Cross-sourced from the Down Syndrome – So What campaign. For more information on the campaign visit their website – www.downsyndrome-sowhat.eu/down-syndrome-so-what/ . To help spread the message, visit our Facebook page where we have the five campaign photos which can be shared on Facebook.
On March 21, 2013, the 2nd World Down Syndrome Day – made official by the UN – will be celebrated across the world. This event aims to raise awareness about Down syndrome and inform members of the public about this often misunderstood disability, and about the prejudices people with Down syndrome face each day. With advanced methods of prenatal screening now or soon to be available, this day takes on a singular and urgent dimension.
The expanded use of early prenatal screening for Down syndrome threatens to increase the already staggering number of terminations of pregnancies which are prenatally diagnosed. Down syndrome occurs in approximately 1 in 700 births and is a disability caused by the presence of an extra 21st chromosome. The arrival of a new maternal blood test in Europe will certainly cause further stigmatization and rejection.
Many countries still a lack comprehensive health policy requiring that families who receive an unexpected prenatal diagnosis of Down syndrome be provided with information about positive therapeutic developments and outcomes for those living with Down syndrome. In addition, the efforts undertaken to facilitate integration of persons living with Down syndrome into educational systems and work places are clearly insufficient.
In 2013, European citizens, whatever their nationality, first and foremost need to be provided with a positive, and welcoming message about raising a disabled child. Individuals living with Down syndrome and their families are entitled to the same dignity and respect afforded to any other member of society, but that is never what they now receive.
To this purpose, associations from 12 nations: Spain, Portugal, Croatia, the United-Kingdom, Italy, Germany, Poland, Latvia France, Russia, the U.S. and New-Zealand have launched this international campaign to say together:
Down Syndrome… so what!
In this awareness campaign, 5 people with Down syndrome from diverse cultural and national backgrounds, and of different ages (a young child, a young woman, two young men and an older man) call for the attention of the public and their political representatives. Their goal is to lessen the fear of those in society who are uncomfortable with the disabled, especially those living with Down syndrome. Thanks to their beautiful, mischievous and joyful faces, they witness to all of us that happiness is indeed possible for themselves and their families.
On the 21st March, the Fundación Síndrome de Down de Madrid, Canal Down21, Fundación Iberoamericana Down21 (Spain), APPT21, Olhar 21 (Portugal), le Down Syndrome Center Pula (Croatia), Down Syndrome Development Trust (United Kingdom), Coor Down (Italy), Arbeitskreis Down-Syndrom E.V. (Germany), Opole Association for Helping Children with Down Syndrome (Poland), Dauna Sindroma Biedriïba (Latvia), Down side up (Russia), Jérôme Lejeune Foundation (USA), Saving Downs (New-Zealand), the collectif Les Amis d’Eléonore and the Fondation Jérôme Lejeune (France) share the same urgent message and strongly reaffirm: Down Syndrome… SO WHAT!
Controversy has erupted over a paper published by two NZ bioethicists which suggests that genetic screening for Down syndrome is not eugenics, and that newer and more efficient testing should be introduced so that this “would allow women more time for decision-making, and the option of an earlier, safer termination” of babies with Down syndrome.
In this edition of the Edge of Reason Podcast we take less than 10 minutes to explore the flaws in this paper and why it’s central claims about disability rights and screening are simply nonsensical.
Cross-sourced from TheLeadingEdge
Press release cross-posted from Saving Downs.
Saving Downs demands 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.
Professor Jones acknowledges that “prenatal testing may result in fewer people with Down syndrome”and then attempts 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 Testing times: do new prenatal tests signal the end of Down syndrome?
“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; children with Down syndrome live good lives and are loved and valued members of their families. The concept of a child with Down syndrome as being some type of “disadvantage” is an extreme form of discrimination that reinforces negative stereotypes towards them and exposes them to harmful attitudes, bigotry and prejudice. Saving Downs’s spokesman Mike Sullivan said that “There is no place for such attitudes in our society”.
Professor Jones has an established track record of discrimination towards the Down syndrome community. In October 2011 he stated:
“The disease restricts the family of the sufferer, the disease effects not only the quality of life for the sufferer but the quality of life for the sufferers direct family. The sufferer needs a considerable more amount care, time and money than a healthy child and needs to be cared for their whole life, not just their childhood”.
Mr Sullivan said that “such attitudes are extremely hurtful and false. People with Down syndrome are not a disease and they are not sufferers. Concepts of “quality of life” for people with disabilities are harmful, discriminatory and point to an ablest and eugenic view of the world”.
Mr Sullivan calls for Professor Jones immediate resignation, noting that “He 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 conclusion Mr Sullivan said that “People with Down syndrome must be accorded the full respect and acknowledgement of human rights that are afforded to other New Zealanders”.
Recently, I read an article discussing the legalization of euthanasia for 12-year olds in Belgium. (BioEdge, Should 12 year old kids be allowed to choose euthanasia?) The article claims that the ‘privilege’ of euthanasia was already being bestowed upon some minors. ‘It happens so regularly that doctors need a legal framework for carrying out their job.’ Wow. Ok, so, if an illegal action is a somewhat regular occurrence, then we should make it legal. Just so that it’s not illegal anymore. That certainly bothers me. And as many of us probably heard, John Key said basically the same thing on Newstalk ZB last year – ”I think there’s a lot of euthanasia that effectively happens in our hospitals.” Director of the Association of Salaried Medical Specialists, Ian Powell, disagreed (emphasis added) -
“The situation is much more complex than that . . . Sometimes continuing a treatment can prolong the agony for a patient, and not even keep the patient alive. By not prolonging the agony . . . even though the intent is not for the patient to die, it is sometimes a consequence.”
The proposed euthanasia bill as it stands in New Zealand currently advocates the right to die of a person who is suffering from a terminal illness likely to cause death within 12 months, or from an irreversible physical or mental condition that, in the opinion of the patient, makes life unbearable. However, the bill also states that the person involved must not be coerced into the decision, and must be mentally competent.
Whilst the ethical topic is too in-depth for discussion in this article, I want to address the thought that, perhaps, things will go further …
Alright, let’s examine what the situation is in other parts of the world where euthanasia is already legal. And does it have a connection to ‘after-birth abortion’?
There have been quite a few cases of passive euthanasia for newborns with mental disabilities. The most famous could be the ‘Baby Doe’ case, an incident which occurred in Indiana in 1982. The child was born with Down Syndrome, and an esophageal defect – any orally received sustenances would not reach his stomach. Surgery would have remedied the disorder but the parents and doctor chose not to operate. Instead, he received painkillers and starved to death over the period of a few days. Such discrimination would certainly not be common for a child with no mental disability. Soon after, the Reagan administration drafted the ”Baby Doe guidelines,” which demanded life-sustaining care for handicapped newborns. But soon after, this was opposed by the American Medical Association and eventually struck down by the Supreme Court.
In The Netherlands, euthanasia is so common, and so threatening that thousands of Dutch people carry ‘Anti Euthanasia Passports’ or ‘Declarations of Life’, because they are afraid of being euthanized. The ‘Declaration of Life’ card says:
“I request that no medical treatment be withheld on the grounds that the future quality of my life will be diminished, because I believe that this is not something that human beings can judge. I request that under no circumstances a life-ending treatment be administered because I am of the opinion that people do not have the right to end life.”
Families often convince their elderly relatives that they are a burden and pressure them into being euthanized. Or the elderly will feel guilty about being a burden on their families, and thus opt for death. In the Journal of Medical Ethics 1999 by Jochemsen & Keown, studies have shown that in 1995, 900 patients, or 1 in 5, had their lives ended without a specific request. Treatments (not to be confused with palliative care) were available for 17% of these patients.
Over the other side of the world, in Oregon, a recent study from the 2008 Summary of Oregon’s Death with Dignity Act released on 3 March 2009 states:
‘while 95% of patients requested euthanasia or assisted suicide for “loss of autonomy” and 92% for “loss of dignity” only 5% (3 people) requested it for “inadequate pain control.” It should be noted here that hospice care is not as well developed in Oregon as in other US states, or the UK.’
It is also true that hospice care is extremely slack in The Netherlands, and in other countries that have legalized euthanasia. This shows a lack of care and respect for the elderly, and indeed for those who are sick with treatable illnesses and conditions such as depression. Says philosophy professor Mark Foreman,
“according to a study of the British Medical Association, the state of palliative care and hospice care in Holland is very poor. Where euthanasia is an accepted medical solution to patients’ pain and suffering, there is little incentive to develop programs which provide modern effective pain control for patients.”
The Netherlands also permits euthanasia (or, a more apt term, ‘assisted suicide’) for those who suffer from depression. Again, disabled newborns (especially those with spina bifidia) are euthanized, simply being regarded as ‘better off dead’. We hear of other cases around the world of families who wished they had had their disabled child aborted, because prenatal screenings didn’t show any fetal abnormalities. (An example that springs to mind is the case of the Oregon Down Syndrome girl, whose parents were awarded $2.9 million after their child was non-diagnosed before birth.) This certainly makes me uneasy. I don’t want a law in New Zealand which will encourage the elderly and ill to feel like a burden. I don’t want parents to have the power to decide their child is too much of a hassle to keep. I don’t want doctors to decide whether their patient should live or die. Let us keep in mind the words of Pete Du Pont,
“From the Soviet gulag to the Nazi concentration camps and the killing fields of Cambodia, history teaches that granting the state legal authority to kill innocent individuals has dreadful consequences.”
This week a Parliamentary Inquiry into abortion on the grounds of disability was launched in the UK. This is a major opportunity for social justice for our community. We applaud Fiona Bruce MP, the Inquiry Chair, for this most welcome and important initiative to stop discrimination against the disabled community.
Ann Furedi, the chief executive of the British Pregnancy Advisory Service was quick out of the block to criticise the inquiry, labelling disability “tragic” whilst endorsing disability selective abortion up until birth and revealing her discriminatory attitude towards the disabled. This open letter is our response to her article.
Dear Ann Furedi,
In your article in The Telegraph, dated 31 January 2013, you go out of your way to criticise an important initiative from your government to promote the rights of the disabled. You take the opportunity to label a disability “tragic” whilst endorsing disability selective abortion up until birth and display a discriminatory attitude towards our community.
Saving Downs welcomes the UK Parliamentary Inquiry into abortion on the grounds of disability as an important social justice initiative for our community. Down syndrome is targeted for birth prevention in the UK under a national screening programme. Birth data from the UK shows that the national screening programme is mostly being used for the birth prevention of babies with Down syndrome, rather than birth preparation or life affirming care. The high termination rate for Down syndrome is a concern and is indicative of an underlying attitude of negative bias from the medical community and discrimination.
In your article you stated:
“We will all have different views on abortion for fetal abnormality. They are the most controversial of abortions and arguably the most tragic for often they involve wanted, planned-for pregnancies.”
Please understand Ann, that a disability is not tragic. Disabled people are not tragic; they are our fellow human beings. Like all, they have inherent dignity and value – just like you and me. They are not defined by their difference, but by their humanity.
Your attitude devalues the lives of all people with disabilities and indeed all human life, as none of us are perfect.
You rightly point out that parents who face an unexpected prenatal diagnosis have planned and wanted pregnancies. Well, the value and inherent dignity of that wanted child does not suddenly change on a basis of a genetic difference or disability.
The humane and compassionate response to parents in these situations is to provide life affirming support through to the birth of their child. That is why they are in the care of midwives: to provide nurturance and loving care for the births of their children. Taking wanted and planned pregnancies and then selecting those that get born because of their potential level of ability points to an ablest view of the world. Selecting who gets born based on their biological or genetic difference, such as is the case for Down syndrome and Spina Bifida for example, is eugenics. Do you support selective abortion for other biological differences such as sex, sexual orientation, race and ethnicity, or is it just for potential ability? Eugenics has no place in a civilised society Ann; it devalues those most worthy of our support.
You go on to state:
“But we can trust women to make decisions that are right and responsible.”
Now you are confusing issues. The inquiry is about abortion on the grounds of disability and whether this is discrimination. It is not about women’s abilities to make decisions. Any negative distinction in law on the basis of a disability is discrimination. The current abortion law in the UK and other countries such as New Zealand and Australia makes an exception for abortion solely on the basis of a disability. That is based on a view that the life of a disabled person is of less worth and therefore they have less legal protection under the law than their fellow human beings. That is discrimination, and it devalues the lives of all people living with a disability and their families.
You then go on to state:
“And we can trust doctors to act in ‘good faith’.”
OK, so now we see a disconnection with reality, or an attempt to brush over the obvious. There is a widespread understanding in the disability community that many doctors encourage women to take the lives of their unborn child on the basis of a diagnosis of a disability. It is not an issue confined to the UK, it happens in many countries including New Zealand. Every blog site that advocates on this issue has countless testimonies from mothers who have not been supported by their doctors when facing an unexpected diagnosis. The international birth data confirms this attitude of discrimination from the medical community.None of this is not say that many doctors provide life affirming support in these situations, as they should, and we are certainly most thankful for that. But, the negative bias towards terminations and discriminatory attitudes has to stop.
Given that you are the chief executive of the British Pregnancy Advisory Service, it seems incredible that you are not aware of the practice of your own profession.
You conclude with:
“The last thing doctors, or their patients, need is the scrutiny of an inquiry concerned, not with the care of women – but with the presumed political impact of people’s personal decisions.”
Now you are trying to push a different agenda.
This inquiry is exactly what the disability community needs: the removal of discriminatory laws against the disabled.
This inquiry is also exactly want parents facing an unexpected diagnosis need: a positive step towards a new life affirming environment where their children will be welcomed and supported with loving care and acceptance.
The time has come for the full recognition of human rights for the disabled and this inquiry is a welcome step in that direction.
Cross-posted from Mike Sullivan, spokesperson for Saving Downs, a group that advocates for people with Down Syndrome.
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.
This piece is cross posted from The Independent in the UK with additional reporting from ProLife NZ.
Down Syndrome (DS) is back in the news again with a discussion which was broadcast on ITV’s This Morning last week.
I think there are some big issues here which I will return to in a moment – however I need a moment’s indulgence to address a couple of errors of fact in the piece, which are unfortunately trotted out on every discussion about Down Syndrome.
Firstly that there are degrees of severity of the condition – there aren’t , you either have it or you don’t, it’s an extra copy of chromosome 21, differences in people who have Down Syndrome are the same as the differences in all of us, ones inherited from our parents.
Many talk of the ‘fact’ more parents of children with Down Syndrome separate – quoting a staggering figure of ‘50-70%’, in fact the opposite is true, Urbano and Hodapp (2006 & 2007)showed that parents of children with Down Syndrome actually had slightly lower incidence of divorce than parents of children without a disability.
The crux of the debate on This Morning was whether it was ‘right’ to terminate a pregnancy after IVF when the woman received a positive (or high chance) of Down Syndrome. At this point we wander into a maelstrom of issues and judgements; concern about abortion, views on older women accessing IVF, opinions on whether older parents can look after a child (and often people with DS are wrongly seen as ‘eternal children’), healthcare provision…I could go on.
Since the New Labour White Paper in 2003 ‘Our Inheritance, Our Future – realising the potential of genetics in the NHS’ changed policy so that all women (previously it was only those over 35) were offered screening for Down Syndrome, the message around screening has changed to one whereby it is a condition deemed so serious that it needs a national screening programme to deal with it. Given there is no treatment for Down Syndrome then this is, by definition, a programme to screen out. As a country we don’t screen for other conditions – Cystic Fibrosis for example could reduce life expectancy by 50 years but isn’t screened for, neither are Patau or Edwards syndrome.
Over the last few years life expectancy for people with DS has increased from 25 in 1983 to 60 today (National Down Syndrome Society USA). Medical advances have meant that early intervention, especially over heart defects, has made significant improvements. With positive change in educational inclusion and the end of institutionalisation, quality of life has improved significantly. I would in no way suggest these advances are perfect, however a national screening programme for Down Syndrome is a disproportionate response to the human race’s most common syndrome.
Often women who are presented with a high ‘risk’ of Down Syndrome, (it is often called a ‘risk’ not a ‘chance’) are on track to an almost inevitable termination. Society’s stereotypes of people with DS and its antipathy towards inclusion of those with learning difficulties in the workplace or socially (nine out of ten people have never invited a person with disabilities into their home for a social occasion) just pile on anxiety. 91% of positive diagnoses lead to terminations.
A society already struggling with a lack of faith in the human ability to change things, to successfully manage relationships and everyday life, is also likely to find it hard to cope with the perceived ‘risks’ of having a child with Down Syndrome. It’s likely to conjure up a cascade of resultant personal risks too; the risk of splitting up over the child, of being trapped, of failing to provide for the child properly, of not coping.
We’re now on the cusp of new, early, and more accurate blood tests in pregnancy for Down Syndrome. These tests, currently being rolled out in the US have even prompted some doctors, such as Brian Skotko (Massachusetts General Hospital) to ask if babies being born with Down Syndrome will disappear entirely. These tests will also have potential for many other chromosomal and genetic disorders – there needs to be an open public debate about what these disorders really mean for those who have them.
Public health screening with the express intent to remove people with Down syndrome from the population is divisive and a disproportionate response to potential quality of life. It also serves to exaggerate health problems and risks.
The history of the twentieth century is filled with examples of how people have been dehumanised and excluded; from pseudo-scientific IQ testing to extermination and institutionalisation. Today we have the chance to build something better. The challenge for society is to appreciate that differences are not deficits – a society that appreciates the talents and differences of everyone, is a society that can be truly both enlightened and progressive, focussing on what each and every one of us has the potential to achieve.
Spain’s justice minister, Alberto Ruiz-Gallardón, has announced that upcoming legislation reform of the country’s laws governing abortions will eliminate fetal disability as a basis for abortion.
The legislation, which would eliminate abortion-on-demand during the first fourteen weeks of pregnancy as established by the previous administration, would return to a “law of conditions,” under which abortion would not be penalized in certain specified cases, Ruiz-Gallardón told the Spanish publication La Razón.
However, Spain would not renew the old law in its entirety, said the justice minister, “because experience shows us that some of these aspects must be revised.” Asked which ones, he responded: “I anticipate one. I do not understand why the unborn are unprotected, permitting them to be aborted, because of the fact that they have some kind of handicap or deformity.”
“It seems to me to be ethically inconceivable we have lived so long with this legislation, and I think that the same level of protection that is given to an unborn child without any type of handicap or deformity should be given to those that are verified as lacking some of the abilities that other unborn children have,” added Ruiz-Gallardón.
The minister, who has been criticized for not acting to fulfill the People’s Party campaign promise to reform the abortion law, said that he anticipated introducing a bill on the matter by the end of the year.
According to statistics published by La Razon, 90% of disabled children in Spain are killed in their mothers’ wombs, a total of over 16,000 over the last five years.
An advocacy group for children with Down syndrome, Down Spain, hailed the proposal as a step towards recognizing the rights of the handicapped.
The organization stated “its satisfaction over the declarations made yesterday by the minister of justice,” opining that by such a measure “a true social change will be achieved because, for the first time, the lives of everyone in equality of conditions will be made possible.”
Ruiz-Gallardón, who has played the role of gadfly within the People’s Party in the past, in this case received the unequivocal support of the party’s current leader, Carlos Floriano.
Calling Ruiz-Gallardón’s statements “absolutely impeccable,” Floriano added that “we are betting on the defense of the rights of the weakest, so what the minister said coincides with the ethical and political convictions and principles of the People’s Party.”
Cross posted from LifeSiteNews.
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.