Down Syndrome, Jamie, London discussed on Amanpour

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Automatic TRANSCRIPT

And the way that we're designing these systems in the future. Aren't we valuing that person's life less than in a way, the compared to a much more perfect or normalized personal without any of the possibility of getting that, right? It's such a valid, and it's such an important question. And I've spoken with lots of down family families in preparation of this of this book, and certainly for any child that exists with down syndrome. They have the absolute right to be given every opportunity to thrive like everybody else and many parents with down syndrome feel that their children are true blessings, greater blessings, then and other children, and they are they are right. And so I would hate for people to feel that that what I'm talking about in the book and elsewhere is any way denigrating. With down syndrome or other disorders. But we have to flip the question because the question that parents are going to be asking is you have fifteen pre implanted embryos, and you could pick to implant any one of them, and you have all of this information. And you know, let's say two of those embryos have down syndrome, would you if it was a choice, would you affirmatively? Choose to implant the embryo with down syndrome when down syndrome, we know. I mean, we know all the high functioning children with down syndrome. There are lots of health risks associated with down the lifespan of people with down syndrome is on average less than than than everybody else. And when I framed the question that way to down parents, it's a different kind of conversation. But I'm really mindful that I because if I'm saying or if the implication of what I'm writing about is that we are going to have less incidence of down syndrome in the future. Which is just a fact. It's already happening. What does that mean? What's the message to people who already have down syndrome, and we just really need to be incredibly sensitive on those on those issues who owns our jeans, and one of the things that is underlying all of those is that we all have to be screened. We all sat right have it in a lab, etc. Cetera who owns I guess the parts of me that make me who I am. Right. And how do I have some atonomy right giving that away? So the easy answer. But it's too easy is obviously you own your jeans, and no one can take them from you. And yet we have ten million people who've done their cheap, cheek swabs and signed a little form and sent their genetic material to companies in many cases with no protection. And that these companies are then selling your genetic information to big pharma. And that's. A real issue. People don't recognize that your genetic information is more valuable to you than your Bank information of your credit card information because in the United States, we have a genetic information nondiscrimination act which protects you against discrimination in your health insurance, but not in your life insurance. So imagine if you sent in your cheek swab and your life insurance company buys it. And they know more than, you know, about when you may die whether you're likely to have a long life or a short life, that's really valuable information. And so a country like China that has very poor privacy protections could conceivably have a tremendous advantage in acid accessing these big data pools. And so there's a conflict between the personal need for privacy. And the societal need for this information to be shared the reason why I've written this book is that we need to begin imagining where we're going because we have huge decisions that we're going to need to make now. And we're really going to need to think deeply about who. Are we what are our values? How are those values expressed in the decisions that we are making today that will in many ways determine how these technologies play out in the future? Jamie mental. Thanks so much for joining us. My pleasure. Provocative. Indeed, that's all we have time for thanks for what chain by from London.

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