Last week new guidelines for screening for Down syndrome in New Zealand were formally issued by the National Screening Unit. These consist of a leaflet for pregnant women and their partners and detailed guidelines for Health Practitioners. These have both been revised following the upholding of our complaint to the Health and Disability Commissioner in 2010. The Commissioner ruled that the previous documents could be “more comprehensive and accessible”. We also made detailed submissions on the drafts of these new documents last April.
The new documents are a significant improvement on their predecessors and an important victory in our ongoing advocacy for the full recognition of human rights for our community.
The overarching change in these documents is a new emphasis towards the help and guidance available for mothers and their pregnancies throughout the screening (and diagnostic testing) pathway. There is a noticeable shift away from the offensive prominence of the disability selective “termination option” in the original documents. The new documents are probably the best we can expect in the light of the New Zealand abortion law allowing discrimination against those with a disability – more on that later.
It is these types of small, patient steps that will win this race. So, the new focus on help and guidance and respect for the Down syndrome community is most welcome, as one of these steps in our journey for social justice.
Now, let’s look at some of the specific changes that we have secured.
The most significant change is the policy move away from the routine offering of screening for Down syndrome to all pregnant women to simply advising them of the availability of screening. This was announced in our press release in May last year. Well respected and prominent New Zealand journalist Kerre Woodham had this to say about the shift in focus in her great editorial in the New Zealand Herald in June 2012:
“It’s a subtle shift in emphasis but an important one because a growing number of people, health professionals included, believe that Down syndrome in itself is not a good enough reason to terminate a pregnancy.
And I would concur. It’s a personal choice and not everyone is going to think the same way, but having worked with a number of children and adults with Down syndrome, having enjoyed the humour and the wit and the work ethic of a number of young men and women with the condition, I can’t see how anyone would consider a person born with Down syndrome to have any less right to be on the planet than those born free of it.”
Kerre concluded her editorial with:
“If you think that by terminating the pregnancy, you’d be doing the child a favour, I recommend you ask a person with Down syndrome what they would choose.”
And that pretty much says it all really – thanks Kerre!
By changing the requirement from “offering” screening to simply “advising” pregnant women of its availability, the onus is now on parents to request participation as a choice, rather than it being a matter of routine pregnancy care. That’s an important distinction.
Turning to the new pregnancy leaflet, there are a number of important changes that are all a direct result of our advocacy.
Importantly, it is made very clear that screening is optional and a matter of choice, rather than routine. It is clearly laid out that it is optional to enter the screening pathway and optional to leave it at any point. Those choices must be respected.
The leaflet now includes pictures of a pregnant woman along with her partner. The previous versions were text only. So, we are seeing the human dimension.
There is now a picture of a family with their children, including a cute one with the extra love chromosome; acknowledging in a positive way the human face of Down syndrome.
There is now an ultrasound image of an unborn child, so we are clear on the other human life that is involved in this process.
There is now a diagram showing how a diagnostic test is done with a needle inserted into the placenta, next to the unborn child – that will ring alarm bells for some and reinforces the risk to the other life involved.
It is now made clear that all conditions cannot be determined through screening. That’s an important distinction.
It is now acknowledged that Down syndrome is present from conception, recognising that the condition is a part of the naturally occurring range of human life that starts at conception.
Down syndrome is now largely presented in a more positive light. The focus on health problems is disappointing though, as all people experience a range of health issues as part of the human condition. The previous versions were certainly very disrespectful towards those with Down syndrome.
The difference between screening and diagnostic testing is now properly explained, which will hopefully address widespread confusion around this.
Results are now referred to as “chance” rather than the negative “risk” we have long wanted to wave goodbye to. Our children are not risks, so we wave that one goodbye!
The risk of diagnostic testing was under presented in previous versions. Now it is properly detailed:
“For every 200 women who have a diagnostic test, one or two will have a miscarriage as a result of the test.”
The guidelines explain further that for every 1000 women screened, about 50 will receive an increased chance result and two will be diagnosed with a baby with Down syndrome or another condition. A screening cut-off of 1:300 is used to detect 85% of babies with Down syndrome. There is no discussion, however, as to why it is necessary to detect these babies.
If you do the maths, for every 200 women who have a diagnostic test, there will be one or two miscarriages from the test to find eight unborn children with Down syndrome or another condition. In other words, it’s a dangerous business. In fact, there is no life affirming intervention that relies on a positive diagnosis of Down syndrome where the statistical (average) benefit is greater than the chance of death from the diagnostic test. This means that the screening pathway is non-therapeutic as defined by medical practice. On this, we included in our submission on the draft guidelines a request 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”.
But you won’t see that implicitly stated in the guidelines. However, it can be established by examining the data on risks of diagnostic testing. We have discussed this issue before in our blog Screening for Down syndrome: is it therapeutic?
The new guidelines for health practitioners support practitioners advising about the availability of antenatal screening for Down syndrome. There is a raft of important changes to these guidelines with over 85% of the issues we submitted on being resolved. A number of these are somewhat medically technical in their nature, so I won’t be getting into the detail of those. Suffice to say that these have been resolved and it seems surprising that our own specialist had to point out basic errors in the NSU’s draft guidelines. We can just be happy that they have been sorted out and the guidelines are now more closely aligned with the principle of providing detailed, factual and evidence based information; this was poorly lacking in the previous versions.
The earlier guidelines had incorrect information on the risk of miscarriages and no details about complications caused by diagnostic tests. These have now been corrected:
“The risk of miscarriage after amniocentesis is about one miscarriage in every 100–200 women tested.”
“The risk of miscarriage after CVS is about one miscarriage in every 50–100 women tested.”
“Other rare complications include leaking of amniotic fluid and infection of the uterus or foetus.”
As discussed above these are significant hazards to find a very low number of unborn children with Down syndrome. Parents deserve to know that.
For the first time there is acknowledgement of the potential mental harm associated with screening and diagnostic tests:
“The potential harms …. include anxiety and stress associated with the screening process”.
Maternal anxiety and foetal hazard in the screening and testing process are known accompaniments. The former can disrupt bonding between mother and child with added psychosocial ramifications of pregnancy loss, while the loss of a child through a non-therapeutic investigation is usually considered a tragedy. It was remiss of the NSU not to advise parents of this risk earlier, it has been well documented since 2006.
There is now clarification that the 18 to 20 week anatomy scan is another screening test for conditions such as Spina Bifida and can present markers for other conditions. This has always been an area of confusion, with many parents using this ultrasound scan for a social “look at their child” and not realising the implications that this is in fact a screening test for the pregnancy. Parents need to understand these things. It is not good enough to go in for a “social scan” and come away with something you are not prepared for.
The section on communicating positive diagnostic results has been much improved with more information and support available for continuing the pregnancy. It is implicitly stated that health practitioners must support a women continuing with a pregnancy. Hopefully that will address the type of problem we experience in New Zealand where women are encouraged to have late-term abortions for Down syndrome and Spina Bifida. Now that there are clear guidelines against this practice we will be able to hold health practitioners accountable for their actions. Encouraging abortion has to stop. It lowers the dignity of the child, the parents and those living with disability. We will be keeping a very close eye on things in this regard.
It is good to see postnatal palliative care presented as an option where a baby is expected to have a very short life expectancy. This has never been included as an option previously and provides for a natural process of passing and healing. It will also help towards mitigating situations where parents have been given little hope for their children, and those children go on to have great lives.
The NSU have done a reversal in the area of monitoring. Previously they refused to monitor the effect of the screening programme on the birth prevalence of Down syndrome. Following our submission, there is now a specific requirement to monitor the outcomes of pregnancies in the screening pathway. This is something we will be watching very closely.
So, that’s it in a nutshell for the new leaflet and guidelines. They are probably the best we can expect in the light of the New Zealand abortion law allowing discrimination against those with a disability.
Laws that make provision for abortion on the basis of a disability afford less legal protection to one section of our society than another, solely based on ability and biological difference. These laws are based on a view that the life of a person with a disability is of less worth, warranting a lesser level of legal protection. The law has been set up expressly to avoid the birth of people with disabilities. This is both discrimination and eugenics. It devalues the lives of all people living with a disability by establishing in law that those with a disability have fewer rights than others.
We will continue working on the repeal of foetal abnormality as grounds for abortion in New Zealand. This process is now underway in the UK with a Parliamentary inquiry into abortion on the grounds of disability. We have accepted an invitation to make a submission to that inquiry. Any positive change in law and policy from that inquiry will inevitably have downstream benefits in New Zealand and other countries that have discriminatory disability selective screening programmes.
In closing, let us remember that pregnant women enter into trusted relationships with health care providers to receive nurturing of their unborn child. When faced with an unexpected diagnosis, the dignity of their child hasn’t changed and that woman deserves loving and life affirming support to continue with her pregnancy. Offering an abortion is not a civilised, loving, or compassionate response to a disabling condition. It lowers the dignity of the unborn child, the parents and the disability community. The new emphasis towards the help and guidance available for mothers and their pregnancies throughout the screening pathway is an important step in the journey to realising social justice for our community.