What would you do if you found out that your unborn baby was afflicted with Down syndrome? According to Down Syndrome South Africa (DSSA), this condition affects one in every 500 live births in the country. This syndrome is a lifelong genetic condition which affects a child’s physical and mental development. The average IQ of a young Down syndrome adult is half that of an unaffected child. These individuals often die younger than those without the condition.
A new pre-natal test for Down syndrome has been developed and is available to expectant mothers from mid-August in Switzerland, Germany, Austria and Liechtenstein.
The new screening procedure – called PrenaTest– is produced by German life sciences company LifeCodexx and is being marketed as an alternative to invasive procedures such as amniocentesis, chorionic villus sampling and percutaneous umbilical-cord blood sampling, which are currently available to high-risk women only (for example, those aged 35 and above). This has often received criticism since statistics suggest that, although the likelihood of having a child with Down syndrome increases with maternal age, approximately 80% of babies born with the condition are born to women aged 35 and younger. The new procedure addresses this concern as it allows women to be tested regardless of age.
PrenaTest uses blood samples from the expectant mother to screen for foetal abnormalities – as opposed to the dangerous surgical procedures practiced at present. Therefore, any risk of foetal damage or loss is eliminated. The rate of successful detection of the presence of the syndrome is also higher.
Despite the high demand for the test from Swiss doctors and mothers, it has already caused controversy over whether or not it will lead to a climb in abortion rates.
According to the Daily Mail, statistics held by the Human Fertilisation and Embryology Authority suggest that Down syndrome is the most common reason for parents to decide on abortion, with around nine in ten parents opting for termination upon discovering their child will suffer from Down syndrome. For this reason, critics are up in arms over the new procedure as they fear that this number could increase.
The international federation of Down syndrome organisations, consisting of 30 associations in 16 countries, has attacked this new prenatal test and has lodged a complaint to the European Court of Human Rights. The federation insists that the court should “recognise the human condition and protect the right to life of people with Down syndrome and those handicapped.”
Critics also believe that the medical industry plays a role in encouraging abortions among pregnant women. Disaboom.com claims that a study conducted in 2000 found that approximately 25% of doctors who inform parents that their child has Down syndrome do so in a way which encourages them to terminate the pregnancy. A 2005 survey of mothers with Down syndrome children confirm the findings. Mothers recall their doctors telling them something along the lines of having “awful” news when relaying the results to them.
Fear of an increase in abortions when Down syndrome has been detected is also an issue facing South Africa. The Human Sciences Research Council claims that 44% of South Africans believe abortion is justifiable if the child will have a serious birth defect. Pretoria News reports that in April this year, Joanita and Frederick Lange took two gynaecologists and a pathology company to court for allowing their Down syndrome baby to be delivered six years ago. Joanita Lange admitted that had she known her daughter Imke would be suffering from the condition she would have chosen to terminate instead. The couple said that raising a Down syndrome child is expensive and demanding.
Claire Rayner, once part of a Down syndrome association, has defended testing and abortion for the same reasons as the Lange’s. “People who are not yet parents should ask themselves if they have the right to inflict such burdens on others, however willing they are themselves to take their share of the burden in the beginning,” Rayner says.
On the other hand, some have a more neutral approach to the new testing procedure and believe it will impact women positively in the long run. Receiving results sooner allows women more time to process the news and therefore make a rational decision with no pressure to seek an abortion within the allowed time period. This is currently not the case with procedures such as amniocentesis where women only receive results within days to weeks of the legal limit to terminate a pregnancy. Early term abortions are also easier to have and allow women the freedom of choice in the safest way possible.
The test is also beneficial to individuals who decide to keep their Down syndrome babies, as early results could indicate whether the birth should be vaginal or performed via C-section, as well as whether any other surgical intervention is required. Most importantly, the results can aid parents emotionally by giving them time to come to terms with the child’s syndrome and start preparing financially for his/her needs.
Perdeby spoke to Vanessa dos Santos, DSSA’s national executive director. “Down Syndrome South Africa does not consider Down syndrome a reason for termination,” states Dos Santos. “People with Down syndrome can lead and do lead full and rewarding lives and make a valuable contribution to our society.”
Those opposing the test believe that society should focus on the positive medical advances being made to improve the lives of Down syndrome individuals. An article in The Washington Post mentions that finding a pill to improve sufferers’ mental abilities is on the way, and that the life expectancy for Down syndrome individuals has increased from age nine in 1910 to age 60 today. This is enough reason for society to not give up hope just yet.