Dissecting Sci-Fi Fears

This content was created by GHION.AI . This content was uploaded by GHION.AI . This is a YouTube video titled "Dissecting Sci-Fi Fears" created on November 29, 2017, featuring a discussion with Anne Wojcicki about the ethical implications and understanding of the human genome, CRISPR technology, and the importance of public engagement in science.
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I think there's a Gattaca world that is more science fiction than reality. So we know, like, we know crispr. I know cystic fibrosis, but I can't cure people yet with cystic fibrosis. So there's a long world before I'm going to, like, have, you know, you know, a homogenous society of, like, everyone's choosing this one set of phenotypes. That said, like, I think this is the ethical discussion. Like, as, like, I look at 23andMe part of our mission. Like, I want to understand the genome. Like, what keeps me up at night is like, we have this code in us and we don't understand it. How can everybody sleep? Like, it's just like, I really want to understand. It's so interesting. And the fact that it goes back to the beginning of time, that's so cool. And so I want us to be the ones who are understanding and deciphering the genome. There's all kinds of ethical questions about crispr and how are you going to use this information? And there are realistic, you know, issues like we have that need to be discussed. But I look at our job as, like, I want to understand it.
So I want to build on that. Because one of the concerns I've had early, early in the early days, I was offered to participate and get my genome done, which I have not done yet. Okay, well, here was the issue is I'm concerned that do we actually really understand it enough to be giving meaningful data? Am I going to, like, at what? The rate of knowledge increase of them in this world is super fast, and we still are quite far from really understanding it. I mean, you're saying, how can we sleep at night? Because we don't understand it. And that's my concern is we don't understand it. And am I getting information that is really accurate?
So there's information we toggle in some ways, like, this was a regulatory question. In some ways we toggled between, oh, my God, your data is so actionable and so scary. How could you give it to people and then like, oh, my God, you know nothing and it's meaningless. Where I was like, you know, pick an argument, people. Like, either we're too scary or we're meaningless. The reality is, like, it's the early days. Like, we know cystic fibrosis mutations, and I know BRCA mutations, and I know, like, some of the familiar hypocholesteremia mutations. Like, there's certain mutations we feel really good about. There's an entire world in the whole genome sequencing department. That makes me nervous. And it's VUS, VUSes, so variants of unknown significance. So I might, like, I used to give this talk that was called Deleterious Me. Like, when I got my whole genome, like, all the different ways I should be dead, but I'm not. And so you start to follow my mutations. Like, I had this mutation and I look, and you can look in some of the genetic databases online and be like, wow, there's like all these really terrifying diseases associated with this mutation. So to me, the fact that we don't know everything is, like, symbolic of life. Like, we don't know everything about everything, but it doesn't mean we shouldn't have it. Like, to me, it's like the journey to actually starting to understand what the genome means is only going to come by starting to actually explore it. And I really have this belief, like, everyone can be a scientist. My dad, like, my number one takeaway from the particle physicists is that in 1991, 1992, my dad ran something called the Superconducting Super Collider, and it got shut down by the government. And it was going to be the largest giant accelerator smasher ever. And part of the reason why it got shut down is because the physicists couldn't articulate what the value proposition was. And all the scientists, like, I repeat all the time, you hurt yourself by wearing the white coat and using big words and talking down to people. Of course, the average population believes more in Gwyneth Paltrow than they do at anyone at Stanford because she speaks their language. And it's like, it drives me crazy. Like, we have to empower people and be like, you know what? Be honest. We don't understand most of the genome, but you can all still understand it. And it's beautiful and it's fantastic. And the whole journey of science is the fact that we don't know. That is what inspires all of us to be scientists, is, like, to figure it out. There's nothing better. My two great moments are the birth of my children and the results of an experiment. Did it work? Same thing with my children. Did they work? But I just think, for me, the fact that's an unknown is the beauty of it. And we're all gonna solve it. And. And all of us, like, every single person on this planet should be interested in it. It's about them. And I really, like, I really. I so want scientists to embrace this idea of, like, everyone can be a scientist. You don't need a degree like we can all learn. And the more that we actually get, like, you know, the person stocking shelves at Walmart to understand CRISPR and what's happening and gravitational waves, the more we're going to get funding, the more we're all going to be connected, the more we're going to actually advance society. So I really like, to me that's an opportunity we don't know. And I think medicine and healthcare in general would be so much better if people actually just admit it. Like, we just don't know most of these things.
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