Saving Downs reject University’s discriminatory paper on Down syndrome

All chilren have a right to lifeThanks to Mike Sullivan at SavingDowns for once again standing up and being a voice for people who have Down syndrome (both pre-born and born), and their families.

We reject Otago University’s discriminatory paper on Down syndrome

Saving Downs has called for the resignation of Otago University’s Director of Bioethics following the publishing last week of a highly offensive and discriminatory paper about prenatal testing for Down syndrome.

The paper that was published last week basically outlines the practice of  antenatal screening for Down syndrome in New Zealand and considers the possible implications of the introduction of ‘Non-Invasive Prenatal Diagnosis’ (NIPD), which enables diagnosis earlier in pregnancy with less risk of complications.

There are a number of academic inaccuracies in the paper. Let’s have a look at those factual errors and other problematical statements.

In the abstract Jones acknowledges that:

“Prenatal testing may result in fewer people with Down syndrome.”

He then attempts in the rest of the paper to dismiss any ethical concerns over such an outcome. Such a possibility is extremely problematic as it devalues the lives of people with Down syndrome by reducing their birth prevalence. It is in direct conflict with basic principles of human rights and dignity.

Professor Jones states:

“First, we value an ethic that stresses the importance of ‘doing the most good’. On these grounds we accept that in some cases, the perceived disadvantages resulting from a Down syndrome pregnancy (to child and family) may outweigh the perceived good from the child’s life.”

This statement is false, as can be attested by the actual lived experience of people with Down syndrome and their families. Children with Down syndrome live good lives and are loved and valued. The concept that they are a “disadvantage” and that we are “doing the most good” by not having them around is an extreme form of discrimination that reinforces negative stereotypes towards them. It exposes them to harmful attitudes, bigotry and prejudice.

The first section of the paper provides an overview of screening in New Zealand and the 2010 “Quality Improvements”, a subject has been discussed at length on many of our blogs.

It is stated as a fact that:

“Chorionic villus sampling (CVS) is used earlier than 14 weeks of gestation, and amniocentesis is used after this time. Both procedures carry with them a spontaneous abortion risk of around 1%.”

This is incorrect. The risk of spontaneous abortion for CVS is 1 to 3% according to the Royal Australian and New Zealand College of Obstetricians and Gynaecologists. Accuracy is important is discussing such matters where lives are at stake.

This is immediately followed by a very problematic statement:

“With current screening most pregnancies subjected to CVS or amniocentesis do not actually have a DS fetus and as a result, fetuses are lost as a consequence of these diagnostic procedures. The primary advantage of NIPD is that there is no risk of spontaneous abortion, because diagnosis is based on only a blood sample.”

A careful consideration of this statement shows that there is an underlying false assumption that the loss of foetuses without Down syndrome is an ethical concern, whilst the loss of those with Down syndrome does not present a ethical concern. NIPD is seen as an advantage because it reduces harm to one group of human beings whilst continuing harm to those with Down syndrome. The position stated is that one group of human beings are off less worth (those with Down syndrome) than the others (those without Down syndrome). The ethical and non-discriminatory position is to ensure that there is no harm caused to either group during the screening and diagnostic pathway. Incidentally, it was this same flawed logic that was behind the 2010 “quality improvements”.

Jones then moves on to observe that the introduction of NIPD is likely to have a negative impact on birth numbers for Down syndrome:

“Increased uptake of tests will result in increased detection of DS, and probably more terminations. The number of DS births may, as a result, drop. However, it is unlikely that DS will disappear.”

“But as more pregnancies are tested, will DS become a ‘rare’ disorder? In time, perhaps.”

But then he says:

“DS screening does not serve to systematically erase the congenitally disabled from the population; it provides information for patients about their pregnancy.”

So he has in just a few paragraphs before recognised that the number of births is likely to drop, but then says that screening “does not serve to systematically erase the congenitally disabled from the population”. If you proceed with act (screening with NIPT), knowing the likely outcomes (less births), then you are ethically bound to the consequences of your actions. This is a basic principle of law and ethics.

Read the rest of this post at Saving Downs.

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