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.
Next, Jones turns his attention to Saving Downs, with this “straw man” statement – a classic misrepresentation of an opponent’s position:
“‘Savingdowns.com’, an anti-screening group”
That is wrong. As per our web site, our mission statement is:
“To ensure that antenatal screening exists only to provide unborn children with Down syndrome and their parents with life-affirming, unbiased care through education, support and understanding.’
Our position on screening goes on to say:
“We acknowledge that for some, antenatal screening and diagnostic testing may reassure parents or help some parents prepare for the birth of a child with Down syndrome. We believe that any antenatal screening and diagnostic testing must respect the life and integrity of the unborn child, cause no harm, be only directed towards safeguarding or healing the unborn child and be presented in a way that does not discriminate against people with Down syndrome. “
Obviously we are not “an anti-screening group”. Jones has actually included links to our web site and quotes from our site in his paper. Obviously he has visited our web site. Our position statements are clear and they have never changed. It seems unlikely that the erroneous information is an error, which would point to a discrediting of our important advocacy. That would be unethical, maybe more so from bioethicists?
Then we have this:
“‘Savingdowns.com’ claims that the current screening costs ‘$75,000 per [terminated] child with Down syndrome’. However, such wording misrepresents what screening provides to the majority of women; namely, reassurance in the case of a ‘low risk’ result. To evaluate DS screening on the basis of cost-effectiveness is to compare DS to other screened, treatable diseases, such as breast and cervical cancer.”
OK. This is not a claim of ours. The National Screening Unit commissioned Health Outcomes International to produce a 2007 report to “inform its decision as to whether a national antenatal screening programme for Down syndrome should be established in New Zealand”.
It has a section titled “Cost Effectiveness”. Really, it does. This is what it says:
“A further assumption regarding the establishment of formal screening programmes is that the programme will be cost beneficial for the population and the health system”;
“The economic costs of screening outweigh the high cost associated with the long term care needs of an individual with Down syndrome”; and
“It is cost effective as the estimated cost of avoiding the birth of a baby with Down syndrome (about 38,000 pounds) is substantially less than the lifetime costs of care”.
The only thing we did was expose the truth. But we did convert the pounds to dollars for clarity. He has just got this wrong, whilst dismissing factual information that we have made public in the process.
He then goes on to say:
“For these reasons cost-effectiveness should not be used to assess DS screening, despite claims that it is the overall aim.”
Well, as we have seen, that is precisely the aim.
Actually, the NHS in the UK has this spreadsheet. You enter the termination rate for Down syndrome to determine cost effectiveness. Seriously, there is such a thing. Check it out, it’s fascinating. If you download the spreadsheet and go to sheet 8, there is a box where you enter the rate of the termination of pregnancies (TOP). It even has a default rate of 79.3%.
Reinforcing a myth that cost effectiveness is not a decision factor in screening programmes is unethical.
The next section discusses the question “Is screening for Down syndrome ‘eugenic’?” He has this to say:
“Anti-screening groups frequently label the current screening ‘eugenic’ in nature, making distinct comparisons to the killing of the disabled in Nazi Germany in the 1930s–40s.
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.”
There we go again with the straw man “anti-screening” fallacy again.
I am not going to get into this confusion about eugenics in detail. I have discussed before why screening for Down syndrome is eugenic here and here. Whether it is voluntary or not is irrelevant. Selecting the type of child to be born based on biological difference is eugenics.
For those interested in the Nazi T4 programme of the killing of the disabled, I highly recommend Henry Friedlander’s book “The origins of Nazi Genocide”. Friedlander points out how eugenics was promoted in the German universities. He also points out the T4 programme started with a voluntary relocation of disabled infants from their homes to institutions. They were subsequently killed without the parent’s knowledge. The consequences of T4 and antenatal screening are the same, the reduction of the population of people with Down syndrome. Therefore, the comparison is valid.
More confusion follows:
“Thus to argue that the screening programme is ‘eugenic’ seems inaccurate, as nearly half of all pregnant women are declining the offer of screening. This points to the success of fair, supported choices free from state or medical coercion.”
No it doesn’t. The termination rate for all pregnancies involving Down syndrome in New Zealand is around 55%. The National Screening Unit has advised that approximately 55% of pregnant women commence screening, which indicates that almost all diagnosed cases are terminated and all births were not screened. Screening and diagnostic testing is used almost exclusively for birth prevention rather than birth preparation in New Zealand. That is eugenics at play.
In Switzerland 87% of all pregnancies involving Down syndrome are terminated. In France it is 86%. That’s a bit different that “nearly half”.
“Lastly, non-directive counselling has been shown to be beneficial in allowing women to make fair, independent decisions for screening decisions, and is offered to women both before and after diagnostic testing.”
This is misleading because it presents a statement of policy (non-directive counselling) as fact in practice. This blog outlines the testimonies of those mothers who have recently been encouraged to have late term abortions following a diagnosis of Down syndrome. In New Zealand we know that non-directive counselling is absent in many cases, and that women are being directed towards terminations. Professor Jones would have known this if he asked the people concerned, or read that particular blog whilst visiting our web site.
Instead we have irrelevant research from 13 years ago in another country that under-represents the current situation in New Zealand:
“There is evidence that a minority of practitioners may attempt to pressure women towards termination of a DS fetus; however, a similar number urges continuation of an affected pregnancy.” – referring to a 2000 study in Washington.
The facts are that almost all diagnosed cases in New Zealand are terminated and all births were not screened, which is the opposite of what is implied in the above statement.
The next section of the paper is a confusing series of statements, supposedly about “Supporting individuals with Down syndrome”. Let’s not worry about the rather obvious point that one has to be born to be supported.
“But does the mere offering of a test not subtly imply that DS is undesirable, a ‘disease’ best avoided? We argue that this is not necessarily the case, although we recognise that children with DS require more care and support than non-DS children. This support is often required throughout life as in most cases a person with DS cannot live fully independently.”
Firstly, the level of care one does, or does not require, is not relevant to the question in hand. All human life is of value, all life is precious.
Secondly, of course the offering of such tests devalues the lives of people with Down syndrome. The test is primarily used for preventing the births of people with Down syndrome. This is basic ethics. If in doubt, Professor Jones could actually ask people with Down syndrome what they think.
Then we have this very problematic statement:
“For some families, raising a child with DS will be immensely difficult, and it is for this reason that we allow the option of termination. This is similar to the option of termination for other serious congenital disabilities, a situation that has prevailed since the 1978 amendment of the Crimes Act in New Zealand.”
OK. I covered the first part earlier on; it’s just really offensive.
The second part relates to New Zealand abortion law. The existence of a law does not make a situation ethical, the laws that once allowed trading of slaves is evidence of that. The current abortion law in New Zealand makes an exception for abortion solely on the basis of a disability. Why? Because the New Zealand Government are of the view that people with Down syndrome are a burden. The law is based on the recommendation on the 1977 Royal Commission on abortion in New Zealand. They dealt with the issue of “handicapped” persons, stating:
“It is not immoral to terminate a pregnancy where the fetus is likely to be born with a severe physical or mental handicap, because the burden of the handicapped person to himself and to his parents may be greater than the sum total of their happiness.”
“The termination of unborn life for reasons of social convenience is morally wrong.”
Down syndrome was discussed at length in the Commission’s report. For the handicapped we have the term “fetus”, for the rest we have “unborn life”, which immediately makes a negative distinction on a human life based on disability.
The wording of that report points to eugenic ideas that people with disabilities have “life unworthy of life” and their degree of “burden” exceeds their happiness. On this basis, the Government proceeded to provide them with less legal protection under the law, than their fellow human beings. That is discrimination and that law needs to be repelled.
He then goes on to provide two contradicting statements:
“We concurrently offer prenatal screening and value the disabled by upholding several values in society.
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 DS pregnancy (to child and family) may outweigh the perceived good from the child’s life.”
Bizarrely, Jones is saying we value the disabled but we must accept that a child with Down syndrome can be a disadvantage to themselves and their family. OK, that is just nonsense. The concept of a child with Down syndrome as being some type of “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.
Now, another straw man argument:
”Second, we value reproductive liberty, the ability to make individual decisions over one’s pregnancy. Others, such as the state, are limited in their control of this right.”
OK, I am not getting into a big discussion on abortion but it is suffice to say that there is no consensus on abortion in New Zealand. It cannot be said that “we (society) values reproductive liberty (a pseudonym for abortion)”. He has not provided any evidence to support that statement.
“Alongside these we uphold dignity, respect and justice, realising that those who are disabled demand equal respect as citizens, thereby deserving support from society.”
Hang on there, back the bus up. You said earlier “we accept that in some cases, the perceived disadvantages resulting from a DS pregnancy (to child and family) may outweigh the perceived good from the child’s life”.
Preventing births based on a diagnosis is in direct conflict with basic principles of human rights and dignity. That’s the heart of the matter.
So that’s about it, a tangled web of inaccurate and unethical statements that are discriminatory towards our community from the Director of Otago University’s Bioethics Centre.
In summary, Professor Jones has demonstrated an extremely discriminatory view towards people with Down syndrome. Such attitudes are not welcome in our community and are incompatible with a leading academic role relating to ethical conduct.
In closing: I liked this acknowledgment at the end of his paper:
“Acknowledgements: We gratefully acknowledge the financial support offered by the Health Research Council New Zealand and the Dunedin Faculty of Medicine, without which this work would not have been possible.”
So, in New Zealand the Health Research Council New Zealand and the Dunedin Faculty of Medicine fund “bioethicists” to write offensive and discriminatory papers about Down syndrome. They didn’t even get value for money; it is full of factual errors and straw man arguments.
Saving Downs gets no funding. We don’t need it. We are in it for the love for our children. We do it so that they will be free to live in our country with respect and with the same human rights that we afford to other New Zealanders.
And love is everything.