European associations of people with Down syndrome will hold a round-table discussion on Thursday, hosted by the Parliamentary Assembly of the Council of Europe (PACE), on the subject, “Eugenics and human rights, issues of prenatal screening.”
The meeting and an associated declaration – signed by 25 national organizations to date – are a response to a case currently before the European Court of Human Rights, which campaigners say centers on nothing less than “how European society defines humanity.”
A Latvian woman who give birth to a girl with Down syndrome in June 2002 is arguing that she should have been given a blood screening test as part of “prenatal care.” Anita Kruzmane argues that had she undergone the test, she would have been in a position to decide whether to go ahead with the pregnancy.
The European Center for Law and Justice (ECLJ), an affiliate of the American Center for Law and Justice, is acting as an intervener in the case. It is also helping to organize the meeting on Thursday, which Gregor Puppinck, director of the Strasbourg-based ECLJ, said “is intended to raise the awareness of institutions about the eugenic current of European society.”
“This is the first time that so many organizations, dedicated to persons with Down syndrome and disabilities, have mobilized at the European level to denounce eugenics and discrimination,” he said.
Puppinck noted that in France, 96 percent of unborn babies diagnosed with Down syndrome are aborted.
After the meeting, an Italian lawmaker, Luca Volonte, plans to submit a resolution to the PACE, reminding states of their obligations toward people with disabilities.
“Under European and international law, States have an obligation to protect the life and health of every person, in particular people with disabilities,” said Puppinck.
Kruzmane’s case has alarmed pro-life and other rights activists.
The complaint reads in part, “The applicant complains under Article 8 of the Convention that, owing to the negligence of a doctor, she was denied adequate and timely medical care in the form of an antenatal screening test which would have indicated the risk of her fetus having a genetic disorder and which would have allowed her to choose whether to continue the pregnancy.”
“The Convention” refers to the European Convention of Human Rights. Article 8 states: “Everyone has the right to respect for his private and family life, his home and his correspondence. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.”
In written submissions to the European Court of Human Rights last April, the ECLJ said that behind the “convoluted wording” of Kruzmane’s complaint lay the following questions, to which the court would need to respond: “Does the Convention guarantee a right to eugenics for parents, and in particular to the procedure of prenatal screening-elimination of sick or disabled fetuses? If so, does the State have a positive obligation in this regard?”
Puppinck said the issue of human rights needs to be “rehumanized.”
“People with disabilities, like other categories of people in other times, today have an obligation to demonstrate their humanity in order to enjoy the protection of human rights,” he said.
“Faced with this, we must work, not only to humanize our view of disability, but also to ‘rehumanize’ human rights, because there is a tendency to develop a very abstract and disembodied idea of man, an idea which may finally prove inhuman, as demonstrated by the consecration of a ‘right to eugenics.’”
According to the National Down Syndrome Society, one in every 691 live births in the U.S. is a child with Down syndrome, and today, more than 400,000 people in the U.S. have Down syndrome.
“Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today,” it says. “People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.”
The NDSS’ position on screening is that it should be available to all pregnant women who want it, but that the decision on having the screening or not should be solely that of the mother.
“All expectant parents should be informed as to the purpose of the various screening and diagnostic prenatal tests and given information on the risks, limitations and expense of the tests,” the society says.
“All women, regardless of age, reproductive history or disability status, must be given the absolute right to continue a pregnancy after prenatal diagnosis. They should never be subjected to unwanted pressure from health care professionals or others concerning this decision.”
The PACE is a body of European lawmakers representing the 47 member states of the Council of Europe, a grouping formed in the aftermath of World War II and responsible for the European Convention on Human Rights and the European Court of Human Rights.
Not to be confused with the much smaller European Union, the Council of Europe includes Russia and other former Soviet states including Ukraine, Georgia, Moldova, Armenia and Azerbaijan.
The 47 members’ national parliaments appoint 318 representatives to serve on the PACE, which meets four times a year in Strasbourg.