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To ensure that eugenics does not become a human right:
WIDESPREAD EUROPEAN MOBILISATION OF ASSOCIATIONS AND FAMILIES OF PEOPLE WITH DOWN SYNDROME

With the European Court of Human Rights (ECHR) preparing to issue a ruling on the fundamental right to “the procedure for the prenatal screening and elimination of children with diseases or disabilities”, associations and families of people with Down syndrome across Europe are calling for the support and mobilisation of all European citizens. In their declaration entitled “Eugenics is not a human right” put online on the website www.stopeugenicsnow.org, citizens are invited to mobilise alongside them: such a decision would not only amount to a violent aggravation of the stigmatisation of disabled people but would also generalise and make into a human right the process of selecting and eliminating people deemed to be “not in conformity”.

In the case currently being examined by the European Court of Human Rights (ECHR) (Kruzmane vs. Latvia), the mother of a girl with Down syndrome complains that she was not able to have a blood sample taken to screen her for Down syndrome during her pregnancy, screening which may have revealed that her daughter had Down syndrome and allowed her to take the decision to abort. The applicant claims that this screening-abortion procedure forms part of the “prenatal care” necessary for monitoring pregnancy and that access to it is guaranteed by the fundamental right to respect for private and family life.

By submitting the case to the ECHR, its impact is greatly amplified since for the first time the European Court has to rule on a supposed right to abortion based on the health of the unborn child as predicted by their genetic makeup (in the present case with Down syndrome). The decision of the Court will indicate if the abortion of a child who may be diseased or disabled is a fundamental right.

Such a decision by the ECHR would impose on the legislation of all the 47 Member States a fundamental right to abortion owing to a disability detected through screening, whether it be Down syndrome or another condition. However, indirect abortion is not a right of the mother but an infringement of the right to life. When indirect abortion is legal, it is submitted for the sanction and authorisation of the medical profession and cannot be carried out simply at the mother’s request. Furthermore, what will apply for Down syndrome will be the same for any other diseases detected by screening before birth, and even for genetic predispositions carrying the risk of the development of other diseases.

The “Screening-Elimination” process as it is often adopted already leads in many Member States to serious eugenic abuses (in France, for example, 96% of foetuses detected with Down syndrome are eliminated). The case of Kruzmane versus Latvia goes even further: making into a fundamental human right the right to terminate the life of unborn children with Down syndrome will lead to further stigmatisation and rejection of a human group based on their genome. Moreover, this comes at a time when the possibility of postnatal selection is already being debated in the Netherlands with the “Groningue protocol”.

That is why Down syndrome associations of European countries (Ireland, Spain, Latvia, Poland, Germany, France, etc.) have united to draw up a common declaration addressed to Europe’s institutions and invite all the other European associations and citizens to support it by signing the online declaration on the website www.stopeugenicsnow.org.

DECLARATION

Eugenics is not a human right

Should the elimination of one’s unborn baby because it has Down syndrome be regarded as a fundamental human right? That is the serious issue in a case before the European Court of Human Rights (ECHR), which has been called upon to rule on whether parents have a fundamental right to the prenatal screening and elimination of sick or disabled children.

A favourable ruling by the Court would amount to recognising as a fundamental right eugenic solutions to disabled people.

The Court is called upon to rule on the complaint (KRUZMANE versus Latvia) filed by a woman against her doctor who, allegedly, did not prescribe a screening test for Down syndrome for her during her pregnancy, which would may have shown that her child had Down syndrome and enabled her to have an abortion.

Faced with the danger of prenatal screening and elimination becoming enshrined and consecrated as a human right, the signatories of this declaration (associations, families and those close to people with Down syndrome and other disabilities) appeal to the conscience of the Court and to European institutions to recognise the humanity, and protect the right to life, of people with Down syndrome and other people with disabilities.

Recognising as a human right the elimination of children with Down syndrome before their birth amounts to stigmatising a human group selected on the basis of their genome. A favourable ruling would deny purely and simply the humanity of the persons with disabilities and setup in law the mechanism for their elimination.

Already, the systematic elimination of children with Down syndrome in Europe constitutes a real violation of human rights. Not the fact that some may have escaped this selection because there was a failure to identify them before birth.

We (associations, disabled people and their families), call upon the Court to reaffirm the principle of the prohibition of eugenics, and the obligation of the Member States to protect the life of every person, including the lives of the disabled people before their birth. What is at stake is how our European society defines humanity.

Dauna Sindroma Biedriība - Latvia

Deutsches Down-Syndrome – Germany

Down Sndrome Ireland - Ireland

Fondation Jérôme Lejeune – France

Fundacion Sindrome de Down de Madrid - Spain

Jeden Świat - Poland

Ukrainian Down Syndrome Organization - Ukraine

European Down Syndrome associations (EDSA)

Down Syndrome Education International

www.stopeugenicsnow.org