Genetic screening is not about health; it is about eliminating groups of people

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Unwanted Children

When the war was over it became evident that more than a quarter of a million people with disabilities had vanished: 25% were children. People could not comprehend it. Why had no-one tried to stop this holocaust?

Today we rely on prenatal genetic screening to make our selections in private. However, the effect on society is the same.

Exposure and inclusion

In pre-Hitler Germany, community schools integrated children with a variety of learning and developmental problems long before it became standard policy in North America. The first school for deaf children was established in Leipzig in 1778. The first school for blind children was established near Berlin in 1806. Pioneers in education and human rights believed their problems were caused by social deprivation, not by their genetics. Their goal was to help children with disabilities lead rewarding lives.

People with Down syndrome and other disabilities are no longer housed in institutions because we know family life is far more superior. Pioneers taught us that problems, that were once attributed to genetics, were mainly caused by low expectations. In recent years we have seen people with Down syndrome being elected as councilor, walk the fashion runway, own a restaurant, give Zumba instruction, perform in a tv-show, compete in professional sports, get a college diploma and a university degree.

These brave men and women became who they are today not because of Down syndrome and not despite of it. They were able to succeed in life because they were included, encouraged and loved. Because their parents, friends and teachers saw their potential and believed in their capability. Today, most people with Down syndrome live healthy and rewarding lives.

The Illusion of a Perfect World

During the Nazi-era there was a climate of social chaos and economic depression. By focusing on selected groups of people, the Nazi’s were able to establish a system of fear and control. The progressive German model of an inclusive, diverse society changed into a fictitious ‘perfect’ society. Childhood was now cast in the illusion of “perfection”. Children with disabilities did not meet the biological criteria of perfection. Under the pretense of ‘choice’ they were methodically removed from their homes and communities and isolated in institutions. The voices of those who recognized what happened, were ignored.

I fear that the arduous steps that were made during the last 70 years towards an equal, more inclusive society are being destroyed. Driven by commercial and political priorities, the marketing of the illusion of perfect children and a perfect life has intensified once again in recent years.

The Danish media reports that Denmark will be a Down syndrome-free and perfect society within 30 years. When professor Galjaard, geneticist and former member UNESCO bioethics committee was asked: ‘do you think Down syndrome should disappear from society?’ he replied ‘oh, yes, that was one of my motivations.’ 

The Scientific Excuse

The Nazi bio-genetic concept included social usefulness: the ability to work. Ultimately this led to the division of the population into two categories; those “who had genetic value” and those “who did not”. They used bio-genetic science to justify policies that accommodated the disappearance of those who were believed “unworthy of life”.

The bio-genetic theory attributed developmental problems solely on the genetic make-up of the children. Even social problems that were now becoming evident in the -underfunded, overcrowded institutions- were blamed on ‘genetic flaws’ rather than a failing social welfare system.

A small tightly knit group of university professors, scientists and physicians dominated university and hospital departments. They wrote and reviewed articles for one another’s journals. They singled out children with cerebral palsy, Down syndrome, or blindness for “mercy killing”. Under conditions of absolute power, careerism, greed, and arrogance they planned and administered the disappearance of unwanted individuals.  Even infants with disabilities were routinely targeted. Despite the advice of older psychiatrists who cautioned that diagnoses of severity made in infancy were questionable.

The genetic screening excuse today:

When the human genome was mapped, a small select International group of scientists worked on the development of (prenatal) dna-screening technology. This research was sponsored by pharmaceutical companies, governments and health-insurers. This tightly knit group writes articles and participate in (joint) studies often funded by pharmaceutical companies. They are board-members in (semi) governmental bodies charged with the implementation and research regarding NIPT. They identified the goal, made the agenda and identified obstacles in public opinion.

In 2011 the NIPT (Non Invasive Prenatal Test) was commercially introduced. This DNA test can potentially, analyze the entire genome of the unborn child in early pregnancy from a single drop of blood taken from the mother. A select group of academics and policymakers determines the scope of the NIPT. Ultimately they divide the population into two categories: “those who are targeted for screening and selection” and “those who are not”.

Less than 5 years after the introduction of the NIPT, an estimated quarter of the world’s pregnancies is tested for genetic variations like Down syndrome. The Dutch Health council recently advised the implementation of the NIPT into it’s public health-care system. Other countries have announced similar steps.

A test cannot predict health, development or happiness based solely on genes. There is consensus that this is the result of a complex interaction of predisposition and social and environmental factors. Screening for Down syndrome does not offer health-benefits; it increases the number of selective terminations. This is not a goal of public health. To justify a policy that doesn’t fit the goal of public health, disability-screening is marketed as a ‘reproductive choice’ to escape ‘serious and prolonged suffering’. Down syndrome and several other disabilities are singled out for “merci-abortion”.

Propaganda to Shape Public Opinion

Consistent with all other forms of Nazi persecution, the campaign to eliminate people with disabilities was intense. Films and posters portrayed disabled as helpless, dependent persons who could only survive at the expense of non-disabled or healthy people.

On the other hand, propaganda offered the solution by sending children and adults with disabilities to institutions and work-camps on a ‘voluntary’ basis.

Social Marketing today:

Despite research among a large population that shows that most families with Down syndrome rate life better than the average population, medical literature continues to describe Down syndrome as a ‘risk causing serious suffering’. Information intended to inform parents-to-be, cultivates fear by being negative, exaggerated and steering. This example was found on a Dutch website:“Most children with Down syndrome are withdrawn, shy, have difficulties making eye contact and relating to others, are quickly panicked and have difficulty understanding a conversation.”

Professor Dick Oepkes, head of the Dutch NIPT consortium, gives scientific flair to his personal bias about both parents-to-be and Down syndrome. In a study sponsored by Roche/Ariosa, (developer of the Harmony NIPT used in the Dutch trial) he claims that parents have a misunderstanding about the “severity of the disease” based on: “exceptional cases of smiling young children in music bands and on tv-shows, some who are likely mosaics.”

On the other hand women’s magazines offer the solution by hailing the new test as the holy grail to women’s reproductive freedom. Many of these articles appear to be paid advertising. Furthermore, mainstream media focuses on the individual choice only when discussing selective abortion.  Yet, commercial and political priorities have lead to state health-policies that accommodate the deliberate eradication of children with disabilities.

As if to persuade the public of the necessity of eliminating people with genetic variations, newspaper headlines scream: “A child with Down syndrome costs 1 to 2 million Euros” and “If we screen out those who are sick in advance, we can accommodate and care for others”.

The Individual Choice

Nazi authorities viewed comprehensive schools, special classes, and treatment programs as a waste of money. They destroyed one of the finest, most comprehensive system of education at the time. Because many schools, groups and individuals were dependent on government funding, they were unable to resist shifting politics.

Families with children with disabilities became more and more deprived of family allowances and inclusive programs. Consequently an increasing number of families could no longer provide the care their children required. As a result they committed their children in the belief that they would be better served in an institution than at home. Parents who refused were coerced and cajoled into institutionalization of their children.

To justify “mercy-killings”, official reports exaggerated the degree of their child’s disability once the child was institutionalized:

“An eleven year old boy whose parents were persuaded to commit him because his mother could no longer pick him up to bathe him, was an avid reader and spoke fluently. He was able to feed himself, but the reports his parents received described him as totally helpless and severely feeble-minded.”

Many, many parents questioned the reports they received. Desperate parents were frustrated in their efforts to bring their children home. When they first arrived at the institution to take their child home, they were told that their child had been moved to another place. Most parents could not keep track of their children. They were never informed that their child was dying until death was imminent.

Today:

Social, therapeutic and educational services for disabled and their families were reduced in recent years in the Netherlands and several other countries. As a result an estimated 15,000 children with a variety of learning and developmental needs have been ‘released’ from education and are referred to as ‘thuiszitters‘ (stay-at-home children). Special education schools and day-centres for children with special needs experienced several budget cuts. Finally some had to shut their doors due to insufficient funding. Class sizes on average, are growing.

While the social welfare system is underfunded and failing in the Netherlands, the government expanded their existing prenatal screening program with the expensive NIPT. The question ‘have you been tested?’ is often heard among pregnant women.  Furthermore, the question that usually follows a disability diagnosis is ‘do you want to abort your pregnancy’. In Denmark prenatal testing for disabilities is automatically scheduled when women first arrive at their doctor’s office to confirm their pregnancy.  Although formally offered as a choice, parents report they are coerced and cajoled into screening and abortion of their children.

“Had the results for Down syndrome at 38 weeks over the phone, and was offered a termination the following day.”

“She kept repeating how our lives would be ruined by having a baby with Down syndrome and that we should schedule an abortion.”

These parents-to-be questioned the negative, steering information they were given. Fortunately these parents were able to resist pressure and now report they would neither change or want to miss their child for the world. Downpride collected these and other personal testimonies in their Blackbook Downs.

The Children Know

Children who were still alive knew about the killings. A nurse testified to the awareness of the children on her ward. 

“It was a general rumor. The children played a coffin game. We were astonished that the children understood.”

Today:

Many people with Down syndrome and other disabilities know their cohort is targeted for elimination. Self-advocates talk about their good quality of life. They express their sadness that people like themselves are being eradicated for having Down syndrome. They hold banners during protests and are interviewed in radio en tv-shows. According to human rights laws they are equal human beings but their voices are ignored. Slowly their voices are silenced.

What Happens Next?

The facts cannot be denied: 99% of people with Down syndrome say they are happy with their lives. So in well-informed decision making, these positive real life experiences should be reflected in the (small) number of terminations. However, the opposite is seen: selective termination rates are over 90%. This reflects fear, a failing social and educational system, steering information, women’s suppression, prejudice, questionable science and commercial and political priorities in shaping health-policies. It is only a matter of time that people who are in charge, as well as people who are witness, to this state-sponsored genocide will be called to trial.

“Margaret’s old pediatrician tells me that years ago he used to have a steady stream of patients with Down syndrome. Not anymore. Where did they go, I wonder. On the west side of L.A., they aren’t being born anymore, he says.” Washington Post, the abortion debate no-one wants to have, Patricia E. Bauer

Finally, by separating genetic science from humanity we victimize our (unborn) children. Vulnerability is not caused by disability; it is caused by every act that devalues human life. We are all vulnerable.

 

Many facts that appear in this article and more information about the disappearance of unwanted children during the Nazi period can be found in: http://www.holocaust-trc.org/wp-content/uploads/2013/02/unwanted.pdf

About the author:

Renate Lindeman is a disability activist, mother of two children with Down syndrome and representative for Saving Down syndrome, spokesperson for Downpride and co-initiator of Stop Discriminating Down. She raises awareness how genetic science is used to create fear and discriminate.  She criticizes a system where political and commercial priorities shape health-policies. Policies that accommodate the deliberate, systematic eradication of people with Down syndrome and other disabilities.

 

Renate Lindeman
Woman, wife, mother. Three children: two have Down syndrome and one doesn't. In love with my husband, kids and life, critical, not a sheep, health, diversity. Spokesperson for Downpride and representative for Saving Down syndrome. Everyone is different and equal.
  • Rachel McKenzie

    Excellent article. People need to wake up !

  • Ineedacoffee

    Its the womans choice is she is willing to be a mother of a downs child
    Not every family can accommodate the challages that brings, from financial, physical and emotional challenges and thats ok

    Oh and not every downs case is like the pictures, some are violent, completely non verbal and need 24/7 care and you seem to disregard what happens when the parents die and now a young adult needs full time care, someone who has little control over emotion and is liable to lash out and harm carers
    When it comes to genetic testing women need to think not just of the baby but the adult the will become and make sure they have plans in place to deal with that

    • It is a woman’s choice to be pregnant; the rest is prenatal discrimination. A persons development, with and without Down syndrome, cannot be predicted by any test. It is highly dependent on lifestyle, upbringing and other environmental factors. There are many people who cause great harm who do not have Down syndrome. Many work in multinationals like Monsanto or Bayer, big pharma and big government. Suggesting killing unborn babies based on a little genetic information is like suggesting to kill babies based on race, color, gender, etc. People with Down syndrome has always existed and have never caused major problems in society. I suggest we leave people in their inherent (genetic) value and focus on preventing illness by cleaning up pollution and restricting companies that poison our food, water, air and land.

      • Ineedacoffee

        You seem to forget that someone has to care for the child once born
        Special needs, many just are not up to it and cant afford it
        Also when the child of high hands on needs, like can never care for themselves, who will care for them when parents die
        Downs isnt a little genetic condition, how naive
        Every woman has a right to determine what she does in life, that includes remaining pregnant, deciding to abort if need be and if she is up to being a special needs parent
        Can clean planet all ya want, still wont change the fact genetic abnormalities will still happen