assets are not worth the huge investments required, and
call for wide-ranging open debate.
A decade and hundreds of millions invested in sequencing the human genome left the British
government with the problem of how to justify the expense. As genes in themselves tell us little
about the vast majority of diseases, the hope is that studying how genes interact with environment
and lifestyle will bring returns on the huge outlay. That led to the idea of a human DNA collection.
The plan is to recruit a cohort of 500,000 volunteers in the age group 45-64 to provide DNA
in blood samples. The samples are to be analysed and stored alongside personal data and medical
records. This would enable geneticists to identify the genes associated with increased susceptibility
to diseases, to find ways in which genetic variation can be used to ‘personalise’ treatment of
diseases, and to elucidate the complex interactions between genes and environment in their effects
on health.
The MRC carried out a consultation more than a year ago [1] with 350 members of the
public, which included spokespersons from religious and ethnic groups and relatives of the
seriously ill. Interviews were conducted with individual GPs and nurses, and representatives from
organisations with a “special interest” in genetics research. “Controls” were imposed on the
selection of the consulted in order to exclude those with a “strongly negative view” about medicine
or genetics.
A workshop on protocol development was held in April 2001, and a report published on
Wellcome Trust website in August [2]. This is now subject to further reviews, to be finalised by the
Protocol Development Committee and published in January 2002. Our contact says that this is
when the public debate is supposed to begin. The project has changed its name, for at least the
second time, from ‘Biomedical Collection’ to “BioBank UK.”
Despite the selective nature of the consultation, a plethora of concerns were raised by
those consulted. Special interest groups had mixed views on the Wellcome Trust and the MRC.
Some believed that “both organisations were subject to pressure from pharmaceutical companies
and the Government, and too willing to work to an agenda against the interests of people with
disabilities” [3].
In the subsequent workshop on protocol development, further problems emerged particularly
regarding the logistics of co-ordination, and the financial implications. The MRC has committed
20million to the project, and the Wellcome Trust is set to commit the same, although this amount of
funding clearly falls far short of what is needed. But funding is not the only problem.

Who will participate, and what will be studied?

The cohort will consist of volunteers who would ‘opt in’, and the study will be prospective, ie, the
volunteers must be healthy at the start. Unfortunately, the general public knows next to nothing
about the proposal. Recruitment will be difficult, as there is no clear benefit to the participants. And
even if a sufficient number of volunteers can be recruited, there might be insufficient numbers
falling ill or dying to give statistically significant results.
More importantly, there will be variations due to geography, social class and ethnicity. Are
those to be treated as “background (“nuisance”) variables”, or will the cohort be specifically
designed to investigate these sources of variation? The suggestion was made that the study might
investigate the interaction between genes and social class! The negative influence of social class
on disease is well documented. But no one has seriously thought there might be class-specific
genes.

20
 Ethnicity too, is important, but for another reason. The effects of individual genes are often
altered in dramatic ways, simply because the genes are in a very different genetic background (the
combination of all other genes in the genome) in different ethnic groups. Geography was not even
discussed, for the effects of environmental pollutants are strictly off the agenda, as it is also known
that they are responsible for damaging every organ system in our body, including our genes.
The study is intended to focus on diet, exercise and other ‘lifestyle’ habits. Again, there is
already overwhelming evidence that lifestyle factors can significantly prevent disease and slow
disease progression across ethnic groups that differ in thousands, if not tens of thousands of
genes.
What all this means is that any genetic susceptibility will be swamped by the social and
environmental factors, ie, geography, social class, ethnicity, and lifestyle. It is hard to see how
there can be significant findings from the BioBank project that could justify the huge investments
called for. It is a hangover from the human genome project, and still driven by the same genetic
determinist ideology that has been thoroughly discredited as the human genome map unfurled [4].

How will the samples and data be collected, and what sort of data?
The collection and analysis of samples is already a daunting task, and it will take place in many
regional centres, with central co-ordination. In addition, a massive longitudinal follow-up database
is to be created. The problems of co-ordinating the efforts are immense, and include compatibility
between different clinical systems, quality control, data storage, maintenance of anonymity, and
linkage between different centres. Not the least of the problems is a lot of extra work for nurses and
GPs, both already under intolerable pressures, and quite unable to cope from their normal
workload [5].
The diseases studied are wide-ranging, and include cardiovascular disease, diabetes and
metabolic disorders, respiratory diseases such as asthma and infections, mental disorders such as
Alzheimer’s and Parkinson’s, cancers, and musculoskeletal disorders such as osteoporosis,
arthritis and spinal disc degeneration.

How will informed consent be obtained?

There was a strong feeling that proper informed consent must be obtained, and that it must be
made clear to the participants as to what they are consenting to. But what if the collection is to be
used for a different purpose in future, to study other diseases, or intelligence as was suggested or
other behaviour? Would participants be required to give carte blanche consent?

Should strict anonymity be maintained under all circumstances?

Given that the aim of the project is to correlate individual DNA samples with lifestyle and health
records, the data must be coded to maintain anonymity. How could anonymity be maintained, and
who should safeguard this anonymity? There was a suggestion that oversight by an independent
body would “reassure the public that the data were being managed and used in the public interest”.
Will industry have access to the database? And will the police have access to it for forensic or
purely civil surveillance purposes, or as governments might demand, as ‘emergency anti-terrorist
measure’?
If, in the course of analysing the DNA samples, a gene associated with a serious disease is
found, should anonymity be broken so that the participants could be informed, in particular, if the
disease could be prevented by treatment? And should treatment be given? It would be unethical
not to, but that would mean the samples will be lost to the study.
And if the participants were to be informed of their genetic status, they would have to tell
their insurance company, and they may be refused insurance they might otherwise obtain, or be
denied employment. The British public is overwhelmingly opposed to insurance companies using
genetic information to decide whom to insure or to set premiums (Box 1).

Will the DNA Biobank be exploited by private companies?

The answer is almost certainly yes, otherwise there will be no point to the project. Top level
discussions were held by a panel selected by Health Secretary Alan Milburn, to draw up a green
paper around the possibility that DNA samples held by the NHS might be passed on to biotech
companies [6]. The government’s Economic and Social Research Council is to set up a research
centre to explore the social and economic implications of genomics (Box 1). And £30m has been
invested in the NHS to make it a “world leader in genetics” [7].
The Human Genetics Commission insisted back in 2000 that findings from this research
would not readily be made available to pharmaceutical companies [8]. What that means is that no

21
individual medical record will be given to the company, and anonymity will be maintained, but
commercial exploitation will go ahead all the same. Pharmaceutical companies are already
reportedly eagerly awaiting the discovery of ‘druggable targets’ and personalized medicine [9].
Pharmaceutical companies will be able to ‘mine’ this public database the same way they have
mined the human and other genome sequences in the public domain, and will be patenting gene
sequences and genetic medicines arising from the database. One of the potential uses of the
database may be to encourage people to change their diet or lifestyle to improve their health.
Companies, however, have a vested interest not to promote a change in habit or lifestyle so they
can sell drugs.

Will the findings lead to genetic discrimination?

There is currently an agreement between the Government and the insurance industry on a five-
year freeze on using genetic tests, except for high-value policies. Tests for genetic susceptibility to
diseases such as cancer can continue to be added to an approved list and used to determine
access to high-value policies throughout the five year freeze.
Four out of five people in Britain believe that genetic information should not be used in
setting insurance premiums (Box 2). The members of the public consulted by MRC expressed
similar concerns.
But one of the most important objections is the unreliability of such information.
Susceptibility genes, even if they exist, are by definition, uncertain. In particular, they are attributes
of a population, and not of any single individual [10]. The quest for ‘personalised’ medicine based
on individual genetic makeup is simply scientific nonsense.

Need for open wide-ranging debate

The Icelandic DNA population collection – the first and only in existence to-date - was set up
historically with minimum public consultation. As a consequence there was no opportunity for public
debate on any of the issues outlined above. We are told that the findings of the consultation on the
UK BioBank are “statistically insignificant.” This may justify ignoring the concerns expressed by the
members of the public who were actually consulted.
It is astonishing that this large research project, fundamentally flawed, and with such
disturbing implications should have reached the protocol stage without any real public debate. This
must now take place without delay.

1. Public Perceptions of Human Biological Samples. MRC/Wellcome 2000.

http://www.mrc.ac.uk/PDFs/biocoll.pdf
2. Report of the UK Population Biomedical Collection Protocol Development Workshop, The
Wellcome Trust, Department of Health, MRC, www.wellcome.ac.uk/PDFs/pop_rep.pdf
3. Public Perceptions of Human Biological Samples. MRC/Wellcome, Summary Report, WC02-
21261K/9-2000/MC, www.mrc.ac.uk/PDFs/biocollsumm.pdf
4. See “Human genome map spells death of genetic determinism” by Mae-Wan Ho, ISIS News 7/8,
February 2001,
5. See “Health genomics will worsen national health crisis” by Sam Burcher and Mae-Wan Ho,
ISIS Report, to appear.
6.Fury at plans to sell off DNA secrets. By Anthony Barnett & Gaby Hinsliff, The Observer, 23/9/01
7.More scientific breakthroughs expected from genetics revolution. NHS update 19/4/01
www.nhs.uk/orgs/doh/news/2001/april/231.asp
8.Whose Hands on Your Genes? Human Genetics Commission, 2000.
www.hgc.gov.uk/business_consultations2.htm
9.The SNP Consortium The cutting edge. The Wellcome Trust
www.wellcome.ac.uk/en/1/biovensnpsnp.html
10. Ho MW. The human genome sellout. Third World Resurgence 2000,123/124, 4-9; also ISIS
News 6, September 2000, ISSN: 1474-1547 (print), ISSN: 1474-1814 (phone).

Box 1
Government-funded research centre to explore the social and economic implications of
genomics
The UK Government’s Economic and Social Research Council (ESRC) plans to set up a research
centre to explore the social and economic implications of genomics. As a first step, ESRC
commissioned the Centre for Research on Innovation and Competition (CRIC) at Manchester
University and the US based Institute for Alternative Futures (IAF) to outline the direction the

22
research should take. CRIC was set up by ESRC in 1997 and, to quote its own web-site, “its
ambitious aim is to contribute to the fundamental understanding of the complex issues that
underline and link together innovation and competitiveness.” CRIC studies the contribution of
innovations to the competitiveness of British companies and services.
IAF is staffed by self-styled “futurists,” and includes Alvin Toffler, prophet of “third wave”
economics among its founders. IAF promotes ‘adaptive decentralised’ approaches to economics, is
committed to helping clients fulfil their “preferred futures” and champions free market enterprise.
While ostensibly post-industrial both in its advocacy of individualistic self-fulfilment and in its
sensitivity to cultural microclimates, IAF is likely to promote genomics precisely because one of the
professed aims of genomics, the tailoring of drugs to suit specific genes, is the sort of adaptable
niche targeting IAF favours. Several documents produced by IAF take the view that market forces
provide the fertile ground necessary for the exploitation of genomics. One of these, “21st Century
Health Care in Latin America and the Carribean,” sponsored by Smith Kline Beecham, makes the
following remarks about genomics:
• Therapeutics will have begun to customise by gene typing for drug metabolism by 2005.
• Genomics is now providing new therapeutic proteins. This will expand to include small
molecule drugs by 2005 and cancer vaccines by 2020.
• Therapy for single gene defects will take place between 2010 and 2020.
• Genomics will hasten the shift in health care to a paradigm of forecast (disease likelihood),
prevent (aggressive action, wherever possible), and manage (optimal, customized treatment
when necessary).
• The combined responses of these two agencies will, in all likely-hood justification for the more
“innovative” investments and partnerships with industry on the part of MRC and the
Department of Health.

Box 2
British public opposed to use of genetic information by insurance companies
A survey of social attitudes compiled and published by the National Centre for Social Research
showed 8 out of 10 people opposed to insurance companies using genetic test results. The
Government’s decision to impose a five-year moratorium is in tune with public opinion.
The government and the Association of British Insurers recently agreed that, from the start
of this November, consumers would be able to buy all but the most expensive insurance policies
without having to disclose genetic test results. So far, the only genetic test approved for insurance
purposes is for the hereditary degenerative disease Huntington's chorea.
The British Social Attitudes survey findings confirm those of the Human Genetics
Commission, a government advisory body. However, 75 per cent of people believe that within the
next 25 years, insurers will be using genetic data to calculate premium levels.
The Consumers’ Association is calling for an outright ban on insurance companies using
genetic test results and is concerned that widespread use of genetic information could lead to an
uninsurable “genetic underclass”.
Source: “Public opposition to genetic testing” by Vivienne Russell, 28 November, 2001, London,
Health Media Ltd 2001

The silenced targets

Amidst the claims of gene and nanotechnology to fix perceived disabilities, impairments and
diseases and to eliminate world hunger, Dr. Gregor Wolbring looks critically at issues of decision-
making and control, raising key questions. Who decides what is good for humankind? Who shapes
research agendas and government policies? Who decides what needs fixing? How are societal
structures affected? Can we draw a line between technologies if they are based on the same
societal philosophy?
1) Marginalized groups and people with characteristics targeted by the new technologies
are not those answering these questions
To give two examples,
a) Food biotech: justifications for GM food are that it will end world hunger and increase world food
production. But countries where hunger is prevalent are typically excluded from the debate.
Furthermore, should there be a technological fix, or is a societal solution more appropriate? Can
gene technology prevent hunger or should the cultural/societal frameworks under which food is
produced, sold and disseminated be changed?

23
b) Human genetics: a major justification for advancing human applications of gene technology is
the prevention of suffering, disabilities, diseases and gene ‘defects’. One of the first targets was
Down’s syndrome. Yet, people with Down’s syndrome did not demand predictive tests to prevent
the birth of people who will have Down’s syndrome. Instead, they want access to and acceptance
by society. However, no one asks their opinion; they are merely treated as objects justifying the
use and development of gene technology. The same questions apply. Is Down’s syndrome a
medical or societal problem requiring a medical or societal solution? Down’s syndrome people see
themselves as different, not as a disease.
2) Predictive tests to prevent the birth of people with undesirable characteristics will impact
how society views and treats people with these characteristics
The disability community argues that testing for disabilities, diseases and impairments will increase
prejudice against people who are labeled as such. How do other targeted groups feel?
Many argue that, “sex selection lowers the status of women in general and perpetuates the
situation that gave rise to it” [1, 2]. And “the availability of procedures to select the sexual
orientation of children would contribute to discrimination and prejudice against lesbians, gay men
and bisexuals” [3].
If the danger of increased prejudice is real for sex and sexual orientation, then this danger
is just as real for ‘disability’. As Andrew Brown of Amnesty International says, in discussing tests for
Down’s syndrome, “if society regards the presence of such disease as an acceptable reason for
aborting a foetus, this makes it harder to preserve equality of respect for those already born. One
might argue that their human worth, if not their human rights, have been diminished” [4].
3) Animal Farm Philosophy (some are more equal than others)
With gene/nanotechnology, we can redefine what it means to be human and which characteristics
are desirable. One assumes that a broad coalition would form between the groups/individuals
viewed as having unwanted characteristics, questioning the dynamics by which some
characteristics are ‘unwanted’ and the preference for medical solutions, i.e. predictive testing and
subsequent cure or termination.
On the contrary, emotional and argumentative frameworks are developed that allow some
groups to question ‘unwanted’ labels and allow some ‘unwanted characteristics’ to be excluded
from medical solutions, but simultaneously deny other groups the same arguments [3,5]. This
makes a broad alliance impossible, as different groups/individuals will be in direct conflict of
interest.
4) We can’t draw a line in the usage of the technologies based on characteristics
This Animal Farm Philosophy assumes that we can draw the line somewhere whenever the issue
of predictive testing and option of cure or termination arise. But can a line be drawn?
Bob Williamson, director of the Murdoch Institute for Research into Birth Defects and
Professor of Medical Genetics at Melbourne University, says, “…most people… have fairly clear
views on what level of disability appears to them to be consistent with a worthwhile outcome to
themselves. I am actually irritated if people say, ‘everyone thinks that condition is so bad that we
should have prenatal diagnosis and termination of pregnancy but condition Y (e.g., cleft palate)
isn’t bad enough’. The truth is you can’t say that in terms of a condition, you can only say it in terms
of a woman, of her family, her perceptions, her social context, her economic context…. We must
avoid categorizing diseases as severe or not severe. This can only be seen in the context of the
overall holistic situation of a family and individuals” [8]. Others share Williamson’s argument that no
distinction can be made between disabilities [5,9,10].
If socio-economic context and personal or family circumstances are key to eugenic
decisions, not the disability or disease or gene ‘defect’, then decisions leading to sex de-selection
and sexual orientation de-selection (if they find the gene), should be seen in the same light [6,7,10].
5) The targeting of a characteristic will not be limited to a pre-birth timeframe
Once pre-birth eugenic solutions are established for a certain characteristic, after-birth eugenic
measures like infanticide, DNR (‘Do Not Resuscitate’) and euthanasia might be used to deal with
people living with the ‘undesirable’ characteristic. Indeed, in countries that can’t afford the
technologies, such measures might be their only option.
Peter Singer, a Princeton University philosopher, says [11], “In the modern era of liberal
abortion laws, most of those NOT opposed to abortion have drawn a sharp line at birth. If, as I have
argued, that line does not mark a sudden change in the status of the fetus, then there appear to be
only two possibilities: oppose abortion, or allow infanticide” (p. 210). “If we consider it justifiable for
a women to kill her fetus in the womb… because the fetus has been shown to have Down
Syndrome, this judgement must have some bearing on our views about human life immediately
after birth” (p. 85).

24
6) Distinction between genetic de-selection (negative eugenics) and genetic enhancement
(positive eugenics) is untenable
Robert Edwards, creator of the first test tube baby, predicts that the increasing availability of
prenatal screening for genetic diseases gives parents a moral responsibility not to give birth to
disabled children. “Soon it will be a sin of parents to have a child that carries the heavy burden of
genetic disease. We are entering a world where we have to consider the quality of our children”
[12].
Edwards’ comments provide a clue for another consequence. If parents are obliged to
consider the quality of their children, won’t this mean that they also have to enhance the genes of
their children if these improve the children’s quality of life?
7) Distinction between genetic cure and genetic de-selection is untenable.
If we believe in biological eugenics, then gene therapy, sold as one of the ultimate goals of gene
technology, is its extension. If we believe that a certain characteristic is to be avoided, it becomes
hard to say “No” to gene therapy, which seems to have two advantages over de-selection. They
relieve women from the ordeal of abortion or in vitro fertilization (IVF). ‘Defective’ characteristics
can be cured in utero or later in the child, giving the child a choice.
8) Distinction between somatic and germ line gene therapy is untenable
There are two types of gene therapies. Somatic gene therapy fixes a ‘defective’ gene in cells other
than egg and sperm, by delivering a ‘non-defective’ gene to the target cell. Changes are not
passed on to children, allowing the option of birth and later treatment. Germ line gene therapy
includes genetic changes in reproductive cells, the egg and sperm. This altered genetic make-up
would be passed on to children and following generations.
Some people feel they can draw a line between somatic and germ line gene therapies,
allowing the former and prohibiting the latter, because the consequences of somatic gene therapy
are confined to the person whereas germ line gene therapy can affect future generations. However,
there are many problems with this distinction, not the least of which being that it can’t be
guaranteed that somatic gene therapy does not modify reproductive cells. Germ line gene therapy
might work in some cases where somatic gene therapy doesn’t. Germ line gene therapy might
seem more cost effective because it fixes the problem irrevocably, whereas with somatic gene
therapy the same ‘defect’ might occur in offspring. Finally, justifications for somatic gene therapy
are based on fallacious assumptions that it is acceptable for individuals to put themselves at risk,
and not the population.
If as a society we embrace biological eugenics, then it’s only fair that society bears the
danger. Furthermore if somatic gene therapy does not work but germ line gene therapy does, can
we oppose the latter? And if somatic gene therapy is safe, can we see germ line gene therapy as
unsafe? I don’t think so.
9) No distinction between genetic and non-genetic de-selection
The same principles apply to non-genetic characteristics. Ultrasound is routinely used during
pregnancy, and can detect, for example, cleft palate. A study in Israel revealed an abortion rate,
after detection for cleft palate, of 95.8% [13]. In the UK, the annual birthrate for babies with cleft lip
decreased between 1982-1992 from 820 to 464 births, and the birth of babies with Talipes (not
straight legs) decreased from 2041 to 747 births per year [14]. A study that investigated the use of
prenatal ultrasound to detect heart defects in 12 European counties found that the termination rate
for this ‘defect’ ranges from 3.1 to 70%, depending on country [15].
10) No distinction between genetic and non-genetic enhancement
Nanotechnology promises much. Applications for the human body are similar to gene technology in
scope and philosophy. It is seen as contributing to “ a wide range of assistive solutions, from
prosthetic limbs that adjust to the changes in the body, to more biocompatible implants, to artificial
retinas or ears. Other opportunities lie in the area of neural prosthesis and the “spinal patch,” a
device envisioned to repair damage from spinal injuries” [16]. These applications are nothing more
than non-genetic enhancements, fitting a philosophy “that humanity can, and should strive to higher
levels, both physically, mentally and socially” [17].
11) De-selection of characteristics judged unwanted by societies (negative eugenics) will be
viewed as ‘the right, responsible, moral thing to do’, as will cures and enhancements
One study found that because of pressure from hospital staff, one in four pregnant women
underwent amniocentesis. Of those whose fetus tested positive for a birth defect, one in three
believed she was more or less forced to have an abortion [18].
In another study, more than 50% of professionals involved in decision-making and offering
of genetic tests in 19 countries, 55% of US primary care physicians and 44% of US patients agreed
with the statement “It is socially irresponsible knowingly to bring an infant with a serious genetic

25
disorder into the world in an era of prenatal diagnosis”. The majority of the said professionals in 24
countries and 40% in USA and Canada agreed with the statement “that it is unfair to the child to be
born with a disability” [19].
If the above statements hold true, it follows that it is irresponsible to not provide your child
with a cure. Bioethicist John Harris says [20], “I do not believe there is a difference between
choosing a preimplantation deaf embryo and refusing a cure to a newborn. Nor… an important
difference between refusing a cure and deliberately deafening a child”. He asks, “But {assume}
now a cure for congenital deafness is discovered, it is risk free and there are no side effects. Would
the parents in this case be right to withhold this cure for deafness from their child?”
If parents are obliged to consider the quality of their children and if it is irresponsible to
have a child with a disability [12,19], wouldn’t parents be obliged to add ‘advantageous’ genes to
their children’s genetic make-up? Furthermore, wouldn’t parents be obliged to give their child non-
genetic cures? Wouldn’t deaf parents be obliged to give their children hearing ability through
cochlear implants? [20]. Wouldn’t parents be obliged to give their children (who fit the norm)
genetic and non-genetic enhancements (to better the norm)? Why should only parents with a
‘below the norm’ child be obliged to bring their child ‘up to’ the norm?
1. Wertz, D.C. and J.C. Fletcher. 1998. ‘Ethical and social issues in prenatal sex selection: a
survey of geneticists in 37 nations’ Social Science and Medicine 46(2): 255-273.
http://www.shriver.org/Research/SocialScience/Staff/Wertz/sexselect.htm
2. Sherwin, cited in Wertz, D.C. and J.C. Fletcher. 1997. ‘A Critique of Some Feminist Challenges
to Prenatal Diagnosis’ J. Contemp. Health Law Policy 13(2): 299-345.
http://www.shriver.org/Research/SocialScience/Staff/Wertz/critique.htm
3. Stein, E. 1998. ‘Choosing the sexual orientation of children?’ Bioethics 12(1): 1-24.
4. See ‘Amnesty’s latest fear: how our genes may determine our fate’ The Independent. 18
February 1998, p.19.
5. Wertz, D.C. 2000. ‘Drawing lines for policymakers’, in Parens, E. and A. Asch (eds) Prenatal
Testing and Disability Rights. Washington DC: Georgetown University Press, p.268.
6. See ‘Science and the disadvantaged’ by Wolbring, G. 2000. Edmonds Institute, Edmonds, USA.
ISBN 1-930169-12-4. http://www.edmonds-institute.org/wolbring.html
7. Wolbring, G. 2001. Expert opinion for the Study Commission on the Law and Ethics of Modern
Medicine of the German Bundestag, ‘Folgen der Anwendung genetischer Diagnostik fuer
behinderte Menschen’ (Consequences of the application of genetic diagnostics for disabled
people). http://www.bundestag.de/gremien/medi/medi_gut_wol.pdf
8. From Bob Williamson’s speech at the conference ‘The Pregnant Woman with an Anomalous
Fetus; Is Current Management Ethically Based?’ Melbourne, Australia. 13 February 1998.
9. European Commission: The Ethical Aspects of Prenatal Diagnosis. Opinion of the Group of
Advisers on the Ethical Implications of Biotechnology, Brussels. 1996.
10. Asch and Parens Hastings Center. Sept/Oct 1999. Special Supplement S1-S25.
11. Singer, P. 1994. Rethinking Life and Death. Oxford: Oxford University Press.
12. Rogers, L. 1999. ‘Having disabled babies will be ‘sin’, says scientist’.
http://www.sunday-times.co.uk/news/pages/sti/99/07/04/stinwenws02034.html?999
13. Blumenfeld, Z., I. Blumenfeld and M. Bronshtein. 1996. ‘The cleft palate’. Craniofacial Journal
36(2): 105-107.
14. Dept. of Health (UK). 1994. ‘Health and Personal social service statistics for England 1994’.
London HMSO, Table 4.3: 24.
15. Stoll C. et al. 2001. ‘Evaluation of prenatal diagnosis of associated congenital heart diseases by
fetal ultrasonographic examination in Europe’ Prenat. Diagn. 21: 243-252.
16. Societal Implications of Nanoscience and Nanotechnology. NSF Report, March 2001, p.41.
http://www.wtec.org/loyola/nano/societalimpact/nanosi.pdf
17. http://www.aleph.se/Trans/
18. Glover, N.M. and S.J. Glover. 1996. ‘Ethical and legal issues regarding elective abortion of
fetuses with Down Syndrome’ Mental Retardation 34: 4,207–21
19. Wertz, D.C. 1998. ‘Eugenics is Alive and Well’ Science in Context 11(3-4): 493-510.
20. Harris, J. 2000. J. of Medical Ethics 26: 95-100.

Dr. Gregor Wolbring is Biochemist at the University of Calgary and Adjunct Assistant Professor
for bioethical issues in the Dept. of Community Rehabilitation and Disability Studies. He is Founder
and Coordinator of the International Network on Bioethics and Disability, which examines how
issues such as biotechnology, nanotechnology and euthanasia affect marginalized groups. To

26
subscribe, go to www.yahoogroups/subscribe/Bioethics or send a blank e-mail to
bioethics-subscribe@yahoogroups.com, webpage: http://www.thalidomide.ca/gwolbring

The National Health Crisis and ‘Health Genomics’

Continuing crisis in the National Health Service in Britain has been hitting the headlines almost
daily. The nation desperately needs to invest in research that can improve the health of its citizens.
But research funds are being swallowed up by ‘health genomics’, research that could do little else
for people’s health than to enable pharmaceutical companies to further drain the NHS in expensive
patented diagnostics, drugs and therapies. Sam Burcher and Mae-Wan Ho report.
The crisis in Britain’s National Health Service (NHS) has been deepening for the past decade (Box
1). The NHS was given 9% more cash in 2001. The annual budget for 1999-2004 is to rise from
£49.3bn to £78.7bn. But sixty percent of the increase has already been spent with little sign of
improvement [1]. The NHS waiting list rose from an average of 1.045 million during the last Tory
administration to 1.114 million under Labour, a 6% increase. The waiting list to see a consultant is
up 68% from 238 000 to 401 000. The government is exporting patients abroad for treatment, after
forbidding the practice for years.
Disturbingly, old people are half as likely to receive treatment as the young, they are more
likely to be left to die. Treatment for other groups are at the mercy of ‘postal code’ lottery, ie
depending on where they happen to live. Hospital acquired infections are at an all time high of 100
000 per year, and 5000 die. Casualty waits in the emergency wards exceed 24 hours. There is
mass exodus of nurses from the NHS, already severely understaffed.
The Chancellor was forced to announce another billion for the NHS and hinted at tax
increases to come. That brings a total of 6 billion extra just for 2002, an increase of 7%. But this will
be another drop in an ever-expanding ocean. While the average European country spends 9% of
their Gross Domestic Product on health, Britain will reach 7.6% only by 2004 [2].
Chronic under-funding is compounded by mounting costs of medical equipment and drugs,
rising faster than inflation and yielding record profits for the pharmaceutical industry. The
pharmaceutical’s average 18.9% profit-to-revenue ratio was, by far, the highest of any industry in
the United States (Box 2). Britain’s pharmaceutical industry is second only to the US.
It is not only the lack of funds, but “chaos from top down”, mismanagement and lack of
forward planning.
The lack of forward planning in national health is nowhere more evident than in the
persistent under-investment in research that promotes health instead of reinforcing illness.
Mainstream research has focussed disproportionately on diagnosing diseases and developing
expensive treatments and drugs that allows the profit-hungry pharmaceutical industry to drain the
nation’s health and life blood like a vampire.
Drugs are being regularly overused and abused in industrialised countries with disastrous
effects. Successive studies have documented a rising epidemic of iatrogenic diseases, ie, diseases
caused by medical treatments, interventions and drugs. By 2000, doctors became the third leading
cause of death in the US killing 250 000 every year, among which are 106 000 from non-error
negative effects of drugs [3]. The latest statistics show that older people in care are given four
times as many prescription drugs in Britain, and deaths caused by prescription drugs have gone up
five fold in the last ten years (Box 3).
The current massive investment into ‘health genomics’ and related research is explicitly
aimed at identifying the maximum possible number of expensive patented gene drugs and
treatments. It has contributed almost nothing to the health of the nation, and is unlikely to [4]. On
the contrary, it is taking resources away from other approaches that can deliver genuine health to
the poor as well as the rich.
A major pressure on the NHS is an increasingly aged and sickly population. Two thirds of
the NHS resources currently go to caring for the aged, and the pressure will grow as people live
longer. Yet, there is a distinct lack of research funding into aging [5]. Similarly, despite the growing
popularity of complementary or alternative medicine (CAM), there is almost no support for research
in that area (Box 4).
More important than documenting the clinical efficacy of CAM is to support research into
holistic models of health, and the development of non-invasive diagnostics and effective treatments
based on minimum intervention. The rising epidemic of iatrogenic diseases is a sign that the
reductionist model that informs conventional western medicine is failing under its own weight of
maximising intervention, side-effects and costs [6]. At the same time, there is an urgent need to
recover and revitalise indigenous herbal medicines and health systems before they are driven to
extinction by the dominant, market-driven model.

27
 Indeed, our health policy makers may have something to learn from countries like Cuba
that has managed to deliver health at less than one-hundredth of what it costs us in Britain (Box 5).
Equality in access to primary care and prevention are some of the key features, not expensive
drugs and treatments.
1. “Extra cash for NHS has had ‘limited effect’” by Andrew Grice, The Independent, 27
November 2001.
2. “£27bn black hole in labour plans” by Larry Elliot, Michael White and Charlotte Denny, The
Guardian 29 November 2001.
3. Starfield, B. (2000). Is US health really the best in the world? Journal American Medical
Association 284, 483-5.
4. See “Genomics for health?” and “Human DNA Biobank worthless” by Mae-Wan Ho and Nick
Papadimitriou, ISIS Reports Jan. 2002.
5. “Same old story” Editorial, Research Fortnight, 21 November 2001.
6. See “Human genome is a big white elephant” by Mae-Wan Ho, ISIS News 9/10, July 2001
ISSN: 1474-1547 (print) ISSN: 1474-1814 (online)

Box 1
Britain’s collapsing National Health Service
Old patients left to die
Analysis of12,000 case-studies in twenty Scottish hospitals revealed that younger patients are
twice as likely to receive the best available treatments, while some older patients are left to die.1 A
study compared 30 year-old with 70 year-old patients admitted to Accident & Emergency, and
found that the 70 year-old is 26% less likely to be admitted to intensive care and 35% less likely to
be sent to the resuscitation room. The 70 year-old patient with the same head injury as a 30-year-
old is 50% less likely to be sent to the neurological surgery ward.2
Hospital acquired Infections kill up to 5,000 patients in England per year
These infections are caused by breaking simple hygiene rules such as hand washing between the
treatment of patients.3 Susceptible patients with impaired immune systems fall prey to a rapid
spread of pathogens, and with few isolated single bed wards, infections multiply. Methicillin
Resistant Staphylococcus aureas is particularly virulent. Estimates suggest that at least 100,000
cases of hospital acquired infections are reported each year.
Casualty wait exceeds 24 hours
A spot check of hospital casualty departments by a community watchdog found at least 20 patients
exposed to “unacceptable” waits of 24 hours or more.4 A 93-year-old woman with hypothermia was
delayed in Accident & Emergency for 30 hours before being admitted to the ward. And a 41-year-
old female spent 54 hours in the casualty department awaiting investigations.
Waiting lists increase
Waiting lists are described as “inhuman, insane, uncivilised and cruel” by a leading orthopaedic
surgeon whose elderly patient waited six years for a knee operation. A leaked National Audit
report found hospitals manipulating patient data to give the appearance of shorter waiting lists.5
And 1 in 5 patients are incorrectly suspended from waiting list to meet waiting list targets rather
than medical needs. This has forced one man to sell his share of the family home to finance a trip
to Cape Town for a heart operation.
NHS exports British patients
Thousands of waiting list patients are to be sent abroad for operations. The health secretary Alan
Milburn has scrapped any regulations under the 1977 Health Act that denies treatment to UK
citizens abroad.6 A scheme (E112) already exists where, under exceptional circumstances, UK
passport holders can obtain medical care abroad, and it has been operative since 1973. The new
scheme, fully fledged by 2002, will allow groups of patients to go abroad for operations rather than
having them in the UK.
Mass exodus of nurses
The shortage of nurses has led the government to take drastic action. They are setting up their
own NHS staff agency in a bid to compete with private agencies.7 Annual national costs of agency
and temporary nursing run at £810 million. In the capital, 22 hospitals have got together to cap
commissions charged by agencies by agreeing to use only those from an approved list. However
these rates lure NHS nurses into agency work. Remuneration for the same service in the same
hospital is £22 per hour for the agency nurse and £12 for the NHS nurse.
Chaos from top down
An eminent consultant who worked within the NHS for 31 years has launched a searing attack on
“dishonest” politicians for making doctors the fall guys for lack of planning and resources. Dr

28
Michael Gross, pioneer of a migraine treatment and retired chairman of Neurosciences at Royal
Surrey County Hospital said the NHS was “in chaos from top to bottom”.8 Under-funding has
“forced doctors and nurses to make choices as to who will receive how much care as opposed to
everyone receiving what they need.” He left the NHS when his hospital closed its neurological
department abandoning a vast list of patients to no local care. He now works privately as
consultant and for a neurological charity.
1. Help the Aged News Release 15th December 2000. www.helptheaged.org.uk/news
2. Browne A. The Future of the NHS: “Survey indicts ageist NHS”. Sunday August 13, 2000.
The Observer.
3. Pittet D. et al. Effectiveness of a hospital-wide programme to improve compliance with hand
hygeine. Lancet 2000 356:1307-1312.
4. Carvel J. “54-hour wait tops casualty survey.” Thursday March 29 2001. Guardian
Newspapers Limited 2001.
5. Frazer L. Petre J. “How hospital managers fix waiting list for ministers.” Telegraph UK 29th
July 2001.
6. “Government denies exporting NHS patients.” Thursday Oct 4 2001 Society Guardian.co.uk.
Guardian Newspapers Limited 2001.
7. Morris Z. Frith M. “Why it pays nurses to leave the NHS.” Thursday 1 November 2001.
London Evening Standard.
8. Hall C. “Neurologist quits over chaos and dishonesty.” 5th July 2001. Telegraph Group Limited
2001.

Box 2
Pharmaceutical profits top the league
The top seven pharmaceutical companies took in more profit by a wide margin than the top seven
auto companies, the top seven oil companies, the top seven airline companies, and the top seven
media companies.
One drug company, Merck, pocketed more in pure profit than all of the airline companies in
the world’s 500 largest corporations, and bested the entertainment and construction industries as
well. Most significantly, the pharmaceutical’s average 18.9% profit-to-revenue ratio was, by far, the
highest margin of any industry in the nation.
The 1999 revenues in millions and profits as percentage of revenue for some of the big
drug companies are as follows Merck $32 714 (18%), Novartis $32 465 (21%) BMS $20 222
(20%), Glaxo Wellcome $14 133 (19%), Abbott $13 178 (27%), Warner-Lambert $12 929 (23%)
SmithCline $12 622 (11%), Eli Lilly $10 003 (33%).
Sources: “New figures prove pharmaceutical industry continues to fleece Americans” by
Congressman Bernard Sanders, Washington DC
http://www.bernie.house.gov/prescriptions/profits/asp; Pharmaceutical company profits and salaries
by Richard Laing, Dept. of International Health, School of Public Health, Boston University,
presented at Durban South Africa AIDS Conference 11 July 2000 www.actupny.org

Box 3
Drugging us to death
A report released by Liberal Democrat Member of Parliament in December 2001 reveals how older
people in care are given four times as many prescription items as a person living in their home.
Anti-psychotic drugs in nursing and residential homes are vital against schizophrenia and other
forms of severe mental illness in about one in 10 residents. But research both in Britain and
overseas suggests another 2 out of 10 are given the drugs for no medical reasons. Thus, as many
as 35 000 in nursing homes and 53 500 in residential homes are being inappropriately treated.
Worse, the side-effects - constipation, dizziness, drowsiness, fainting – may help lead to
misdiagnosis of real health problems, and even to death.
In the same month, the National Audit Office documented a five-fold increase in deaths
due to prescription drugs over the past ten years, from 250 to 1200.
Sources: “Going quietly” by James Meikle, Guardian G2, 5 December 2001.“Today programme”,
BBC Radio 4, 17 December, 2001.

29
Box 3
Investment urgently needed for holistic health and complementary medicine
A report by The House of Lords Select Committee on Science and Technology last year highlighted
an urgent need for more research into complementary and alternative medicine (CAM). Consumers
spend £1.6 billion a year on CAM. The medical establishment calls for more proof that alternative
therapies work, but funding in the UK for research into complementary medicine, notably in
comparison with such funding in the US, is pitiful.
CAM has been growing in popularity throughout the 1990s. By 1997, U.S. consumers
spent more than $27 billion in out-of-pocket expenses on CAM and made more than 629 million
visits to alternative providers, almost double the 386 million visits to primary care physicians during
the same period.
The first major response to the need for more research by the federal government in US
occurred in 1992, when Congress set up the Office of Alternative Medicine (OAM) as a division of
the National Institutes of Health. It was designed with three goals in mind: establishing an
emphasis of rigorous scientific testing of CAM treatments; developing an infrastructure to
coordinate and conduct research; and establishing a clearinghouse to deliver information to the
public.
Since the OAM’s inception, funding into CAM research has risen significantly, from just $2
million in the first year, to approximately $50 million in 1999 and $68 million in 2000. This jumped to
$89.2 million - an increase of over $20 million in 2001.
In Britain, less than 8p out of every £100 of NHS funds for medical research were spent on
complementary medicine. In 1998-99 the Medical Research Council spent no money on it at all,
and in 1999 only 0.05% of the total research budget of UK medical charities went to this area. The
Arthritis Research Campaign is one of few such organisations to take account of the huge rise in
the numbers of people using non-conventional therapies. It has announced funding into
complementary and alternative therapies, beginning with a two-year clinical trial into the effects of
acupuncture on patients with osteoarthritis of the knee.
Sources: “Complementary and alternative medicine needs - and deserves - more research” by The
Prince of Wales, The Times, December 30, 2000.
House of Lords Science and Technology – sixth Report, Session 1999-2000, Publications on the
Internet, Science and Technology Publications
“Congress increases funding for CAM research by $20 million. Acupuncture Today
(Editorial@AcupunctureToday.com)

Box 4
Cuba delivers superior national health at less than one-hundredth the cost
Officials from the Department of Health and 100 GPs visited Cuba not so long ago to see how that
country delivers health care at a fraction of our cost. Despite political struggles and trade
embargoes, excellent healthcare is provided at £7.00 per head. UK healthcare costs £750 per
head. Cuban family doctors are plentiful and have a higher training standard than our GPs with a
ratio 1 doctor to 500-700 people. No one lives more than 20 minutes from a “consultorio”, a three
storey building houses a medical practice on the ground floor, the doctor’s flat on the first floor and
the nurses flat on the second floor. Cuba has 21 medical schools and 37,000 practice nurses,
30,000 GP’s and a population a fifth the size of UK. In the UK, the ratio is one doctor to 1800-2000
patients, and there are10,300 nurses, 30,000 GPs and 12 medical schools.
Source: Boseley S. “Cubans tell NHS the secret of £7 a head healthcare.” The Guardian Monday
October 2nd 2000. Guardian Newspapers Limited 2001.

(Presented at World Social Forum, Porto Alegre, Rio Grande do Sul, Brasil, Feb. 3, 2002)
Gene Medicines, Corporate Genocide, and How to Beat Them
Mae-Wan Ho
‘Gene medicines’ are drugs and therapies based on genetic engineering, genomic information,
or the new reproductive technologies. ‘Corporate genocide’ is no ordinary genocide. It is not
aimed at any particular ethnic group but at all of us. In the first instance, gene medicines are
dangerous, and will cull the most vulnerable on the basis of our genetic makeup and otherwise.
Genocide is fundamentally involved in the assumption that particular gene variants are
undesirable. As every human condition is being reduced to ‘predisposing’ genes, it opens the
way to eugenic elimination of those perceived to be genetically defective and selection of those
considered genetically most fit.

30
 In the last analysis, corporate genocide is aimed against the poor and the politically
dispossessed. A band of scientists and ‘bioethicists’ are promoting human germline genetic
modification and genetic enhancement. They see the creation of a gene-rich class of human
beings to be inevitable in the free play of the global marketplace. The rich will pay to genetically
enhance their offspring in the same way that they will pay for expensive private education.
Consequently, there will be a genetic underclass - children of the poor - that will eventually
become a separate, inferior species. Social inequity will thereby become translated into genetic
inequity and genetic apartheid; and vice versa. There have been suggestions that social class,
too, is genetically determined.
I am going to paint a broad canvas of how gene medicines are a threat to health and the
social fabric of civil society, so that we can see how best to beat them.

First, Save Our Scientists (SOS)

There’s one thing worse than corporations taking over the world. That’s our government
negotiating away people’s rights to livelihood and self-determination at the World Trade
Organisation, while awarding huge subsidies to the corporations at our expense.
But there is one thing worse even than that. It is when the intellectual elite that we trust,
instead of warning us of what’s happening, are doing its best to serve the corporate agenda. For
years, universities have been turning out students that are, as one young Thai graduate puts it,
“salespersons” for the agrochemical and the drug industries.
Nowadays, it is not unusual for biomedical researchers to unashamedly peddle ‘snake-oil’,
in a manner of speaking. Every gene identified is going to be a miracle cure, for cancer, heart
disease, or better yet, obesity. Some have been caught killing patients with fraudulent drugs while
profiting from stock market hype of ‘spin-off companies’ created at public expense. Independent
science and scientists are in danger of going extinct. The pursuit of knowledge for its own sake, or
in the public interest, are both things of the past.
Last year, British physicians proposed a national panel to handle investigations of
misconduct in biomedical research. The top biomedical journals joined up to insist on scientific
independence, almost as a counsel of despair, because no other institutions will do so.
An Editorial in The Lancet states,
“Governments, nationally and regionally, have consistently failed to put their people
before profit. By contrast, academic institutions could intervene to support scientists when
financial conflicts threaten to do harm. But these institutions have become businesses in their
own right, seeking to commercialise for themselves research discoveries rather than preserve
their independent scholarly status.”
Instead of protecting the endangered species and fostering open debate on matters
ranging from declining academic standards to the safety of GM foods and medicine, academic
institutions are actively persecuting independent scientists and hounding them out (see ISIS
News 11/12, October 2001 www.i-sis.org).
To counter that, we need to influence science research policy, we need to recapture
public finance for research that genuinely serves public interests, and insist on protecting the
independence of science and scientists.

Gene medicines worse than bioweapons

Biological weapons have been very much in the news since the anthrax attacks in the United
States. With genetic engineering, new pathogens that escape detection, and for which there is no
defence, can be readily created in small facilities. The basic tools and materials for making bio-
weapons are the same as those used in ‘legitimate’ genetic engineering applications. But while
bio-weapons are made under strictly contained conditions, many dangerous experiments are
being done without adequate safety precautions, and hazardous gene products are released into
the environment as if they were safe.
Some of us have been warning about the inherent danger of genetic engineering for years.
It was highlighted by a report of an experiment last January, in which genetic engineers
‘accidentally’ turned a harmless mousepox virus into a deadly pathogen that killed every one of its
victims.
That was just the tip of the iceberg. Lethal viruses have been created in genetic
engineering experiments for the past thirty years, with little or no comment from the scientists
concerned. Recent examples include a mutant Ebola virus more lethal than the natural virus, and a
hybrid between the human and monkey AIDS virus that kills rhesus macaques in weeks.

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 New vaccines are something to watch out for. Many vaccines against AIDS are
effectively slow-acting bio-weapons, as a number of virologists have pointed out. The
vaccines compromise the immune system, and have the potential to create new, deadly
viruses and bacteria. Yet, they are undergoing mass clinical trials around the world,
especially in vulnerable populations in developing countries.
So-called gene therapy has helped no one. Instead, the most common gene therapy
vector, made from the adenovirus, causes toxic shock as well as cancer. It killed teenager
Gelsinger in a clinical trial three years ago. A US federal investigation on gene therapy trials
uncovered more than 650 adverse events and eight deaths. But clinical trials resumed, and the
same vector is still in use.
Xenotransplantation – the transplant of animal organs and cells into humans – is widely
recognized as hazardous. Problems of acute and chronic immune rejection are insurmoutable. And
animal viruses can cross from animal organs and cells to the human host, to infect the population
at large. Hundreds of adverse events and at least 24 deaths have been linked to
xenotransplantation since 1992. The Campaign for Responsible Transplantation (CRT),
representing 90 public interest bodies, started legal proceedings against the US Food and Drug
Administration for withholding the information from the public.
We must make sure that both genetic engineering and bio-weapons come under peaceful
international control. Tell your governments to sign onto both the Biological Weapons Convention
and the Cartegena Biosafety Protocol. And stop those dangerous experiments at source by telling
the scientists they don’t have a right to do research that are not only useless, but also dangerous.

Human Farm Incorporated

The public media have been preoccupied with pseudo-scientists threatening to clone human
beings. But that is a smokescreen. Behind the scenes, key scientists are quietly leading us to the
brave new world of human farming under the mistaken assumption that scientific research is
sacrosanct, and it would be a sin to ‘stop science in its tracks’.
These scientists are expressing horror at reproductive human cloning, the process that
produced Dolly the sheep, in which the nucleus of the egg is plucked out and discarded, to be
replaced by a nucleus from a cell of the donor who is to be cloned. The egg with the transplant
nucleus is then allowed to develop into an embryo. The chance of success is extremely low. The
cloned animals are ‘a gallery of horrors’, according to the scientists themselves. Dolly has come
down with arthritis at the tender age of 5.
However, the scientists are insisting that research on so called ‘therapeutic’ human cloning
must be allowed. What this means in practice, is that, instead of the embryo developing into a
baby, it is destroyed at an early stage to provide stem cells. Why? Because stem cells retain their
ability to multiply indefinitely and differentiate into practically all cell types of the body, and can
therefore be used in transplants to replace damaged tissues.
Human embryos, empty eggs, and women providing the eggs are turned into commercial
commodities and nothing else. The women are subject to a regimen of tests and hormone
treatment, and it can be predicted that the poor will be the first to volunteer to sell their eggs.
There is widespread opposition to this technology, which is a prime example of how market
considerations are distorting research priorities and taking it in a direction counter to both the moral
concerns of society and the good of patients.
It so happens that stem cells are also present in adults, a discovery whose significance
rivals that of DNA as the genetic material. They can easily be collected without destroying or
unduly harming the subject, from blood, bone marrow and skin. And contrary to the impression
created by those who insist on researching embryonic stem cells, adult stem cells are
developmentally just as flexible as embryonic stem cells, and can also be propagated indefinitely in
culture, if necessary. While embryonic stem cells carry risks of cancer and uncontrollable growth
and differentiation, adult stem cells already have a record of safe and effective therapy.
Bone marrow cells taken from the patient have successfully mended the patient’s own
damaged heart, treated cancers and autoimmune disorders. These treatments do not require
immune-suppressive drugs or cell cultures. And there is nothing to stop researchers from further
simplifications in which stem cells are not taken out at all, but encouraged to replace damaged
tissues within the body itself.
In contrast, embryonic stem cells must be harvested from human embryos and expanded
in culture to obtain established cell lines. A regimen of immune suppressive drugs must accompany
the transplant; unless the cells are derived from embryos created by somatic cell nuclear transplant
from the patient’s own cells. The cell-lines, culture methods and drugs, all patented, each involves

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a separate risk to the patient. But, it also yields maximum profit. And as far as I can see, this may
be the only reason for continuing this line of research.
And if we let the market decide, see what’s coming next.
Researchers have recently isolated male germ-line stem cells from the testes of mice, and
genetically modified them. The genetically modified stem cells were then injected into the testes of
infertile mice, which the cells successfully colonized and matured into sperms.
The ease with which the genetic modification has been achieved suggests this may
become the method of choice for making transgenic animals in future, including human beings.
Further, the ease with which the testis of infertile mice could be colonized by male germ-line stem
cells opens the door to corporate control of male reproduction.
Surrogate human sperm-carriers and propagators are now on the horizon. Some dictator
or industrial tycoon might want his germ-line propagated and multiplied indefinitely as a way of
gaining immortality. A horde of sterile males will be recruited, or worse, created by genetic
engineering, so their testes could be colonized. They would join the female providers of ‘empty
eggs’. Both might have to be locked up in germ-free environments for the short duration of their
vegetative existence.
Unless of course, we challenge the right of scientists to research on human embryonic
stem cells and human gene therapy. In the mean time, we should regain control of reproduction
from the experts. Women in both developed and developing countries are insisting on their right to
natural childbirth and access to their traditional midwives, many of whom are suffering persecution
from the western medical establishment (See “Hold onto Midwife, Here comes the Doctor”, ISIS
News 11/12).

Health genomics a contradiction in terms

The human genome map has cost the public billions, Thousands of scientists from 6 countries
worked for ten years, only to be overtaken by Craig Venter’s private company Celera. Venter
finished equal in the human genome race, and burst the bubble by telling the world that there are
too few genes to support the notion that we are genetically hardwired. The investment companies
were quick to see the implication, as the myth of genetic determinism can no longer be sustained.
Prospects for genomics – information gathering around genomes, genes and proteins – look
bleaker than ever before.
Instead of cutting the losses and retreating, proponents redouble their efforts to keep up
the hype, our governments are throwing even more billions of our tax money to bail out another
ailing industry, and are pushing genomics to developing countries.
The American Museum of Natural History put on a lavish exhibition last year, claiming that,
“By the year 2020, it is highly possible that the average human life span will be increased by 50
percent; gene therapy will make most common surgery of today obsolete; and we will be able to
genetically enhance our capacity for memory”.
Towards this future vision, the British government, following the lead of Iceland, intends to
set up a human DNA Biobank collection, to identify gene variants that make us susceptible to
common diseases and offer us ‘personalised’ medicine based on our genetic makeup, among other
things.
But this is bound to fail, for the reasons that Craig Venter has already stated. One simply
“cannot define the function of genes without defining the influence of the environment”. Also, the
genes interact, ultimately with all the other genes in the genome. Even for the classical single gene
disorders such as cystic fibrosis and thalassemia, which can be attributed to mutations in one or a
few genes, the influence of other genes and the environment is such that it is impossible to give
accurate prognosis for individuals.
We already know that for the vast majority of diseases, environmental variables – such as
hygiene and living conditions, exposure to toxic substances, social class, diet and other ‘lifestyle’
habits – can all significantly affect disease and disease progression across all ethnic groups and
major genetic differences. Environmental variables will almost certainly swamp the effects of
‘susceptibility’ or ‘predisposing’ genes.
Thus, mutations in several putative genes for Parkinson’s disease have been identified
since 1997. But subsequence screening has failed to confirm those findings. A study on nearly 20
000 twins who were world war II veterans found little difference between monozygotic twins who
have all their genes in common, and dizygotic twins, with only half of them in common. In other
words, there was “no genetic component” for the typical disease that begins after age 50. Only in a
rare form of the disease that strikes at or before age 50 was there evidence of a genetic cause.

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 ‘Susceptibility’ is by definition, weak linkage, and can never give firm predictions.
Moreover, it describes the population attribute of certain gene variants, and says nothing at all
about the susceptibility of individual human beings. Thus, personalized medicine is scientific
nonsense at best.
Instead of delivering “healthcare in the new millennium”, it is intended more towards
delivering patients to the health market dominated by the drug industry. Chief executive officers
and scientists of drug corporations are questioning whether genomics can even deliver new drugs
at all.
Health genomics is a huge investment both in finance and scientific input. Not only will it
fail to yield the expected returns in profit or health improvement, it will worsen the public health
crisis in Britain as in the rest of the world, by foreclosing promising approaches that can truly
improve the health of nations. Most of all, it provokes the re-emergence of genetic discrimination
and eugenics, harming those most in need of care and treatment. Those perceived to be ‘disabled’
or ‘defective’ are being treated as objects, and denied a voice.
Corporate market-dominated biomedical research is the greatest threat to health. Don’t let
our governments squander any more national resources in health genomics and other research
that maximize intervention, cost and risks. Instead, support research and development of holistic
health models and effective treatments that minimize intervention, side-effects, and cost. Above all,
major efforts must be directed towards revitalizing indigenous health systems and protecting them
from corporate biopiracy.

Conclusion
In conclusion, let me reiterate how to beat gene medicines and corporate genocide

Save our scientists

• Influence science research policy
• Recapture public finance for research that serves public interest
• Insist on independence of science & scientists

Acknowledge that gene medicines may be worse than bioweapons

• Genetic engineering and bioweapons must both come under peaceful international control
• Governments should sign onto both the Biological Weapons convention and the Cartegena
Biosafety Protocol
• Scientists should stop doing useless, dangerous research

Beware of Human Farm Incorporated

• Scientists’ right to research on embryonic tem cells and human gene therapy must be
challenged
• Regain control of reproduction

Reject Health Genomics as a contradiction in terms

• No more national resources to be squandered on genomics and related research that
maximize intervention, cost and risks
• Support research and development of holistic health models and effective treatments that
minimise intervention, side effects and cost
• Shift emphasis away from cure to prevention towards equitable provision of primary health care
for all
• Reject patenting of gene and gene medicines
• Revitalise indigenous health systems and protect them from corporate biopiracy.

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