The campaign Stop Discriminating Down which is initiated by Jerome Lejeune Foundation and DownPride has alerted the United Nations about a new prenatal genetic screening test primarily aimed at Down syndrome, namely, the Non Invasive Prenatal Test (NIPT).
The NIPT can potentially detect a range of genetic chromosomal conditions in an unborn child by analysing the blood of the mother. The Netherlands, in 2017, will be the first country to routinely offer NIPT under basic public healthcare to all pregnant women.
The formal purpose of prenatal genetic testing is not health gain but to ‘facilitate reproductive choice’. The Dutch government granted a special permit to offer NIPT based on the assumption that Down syndrome is a serious foetal abnormality causing suffering which justifies ‘reproductive choice’.
Given the term ‘choice’ one would expect the woman decides for which conditions she wants to screen her pregnancy. This is not the case: a small group of ‘experts’ have singled out Down syndrome as the primary objective of the NIPT.
This unjustly stigmatizes by suggesting Down syndrome is a very serious condition that causes suffering. The number of selective abortions in the Netherlands when Down syndrome is diagnosed (between 74% and 94% during the past 23 years) does not reflect the very positive life experiences that people with Down syndrome have themselves. (American research report 99%of people with Down are happy with their lives and Dutch Research Organization TNO reports that 8 out of 10 parents, and 9 out of 10 siblings in the Netherlands say Down syndrome has enriched family life.)
The Dutch Health council said in a report that they expect that by introducing NIPT more women will choose to undergo screening.
The ethical concerns raised by Downpride a widely implemented NIPT would negatively affect the lives of people with Down syndrome and their families have been largely ignored.
The Stop Discriminating Down Campaign calls upon the Netherlands to stop discriminating against people on the basis of their genetic predisposition in a written contribution that is submitted to the United Nations under their Universal Periodic Review.