Office of the United Nations High Commissioner for Human Rights (OHCHR)

Palais des Nations

CH-1211 Geneva 10, Switzerland

November 9th, 2015

Re.: Appeal to the United Nations to stop discriminatory use of prenatal genetic screening aimed at eradication of people with Down syndrome and other groups.

Dear Sir, Madam,

‘A child with Down syndrome costs 1 to 2 million Euros’ a Dutch newspaper reported last month. When I contacted the editor he said he didn’t understand the commotion: he fact-checked a remark made by Patrick Willems, pediatrician and CEO of a Belgian lab (Gendia) that offers the Harmony Nip-test for Down syndrome on the internet. “Preventing the birth of 50 babies with Down syndrome will offset the costs of fully implementing the Nipt into Dutch public healthcare,” he said.

While for most, Down-screening is a far-flung event, considering the huge financial stakes and technological advancements ,the system of utilitarianism will not stop at Down syndrome. Within the not too distant future other groups will be identified: risk for autism, schizophrenia, low IQ? Children with these conditions also easily cost 1 to 2 million euros.

History repeats itself. The extermination of ‘unwanted’ persons from society happens sooner and is slickly marketed as ‘individual choice’. The effect on society is the same. Decisions are made by a handful of ‘experts’ behind closed doors with dubious (financial) agenda’s. People who –on the bases of their expertise- reinforce the incorrect assumption that Down syndrome is a ‘grave’ condition causing suffering.

Genetic screening disguised as health-care is not about offering choices; a former Unesco member and world-renowned geneticist confirmed the real goal of Down-screening is money.

Contradiction with Unesco

Well-oiled marketing machines produce pseudo-scientific claims like: “if you put 200% effort in [a child with Down syndrome] you get 10% in return,” by Ko van Wouwe, pediatrician at TNO, a Dutch organization for applied scientific research. Only a year ago British author and biologist Richard Dawkins said parents-to-be are morally obliged to ‘abort and try again’ when expecting a baby with Down syndrome.

The strange situation exists that parents have to ‘defend’ their children’s right to exist on (social) media and that life with Down syndrome is not as ‘terrible’ as academics make it out to be.

This comes in a time where Netherlands, the UK and other countries have plans to significantly expand NIPT (non-invasive prenatal testing) under national screening programmes and Down syndrome is singled out as the prime target. Termination rates for Down syndrome vary from an average of 67% in the US to 98% in Europe, as the Copenhagen Post reported recently. In response to the rapid advancements in genetics, Unesco issued a new report on October 2nd warning that “prevention focused on reducing care costs for people with Down syndrome or other disabilities, cannot be the goal of such screening”.

Screening is about reducing healthcare costs

According to former member of the Unesco Bioethics Committee and professor human genetics, Hans Galjaard, screening IS about reducing costs:

“When I wrote my first Dutch paper on prenatal diagnosis, the insurers visited me because they saw the preventive effect. They thought, “Ah, wait a moment; here we are going to prevent suffering and a long period of high costs thanks to prenatal diagnosis and abortion.” Called the ‘Dutch father of prenatal diagnostics’ he was at the cradle of developing and implementing screening technology in the Netherlands. In a 2014 radio interview about the Nipt he said Down syndrome has to disappear from society.

Mr. Galjaard also had advisory activities in countries like Cuba and China on behalf of the United Nations: “because of the one child family policy, the government realised that people would be very upset when they have a child with a congenital malformation or genetic disease, and were not allowed to have a second pregnancy.”

Screening does not offer any treatment options for Down syndrome but enables selective abortion. This is not considered ‘preventive health-care’ in the Netherlands. Therefor the Dutch government granted a special permit to carry out the Nipt-study on the assumption that Down syndrome is a ‘grave’ condition causing ‘suffering’.

While there are many subjective ‘opinions’ on what a serious condition and grave suffering constitutes, individual markers like IQ, life-expectancy and other life-limiting factors associated with Down syndrome, are not considered ‘serious’ by usual medical definitions.

‘Screening aimed at prenatal selection DS is presented as a medical/ethical issue’

Years ago it was thought that people with Down syndrome were limited by their DNA. Today it seems clear they were mostly limited by low expectations, poor medical care and segregation. Buoyed by social and medical reforms a baby born with Down syndrome today can look forward to a rich, fulfilling and increasingly independent life of around 60 years, complete with friends, college education and a job.

What’s more, research by Dr. Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital, has shown that people with Down syndrome do not feel they suffer but have an above average appreciation for life, not dependent on their individual functional skills. Pablo Pineda, the first person with Down Syndrome in Europe to obtain a major degree from a regular university, said having Down syndrome did not limit him from conducting a regular life: “For me it is a personal characteristic. I am fine and healthy. We must not be treated as sick.”

To present screening [to enable selection] for a condition that is highly compatible with life and does not entail serious suffering solely as a medical and ethical issue is therefor wrong. First and foremost, screening and selection for Down syndrome should be treated as a human rights issue.

Termination rates for Down syndrome around 100 percent

In Iceland, Down-screening was implemented in 2000 as part of their National screening program. Formally offered as a choice, screening has become so accepted that in practice all expectant parents undergo screening despite the small fee they have to pay out of their own pocket. According to statistics given in Icelandic parliament last winter, all pregnancies during the period 2008-2012, in which Down-Syndrome was diagnosed, were terminated – 100 percent. In Denmark, last year, 98 percent of pregnant women who were revealed to be carrying an unborn child with DS chose to have an abortion. Introducing the more accurate Nipt will likely lead to Down-free societies.

In the Netherlands the termination rate was between 74% and 94% after Down syndrome was diagnosed during the past 23 years. Unlike Iceland, the Netherlands traditionally had a low uptake of screening. The Dutch Health council however expects women, who feel invasive testing is too risky, will increasingly choose the Nipt. A higher uptake will mean an increase of the number of pregnancies that are aborted for reason of Down syndrome. The Health council refers to this increase as a ‘moral advantage’ in it’s report: Nipt, dynamics and ethics of prenatal screening. This means that by introducing the Nipt into Dutch healthcare the government deliberately promotes the systematic elimination of a group who shares distinct physical and genetic traits. Professor Galjaard said: “After acceptance of this test, people will claim their right to it.”

Directors have conflict of interests

Dr. Oepkes is chair of the Dutch Nipt-consortium, who carries out ‘objective’ research on behalf of the Dutch Public Healthcare system. He wears several hats however. He also participated in studies on the Nipt paid by the developer of the Harmony-test that is used in the Dutch study: Ariosa. This is a conflict of interest.

This is proven by the website of the Nipt-consortium. Pregnant women who are not part of the research-study are referred to laboratories like Gendia. This is illegal and makes the ethical framework ‘balanced information to enable an informed choice’, in which the Nipt is supposed to be offered a farce. Even after repeated questions in parliament by the opposition party, this practice continues.

Choice becomes responsibility

More members of the Nipt-consortium wear several hats when representing interests of both the Dutch public, the Dutch government and those of Roche (who acquired Ariosa in 2015). There are other players on this profitable market. It makes you wonder why the Dutch government is not investigating their tests? Or is that not necessary when the top of the consortium is sponsored by the supplier?

By encouraging prenatal selection, the Dutch government helps build a mentality that society should not invest in these children. This mentality has already started: on one hand inclusion and equality in society is an ongoing matter of grave concern, on the other, governments and industry are pouring hundreds of millions Euros into screening programs. A sign that society has found the ‘solution’ in the prenatal exclusion of people with Down syndrome and other disabilities. Women who ‘choose’ to have a child with Down syndrome are increasingly viewed by society as ‘irresponsible’. This undermines the social position of people with Down syndrome and their families in society even more.

Outside International human rights order

Human rights law, designed to protect humanity from atrocities such as the deliberate and systematic extermination of a group of people who share distinct physical and genetic traits, is left out of the decision-making process. Their representatives: human rights lawyers, missing from commissions and other groups involved with decisions about Nipt.

Earlier this year the Dutch government told parliament it will not ratify the ‘Convention on human rights and biomedicine’. This convention was created in 1997 and aims to protect human rights and dignity in relation to biomedicine and health science. By not ratifying this convention the Netherlands places itself outside the International human rights order.

‘Women are always ‘guilty’, either of killing her unborn child or burdening society’

The Dutch government fails her obligation in protecting the rights of both people with Down syndrome and women. A woman’s right to choose is highly valued under Dutch law but no person shall be “subjected to discrimination based on genetic characteristics and individuals should be respected in their uniqueness and diversity”, (as is enshrined in articles 6 and 2 of the UDHGHR). Where Dutch healthcare (rightfully) disapproves a woman’s ‘right to choose’ when it comes to gender-selection, it actively promotes selection for Down syndrome. This stigmatizes people with Down syndrome and increases social pressure on women to terminate pregnancy.

Selective abortion is slickly marketed as a woman’s reproductive right, however psychological damage in women following (selective) abortion remains undiscussable luggage. Norwegian research shows selective abortion can “bring women at the limit of what a person can bear” while a Finnish study reports that the suicide rate among women who had undergone an abortion were a whopping six times higher compared to women who gave birth.

Un-informed choice

This is a known fact within the Nipt-consortium who, by the way, consists mostly of men. Only one year into the pilot study, the Chair pleaded for a swift implementation of the Nipt as a first line screening program to prevent women “having to decide to terminate pregnancy after they have felt the fetus move”. Either way; women are always ‘guilty’, either of killing her unborn child or burdening society.

A grassroots parent initiative called ‘Blackbook Downsyndrome’ is collecting and documenting directive counselling during the screening process. Among reported personal experiences are: feeling pressurized to test or abort a pregnancy. One mother reported she was asked moments before being induced: “Would you like us to try our best to deliver your baby alive? It is a very difficult life with Down syndrome.” Apart from personal experiences ‘Blackbook’ collects biased and negative information that is abundantly found in medical and non-medical literature and on the web.

Anomalies need to be erased

While academics like Professor Galjaard, who advise governments on their public health policies , view Down syndrome as an anomaly that needs to be erased and governments want to reduce care-costs, it does not explain why a global industry is dedicated to eradicate Down syndrome. They build on a decennia old ‘tradition’ where screening for Down syndrome has become normalized. Instead of risky, invasive test-methods they now offer safe, effective and non-invasive alternatives called ‘Harmony’, ‘Tranquility’ and ‘MaterniT21’. Advertorials on the Nipt, slickly marketing ‘piece of mind’ appeared in women’s magazines even before the Nipt-study started in the Netherlands. Why?

Within several years it is expected that the Nipt moves beyond detecting trisomy’s and will effectively detect smaller genetic variations or risks for early heart-disease, cancer or schizophrenia, etc. Hoffman-Roche, a pharmaceutical giant, entered the genetic prenatal testing market when it announced in December 2014 it acquired Ariosa, who develops the Harmony prenatal test.

Roche previously tried to enter the market of genotyping humans back in 1998 when they announced a partnership with DeCODE genetics, a biopharmaceutical company based in Iceland that was founded to identify human genes associated with common diseases using population studies. The goal was to apply the gained knowledge to guide the development of candidate drugs. Their research focused on the discovery of genes that predispose people to the development of schizophrenia, cancer, cardiovascular and other diseases. DeCODE’s approach to identifying genes was very controversial, and prompted national and international criticism. In November 2009 DeCODE filed for bankruptcy in a US court.

Nipt ‘resolves’ resistance against genotyping humans

Genotyping still-healthy people was already identified as a major obstacle for the new industry of ‘personalized medicine’ when it was still only theoretical. People will, essentially, get a dna-passport (a sort of bar-code) and may prefer not to know. Others (rightfully) fear this knowledge will lead to genetic discrimination. This hurdle appears to be taken if a Nip-test will be implemented as a first line national screening program. Once full acceptance of the Nipt for Down syndrome is achieved, the scope of testing will change and new patients will be identified before birth. This will be marketed and offered as a ‘free choice’, of course. The Down-test may turn out to be merely the hook for pharmaceutical industry to hang their ‘tailor-made drugs-hat’ on.

“The Market of Personalized Medicine to Grow 11 Percent Annually”, says PricewaterhouseCoopers in 2009. The market’s current estimated worth is 290 billion dollars.

There is also an emotional pitch

This was the rational pitch, now the emotional one. If you asked April and Hazel what life is like (with Down syndrome), they would probably give you their undivided attention for a few moments. Hazel would likely start telling you about her friends in school, her little brother and best friend Olav, and her favourite foods and activities. The story might get increasingly hard to follow and probably end in laughter and a high five. April will gaze at you solemnly from behind her glasses. Searching her brain for the proper words to express her feelings, she will be pensive for a while as in meditation. You will start to notice her delicate features and the freckles on her cheeks and tiny nose. Then, as she wraps her small arms around your shoulders, a smile will radiate like a ray of sunshine from behind that earnest look.

Our lives are not defined by the presence of an extra chromosome. While the road to fluent speech, flawless writing, and coordinated bicycling is often filled with obstacles larger than Mount Everest, planting our flag on top makes it all the more worthwhile. Of course, like any kid, they can drive a mom insane at times. Hazel can be stubborn as a mule and April can take an hour to get dressed. Above all, they have the ability to simply accept their flaws and those of others without judgment and still fully enjoy life. In my opinion, that makes my children perfect. Had I chosen abortion at the time, that would’ve said more about my own shortcomings than those of my children. I feel society is failing all people with Down syndrome by routinely offering screening to enable selective abortion.

Bertina

Sieb has Down syndrome, his twin has not. Sieb has the uncanny ability to comfort his brother when he’s upset while his twin helps Sieb, and waits for him. They complement each-other and are better persons for it. When I kiss Sieb on his forehead at night I silently apologize for the people who believe he shouldn’t be alive. It hurts to know people are blinded by a false promise of perfect children. It is horrendous to know that governments reinforce this perception by promoting prenatal selection, while they should be reinforcing respect for each-others characteristics and dignity.

Tefke

Olivier is my first child. I was not prepared for his diagnosis of Down syndrome and at first held on to experts’ opinions. But Olivier took me by the hand and showed me in his way that words don’t matter. He doesn’t care if my hair is a mess and that I burnt the potatoes. He takes me as I am, strokes my cheek and says ‘aaw, you sweet’. This little boy doesn’t need words to make people feel wanted. Everybody can say ‘I love you’ and not mean it. Only a few cannot say it but truly express it.

Extermination of unwanted persons now happens under the pretense of ‘choice’

History repeats itself. The extermination of ‘unwanted’ persons from society happens sooner and is slickly marketed as ‘individual choice’. The effect on society is the same. Decisions are made by a handful of ‘experts’ behind closed doors with dubious (financial) agenda’s. People who –on the bases of their expertise- reinforce the incorrect assumption that Down syndrome is a ‘grave’ condition causing suffering.

In 1998, UNESCO adopted a UN declaration that stated “that the human genome is part of the heritage of humanity; that the dignity and human rights of every individual should be respected, regardless of his or her genetic characteristics; and that genetic determinism should be rejected, recognizing that the genome, being subject to mutations through evolution, contains ‘potentialities that are expressed differently according to each individual’s natural and social environment.”

A former Unesco member, world-renowned geneticist and advisor of governments and health-insurers confirmed the real goal of Down-screening is money. Unesco has identified in it’s latest reflection this is discriminatory use of screening. I call upon the United Nations to hold their individual governments responsible and act on this matter immediately.

On behalf of Downpride, a grassroots parent group

email: Downpride@mail.com

Renate Lindeman, spokesperson Downpride and representative of Saving Down syndrome

Bertina Slager, founder Down syndrome Tips community

Tefke Dannijs, Zó is Down

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