Many countries are on the brink of expanding National prenatal screening programs with a new generation of genetic tests aimed at detecting Down syndrome.
With selective termination rates following prenatal diagnosis already higher than 90% in these countries, the result will be catastrophic. While many denounce gendercide and few would argue that parents should be free to abort a girl because they prefer a boy, when it comes to Down syndrome, the logic tragically changes. It becomes a valued individual ‘free and accepted choice’ to discriminate against people with genetic variations. How is this possible?
Babies born with Down syndrome today can look forward to a long and qualitatively good life. In fact, research on this population shows that people with Down syndrome and their families rate their quality of life above average.
Government encouraged selective abortion, the refusal to provide health-benefits, or the refusal to provide adequate medical care equal to that provided to their typical peers is a social and moral crime against all people with disabilities and their families who thanks to developments in research, medical care, and social acceptance have many possibilities. The expansion of government sponsored prenatal screening and abortion stand in stark contradiction to the social progress made over the past 40 years towards an inclusive and equal society.
While throughout the world we petition, walk, and meet together to fight against discrimination and to protect biodiversity, no-one should have to defend threats to their life because of his or her genetic make-up. In a humane world aware of the need for acceptance and inclusion of differences, people with Down syndrome should not be discriminated against.
We hereby call upon the Secretary-General of the United Nations, Mr. Ban Ki-moon, his United Nations High Commissioner for Human Rights, Prince Zeid Ra’ad Al Hussein, the Commissioner for Human Rights from the Council of Europe, Mr Nils Muižnieks and the European Commissioner for the Charter of Fundamental Rights, Mr Frans Timmermans, to express 3 requirements to member States:
- Stop systematic prenatal screening programs that target Down syndrome and deliberately encourage abortion as part of public health programs.
- Regulate the introduction of prenatal genetic 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.