 Alright everyone. We're about getting ready to start with our next panel. Just a few quick announcements. Not sure if everyone's heard but we are in partnership with the O'Reilly Security Publications and we are going to be putting together a book about biohacking. We will be accepting entries until January 31st 2018 and these entries will be about a chapter during length. And if you are able to put in, we are trying to put in on that hard date for a quick edit and submission for publication hopefully in time to have copies ready for next year's DEF CON. And if you are interested you can email your entry to, I'm going to spell it out because I cannot pronounce it, H-A-R-A-M as in Mary, capital N as in Nancy, 00, capital R at protonmail.ch. If you need to hear it again just find me in the back. I'll be more than happy to show you how it's written. Also we are collaborating with a few other villages this year with the Darknet Group. We are doing points for the Darknet Village where if you have an implant your friend has an implant or if he does make friends with someone today who has an implant you can scan and get points with the Darknet Village. For security purposes we're letting everyone know all it is is just identifying that it is in fact an implant. Any security or information is immediately deleted right after it's scanned. As well we are working with the IOT Village. They are doing a medical device workshop. If you are interested in tinkering around with a few medical devices definitely head down to their village and they'll be able to tell you when the workshops are set up. And finally we have some lightning talks scheduled for this evening around 7 o'clock. If you are interested in giving a quick little 10 minute talk please find one of the core members wearing a heart here and let them know that you are interested in what the title would be. Now without further ado I'd like to get the panel started for ethical implications for biohacking and here as our moderator one of our original core members with the biohacking village ladies and gentlemen Amir Ke. Hi everyone by the way Nina assures me that that email that Harry keeps giving out is absolutely not being given to us by the social engineering. That would have been a good one though. That's my real email. Yeah so that's a real email allegedly if you can believe anyone here. Really honest. So by the way I think if you've been curious and I love you come to all these talks and I know something just got out of bed to make it. The reason we're all tethered that if you're new you don't know for potential security reasons we don't really use wireless mics so it may seem very old school that we're all tethered but just in case you're wondering you're not familiar with that that's why. The other thing I would say is I've had calls with all the panel I know some of their sort of thoughts I'm much more interested actually in your thoughts so what I asked the panel and they agreed was to I know your alcohol levels may be quite high still but what we're likely to do we're going to go and introduce a very great diverse panel but while we're doing that if you could multitask which our friend Adam Gasly will tell us from UCSF you can't do I'm going to ask you the impossible which is while you get the intros just think about what you would like to have us for us to have talked about because I like to actually get you to shout that out to make sure we actually all the panel was happy to pivot and so we're interested in really addressing issues that are important to you and because we're a very informed audience we'd rather talk about things that are important to you than what we think are as important so please think about that while I go through the panel so I'm going to get the panel to introduce themselves what we have Amy first and Amber and David so let's start with you Amy can you kind of tell everyone what your background is what you're up to yeah no worries so my name is Amy Cruz my background is I have a Ph.D. and I'm currently the Chiefs Scientific Officer for the Flatless Institute so you guys made for a day to talk yesterday what applied neuroscience institute so my focus at the moment is taking all the fantastic information that's already existing in the literature in the community that we know about and actually turning it into applications that people can use thanks David set the bar pretty high for you today so I hope you're really I'm going to jump in thanks hi I'm Amber Chase I studied a field started in 1919 and it's called Cyborg Anthropology which is looking at Cyborg Anthropology I was really looking at the extension of how we exist as humans through our tools and how that changes that sort of time and how technology is effective in culture and then I started an on-conference called Cyborg Anthropology in 2008 that went to a beautiful place and we had one at Media Lab on Toronto and Seattle held one in Seattle held one in Portland, Oregon and of course one of the sessions in the 2020 was the Artified AIDS Foundation which one person had volunteered and a few people looked on terrified and some people were really excited and I talked about the implications of that I also did a few different residencies one in South Canada where I met somebody who got two Archivies installed which I thought would be a great idea to confuse any scanners two instead of one I met a number of different people who had magnets installed in their hands and tried to talk to us about that right now I spent half of my time between Portland, Oregon and Cambridge, Massachusetts enjoying some work I'm doing a fellowship at the MIT Media Lab and the Civic Media Group there's a lot of open source how we can kind of democratize what's usually shut off from us by all these kinds of enhancement technologies and then I'm also at the Urban Applying Center for AIDS and Society at Herbert Hospital where we're trying to talk about different things I'm David Sheik I'm a dog breeder I don't have a PhD or anything the amount of time you save that's incredible I'm a breeder, I want to do a better job at it so I'm a genetic engineer I built an animal genetic engineering lab for my shit and so that's what I've been doing and I kind of got involved with just analyzing it and all the crazy stuff he's doing crashed out into the rest of the biomagnet community and everybody in is like here I've been contracting out by biotech companies I've worked for them and consulting biotech companies and stuff but it's all kind of crazy so that's kind of scratched the surface what these three panel members are up to so you can see they're all very interesting it's their own way so I got you to think, hopefully I don't know if you did so I'd like to just hear from people it can shout out why are you here and what you want to discuss now yesterday many talks and today talked about mentioned the ethical implications and it seems that technology is always going to be ahead of the ethical framework so the ethical framework is going to become more and more important as these things really impact our lives so I think it's kind of an obvious kind of issue that we have does anyone have any thoughts that issues they would like to have had us discuss that they thought would impact them and they'd like us to discuss we've got one here, then we'll come to you I'm sorry, I thought I was supposed to go to the mic is the mic working? it's supposed to be, hold on it's working now, yes sorry, I thought I was supposed to go to the mic okay, good I'm Victoria Sutton I'm giving the workshop on street law for bio-hackers at the end of this village and I had a question I have lots of questions but what I'd like to ask is David Ishii, I read about your interaction and I was wondering it wasn't clear if you actually had to deal with FDA or not I'd love to hear about your experience and how they contacted you did they give you a letter the usual introductory letter or what did you have to do to deal with them and your interesting project David, if you hold on we'll cover this, so we'll get the ideas and we'll go through, I'm making notes already did you have any others you want to ask about or will that do, you're welcome to give more ideas I got a lot but I don't want to take up I'll come up later if you run out so as we get more emerging technology I'm wondering how patents and ownership go over, especially when we're talking about things like genetic elements or implantable technology that might be done to circumvent EULAs and things how it might have frameworks where we can operate and understand that Thank you, so Pat and someone else coming up please feel free such a light bar of hackers not like these other As we get a lot more powerful tools in biohacking, I'm curious to know what you think the role of the biohacking community is in terms of leading the conversation about safety especially given that regulation is likely to be slow and the tools are likely to get really powerful Thank you, great Bringing it down a bit more specifically what is your opinions on personalized or personal DNA synthesizers citing the fears of their recently synthesized horse pox and possibly other viruses gene drives, etc Keep going Amber, I hope that you can comment on the cultural influences on cybernetics that is the influences shaping why people are doing these things to their bodies and what they understand themselves to be doing in context So kind of as biohacking advances and as we get more advanced technologies just kind of wondering about whether or not you guys think that there will be an elitism or a dichotomy between those that have these advanced biohacking technologies and those that don't are addressing some of the questions that kind of come up yesterday So one more here and then we'll come to you So as we progress from kind of the theoretical ethics of what we're talking about what we shouldn't be doing and we progress towards more normative ethics of imposing rules within a community how do you see the different roles between the DEF CON type biohacking community and the other organizations that would impose regulations or norms I'm not sure DEF CON is ever going to impose anything but go ahead by the way if they do we're going to disobey right I don't give a shit people I don't think I've met anyone like that Let me just I'll go right Fantastic if your brain kicks in if you're doing some stimulation there's still time to ask us to go through things so maybe we'll start actually with stuff that's come up I know we're going to talk about other stuff too but David how about starting with you and the FDA have you had interactions with them you seem to still be alive so I came to the idea in a pretty naive way thinking that okay well I'll just I was learning the techniques of Jen and Mark and that then do what I don't need it to do good and I would just go for the regulatory process and I'd be fine and at first actually it was very nice I called them because I started Google and shit it was like a big call this number at the center of bed and medicine before you start selling so I called a number to talk to people and so a few meetings and they were actually pretty nice so before the time when I was just like okay I want to do this and make a dog a bit different and do the thing I started talking about and then I want to make a kid so hundreds of thousands of other dogs can do it they did not like that and so finally I was like hey look we use CRISPR there's no way to do it from the old regulation that the regulated article is the transitive itself so there's no transitive you don't get it there's no regulated article it's just a dog that's what it should be but they changed it so I commented hey if I make this genomic edit in a Dalmatian and cure it by Phyrocemia then there's no transitive and I sent this to the FDA I was like this is a regulation right so two weeks later they changed the regulation they never asked the regulator hey this is a regulation right so you didn't get bounty bounty money or something and so we have to talk about the process yeah just ask the regulators if they're regulating them and so so then we have like a bunch of rounds which they is clearly not focused on safety or risk because like document 287 their guidance for industry the new one on page 3 at the bottom is potentially exempt has this been seared into your brain so I can take dog's I'm part of the radiation and pregnant of a few male dogs have a litter of you puppies release them when you get them free with wolves but if I use this for the cure of disease that's a big deal the way they have it right now that dog is legally the drug the animal itself is a drug and any puppies it has aren't drugs and they have to do all like if I have a litter of 12 6 of them are genetically modified if I have a correct appointment they all have to now go through drug trials and separately each one has to get an IVD each one has to get an IVD each one has to go through complete, playable, veterinary drug through the dogs the dogs are drugs so you're hollow yes tell them how much that cost oh yeah so like just to talk to them to get an IVD 100 grand per hour dog and so that's annual so it's 100 grand a year per dog and that's just the IVD and the IVA has its own piece and all the tests and shit they want to do have their own piece and it's completely bullshit because they're not worried about the risks associated with what if you have an all-party mutation or what if this mutation that you do is something different because they specifically examine the DNA genesis you don't give shit about hybridization so it's not about risk it's about controlling who has access to the technology and what formula they have to pay for so when you called up did they have much experience with random people not from institutions calling them well no they used to like and so they told me so we had to have all kinds of meetings just to figure out who I needed to meet with you know different branches of the DNA and so you know some people were like manual some people were generic and so it was a big deal but we try to talk to them about democratization sharing all the consumers but they want me to try to own it so they can just tell me so I will say that we could spend a lot of time discussing the interactions with FDA I actually run meetings for days with FDA and you know pharma talking about the interactions so I don't want to get too derailed by that but what I would say is what that tells me is the challenges we have the regulatory bodies are not nimble or any part of government really are really nimble in keeping up the speed of technology we're regulating genetics as drugs and they're not structurally similar in how they're distributed you can't just go up to you can't just go shut the door on the factory and say ok we shut it down ok so now David's been doing other interesting stuff but I'm going to move on to other topics and we may come back to all that so the next question was there was patents and ownership and ethics of that who wants to take that on the panel first what are your thoughts in the context of genetics or in the context of what was the right so it's actually an interesting space because it's another place where people are completely unprepared from a regulatory or patent space to talk about it riffs off a little bit about what David said with FDA when I was at DARPA we had started the prosthetics program which is awesome helping wounded soldiers restore function the medical devices group in the FDA had no people or knowledge of how to regulate implantable devices for the purposes of that kind of restorative function it was just a completely new space so I think it's a question of unfortunately it's the chicken egg problem do you want to ask the question and unleash the beast or do you want to let somebody else make a run at it I think unless there is a large prosthetics program with DARPA there was an industry provider at a university provider that wanted to go after it and actually produce it and so they were concerned with getting some intellectual property protections around it but I have not seen a great deal of intellectual property protections around those implantable devices unless they're from a big and I think it's because of the cost I think it's really because of the cost of protecting the information the cost of actually going through the regulatory process I mean it was only because it was part and parcel of those programs that they were actually able to afford it the universities and the researchers would never have been able to afford that process yeah right right you know I like to tell people that you know fortunately they're not they're tracking it that closely I mean a lot of the work that's been done I'm not familiar with the amount of patents that were filed in that space but a lot of it is for government purpose rights and then the researchers themselves are allowed to go at it commercially so it may be the case that if it has a I'll call it an off-label use for lack of a better term but I don't necessarily know I'm interested in going after individuals in that way unless it was somehow disruptive to the larger organization that had gone after it I hope that's helpful so your question actually brings up some things I talked about I think with AMBA so ownership let's take ownership not patents you know most consumers who are just giving their spit to 23andMe have no idea that they're not owning that the 23andMe is monetizing that right really there's a big question about why shouldn't individuals own their own DNA why shouldn't there be a marketplace for that that's definitely a huge area that's still not get got there I think you talked a little bit to me on the phone about implants and others can you talk a little bit about your thoughts about that and ownership sure I was working for a wellness slash healthcare company they hired me out of doing this little startup that I had done so I got to go to Nashville to see a lot of course I ended up talking to people on the plane next to me constantly you know hey what do you do so I met this one guy and he said oh well I work for a pacemaker company he said oh that's great so these things last about 20 years right he said well actually all of our new models in order to increase market share and make sure that we grow as the required way as a publicly traded company must grow we now make pacemakers that last for maybe 4 or 5 years because it's very nice to get 30-40k at a time for the take out the thing it's now outdated and put the new thing in not to mention all the security issues they're running into because they're putting things like bluetooth and stuff and wifi and connect to grandpa's hotspot great this really really bothered me and it bothered him too and I said doesn't that seem unethical to you? he said yeah but I don't have a choice my choice is you don't have a job or you have a job the company has to grow as required by the artificial intelligence that owns us that is publicly traded companies that must grow so this was the big issue I said now it's a subscription model that you have to pay every 5 years for your life and it's really important for the society is to give up some rights in order to get others well how many rights do we end up giving up and if people have a lot of money from the retirement accounts a lot of money from health insurance of course they can get a new implant and I also thought about the cochlear implants and things like that and these hearing aids that now have bluetooth you can turn off your hearing or you can play music through it which is kind of nice I was kind of thinking about and as an anthropologist all I think about really is social class it's okay well I've got somebody who would normally get a 20 year pacemaker and this is fantastic or 40 years or something that's stable and now because I don't have enough money I can't go in and get the next version of pacemaker and I die and there's no controls around that in cyborg anthropology class we got to write a lot of science fiction as our assignments and of course I wrote a story called designer jeans which was all these kids in a really wealthy school their parents were constantly buying crisper-like solutions for their kids so every season you had well these are the new years for the season so immediately you would see that the person wasn't up to date with this stuff that would be $10,000 we see this now in South Korea people get plastic surgery as a birthday present and you put your picture with your resume so that people can see whether you're attractive enough or not to be hired in a job because it's this trying to pretend that it's not two generations away from an agrarian society we have to prove that we're really epic after spending some time over there it was really intense so I'm concerned about the social class issue of here's a bunch of people that can fix their own problems not only can they get they can go in and get their DNA tested which is owned by somebody else to all the new all the new systems that can improve their life and then you have a bunch of people who now have a lifespan of maybe 30 or 40 years and then you've got a bunch of people who can live for 80 or 90 years and there's this like class divide of short term disposable robot workers that are put on pause and work three jobs to barely make ends meet and then you've got people who can live for a really long time and then you have even worse the kids of these really wealthy people and then they can just fix anything they want and so when I put my data into 23andMe there was a time where you could take out a lot more of the raw data and I think you can right now and I was able to shove it into all these open source analysis tools and I was trying to find because my mom has a mess I was like well do I carry that gene am I able to I wouldn't be from the sun and I found out oh yeah I carry this horrible gene that means that I'm very susceptible to this but now I can that making what was formerly invisible visible gave me a lot of empowerment but without that and it's just being used for somebody else and I had to run it through all these weird graduate level processes in order to get that data out so I think there's this issue that you have all these people giving away their data they aren't getting any visibility on it they aren't owning any of their data and it's totally not fair but I found who is it was found that he was HIV resistant so they took all of that out and they said well now we can synthesize some drugs based on you they gave him a patient number does he get access does he own any of that no so they made just tremendous amounts of money off of him and then you have farmers who they've got these genetically engineered seeds they have to subscribe to and those seeds can sometimes pollinate with other seeds in other fields and cause those seeds to be genetically modified and then there's been these companies like Monsanto will actually sue those farmers like well we found genetically modified seeds in your field and you didn't buy the subscription model to the seeds it's like these seeds from this farmer's field infected my seeds and I was like well you still have to pay up and I was like well we can't really contain the pollination of these seeds so my biggest concern is that you're gonna have a whole class of people kind of like now that has access to healthcare and implants and things like that which is why I'm really for people doing their own implants and making a 3D printed prosthetic leg the only issue is that once you have a community like that that does it kind of underground for really cheap you have to have a support network that says okay well I put something in my hand and I have a microtumor I have an infection I need to get it out is there an underground department that I can go to that I can get this taken out in a safe way that I don't have to go to the hospital and have them either sue me because I have some government the property in me or that's not gonna alert any authorities that's gonna be able to do that surgery for me at a cheap level you know kind of off-grid do we have to go to other countries for that do we have to go to some back alley for that we're gonna have to see that whole underground market that does this on the cheap and then all sorts of ways of deflecting any authorities detection of these systems because right now it's not enough of a profit loss for these large companies to go after people but at some point if it's a if it's a gene mutation or some nice thing that prevents you from having a disease and you got it off market then hey they lost a hundred thousand dollars I can't imagine now you you'll have celebrities will say well I'll buy one of those designer dogs that sounds great you know I can get one of these dogs without diabetes fantastic you know but it'll be really cost-prohibitive and there's money for that and it comes from these tiny little places and that's that's my big concern that there's no overarching authority that says hey this is an ethical we're gonna create an even larger class divide and a whole subclass of people that do the soft grid that we can just raid you know imagine getting getting raided as a as an off-the-grid medical facility and like all the different ways that you're gonna have to hide what you're doing and that sucks and unfortunately it goes into science fiction but now that's today unfortunately so these are the things I'm concerned about there needs to be democratization of this stuff because look at what we did with like yeah we had GMO food but now we can feed more people okay right or that the whole point of let's say a democracy or like having some rights is that you have access to to these things like you have access to the new technologies we don't have things anymore really like a bell labs or like the idea of electrical grids that everybody gets electricity and we yeah we can subscribe to it but it's pretty affordable we need to have that same thing going on for this new generation of medical implants and devices and genetic processes or we're gonna get really big trouble with our future selves and it will suck horribly and right now it's just too goddamn profitable for people right now so they're hoarding all the money and consolidating all the capital and I just think that the how that works in the past isn't very good and you know democracy makes things a little bit more stable over time so we're just kind of shooting ourselves in the foot it's hard to tell people that who are CEOs who make a lot of money because they have to respond to their shareholders and they have to grow so your question really opened the giant kind of words right so any touched on a few topics that we've been thinking about so that's great thank you I'll combine two of them I'll combine next the safety implications right and the don't give a shit people kind of a question so how do we deal with the biohacking community and that sort of ensuring safety and how do we impose rules like someone said to folks who don't give a shit about rules right so I've been thinking about this a little bit because you know as someone who's who's transited the space from both of what I would call an over-regulated environment which was you know working in defense and trying to get through institutional review boards and things like that to work in what I considered mission critical slash life-saving applications and the struggle there all the way to advising my friends and colleagues on the best placement of TDCS electrodes for you know the kind of stuff they're trying to do right so I absolutely believe in the democratization of this space and so I was wondering I was playing with the idea of you know with the you know there's obviously even the word IRB institutional view board you know gives me hives right because of you know sort of dealt with that but I was wondering is there could there be an equivalent in the biohacking community of some type of peer reviewed you know review board where it was not binding in any way but you got the input of folks who may be actually specialists or willing to transit that space and I think one of the challenges has been and I'm going to criticize my own group of people right so I'm going to criticize researchers in general maybe people who consider themselves professional researchers I think they've been hesitant to cross the threshold of interacting with you know sort of do it yourself for biohackers for fear of I don't know their own research credentials or you know nobody's going to take away my PhD if I help my friends like put their electrodes somewhere you know I give them the same caveat that I'd give anybody else that I you know whether I'm recommending you like eat something or you know put an electrode on your head I think it's a you know it's a conversation that we're having I have a colleague Zoran Popovic who's done the work on fold it it was that like crowdsourced protein folding thing and he was the one who insisted to Science Magazine that all of the researchers who had participated in that activity get their name on the paper and I think we need more researchers you know I don't necessarily think that it's entirely incumbent on the biohacking or DIY community to figure that out I think it's also incumbent on researchers and medical folks to cross over and start interacting in a better way so is there a way to do peer review is there a way for researchers and scientists to share methodologies that don't necessarily impose anything on the folks who are doing that but but want to get into that space so a couple of comments on that first of all would you guys are going don't give a shit people would you ever think of submitting to an institute review I would assume not when I used to give this to my wife's highly off record she used to do this about placement we just wanted to know if this is going to kill and he was like I'm not answering I just wanted to know if this is going to kill that's it this is going to kill my friend he's like I can't comment so it's not that you wouldn't talk to them they don't talk to us it makes us feel really sad but let me just from a different perspective because there are those academics who will say I personally don't want to participate and they have the right to not participate however there are committees at the universities who will look at an academic and say did you participate in this you submitted this when you asked for a motion or for tenure and now we have a problem with you and so they're not they're never going to make clarification somebody says hey can I do this are you guys going to throw this back on my face can you tell us more about what we're going to throw on your face it's all about liability because if I said oh yeah you can implant this right here and it won't kill you and then it kills somebody because they had some other issue in their system that was unique to their genetics and they die you personally are on the line because you said that to them so what are these people I think if we if we kind of there's kind of a framing that I like to look at where you have the norm line right here's the norm line of everybody has cell phones in their pockets of video cameras and this is no big deal but 15 years ago we didn't and anything above that was considered an enhancing technology oh my gosh you have a camera phone that's insane that's not evenly distributed this is horrifying oh my gosh our privacy is dead and then a few years later it's not really a big deal because everybody's got it right so anything above that you know military technology enhancing and then you have below that that gets you back to the current norm you have this restorative technology eyeglasses medical devices things like that and so what I'd like and then you have this other vector over here which is art and art you could say well this is art so you don't you can't regulate it right so so it's about reframing it so that they don't have a legal liability it's oh well I'm gonna put an ear on my hand well okay I'm allowed to do that because I'm an artist right so there so I'm also interested in these like little tiny legal gaps that you can exploit to make your things art or something that you can experiment with and publish right so so let's let's see like whether that's reasonable or not like I think in some cases if you if you write about it you kind of do like the legal thing as an art as well there might be gaps you can get through but again you could things could change and you could get totally destroyed right so it's just this is inherent thing but the question I have is do people have a right to restorative technology if we think about vaccinations and penicillin and all these things that are about a public health crisis and suddenly everybody needs this thing because there's some CRISPR thing that takes out something horrible that could spread to other people then wouldn't that be a reason to have these things democratized so it's twenty bucks and you go get it at the CVS pharmacy as a shot and everybody has to have it versus you pay a hundred thousand dollars as a small individual with a trust fund that can happen nobody else can have it and I wonder if if we come upon things that are good enough or like as crucial public health that we that suddenly there's an incentive for everybody to have it it still will make people money we'll still make insurance companies money this is being very utopian but I'm wondering if that's a possibility so like in terms of like the people who don't follow the rules necessarily like I think they're absolutely necessary to the health of the system in general so looking at it from a broader systemic perspective any system of control has to have a little chaos at the edges because if it doesn't then there's there's no resistance to people who would game the system so you know like right now like half the reason our fucking financial systems fucked up is because people are gaming the system and so you need people who can innovate faster than they can game the system you need people who can introduce unexpected elements so that the system can change any system that's total order is is just right for manipulation and there's no opportunity for the system to adapt and so when when you have people who are like I don't give a fuck I'm putting this thing in my arm then you know you have opportunities for new ideas to spread you have opportunities for the regulatory bodies to look at new things happening and say well fuck we never expected anybody to do that you have opportunities for the system to adapt in ways that make it resistant to people who would capitalize on the system from below and from above so like bioterrorists you know fucking like tyrannical governments that would use this shit on their population you know fucking greedy industrialists who would use this stuff to their advantage and so when you've always got a little bit of unknown at the edges and you've got people who are willing to to hack the gaming that they're doing then you can create a path out of them capitalizing and getting total control of the system I know there's a comment to question over here I was just going to comment that when talking about peer review and something similar to an IRB board in terms of bio packing community that already exists because it's part of the open science community there is peer review people periodically come on the bio packing boards and say I want to do this and they immediately get feedback from people who have either tried it or have some sort of specialization and get the feedback on no that's not as good as what we're doing and completely out of the filter too you're shit stupid there's also a little bit of time to get journal bio packing which I think was just too early in moving it to our other software not important to me I mean that's a we see those things circle through and that would be a really interesting place because that does sort of enforce and I'm using the word enforce in the light as possible way in terms of just a rigor you know from that perspective without necessarily imposing any controls on the overall hypothesis of the folks that things are going after the other thing I was going to say about regulation in general was just you know you sort of came up with the example of the CRISPR you know we find some solution and it's in the CVS the interesting thing I think about the disruption in the space is just speed you know I mean look at how long it takes even something that's desperately needed to get through a regulatory process and get through trials I mean I just I just want to blow that whole thing up so I just want to come back to see your comment first actually I think to me I edit journals we were having dinner last night one of our many conversations was about how broken peer review is fake journals and also conflict of interest in peer review so actually I think crowdsourced kind of feedback in many ways is stronger and better than traditional peer review do you think I like to point out many people don't know this but unlike most other countries in the world at the moment the largest institutional review boards in the US that actually have contracts with most academic centers are owned by private equity and they're actually monetizing the data that comes into the institutional review boards so even while I think I was institutional review boards private equity owned and very much for profit and most people even in the industry don't really understand that I was definitely not advising for for commercial but the thing is the people don't even realize in the US even those ROVs which are thought of as you know they're absolutely independent it does not stand for independence on that line and not in defense of the IRB at all how though can we as a community enforce the intent of an institutional review review board of protection of participants and informed consent I mean I think so you're using the word enforce is interesting to me that now that's in that super light way so when you're in a sort of scientist by hacking paradigm I'm just not sure the genie's out of the box I'm not sure how you can enforce a like you would with employees in a company or something yeah at what point do you take it in terms of making sure that the information is available right from a standpoint of your friend most of this is going to kill you're really aiming for is well it should or shouldn't I don't know what else is underline right here's all the info that's out there that you can take a look at and kind of gauge your own risks yeah there's a reason why I like coming in with my optimal stuff then just sharing hey here's some stuff that you guys can look at how to go through the process but here's the starting point isn't that kind of the ethos we're going for here here's the information right and and the best and the best information too right it's sometimes I'm not sort of arguing for or against you know a credentialed person having more knowledge or more information but sometimes there is experience in the field that helps you pull together things that are across studies or across spaces to impact and I'm one of the people where you know when my friend asks me where to put their electrodes I'm like I'm giving you the papers and the whole raft of stuff and I'm telling you how I derive that that thought process and you tell me if it works or it doesn't work for you right exactly right right right right but that seems like a good version of some type of informed consent in a I mean obviously there's also the relationship between the person if there is someone doing the procedure and someone receiving the procedure that also you know I think is maybe a little bit higher level of informed consent than right exactly yeah yeah absolutely absolutely right right right well it actually made me think of that because my dad has an implanted defibrillator and I realized you know we don't have access to any of that data he doesn't he doesn't actually own that implant right it's it's like a little resident in his body that's essentially owned by Medtronic you know you know that you know I'm a neuroscientist I can actually do something with that data if I had it I could check it more frequently I could do all kinds of things and right yeah yeah I keep thinking about I had an employee once that had an insulin pump and he was really excited about it and then he got it done okay great and so we had a one on one meeting and he beeped and I said huh I can hear the implant he said yeah it needs to be like refilled said so it beeps can you change the alert style and he said nope and so this whole thing that he was so excited about restoring to the norm and nobody noticing that he was just a cyborg it would go off during weddings and funerals draw attention to him and make it seem like he was being rude but then when he was at a really loud concert he couldn't hear it and that was a health risk to himself and he couldn't go to the company and say hey why don't I have control over even the alert style because it was done and he didn't even get to see all of the features of it before it got implanted because he was so excited about it and this was like the state of the art and so I actually wrote a book called calm technology able to change alert styles and you're going to have a different situation you're not in an assisted care home where the person who's taking care of you needs to hear that so they can refill the insulin pump you're your own independent individual and you need to change the alert style and not even having control over that is so odd because now we'll have a series of future in which all of us have different cyborg attachments and one is owned by this company and one is owned by that company and one is owned by this company and that support between the two so you could get some nice data out oh but sorry we closed down the API because it wasn't making any money and that that was my concern with like you know web 2.0 right now is that there were a lot of companies that you know especially in like the quantified self community which is oh you can have access to your data or you can buy back yourself in a way right we're buying back ourselves and subscribing to ourselves and that you know if you were in the Olympics maybe you could have this kind of small mini utopia of for a while being able to access all the data remix it and people could make their own third party systems for analysis of that data which was rendering the formerly invisible visible and that was fantastic but we might not see until like the next generation of the web how actually useful for all these companies it is to allow that data because a hardware developer isn't necessarily always the best at software as you can see with all these like home devices it's like oh wow this is a phillips hue light but I can't really use the app because it's awful and it doesn't really work so allowing third parties especially also with like government data and things like that to make the best interface for their purpose and make money off of that turns it into an ecosystem model that benefits both people because if I bought one of those Nike wristband things as somebody who advised the Nike accelerator and they've never finished their API and nobody could do anything about this because it would be more useful to them and no company can actually say oh I know all the different use cases for this technology it's up to the customer to do that and having this symbiotic relationship between the two would be useful for both parties and it's really upsetting to see how terrified people with legal and these like old school industrial methods that they just say oh we need to close all of this off and we're fearful and then they wonder why nobody's buying their devices anymore and I think where we realize there's an incentive for things to be connected to at least the customer for that to happen but we probably won't see this in this generation of the web we have to have like kind of the tide going out and coming back in and that's what really threw me into a depressive loop when all this stuff started shutting down because we go through periods of the web and data that are very open and exploratory and fun and people are remixing things and wow these cool things and then you know and it just feels awful so like well now it's all beige and corporate again and we lose all the opportunity and the art and you brought up Steve Kurtz which is a really interesting case I might not get the case right but there's this guy Steve Kurtz and he was doing a bunch of art and he had this guy named Professor Farrell who was getting some non interactive bio material for use in these art exhibits and he was very open about the fact that he was experimenting and then his wife got sick or died or something he called the bio material in your house and so they made this big case out of it and they said you might have killed your wife or something like that and they went through his house with hazmat suits and tried to figure it out and they tried to indict the professor for giving him this non interactive bio material and it was like well none of this was an issue but it was this big landmark case that this person doing art and so when we talk about is it okay for me, is it going to harm me, that's one level, but the next level is is it going to harm somebody in my household and if you make a system and sell it to somebody else to interact with some cancer that they have in their system and triggers it and there's a correlation tied by some police officer like regulatory institution that has nothing to do with what you did then are you on the line for all of these other people and so that was a scary case that came out where they tried to get him in trouble for something that he actually didn't do but out of this out of the sphere-based thing. So we have to wrap up I'm fortunate but I'm really glad that we were easily able to solve this simple problem in our one hour panel so what I would say is I would propose to Nina that we continue actually talking about ethics probably every year because this is an evolving area and obviously we feel very passionate about it and the level of engagement we got from the audience thank you for doing the job for us really appreciate that and we'll definitely if you like it because this is an area we need to think about every year and try and maybe show some leadership even to more traditional groups so thank you everyone I appreciate it