Dutch Minister of Health: if National screening program leads to disappearance of people with Down syndrome, society has to accept that

Dutch Minister of Health: if National screening program leads to disappearance of people with Down syndrome, society has to accept that
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Health officials decide which people are expendable in Dutch society

The introduction of standard prenatal screening into public healthcare has lead to the (near) elimination of Down syndrome in some countries. In Iceland, for a number of years, hundred percent (100%) of babies diagnosed with Down syndrome were aborted. In Denmark this number is 98 percent. In 2017 the Netherlands will make NIPT (Non Invasive Prenatal Testing) available to all Dutch pregnant women. NIPT can detect a range of chromosomal and genetic variations in the unborn child simply by testing the blood of the mother. Last week members of the opposition party SGP asked the Dutch Minister of Health, Mrs. Schippers, if she planned to take any measures to prevent the Danish and Icelandic scenario from happening in the Netherlands. Mrs. Schippers answered: “If freedom of choice results in a situation that nearly no children with Down syndrome are being born, society should accept that”. She said withholding information from parents about the health of their future children is‘undesirable’ and that participation in the National population screening program is an individual decision.

While participation in the screening program may be voluntary; Dutch women are not free to choose for which conditions they want to screen their pregnancy. NIPT can potentially detect hundreds of conditions, but a small group of experts have determined Down syndrome to be it's single primary goal. In fact, ‘analysis filters’ are used to prevent NIPT from 'accidentally' detecting conditions that fall outside the determined scope of NIPT. These so-called ancillary findings are purposely withheld from parents. So much for ‘not withholding information from parents’.

The focus on Down syndrome is to keep screening intelligible and cost efficient

Science platform 'Nemo' reports that the reasons for offering the very limited screening options include costs (of the screening and selection program), to keep screening options 'intelligible' for parents and to ensure the right to an open future for potential children. A right that is obviously denied to children with Down syndrome.

With selective abortion for conditions outside the scope of screening being discouraged, gender-selection is banned in the Netherlands. Dutch Health officials have called sex-selective abortion discriminatory and an 'undesirable use of NIPT'. Dutch politicians have implemented measures to prevent this practice.

The existence of a group of people is made entirely dependent upon the value judgment of others

Minister Schippers asks society to respect those who judge a life with Down syndrome unworthy. But what about those who find themselves on the other side, those who are judged by their genetic disposition? People with Down contribute to our communities and are celebrated by their families. They should not be reduced to disposable humans. They deserve respect too.

I happen to have two kids with Down syndrome. Their continued existence as a group is made entirely dependent upon the value judgment of others. If a government encourages the idea that certain people should be considered unworthy of life, that message doesn’t magically disappear at the time of birth. That negative stigmatization continues after birth and takes root in all aspects of society. The discussion in a morally and socially responsible society should not be about how to eradicate a group and ‘legally’ get away with it. It should be about how to create equality and better opportunities for everyone.

Many people with Down syndrome live happy and healthy lives. NIPT says nothing about the quality of life that can be expected for a baby born Down syndrome today. For a great part this depends upon factors like education, lifestyle, healthcare, and the unconditional love of a family. Ironically, the science that Dutch Health officials uses to defend their publicly funded elimination program proves that 99% of people with Down syndrome are happy with their lives.

Down syndrome......a naturally occurring part of the human condition

It is time to stop portraying Down syndrome as an illness or suffering that should be prevented by a National population screening program. Down syndrome is a naturally occurring chromosome arrangement that has always been part of the human condition.....naturally occurring. Not an abnormality. Not a disorder. Not a “What's wrong with him?” Not a 90% abortion rate.

Renate Lindeman is the spokesperson for Downpride and representative of Saving Down syndrome. Together with Lejeune Foundation they have taken the Dutch screening policy to the UN, calling prenatal screening to enable selective abortion discriminatory.

Please support equality and the right to an open future for all by signing the petition Stop Discriminating Down

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