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Posts Tagged ‘sindrome di Down’

Eugenetica ed altri malanni – o della questione antropologica come questione sociale
Alessandro Canelli | novembre 13, 2010 11:41 am

Recentemente ha fatto scalpore la frase del professore che voleva il ritorno alla rupe tarpea per eliminare i disabili.
Ma mentre imperversava il tormentone mediatico ho vissuto una somma di piccole vicende che mi hanno toccato un po’ più da vicino. (altro…)

Annunci

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Domenica, mentre ero ancora via per lavoro, una persona ha chiamato a casa mia e dopo essersi down_syndromeassicurata che era proprio il mio indirizzo, ha detto che Ivan era morto e che Lunedì ci sarebbe stato il funerale a San Savino. Io ci sono andato, sono arrivato un po’ in ritardo e poi, alla fine, sono quasi scappato come un ladro. Alla messa, tanta gente che non vedevo da tanto, bellissimi preti (alcuni fondamentali per me) e tante suore giovani (tante che non ci credevo). E il rumore solito di una messa con gli ospiti della Casa. Alla Casa della Carità ho fatto l’obiettore per 20 mesi. E’ stato più di 20 anni fa. Poi non mi sono più fatto vedere: stupide incomprensioni con le suore, un periodo brutto della mia vita e la necessità di chiudere gli studi e trovare da lavorare. Insomma ho rubato un po’ di me stesso agli altri e mi sono un po’ comportato da … mongolo, come avrebbe detto Ivan. Ivan non era più lui da un pezzo, ma io non l’avevo più visto.

Quando mi hanno detto di Ivan, ho ripensato a quel periodo e  mi è venuto in mente quel passo del Vangelo che dice “quello che avrete fatto a questi piccoli l’avrete fatto a me”. E allora pensavo, applicando arbitrariamente la proprietà transitiva: e quello che loro, quei piccoli, hanno fatto a noi? Anche quello è stato fatto da Lui? E mi sono cullato nel pensiero che quando io e Ivan cantavamo insieme le canzoni della Formula Tre mentre gli facevo il bagno, ci fosse anche Lui a cantare con noi, stonato uguale. (altro…)

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… the specter of fetuses being selectively targeted for elimination also down_syndromehas the potential to disturb solid supporters of abortion rights. (…) About 90 percent of women who learn they are carrying a fetus with the extra 21st chromosome that causes Down syndrome choose an abortion. Studies have shown that many women choose to abort for diagnoses of less serious conditions. (…) doctors screen embryos for a high risk of developing breast cancer or arthritis, and implant only embryos with the desired genetic makeup.
The questions may only become murkier if testing extends to traits like homosexuality or intelligence. (…) The rhetoric of “choice,” however, can take on a more troubling resonance when it comes to selecting children with new reproductive technologies, disabilities rights advocates say. “It so buys into this consumer perspective on our children,” said Marsha Saxton, a senior researcher at the World Institute on Disability in Oakland, Calif., who is an abortion rights supporter.

New York Times – May 13, 2007 – By AMY HARMON

Genetic Testing + Abortion = ???

SARAHLYNN LESTER, 32, considers herself a supporter of abortion rights. She gives money to the National Abortion Rights Action League and volunteers for Planned Parenthood.
But as a woman who continued a pregnancy after learning that her child would have Down syndrome, she also has beliefs about the ethics of choosing, or not choosing, certain kinds of children.
“I thought it would be morally wrong to have an abortion for a child that had a genetic disability,” said Ms. Lester, a marketing manager in St. Louis. (altro…)

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Per chi non lo sapesse, è morto di recente il figlio maggiore, che era portatore di gravi handicap, di David Cameron, leader conservatore britannico. Le riflessioni di Cameron e della moglie  sul loro rapporto col figlio, hanno, tra l’altro, originato questo editoriale bellissimo.

I too am the father of a child with a congenital disability – my younger daughter, Domenica, has trisomy down_syndrome21, also known as Down’s syndrome. When she was born, an acquaintance who had a child with cerebral palsy told me: “Your problem won’t be that you will not love your new daughter, but that you will love her too much.” He was right, of course: it was a salutary warning not to neglect the needs of siblings. (…)

Nine-year-old Daisy entered hospital in 2005 with a tooth infection, which turned septic. The hospital failed to supply the most basic medical care, giving Daisy neither food nor liquid in sufficient quantities. When she began gasping for breath the hospital told the parents that she would be transferred to intensive care, but this never happened. (…)

It turned out that this was not an accident, but deliberate, and an official report on the case is being prepared by the ombudsman. As Daisy’s mother, Amanda Healy, told me: “The staff later admitted to us that they had ‘misjudged her quality of life’.” In other words, they had acted under the belief that Daisy – who loved and was loved by her parents and who, in Amanda’s words, “adored just waking up in the morning” – had a life not worth living and therefore not worth fighting to preserve.

From The Sunday Times – March 1, 2009
Ivan Cameron and the meaning of life
Dominic Lawson

Death is the great reconciler. It was only a few months ago that Gordon Brown savagely insinuated that David Cameron had been publicising his son’s disability for political ends: “I haven’t served my children up for spreads in the papers . . . My children aren’t props. They’re people.” Yet the prime minister’s unprecedented parliamentary eulogy on the death of six-year-old Ivan Cameron was as sincere as anything that can ever have been said in that chamber, heightened as it must have been by the recollection of the death of his own firstborn. (altro…)

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tettoTrovato su www.amiciziacristiana.it – scritto nel 1985, ma sempre attuale.

Dionigi Tettamanzi

DIAGNOSI PRENATALE E ABORTO SELETTIVO

Non sono di oggi i problemi etici legati alla diagnosi prenatale. Oggi però, assumono aspetti nuovi, che ne rilevano, insieme alla complessità, la singolare importanza e urgenza. Al punto che la consultazione genetica, nella nuova situazione che si è venuta a creare, costituisce oramai uno dei maggiori campi della preoccupazione e della riflessione morale. (altro…)

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down_syndromeas prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity. (…)

Many participants in the ad-hoc movement describe themselves as pro-choice. Yet some see themselves as society’s first line of defense against a use of genetic technology that can border on eugenics.

May 9, 2007
The DNA Age – Prenatal Test Puts Down Syndrome in Hard Focus – By AMY HARMON

DETROIT – Sarah Itoh, a self-described “almost-eleven-and-a-half,” betrayed no trace of nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.

She likes to read, she said. Math used to be hard, but it is getting easier. She plays clarinet in her school band. She is a junior girl scout and an aunt, and she likes to organize, so her room is very clean. Last year, she won three medals in the Special Olympics.

“I am so lucky I get to do so many things,” she concluded. “I just want you to know, even though I have Down syndrome, it is O.K.” (altro…)

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down_syndromeUn articolo dal Guardian nota che al migliorare delle condizioni di accoglienza ed integrazione, nonostante l’aumento dell’utilizzo degli strumenti di diagnosi prenatale, sono aumentati i bambini nati con sindrome di Down (o bisognerebbe dire i bambini lasciati consapevolmente nascere nonostante le diagnosi prenatali).

Allora dove sta il punto? Forse sta proprio nel fatto che se tutta la comunità se ne fa carico, i disabili diventano improvvisamente degni di esistere e non esseri da eliminare, indegni della vita.

Ovvero, il punto non sta in loro ma in noi-“normali”.

Stesso argomento su Avvenire 28/11/2008

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More babies with Down’s syndrome born as attitudes change
Facilities in mainstream schools mean diagnosed children have brighter futures than 20 years ago

* Sadie Gray and agencies
* guardian.co.uk, Monday November 24 2008 10.08 GMT

More babies with Down’s syndrome are being born today than before pre-natal testing became widespread, as perceptions of the condition change.

In 1989, the year screening was widely introduced in the UK, 717 babies with Down’s syndrome were born. In 2006, the last year for which figures are available, 749 were born.

The numbers had fallen in the years following the introduction of testing, to 594 in 2000. (altro…)

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