March 30, 2017
Why it is time to start talking about eugenics
He hugged me. Tight. He always noticed when someone was sad. He’d look at me with his blue almond-shaped eyes, and it felt as though I was the only person in the world. Danny is special. He even has his own special day.
On March 21st we celebrated World Down Syndrome Day. A day to show the world the talents of our loved ones with Downs. In 2017 however, March 21st has become a day of mourning. DS is becoming a death sentence.
The ongoing debate surrounding screening and abortion has become intense. As of 2018, the NHS will offer the “non-invasive prenatal test” (NIPT). This blood test gives expectant mothers supposedly a 99% indication of the Down’s status of their baby.
I agree that women should have access to available information about their unborn child’s health. Screening is not the problem. It’s the screening out that gives me shivers, and given the statistics, there is no denying that the use has become eugenic.
Already in the UK, 90% of mothers terminate following such a diagnosis. In Denmark, the rate is 98%, with a government objective of zero DS births by 2020. Since the introduction of NIPT in Iceland, there has been a 100% abortion rate. In China, the end of DS is predicted. Despite this shocking pattern, countries including the UK, the Netherlands, and France are in the process of expanding routine prenatal genetic screening into public healthcare.
Why then are we so proud to claim that the disabled have equal dignity and value to the non-disabled? In the UK anyone can abort a child up to 24 weeks, but a child with Downs can be aborted right up until birth. How on earth is this considered to be “equal treatment”? Lord Shinkwin, in his recent Private Members Bill respectfully invited us to imagine the outcry if the same were applied to skin colour. It would cause outrage. And rightly so!
The irony is that all this focus on screening is happening when people with DS are achieving more than ever before. Years ago, people with DS were housed in institutions. Today, they attend school, work, vote, and have meaningful relationships. Their life expectancy has increased dramatically, from 25 in 1983 to 60 today.
Preventing the birth of DS babies is big business. Each DS baby screened brings huge financial profits to big pharma. The availability of this new test under routine prenatal care fosters a problematic mentality: these babies are better off dead. The tests were privately introduced in 2011. Ever since funding for research into Down Syndrome has decreased.
Indeed, illness is costly. A so-called burden to society. But who are we to tag a financial price to a life? Accepting and caring for the most vulnerable is precisely the ‘cost’ which society needs to pay to remain fully human.
Are we deliberately overlooking the fact that people with Downs have human rights, too? Systematic selection is a blatant violation of international law. The 1968 World Health Organization guideline criteria state that population-wide screening is only ‘acceptable’ if a ‘treatment for patients with the disease’ is available. The Downs test does not cure anyone. Nobody is perfect; diabetes, PCOS, asthma, cancer, freckles on our nose… you name it! It is only a matter of time before we identify the next targets for destruction in this huge new field of eugenics. Once we target and even kill for a certain physical or mental condition, there is no logical stopping point.
On March 20th, on the eve of World Down Syndrome Day, the Jerome Lejeune Foundation in cooperation with ADF International, the Order of Malta and DownPride hosted an event at the UN, Geneva to ask the world community to speak up for our dear ones like Danny. Because if we don’t, soon enough there will be no one left to celebrate the day after.
Please sign the petition. http://stopdiscriminatingdown.com/