The NIPT reimbursed in the Netherlands, a choice of prenatal exclusion


On September 20th, the Dutch Minister for Health announced that the NIPT would be available for all pregnant women from April 1st 2017 and mostly reimbursed by social security [2]. This decision is based on a technical report of the health council, that compared NIPT to older and/or more invasive prenatal testing methods.

 

Renate Lindeman, president of the Downpride collective, laments that the promised ethical debate has been reported, and delayed until December 2016. A petition, launched by its collective in the spring of 2015, had collected in less that a year the 40 000 signatures necessary to constitute a citizen initiative examined in parliament. However, there was no debate and the actions led by the collective were ignored.

 

Other associations have expressed their concern, but are finding it difficult to get anyone to listen

  • Blackbook Downsyndrome has brought together a series of testimonies from parents of children living with Down syndrome: the families were not offered proper help or believe they were pressurized into prenatal testing or abortion. Their testimony shows how the initial fears, when the diagnosis is first given, do not reflect reality and the joy they are feeling today. Blackbook Downsyndrome was presented to the Dutch Ministry for health in February 2016, as well as on national national television.
  • A billboard campaign was launched on September 27th, in front of the Parliament, to heighten public awareness concerning the negative effects of Dutch prenatal testing on people living with Down syndrome and their families.

 

Renate Lindeman explains: “ we fear that NIPT focalized on detecting Down syndrome becomes a norm concerning prenatal care. Already the most frequent questions asked to a mother whose child has Down syndrome is: Could you not do the testing? Some of the mothers, I included, got together on several occasions to ask: ‘Why did you choose to have a child with Down syndrome?’ And even ‘Why didn’t you choose to abort?’. Thus, having a child with Down syndrome would be the result of a personnel choice rather than originating from nature”

 

It is a dangerous way of thinking: “We see more and more comments on social media criticising the fact of having a child that requires expensive care. If is a personal ‘choice’, then why should society have to pay?” The media spreads this opinion. But “investments in research, development and the carrying out of prenatal testing with NIPT also costs hundreds of thousands of euros”, answers Renate Lindeman, and “on the other hand, very few programmes exist for the improvement of the quality of life of people living with Down syndrome. It is a clear message from society who has chosen prenatal exclusion as the solution”.

 

[1] Non invasif prenatal testing

[2] The total cost of NIPT is 460€, the women pay 175€ and the 285€ left are paid back by the government.