While watching a majestic 10,000-year old iceberg float past the horizon, I dip my foot in the water. I retract when pins and needles shoot up my leg. But the frigid water of the North Atlantic doesn’t deter my kids. They quickly undress and splash about.
Imagine. As they bounce through life, wild and free, many view two of my children as tragic mistakes. Because they have Down syndrome, they fall into the category of avoidable human suffering. A drain on society. Less than human.
It hurts to know that individuals judge the lives of people that I love, not worth living. It is unspeakably painful to see governments and medical professionals reinforce this myth.
It all started last century. In 1969 the American Society of Human Genetics invited Professor Jerome Lejeune to America. He received the highest distinction in genetics for discovering the genetic cause of Down syndrome. Some even spoke of a Nobel prize. The drama was that his discovery would lead to a medical holocaust. After months of reflection Lejeune decided to use the occasion to speak out in defense of “his patients”.
In his soft, very precise voice he said: “For thousands of years, medicine has striven to fight for life and health against disease and death. Any reversal of this order would entirely change medicine itself.
The scientific, medical and political elite ostracized Lejeune. His research funds were withdrawn.
People with Down syndrome become extinct
While Professor Lejeune (dubbed the father of modern genetics) sacrificed his career to speaking out for ‘his patients,’ another Professor (dubbed father of prenatal diagnostics) sacrificed ‘his patients’ to propel his career.
Indeed, when Dutch geneticist and former member of the Unesco Bioethics Committee Professor Hans Galjaard was asked in a 2014 interview on DNA-screening: ‘If it were made possible, do you think Down syndrome should disappear from society?’ he replied, ‘Yes, that was one of my motivations.’
Since the 1970’s National health systems, insurers, and pharmaceutical industry invested huge sums of money to develop new technology to track down children with Down syndrome to enable their selection. As a result of Denmark and China recently reported that people with Down syndrome would become ‘extinct’ in the near future. Other countries (including the USA, the Netherlands, the UK, etc.) announced the expansion of existing prenatal screening programs.
To kill or not to kill that is the question
Genetic prenatal screening is slickly marketed as ‘individual choice’. But freedom to choose means that a pregnant woman can choose, at her request, for which conditions she wants to screen during her pregnancy and what she does with the result. On the contrary; the routine offer of screening and termination for a condition (Down syndrome) determined by others qualifies as the obligation to choose.
We should not fear a genetic variation like Down syndrome. The real danger are voices that claim our future children need to be tested before it is decided who is ‘worthy of life.’
The state has no business singling out a group for prenatal selection, simply because they share distinct genetic traits. This is not health-care. It is a cover-up to hide an unacceptable eugenic practice.
I’m sad that not everyone is filled with awe by the unconditional laughter of children playing games. I’m sad that adults impose their personal bias and limited ideas about perfection upon a future generation. I’m saddened that people so eagerly believe the blatant lie that erasing part of our species creates a better future.
Icebergs have existed for over 10,000 years; so have people with Down syndrome. Once the holocaust ends; children with Down syndrome will emerge to join the rest of humanity with the same frequency once again.