parents of woman with down syndrome, 21, cannot have her sterilized, rules judge

by Daniel Miller from the Daily Mail (UK):
The parents of an 'affectionate' 21-year-old woman with Down's syndrome have been forbidden from having her sterilised despite their concerns she could fall pregnant.In a landmark ruling at the Court of Protection in London, Mr Justice Cobb concluded that such a procedure would be 'disproportionate'.He said the case engaged important human rights considerations and that  the woman, referred to as K, lacked the capacity to understand and weigh up the options for herself. The parents feared their daughter, who does not have a boyfriend and had expressed no interest in having one, could easily be taken advantage of. But Mr Justice Cobb said there were less restrictive methods of 'achieving the purpose of contraception' which should be tried first.

He added it was in the woman's best interests that he should 'bring as much clarity to medical treatment issues' as he could.

He wrote in a statement: 'The issue which divides the parties is whether I should declare in these proceedings at this stage that it is not in the woman's best interests to be the subject of a sterilisation procedure'.

'No-one can doubt the seriousness and significance of a sterilisation procedure. Further surgery would be required to reverse it, and then only with a moderate prospect of success.'

Mr Justice Cobb said the woman was part of a 'loving' and 'supportive' family and said he had read 'nothing but praise' for her parents.

The parents, referred to in court as Mr and Mrs K, had gone to see a specialist who had originally supported the idea of sterilisation but a second expert had suggested other forms of contraception.

The judge added: 'Although Mr and Mrs K expressed concerns that K is occasionally 'tactile' and 'overfamiliar', that she has begun to be more aware of the 'opposite sex', and is vulnerable to sexual exploitation.

'I note that K is well-supervised at home and at college; there is no evidence she is seeking a sexual relationship.'

The judge said the local authority had begun proceedings in the Court of Protection, which is part of the High Court and analyses issues surrounding the care and treatment of sick and vulnerable people.

He said he had made a declaration under the provisions of mental capacity legislation after the woman's parents disagreed with a local authority - and medics - about the best way 'to achieve contraception'.

He added: 'I have sought to achieve the right balance between protection and empowerment.

'It is my judgment that sterilisation would be a disproportionate (and not the least restrictive step) to achieve contraception for the woman in the future.'

The judge said risk management was 'plainly' better than invasive treatment and less restrictive.

Mr Justice Cobb added: 'It is in the woman's best interests that I should make this declaration now; I do not believe that it is in her best interests that this issue should be left unresolved.'

And the judge said the woman's parents had concerns about how pregnancy would affect their daughter.

'Have become increasingly concerned that as K becomes older their ability to control and supervise aspects of her life will be reduced,' he added.

'Were she to become pregnant at any time in the future they believe this would have a seriously adverse effect upon her.'

Read more: http://www.dailymail.co.uk/news/article-2279562/Parents-Downs-syndrome-woman-forbidden-having-sterilised-despite-fears-taken-advantage-of.html#ixzz2LNOq4qgh

cigarette barbarity for child with Down syndrome

from The Telegraph India:
A two-year-old with Down syndrome is battling for life after being allegedly burned with cigarette butts by a woman faith healer who inflicted the torture in the name of curing him.

“I was shocked to see fresh scars of burning by cigarette butts on the child’s tummy. I counted 11 such scars on his body and there were several others that were caused several months back. This shows he has been going through this for quite some time,” said Dr Abdul Rasheed, the paediatrician treating the child.

The burning continued over months on the toddler, born to poor and illiterate parents from Kangan in central Kashmir, Rasheed said. Other doctors recalled having come across several similar cases of torture inflicted by peers, spiritual leaders often involved in occult practices.

In this case, too, the parents have not approached the cops so far. “No case has been registered as the family is unwilling to approach the police. In fact, they virtually worship her (the faith healer) and are not willing to name her,” Rasheed said.

The family has admitted taking the boy to the woman peer in Bonigam village, not far from their home in Murgund village in Kangan.

But Rasheed said the family was reluctant to reveal the ordeal to avoid landing the woman in trouble.

Controversial pre-natal Down's syndrome testing gets go-ahead in Switzerland raising fears of a spike in abortions

The test involves screening blood samples from the pregnant woman for the presence of foetal Down's syndrome

from the Daily Mail by Claire Bates:
A new prenatal test for Down's syndrome has been given the green light in Switzerland amid controversy over whether this will lead to more abortions.
Testing will be available there from mid-August following a decision by the national agency for therapeutic products, according to a Swiss newspaper.
The test involves screening pregnant women's blood samples for the presence of foetal Down's syndrome, which is also known as trisomy 21.

The German-firm LifeCodexx described the procedure, marketed as PrenaTest, as a 'risk-free alternative to common invasive examination methods such as amniocentesis'.

It claims that the test can detect 95 per cent of cases if it is performed in the first trimester.

The company said demand is high in Switzerland from doctors and expectant mothers. The test will also be marketed in Germany, Austria and Liechtenstein, according to the German-based firm's website.

The Swiss national health insurer Santesuisse and the Swiss gynaecological society are happy for the cost of the test to be reimbursed as part of standard medical cover if it proves successful, according to the Neue Zuercher Zeitung am Sonntag.

However, the international federation of Down's syndrome organisations has objected to such testing at the European Court of Human Rights.

The federation, grouping 30 associations in 16 countries, said in June that the Strasbourg court should 'recognise the human condition and protect the right to life of people with Down's syndrome and those handicapped'.

Down's syndrome is caused by having an extra copy of chromosome 21.

It is a life-long condition that affects a baby's normal physical development and causes moderate to severe learning difficulties.

Women are allowed to have abortions after the 24th week of pregnancy if their baby has Down's.

The risk of having a baby with Down's increases as a woman gets older.

Invasive procedures currently used for prenatal diagnosis - in the 16th week of pregnancy - pose a one per cent risk of miscarriage.

Since 2003 all pregnant women in the UK have been offered screening for Down's syndrome. However, only those who are judged to be 'high risk' can then opt to have a diagnostic test, so not all cases are picked up.

From 2007 to 2008, 1,843 cases of Down’s syndrome were diagnosed during pregnancy, and 743 babies were born with the condition.

There is currently no screening programme during pregnancy for other conditions such as Cystic Fibrosis or Patau's syndrome.

Read more: http://www.dailymail.co.uk/health/article-2181034/Controversial-Downs-syndrome-testing-gets-ahead-Switzerland.html#ixzz22PIpWtSm

The Politics of Down Syndrome

From booktrade.info:

Kieron is father to Tanzie (aged 6, who has Down syndrome). He was in the audience at a Frankie Boyle show, and was surprised to hear stereotypes of people with Down syndrome peddled as humour, an altercation took place during the show, and afterwards his wife Sharon wrote a blog about the evening, which resulted in major press coverage.

Are we a more accepting society than ever before? Is there still a 'them and us' division between the disabled and 'everybody else'? The Politics of Down Syndrome looks at how we got to where we are, from the racist roots of its identification to the search for a blood test to screen for the condition today. Down syndrome is the most common form of learning disability, shared by all classes and races, yet it's one we rarely address our feelings about, head on. This book, direct and questioning, takes a view about where we go from here and the opportunity for society to fully enjoy the benefits of being inclusive.
 
Fascinating - at last a concise, well written examination of Down's syndrome which not only presents a historical perspective and political analysis but has the added advantage of deriving from personal experience.
Andy Merriman, Writer and broadcaster, co-author of BBC Radio 4 drama Minor Adjustment
 
This is a timely book that is as important as it is unusual. The 'problems' of people with Down syndrome are often discussed – less so those of the world they find themselves in. Political decisions that profoundly affect (or even prematurely end) the lives of people with Down syndrome are taken by policymakers with little knowledge of the condition and almost always without asking people with Down syndrome what they think. This book highlights many of the prejudices behind these decisions, and many of their consequences. In so doing, it provokes a debate that is urgently needed – one that is not just about Down syndrome but about human differences, human diversity and the defence of individual human rights.
Frank Buckley, CEO Down Syndrome Education International.
 
Author Information:
Kieron is father to Tanzie (aged 6, who happens to have Down syndrome) and was recently involved in the incident with comedian Frankie Boyle. He is MD of The Book Depository, the UK's largest specialist online bookshop.
 
Kieron is a Trustee of Down Syndrome Education International the world's leading academic research based Down syndrome charity http://www.downsed.org/ all royalties from the book will be donated to the charity.