There has been a bit of discussion going on around the place about screening for Down Syndrome having a therapeutic benefit. So what is the situation here in New Zealand? This post cross posted from the new Saving Downs website provides some excellent points and is well worth a read.
Firstly, Saving Downs position is outlined in our Mission Statement:
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.
This is because we are advocates for people with Down Syndrome. Our view is that antenatal health care should be just that – supporting those wanted pregnancies through health care. We don’t recognise a role for screening to be used to prevent the births of children with the extra love chromosome, that is selection and eugenics.
Earlier this year Saving Downs made a submission to the National Screening Unit on the draft guidelines for health practitioners for antenatal screening for Down syndrome and other conditions. We made our position clear:
Saving Downs acknowledges that people with Down syndrome have an inalienable right to life from the moment of their conception until natural death, a right to be free from discrimination, and a right to be treated on an equal basis with all.
Saving Downs supports the use of screening only to promote safe birth outcomes for those who wish to have access to screening for this purpose.
Saving Downs opposes any form of antenatal screening and diagnostic testing that targets, and prevents, the birth of unborn children with Down syndrome, or causes harm to any unborn child.
So, where does therapeutic benefit fit in to all of this? From our submission:
In medical considerations, a proposed theoretical scenario of benefit or ‘beneficence’ would need to be statistically more likely to provide therapeutic gain than the stipulated Royal Australian and New Zealand College of Obstetricians and Gynecologists (RANZCOG) foetal mortality rate. The benefit or gain it proposes would also need to be proportional to the significance of the hazard imposed on the tested individual, i.e. death. If these criteria are not fulfilled, then the test is non-therapeutic.
Invasive prenatal diagnosis carries a RANZCOG stipulated additional foetal mortality rate of up to 3% for CVS and up to 1% for amniocentesis (both in addition to the normal miscarriage rate), and with increased foetal mortality rates in trainee hands. This risk to the foetus is considered disproportional to the comfort of foreknowledge, and disproportional to the known facts that conditions whose managed survival outcome is deemed dependent on invasive testing are rarer than the testing death rate.
The difference between therapeutic and non-therapeutic testing is an important explanation to give to parents. We submit that pregnant women and their partners must be advised that the screening pathway is non-therapeutic and that must be made very clear in the outset for facilitating informed consent.
We submit that pregnant women and their partners must be advised that participation in the screening pathway imposes more harm than benefit to their unborn child, through miscarriage and morbidity due to diagnostic testing.
That’s all a bit technical. It simple terms it means that if one enters the diagnostic (invasive test) part of the screening pathway, then on balance the unborn child will exposed to more harm than good. So, we believe that parents who want the information to be prepared need to understand this risk before they enter the screening pathway.
There are other risks to, miscarriage rates have been assessed as being 6 to 8 times higher than average in trainee hands. And what about other harm to the unborn child other than miscarriage from the diagnostic test, that we never hear about? Again, from our submission:
Apart from foetal testing mortality rates there are foetal morbidity rates which the mother needs to consider before consenting to the screening pathway. Limb deformities, lung problems, infection and other consequences of slow ongoing amniotic fluid leaks have been well documented. This morbidity and other complications are not mentioned anywhere in the draft health practitioners document.
We submit that pregnant women and their partners must be advised of the mortality and morbidity rates associated with each test and the additional risks associated with trainee practitioners.
Wrapping all that up in our submission to the National Screening Unit we said:
The difference between therapeutic testing and non-therapeutic testing is one which will need to be made very clear in the outset, again for reasons of informed consent.
Screening cannot itself diagnose or identify. It can only point one in twenty mothers, those 5% of the whole New Zealand population who will screen at increased risk, to invasively test or not. Invasive prenatal diagnosis carries a RANZCOG stipulated additional foetal mortality rate of up to 3% for CVS and up to 1% for amniocentesis (both in addition to the normal miscarriage rate) with increased foetal mortality rates in trainee hands. This risk to the foetus will be considered disproportional to the comfort of foreknowledge, and disproportional to the known facts that conditions whose managed survival outcome is deemed dependent on invasive testing are rarer than the testing death rate.
Any scenario postulated of benefit, to be genuine, should be investigated with an invasive test done as late as feasible in the pregnancy, to avoid foetal death, and risk only foetal prematurity.
The difference between therapeutic and non-therapeutic testing is an important explanation to give to parents.
We submit that all misleading assertions overstating what screening can actually achieve be corrected.
We submit that pregnant women and their partners must be advised that the screening pathway is non-therapeutic and that must be made very clear in the outset for facilitating informed consent.
To summarise then, there are real risks associated with the invasive testing stage of the screening pathway. We understand that some parents want this information and we want them to be fully aware of these risks before making that decision.
As an advocacy group for people with Down Syndrome we only support screening for life affirming care and support parents who want to use it for that purpose. However, parents should be aware of the potential harm to their children if they enter the invasive testing stage. In medical terms the level of harm across the population exceeds any medical benefit that relies on a diagnosis of Down Syndrome. Essentially it is a programme to screen Down Syndrome out of the New Zealand population.
Dozens of test tube babies have been aborted because they had Down’s syndrome.Over five years, a total of 123 foetuses conceived through IVF-type treatments were terminated after the mother was told they suffered from the genetic abnormality.
Often the women will have spent years trying to become pregnant and may have spent thousands on private fertility clinics in the hope of conceiving.
Last night, anti-abortion campaigners said the statistics on IVF terminations showed that some women treat babies like ‘designer goods’ – paying a fortune to conceive but then aborting them when they turn out not to be perfect.
Down’s syndrome is a genetic condition caused by the presence of an extra chromosome in each cell. The children grow up shorter than usual and often have learning or behavioural difficulties. There are believed to be around 60,000 people in the United Kingdom with the condition.
Statistics show that in 2009, the most recent year for which figures are available, a total of 127 abortions were carried out on babies conceived through IVF-type assistance.
The data held by the Human Fertilisation and Embryology Authority shows that Down’s syndrome was the most commonly given reason for an abortion, cited in 31 of the cases – three times as many as in 1999. Foetal abnormality was the next biggest reason for abortion, accounting for 19 cases, while 15 babies with Edward’s syndrome – another condition caused by the presence of an extra chromosome – were also terminated.
As it is not mandatory for reasons for terminations to be recorded, the number could be higher. No reason was given in 22 cases. Between 2005 and 2009, some 123 foetuses with Down’s were terminated.
Andrea Williams, of Christian Concern, said:
‘We have to question the values of a society which focuses so greatly on adult “wants”.
‘That a woman pursues a baby through fertility treatment and then aborts it because it is not perfect is selfish and harsh.’
Josephine Quintavalle, of campaign group Comment on Reproductive Ethics, said:
‘It is generally accepted that there is a significant under-reporting of abortions of babies with Down’s syndrome, but I think we are especially saddened when we read of such abortions in association with IVF, where the women involved were clearly originally desperate to have a child.’
The number of abortions carried out because of Down’s among those who conceived naturally is more than 1,000 a year – or three a day. Around nine in ten women who are told they are going to have a baby with the condition opt for a termination.
The number of terminations among potential IVF mothers could be influenced by the fact women often turn to fertility treatment later in life, when the risks of conceiving a Down’s syndrome child increase markedly.
Women over the age of 40 are 16 times more likely to have a Down’s pregnancy than a woman under the age of 25.
Saving Downs are a New Zealand based group of parents and siblings of people with down syndrome. They have formed in response to the New Zealand Government’s new state funded antenatal screening programme that targets and identifies unborn children with Down syndrome for selective abortion.
Midwives and general practitioners have been invited to a series of nationwide workshops in May and June 2012 to further enhance skills, knowledge and understanding in relation to antenatal screening for down syndrome and other conditions.
The down syndrome community has been excluded from participation in the workshops and they are taking this opportunity to provide their perspective on the screening programme.
They have recently produced the following resource for health professionals. For more information on Saving Downs visit their website - www.savingdowns.com.
Eleven facts for midwives, GPs and parents
- Like all people, those with Down syndrome are defined by their basic human dignity and not by their genetic makeup. They are loved and valued members of our families and communities. They make positive contributions to our society.
- Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition.
- In a recent Children’s Hospital Boston survey 99 percent of parents of children with Down syndrome reported that they loved their child, 97 percent were proud of their child, and 79 percent attributed a more positive outlook on life to their child.
- The screening pathway is non-therapeutic. It imposes more harm than benefit to a mother’s unborn child, through miscarriage and morbidity due to diagnostic testing.
- The screening pathway leads to maternal anxiety and foetal hazard. Interrupting the pregnancy has adverse mental health outcomes for the mother.
- There is no evidence that babies with down syndrome can have a better medical outcome due to screening and testing. Medical problems associated with down syndrome can be detected by routine antenatal clinical care without a diagnosis.
- For every 100 women who screen at high risk for Down syndrome, RANZCOG state that only between four and six of them will be carrying a baby with down syndrome.
- It costs around $70,000 to detect an unborn child with down syndrome.
- Before the 2010 quality improvements around 55% of all babies with Down syndrome were not born due to antenatal screening and intervention. When Denmark introduced the same “quality improvements” the impact was a further halving in births of children with Down syndrome. A similar trend here would result in around 80% of all births of children with Down syndrome being prevented. Many people recognise that this is eugenics.
- The New Zealand Down Syndrome Association does not consider down syndrome in itself a reason for termination of a pregnancy.
- People with down syndrome and their families are best placed to provide parents with a diagnosis with accurate information and knowledge based in direct experience.
Ethics and the Hippocratic Oath
The original Hippocratic Oath has been updated by the Declaration of Geneva. It has been adopted by the World Medical Association and reflects the dedication of medical professionals to the humanitarian goals of medical practice. It includes:
- A commitment to the service of humanity. A duty to act with conscience and dignity.
- A commitment to not allow a disability to intervene between ones duty and their patients. Upholding the utmost respect for human life.
Many people in the down syndrome community consider the screening programme to be eugenics, as it targets this community for birth prevention based on their biological difference. Such practices offend medical ethics, human dignity and the basic principles of humanitarian justice and international law.
Midwives and general practitioners have a statutory right to refuse to participate in antenatal screening for disabilities under Section 174 of the Health Practitioners Competence Assurance Act 2003. This provides for conscientious objection in relation to any reproductive health service.
Loving Every Child: Defying Eugenics
It is one of life’s great paradoxes that the most gentle, loving and enduring amongst us have always been the target of the eugenicists – those with down syndrome: the very people who embrace those defining human qualities of unconditional love and compassion.
The down syndrome community has witnessed with grave concern the return of eugenics in New Zealand under the guise of prenatal health care, reproductive choice and human rights. It is inflicting serious harm on our unborn children, parents and the down syndrome community.
In response to this Family Life International NZ and SavingDowns are holding a one-day seminar “Loving Every Child: Defying Eugenics”. This will be held in Auckland on the 4th August 2012 at the Columba centre. This will be an opportunity for people to learn about the history of eugenics and its recent emergence into New Zealand society. The seminar will be looking to raise awareness around the issue and to map out a response towards restoring respect and dignity towards the down syndrome community. Midwives and general practitioners have a commitment to the service of humanity and are particularly welcome to attend and participate in this seminar.
Please contact Mike Sullivan at firstname.lastname@example.org for further information.
Cross poster from the Culture Vulture
Last week this blog featured a couple of posts on the issue of prenatal screening, which of course resulted in a slew of comments about the nature of this screening and the resulting abortions of people with Down syndrome that it leads to in the vast majority of cases.
One of the interesting issues that was raised during the course of those discussions was whether the use of screening for Down syndrome was a problematic act in and of itself, or whether it was merely the aborting of people with Down syndrome that accompanies the screening that is actually the issue here.
I think it’s actually a bit more complex than that, because while asking the question about whether the act of testing for a particular genetic condition is unethical or not is an important thing to ask, focusing only on that aspect of the discussion misses other questions, such as ‘is it necessary?’ or ‘when should it actually be carried out?’, which are questions which also have an impact on the question of whether we should be carrying out early screening for Down syndrome.
Some people have suggested that early screening for Down syndrome empowers the parents of an unborn child by providing them with knowledge about their child, thus enabling a batter standard of care for the child, and appropriate support for the parents in this specific caring role.
I think the empowerment of parents is a good thing, however I am not at all convinced that early prenatal screening is actually necessary for parental empowerment – why wouldn’t a test at birth achieve the exact same outcome for parents?
Is there anything unique and pressing that a baby with Down syndrome needs at birth that a baby without Down syndrome doesn’t? If not, then why can’t the test wait until birth?
This idea of parental empowerment is tied closely to the very recent fascination with the notion that we should be ‘managing’ every pregnancy, but I have yet to be convinced that good ‘pregnancy management’ requires early screening for Down syndrome.
Does knowing that your child will be born with Down syndrome actually make the scenario of being a parent of a child with Down syndrome any easier to come to terms with?
Doesn’t it actually create more pressure on the parents, who, while the child is still hidden from sight within the womb, are far more likely to fall prey to unrealistic fears and imaginings that would otherwise be quickly dispelled if the child was actually there to see, hold and touch when they received the diagnosis?
It’s also important to remember that invasive tests such as amniocentesis carry very little risk to the baby if they are carried out much later in a pregnancy.
All of this leads me to conclude that the primary reason for promoting early screening for Down syndrome is to provide a window of opportunity for eugenic abortions to be carried out – apart from reducing the risks to the baby from invasive testing, this is the only thing of any substance that actually changes if you shift the testing process to a point much further down the track.
I had the privilege of being at a bioethics colloquium in Australia earlier this year where this particular issue was debated, and one important point that was raised was that of ‘disproportionate risk’, and it’s impact on the ethics of screening.
Now usually when people think of the issue of disproportionate risk and screening they think of it in relation to the risk caused by the testing (i.e. ‘is there a serious risk of harm to mother or the baby from the test itself?’), but this completely misses the disproportionate social risks of providing early screening for Down syndrome.
You see, when early screening for Down syndrome is made available, there is a disproportionate risk of death to persons with Down syndrome (approximately 85% of people with Down syndrome are now aborted as a result of this screening), and this needs to be considered when evaluating the merits of the act of screening.
When push comes to shove I am yet to be convinced that there is any genuine need for Down syndrome screening to actually take place early in a pregnancy, and therefore I am not at all in favor of the current screening programme, which I think could be carried out much later if, as its advocates claim, eugenic abortion really isn’t a key aspect of this programme.
For those who haven’t heard it already, here is the radio advert for the new eugenic screening programme targeting people with Down syndrome in NZ.
Note the soothing music and gentle voice of the female narrator, and the way that the advert implies that genetic screening is one of the most important and urgent things that a pregnant woman needs to do.
Of course there is no mention of the fact that they’re testing for Down syndrome, or that women will be offered the opportunity to abort any Down syndrome babies the test happens to discover.