tv Synthetic Biology CSPAN May 5, 2016 5:40am-7:38am EDT
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increased research and development so allegis done by the agency's or the methodology so it is an incredible opportunity to leverage the advocacy council with that polling data into those conversations and we have been talking about this for a long time and i think the book gives a lot of credibility to come back to our city government to talk about what needs to happen.
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may be ethical, where the rewards whether it's financial, political, whatever, the end of the day could be a cure for a very sous busies? so what is the red line? not the obama redline but a real red line. >> the line that i draw personally is heritability. i have no problem with gene therapy, the kind that restores the way a person is, was, thought they were. and they are doing a lot of work on tumor analysis, and there's all this stuff about the genome of the cancer as opposed to the genome of the person. and then if they can do an
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intervention in there, it might be away towards curing cancer, which would be, i would think great. i prefer to keep it that one simple line, because it is simple. and i am willing to give up, i'm willing to disappoint a very few people who could not have related children without, you know, a genetic intervention of that kind. there are very few of them. there are not many. and it would disappoint them. i don't think that, i think that the consequences of opening up the society to having heritable genetic alterations are
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horrendously wrong and wide, potentially widespread. that's a line you can draw. when it comes to modified fish, you know, glowing fish in tanks, glowing plants, i'm not sure plans on the street, i don't like them myself but the are much more complicated discussion that we could have. i just want us to have a discussion to make a conscious decision. i don't want individuals, no matter how well-intentioned they may think they are, to run roughshod over the rest of us. so we talk. >> to add what pete said, that
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line that pete just described, yes to genetic modification in existing patients who can consent to it and all that, if f it state and especially if the committed accessible and not super expensive so you don't know, most of us can't afford it, great, but not just pete but actually many sciences, and the loss of dozens of countries and international treaty from the council of europe, they draw that line that pete just described where we are not going to modified genes that are passed down to children come to future generations. the reason for are the ones teachout on the final slide, almost final slide of not safe. and then jumping down to that last point, opens the door to new kinds of discrimination, inequality, a new high-tech genetics and that's not the road
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we want to go down. [inaudible] >> that's not a cure. it's not treating any existing person who is sick. the most medical statement you could make is that it would prevent the birth of a child that they would allow parents who are at risk of passing on a genetic condition to avoid the birth of a child with that condition. but as pete said, we can already do that in every ways -- in other ways. almost everyone, like 99.999% have a child who is both unaffected by the condition and who is related to both members of the couple, both parents. so we don't need it for medical reasons. the conclusion that many people come to is that if the metal argument is really that tenuous then in fact what people, whether they admit it or not, people who are advocating this,
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i really want enhancements. and one to have children and future generations who are somehow improve genetically, and there we are in dangerous territory socially. >> i had a great statement earlier and i've been kind of thinking it over. i think your question was what is the role of curiosity, is this thing that you can separate and isn't this thing -- is it this thing, can you separate technology from society? one of my favorite excerpts from a book really inspired me about the idea that as a technologist, i approached the world for a long time with this idea of what's look at how technology changes society.
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and what really opened my eyes when i start thinking about the reverse, how does a society change technology? how does our drive to find cures, that social. how does that drive the science that happens. this idea of the redline, how does that drive the science? or i've seen at biocurious it's about curiosity, the lab work but also curiosity around the ethical questions around the pricing questions, around who is involved in biology, what should be the role of experts? should we lock the key and send all the submission often experts and we will just trust them to have it work? one of the experiments at biocurious is this lab we did, a dna test. it's a test for breast cancer, and however inefficient it is,
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doesn't matter. what matters is it's a $2000 patented test. and what i can tell but i wish you could experience was about it costs about 20 cents of chemicals, and it's something that would be illegal for us to sell as a product. it -- not illegal but so many good case for infringing on the patent, we were able to do as a lab. is easy to take it from this intellectual idea to be, i did not experiment and hold it a bunch of other people and we got asked the question, what's up with that? is that right? is to help things should be? people say doesn't have to be this way. you could of the people who say, involved in some ways it's good because it means the test has to go through a docto doctor so itt just people testing themselves and trying to figure out what happens. it sparks all these questions of curiosity around the science and
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curiosity around the bigger questions of science and society. and it really, i think that bracket puts it in stark perspective because it is pennies of chemicals and something you can order online. if you have the right machines that used to cost a law, tens of thousands, hundreds, millions. now it's on the could buy on ebay used and see how it works. it's a really good example because it's such stark contrast. here is this test that calls uso little and takes very little expertise, but on the other side, it's inaccessible unless you thousands of dollars. scientifically it is completely a boring experiment to your ordering some dna primers, mixing a couple chemicals together. not a big deal from a biologist standpoint. in this case the specific
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sequence of dna you're looking at has a lot of questions that are attached to it. i think that's a great example of how this curiosity and bringing other people in to the discussion is pretty powerful. i think it's potentially a really great way to enhance science, is to bring people in and be curious about science, be curious about culture and society, he curious about economics, be curious about startups, he curious about the philosophy behind whether this is right or wrong. so thank you for your question. >> pete, i hear your arguments about human genome editing but i want to chose which are sentencing this is maybe not one want to draw the line in terms of talking about ethics. because in some ways we are falling victim to pocket pcs and we think the human editing being kind of hardline that we confronted the bioethics.
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i think it's very easy for the public to look at that and form opinions on the. i kind of want to track back to some of the things tito and elliot were talking about. i will have some specific question for you but before i do that i'm going to make some point i think i see in a few. one is that easy is relative. you make this claim about our genome editing is becoming easier and easier and easier. but i think the point has to be made that, you know, we run into significant challenge is making even the smallest changes in mammalian cells. samore evolved organisms are harder to edit. that has to, because their team is more protective. bacteria has been a which is pretty much unprotected, so very, very malleable in terms of what we can change. i think there's a scale issue that is hard to grasp when
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talking about changing back to do. we kind of think back to something we can change, modify and then throw away. if something has changed our world, it has been bacteria. our whole evolutionary history has been driven by the change in bacteria. the question i have for you, elliot, is how do we engage the public on these huge, massive scale issues were something very simple becomes very complex in a global context? the question i have for you, tito, is where do we define the boundaries of safeguards to talk about the simplest things that at least currently are not pathogenic, you to draw analogy decoding, computer program is very simple. but in the right hands even the simplest tools can be developed into something that is not simple and not safe. safe bacteria can be made unsafe.
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how do we navigate these more nebulous issues that are really difficult i think for the public, the nonscientific public to think about and engage in? >> that's a wonderful question. i think what's interesting is a lot of the work that's been done by scientists to make this issue which is really complex what you're saying and super nebulous and super global, trying to make a simple by using metaphors. i think the metaphors can be helpful for public buy-in but they also have their downsides. when pete was talking about the series of editing tools and what they can do, we talk about like gene editing and revenue source you will see will make some reference to a word processor and it's like as easy as cut and paste. but it's not. so not only that but it's again want to bring it back to the point of genetic determinism reaching for that. it's not computer code. is computer code to think about it. to try to understand.
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but there so many levels of ambiguity. the fact we still refer to 90% of the genome as junk dna. it's a problem, right? we're going to be cutting and pasting it. it's really hard. you want public mind but at the same time it's an issue that is wavered in particular field of science is practiced point i tried to make which is the id we treat the public like they are stupid. you have to have expertise to talk about stem. i love that what you're saying, some people hated a biology class and didn't feel like they could be curious or make mistakes because there is a sort of expertise involved. we can't keep referring to scientists as the people we need to go out and tell the people what's up. i think what marcie is thing with this idea new ways of thinking about shaping technology, that means taking the public seriously.
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that means recognizing that we all have expertise and that it is implicit technology and science as well. you don't just get two of expertise working at burger king. you are a part of this debate into important and your voice matters. we went to the summit in d.c., and as amazing as it was to be rubbing elbows with nobel laureates, there was a but when the conversations edge more towards sociology, more towards bioethics when we saw these really famous people literally rolling their eyes at us. it was frustrating. you know, what can you do? we really have to get away from this idea that public engagement means talking and people about what science is and try to bring them into conversation, like site is about expert telling us what is safe, especially when so many of these risk are bigger than a biological risks. they are about social and political risk.
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what does this mean on a global scale? i don't have an easy answer for how to convey this to the public without this metaphor that even we get caught using which is gene editing because we're trying to make it something that people can attach to like velcro. we need to complicate that metaphor and once with people's attention, complicated again, this isn't actually editing, right? >> trying to think how to answer your question to answer your question -- yes? [inaudible] >> how do we deal with unknown unknowns of synthetic biology? maybe that's genome editing or maybe it's something much more general. >> i can tell you how we do it biocurious.
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how i personally think about it. we have a safety board that reviews each project that comes in, biosafety level one which is very simple requirements. there's nothing that is pathogenic and no human cells, nothing that can be harmful to humans and look at all the project that coming. i think looking in a different direction give me safety is around bring more people into the work and into the conversation. i think the brought the one extreme and i thought it was a great example because it's not about bring people in to the pro-science or something like that. that's jeopardy for lot of science average. science average, a lot of this, the word outreach is kind of like grabbing for people to grab them or something. i think the opportunity is really to go to where people are and talk about topics they are
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interested in. i think it was a great concert it's not about is science good or assigns something that we should leave for other people? white instead here's this experiment, has to do with test for breast cancer what you think of like let's get all the information you can wrap your head around. gmos a giant topic. that's where my concerns about safety coming. it's about what's unsafe and people are not up to speed on the stuff and people don't feel like they can have an opinion people feel like they, this is something that we should leave to other people. there's a public out there. if you're not engaged in these
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conversations, that's it. if you are, great but if you're not then like, check out biocurious or start reading stuff online and talking to other people about it. that's what's missing is you and that's how things become safer and i think a more engaging if we have you involved. i want to say thank you to avoid asking these fantastic questions. they are very thought-provoking questions. thank you. >> asked how to address the public, i'm going to come back to both of your comments. i think art is a wonderful way of doing it, the bio art, because art is can take risks. they are not ruining the reputation which is i think a concern for a lot of scientists. and i can reach a general public in a large way and in a very
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creative way. the fluorescent rabbit, that created so much discussion about some of what we're talking about here, and he never even got the rabbit. it wound up dying in a lab in france. but the point being that what is peace became about was the discussion that happened based on what he did. enters a lot of other artists that are working in that bio field that are doing i would say controversial content. so you've got the sciences, the arts is working together. i think they can reach a very broad audience of this kind of
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wanted what you all think of that because it winds up dealing with some of the very heart topics we've been talking about in a very public way, but it does start a discussion that is sometimes hard to do in other venues. >> one of the things us kind of put any slides but i did not have time for, most of the things were like the facebook the drone. there's this one person, ryan hammond, he's doing this thing called open gender codes, i'm forgetting the name right now, i'm sorry. he started in baltimore. i'm forgetting the name of that lab, too. it was in the slot. he is working at the intersection of hacking in art and also a lot of theory. what he's doing is he's trying to draw attention to a lot of
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the problems you're talking about with a brca1 district he sang what if we did not want bring clear gender to the lab but also bring the lab to people. i'm not even sure what come if he signed is going to take off or if it's even safe. but what he's doing is he's genetically modified tobacco plants so you can grow your own gender hormones. a lot of things he's engaging in, he's not like us three minute kickstarter video but he's got a 20 minute video of the clear history and all this not at its wonderful because he was taught about what he's trying to do. what i'm saying is a yes, i agree, privatize health care is crap. the amount of surveillance and control over trans bodies for hundreds of years and the forcible hormone therapies people went through this crap. i really am really engaged with hethe. at the end of the day i'm also not sure if the hormones that
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are going to expect from a tobacco plants are going to be safe or if people one of if their hormone levels are getting in dangerous zones. it raised a lot of questions that i appreciate how much work you put into it. the 20 minute video going through the history, explain why it's important is that same. i think it's also question of like okay, there's certain things we can't control and certain things the market takes out of our hands. so sometimes you create something beautiful and in the market takes it over and to become something else. what we do to make sure our best intentions, that is some kind of containment strategies that they don't kind of get away from us i think is one of the things i've been thinking about. >> doesn't really speak to your question but it sort of provokes sort, couple of thoughts. one, when i got into this, it's marcie's fault, her and her
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buddy rich gave a presentation. i was reading list at the end and i went and read it. this is absurd as modern capitalism. doing human genetic engineering is just, it's the logical extreme of the modern capitalism, as we've seen it. i went, we will point that out to people, and maybe we will finally have a revolution. well, it didn't really sort of worked out yet. you know what they mean? i think there's some truth to that and i think we have to remember that all these things are rooted in the social and financial setup that we've got, including art. there is very little art nowadays that is not trammeled
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by financial considerations. for, you know, pretty easy and solid reason. just as the evening is winding down a bit of want to make sure one other thing gets in, which is related to money and technology, which is that we don't like saying, for very good reason, is that we are spending a million bucks to get someone a heart transplant. coming out of and charged with the government or even their own pocket, you know? for that million bucks, we are talking round numbers here, you could treat 10,000 pregnant women, something, you know? you could do major health interventions for a very large number of people. and i think that's a really
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difficult problem to think about. we in this society value the individual. i'm an individual. i want to get treated if i'm ill. i was ill a couple years ago. i get treated. it cost me directly practically nothing because i had good insurance, but they cost the system quite a lot. now, i know people, i see people who, frankly, whole families would have benefited from what was spent on me. i wasn't even dying. so i'm just tossing, this is technically about the body think it does help to ground everything in the societal context. >> i think what we need to think about more in this conversation
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is helping us get all the more the we get to do in our daily lives is the context of technological choice, how it's improvedit, how it's invented, applied, such a. i wanted to reinforce this point about an expertise back from experts because i think that's really at the heart of this discussion and a crucial part of what we need to do with this particular realm of technology. there's thing things about it ts dangerous that we we need to know about those limits on their own terms, but just to point out things equally dangers like nuclear power used to be left to dyson white lab coats details it was safe and don't worry about it, you won't even need to meter it. we figured it out. we being the average citizen throughout the world learned about this by having conversations like this and working really hard, grassroots organizing. another case in point is how much medical care changed because of the rise of women organizing themselves to control their own health care over the last 50 years. these are incredibly good
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examples of society appropriate in technical knowledge from experts at defusing abroad in the population's we don't expect -- except experts as what really did it. in this case i think it's been really helpful. that said i wanted to sort of put out, the guy the left already unfortunate was putting out the cancer magic bullet as the holy grail of this technology, like there's always some version of that working up there. there's a pitch we will all live forever, we will never be sick again, or fill-in the blank. there some fantasy like that. i think all those things are sort of obviously sales pitches. and the thrill of it is that the technologies invented and control by people who plan to make huge profits from. i was interested about the factor able to duplicate this very expensive test essentially for nothing in a lab. and i wonder to what extent that brought forth a political
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conversation amongst the people in that room about how ridiculous it is that somebody is allowed to control these pads on these technologies. that's parallel with what's happened to software and digital media agenda. i think that's an exciting implication. the last thing to give you the possibility, let's push all the stuff aside for a moment. is there any reason why we should be excited about this stuff? really, what is your best case fantasy of where we're going with his? because i can't think of one that i wonder what it would be. maybe you guys have been immersed in his in various to get a whopping it as the case may be, might offer us some vision to give this -- it does have some implications that are worth pursuing. i don't know what those are. i'm not convinced that are in. if you guys have a better idea.
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>> that was a sprawl. >> the bracket experiment, like i said scientifically we can do besides in an hour. besides, if you done other extreme is using the same side which is changing the letters around and i was completely different. so does bring up the questions what it comes to the conclusion that you have which is just ridiculous system, no. comes up with different answers and people of different perspectives from it cost money to develop these tests, it was 20 years ago it was patented come all the way to is completely ridiculous and it should be open sourced and what we do to make it open-source? made we can modify it enough and then it is open-source. that's something i did with pcr. at the nobel prize-winning technology. it's in every biotech lab in the world that originally it was a patented technology and when the patents expired in 2010, a
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friend and i started building pcr machines and a grudge. the stories i got were fantastic. they were from one of the things that comes to mind is a high school teacher, she wrote me and she said, i have written all the people on kickstarter and said, like, why did you buy one of these things? have you seen the? it's a blob of wires that we just built together. why did you buy it? she said, you know, i'm just closing up my semester of high school biology and i had bought the machine on ebay because we don't have much budget and when i went to turn it on it broke because it was a used machine. so my students did not get into pcr this year. my hope is that by building this machine my students get to the experiment and students everywhere get to do this experiment. and so i think whether it's with a lab told that kicks off a discussion about patents or an
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experiment discussion about patents, that's, all my knowledge of a patents and ethics. it comes to this perspective of biotech. i'll understand of how to the democratic and how to vote comes from this one time where we were as california phone on whether gm osha label or not. i went really, really as deep as it could, i read the bills and identity thing like that before. i read almost the on and try to figure it out. and so i think back to your question about what is promising about the and its curiosity. curiosity is what publishing. whether it's about biotechnology of something else, we are culturing that curiosity whether it's about policies, whether it's about patents and whether it's about biotech so something that is completely unrelated. it allows people to get interested and then learn something. because every, every piece of the universe is connected to every other piece of the universe.
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that's a butchering of a quote. but that's completely true. you can't separate society and technology. what you can really do is embrace it. are the same thing in a lot of ways, like it's all connected together. so from my perspective, biotech and curiosity is the way, that store for me and for maybe some else it something different. it always starts with some type of curiosity. >> i struggle with this question, right, of what is the best case scenario for biotech. i think so much of is when we doing his is when we can dispense casey mears are worst-case scenarios, i think we get disconnected and we are in this vacuum and thinking like the contents will not influence it somehow. so the human genome project, right, remember in 2000, get on the stage and like guess what. we are 99.99% there.
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everyone was so excited to write? finally, right? we have all this commonality. like it's a wonderful. what immediately happened? what happened was we start mining that .01% and we called it race and w we called it class in the code sexuality and we called it everything. like comic you know? i don't know, like for me i want to harness the passion and the curiosity that i see growing in your biocurious labs i do want to turn it away from the cool stuff and away from the technology and all that stuff. i do want to put back onto the idea of social problems and maybe it's not so much about the curiosity of what we can do or what we can fix what we can make happen maybe it's about the curiosity of what happens next. but what are the consequences of our actions? so much of this world are living in right now is so high risk and it's like we are assuming that nine out of 10 startups fail and
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we don't even care because the 10% are going to be so amazing. but what about that 90% of what we are doing? like i want to be curious about that. like i want to be carries about how rapidly this neighborhood has changed in the last 10 years and like how i can go to school three years and watch gentrification happens block by block. and so maybe it's that which is focusing on the wrong things. maybe biotechnology could be really awesome but made we need to like mary get to a lot of other things first. like maybe this is the original question, like are we having this ethical or philosophical she we do this conversations at the same time as we're expended in the lab? i think that your space is lovely because it is exploring those connections like on a day-to-day sort of funded lab level. i don't think it's happening. it is going to continue, and it
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will be the elite who have those degrees who are making these tools and then at the p.r. people to sell these tools to the public. that really scares me. if we look at the human genome project as an example, like even though we can be given is a beautiful message for biotech, market forces, centuries of racism, systems of privilege will warp that beauty. so we need to really start looking at these social problems beyond technologies. we can solve so many of them with our humanity, like we don't need a techno-fix for climate change. we don't need a techno-fix the global inequality. like we can literally just to buy the things instead. [applause] >> i had to come up with, brilliant like little statement
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right now, i'll get, except when i was getting too was as a layperson and an artist also, this is like one little thought about was going to add to that thing, the concept of danger or safety within tinkering or plain or being curious with science, and that maybe just like the metaphor with a small lever you can move the world. the degree of danger has only to do with, with the extent to which science is precisely separated as elliot was saying not just ethics and sociology but also kind of a greater vision as to what our purpose really is. and one thing i wanted to add to that is, like, two things. one, an incubator space that cultivates just the cool curiosity is awesome and also harness the ball as you think of
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greater things. it is another rare thing. like my impression very much like the american culture here is very much glorification of the rugged individual discovering things going where no man has gone before and finding things. i think that's more like that is what i perceive the general culture to be, what is more rare and what i would love an incubator space for is precisely the other thing. like those question we never actually ask about okay, what will make life better? where do we actually want to go with this? and that is now being an afterthought or when after you discover anything, what are the applications thereof, but be something that is, comes before. and secondly not only that, not being something that is perceived like a hindrance or like a damper on what blanket.
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