Editor’s Note: In light of recent and troubling events in the U.S., and on the heels of a CBS report highlighting the near elimination of babies born with Down Syndrome in Iceland, I felt it might be timely to republish a piece originally written in September 2014.
In examining the evolution of society’s treatment of those who experience perceived disabilities- intellectual or physical, it would seem that progress has been significant. The last institution in Ontario that warehoused almost 2, 000 people with developmental disabilities was closed in 2009. Individuals were relocated to their original communities where most will live out the rest of their days in small group homes or in fewer cases, with family. The educational system and workplace are striving towards inclusive environments and there is an increase in government support for individuals so that people of all abilities may fully participate in all aspects of community.
However, various Down Syndrome organizations, as well as many self-advocates, have been sounding the alarm on the topic of pre-screening for the extra 21st chromosome during pregnancy.
It wasn’t long ago when crude terms like ‘mongoloid’, ‘imbecile’ or ‘idiot’ were acceptable terms, which historically had both legal and medical relevancy, when speaking about individuals with what we now refer to as Down syndrome. The perplexing term ‘mongoloid idiot’ was invented by the very man for whom Down syndrome is named. Dr. John Langdon Down worked as a superintendent in an asylum for children with various disabilities. Dr. Down became aware that some children presented very similar characteristics and were alike in appearance. It was in 1862 when Dr. Down officially classified this group as ‘of the mongol race’.
The 1950’s marked the genetic revolution. A French doctor and research scientist, Dr. Jerome LeJeune, was working in pediatrics in a Paris hospital when he was asked to run genetic experiments on children with ‘mongoloid’ features. Dr. Lejeune’s discovery of the third 21st chromosome among these children was a triumphant breakthrough in the field of genetic research. Dr. Lejeune renamed the Down syndrome classification as Trisomy 21. The doctor was hopeful that the information could lead to a ‘cure’ for Down syndrome. A devout Catholic, Dr. Lejeune was devastated that his discovery instead paved the way for the development of prenatal screening for the chromosome abnormality that would lead to abortions among many pregnancies affected by the third chromosome.
‘Testing Times: Do New Prenatal Tests Signal the End of Down Syndrome?’, published by the New Zealand Medical Journal in March 2013 and co-authored by Robert Cole and Gareth Jones, incited advocacy groups to challenge slicker approaches to modern day eugenics. New technology has allowed countries like New Zealand, the US and Canada to introduce earlier and less intrusive pre-natal testing to screen for certain chromosome occurrences. Through a simple blood test, Non-Invasive Prenatal Diagnosis/Testing (NIPD) can detect Trisomy 13, 18, 21 (Down Syndrome) and sex chromosome abnormalities (X and Y chromosomes). The information is accurate without posing a risk to the pregnancy and reduces the number of women who proceed to amniocentesis.
The likelihood that more pregnant women will opt for NIPD means that there will be an increased detection of the third 21st chromosome and some believe that the number of Down syndrome births will decrease because of increased choice to terminate the pregnancy. Cole and Jones state in their paper, “It is unlikely that DS will disappear. Abnormalities escape detection using even the most rigorous diagnostic techniques, and there will always be women who do not wish to undergo testing.”
Statistics show that of the women who do choose to undergo pre-screening for Down syndrome, 90% will abort if Trisomy 21 is detected.
While pre-screening to eliminate pregnancies that carry fetuses with Down syndrome may seem subtle its ethical foundation is not unsimilar to the attempted genocide of people with disabilities during the atrocities of World War II.
In 1939 Hitler ordered the widespread ‘mercy killing’ of the sick and disabled. The Nazi euthanasia program, code-name Aktion T4, is instituted to eliminate “life unworthy of life.” In 1941 Hitler suspends the Aktion T4 program that murders nearly 100,000 people, but the killing continues through the use of lethal drugs and starvation instead of gassings. In total, an estimated 200,000 people with physical and/or developmental disabilities are killed by lethal injection, starvation, or in the gas chambers.
Cole and Jones attempt to mitigate the comparison of pre-natal screening to the eugenic crimes of WWII stating, “This clouds the debate around the ethics involved, since current screening is voluntary, not state enforced. Patients are given a choice whether or not to be screened, and how to respond to the resulting information.”
Mike Sullivan is a spokesperson for Saving Downs in New Zealand. He responded to the publication stating, “Eugenics has always been concerned with the policy of reducing the prevalence and population of people deemed to be disadvantaged, so they’ve actually presented that argument in the paper.”
In an interview Sullivan is asked why he wants to save Down’s syndrome. His answer is perfect. “They’re a natural part of our human diversity and that diversity is a thread that connects human beings as a community and a society, and it’s a part of what we are. We’re all connected. We should learn as a society to embrace every child as they are, as a human being that holds dignity like everyone else.”
The recent matter of baby Gammy, the twin baby boy born with Down syndrome by a surrogate mother, has caught global attention. The young surrogate, Pattaramon Janbua, was hired by an Australian couple, David and Wendy Farnell, to carry their pregnancy. Janbua carried twins, a boy and a girl. When the Farnell’s discovered that the boy had Down syndrome they asked Janbua to terminate the pregnancy into its seventh month. Janbua refused and when she delivered healthy twins the Farnell’s took the baby girl home and left behind baby Gammy. While the behaviour is shocking some might argue that baby Gammy is better off than his twin sister. David Farnell has since been discovered to be a registered child sex offender. Baby Gammy remains in the care of Janbua who intends to raise him as her own child.
In light of international attention given to baby Gammy’s surrogacy on August 16th, 2014 Saving Downs secured a commitment from the New Zealand Human Rights Commission that they will prioritize Down syndrome discrimination.
Sullivan described the news as a milestone event and a great foundation for moving ahead with positive change. “We are delighted to reach a point where the Commission has listened to, heard and acknowledged our important concerns around prenatal discrimination. We look forward to continuing our work with them in building a culture that honours and respects the diversity of all humanity, including those with Down syndrome.”
A few days after the announcement by the Human Rights Commission, evolutionary biologist, Richard Dawkins created a stir on Twitter when he tweeted a reply to a British author who commented that she would be faced with a ‘real ethical dilemma’ if she found out that a child she was carrying had Down syndrome. Dawkins tweet read: “Abort it and try again. It would be immoral to bring it into the world if you have a choice.” He defended his view stating that he would not apologise, “for approaching moral philosophic questions in a logical way.”
The Canadian Down Syndrome Society issues a statement in reply to Dawkins controversial statement. “We believe that the widespread use of genetic screening for the purpose of identification and termination of fetuses with Down syndrome may adversely affect the quality of life for all persons with Down syndrome and threatens the diversity and vitality that people with Down syndrome and other disabilities currently contribute to many Canadian communities. Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition.”
VATTA is the Canadian Down Syndrome Society’s steering committee. The Committee is made up of self-advocates promoting the full inclusion of everyone with various degrees of abilities. They recently shared their thoughts on this matter in their short film What Prenatal Testing means To Me.
It is uncertain whether or not Richard Dawkins has watched the film.