Welcome to all of you. I'm happy that you can join us in the webinar. So, as you all know, this MOOC was developed in response to the television series, Mind of the Universe of the VPRO. So, we took one of the sessions as our inspiration and specifically, the Personal Genome Project by George Church, where we looked into the issue of the genetic privacy. This is how we set up the MOOC. First, in the first week, we introduced the issue and we told a bit about genetics itself, what is a human genome, to give you some kind of context around this scientific development of data banking. Consequently, throughout the weeks, we opened more and more of the ethical considerations that revolve around this issue of genetic privacy and data banking. So, first, we discussed the more conventional ethical debates that revolve around it. But then later on, we introduced, for instance the topic of art and culture to open up more of the emotional considerations or more of the opposing actions that you could do to surpass these problems that genetic information provide. Then we also took into the diverse considerations and concerns of stakeholders, patients, CEOs. Well, you have yet met them all. We did that for you to not so much as to just gain factual knowledge about the issue of genetics and genetic privacy, but more to develop your own critical stance and your critical opinion about what to do with this new biotechnological development. So, as a result, you wrote down these policies, recommendations to see whether you were able to pinpoint the exact proofs of the matter, and actually a lot of you did write very nice policy recommendations with, well, actually very diverse ways of dealing with the issue of genetic privacy and data banking. Some of you thought more of authoritarian position was of importance. Others prefers personalized power, and others thought that the commercial institutions would still be empowered to decide what kind of information should be shared and in which way. I don't know if both of you have something to add to this recap. But I think that David Koepsell has more to say about the policy recommendations, I understood. Well, maybe first, David Koepsell you can introduce yourself to all the learners that are watching. All right. Well, thank you very much and thank you for the invitation to speak in this MOOC. I'm now going to be on two Dutch MOOCS. You can watch my course on scientific integrity and ethics Delft MOOC, which is eternally going to be presenting that course there. But I used to actually live in Holland. I was Associate Professor of Ethics at the Delft University of Technology. So, it's very nice to reconnect with my Dutch colleagues, and I think I first met you when I spoke at one of your courses in the past about genetics and patents. So, thank you for inviting me back. A little bit about me and my research, and then I'll talk about the policy recommendations. I've been involved in philosophy and law. I have a law degree and I have a PhD from the University of Buffalo and I've been teaching and writing about science and ethics and technology for about 20 years now. My introduction to genetics comes through my wife. Dr. Vanessa Gonzales is a researcher here in Mexico, where I now live. She is at the National Institute for Genomics in Mexico, and that's called INMEGEN, if you want to look it up. She and I had been collaborating on issues of ethics and genomics for about 15 years since I met her. So, I wasn't initially that knowledgeable about genetics but I've gleaned a fair amount of the scientific knowledge and become melded into my own philosophical and legal research along the way. The first foray into genetics I made was when I did a postdoc at Yale in 2006. That was focused on the issue of patenting genes. So, it was not a widely known practice but it was a widely practiced practice that patents were being given to genetic material and this is something I found ontologically and ethically interesting at the time. As I was learning about genetics and it was shortly after the completion of the Human Genome Project, I became curious about this practice of getting patents on genes and it seemed to me a little strange. I started delving into it from a scientific standpoint and from an ethical standpoint. I learned that there was an unusual situation where unmodified genetic code was being patented. Now, what did that mean and why did it matter and how did it relate to you and your genes was what I wrote my book, 'Who Owns You, about during the postdoc at Yale that was published in 2009. In the book, I argued and I think this was the topic of my last class with you guys. I argued that patenting genes was just ontologically wrong and it was also ethically wrong. The reason I found it strange and ontologically wrong was because genes didn't fit the standard notion of property. This will come back to the issue of privacy as well, because genetic information is not something you can bottle up and contain and resell as though it's yours. Genetic information, especially natural genetic information, because now people are capable of editing the genome, but let's talk about natural genetic information. First of all, it's not inventive. So, I argued it wasn't amenable to patents. It's also something that belongs in the public domain because information itself and that's what genetic information is. It's information that has been created by nature, and that we're learning a great deal about, cannot be contained. They can't be wrapped up tightly and prevented from further research and that's actually more or less what was the threat of patenting genes. Just before I get into the notion of privacy to set the landscape, a company that ended up being the subject of a lawsuit, that company was Myriad, had a patent on the BRCA1 and 2 mutations that are responsible for an increase and likelihood of getting breast and ovarian cancers. So, what do that mean? Practically, I meant that they could monopolize the market for the testing for that gene. That that was a significant problem, just practically speaking, because women and men who also can get the cancers, who had those genes were not able to choose who to have tests for the presence of those mutations. The monopoly that that company Myriad had, meant that they could set a price, that price was 3,000 for a test and that was largely being underwritten in the United States by insurance companies. Nobody could compete. The way a patent works is, nobody else could reproduce the genes, and at the time, in order to test for the presence of the genes, you had to do a test that ended up reproducing new genes and nobody else could do that test. Now, many were limited in the information you can know about yourself. If you wanted to go ahead and try to corroborate, for instance, a test that you'd gotten done by Myriad, you couldn't. There was no option for doing that. As it turns out, right after when my book came out, the ACLU, the American Civil Liberties Union, sued. Of bird the patents that were being held in chains. In the American Civil Liberties Union usually defends questions of free speech and other basic bill of rights issues in the United States. So, why were they dealing with an issue about patenting genes? Well, one reason is that it was a bottling up of knowledge. It was a monopolization knowledge and it had clear implications for certain fundamental freedoms. In this case that the freedom to be able to find information about yourself, and they won. So, that was a surprise in 2013 month. Much to everybody's surprise, the United States Supreme Court unanimously overturned gene patents, and shortly thereafter, the Australian Supreme Court did the same thing. So, now really nobody can monopolize that information and that left us with an interesting situation. So, in after 2013, after the so-called Myriad Decision, the question became, who is going to be able to control genetic information? What is your relationship to your own genetic information, and a corollary of that is, how are you going to be able to protect that genetic information because as it turns out, a lot of people have some very legitimate concerns about how that information can be used. What it means not only for their own health, but for things like employment or their civil liberties etc. That data has a fair amount of significance. Without having a clear legal regime that says, you own this data and nobody else can, there's really sort of, lacuna in the law about how we're going to deal with it and what that means for genetic privacy. So, since 2013, I've been working on this issue of genetic privacy. My wife, Dr. [inaudible] and I have published a couple of papers on the topic, one of which I believe was distributed to the course that's a chapter from a book we were invited to write. We were faced with the question of what to do in terms of now what, I mean, I had written this book about gene patents and fortuitous play and there was a significant legal case that ended the process of patenting genes. I didn't want to take the chance that somebody was going to again follow up with our studies, and research and maybe develop some policy and so this time around, we developed a company, and a product that is supposed to be able to accomplish what we think is important in the realm of genetic privacy and scientific research. So, before I talk about the policy recommendations, let me tell you my stance on it, and then afterwards, after the discussion with the policy recommendations, I'm happy to field questions and we can have a bit of a debate. Yeah. So, the questions about this so far, I've been monologing, so I don't want to monopolize the time, if there's any questions please I'm not sure how they raise their hands in this. But we will answer a selection of questions at the end of the webinar. So, someone is helping us with selection of to questions and at the end, we'll come to those. Yeah to Decca. I'll maybe, it's good to say also that so we have selected three policy recommendations out of well, a lot of well submitted policies and we very much enjoyed reading the policies crisis I think. So, yeah and now, we'll we've all read them and the [inaudible] also read them. So, well David, the floor is yours you can discuss them if you like. Yeah. Well, before I get into them, I want to set the landscape a little bit about what my concerns and what researchers concerns are about genetic privacy and then, so I say from 20 after to 35 after. I'll discuss the policy recommedations. So, I'm going to try to be very [inaudible] about the tightness. Thank you. I'm very happy to keep. The twin concerns with genetic data privacy are that, your genetic data isn't used in ways that violate your expectations of privacy, but also there is a significant amount of science that can be conducted if we got a lot more genetic data. So, right now what's happening in the world is this, there's a major source of new data flowing into science. As I'm sure you're aware, a lot of that is direct to consumer testing. So, as of now, about 7 million people worldwide have both genetic testing. The biggest player and these are direct to consumer tests. This is not just medical testing which is a different type of testing. Should I explain the difference for your students? Yeah. Okay. So, direct to consumer testing right now relies on a technology called micro-array testing. This is looks for snips, single nucleotide polymorphisms. It's what we call genotyping, it's not sequencing. So, when you get a direct to consumer tests, what you're getting is a profile of all the, well not all of them, but about 600,000 important and well-known snips, single nucleotide polymorphisms that tell us something about yourself. I'm sure your students know a bit about genetics. Most of us share most of our DNA. All of us share most of our DNA. There's only a very small amount of variation among us, but it's that variation that obviously makes for interesting science and interesting study of disease and traits. So, because we don't really need a full genomic sequence for most purposes, and because we can learn a fair amount through this much cheaper form of protesting, through microwaves largely created by Illumina, which is a billion dollar company out in California. We can get a pretty interesting snapshot of our genotype through this testing. So, direct to consumer testing has been focused on providing some interesting and basic knowledge about our parent or teacher for instance that's a big interest of people getting the testing and a profile of our health as well to some degree. There's a lot we don't know. This is one of the challenges and one of the reasons why these direct to consumer testing companies exist. So, 23andMe just put it in content, they just finished a $400 million mezzanine round of finance. Is 23andMe making money? Anybody know, you guys know? [inaudible] guess. [inaudible] think so. [inaudible] they're losing money on every test they sell. So, as I said, there's about seven million people have done these direct to consumer tests, five million of them through 23andMe, and everytime 23andMe does one of them, they lose money. So, where do they expect to make up that loss and why did the investors put $400 million into 23andMe? By reselling the data. As it turns out, 80 percent of these people who are doing the direct i.e by the full disclosure, I did a 23andMe test, I haven't agreed to share my data with them. That means they can't resell my data, but 80 percent of the people who are doing those tests have agreed to share their data because they are sending me an email every week. They say, would you like to share your data for science, I politely refuse to answer. So, at this point I haven't, but 80 percent of those 45 million people have and that data is being resold and by 23andMe own account. Each person has done one of those tests has had the data used in 200 studies. You can find this on their 23andMe website. So, about four million people out there willingly sharing their data for science and we don't know who's using them, what, that science is, pharmaceutical companies largely, but there are researchers, and others and labs are able to buy too through 23andMe. So, this is a big deal. This is a lot of money at stake and the science that they're going to be able to deal with as data is extremely important. So, the more data we get, the more we can correlate it with your individual phenotype, the more we expect to learn. Okay, and this is going to be the next 10 years. It's a big kind of- this is the next Gold Rush, and the patenting of genes with the gathering of the inflammation correlating it with phenotypic data and building new models of disease. It all sounds really wonderful except, there are some reasons for concern that we can talk about shortly. So, that's the background and that's where we stand now. The question is, what are we going to do to protect people's privacy? Because when a company like 23andMe asks you if you want to share your data with science, they're going to ask you a lot of personal questions because the only way that data is going to be useful is if it's correlated with your phenotype. So, let's look at the proposals that we've gotten. First of all thank you very much for sharing. It's [inaudible]. Can you tell me a little bit about these students, these are back bachelors or [inaudible]?. Yeah. These are learners come from well, anywhere in the world from well, Mexico even where you are right now. [inaudible] Yeah. They also have different ages, or different backgrounds. So, yes sorry general. It's a mixed group of people. Okay. Yeah they've got some interesting ideas. So, let me discuss them. It's okay to talk about them by name. Yeah it is. They gave us consent. Yeah. Good. Ms. [inaudible] In Mexico we say [inaudible]. But in Spain, it's a different pronunciation, so forgive me. Her recommendation, I thought was very interesting, and it aligns nicely with my own thinking because it relies very much on the private sphere. So, as I mentioned last time, the Supreme Court took up the issue of gene patenting. I'm not sure that laws and policies from judges are going to necessarily fix the issue, and as I mentioned right now, our own approach is a free-market approach. So, I like this proposal. I'll talk about the two parts of it and where I think it's useful and what might be missing. Castiro Arosco suggests that people be better educated about genomics, that individual genetic counselors, they should be involved in explaining what the data means, and I think that's extremely important. There's a great disconnect between people's knowledge of genetics and what it means in genomics and what science knows. So, the first point is that science really doesn't know enough. So, when you get these reports back from, say a direct-to-consumer testing company, it tells you a lot of interesting statistical stuff, but that statistical stuff is not destiny. People read it in many ways as destiny, and that's a real problem. So, if your tests as you know, I was surprised on how healthy I was, except I have a bit of risk of heart attack. That's what 23 and me told me and I started to panic right? So, like, "Oh no, I gotta bring that percentage down." Well, I can't bring it down because that's a correlation based on the statistics they have and the data they have. But, there's also a great amount of flexibility and statistics too. I may never have a heart attack, or may have one right now. There's no way that genetics are going to tell me that. These statistics, and this is a problem with public knowledge in general. Statistics are not destiny and there are outliers and understanding statistical probabilities as a real problem in general, which makes it difficult to communicate scientific and other issues with the public. So, I really like this idea that genetic counselors being involved, and we need a great many more genetic counselors. There aren't a lot of them. I don't know how it is in Holland these days, but in the US, it's a growing field. In Mexico, it's a very small field, but it's going to be growing as well. These experts understand these statistics, and they can help to explain to people what they mean, and how the results of the test might be helpful for you and for your health, and I think that's an excellent recommendation. The other thing was interesting. So, this is more of a public educational approach. I like this as well. So, the companies like 23andMe were making a great deal of money off the prospect of being able to sell the data. I think due owe it to their consumers to educate them more in genomics and genetics, what that data means. So, I really like this approach, I think that you know it's a sort of libertarian approach. You rely on the free market to address the concerns to make sure that consumers are educated when they're buying your product. I think also would be, I mean, I'm generally in favor of increasing public knowledge about science. So, I think these two approaches are both consistent with that. I think I like them very much. Are there any questions or any parts that you want me to address further about that policy proposal before I move on to Mr. Cooper? Well, I was interested what you would say about that each private companies shoots attempt to cultural resources and cinematic refee for their message. Yeah, so there's a danger there. That is, that they will use it for propaganda, right? I was thinking more in terms of public education, so now we have a fair amount of public educational resources, and a lot of TV shows and other more accessible channels. But, there's also the danger of propaganda, and people have to be able to sort that out. So, yeah, that's my only concern. I think in general, beginning with elementary school education, we should be teaching on a great deal more about the science of genetics. My daughter is fortunate because her mother is a scientist and she has a lot of questions about genes and DNA. She's learning all about it, so that it's going to be harder for her to be propagandized for sure. She's going to be a now eligible consumer for direct consumer tests, which she already did, and now she enjoyed looking at those results, as a family. So, I think we've got to improve that educational component, I think it's good to have the companies that are selling the products. Use some of their profits to do so, but I think there's also a public duty to do so as well. So, public education. In education, that is kind of one way communication from the sciences to the public without giving the chance to the public to kind of empower themselves, which is kind of information. Yeah, so I think that's absolutely what we want to do. We want to empower them. That information is going to be very valuable for their health too. So, your genetic data can be used for your medical care. This is a very important development, and one of the first practical ways in which genetic data can actually save lives. But, most people don't realize that, and even doctors are not necessarily taking that into consideration when they treat you. So, we need to be able to empower people starting at an early age with the understanding of the field. Anything else before I move on to Mr. Cooper? No. No. All right. Yeah, Mr. Cooper had a little more, I guess, somebody said there was a spectrum from libertarian to authoritarian. This is a little more on the authoritarian side, I thought. So, yeah, there's a misperception in here, first of all, that I wanted to address. The notion of privacy relating to your genomic data is not because your genetic data tells us who everything about you, okay. That is not the case. It doesn't reveal, for instance, if you're psychopathic or something like that, we don't know that yet. There's no necessary genetic correlations between most diseases, again, they're statistical and the complicated diseases like mental illness, we have very little knowledge about. So, the notion of genetic determinism should not be the reason for seeking genetic privacy. That said, I think Mr. Cooper's idea of making sure that only a sort of, let's say a certified type of data consumer has access to the data, is an interesting idea. So, but it has some pitfalls as Mr. Cooper acknowledges. I'm assuming it's Mr. Don Cooper. So, this data is already out there. There's a number of public genetic databases where you can search for and find data to analyze. Bottling it up, the way that, this proposal suggests, I think is problematic. First of all, as we know and we try to have international organizations control the flow of information, there's always going to be thugs and renegades. So, that's true of nuclear technology for instance. Not every country has signed on to the Non-Proliferation Treaty, for instance. That's true for chemical and other weapons as well. Scientific knowledge, is I think particularly difficult and dangerous to try to bottle up like that and to limit the flow. The idea of making sure that only certified people have access to buy the information, to use the information is compelling because at least then we know who they are. Although, in our case, we made a product, a software product and we actually do something like that. For encryptions product we require data buyers to do KYC, Know Your Customer. So, we can later know who's bought the data and then, you know, if it's misused we can track it. But that's a private approach, it's not a public approach. If there are data buyers who don't want to go through that process, they can choose a different company that's not gonna do that. But in the case of a international governing policy, I think that's going to be really difficult to contain. Then the rogue states are going to become the big free markets for the data, and that's a real concern as well and what's going to prevent them if these transactions can be done online. What's going to prevent them from hosting tour sites or whatever and disseminating that data themselves. I would rather not push it into black markets like that. I would rather see a cooperation between the private and public sphere to make sure that people's rights are properly protected and that people are properly informed. Yeah, that's my comments for that recommendation. Do you have any, I don't mean to be down on it and I understand the impetus and I think it's a good impetus, but I don't think it's manageable and I'm concerned about stifling the flow of scientific data. Yeah. Any questions or comments on that before I move on to Mr. Carroll. No. I agree with you that these kind of international arrangements will not be possible because there will always be kind of states that will allow more different possibilities than regulated in international regulations. So, I agree with you that this genetic literacy is much more of importance perhaps than all these kinds of international regulations. Yeah, I think it's more practical and I think it's something that we can start with immediately. We can educate people about genomics. I think we should as consumers, demand more transparency about the flow of our data by the companies that are selling. Yeah. So for instance, you know, there are legal approaches that I think would be helpful there. Anybody who's selling a direct to consumer tests, I think it would be reasonable they ought to not only tell people statistically that your data has been used in 200 studies, but let you know exactly what studies they're used in. Yeah. I think that would not be terribly burdensome. Our system is going to allow me to do that because actually blockchains allow me to track every transaction. You could use something like a blockchain to track every flow of information from, you know, from a company like 23andMe to a buyer of that data, and have a permanent record of its use and I think that inevitably would then be educating people about genomics in general, but about how their personal information is being used. Then they can, if they see for instance. That's my dog, sorry. If they see for instance that. That's a Dutch dog. [inaudible] Wow. So, if people are able to see how their data's used, not only will they see, you know, its value, but they can maybe make choices about it in the future. You can opt out with a direct to consumer tests at any point of using that data for science, and if say, if you see that a pharmaceutical company you don't like keeps buying the data from you, maybe you want to revoke that opportunity. Yeah, that's also what Mr. Cooper said, that each person must have the right to regress rigid limits so indeed to give power back to do the active in ignore the openness of your information. Yeah, I agree with that. I think that's absolutely true and I think Mr. Carroll also has something along those lines as well. Yeah. Yeah. Shall I talk about, I'm over time for the policy. Yeah, it's all right. So, let's finish with Mr. Carroll's. So, this is treading in between the two others. Yeah, I should mention that the concerns about discrimination and stigmatization are real. So, one of the things that's happened in the US, for instance, is a law called GINA. That law prevents your genetic data being used in employment decisions or insurance decisions. So, these are important provisions and that's a federal law in the US. So, that if say you have the BRCA1 and 2 mutations, your health insurer is not allowed to jack up your insurance premium based upon that information. Now mind you, when insurance companies in the US onboard you, you do a health profile in which they make decisions about your premium. But in a self-reported health profile, they can't use the genetic test to validate that profile. Do you understand? Yeah. Or invalidate it. So, that's really important. So you can't be stigmatized, you can't be discriminated against, legally, in the US, based on that law and I think that's really important. I think other states should have similar laws because stigmatization and discrimination is real and basing it on genetic data is I think dangerous, because as we said before, even genetic data is not destiny and, you know, you might have statistical correlations but no certainty about your risk of disease or mental propensities et cetera. So, that's real and I'm sympathetic with Mr. Carroll's proposals, and I should also mention this, the right to be forgotten that is in the GDPR is extremely important as well. So, these databases ought to allow you to anytime revoke that data, pull it back. That's one of the things in the European law that now American companies are trying to catch up with. But yeah, you need to be able to pull back from them. So, the other suggestions and Mr. Carroll's, I wasn't quite sure what he meant about the patents related to the human genome, there are no patterns anymore on the human genome and so there are no license fees and royalties. What happens with that data for instance, now and actually it does hit an important concern. So, we know the story of Henrietta Lacks. All right? Do you know the story and everybody should? Yeah. There's a book about it and a movie about it recently. Herself, the HeLa line of cells were extremely valuable. She died almost penniless, she was a poor, black woman and it turns out she had a cancer that killed her but before it killed her, her cancer cells were harvested and they were immortal. So, they were really useful in science and made millions, hundreds of millions of dollars for various companies and researchers based upon the research they did. It would have been nice if her or her family could have profited from that research based upon her cells. In fact, they only learned about it much later, the family only learned about it much later than the National Institutes of Health and the United States settled with them and gave them some money and I don't know if we know the amount, it was undisclosed I think. But that's an interesting idea, so we think that people should profit from the way their information profits the World, and that was another reason that we did what we did when we started our company, because we wanted to provide a mechanism for that. But I'm not sure how you know, it's not really royalties because you don't have a monopoly on the data. But for every cell and every use, it would be nice if a company that is profiting could share some of that, I think that's a nice idea. Again I'm weary, of international institutions overseeing or directing that for the reasons that we've discussed. My tendency is to think that the markets were better, or sort that out. In some cases, laws are unnecessary like with the anti-discrimination laws. So, I would say the last paragraph of this about the patents are things that are not relevant, but the idea of getting some fee for usage makes sense and there may be some technical ways to deal with that. So, I don't have anything else really to say about that, the notion of some sort of legal regime that Mr. Carroll suggests here is good and it works in the case of the genome laws in the US. Where you prohibit certain uses of data for discrimination and employment decisions. Okay thank you. Can I ask you, that there are more general questions you emphasized in your answers several times the importance of education, I appreciate that, I agree with that. In our MOOC, we had this kind of humanities approach, in which to us, the arts are very much of importance to educating and empowering the people. How do you see the role and function of the arts without becoming a kind of propaganda or form of instrumentalized information? Good. Yeah, I think in general the arts have a great potential that is generally unmapped. A lot of the misinformation people have about genetics in particular comes through the arts. You know, there's a lot of fun science fiction that is very misinformed about genetics. But properly put in context by good teachers, like yourself, you can use the arts as a way to teach people about the science itself and the issues. So, I used to teach a course on ethics and technology and we'll watch the movie, Gattaca. Okay? That film, I'm sorry? We do that as well in our courses. I think it's a fantastic film and it's raising a lot of great issues and I mean its understanding of genetics is very basic and a lot of it is wrong. But the notion of discrimination by the use of that data, is a good tool for education and I think that it's dramatically very helpful in elucidating the concerns of discrimination based on genetics. But again, I think there's another side of it and that is education about science. As I said before, most of the arts written about genetics is wrong because most people's lay understandings of the science of genetics are wrong. There is a great majority of people who buy this notion of genetic determinism. This is a wrong concept. It is not true, scientifically speaking. So, any number of movies et cetera that sort of reflect that notion are doing a disservice and we need educators to put that in context for people. But this could raise a kind of tension between the arts that are supposed to be free or disturbing or raising more questions than giving answers and the task of science educators who wants to give the the real scientific facts. Yeah, not sure of the tension, I think you just have to know what's meant to be fun and what's meant to be educational. I like hard science fiction. But I also watched The Lord of the Rings, so, I know one is, there were no hobbits or elves or dwarves, but these are fun, fictional characters and I know most people probably know that too. We don't need to crack down on the arts that are teaching bad science, we just need to explain which ones are which, okay? I like bad Sci-Fi too, but I know when the science is bad and that's something that most of the public unfortunately doesn't have the luxury of, and that's a problem because then they have fears. One of the things I hear all the time from people is how freaked out they are that people would want to buy or sell genetic data, and how dangerous it is and how it will reveal everything about them and well you know people are going to create. I'm getting weird messages all the time that people are going to create clones of themselves if they share their genetic data, and that's just a basic aiding appearance about the nature of the science and I'm ignoring them now because as it turns out, millions of people are aware of the benefits of sharing that data and selling it and they're not at all afraid that they're going to be cloned by the government. But, there's that vast majority of people out there who have the preconceptions that are wrong that I think we do have a duty to try to educate about the science. Okay. Our top core more Sci-Fi and fantasy as well but I don't think you have to regulate it, you just have to put in context. We have a question from one of our participants. It's a more technical question and I think it's one of the issues that you raised in the beginning of your contribution. The question is, supposing that in the future we will be able to edit and enhance our genetic data, do you think that this new modified genetic information could be patented? This as it would not just be information but something man-made. Precisely, yes it would. So, right now there are patents on modified genes and modified organisms. And those are consistent with the laws of patents and they are inventive, they don't exist in nature. So, yeah sure, if you were to edit your baby right? You might be able to get a patent on that new genome or that part of the genome which is new and inventive. Now, that poses some interesting ethical problems that are probably beyond the scope of today's course. Was my next question indeed. So, there is an exception in the law of patent that says no human can be patented. And if anybody tried to do that with a human, that would be the subject of a lawsuit immediately and probably the Supreme Court would say, no, you can't own your baby patent. However, if I wanted to modify my dog, or her progeny Then, yeah, there's no reason I couldn't patent that, and there's no law that prevents the patenting of new docs if you'd edit them. You feel this is wrong? No, I don't feel it's wrong. The Harvard mouse, the OncoMouse is a prime example of an edited creature that's been incredibly useful. The OncoMouse was developed. It's a knockout mice, so you knockout genes that help preventing insertion. It gets cancer like that. It's very useful as a model for cancer. That mouse has been very helpful in cancer research. It is patented, and it's called the Harvard mouse because the patent is held by Harvard. Harvard has made hundreds of millions of dollars off it and science has benefited and it's man-made. It doesn't exist in nature like that. So, I don't see an ethical problem with it. It might get more difficult when we arise to, if I were to uplift my dog through editing so that suddenly it can speak and I can carry a conversation with it and whatnot, that might get more problematic because if the reason we don't allow patents on humans is because of their sentience, then uplifted sentience of other animals would pose similar ethical concerns. Are we all done? We still have 10 minutes left to make for more questions from participants or for questions from your side or your side. Well, another question but I think we already touched upon that is if all the cultural resources, like literature, arts, movies can be rationalized in the sense that, can they be instrumentalized at all? I think that's the question that one of the participants asked by nature of it's being a cultural resource. So, I guess that what is said here is that in any work of art or in any literature, there's always this ambiguiness, this complexity that cannot be fully reduced by scientists. I guess we already discussed that and that could be well that will be the value of introducing art and culture in this discussion. I think it is yeah, I know I had I'm I'm very much in favor of the arts as a part of our cultural milieu that deals with pressing social issues and I think it's encouraging that and in my experience a lot of artists are very interested in learning more about the subjects that they're writing on or the filming or painting about. They are seeking out new media as well. So, there is a great potential for cooperation or reflection or dialogue, just simply a dialogue between the artistic community and the public and the scientific community one of the problems I should say is that scientific communities are often disengaged and that's a problem. So, scientific community who might, for instance, take offense at or look down upon the artistic community or the public, the general public's questions or dealing with a particular subject has too much of a tendency to disengage. I think part of the ongoing challenge and this is were the things I have enjoyed doing teaching is bringing together scientists and the public in new ways. So, scientists need to learn to engage better with the public. How do you explain this disengagement of the scientists? Well, l there's a couple of reasons. One is I think historically scientists have been free to pursue their studies and well-funded academia, where they don't have to convey what they're doing to the general public. They have to convey what they're doing with one another, so through peer review, through the publishing process, through scientific conferences they've been able to do what they do without any real necessity for public engagement and only comes later when there's some sort of laps that they have to try to explain what's going on. But I think that's a problem and that's something we need to try to address. I would like to have you know. Yeah, I'm involved in a program at the University of Buffalo called Science in the Public and one of the subjects we tried to do there is try to teach scientists how to better communicate ideas with the public and engage with the public. I think we have another question. Can you read it? Yeah. So, this is another question from one of our learners. You mentioned education as a way to make people aware and gain knowledge about genetics however next generations might hear it? No, I don't know I might think different about moral values than we do from you. So, I think it's a question about the sustainability of moral education on science. Science itself pushes ethical boundaries. New ethical issues of race but also a new field of ethics came into existence. How can you give a course on science and ethics that is sustainable for the future? So, actually that's an excellent question. In my view, I haven't talked a lot about ethics actually today, I don't think I have. I have talked a lot about people's expectations for instance and their sense about what their data means to them. Privacy, I am actually a skeptic about the notion of privacy. One of our learners here who submitted a policy proposal note, mentioned that privacy is really a very abused concept. The notion that you have and even in US law, this field of privacy is very ill-defined legally speaking. I know one of the supreme court cases famous ones that there's no mention of privacy in the Constitution but it's in the per numbers as what the language of that case said, it's in the per numbers and emanations, sounds like some sort of ghost in the constitution. There are ethical notions of privacy that we seem to take for granted or that especially in Europe that are taken for granted, are not shared around of the world. Culturally speaking, the notion that you would have a zone of privacy is a very Western one and specifically Western European. It's not shared for instance in communities here in Mexico or elsewhere in the same way. So yeah, I've tried to avoid talking about ethical absolutes. I noticed that privacy is something we seem very concerned about and people have an expectation of it to differing degrees. But yeah, I think it's better to educate people about the practical and pragmatic and scientific issues that we know about and then allow them to form their ethical judgment based upon another culture or background. All right. We have one more question, we still have three minutes. Well, I didn't have a really discuss the question but I agree with you on the fact that well the issue of principlism, that we need principles to guide us to make ethical frameworks and policies. I think that would've been an approach that doesn't fulfill its function for these kinds of technologies that expand through over bigger rounds of time periods. So yeah, indeed it's about the quest to develop new tactics of Ethical Engagement, advantages. Actually, art is a really good way because art follows culture. Though as our cultural values change, art tends to either proceed them a little or reflect them more quickly than than say legislation. But this kind of ethical relativism goes against every efforts to make regulations on an international level. Exactly, which is again why we should be respectful that our point of view of this ethical notion that we take for granted of privacy is really recent and very specific to our culture. Not everybody shares that. Let's wrap up. Yeah, I think well this is the end of the webinar, it's time. So well, thank you very much for David for giving this contribution to our webinar for, well, reading the policy recommendations that we send you and we select it. Yeah, I think it's also very good for learners to know how their policy advice could maybe contributes to the field. So yeah, thank you so much. Thank you. Yes, thank you to all the learners who also send us your their questions. Yeah that was it. Yeah wonderful. Thank you David. Thank you, David. Have a great day. Thank you. Bye bye!
