Genetic manipulation: from the The Oncomouse to
humans?
" 1988"the us PTO awards a patent for a transfgenic mouse , a non human animal
genetically modified to carry any oncogène or effective sequence therof" (US patent
N4, 736866)
The oncomouse as you well know is a transgenic animal technology used to create
mice that develop tumors. The finality of such a human creation is curing human.
Varmus both Nobel price and director of the NIH stress that:
“both Cre lox agreements distinguish between products a technology that allows
researchers to remove genes from specific cells and tissues (Nature 394, 98)
and the oncomouse adhere to the NIH principles for sharing research tools. They are
signposts for how similar problems might be solved.
Before the oncomouse agreement, there was no distinction between products such as
enzymes that are consumable and techniques to make “things that replicate”(Nature
January 2000)
Are we all certain of the necessity of animal technology?
Are there ways to regulate ethical issues in animal experimentation and research to
avoid incoherences between ethical priciples and research practice?, the genetic point
of view does allow such an essentialist categorization between the status of the animal
and that of any other animated being, Does it imply a reductionnist a Darwinist view
of global living populations?
The ethical challenges of animal biotechnology more elusively point to living nature
and organic being. As such. Nature and the various values that evolutionary and
ecological contexts are implicated in the question of our appropriate relation to the
animate world.
Animal biotechnology exists within the complex fabric of human relations.
Consider the characteristically human spheres of economic activity , public political
life and the various values animating these domains and you are immediately
confronted to contradictions in using animated beings as things, thus to an ethical
problem.
Transgenic organisms , Science and society
The definition of animal biotechnology is still a controversial issue . A transgenic
organism is one that carrries and expresses genetic information not normally found in
that species of organism. It implies the dissimination of a gene within a species at a
rate much faster than would have occurred in the absence of artificial intervention.
Although organisms with bizarre and unusual phenotypes have been created for
millennia through selective breeding,, modern innovations allow creation of
organisms with genetic capabilities unfound in the so called Nature.
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Transgenic organisms from a utilitarian perspective have great potential for
humankind . These organisms can provide society with novel ways of generating new
products and services of practical value. Transgenic animals and plants can be used as
new commercial products which creates a bizarre category in between animate and
inanimate;. Things and living beings.
These products allow researchers to design laboratory organisms that mimic human
diseases such as cancer Aids, diabetes….they become valuable models to follow the
treatment possibilities and perhaps to intervene in human disease process through an
analogical model.
It holds more and more the promise to correct debilitating human diseases.
For some however, in a more essentialist framework it has the potential to radically
alter “human Nature”( we will have to ask ourselves if such a concept has an
ontological reality)
The ethical question raises from the old conflict between the evolutionist model and a
more essentialist or creationist model. This question raises the more fundamental
question of barriers between species that would make us morally culpable of breaking
the barrier between them?
The more pertinet question in our European set of values inherited from Kant is:Are
we morally permitted to intentionally create an organism that would be a mere mean
to an external end?
Will we create an ecological damage ? Can this knowledge be used wisely? under
which democratical conditions?
My purpose is not to answer to those general questions but to underline their existence
in the general public.
Recent innovations allow the manipulation of genetic information between vitually
any plant animal or human. In a knock out experiment( creation of a mouse with a
defective conductance regulator gene for instance) the genetic information
manipulated is from the same species. Thus the resulting strain of mice which exhibits
many attributes similar to human patients is not truly transgenic anymore.
The creation of a strain of mice with defective CFTR genes seem to present a
reasonable model for study CF in humans.
The application for improved human health is unquestioned. Insertion into mice
genetic elements believed to be responsible for oncogenensis provides a system of
study expression. Ultimately this technology promises direct intervention into human
genetic diseases by replacement of dysfunctional genes.
Bone marrow cells can be removed and manipulated in vitro, recently the issue of
embryonnic stem cell has enlarged the scope of manipulation and variation.
Transgenic animals have been clearly created to produce pharmaceutical products that
are difficult to produce by other means. They have become a radical new tool for
fundamental research both in agriculture and human medicine.
The present development of transgenic organisms has parallels with the debate in the
70 about recombinant DNA, the technique gave a tremendous power to scientists and
a new epistemological vision on Nature.
Transgenic organisms are therefore artificial creations designed for intentional
purposes, but they are also living beings and are part of the evolutionary linked web
of what we use to call Nature.
This raises a fundamental question of epistemology
Is there such a thing as pertaining to a species human; or otherwise?
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1) the essentialist species concept olds that “each species is characterized by its
unchanging essence”(plato, Aristotle, fixist theory )
2) The nominalist species “rejects the notion of essential character and conceives
of species as groups of organisms with common attributes that share a
common name”
3) Modern notion of species “a reproductive community of populations”
(Darwin, or khunian paradigm)
The last definition involves the choice of evolutionary theory which is an
epistemological and ethical choice.
Modern biology generally assumes that populations in ecological niches are
evolutionarily derived , so that from a scientific perspective there is nothing new
under the sun with transgenic organisms which questions more essentialist or
creationist views of the world. For the common citizen a transgenic organism is a
monster like a satyr or a minotaur, since Nature (deus sive natura) could not make
replication mistakes. Such mistakes came from human sin.
Darwin used to say
“ I look at the term species as one arbitrarily given for the sake of convenience”
Second part
How does this epistemological reflex ion brings us to our core issue, mainly
1) Are there any ethical reason not to develop and use germ line therapy or
2) We would have a moral obligation to manipulate living organisms if the
finality is to cure human diseases.
We are told almost every day that medical science is at a new frontier by being able to
use embryonic stem cell for research. What difference does it make to be able to use
embryonic stem cells ,does it mean we do not need animal modelisation anymore?
If we accept the hypothesis according to which “all living beings are part of an
interwoven net of living beings formed by evolution, we must add that as far as we
know, human beings are the only species aware of this web of Nature and reading it in
terms of moral responsibility. Is this culturally or genetically grounded? We know
that the process of evolution began before the appearance of men on earth and might
continue after him, Arguably knowledge itself is a human value and its pursuit
perceived as an ethical responsibility in most parts of the world. But are we under any
intrinsic moral obligation to respect species barrier? As this question the same weight
in the laboratory and in the so called “natural world”?
Potential of causing or allievating pain
A second moral consideration associated particularly with laboratory research is
potentially more serious from an ecological point of view. The concern involves
possible harm or suffering an individual transgenic animal might experience. A strain
of mice develops many symptoms common to human cf, including premature death. If
one accepts the claim that transgenic mice are not in principle different from other
animals , then questions about pain and suffering should be regulated as for other
animals. The moral parameters must nonetheless be contextually defined. After due
consideration if we are pragmatist we might coherently conclude that creating a strain
of mice as models of cf is morally justified since the intention is to alliviate human
suffering and humans are superior beings (is that true? )
It becomes problematic if we use similar techniques for the pleasure of designing our
pets for convenience such as dogs with short legs so that they would not run away!
All those judgments rely on the belief that human beings are the only organism in
evolution aware of the fabric of nature and responsible of being his Shepard or
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guardian. But the last century has given us examples of human hubristic
misunderstanding of natural organisms and vulnerability of the echo system. The
major problem we have to face is that the scale on which we van change Nature differ
radically from our previous capabilities.
As Wilson used to say “ecology is much more complex subject than physics”
From theoretical beings to human application
For some it is obvious that we would be morally culpable if we had the capability to
aliviate the suffering of a genetic disease and we fail for “cultural reasons” to use that
ability and knowledge. But (by the way are we not confusing knowledge and
thought?)
This too obvious conclusion might lead us onto a slippery slope . distinctions between
profound genetic defect, with their associated suffering and merely attractive traits
that individual’ s might like their children to possess for enhancement purposes. Cases
between these tow extremes are often more subtle in ethical evaluation.
The moral obligations become even more profound and difficult when we ask about
our obligations to our future offspring of individuals suffering from a treatable genetic
disease. We may be morally obligated to treat somatic cell deficiencies in an afflicted
individual
What are the new question this is supposed to raise?
On august 2000, the English government made the decision to allow cells to be taken
from human embryos less than 14 days old to create new kinds of treatment for now
incurable disease. Biomedical scientists see stem cells as a new weapon against
cancer , spinal injury, Parkinson’s disease and biotechnology firms are anxious to turn
theoretical possibilities “into practical treatments”
Embryo stem cell research is a new field that leads in England to therapeutic cloning,
this makes possible the transfer of genes from one person into the nucleus of a cell
taken from onother.
SO here again you have too ideological camps1° cherish life
2°dont consumme it
“this could stop terrible disease and alliviate human suffering”
Can we make a hierarchy between these two arguments or do we have to proceed
differently?
I am indebted in my reflexion to a symposium that was held in 1992 in Amsterdam
entitled
“ Philosophies of Nature and animal biotechnology”
that made me think seriously the problematic difference between the so called animal
and human realms.
Oncomouse , bst cows and transgenic fisch among other bioengineered exotics have
appeared in practical ethics discourse. These technologies involve the introduction of
foreign genetic material (usually from another species)into more standard
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reproductive processes. These new technologies have the potential to alter nature
animal or human radically
What kind of problem is raised by contemporary genetic manipulation of living
organisms?
David Page of the Whitehead Institute for biomedical research at the Massachusetts
institute explain's today's genetics using an analogy taken from the home, In his view ,
the cell is a kitchen the genome is a shelf in the kitchen , the chromosome is a
cookbook on the shelf the gene is a recipe in the cookbook and a base pair is a single
letter in the recipe, but this metaphor, the …. of a recipe is problematic since it
supposes that the genetic is a program and the recipe a blue print I would rather
imagine like Atlan does a more complex model where, the gene actively administers
the cell's work, and respond to cellular event. Which is a less essentialist model.
This definition as an impact on the notion of patenting and intellectual appropriation
of biological material by private firms….They are interwoven with other bioethical
questions : informed consent body as property, animal rights xenotransplantation, The
Asilomar conference was a landmark of social responsibility and self governance by
scientists. Since the human genome project ELSI ( ethical legal and social
applications) has become the largest supporter of bioethics research but his program
cannot keep up with the pace and advance of genetic research , concretely it cannot
regulate that research without the mediation of the researchers themselves.
To say that the bioethical issues involving gene patenting generally follow a
biological hierarchy , such as plant-animal -human would be overly simplistic . The
issues of the debate over animal patents are precursors to similar concerns in the
extension of patenting to humans. (the golden cell man issue)
Gene patents are essentially legal creations about science, in the language game of
science that might not be immediately translatable into social terms.
The objects of patent need only be new but his something born considered new? Are
we not confusing reproduction of entities and birth? I should do a feminist reading of
the question but today it will remain an open question!
My second part will point to the fact that the neutrality of the information gathered on
the oncomouse is immediately translated when it is used in clinical terms in issues
that shake our representation of the self. I will take the example of genetic screening.
From research to clinical application
Is man the screen or the magic slate of genetic screening?
From description to interpretation
Since the domain of genetic screening of hereditary diseases such as cancer is not as
obvious as some geneticists would want us to believe, The ethical question on genetic
screening is twofold:
1) How can we interpret genetic data without projecting ideological hopes or
fears on them?
2) How can we signal that believing in genetic data to give a true representation
of a person is a form of socio-biologism?
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Since the ethical question is linked to a semantic slope from screening to genetic
therapy as though the possibility of the first gave the assurance of the second. My
purpose will not be to criticize screening, but to signal that it promotes a new form of
ideological eugenism that we should pay attention to. The main problem is the
confusion between the eradication of "bad” genes and the destiny of the carriers of
these genes. Being a genetic holder of a bad gene makes of you a new pariah or at
best, an object of experimentation. The danger is not biological, it is not the matter of
modifying the genetic patrimony at large but modifying the self-image of individuals
in cases where the cure remains a mere utopia. Is it legitimate to give a diagnostic of a
disease that has no cure?
According to Freud’s magic slate theory, our interpretative mind made us capable of
being more than receptors of external data. Working on this metaphor, and applying it
to our genetic data, allows us to reinscribe them in context. According to this
hypothesis, we are not condemned to our "genetic heritage". It is with an awry gaze
on screening practice that can emerge a more ethical practice. My main question will
be: how to go out of a frame of thought that traps the bioethicist, the scientist, the
politician or the citizen in a flawed epistemology ? In such a scientist frame human
cultural memory is bracketed to give space to the mere material somatic memory of
our genes, doesn’t-it limit the respect of human dignity referred to in seven articles of
the convention of the universal declaration?
Why are we put in a situation where we seem bound to choose between our subjective
or objective memory as though these where not entangled in us as subjects?
This is for me the background issue of the legitimacy of screening. If we had to
determine an ethical threshold on when what and who can legitimately be screened, it
should be a screening that does not create a conflict between a memory of our genes
and that of our whole body without letting the reading of the normality of genes
impose a totalitarian control, or at least a new hygienism on what we accept as genetic
determination, or refuse as genetic determination, through an act of freedom. Here
again scientific knowledge can be liberating if it responds to a question asked that
could enhance my capacity to act for myself, or for my child in a preventive way it is
alienating if it imposes an information that limits my capacity to act, and destroys my
hope from liberating myself from disease as destiny
This will lead me through a set of examples to situate the emergence of socio-éthical
question that limits the pertinence of considering the patient subject as a mere screens
where you can read genetic information and deduce action. Remembering the capacity
of interpretation, hermeneutics of genetic data is remembering the capacity of man to
be a magic slate, not to promoter oblivion of objective knowledge but to remind our
geneticists the fragility and incertitude of data separated from their bearer. If the
vulnerability of our genetic heritage is obvious to us all it should not petrify us in the
fear of our determination but be used instead to enhance the potentiality of predictive
medicine when a possible cure is at stake.
In conclusion I will insist on the fact that if the genetic of populations pretended to
describe the destiny of humanity molecular genetic testing is at risk of making the
false promise of describing the destiny of the individual and developing new forms of
exclusion in the name of solicitude. Does it signal a weakness in biological theory
making of the gene to associate it immediately to a name of a disease? Does it make
sense to speak of the gene of cancer?
Isn’t the fundamental question an epistemological one: that of the confusion between
the hypothetical genetic therapy and physiological programmation? The ethical
reflection needs to get reed of the dogma of the genome as a program that awakens
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the ideological sirens of the genetic determinism of deviant behavior; such a discourse
allows some political reactionaries to speak of the biological cause of social
inadaptation. A clear separation between scientific and sociological discourse is in my
eyes the first task of ethical reflection. It is the only hope that history want repeat
itself masking its recurrent discourse under a magic slate with no memory. I will try to
illustrate that our bodies are even more than magic-slates, palimpsests. They keep a
trace on our bodies that awaken our minds. That is why we are neither programmable
beings, nor reducible to our genetic heritage.
What are the general questions araised by genetical screening ?
If every body agrees on the benefice we can expect from preventive medecine , very
few can really point out with certainty when genetic screening as a real beneficial
effect.
If we are dealing mostly with what Jean Hiernaux called in 64 …? nique which
means the attempt to place each individual in the conditions in which is genetic
héritage would at best realize irs positive aspects ’ we do not have yet the idea of
enhencement, but simply of capitaliziing on’s patrimony. Nor from an individual nor
from a collective point of view.
This gives us a mean to differentiate between two moments the time of the act of
screening and the degree of certainty that we expect from the results of the screening.
We might thus oppose as the french did :
-a diagnostic of certainty and
-a diagnostic of susceptibility.
This implies of course that the results are for the benefitsd of the pateient and not of a
savoir-pouvoir that could lead to discrimination policies, or inssurance companies that
would penalyze paradoxically any person at risk of being in need of the assurance
protection.
Allt hes promises are at best put at risk anyway by the informatisation of all the
nominative data of the persons who had been screened.
But these worries are precisely balanced in law by the euphénique aspects of
predictive medicine that a priori seem to increase or democratize the access of health
for all , in a logic that takes into account the vulnerability of persons at risk with the
pormise to reinforce the ethical principal of equality and solidarity. We will have to
scratch a little bit beyond this nice representation that glitters like a good
advertisement campain to see like in a policier what is really beyond this scenario not
from a paranoid point of view but precisely from a preventive ethic point of view.
(essentially in law protecting access to employement beside a genetic fragility)
The ethical aim is to avoid prejudice by deconstructing ideological pre-judgments.
This is a fear that was regulated by 1990 french law that added to the forbidden
discriminations those founded on handicap or health .
This does not solve the issue of how to present the positive aspect that information
might bring to prevention attitude.
But here again we have to introduce the uncertainty principle and remind ourselves
that the gene coorespond to a factor of biological determination which expression and
functional meaning depends on a multitude of opther factors which are not
predictible. If ignorance is rarely a factor of freedom and responsibilisation but
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knowledge of genetic data makes the person responsible of its conduct introduciong a
form of hygienism that is always suceptible to turn into social eugenism.
If no cure is available for a multifactorial disease , it shoud not be presented a s a
diagnostic although I would not defend a rigght not to know that is antinomic to a
responsible and autonomous attitude. It is the quality of the information which is at
stake and not the fact of giving it or not the importance of differenciating again
between a susceptibility and a certainty is essential here.
We are repeating these classical recommendations for about ten years now, and the
genetic revolution invites us to be more advanturous , to erase the boundaries between
disciplines À
it will give us new tools to manipulate the environmetal factors in relation to
individual À
genetic endowment, thereby personalizing prevention and therapy.. ’ says the world
health organisation in its 98 report.
À
Completely new paradigms will result from the application of genetic knowledge,
ÀÝ
genetic and cell culture technics provide hope for replacement tissue for patients with
parkinson’s diseaseand epilepsy this inversion of the nightmare of brave new world
into wonderworld is a dream that asks for some interpretation.
If cancer and aids are still the present of suffering patients and frustrated clinicians, if
the discourse of palliative care was for some an awakening from the false promises of
perfect health all thes cautionnary discourse semm again masqued by an abstract
promise th at sounds as an insult for the individuals for whom medical discourse
sounds like a religious discourse of lendemain qui chantent while the sixties prepared
them to stand up for their right to happyness now, on an ndividual and not on a far
collective level.
How should we interpret the ddream of perfect health in an era when the agents of the
dream are neither the patients nor the doctors but the pharmaceutical trust
management of our dreams ?
Lets see how the research on embryonnic stem cells brings new promisses for cancer
cure in david and goliath scenario.
Å
Geron messianic approach to cancer cure : Ä
The poper aspect of a dream is that it feeds on repression of anguish but the dream
that took place in the privacy of our bedroom is written on every computer screen and
promisses to realize now the betterment of human health which is in an era of ethical
pluralism a consensual definition of the good.
But right and responsibilities are asserted
 -privacy and confidentiality must be maintained
 -private sector will be submitted to public regulations
 -With regard to screening theprinciples of voluntariness , consent, information
and comprehension must always be upheldÀÝ
.
All these assurance principles are projected on our screens televisions , newspapers,
computersÀÝ
.erasing as on a magic slate the socio-économical dreterminations that reduces all
these to petitions de principes.
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The intentionality of the WHO to share this information with the public and empower
them rely on the principle that information increase freedom and responsibility. What
allows to advertise this information is the belief that the benefice of genetic screening
is twofold :
1À$
indirect through the advancement of knowledge leading to a new possibilities for
instance with presymptomatic tests and predictive tests to estimate for instance the
chance of a breast cancer to develop later in life. On this promisse of total insurance
Neo gen lab for instanc epromises ’ a high risk clinical screening that offers
diagnostic services at substantially lower costs that currently avalable in other
laboratories (WWW.neogenscreening.com) In these case knowledge entails a parental
responsibility to detect any risk of disease and makes of screening a tool of
management of À
affected infants ’ and I have a problem with the adjective affected because here we
have again in most cases a confusion between susceptibility and certainty. Even if no
changes in the gene are found , the person still has the same risk of getting cancer than
without screening, this information is rarely given to patients. So what is selling
Neogen ?and for whose benefits with what predictible adverse effects ? are we
blinded by our dream of perfect health as to loose any capacity of thought which
alone conditions our freedom can we be freeÀÝ
risk free ?
-2 Second benefice : direct through improved treatment , (very rare situations at this
stage.)
My ethical question is about what kind of representations of screening benefits are
proposed to patients involved concretely with screening . All rational to justify
screening take for granted the fact that people whose risk is raised will act rationally
while those whose risk is lowered will not. This element of complexity brought by
human subjective interpretation of data is masked behind the screen of the
reductionist approach of scientism rationality ,as though we were not condemned in
order to protect our freedom of thought from inflated promises, to interpret and
choose among conflicting and fragmented rationalities.
The legitimation of screening and testing by research medicine is the promise to be on
the right track to find a cure, but the patient involved in the process will not
necessarily be the one who benefits from the advancement of knowledge.I am
generally told that it is a risk inherent to experimentation on humans ?but risk
perception is nowadays a recognised field of study . If treatment benefits are to be
gained from genetic screening it should be at the sole condition that perception of
raised risk is a stronger motivator than perception of lowered risk.
Will Geron , or any other lab research going to erase this dilemma ? some believe it
will. I read in the march issue of Scientific American that À
Nature genetics provide good news for researchers seaking to immortalize cells
telomerase, absent from most normal cells keeps chromosomal tips from shortening.
In contrast 90 percent of cancer cells contain telomérase, relying on it to divide
indefinitely ; so that we could think of À
immortality without cancer ’ this is the promise of geron labs since stem cells have
the ability to divide without limit and to give rise to specialised cells. The interest in
telomère is soaring because of the convergence between research on embryo aging
and cancer, is based on a convergent research.
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Telomère shortening says Calvin Herleys from Geron explains that cancer cells which
ignore the limit might have long telomères and active telomerase,human telomerase is
a critical enzyme for the growth and proliferation of immortal tumor cells so that
halting telomere extension in cancer cells might open a new treatment approach.
Telomerase activity as been linked with severity of illness. Does it give more
justification for screening or more security ?
Are we allowed to pass from caution to hope, or are we confusing the language games
of science with that of individual and social effect of these data?
À
The research on telomeres allow to imagine new drugs that kills À
immortal cancer cells ’ if the cure opportunity is real then we are left with certainty
screening ?
When on the 19 of january the NIH allowed experimentation on embryos ‘s totipotent
cells the conditions of realising the ancestral dream of immortality and curing cancer
deplaced the ethical debate as though efficiency could erase any doubt on the magic
slate of our bodily consciousness.
Factually we can all aknowledge that the isolation and culturing of human pluripotent
cell opens new avenues of research whose goal is to identify the environmental
signals that direct the specialisation of a stem cell that will provide an understanding
of abnormal growth and allow to prevent cancer and ease on the fuss and cost of
screening
But again , we are still at the level of promisses who have the strange capacity to
transform new ideas into ideology. Heidegger used to say that science does not think.
Leibovitz answered that this is since science pretends to be axiologically neutral .
Why is then genetics becoming so substancialist as to promisse happyness in
exchange of erasing all boundaries between living beings ?the facts that elements of
genetic language enter in our every day language makes of this language a synthetic
language englobing in an informative synonymie all data. Heisenberg noted already
that the knowledge of living organisms erases the important distinction between
observation and phenoména thus depriving us of theright distance allowing
interpretation. (voir Bohr, la théorie atomique et la description des phénesp. 19 cité
par JacquesRozenberg, dans la biocognition de l’individualité, p.214)
What is the interface between biological and psychic domainsis there a possible
continuum or an impossible translation that remains repressed behind the screen of
phenomena ?
, Only thinking can awaken the traces of false hopes and their consequences carved on
the magic slate of our memories. Why hope can best express itself in simplistic
representations ?Utopia as always made us slaves of unchecked beliefs.
The new scientific advances present the ethical debate on screening as outdated, ?It
would be naive and not innocent to believe we have a cure coming that will allow us
not to use preventive means anymore ?a preventive ethical attitude is to realize that
gene therapy strategies for cancer offers potential in the long run and claims of
succesful therapy remain anecdotal. The enthusiasm to proceed to clinical trials
should be thought through. Moerover, the interpretation of phenomenological results
lack of rigourous ly defined disease endpoints. The inaccurate portrayal of gene
therapy promises,might have the reverse effect exepected since it threatens
confidence in the integrity of a field more and more alienated to private research
money.. This is why the investment of public money should be made in regard of a
criteria of distributive justice towards other urgent fields of research. The conflict of
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interests between individual patient and global advance of research should be
reevaluated in regardof the specific field of genetic research.
À
While this research shows extroardinary promise , there is much to be done before
these discoveries can be incorporated into clinical practice ’
But In this genetic age, Caskey is able to say ’If established therapeutc options were
available for at risk individuals, the ethical debate would be eliminated, since
screening andÄ
therapy would be coupled" Ä
Does it remind you of something ? find the trace on the magic slate of your memories
and resist any discourse that promises too much here and now. That would save us a
lot of so called ethical debate resumed around fighting against a demesurate hope and
a demesurate fear nourished by miscomprehension of the need to adapt fact to a frame
of social interpretation.
The main question remains is prevention possible in order to avoid both genetic
essentialism and genetic fatalism, some principles will guide us through this journey
without giving us any certainty. The genetic age remains an age of uncertainty the
only certainty remains in our finitude, itself relative to our capacity to transform hopes
into freely interpretable facts. This requires a sharing of scientific data and a public
debate to choose public health policies compatible with our democratic principles of
preserving all humans rights. This wish is a long range project that should not enter in
conflict with the utopia of disease free humanity, but temper it.
Mylène Baum
Université Catholique de Louvain
Unité d'éthique biomédicale
Mars 2001
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