While we
celebrate this year the 50th anniversary of the discovery of the origin of
Down Syndrome by Jerôme Lejeune 2, Jean-Marie Le Méné, chairman
of Jérôme Lejeune foundation 3, published a book in which he
dismantles the workings of the organisation of French screening, first
public policy of genetic discrimination. Where is the scientific progress
when the genetic advances work to the advantage of screening instead of
treatment ?
The tragedy of Down syndrome
The story of Down syndrome is that of an extraordinary discovery which turns
against those it has to serve. Like Pr Lejeune dread it, the identification
of the 3rd chromosome on the 21st pair today serves to kill the patient
rather than to eradicate the disease. And, today, nobody or almost nobody –
wonders about the scheduled disappearance of children who carry this
pathology. "The discovery of Down Syndrome was a progress in the
knowledge of this disease which has to give the science, the State, France,
the humanist will and the technical means to achieve curing patients",
but, "the contrary occurs: this progress of the knowledge produced a
regression and supplied death tools to get rid of patients being very young".
Today, in France, the screening tests are proposed, in a mandatory basis, to
all pregnant women: 96% of Down syndrome children so detected are eliminated
in utero and can be aborted – legally – until the day before the
delivery.
The profitability of the elimination
Public health policy regarding Down syndrome was elaborated from screening
and prenatal diagnosis (PND) costs compared to the costs of treatments of
Down syndrome people throughout their life. This comparative study concluded
that "the weight of the elimination is socially better supported than the
weight of their existence". To be valid, this accounting presupposes
that a diagnosis for Down syndrome is systematically followed by an
abortion. From 1999, the screening costs were assessed to around €100
million, financed by Health insurance, while there is no public policy for
researching Down syndrome treatment.
Here the question of the free choice of the woman comes up. A recent study
from Inserm 4 showed that "half of the women who accepted an
ultrasonography and a blood test were not aware about that they could be
faced with making other decisions: have or not an amniocentesis and, in the
event of accuracy of Down syndrome diagnostic, carry on or terminate their
pregnancy".
For a better screening
Refining the diagnosis for Down syndrome is eternally a current fact and the
implemented organisation carries on improving. This way, a new antenatal
screening test should be used soon and this from the 10th week of pregnancy.
With a simple blood test, this technique, by analysing genetic traces of the
fœtus circulating in the mother’s blood, will detect in an unquestionable
way those presenting Down syndrome and avoid hundreds of miscarriages due
each year to amniocentesis (1% of the cases). In other words, this test will
catch only Down syndrome people, but will catch them all…
From eugenics to genocide
How a "rule of law can be satisfied with this obvious eugenics"? This
is a legitimate question asked by prime Minister himself. In his engagement
letter addressed to the Council of State on 11th February 2008 for preparing
the revision of the bioethics law, François Fillon was worried about the use
of prenatal (PND) and pre-implantation (PGD) diagnosis: "do the
provisions governing these practices guarantee an effective application of
the principle prohibiting any eugenic practice?".
Finally, when all individual eugenics lead to a collective eugenics so
openly scheduled by the population, is it not time to talk about genocide?
The article 211-1 of French Criminal Code defines genocide as "a
concerted plan tending to the total or partial destruction of a national,
ethnical, racial or religious group, or of a group determined from any other
arbitrary criteria". Indeed, French screening policy is directed at a
determined group, characterised by an additional chromosome, and leads to
the disappearance of 96% of these members.
A hopeless tragedy?
Insisting on the emergency to find alternatives to the "all screening",
Jean-Marie Le Méné makes concrete proposals: teach physicians how to
accompany the families concerned; to "perfect" the rights of Down syndrome
people to be treated, cared in a therapeutic perspective and then finance
the research of a treatment for Down syndrome. Like Professor Jean-François
Mattei committed himself to doing it, at the name of the State, in his
report from 1996 on the generalisation of Down syndrome screening. a
research effort with therapeutic purpose equal to that concerning the
screening must be paid by the State, "subject to think that the choice is
to eliminate rather than to understand the causes of the affection in order
to better prevent".
As a conclusion, the author invites us to be responsible: "the settlement
of the tragedy of Down syndrome, in our hands, remains to be written". 
1 -
La trisomie est une tragédie grecque – Jean-Marie Le Méné, Ed.
Salvator, 2009
2 - J. LEJEUNE, M. GAUTIER et R. TURPIN. Les chromosomes humains en culture
de tissus. C, R. Acad. Sciences, 26 janvier 1959, 248, 602-603. 12
3 - 1er financeur en France de la recherche sur la trisomie 21 –
www.fondationlejeune.org
4 - Prenatal screening for Down syndrome: women's involvement in decision-making
and their attitudes to screening - Valerie Seror, Yves Ville, 2009
|
|
While the Bishop’s Conference of France has
just published "Bioéthique, propos pour un dialogue", with a view to
the revision of the Bioethics law, the Congregation for the Doctrine of the
Faith, in Vatican, in December 2008, published a new instruction, very
expected, on the questions about procreation and biomedical research:
Dignitas Personae. 21 years after Donum Vitae (1987), if the
founding principle of the respect of the dignity of the person has not
changed, the medical technique has developed and new questions come up. In
37 articles, Dignitas Personae answers it.
In this document, the "Magisterium also seeks to offer a word of support
and encouragement for the perspective on culture which considers science an
invaluable service to the integral good of the life and dignity of every
human being" and explains that it is necessary to say no to some
practices to support the cause "of the weakest and most defenceless"
against the temptation of the eugenics related to a medical technique which
today allows sorting, choosing and then eliminating. Thus this text invites
men of good will, Christians or not, to consider that "behind every
"no" in the difficult task of discerning between good and evil, there
shines a great "yes" to the recognition of the dignity and
inalienable value of every single and unique human being called into
existence".
In preamble, Dignitas Personae reminds that "the dignity of a
person must be recognized in every human being from conception to natural
death. This fundamental principle expresses a great "yes" to human
life and must be at the centre of ethical reflection on biomedical research".
In three parts, the Instruction then deals with the anthropological,
theological and ethical aspects of life and human procreation, the new
problems concerning procreation; and finally the new therapeutic proposals
which include the manipulation of the embryo or the human genetic
inheritance.
Dignity proper to the person
As the medical progresses have considerably extended the knowledge of human
life, now we know that "the body of a human being, from the very first
stages of its existence, can never be reduced merely to a group of cells.
The embryonic human body develops progressively according to a well-defined
program with its proper finality, as is apparent in the birth of every baby".
Once this observation made, the text reminds a fundamental principle to
judge the moral questions on human embryo, yet formulated in Donum Vitae:
"thus the fruit of human generation, from the first moment of its
existence, that is to say, from the moment the zygote has formed, demands
the unconditional respect that is morally due to the human being in his
bodily and spiritual totality" ; "the human being is to be respected
and treated as a person from the moment of conception; and therefore from
that same moment his rights as a person must be recognized, among which in
the first place is the inviolable right of every innocent human being to
life" (DV, I,1, 79). This statement is recognised as true by the reason
itself.
Based on the intrinsic connection between the ontological dimension and the
specific value of every human life, describes in Donum Vitae and
included in this question "could a human individual not be a human person?",
Dignitas Personae goes further stating that, as "the reality of
the human being for the entire span of life, both before and after birth,
does not allow us to posit either a change in nature or a gradation in moral
value, since it possesses full anthropological and ethical status", "the
human embryo has, therefore, from the very beginning, the dignity proper to
a person". The second principle in favour of the respect due to the
embryo relies on "the origin of human life has its authentic context in
marriage and in the family".
Procreation and selection
Church recognizes the legitimacy of the desire for a child and understands
the suffering of couples struggling with problems of fertility, and reminds
that "human procreation is a personal act of a husband and wife, which is
not capable of substitution". It specifies that the techniques which
assist procreation "are not to be rejected on the grounds that they are
artificial, but they must be given a moral evaluation in reference to the
dignity of the human person". This way the techniques of artificial,
heterologous and homologous fertilization are to be excluded as they
substitute for the conjugal act (in vitro fertilization (IVF),
intracytoplasmic sperm injection (ICSI)). The freezing of oocytes in order
to proceed to an artificial procreation is also "unacceptable". On
the other hand, "techniques which act as an aid to the conjugal act and
its fertility" are permitted (surgery for endometriosis, unblocking of
fallopian tubes…).
The document then specifies that the freezing and the sorting of embryos
conceived by IVF, the embryo reduction and the pre-implantation diagnosis (PGD),
by treating the human embryo "as mere "laboratory material", the
concept itself of human dignity is also subjected to alteration and
discrimination". Aiming at qualitatively selecting the embryos, the PGD
is the expression of a eugenic mentality "always reprehensible".
Dignitas Personae then mentions the contraceptive, interceptive and
contragestative methods, specifying that, despite a lack of understanding of
the way they function, "effect of inhibiting implantation is certainly
present" and there is abortion intention. The text refers to the
definition of abortion given by the encyclical Evangelium Vitae: as
is known, abortion is "the deliberate and direct killing, by whatever
means it is carried out, of a human being in the initial phase of his or her
existence, extending from conception to birth".
Therapy and genetic manipulation
If the procedures used on somatic cells for strictly therapeutic purposes
are in principle morally licit, it must be stated that, in its current state
of knowledge about incurred risks and due to the implicit resort to
artificial procreation, germ line cell therapy in all its forms is morally
illicit.
The Instruction explains that the human cloning, the research on human
embryonic cells and the creation of human/animal hybrid embryos gravely
injury to human dignity and encourages researches on adult cells.
Finally, Dignitas Personae mentions the ethical problems related to
the use of illicit human "biological material" (embryos and fœtus).
1-
Congrégation pour la doctrine de la Foi, Instruction Dignitas personae
sur certaines questions de bioéthique (8 septembre 2008) |
