Thursday, March 23, 2017

We do not want a Down Free Society but a Down Friendly Society


On the 21st of March, we celebrated the World Down Syndrome Day at the European Parliament. The activities to honour this day started last week, when the Brussels office of ECPM took part in the Socks' Battle that was organized to draw attention to the rights of people, and especially children with Down syndrome. Yesterday, ECPM-MEP Marek Jurek co-hosted with MEP Miroslav Mikolášik a well - attended conference with the title: "Are we in Europe doing our best for the health of people with trisomy 21?" The Conference was addressed by the President of the European Parliament Antonio Tajani as well as MEP Pieter Liese. During this conference, I was invited to tell about the NIPT Test that is a serious threath to the future existence of people with Down Syndrome. I also presented a statement we prepared against the use of prenatal testing techniques that target Down syndrome in collaboration with the World Youth Alliance and based on the petition of the LeJeun Foundation.
During the Conference,Mr Tajani underlined the need for more funding for research and the need for politicians as well as the EU to work towards finding solutions on issues pertaining to the equal participation of people with Down syndrome to the society. He hailed the efforts and courage of people with Down Syndrome by saying "You are for us a school of love, a supplement of love". His contribution was followed by many experts who outlined the progress that has already been made on the medical and educational field. In the past few decades, the life expectancy of people with Down syndrome has increased and level of their participation to society has been markedly improved. A special moment came when children with Down Syndrome asked questions to the MEPs.

During the conference. MEP Marek Jurek asked me to take the floor to present a statement we prepared against the use of prenatal testing as a tool against  Down syndrome (the so-called non-invasive prenatal testing (NIPT). In Iceland, the use of NIPT techniques has resulted in the abortion of all unborn babies with Down syndrome. As it is written in the declaration: "While these techniques are great technological advances when they are oriented and driven by therapeutical goals, they are becoming eugenists’ tools when they are targeting genetical conditions with no possible treatments with the purpose of suppressing them before birthIn a report published on the 28th of February 2017, the UK Nuffield Council on Bioethics warns that if it is made widely available, the test would lead to a large increase in the number of babies being aborted on the basis of disability. In fact, studies show that when mothers are informed about the possibility of having a disable child they chose to abort them in 75% of cases."

We are not against the use of NIPT tests in general. However, researchers should focus on developing the them for conditions that can be successfully treated in the womb in order to improve the lives of people with disabilities. They should not be used as eugenists' tools for genetical conditions that cannot yet be treated. The European Parliament as well as national parliaments should protect people with Down syndrome and other genetical disabilities from discrimination before birth, stopping the use of NIPT testings for non-therapeutical purposes. Therefore, in the statement we prepared, we urge the European Parliament and national parliaments to:

  • Stop systematic prenatal screening programs that target Down syndrome and deliberately encourage abortion as part of public health programs
  • Regulate the introduction of prenatal testing based on the principles defined in the Universal Declaration of Human Rights, in the Oviedo Convention (articles 11 and 12) and in the EU charter of Fundamental Rights (articles 2,3,21, and 26), the UN Convention on the Rights of Persons with Disabilities (articles 5,10,14,15,23,25)
  • Allow the use of genetic testing solely to enhance human care and well-being, and not to discriminate against people on the basis of their genetic predisposition.

It is inhuman to decide who lives and who dies based on someone’s genes. Children with Down syndrome are not inferior but different and  beautiful, loved and valuable for all the people around them. They give colour to their environment and to our society by inspiring and motivating others. We want to have an inclusive society, in which everyone despite of his or her limitations is welcome. We don’t want to have a Down syndrome free society, but a Down syndrome friendly society in which dependency is not a shame, but in which it is valuable to be there for each other. Children with Down syndrome belong to us, they bring joy to our lives, they give us love, they are one of us.

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