{"id":203297,"date":"2017-07-04T07:50:16","date_gmt":"2017-07-04T11:50:16","guid":{"rendered":"http:\/\/www.euvolution.com\/prometheism-transhumanism-posthumanism\/dispute-over-british-babys-fate-draws-in-pope-and-us-president-new-york-times\/"},"modified":"2017-07-04T07:50:16","modified_gmt":"2017-07-04T11:50:16","slug":"dispute-over-british-babys-fate-draws-in-pope-and-us-president-new-york-times","status":"publish","type":"post","link":"https:\/\/www.euvolution.com\/prometheism-transhumanism-posthumanism\/transhuman-news-blog\/human-genetics\/dispute-over-british-babys-fate-draws-in-pope-and-us-president-new-york-times\/","title":{"rendered":"Dispute Over British Baby&#8217;s Fate Draws In Pope and US President &#8211; New York Times"},"content":{"rendered":"<p><p>    Three courts in Britain agreed with the hospital, as did the    European Court of Human Rights, which last    week rejected a    last-ditch appeal by Charlies parents.  <\/p>\n<p>    But Pope    Francis and Mr. Trump have also weighed in, adding another    dimension to an extraordinarily thorny bioethical and legal    dispute that pits Britains medical and judicial establishment    against the wishes of the childs parents.  <\/p>\n<p>    Judges in the case have acknowledged    that the case highlights differences in law and medicine  and    an American willingness to try anything, however unlikely the    possibility of success  but have held that prolonging the    infants life would be inhumane and unreasonable. The case    echoes the one of Terri Schiavo, a Florida woman who was left    in a persistent vegetative state after a cardiac arrest and was    also the subject of a court battle.  <\/p>\n<p>    A Vatican spokesman, Greg Burke,     told Vatican Radio on Sunday that the pope had been    following the parents case with affection and sadness,    praying that their desire to accompany and care for their own    child to the end is not ignored.  <\/p>\n<p>    Italys top pediatric hospital, which is run by the Vatican,    told the Italian news agency ANSA on Monday that it would be    willing to take Charlie.  <\/p>\n<p>    We understand that the situation is desperate, said Mariella    Enoc, director of the Bambino Ges hospital in Rome, noting    that she had been in touch with British officials to signal a    willingness to take the patient, the agency reported. We are    close to the parents in prayer and, if this is their desire, we    are open to receiving their child at our structure for the time    it will take for him to live.  <\/p>\n<p>    Mr. Trump, who was not known to have previously expressed a    view on the matter,     wrote on Twitter on Monday that if the United States could    help, we would be delighted to do so.  <\/p>\n<p>    Both the pope and the president stopped short of criticizing    the court rulings or the hospital. Helen Aguirre Ferr, the    director of the White House office of media affairs, said Mr.    Trump had decided to speak out after he learned about this    heartbreaking situation. Mr. Trump has not spoken with the    family, she said, and does not want to pressure them in any    way.  <\/p>\n<p>    The president is just trying to be helpful if at all    possible, she added.  <\/p>\n<p>    Charlie was born on Aug. 4 with encephalomyopathic    mitochondrial DNA depletion syndrome. He is thought to be one    of only 16 children globally with the condition, the result of    a genetic mutation.  <\/p>\n<p>    Brendan    Lee, the chairman of the department of molecular and human    genetics at Baylor College of    Medicine, who is not involved in the case, said in a phone    interview that mitochondrial depletion syndrome has no cure.    Treatments involve different types of vitamin supplementation,    but none have been shown to definitively work through studies,    he said.  <\/p>\n<p>    Charlies parents, Connie Yates and Chris Gard, both in their    30s, have been waging a long and wrenching legal battle to keep    him alive. They have raised more than 1.3 million pounds, or    about $1.7 million, to help finance experimental treatment in    the United States. There is also an international campaign,    with an online     petition, and there have been street protests in front of    Buckingham Palace.  <\/p>\n<p>    Charlie has been treated since October at Great Ormond Street    Hospital, where doctors eventually decided that withdrawing    life support was the only justifiable option. Although    Charlies parents have parental responsibility, overriding    control is by law vested in the court exercising its    independent and objective judgment in the childs best    interests, the hospital said in a     statement laying out its position.  <\/p>\n<p>    Siding with the hospital were the     High Court, on April 11; the     Court of Appeal, on May 25; and the     Supreme Court of the United Kingdom, on June 8.  <\/p>\n<p>    The High Court ruled that Charlie would face significant harm    if his suffering were to be prolonged without any realistic    prospect of improvement. Moreover, it said the experimental    treatment, known as nucleoside therapy, would not be effective.  <\/p>\n<p>    Money is not at issue; an academic medical center in the United    States has offered to provide the experimental treatment. But a    neurologist at the hospital, who has offered to oversee the    treatment, told the court by telephone: I can understand the    opinion that he is so severely affected by encephalopathy that any attempt at    therapy would be futile. I agree that it is very unlikely that    he will improve with that therapy.  <\/p>\n<p>    Neither the hospital nor the neurologist was identified in    court documents, and the White House has declined to identify    either.  <\/p>\n<p>    The Court of Human Rights ruled last week that the British    courts had acted appropriately in concluding that it was most    likely Charlie was being exposed to continued pain, suffering    and distress, and that undergoing experimental treatment with    no prospects of success would offer no benefit, and continue to    cause him significant harm.  <\/p>\n<p>    The case has drawn attention to important differences in legal    systems.  <\/p>\n<p>        Claire Fenton-Glynn, a legal scholar at the University of    Cambridge who studies childrens rights, said that under    British law, the courts were the final arbiter in medical    disputes about the treatment of children.  <\/p>\n<p>    She noted a 2001 case of conjoined    twins, Jodie and Mary, who were born sharing an aorta.    Separating the twins would lead to the death of the    weaker twin; if they were not separated, both would die. A    court ruled that the twins should be separated against the    wishes of their parents; as expected, one died.  <\/p>\n<p>    Courts in the United States are less inclined to get involved    when there are disputes between parents and doctors, said    Professor Moreno of the University of Pennsylvania, stressing    that it was usually left to doctors, in consultation with    parents, to decide on a childs treatment.  <\/p>\n<p>    He noted the case of     Baby Jane Doe, who was born in 1983 with spina bifida and whose parents    declined to approve surgery to prolong her life. That case led    to a law, signed by President Ronald Reagan, that defined    instances in which withholding medical treatment from infants    could be considered child abuse, but also provided that in    certain cases doctors and parents might choose to withhold    treatment from seriously handicapped babies when such action    would merely prolong dying.  <\/p>\n<p>    G.    Kevin Donovan, the director of the Pellegrino Center for    Clinical Bioethics at Georgetown University Medical Center and    a professor of pediatrics, said that in the United States, if    parents insisted on continuing life-prolonging treatment    against a doctors advice, the child would simply be    transferred to another institution willing to comply with the    parents wishes.  <\/p>\n<p>    It doesnt seem to be a supportable position morally or    ethically, he said of the stance taken by the hospital in    London, adding that what is legal and what is ethical are not    always the same.  <\/p>\n<p>    In the Schiavo case, her husband, who was her legal guardian,    wanted to have her feeding tube removed, but her     parents disagreed, setting off a seven-year fight that    ended in 2005, after courts ruled in the husbands favor.        Life support was removed from Ms. Schiavo, who died at 41.  <\/p>\n<p>    In that case, too, the pope, then John Paul II, and the    president, George W. Bush, weighed in. Mr. Bush signed an        act of Congress allowing federal courts to intercede in the    case. But their interventions did not ultimately affect the    outcome.  <\/p>\n<p>    There was no immediate response to Mr. Trumps statement from    Charlies parents, who last week appeared to accept the    finality of the courts rulings. Photographs of the couple    sleeping with their sick child have circulated on social media    recently.  <\/p>\n<p>    We are really grateful for all the support from the public at    this extremely difficult time, Ms. Yates said on Friday.    Were making precious memories that we can treasure forever    with very heavy hearts. Please respect our privacy while we    prepare to say the final goodbye to our son Charlie.  <\/p>\n<p>    There was also no immediate reaction from the hospital.  <\/p>\n<p>    In Charlies case we have been discussing for many months how    the withdrawal of treatment may work, the hospital said.    There would be no rush for any action to be taken    immediately. It added that it would consult the family and    that discussions and planning in these situations usually take    some days.  <\/p>\n<p>        Follow Dan Bilefsky @DanBilefsky and        Sewell Chan @sewellchan on        Twitter.      <\/p>\n<p>        Reporting was contributed by Aneri Pattani and Roni Caryn        Rabin from New York, Michael D. Shear from Washington, and        Elisabetta Povoledo from Rome.      <\/p>\n<p>      A version of this article appears in print on July 4, 2017,      on Page A1 of the New York      edition with the headline: Dispute Over British Babys      Fate Draws In President and Pope.    <\/p>\n<p><!-- Auto Generated --><\/p>\n<p>Read the original here:<br \/>\n<a target=\"_blank\" href=\"https:\/\/www.nytimes.com\/2017\/07\/03\/world\/europe\/uk-trump-pope-francis-charlie-gard.html\" title=\"Dispute Over British Baby's Fate Draws In Pope and US President - New York Times\">Dispute Over British Baby's Fate Draws In Pope and US President - New York Times<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p> Three courts in Britain agreed with the hospital, as did the European Court of Human Rights, which last week rejected a last-ditch appeal by Charlies parents. But Pope Francis and Mr <a href=\"https:\/\/www.euvolution.com\/prometheism-transhumanism-posthumanism\/transhuman-news-blog\/human-genetics\/dispute-over-british-babys-fate-draws-in-pope-and-us-president-new-york-times\/\">Continue reading <span class=\"meta-nav\">&rarr;<\/span><\/a><\/p>\n","protected":false},"author":9,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[27],"tags":[],"class_list":["post-203297","post","type-post","status-publish","format-standard","hentry","category-human-genetics"],"_links":{"self":[{"href":"https:\/\/www.euvolution.com\/prometheism-transhumanism-posthumanism\/wp-json\/wp\/v2\/posts\/203297"}],"collection":[{"href":"https:\/\/www.euvolution.com\/prometheism-transhumanism-posthumanism\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.euvolution.com\/prometheism-transhumanism-posthumanism\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.euvolution.com\/prometheism-transhumanism-posthumanism\/wp-json\/wp\/v2\/users\/9"}],"replies":[{"embeddable":true,"href":"https:\/\/www.euvolution.com\/prometheism-transhumanism-posthumanism\/wp-json\/wp\/v2\/comments?post=203297"}],"version-history":[{"count":0,"href":"https:\/\/www.euvolution.com\/prometheism-transhumanism-posthumanism\/wp-json\/wp\/v2\/posts\/203297\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.euvolution.com\/prometheism-transhumanism-posthumanism\/wp-json\/wp\/v2\/media?parent=203297"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.euvolution.com\/prometheism-transhumanism-posthumanism\/wp-json\/wp\/v2\/categories?post=203297"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.euvolution.com\/prometheism-transhumanism-posthumanism\/wp-json\/wp\/v2\/tags?post=203297"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}