FACTS againest MYTHS V0L-VII-3-2001.pdf
Media
- extracted text
-
Colonising the Web of Life:
The Myths of the Human Genome Project (HGP)
COMMENT
rior to the 15th century, Europe imported manufactured goods and spices from Asia. Lacking in goods to
export against these imports, the balance of trade was not a favourable one. To overcome it, Europe
began to explore sea-routes around the world and thus began the so-called The Age of Great Adventure’.
In reality, however, it was the Age of Colonial Plunder, the Age of Christopher Columbus—the first white
man who "discovered” America - and Vasco da Gama. Along with weapons and food supplies each
carried a Papal Bull allowing them to claim whatever lands they found in the name of Catholic Spain or
Catholic Portugal. The world was carefully divided between the two. The Decree allowing them to claim
such lands were known as “terra nullus”. Irrespective of the indigenous peoples they found living there,
these lands were officially declared “barren”. Since then, the commercial enterprises (TNCs today) have
repatriated and amassed enormous wealth and power, discarding responsibility for several hundred years
and continuing to practice the colonialism on which they were based. Today, the doctrine has been
resurrected in its new ‘avatar* and directed, not at distant lands, but at life itself. They have found rich new
worlds to plunder: the genetic wealth of diverse species, the work of farmers and indigenous people and
the intellectual wealth that they have accumulated and handed down over millennia. Thus, more than 500
years after Christopher Columbus “discovered” a world new to him, people continue to have a problem
with explorers. In addition, just as
before, the explorers (TNCs) today
are trying to stake a claim this time
through gene technology and
patenting. The former is based on
two broad assumptions: that genes
are the major determinant of the
development of an organism; and
those particular genes can be
equated
with
particular
characteristics. Patenting on the
other hand enables TNCs deploying
this technology to guarantee that
it works solely for their benefit. Its
proponents maintain that the
patenting of genes, particularly
from certain rare species of plants
and animals is justified for the
‘greater human good.’
P
FACTS against MYTHS
2
Q FOR PRIVATE CIRCULATION ONLY
ga> H=s> BM MH rasa t=a eot mb wa rot mo br r=i
I
I
I
I
I
I
I
I
8
I
8
I
8
I
I
I
I
8
8
I
I
I
I
I
I
1
I
I
I
i
I
I
J
rot rot rot bbb bm
oth
iraa
5=1 sew
ess* jesh isjm
ms r-.~a asa aces hot itjj
Colonial Plunder
he voyage of Columbus to the New World marked the beginning of the so-called ‘Colombian
Exchange’ that brought in maize from South and Central America and later other crops to
Europe, all under colonial control. Rubber was smuggled out of Brazil to Kew Gardens, London.
From there it was taken to the botanical gardens of Singapore where it was distributed to
launch the rubber industry of SE Asia where the rubber boom caused a rubber bust in Brazil
and the deaths of hundreds of thousands of people. In ‘exchange’, sugarcane travelled from
S. E. Asia to the New World, where systems of human slavery were instituted to tend the cane.
The boom-bust-famine cycles of sugar production are well known. Coffee came from Africa
and Arabia, bananas from S. E. Asia.
T
Colonial powers attempted to control biological materials through control of production. The
Dutch limited production of cloves and nutmeg to three islands in the Moluccas (Indonesia).
The French brandished the threat of the guillotine at anyone who dared to take indigo off
Antigua in the West Indies.
Explorers were not simply looking for gold and silver. They had their eyes on plants. By the
18th c. 9,000 plants were introduced into England that formed the basis of the European dye,
chemical and drug industries. These made possible the plantation economies in the South
that brought tremendous wealth to Europe. For the most part the search for plants was a
search for new and valuable species of plants. This great robbery in a way made possible the
industrial revolutions, capitalism, ‘development’, and ‘advancement’ of Europe.
With the rise of plant breeding techniques the importance of botanical gardens, as a source of
agricultural inputs declined. The US built a system of plant introduction station and finally a
gene bank, the modern-day equivalent of the botanical garden. The Colombian exchange
continued to work. Gene pools still flowed from South to North. Moreover, scientists from the
North freely collected crop varieties from the South. Ninety percent of plant germplasm
collected in the past 30 years have ended up in the gene banks of Europe and North America
yielding billions to the farmers and agri-businesses of these northern countries. However, with
the rise of anti-colonial struggles, new methods of extraction, appropriation and control were
introduced. Old methods of coercion and of physical control of production sites were no longer
viable. Slowly, the idea of plant patents was broached after the turn of the century. (Patents
are means of allocating ownership, assigning control, regulating access and apportioning
benefits).
(cf: FAM #9,1998)
L——
——_—_—
1
I
I
I
I
1
I
I
I
I
1
I
I
I
I
I
1
I
I
I
b1
I
I
I
I
1
1
1
I
I
I
I
J
The study and mapping of the human beings was the
next logical step. The rationale was based on the
knowledge, long since known to medical science, viz.,
that there is not just one human genetic map. Each
ethnic community may have a slightly different genetic
composition. Some of the differences and mutations
could someday prove to be invaluable to medicine. From
this understanding emerged the need to map out all
the genes in the human body. The primary task involved
the mammoth assignment of deciphering the
‘instruction books’ (DNA sequences) that make up the
genes in the human body. The whole effort launched in
October 1990 was dubbed the Human Genome Project
(HGB), with US$ 250 m. funding. The Project involved
16 laboratories in 6 countries with the aim of identifying
all the approximately 50,000 genes in humans and also
all the sequences of the 3.1b.chemical bases (units)
that make up the human DNA.
the age-old questions of who we are, why we get sick
and why we get old; the HGP would, in effect,
revolutionise the science of diagnostics and medical
care. It would provide new cures for hitherto incurabl^J
The justification was that it would bring incalculable
benefits to human health. By providing the answers to
The whiff of mega bucks immediately attracted TNCs
to invest into the HGP in a big way. Simultaneously
( FACTS against MYTHS
diseases make medicine truly preventive by removing
the genetic causes of disease and prolong the life span
of human beings to astonishing lengths. An important
impetus to the whole Project emerged from the
realisation that we are living in extraordinary times — a
period when our bio-cultural diversity is rapidly shrinking.
This is more than visible in vanishing cultures,
disappearing languages, and endangered human
habitats. Accordingly, an enormous amount of hype
was generated with world-wide propaganda to make
public the Web of Life written in the alphabet of DNA
comprising of four letters — A, G, C and T (the base
chemical units, adenine, guanine, cytosine and
thymine, which constitute a DNA molecule).
r
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
*1
I
I
I
I
I
I
I
I
I
I
"1
Gene Boutiques!
mong these populations, singled out for genetic study, are: the Hadza (around 200 remain
in Tanzania); the Kung (roughly 15,000 members reside in the Kalahari desert) and certain
Somali communities; the Plains Apache (1,000 remain in Oklahoma), and the Delaware
(numbering around 600); the Akuriyo (about 50 remain in the Amazon), the Yanomami
(approximately 20,000 live along the border of Venezuela and Brazil), and the Dorasque of
Panama (rouhgly 50 remain); the Yukaghir (fewer than 100 live in Siberia) and the Chukchi
(10,000 in the Chukchi peninsula of North-eastern Siberia); and several Onge Greater
Andamanese population (in the Indian Ocean of the Andaman Islands). In India, at least 73
castes, religious and Adivasi groups were considered for intensive study. These are divided
into two communities. One community selected for study is for DNA collection. These include
the Dogras of Jammu; Kulu Rajputs; Ramgarhias of Punjab; Jats of Haryana; Paliwal of
Rajasthan; the pastoral Rabaris of Rajasthan; Lahan-Chake Kumbhar potters of Maharashtra,
the tribal Gawdas of Goa, priestly Namboodris and the Nairs of Kerala, Veilalas and the
traditional Kalans warrior caste of Tamil Nadu; the Kammas of Andhra; land-owing Reddis of
Andhra; Chamar leather workers of UP; the traditional Rastogis scribes of UP; UP Brahmins;
Kayasthas of West Bengal; Thakur landlords of Bihar, Sarguga Brahmans of MP; Agarwals of
M.P; Kalitas cultivators of Assam and Rajbansis of the same state.
A
The other group is singled out for cell-line studies. These include the Kashmiri Pandits; Kiner
Kanets; Sansis of Haryana and Rajasthan; Bhatias of Alwar district of Rajastha; Rajputs of
Jaisalmer; Lohanas migrants from Pakistan; Audich of Gujarat; Chitpavan Barahmans of
Maharastara; Mahars of Nagpur district; Coorgis of Karnataka (to “test the hypothesis of their
Grecian origins”); Iyengars of Tamil Nadu; Cochin Jews; and the Muslim, Hindu and Christian
Siddis of Gujarat, Karnatka and Andhra, among others.
Another category of communities includes what the HGP calls “religious isolates”. These are:
Parsis, Mopla Muslims of the Lakshadweep, Dawoodi Bohra Muslims, Ahmediya Muslims and
the Neo Oswal Jains. Many Adivasis groups - from the Andamans to Himachal, and from
Gujarat to Tripura - are also to be studied. While many of these groups were selected because
of their linguistic and cultural uniqueness, some are also considered to be genetically
distinctive’, that is, scientists have speculated that they probably have genetic compositions
that are slightly different from that of most other humans.
l.
the academia and Universities, scientists, etc., in the
North, also jumped on the HGP bandwagon. HGP
became an informal consortium of international
scientists and universities who aspire to collect
information on human genome variation. Molecular
biologists are into big time, acting as Directors,
Consultants and shareholders in biotech firms that are
seeking to exploit on every aspect of genetic research.
Some of these mega firms include Biogen, Genetech,
Genzyme, Raepligen, NeoRx, and ImClone who have
produced everything from predictive tests to drugs,
hormones, and modified genes.
In its early years of growth the HGP focused narrowly
on Anglo-European populations betraying its
ethnocentric bias. The founders felt the need for a
broader sampling of ethnic populations that would not
only better the Project’s goal to combat common human
disease, but also assist anthropological efforts to
reconstruct the story of human evolution.
In its major undertaking the HGP had planned to obtain
blood, tissue, and hair samples from genetically distinct
populations, many of who are considered ‘endangered’
( FACTS against MYTHS
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
I
J
i.e. populations that may either shortly vanish from the
human family or become genetically assimilated into
other ethnic groups. In October 1992, HGP scientists
identified 722 populations that constitute highly
desirable candidates for genetic study, (see box above)
India, among the countries of the South, is among the
leading countries that has also already invested in
biotechnology under the aegis of the Department of
Biotechnology (DBT) which has since also invested in
the so-called bio-prospecting venture, the Humane
Gnome Project. It established three major centers the PGI (Chandigarh), Guru Nanak Dev University
(Amritsar) and AllMs (New Delhi) -to measure genetic
discoveries. Work is also ongoing in agriculture,
parasite research, etc. Other Indian institutions with
lab and fieldwork facilities include the Indian Statistical
Institute-Calcutta, Department of Human Genetics at
Andhra Pradesh, and centres of human biology at
Punjab University, anthropology at Sagar University,
physical anthropology at S.V. University-Tirupati, and
Guwahati University.
The HGP is no doubt a scientific wonder and the
discovery has been proclaimed the most dramatic
scientific advance since the invention of the wheel. It
could change life more than the wheel did. Not
surprisingly, however, this has raised a number of
disturbing questions around what can and should be
done and who has the means to do it. For TNCs it
means mega business. There is therefore a demand
to limit scientific experiments, for instance, on humans
but the debate conveniently getting focussed on money,
patents, and sharing among the rich North. There is,
also the major concern that scientific breakthrough will
benefit merely the rich North rather than the South
because of their access to new drugs. Thus, apart from
the need to view the whole Project beyond the hype
generated over it there is need to demystify HGP and
also take a closer look at a whole range of privacy and
civil liberties issues linked to it.
MYTH: By enabling scientists to map the entire
human genome, the HGP will revolutionise
healthcare and also help them to diagnose and cure
genetically-based diseases - from sickle-cell
anaemia to manic depression and schizophrenia by replacing bad genes with healthy ones.
FACT: Scientists warn that despite its potential, only
5% of the entire genome is ever expressed i.e. a gene’s
message reaches the end of its one-day journey from
cucleic acid to protein. Nothing is yet known about the
role of the remaining 95% of the genome . Such a
warning means that the routine tests for detecting
predisposition to diseases and other human
characteristics has serious implications for human
health, the legal system, for insurance, for employment
practices, etc. For instance, despite genes being
located for cystic fibroses, muscular dystrophy and
the various cancers, no single therapy has yet been
developed.
On Valentine’s Day 2001 scientists were to announce
with great fanfare the complete human map to the world.
The effort however was a big failure. The ‘Book of Life’
ended up having as few as 30,000 genes! There was
little in the results to justify extravagant claims publicly
trumpeted about this costly project that has cost the
public $3 b. in the US and hundreds of millions of
pounds in the UK.
Beyond the hype, the reality is that if the gene coding,
for instance, for the enzyme monoamine oxidase is
faulty, the individual carrying it may be prone to
violence. But this enzyme is also responsible for
digesting substances found in red wine, cheese and
chocolate. So, there are instances where the presence
of the faulty gene has led, not to violence, but to high
BP, insomnia, agitation on eating certain foods and so
on. It is just that the probability of arson and assault in
such cases is higher. The media often misses this fine
print and reports it as ‘Gene for arson found’ or “Gay
gene discovered”. The same is true for alcoholism.
FACTS against MYTHS
Essentially, all such genetic studies are based on
random sampling and one can talk only probabilistically
about these findings without any degree of certitude.
Similarly the case for schizophrenia - another coin
tossing probability! Genes in some families may like
breast cancer - influence it but not in others; the
environment is also the key. There are cases which
indicate schizophrenia may have a genetic basis. A
small section of the world population has tiny pieces
of chromosome 22 missing. This causes all kinds of
problems —heart diseases, cleft palate, etc. In addition
- it’s a damp-squib probability again—one in 10 among
such people also develops schizophrenia. Screaming
tabloid headlines notwithstanding, the schizophrenia
gene is yet to be discovered.
Another matter of concern is the other serious ethical
dimension of the Project. For instance, the claim that
genes are causes of ailments and can change behavior
begs the question as to what would ‘improving” geneticstock —' micro-eugenics’ - entail? The Madras-based
daily, the Hindu (14-9-1997) had reported that a Swedish
daily from Stockholm,' Dagens Nyheter1 had revealed
that 60,000 Swedes were forced to undergo sterilization £)
between 1935 and the 1970s as they were declared
unfit to procreate. 90% of them were women! Ostensibly,
the aim was to “improve the human race by better
breeding”. This program was based on the pseudo
scientific theory of eugenics widely used by Hitler to
create 'a pure Aryan race". Apart from offering a
panacea for most if not all-human diseases the myth
also offers to unravel the mysteries of human behaviour.
(Cf.FAM,#1,1997)
Today, with “gene technology” also hailed
enthusiastically in India especially by a section of the
ruling elite there is greater cause for concern. “Gene
technology” is being discussed in the traditional
marriage bazaar. Just as IT spawned a new business:
computerized matchmaking (CMM), the advent of
biotechnology with its new bag of tricks, and the
mapping of the human genome, have opened up new
vistas in matching-making. The more the' match-maker* M)
knows about genes of the prospective bride or groom,
the craftier the matchmaker can be in choosing the
'right’ partner, to produce near flawless children, the
major criterion of arranged marriages. Thus, matching
making is in danger of veering into uncharted territory
to say the least.
Above all, genes are important but it is merely half the
story. They define potential. It is the environment that
ensures that potential is fully met.
In conclusion, one of the shocking findings of the
announcement (see above) is that there is no molecular
support for racial distinction among human groups.
Race characteristics are very superficial from the
genetic perspective.
4
MYTH: Individual genes wholly determine our
bodies, behavior and health.
FACT: The announcement (Cf.above) on Valentine’s
Day 2001 saw the collapse of this myth!
Simple physiological facts are for sure the result of
particular genes. However, most behavioral traits and
certain special abilities, if at all they can be determined
genetically, cannot be pinned down to any one gene.
In most instances, complex human traits are the result
of many genes working in tandem. Thus, as Dr. C.
Venter (the US scientist whose private company was
involved in a race with the publicly funded HGP to
sequence the genome) stated, this discovery indicates
that biological determinism cannot be right and that
our enviroment and the way we respond to it is highly
critical. That is, no genes work in isolation, rather they
function in a complex network. External (e.g. social)
and environmental factors have critical role to play in
the human condition. Genes and genomes are also
subject to environmental influence, and are given to
changing and mutating in response to environmental
and external factors.
"MYTH: DNA, blood samples, etc., from rare or
endangered species including humans helps to
identify certain 'disease genes' for diabetes, etc.,
that eventually will lead to a cure which under
existing conditions is impossible.
FACT: Apart from the uncertainties of the whole HGP
there is also the wider concern of a) who owns the
genome project and b) that of patents.
Under the new patent regime HGP is an extremely
sensitive issue today particularly when indigenous
populations, for instance, are involved. It also involves
the issue of privatization vis-a-vis privacy. The genome
project required huge screening of selected populations.
While indigenous populations may represent important
scientific resources for genome researchers, many also
are communities who had been colonised or enslaved,
^displaced from their habitats by so-called Development
^Projects, forced into impoverishment, virtually wiped
out by diseases introduced into their communities by
the erstwhile colonial powers, exploited as cheap labour,
exposed to nuclear weapons testing e.g Netrahat firing
test range in Jharkhand (formerly in Bihar) on their
homelands by governments, and generally
marginalised not only within the global economy but
also within national economies. Already among the
genes and cell lines patented and sold by TNCs 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
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 its own. Thus, given this historical
FA CTS against MYTHS
marginalisation of indigenous populations and its role
in the relationship to the commercialization of DNA by
mega corporations, the HGP is a highly dubious project.
In 1993, the Canada-based international non
governmental organisation, Rural Advancement Fund
International (RAFI), publicly maintained the Project
to be ethically flawed displaying fundamental failures
in comprehending the socio-political environment in
which the Project must perform. In 1997, it urged the
organisers to disband their Project in light of its
consistent failure to respond adequately to the concerns
of indigenous peoples, and because the Project was
impeding dialogue on the broader goal of protecting
human diversity.
MYTH: Genetic-testing technique will protect the
health ofpeople especially the health of employees
in firms, etc., against unnecessary risks e.g.
exposure to radiation and contact with chemicals
and toxic waste to things like noise, stress, etc.
Thus, genetic testing is extremely beneficial for the
workers.
FACT: A hidden agenda lurks behind this myth. The
threat is for the corporate sector and others is to avoid
hiring or employing people with features or traits, etc.,
that (supposedly) disqualifies them for the work.
Genetic tests would be one more in a series of tests
and evaluation used for selecting employees. Moreover,
gene-testing raises the problem related to the methods.
Whether for purposes of security or selection, there is
always a problem with projects of sampling and
registering data of a personal character, Whether it is
done'by way of genetic testing or other means. The
risk is always present that the information, even
through collected for justifiable purpose, is not
sufficiently safeguarded against wrongful use of various
kinds. The more intimate and private this information,
the greater the potential harm to people’s survey.
Assuming the details of the genome of a person were
known, it is then quite easy to predict the person’s
future diseases or health. The person’s privacy, a basic
human right, will be at risk. A company or government
department, for instance, may desire to know the
genetic makeup of its employees to get details of their
health situation. Health nursing companies would also
wish to get details of the genetic makeup of the
applicants. In short, individual privacy is lost. Further,
MNCs dealing in life saving drugs will be least interested
in producing cheap drugs for the poor. Instead, given
their profit motive and according to specific gene-related
diseases they will manufacture very expensive drugs
that only the rich will be able to afford.
It is no doubt true that genetic testing would obviously
be for the benefit of employees with such a genetic
disposition. Therefore, it might appear to be a justifiable
and a viable way for employers complying with their
fundamental responsibility for the wellbeing of the
employees. Logically, it can be assumed that the
employer has already undertaken all possible efforts
5
to make the work place neat, clean and safe as possible
for the protection of the workers, and that the notion of
gene testing is to introduce protection of a secondary
kind. As a means of minimizing the risk to employees
of developing a serious illness, genetic testing would
respond to their basic right to a life without unnecessary
pain and suffering, which underlies the principles of
beneficence.
A major problem in making this testing mandatory as
with AIDS testing for all employees or workers is that
the worker is thus forced to give away information about
his or her genetic structure and dispositions. In all
likelihood this could violate another fundamental interest
and right of the employee. How this can be a violation
of a workers’ right can be spelled out along two lines.
►► The basic right of autonomy (especially formulated
as the right to privacy) includes the right not be
forced to reveal personal and intimate information
about oneself. It is evident that this right could be
overridden if the absence of such information implied
danger or harm to someone else, but that is not
the case here;
>► This Right to Privacy would seem to imply a right
not to be informed about one’s genetic disorders
against one’s own wish, that is, a right to remain
uninformed. A person may well believe that
ignorance about a whether or not s/he carried a
genetic disposition for some ailment like (say)
AIDS makes it more likely that s/he can enjoy a
good life. This right to make this deliberate choice
for ignorance might be undermined by this measure,
for example, if a worker suddenly finds himself or
herself removed from his or her usual job.
Employers’ Responsibility & Workers’ Right
The counter argument that still in the long run the test
will benefit the employee anyway. Thus, in the workers’
long term interest it is necessary to override the persons
autonomy so as to provide the benefit for him or her.
However, assuming that the employees have been fully
and sufficiently informed about the risks and dangers
they may be exposed to at work, as well as well as
about the specific risk to those who carry a special
genetic disorder, there can be no reason to assume
that the employee is incapable of making a reasonable
and right judgement about what is for his or her own
best in this situation. If the employee is completely
aware of the facts and still thinks it for the best not to
reveal or to be informed about his or her genetic status,
there is no justification for forcing a test. To be sure,
an employer is justified in many respects in obliging
workers to comply a with various security measures
without admitting any choice or reservation on the part
of the employee - the wearing of helmets or protective
gear or safety belts for example. Yet, the relevant point
is that such measures do not interfere with the personal
and private sphere in the same way that genetic test
does. They do not breach the right of autonomy.
FXCTS against MYTHS
Incidentally, some 740 patented gene tests are already
in the market, and hundreds more are in the pipeline.
For cases where such tests can help to diagnose and
treat patients, exorbitant license fees have prevented
them being used. On the other hand, healthy people
testing positive are denied employment and health
insurance. Insurance companies in the UK now require
individuals to reveal the results of genetics tests. At
the same time, prenatal and pre-implantation diagnoses
are eliminating human fetuses and embryo-carrying
genes said to predispose them to cancer as a result.
MYTH: The massive investments costs on R&D over
the HGP—to the advancement of science—makes
the patenting ofDNA data absoluteiy essential. After
all, knowledge is the common heritage of
humankind andjustified forgreater common good
as this applied science provides a short cut to new
cures.
FACT: Yet, those who stand to benefit from these
advances - if the historical status quo persists - are
not the indigenous peoples of the South but largely
the rich North. Thus, there is the potential danger of
the peoples of the South especially indigenous!
populations becoming the object of study and collection
and also a target of economic exploitation under the
pretext of advancing science through the strategy of
patents.
However, it is indeed true that prior to the advent of
patents, common ownership of knowledge was the
overriding norm with authentic research and propagation
having stronger roots in sharing than in colonising. A
significant number of researchers do indeed pursue a
cure not for profit. The vast majority of farmers and
agronomists involved in plant and livestock breeding
do so in order to strengthen biodivesity rather than to
weaken it. None presumes to demand lifetime royalties
for the plants or weeds they produce. None so far has
sought to hold the public to ransom for the cures they
discover. No doubt, there is a competitive ness about
medical and agricultural research, but most has been
on professional rather than pecuniary grounds. In fact,!
the vast majority of medical breakthroughs have been
based on remarkable patterns of international
collaboration. First of all, patients and the public have
offered themselves (freely) into research and monitoring
programs. The public had contributed vast amounts of
cash to support medical research - whether directly
into medical charities or indirectly through taxes and
tax concessions. Finally, medical institutions
themselves have shared ideas and information in
pursuit of common cures. The words “patent" and
“license fee" never entered the exchange. Now,
unfortunately, they do. The advent of patents —through
WTO intervention having the power to force countries
to change their laws and their constitutions — the
dynamics have changed for the worse. The reason
being that these institutions favour the protection of
IPRs made by corporately sponsored scientists. GATT
6
MARKETING THE HUMAN GENOME5
Study of GENE is one of the most advanced
branches of science especially biotechnology
Commercial Interest
Study of variations in GENES that determines genetic
Individuality for Various Diseases and Individual
Characteristics
What do these Firms Do?
TNCs institutions, involved in this activity
1.
2.
3.
4.
5.
Decode Genetics Inc. (Iceland)
Hoffman La Roche (Switzerland)
Curagen (US)
Genset (France)
Orchid Biocomputer (US)
1. Create a Massive Database oh
Genealogical family data and medical
records for studying the genetic causes
for common diseases
2. Based on the research, develop drugs
or Diagnostic tests
3. Patent every information on genes
The End Result
All these activities of these firms will convert a
restricted, specialised, sophisticated biotech research
activity into a Major Mainstream Commercial Venture
How?
Only certain companies will have the data monopoly
on Genes and Pharmaceutical companies need these
data to develop drugs and medicines. To gain access
to these data, firms have to pay heavily.
What about ’Donors’ who gave the valuable database?
1. Data is neither available, nor accessible, nor comprehensible
2. They do not know what is being experimented on their genes
Who Gains?
The rich who spends billions of dollars on
0cures” (e.g. treatment for baldness, aging)
Is this Ethically Correct?
FACTS against MYTHS
For This
Commercially interesting and related data
are collected without obtaining consent
from the gullible donors or from their
community or from their government
for instance had produced a chapter on TRIPs which
includes patents. Another instance is Germplasm,
which regarded, as 'the common heritage of mankind’
is therefore patentable. This distinction between IPRs
and common heritage supports a system, which
allows the rich North to extract genetic and organic
raw materials from the poor South and convert them
into highly profitable ventures for sale in the North.
This then raises the other (legitimate) question of
compensations.
With patents under WTO rules for global agreements
hospitals especially government run institutions will
simply be unable to foot the bill. Whether this applies
to genetic discoveries relating to cancer, etc., or
whatever, once patents comes into medical research,
prices race in maximizing profits. The risk is that
new treatments arising from such technologies are
unlikely to improve health prospects. Instead they
will simply, open up another divide between those who
can afford the treatment and those who cannot. For
India and countries the South the health-wealth divide
is even starker under the new WTO patent and
plunders regime. The rules allow for bio-piracy on a
scale unseen for centuries.
is often told that they are making a major contribution
in the advancement of science and to the cause of
humanity. However, they are not necessarily informed
of the commercial dimensions of the Project. As a
result, many indigenous peoples of the South see
themselves as the unwitting subjects of corporate
patent claims. Above all, they maintain that the
design and implementation of a survey of human
genetic diversity must include their full participation.
And, ‘ that means indigenous peoples’ control over
samples after collection and full protection from
patents claims on our tissues there should be no
military access to the samples under any
circumstances...
References:
1.
Noronha, F. First World Scientists on a Dubious Human ’
Gene Trail, TWN Features, Goa.
2.
Ho, M.H., The Death of Genome Map, the Death of
Genetic Determinism and Beyond, Third World
Resurgence, #127-128, Malaysia, 2001.
3.
Mortaensen, V. Life and Death, WCC Publications,
Geneva, 1995.
4.
Simpson, A. Soul Ownership, Resurgence, #188,
London, 1998.
5.
Adapted from The Rally, Chennai, June 2000.
MYTH: Extracting DNA, etc., samples from animal
and human species, etc is neither unethical nor
is it carried out in secret. All such experiments
are conducted under mandatory guidelines of
informed prior-consent
6.
Raghavan, C. Scientific Review Rejects Human
Genome Projects, TWN Features, Goa.
7.
Jones,S., et al. Genetics for Beginners, Icon Books,
London, 1993.
8.
Bhattacharya, P. Human Genome Project,
Philosophical Probing, Kalam, Delhi, July, 2000.
FACT: However, a major lacuna in these guidelines
is jhe total absence of any statements on how the
DNA or a product derived from the endangered species
may become a marketable commodity that could
potentially benefit the private sector or a TNC.
Individuals participating in genetic sampling projects
9.
Ghosh, P. Reading the Book of Life, Outlook, Mumbai,
July 10,2000.
10. Hubbard, R. & Wald, E. Exploding the Gene Myth,
Beacon Press, Boston, 1993.
11.
Das, J., The Book of Life, Debonair, Mumbai, July 26,
2001.
Please feel free to reproduce material from this publication but with due credit.
-———————
i
I
■
I
I
I
I
I
Produced and Published by:
I
Vikas Adhyayan Kendra
I
D-l Shivdham, 62 Link Road,
V
Malad West, Mumbai 400 064, INDIA
I
I
S : 8822850&8898662
Fax: 889 8941
I
Email: vak@bom3.vsnl.net.in
I
Design & Layout: Kartiki Desai
I
I
Printed by : Omega Offset, 4574, Shetty Gaily
I
Bclgaum 590 002. ® 0831-424124 / 433429
I
Facts Against Myths is a monthly bulletin offactual
information on a number ofdevelopment myths and
fallacies, etc, including information against alien
development models, paradigms and false concepts
on caste, creed and gender.
m
!
|
I
“
I
I
■
BOOK-POST
— — — —-I
I
I
I
I
I
I
I
I
I
I
I
I
I
Not viewed