Science and Technology : DOWN SYNDROME CURE?

Discussion in 'Science and Technology' started by Kemetstry, Aug 12, 2013.

  1. Kemetstry

    Kemetstry going above and beyond PREMIUM MEMBER

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    Could it be a 'cure'? Breakthrough prompts Down syndrome soul-searching

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    JoNel Aleccia NBC News
    In the 14 years since her daughter, Rachel, was born with Down syndrome, Jawanda Mast has always been clear that she’d change the condition if she could.
    “I couldn’t love her more, but I would give almost anything to take away that extra chromosome,” the Olathe, Kansas, mom wrote on her blog. “While I may know she’s perfect, the world doesn’t.”
    But when Massachusetts scientists announced recently that they’ve found a way to silence the chromosome that causes trisomy 21, also known as Down syndrome, it rocked Mast – and the rest of the disability community.
    “It’s so hard to imagine you could actually do that,” Mast told NBC News. “Yes, I would take away the challenges, I would take away the health risks. But now I also stop and say, ‘Oh my goodness, how would that impact the rest of her?’”
    Hailed as a “cure in a Petri dish,” the research by scientists at the University of Massachusetts Medical School is the first to find that it may be possible to switch off the genetic material responsible for the condition that causes cognitive delays, heart defects and shortened lifespans.
    The development is expected to help create new treatments for problems caused by Down syndrome -- but it also raises the prospect of eliminating the condition entirely.
    Since it became public last month, the breakthrough has sparked a firestorm of reaction among parents, advocates, ethicists and people with the condition, said Dr. Brian Skotko, a medical geneticist and co-director of the Down Syndrome Program at Massachusetts General Hospital.
    “This research really launches a million questions,” Skotko said.
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    Chuck France / Getty Images for NBC News
    At left, Rachel Mast, 14, is training with other students at her middle school to become student ambassadors to incoming sixth-graders.
    On one hand, almost everyone agrees there’s a need for treatments to help the 250,000 people in the U.S. living with Down syndrome, including the nearly 7,000 babies born with it each year.
    On the other hand, it’s unclear what costs there may be to shutting down the mechanism that creates people who offer lessons in patience, kindness -- and what it means to be human.
    "If Down syndrome were completely cured, the world would lose something from the absence of that culture," said Skotko, who has a sister with the condition. "There is something positive that people with Down syndrome contribute to the world."
    Brian Long of Boulder, Colo., is the father a 19-year-old son with Down syndrome. He welcomes the research, which could lead to treatments to boost Connor’s intellectual abilities and speaking skills and prevent disease. But he also wonders how tinkering with chromosomes could alter the essence of his son.
    “So much of Down syndrome does impact the personality and character of the person,” said Long, 54. “In Connor’s example, we’ve known him for 19 years. We don’t want a wholesale change.”
    Advocates like Julie Cevallos, vice president of marketing for the National Down Syndrome Society, emphasize that the research is still early.
    “When you go as far as a ‘cure,’ that’s when folks step back and go: ‘We’re not looking for a cure. We’re looking to help and support people with Down syndrome live healthy and productive lives,’” said Cevallos, mother of a 5-year-old with the condition.
    David Egan, a 35-year-old Vienna, Va., man with Down syndrome, said he applauds the progress in part because it might help with some of the social stigma that comes with the disorder. He has friends who've been made fun of because of their disability, who have a hard time coping with the condition.
    “I’m not saying to shut it down completely,” said Egan, who has worked for 17 years in the distribution department at Booz Allen Hamilton, the technology consulting firm. “I would say just to understand more about it.”





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  2. Kemetstry

    Kemetstry going above and beyond PREMIUM MEMBER

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    bot






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  3. Angela22

    Angela22 Well-Known Member MEMBER

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    Sometimes, I really wonder about mankind. Why deny a cure for something that is certainly a disability?

    It kind of reminds me of when I was watching this documentary on deaf people, and they were disgusted with the idea of a cure for deafness, as if to be deaf is how men and women were created to be.

    Kinda strange sounding to me.
     
  4. Kemetstry

    Kemetstry going above and beyond PREMIUM MEMBER

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    It's all about money and sometimes pride. They don't want to see themselves as handicapped





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