Production. For. Those who are sitting at home in, the back. Because. The event will be in the mood for country, and moon. And. Is, also pretty accessible, it's, more doing, today we have a full day conference, for, which you do have to register to, register online so. Warmly heard you if you're interested in, it. Is around evening. We'll. Be speaking, about. Today. So. I'll briefly introduce the, speakers, those, results will then give presentation, Kriss Akabusi, then. Provide, a commentary, and after that opened, up for questions as, those who attend regularly know the. Priority, with some questions from the students can, take this seminar, course, so. Very. Johnson. Is director of research and, research scholar at the Hastings Center which. Many of you may know. Institute. In garrison New York which. Is a leading Center. On bioethics. She. Works on the ethics of emerging, emerging. Via, technologies. Particularly, in Human Reproduction psychiatry. And genetics the, scholarly work has appeared in, leading medical, science policy. Law and bioethics, journals. She's. Calling it is. A right to empower. Human. Flourishing in, an age of gene editing which, is forthcoming with, Oxford University, Press in 2019. And also. A trusted, and technically in biomedical, research the piece of financial conflict of interest with. Those, Hopkins University, Press she's written extensively. For. The media, New Republic's, that use fine Washington, Post and scientism. This treatment interviewed, on these issues in the media as well and. On. Twitter and also. Their, own food. Container. Which is something. We should start using, you. Krista, Posey is an associate, professor of bioethics in fact achievements, in the Memorial University he. Has interest. In the ethics of disability, in repossession, and is, the author of a book that was featured in an op-ed piece also, in. The New. York Times that some of you may have seen which has Center on choosing. Down syndrome ethics, a new trainer in testing. Technology. MIT. Press 2018. Chris, teaches in the Masters of health ethics programs, is, also clinical data system and prevention, health ethics metric, of Newfoundland, in the lavatory, so that's really new, Justine.
Far. Away which, is amazingly. Nice for me and so first. Things first is you really can tell I'm not from, here. I'm not, even from Western Ontario I'm, actually from New Zealand so this is the picture of my broker, up from the airtight open insular near, the city of Dunedin in, New Zealand on Tarawa and. But. I find, myself in, here, found myself for the last almost. 20, years are working, in North America, so mainly. In the United States had mainly but he sings in there which is service beautiful location, in garrison New York I wish, you didn't ever smoke for recently. The. Middle of winter picture. Which. Is a very beautiful location, just about an hour north of New York City I actually, first. Worked in the United States as Minneapolis Minnesota. And I work for a year at her, in. The, office so I always get to see what met because of which we do have in Canada 15. Years ago. The. Heating center is a kind of unusual placement, I quickly tell you what it is it's an independent, research institute, was, founded in 1969. And, it's 50 years ago when. A bunch of things that might sound familiar were, kind of coming up like first sets. Of organ transplantations. Which is got a definition, of death it's like the surgery. Which. We, still haven't solved, and. It's like making this big old building and, we do research there research, was primarily, we don't really teach a live some people teach on the site in. Two big areas just, in compassionate, healthcare in, wise, use of emerging technologies, they were interested, in ethical issues here, shows some little, issues in. Questions. Of social norms of practice, we. Do whole, lot of different projects funded by different people are lots of different topics so if you're interested, in this whole area of bioethics, like that's a good place to go to that out here's, one we have on also on creating. Systems that say people and the green houses as you may know in the United States immigrants. Are, so-called. Illegal aliens, get, health care rights mainly or observed, in indirect, ways in, right now there, are serious, questions about how to deal with immigrants, who are in detention. Facilities to be healthy so that's a recent. Issue and. Then you know a wholly different kind of thing about public deliberation, on the release of genetically, modified organisms in the world so just to say it spins a huge, range of different issue. We, also published two journals. The, first one here Tory is the Hastings Center report which, is, a pretty broad journal, and. It does have issues in it that are legal issues in different add more columns so if you're more people there's stuff in there for you but it's also for looking more broadly effects, of poverty. And. We also have their special reports, inside of there that are submit so on a big issue so this is whether, we just published on the effects of sequencing, new ones so, the use of sequencing, technology, new babies and so it's a big topic and there's a it's, a long treatment of those questions, there's.
Another One on like what makes a good life and end-of-life so looking beyond that looking, at all different issues and. The, universe, Journal has. Been pulled by out the effects of human research is being relaunched in January. You can be certain it's about any issue related to human subject research and. We always have a blog so we look at a bunch of different things one. Of the things that we have a project on right now is. This. One here which is about. Which. Is our human flourishing of gene editing and it's, Trudeau. Said that's where this book which. Is going to have a way better cover the net, human. Flourishing in, an age of gene editing will be coming out next year and so the work that I'm going to talk about is one, as a chapter I wrote for, the book that I'm co-editing, on. On. This under, this broad umbrella of, what human. Flourishing has, to do with. Quit with technologies, like gene editing and the reason we framed it in terms of human flourishing is, that there's. A lot of facility. And our culture, and our society in our legal system to deal with questions of safety and efficacy with, new technologies, so. Those there are mechanisms to assess things we assess, safety and efficacy and how well does that work how safe is it there, are many interesting ways, in which those mechanisms. Function. Or don't function, properly but. There's. A very very. Fluent. Language and, concepts, for thinking about safety and efficacy this. Book is based is addressing. This question of whether or not we have, so. Based on the premise that we don't have that same kind of fluency for thinking about things at a, safety. And efficacy that. Address human wellbeing or human flourishing for, this why, we. Wanted. To focus in that area so if I said to you look gene editing is safe ineffective, but it's really good works fine do. You still have any qualms in how why how what language, do, so. Some of the ways that people address that is like they say well I feel like I'm playing God but, it feels like it's unnatural, against, nature, and so, we took up some who as colleagues are concerned and asked ourselves to be there other ways of thinking about being as a secular modern, language. We're talking about those kinds of consumers, that don't usually, have a lot of purchase, and policy. And practice but I often felt deeply, by an ordinary, people, when, you stopped the Roma Street and asked them about these kinds of technologies, that's, what the books premises, oh. It's. Focused on gene editing these are some of the inventors, of gene the, new gene editing tool Chris Berg and s9 and so, many who's not heard of. Okay. So this is G. Of Examiner on the, right in of things being on the lift their toe of like for, people who are really credited, with discovering. Chris. Macness mine and its potential use in. Mammalian. Cells and, this is a, quite. A good dream in a way of genetics, or, some Denice researchers, be not just to be able to understand, the genetic basis of differences, between humans, and coding disease not. Just to be able to see little sequences. See, the leaders but to actually be able to go in and make changes and. Chris big kiss tonight is not the first technology, to. Make. Changes to genes but it is that one that is receiving, a huge amount of attention, because it is in, many ways more effective, in much much much, easier to use anything that preceded, it I. Don't. Want to get you oh really, click description, of how it works. There. Are better people to do that there are videos online that's playing over speakers, my works the. Argentine, Kevin stuff. The basic, issue thing here is that you get. The. Ability that cuts DNA, which. Can, then means you can, delete. Some. DNA or you can place it with new teams so you have kept the ability to you know it is good right Network, and the, graph that interesting, and I think really powerful thing about this is you can make multiple changes at, multiple sites which was not really possible with the previous two companies and, you can do it in any kind of self so it really is like able, to be used across hours this was a mechanism. That existed, and bacteria, how, bacteria, tick. Themselves from viruses, or doing this but it turns out you can etch the years at any any kind of cell, of.
Humans, Animals. Non-human. Animals. Bacteria. What. I'm interested in is they use me and humans, there are a whole bunch of people including colleagues, of mine from looking at non-human. Animals. So. In new as the users are huge right so you produce them to, make changes to germ cells for eggs you, can use them to make changes embryos, fetuses. Babies, children or else so miss of potential, users sometimes. Those uses are divided, discussed. As being germline, uses, so it uses that would actually make. All the cells are run all the germ cells and, if death will be curative or me I'll be passed on and then, you know many changes that could happen and. Born. Humans, would not be curative, or they would be cement, changes, that have changed neck, hurts um but not history changes that they would pass on so, that sometimes. When. Chris, because mine was first, announced, it, received, gigantic. Amounts of press coverage, I asked. To cut and colleague, a scientist, I know who. He uses this in his work was he knows what. It was like when he was announced, and he said that there was a conference that he was going to a couple of months later and they just scrubbed the entire program, to talk only about crickets and, so I see I was that because it completely changed, how you think about everything means, like no it's the same way of thinking it's just a way in a way of doing it so we all here to just learn how to do it so, it was not a paradigm, shift in, terms of that ideal, at you idea being the same you can make changes sitting but a message, intensity. Efficiency. And. So in the science of a community, of you know, sort of public facing science channels but, in this lunch period. Was like well this is huge like it's going to be a cross-platform. Since. There, was a little bit something that it which makes a lot of things fit right really, quickly, but. It was also of course immediately also things people thinking up potential, uses and humans and especially reproductive. Pastors and. These are much, more sort of fearful in. Concern, kind of images. That accompany. That thought of using, this kind of thing to make changes to. To. Children to future persons. And. Even, to the point where people, were. Asking really like waiting for it's actually being used it's only being used and who knew we owned a few times now in. China. In the newest but. Someone. A little Asian is wondering what editing, your baby's genes being mandatory, so if it's possible to do when you actually have a really strong operation, to do it and, that's a big part of what motivates, whatever. Today. So um I've. Had gotten there up to my tech there as I heard how many people work at the nurses to, read their budget. Okay so some people were, giving it to to, read in some people of. Those readers fantastic, that question and but I. Saw. I'm gonna refer that this chapter but I'm assuming yeah right leads to me that you know if you're not everybody, and have his with so what. Motivated, my tip you're up right but, the thing I'm going to talk about, is this idea, there, either senior maybe these genomes will be in some sense mandatory. In, order to address that I am. Coming at it in a very particular, way so, they. Get that this idea of parental obligations. And what it might like they like to be the kind of future parent, some. Of you may be in this category who. Feels that this is something that they have to do or a deeper has some sort of enforced. Obligation, to use the technology. So. Let me just see in particular what, I'm interested in is, not so much the question of what it might be like for future children or future person's, first genes have been innocent it, is a really important, question what would it mean, to be someone whose genes were edited, by someone else in advance, of being one and a lot of people are you, know asking, that question but. I'm also really interested in the impact, on prospective. Parents. Of this, particular kind of technology so. Even, though. Prospective. Parents their own genes may not be involved. In this technology of it probably would have to have a gene sequence for them I can't say they are not really the direct, subjects, of, the technology, I still. Think there are really important, ways in which their, own experiences. Their lives and interests are at stake and, that, they affect even if they're not the ones on whom the technologies, use, chemically. Really impacted, and possibly even changed. By, the very existence of this kind of technology in, a reproductive space.
So. What, I want to study about their stuff is also, connected to other technologies, so gene editing is not something that we put up that's, currently offered to. Parents. Who are prospective, parents but. There are other technologies that are offered, that are very very related, and raised many of the same kinds of questions from the perspective, of camp so this, is a picture, of newborn, screening. As. We heard that probably. Everybody in Canada certainly, almost everybody, in the United States has, a blood spot taken, and there being lots of questions now. About whether or not we should sequence. Those genes, using. Genome, sequencing, to get sequence, those blood spots using genome sequencing, technology, and really discover far more about, the genetic, makeup of their child in these current. Newborn. Screening, technologies, look at similarly. This. Is this. Screenshot. From a non-invasive, prenatal testing, company, sequiny. Which was this maternity, 21, that was the first non-invasive. Prenatal test, to be offered in the United States that's a blood, test of the, frequent. Person, medicines, analyzed, in fragments, of fetal DNA found. In the blood and animals and. It's a new way of doing pre hair screening it's, not just available Candace, I mean an American heiress to New Zealand and New Zealand, companies, prenatal. Piece non-invasive. We know in the extremists. Canadian. Who, can even. Eat it or. The. Panorama. T6, through this right to some third building this morning to see what your, your, options, have been accessing, non-invasive. Prenatal tests. New. Kinds of prenatal screening your carry your teeth they all raise this question I think what. Is what are the obligations of, prospective, parents, to use or not use these. Technologies, most, of these signal is most is something about gene you having a second but these prenatal, testing technologies, carrier screening technologies. Newborn. Sequencing. There. Are options right you can say no so. If if it's really up to parents, to decide whether or not to use these technologies I'm interested, in knowing more about what, will shape that decision winning and in particular I'm, interested in, the idea that notions. Of good parents. What it means to be a good parent will drive that decision, making, kind of curious to know what that really might mean and seeking. To sort of enriched our understanding what good, parents do, in the face of these different kinds of technologies, oh. Yeah. So I'm. Going to back up a second here because in the context, of gene editing I need, to say why I think prospective. Parents might actually have that option of, altering the genes of those children now any more students, but that's this, assistant. Human Reproduction it candidate knows you actually can't do that today candor it's illegal and it's, not just in Canada there are a number of countries around the world Brazil. Australia many. European, members that have legal, prohibitions. On altering, the genes of a future person of. Optimism. Or any themselves. In a way that will make a period of a change. There's. Not quite the same law in the you mean so, people. Who are not, owned from New Zealand by the legal, system like, kind, of like you can hear when, I first got that you a smoker have a treat you like this kind of. This, is the quintessential, example that, you can't read this but this is the Dickie wicker amendment so.
One Of the ways that the u.s. regulars, stuff. In this area is, by having prohibitions. On what you can do with federal money which. Doesn't say anything about what you can do with non federal money but there is the standing, prohibition, against using federal. I need to do anything that, tons of ultras and payments, to human area so. That would that's a huge impediment to researchers, and even states develop, through gene editing technology especially journal and any editing technology, which is a coke, use federal money sure but some. Of them have done it anyway right so just like they did peculiar. Extensive, research without using federal money there is a way around this but it's like one of the ways that the regulated. Press the more important, right now is that since 2015. There. Has been a prohibition. On the FDA, considering. Any clinical. Application. To. Use gene either their party to change the genes, of other embryos, so. That. Has, far-reaching implications it's. Not just something that. Impacts. People who have federal funding, it's anybody, who wants to go to the FDA for permission, to offer a clinical, service of gene editing for. In the reproductive, sphere so right now in the US it's also not something, that, you can offer, totally. Different they're like not regulated, through the criminal or a by yours. Interesting. Students, public. Still. Even. With all these berries, and plus, we. Know that, determined. And well resourced, parents, will work around these controls, and, find jurisdictions. Where this, is not perfect, that you. Even saw that in the US where a research will went to Mexico, and 2016. To do mitochondrial, replacement, which. Is a different, kind, of technology but similar right when we you change the mitochondrial, DNA of the, embryo. So. Even, American, physicians, find ways around this in certainly, well determined parents find waiting, around in well resourced parents, find ways around these, kinds of collisions, today. You can see that in rhesus. So. It, will be parents. Eventually. This. Is proven, to be a safe enough that it. Will be parents who are asking themselves is there something I want to do is this something I should do and, if so you know how can I be I. Also. Think, that efforts, shown to be safe and effective there. Will be significant. Pressure on those prohibitions, to. Relax. Them at least I want so. In the United, States. Few years they changed, the law to. Accommodate, you mitochondrial, replacement technologies. Had. A law prohibiting germline, changes, or genetic. Language. Exactly but it certainly caught, white opened replacement, technology and. Prevented, the use of the technology that had a huge debate in Parliament their debate stated consultations. By the human fertilization learning, ecology authority, around the. United Kingdom and they ultimately took. About inch in, parliament and changed, the, law to allow for money would you replace antenna which is allowing. For a chronic, poverty line or heritable. Genetic modification. Part. Of the way that their headman was that they hit multiple. Families, women. Who stood up in toll Parliament, of the children. They had lost the pregnancies, they at lost and of the suffering, that they had endured on account of my country disease and that, proved to be very expensive. To, members. Of parliament but, also the general public, so from, the beginning of the process to, when they took the problem if you direct lots of people change their position on this issue because, of the really, stories and I'm going to seduce the Fitzroy eventually, I, think. Was actually a story. For public, deliberation. But it definitely demonstrates. The, power of strong, stories, of suffering to change, this kind of floor, so if tearing is the finger I do. Think, that many jurisdictions will. Relax it's, not completely, do away with their, standing, provisions, under German weather modification. If that, happens, I. Think. That the decision, will likely risk, with parents, and prospective parents they, will be the ones to decide they, will have the authority to decide whether. Or not to, alter the jinx of their prospective children, in.
Events, They do do it in what ways which genes have my face or what face, how, will they decide. Well. We have huge discussion about that Christine I think lots of things will influence people's, decision making when though two decisions, will be the same yeah. If you look at patterns of decision-making about, the use of other genetic, technologies, and similar contexts so these reproductive. You know prenatal, testing. Use, of sequencing, and new ones you. See among, other considerations. The idea, of good parenting of, what a good parent would do a virtual equation, what what wonder, what would be good, to do will. Definitely, play a role, I predict, and. There's, a bunch of research that I could draw a room but I'm actually gonna highlight. Work. Lead by train. That. Was done here in Toronto so. In. This, study, which. Was covered in 2016, in the Journal of beautiful innovation, gentleman. Correct us and the question Tiber I see, in this study this idea, of good parenting at, work and people sufficiently so, let me just say a little bit about the study so. This is the study at a specific heads right theater in which. Genome. Sequencing, was offered, to parents, whose children had been referred to the hospital's, genome, clinic for conventional, genetic testing so they've been referred for some reason something was going on and it seemed like it would be a good idea for them to do it in it confidently, tested, and they, will offer this much bigger kind of test then, the kind of standard genetic testing we just look at particular, genes of interest or things that you think might be going, wrong the genome sequence ain't much much much casting. The net much much wider all. The parents who agreed to have their children's genome sequence, were informed, that researchers, would return to them any news news, and any variant that's, known to predict a childhood onset disorder, so if they were their first sort of X problem, if we, found this Y thing which is another childhood condition that would be returned whether, or not they hit anything and anything related to it so. On child and once it conditions, so, then the parents were given the option, of a-leaping to learn whether, their child carry gene variants associate, the number of medically, actionable, adult-onset disciplines. And. They could also learn whether they themselves carry the same gene variants so. In this study most of the parents elected, to learn these additional, results about the children, even, those affected they opted not to learn the same thing about themselves but, just think about that for a second right so get our on seat conditions, they, are medically actionable parents. Opting not to learn it about themselves which, is a phenomenon, that's well documented outside, of the study but people do not want to know certain things about their, own genes, but. They do opt, to find that out about them to their type so why well, researchers, who've interviewed the parents to. Ask them about these decisions reported. That many of the parents expressed, actually, quite a bit of it but once about, getting, this additional, information which. They realize might be difficult to deal with in a number. Of ways yet they agreed to receive the additional results, about their children, because. Of and this is a quote from the study a procedure perceived, moral, obligation, to learn to the extent possible the. Full range of current, and future risks, for their children, no, matter how unpleasant. The. Researchers, called this. Inflicted. Thought this seems that people reflect, on themselves that they really ought to do this thing that they know it's going to be hard in my prison and it. Was so powerful he felt by their parents and the study that the research has concluded faced. With this opportunity the, opportunity to receive and this, this expanded, set of results, parents. Felt they had no choice. So. Really strong scenes and the study and other saying you know testing, economies. Same thing a really, strong sense that what, one ought to do is make some ways once use of these technologies, and find out as much as possible.
Well. Of course you, won't be surprised to learn that that idea is very much in concert. With companies. Like 23. Meeting what they think about genetic, testing regime, it. Can offer so here's in widgets key talking. About who's felt one of them to the family Sierra 24 me talking. About genetic testing generally. And she says I tested my son as soon as he was born and I tested my daughters in the affluent so she did. That. I get any other you. Know sentences, genetic. Testing is a responsibility. If you are having children so very strong, language around the idea that you need to use these technologies if you, are contemplating reproducing. If. You look at non-invasive, prenatal tests the websites for those companies you. Also see, a lot of language, in the air that gets at the idea that this is what good parents do this is good mothering, your images of sort of idealized, mothers, and children are, in a lot of these websites a study. Of the, of this Internet advertising, for non-invasive prenatal tests, was very critical of the language, used on the, on the as. Being but there's so many things one can say about where these things are advertiser it's misleading in a bunch of ways but, one of the things that the, researchers who looked at this analysis. Said is that they, thought it should be mandatory for, companies, to clarify, that. No prenatal, tests can guarantee, the health and well-being of a baby so. This if you think about this is that because Korea, pretty quickly that nothing about the test is going to guarantee the health and well-being of your baby but just tells you stuff, about new genes but, people. Felt that that they felt that the web sites were so misleading that people might actually think, that they have to use this technology because it will actually help their tops health that's. How sort of it's the kind of language, and ideas. That are swirling around that, area well. It, turns out that the person in charge of the National. Institutes of Health Research is, like the biggest product bit of biomedical, research in the world Francis. Collins is also super keen on. On. Genomics, and the use of genomics, and all sorts of qualities including, he. Doesn't, talk about reproduction. Rates I talk about their for reason is that you probably met him but he loves the idea of using genome sequencing, in newborns, and, if you were sequence your newborn why wouldn't you sequence prenatally, it's only a matter of months difference, right so, he sees in 2012, 13, is surgeon whole genome sequencing, would become a cloud annual screening will, look back and be like why, did we screen for such things still. Really, King as for, 2014. He. Thinks that the availability, of cheap efficient, penis technology. Will, lead to a landscape in which every baby's you know in a sequence, and information. Is used very optimist. That we're here to shape a lot of personalized, strategies, for disease prevention detection. And, treatment and there are even people who go further into me who use it to shape kids educational, experiences, and it, speaks of the whole life so this, idea. He's. Not going to say that he's, probably not gonna force that some people like it isn't did this but I don't think he's in favor of mandatory, genome. Sequencing, of every newborn baby not, quite the garret the scenario, but. Presumably he thinks that everyone would choose it right he's so convinced, with the benefit of it and he thinks that people would choose parents. Would choose this wife. I see is no reason apart from politics, why he wouldn't say the same thing within the prenatal party. This. Idea, that good parents choose to use genetic technologies, to the maximum, extent I, think lies, on, the risks, on it on a bunch of dubious. Notions but one of them is the, one that I want to talk about what I think is actually less obvious, is. That such. Use of the technology will benefit, the child or the future type but, embedded, in all of these people's enthusiasm is. This sense that this will be good for, the child and there's. A clever way to show, why. Prenatal. Testing doesn't, benefit the child there, isn't really anything you can do mainly right now in terms of Enochs that leaders but in, most cases but. The case that gene-editing could benefit the child of a future child could actually be very strong. Right. So showing, that if we knew something we can intervene either. With. The embryo or germ cells or even in utero that. That could benefit the future child by giving. Editing. Genes associated with the disease or, disability or, even just things that are socially, desirable and undesirable gene.
Therapy Might. Educational. Attainment, there are many genes that are starting, to be put together show. An association, with educational, attainment. Editing. Those students, on our particular way of thinking could, indeed be very beneficial to, their child or future biological. So. If the technology works well no no that's a big thing we could talk about it but I don't think it's the most interesting thing actually and if scientists and companies support the notion that using the technology, will promote the child's welfare that. It's not just consistent. With good parenting that it's actually constitutive. And parenting. Then. You would very quickly potentially. Reach a point where utilizing, the technology is not something a choice or even an opportunity for parents and prospective parents, not merit merely something that good parents, can do for their children but, a new responsibility, of parenting, something, that good parents, ought to do and. What. I want to argue is that doing, creating. That situation, actually, places, really significant. Variants on parents, that are almost never mentioned, in these discussions and there, are really really significant. Okay. Potential. Burdens on hands and my paper, and the chapter I go through these in some detail but I'm not gonna spend very much time on any one of them except the last okay. I'm about me about them a few questions so, potential, greetings on prospective parents, who. I think I've coped invisible, honestly in this conversation usually. Physical. Right so a lot of this would actually be right, now all done by bees, that is not, insignificant in, terms of the physical presence on. The. Other person who's producing the is in. Going through their transfer so really significant, potentially physical, burdens. Tigers. Time, birdies before doing my gift time burdens for sitting down with to a position and talking about the sequencing, about the testing embryos, understanding. All of the different things that have been communicated, to you trying, to decide what you're going to do huge, train burdens not actually, how people reproduce today most most, frequencies, are unclean, within that means, this.
Isn't How people reproduce right now they're much. Much more time consuming. Cognitive. Burden is actually some evidence of this like the sort of burnout that you get when you receive huge, amounts, of information about, gene and, gene variants, of variables. Of penetrants and uncertainty. Like how I didn't even make sense of it you look at the choice literature, in this like in psychology, see that, more choices often actually really. Really difficult for people to even process and I'm not being mean about us but, I think like we have good reasons that we don't deal. Well with gigantic. Amounts of early on certain with your very, information. Emotionally. Very, very difficult potentially. The prenatal context, this data showing that and content. When people are seduced, some use of sequencing, technology, and prenatal. Testing in a research, context now and, in. The course of doing those people receive information often about themselves, or about their partners, and it can be very disruptive, to, relationships, it can be very taxing and, distressing can, also be very useful. But like there's an emotional, content, to this and it's. But. They'll work Oh and financial, right like is, this going to be part of what people feel, they have to provide. For their children if it's not provided, for by this day so you, know I love only you isn't when I first got there people were like oh yeah we put aside like sixty thousand dollars for our daughter's wedding we, couldn't wait aside a hundred and fifty thousand dollars so our kids could go to college each and I where do you get the money from so, the, idea, that you, know it could be that parents, are supposed to come up with the funds the tens of thousands of dollars it might be necessary to use this, you know me so big financial issues really. Won't you know if this if it comes out of profitable obviously also you not be something that people can equally, it but. The money wanted to talk about a little bit more is identity, and values. So. Some. Uses, of gene, in a new technology and reproductive context, I think might conflict, with prospective, parents, identities. Or, there's value, is such that using the technology, could require them to act against. Their boundaries or their deeply held beliefs. There. Are a couple of examples I'm going to give of this one of them is. That the. Use of the technology, could. Actually conflict. With your views. Commitments. About. The nature of disabilities, so, a prospective. Parent who sees disability. As or, at least um disabilities is thoroughly consistent. With, flourishing, who would, be could, be faced with the decision we are asked, to or. Given the opportunity, to for instance it. Genes, associated with, deafness or, with. Some. Physical, disability, perhaps albinism. Blindness, and. Suddenly, you are actually, implicated. And acting. Against. What might be your value which is that it shouldn't matter and, these. Are significant. I think conflicts. Are here or in course of their life story another. One might be your understanding, of the nature of parenting, what, you think parenting, is about for. This prospective, parent perhaps, the parenting, role privileges. Acceptance, favor control, measures. And reluctant, to use Gina I think in earnest because being a parent, who knows this much about and exercises, this much control over their. Child's, genes among flex with. How they think about themselves and what they think they're, doing right so some people don't see eat having children as kind. Of making right or fixing. This. Person, but actually accepting. About being surprised, about receiving, about being the recipient of this, phone that's unknown, so. That if it gene, editing and the reboot up the countries would. Make. Give us the option that, prenatal, testing, and implantation. Some, won't give us that too much better extent this idea that we can actually control. Experts. Of our future child that we can fix them if they're broken in some way and this, way of thinking about what parenting, is is, really in conflict with how a lot of people actually think, about parenting. So you can look at various studies, of like what, people think about the trying to babies and stuff like that and people will raise these questions of a life I don't know if I want to play God or like it doesn't seem like the right kind of thing for me to be doing in.
One Of the studies referenced, in the booklet we are going. To be publishing someone. Who main focus groups I think in the UK, reported. That. Some. People said that too much control risks, compromising. A fundamental. Feature of parenthood, one, that benefits parents. As much, as it does the future child and this is this idea of just not being in control of everything. These. Burdens, on parents, all of them but including, this one at the bottom here about your values in your identity are, seldom acknowledged, and there, won't be experienced, by all parents equally right like all not all prospective, parents will, be similarly. Impacted, by those some, of them will be fine about it if you are the queen of Griffith you fully subscribes. To our Christmas, book I think all sort of a neoliberal. Capitalist. Mentality, about mix amazing, this sort of productiveness, of your future top this there may not at all comfortable with your identity in your values but, I want, to suggest that it's not happy everybody currently thinks about this. Now. Does this potential, clash between the best interests of future children and the flourishing, of prescriptive parents matter if. You're the kind of person who thinks that. Parents. A good parents sole obligation. Is to the best interest of your child in, that right like it's warmer what we think good parenting, is is about. Just, about the best interests of children then why do we even hear about this it. Doesn't matter and, there. Is actually how we often talk about what, parenting, is about but, if we think in this is what I think obviously that. Good. Parents, also need to take their own interests, as persons, into, account in these decisions and yes the burden on parents is, relevant, to understanding what, good parenting, might mean than, an age of G meaning I'm going to just super, fast go through this but I want to tell you that it's not just the. CEO, of, 23andme. Or the head of the NIH who, thinks of genetics is enough you know so unbridle good and something that should be used that there are people in philosophy and, if X we've been arguing for a long time they're the, best interests of children require, parents to use these technologies, in, ways to sort of make sure that they are come out right tracer this is Ron green saying, we should strive to give our children lives unimpaired by serious, genetic disorders, and, that we should take reasonable care not to. Avoid. Look not to avoid doing. So by inadvertence or deadly so essentially, saying if you don't do this it's a kind of neglect really. It's a neglectful, parent and. People, know this guy doing Enceladus views really famous for this, idea of procreative. Beneficence, the idea that you actually can, you. Should select the child, who's going to give the best possible life and here's a very specific way of thinking about the best possible life is like you, know the most success, the most. Happiness. And, a very utilitarian perspective. It's. Not just people who are in favor, of this kind of selective, mentality, who use the best interests, of children is this sort of grounding, idea but, it's also actually some of the critics, of. Reproductive. Genetics, also are really grounded, and beast of children so this, is not yoga Harbormaster, this is Adrian Ashraf you're going to have a must, who's critiqued. Genetic. Technologies, is, has said that he thinks it would damage the child's relationship to, the parent right so being a beast as a hedgehog, focused criticism, I drew, an edge in Rockville Center is, a. Good dish who are, opposed. To, excessive. Use of genetic technologies, if not all users think. It's not part of the good of the norms of parenting somewhat good parenting is because good parenting, includes. Fostering, in supporting, the interwebs, the uniqueness of individual, children, again. Still actually about what good parents do quiet children way how they are took the children 7th century. I think at this interest of children Sinan we send out saying, that we should have appreciate, children is guess he actually a little more getting in the direction where I'm heated about how it, is for us but it's not, explicitly, focused on parents, well-being.
A Flourishing, I think. It's going to be hard to actually. Do. This work of helping parents in and prospective parents think about their own interest, as persons, inside, of, this. Context, so to help prospective, parents, and, then we need to provide them with real choice and by real choice that's my shorthand for like actually. Supporting, people to not use the technologies, and not just in the moment and the clinic supporting, them but having social policy and face it made it possible for, the, integers, other ways. Which. Means routinization and, social pressure real problems as, I like you, know this is Canada right somewhere like you're probably all this all figured out but I live in the United States we have significant. Problems for people who, have. Children with various kinds, of positions, which unit defenses. I. Think. People are going to need help to reflect, on their own interests, is part of what parenting, involves, and. This. Can happen and the clinical context but it can also happen in churches, it can happen in friendship, circles it can happen on Facebook, it can happen in universities, it can happen through the ice so actually I think the arts is really good at this if you look at Danica. Or a Westworld. Or any of these dystopian. Films, they're like reflecting, on some of that stuff really pretty well I only think that seriously. I mean. And. Of course I think you need support of laws policies and practices, surrounding. This so that people really do have the option of choosing, a different way of thinking about what, this is all about oh. I. Put my scoops I put myself up, here because. I was like other, people's photos give me. Good. Perspective here, is have responsibilities. To future children, and, themselves, I, don't, think this should be controversial, but I actually think it's almost an MSc the, burdens the gene-editing could place on the MAL, prospective, parents are relevant, considerations. To be a decisions, about whether and how to use these emojis it's. Not selfish. To, think about your own interests in your own like story and how you are as a person in this context, it's actually incumbent. On the rest of us to. Recognize, those the burdens, that come with this technology and to be open to supporting parents, who elect protect, their own flourishing. Here. I am with my, little by. Little Joey, thank. You. Good. Pitch okay. There's. The Tribunal for the each. Other for the invitation. To comment. On this excellent paper in Thank You Justine for, the. Opportunity, I'm. Gonna be, a little, bit of a wet blanket and, maybe second-guessed. Some of the some. Of the claims that you're making in your argument, but, that's a good sort of throw in the interest of furthering the discussion, if. So so. Lucifina, match is a future, in which gene-editing. Becomes, possible, as a way of preparing and, improving your children's genes. She, makes a very central claim based. On a prediction. That editing. Your, child's genes in the future will become a norm of good parenting so. Not necessarily a legal, requirement but, a strong. Social pressure to edit. Their genes and. She. Lines clearly, how, and why this could be particularly. Burdensome, to parents. She. Aligns physical, burdens cognitive, burdens of other standard genetic information. Provided. By sequencing, but. It would be burdensome financially. And it, also might conflict with values. So. She. Draws the conclusion consequently. That we need to also, include, the well-being of parents, of thinking. About what it means to be, a good parent, and. With, you particularly. With the availability of new reproductive, technologies, like gene editing. So. The central, Kevin I want to focus on is this prediction, that it will gene. Editing. Your children's gene, sort, of. Quasi. Mandatory, become, considered. To be a normal good parenting. And. I'm. Gonna propose a maybe the prediction, won't, come true and, what. Really is at stake here is I, think, it. Matters how. Gene, editing is delivered, how. Its operationalized. In the clinic. If. It's if it's delivered. In a way that's particularly burdensome. Then. I think those burdens, actually. Suggest, that. Undergoing. Gene editing for. One's having. One child. Will. Not become some comment so she does such a good job of aligning the. Burdens then this is just to be so, burdensome then, there. Are reasons why. Gene. Editing won't be considered to be mandatory and.
If, You look at. Physical. Burdens alone I think, this suggests this possibility. I was. Kind of on the edge of my seat when just he was talking because, I was the, comments that I kind of developed here were based, on her written tax which. Whole. Thing and. She kind of skipped over some of that some of the parts that I'm I'm. Commenting on particularly but I think so. I'll kind of fill in the blanks here. So. As I said it matters how gene, editing is, delivered. In, figuring. Out whether it's this, prediction is going to come true. In. The text, she describes, how. Gene. Editing would. Become part, of the IVF, process and. So. My kind, of. Suspicion. Here, if it is part, of the IVF process. Then. It's. Unlikely that that. Gene-editing. Would become sort. Of a mandatory, norm, of good parenting and, that's because. Well. When you know about what IVF involves, it's really detailed and really burdensome so there's egg harvesting followed. By in vitro fertilization. So fertilizing. The. Egg and a petri dish, then. Genetic, sequencing, of. The. Resulting, embryo this. Is the part. Of the gene editing then then, editing, the genes, based on the information provided by the sequencing, then implantation, of the edited embryos. Followed. By pregnancy. And childbirth so, physically, this involves. A lot so. Egg. Harvesting. Involves. Multiple. Hormone, injections. With. Associated, side effects. The. Risk of ovarian hyperstimulation syndrome, you. Would take on when you're harvesting eggs, and from. What I understand this is really unpleasant it can actually kill him. Egg. Harvesting and, embryo implantation, involve, multiple. Transvaginal. Ultrasounds. I don't. Have a vagina but sounds, like something I would want to avoid. As. Well be generous or. There's. More drugs, on top, of it all you, have to think of all the additional appointments, to the doctor, that would be involved in getting pregnant just to get pregnant when. For, many people. Getting. Pregnant is other easy. And. Fun yes. So. Recognizing. All of these birdies in detail, suggests. To me that it's unlikely, the social, arm would, develop in which doing all of this would seem mandatory. And. What's. Telling to me is. So.
Some Of the quotes. And the evidence. That you cites suggest that some. People think that this, sort of thing would be mandatory they're actually talking about different things other than this kind of IVF. Process that, involves sequencing, and gene editing and then pre-implantation, and, so on so the sick. Kids study James a study that she cited is, is actually all of a post natal genetic, testing comparatively. Easier. Easier. Certainly. Less burdensome on. Pregnant. Individuals, so. The other examples, the. 23andme, one the Francis Collins example. They're. People talking about either prenatal, genetic testing or. Whole genome sequencing, of newborns. And. When, it comes to the the non-invasive, prenatal testing, discussion. The. Whole idea that that, prenatal, testing, the. Worry that's going, to become mandatory, has. Emerged, as a result of the fact, that prenatal, testing has become so much easier so this there's sort of a coincidence, of the easiness of it and Anna, worry that is going to become mandatory so. These all. Of these things so postnatal. Genetic testing or postnatal whole genome sequencing, or prenatal genetic testing. They. Seem a lot different, from prenatal create. A sequencing, and editing as part of an IVF pregnancy. So. Postnatal. Genetic testing, and multi-room sequencing, and prenatal testing, don't. Have the same. Physical birth, with the. Whole IDF process, that. It. Seems to be, the. Process that she's. Saying would be used for, gene editing at least the way it's envisioned, right envisions. Right now. So. Perhaps, a closer analogy, to the process, this IVF process is. Pre-implantation. Genetic. Diagnosis, which is already. Available. In the part of sort. Of a standard part of IVF these days. So, with. Pre-implantation, genetic. Diagnosis, you undergo IVF so, that whole process of egg harvesting. Fertilization. Outside, the body and then, before. Implantation, you test the resulting, embryos for a suite of genetic conditions, and, you stipulate the kind of ones that you want to avoid and then, you only implant, the embryos without, these, genetic, conditions, that you want to avoid. So. PGD, pre-implantation, genetic. Diagnosis, would. Actually be these, days a better option than sequencing. Engine, engine editing, gearing during IVF for parents who want to avoid giving birth to a child with, a heritable, serious, genetic illness, so, if you could for instance if you know you're a carrier, of a serious genetic illness, if you want your children to avoid it there's. Already this available, to you you can go, through IVF and have PGD and that implant only, the embryos that don't have or, don't carry the condition that, that you want to avoid it. Involves fear steps and probably. Less cognitive burden so, for that kind of that kind of scenario where you know you have a condition there's. A risk that you could be passing on to your children, PGD. Is an option it seems to be a. Better, option than actually. Editing, the genes as. A way of avoiding that condition. So. What's. Interesting about about, PGD and IVF even. Though it's a pretty kind, of similar kind, from the, Josephine's.
Talking About at least gene, editing as part of my VF what's, interesting about, PGP. Is it it doesn't seem to be a really, large demand, for IVF, and PGD right, now. Except. Amongst people with fertility issues or single people or gay, lesbian, trans individuals, or couples and. To. Me since there isn't a really high demand for this, outside. Of those groups suggests. To me that there is no norm of good parenting, that, pushes people to undertake, this kind of, genetic. Testing as, a part of a really, earnest in process, like IVF. So. If that's the case then maybe there. Won't be a similar norm of the, more for. The more demanding process of IVF sequencing, and then gene editing, if, that's the way Janine, is delivered. So. All that said if. Gene. Editing is developed, in, a way that's. So, it's delivered in an easier fashion. Either. So. You can imagine maybe scenarios, where gene editing could be done I don't know how may, be done in utero somehow. Postnatally. Somehow, I don't know then. This these would be a lot easier at. Least regarding, the physical, burdens, that are associated with IVF, we avoid all of those burdens, if. This sort, of method of delivery, for gene editing. Is. Developed, then the. Best are all off so I mean with the, critique that I'm advancing here wouldn't, wouldn't. Obtain, different. So. In. That case I could see editing, the genes, children might become viewed as part. Of good parenting and to. Me that's personally, a frightening, prospect so, developing, these comments, was, a way of kind of reassuring, myself that, okay maybe this won't happen but. Gene-editing. Maybe won't become sort. Of a mandatory normal, good parenting. All, that said Josephine's. Presentation, is a welcome meditation, on what it means to be a good parent now and in the future. Before. You question. Baby a quick, moment it makes. Me think of. Wanting. To have prenatal, genetic testing, and. Both. Of them. One. With the long span. Label. Own cells genetic. Disorder, which was non-lethal, relate.
To The sensory. Capacities. Of people, and the other, regional. Blastoma, which they wanted to avoid and. They were actually told by the. Genetic specialist. Healing. Specialists, that, they refused. To test. Only for one of the conditions, they, said we're, happy to help you but. It has to be to, citizen. We, didn't didn't pursue it further but, but anyway so these things happen these are not legally. Prescribed situation. Very situation, where the carnival need prenatal. Pressure. To do to. Exclude certain condition, this is is a really present I knew I, thought this is interesting to kind of hear what their comment on that connection. Oh you. Don't for questions I'll keep a list but. It. Was. Mr.. Quillan so guys I don't want you to be right but I fear. That you've not Somali. So. I. Think. More, of these technologies, are taking up then then, within, these questions suggest, actually and. I think the mentality, that there is a future in which they, will be more readily hooking, up is already quite present and, a lot of the discourse around genetics, and the research context. So. There. Is this thing called reproductive, benefit, or reproductive, planning, benefit, there. Is a kind, of an emerging. Benefit. Of having your genome sequence, as even. If we can't tell you anything that you, do anything about in your own health it. Might be helpful for your reproductive planning. And there. Are. Children. And adolescents. Who steam rooms are sequence and research context because they are usually the kids who have something going on anyway and they're in genetics. Clinic and then they're enrolled in these studies. And. Sometimes. They don't find out anything from the genome sequencing, about the actual condition, because, we, don't know that much it. Other. Reasons that's. That's why something else because there's always something is something in your genome for sure, and, they'll. Return that to the enemy, Senate or their child, and. And on the basis that will be helpful for their reproductive planning, and so, baked into that idea unspoken. Is the idea that you will actually never use this information to avoid, having a child with that what, genetic grand whatever it is, and. Really there any ways to do that now I throw these high-tech interventions. Right and it turns out probably that means the people they're telling us to well I'd not be able to afford it or be evil just get pregnant some other way but, it then, means that they sort of didn't do what they were told they should do. So. I'm one. On the one hand I think like yeah really expensive, invasive. Horrible, things, right now but, I. Also think that the future in, which they use Morris fully, at work in the discourse of all Silicon Valley around genetics, most.
Of The u.s. genome. Program which is junking Sakhalin twelve points, huge. Amounts of research. Looking, at the use of prohibiting, and other. Technologies, and Eve Rios so I think that, there will be there. Is already sort of a significant. Investment. Even. Just financially, in this future. There's. A book. Called the end of six by. Hank Greely that talks about something, called easy idea, which is where they were just used, somatic. Cells skin cells, to. Create embryos, and then you could create hundreds, of thousands per person that you can look at them for everything and then tweak them inside so I, don't know how realist I mean when. I you know when I leave the US this happens to me every time I go to New Zealand and I start to comments on this stuff I feel like I'm like spooning, crazy, smoke what. Are you talking, about, but honestly, this is hugely. Like. In visa in, the u.s. in, other, countries that we will infect, not. You but, my kid who's, annoying that, she will. Have. Far more, genetic. Information about, her own genome and that she will use that information to, at. Least Philippe, against. Certain. Traits in her, and why, you know I'm, so in a fantasy land here my grandchildren. Right, like that she. Will at least use it to select against, um. Whether. It's because she can do easy ideas, or, whether she knows you, know hard IVF, and I will note that like it's awesome than you said about IVF, but like the idea that might be if there's been some whiny, woman is it's. Just not good to it I, mean it should be talked about a lot more. But. No one seems to care much. About it so. I thought out so it's, people stop here and without helping somebody at this one some people have to go through the retrieval but. It hasn't been that, this course that's why I write in like 40. Years of ideas, there hasn't been a whole lot of attention paid to the fact that its owner is for the people involved so. I don't feel super optimistic, about them I think parents, who then, these we have a history, open here at a disease do in fact feel. A significant. Obligation, and go through by, being for PGD and there's. More and more of us come to see that we have things, that we could pass on their bed, build. The, vo larger, audience larger, customer. Base for that same thing. I'd. Love to be wrong right like I'd love it feel like no we just don't do that please you're, doing it the whole way back that's, not the future I see being in recent years. Ago. So. I'm. Definitely the best union. Wasn't. Really. That. I. Mean. There are like countries, where 90% of people, who have been concerned about diagnosis, prenatally, terminate the pregnancy you. Could say that's just because that's full choice or you could say that there is social pressure at work I mean there's a lot. Of. Stuff like, yeah. Things, are changing right so the technology, is getting better it's getting easier and you. Do see, more and more the discussion, around the idea that it's, going to become sort of mandatory. Quasi-manager. Not required. So, that's the fear yeah, I mean. Yeah. The other thing is such as ease of use for this accuracy, along, with the ease of use so. One of the things that's sort of a prevented, it prevented. Some of the screening processing, creatively, from becoming. Sort. Of taken. Up in. A widespread fashion, was the fact that the screens were really accurate, for a long time and, they're getting better, to. The point that there's even the suggestion that pretty. Soon you won't need things, like the amenity of some pieces which has a risk of miscarriage which. Is a real deterrent for. Some people it's a very small risk but it's but. If you if you eliminate that risk and you have pretty. Clear diagnostic. Information. Using. Just a blood test then. A, lot of people are going to say well why wouldn't you just do it it's just blood that's right and it's it's really I mean it's nice thing it. Prenatal. Screening is routinized, and Lluis and Lluis 2010. Country's people, don't even remember that they were there was a choice that they made em neo yes because I was, a big deal we live to go to a different place for it like a thing that could say like a decision, point but, other kinds of testing that happen in prenatal care routinized to the extent in in a way that's completely inconsistent, with any. Kind of. Just. Type what you do and, I tried to say no to one free no testing God everybody, gets it freaking me because I don't want me to do that so no it's it's yeah it's pretty you.
Have To do it immunity. Apology. Bridging, anything but actually put in conflict, with advances, in disability, rights yeah so, disability, rights discourse. Is like one of the wonderful. Ways. In which we have become better humans, over the, last few decades I, don't, take any credit for us it's not something like to leave but I'm a total beneficiary, of their whole. Literature. They're. There, tomorrow progress, I think it's an example of moral progress the way in which people now, discuss disability, and the idea that like everybody's. Kind of got some sort of display it's almost like we truly become so consumed ways that it's like that, the way in which that's a richer and more I'm questioning. The skeptical. Discourse. Around they understand, the extent to which so many things we have no size disabilities, it's socially constructed, you know the neurotypical, movement like all of those things I like to be helpful for. Creating. A, kind of support for the idea that this is not how, you have to think about these. Technologies, right that's the counter-narrative, out of the counter narrative, but I stopped heartily. And. It's it's really good it's a helpful thing one. Of the things that's just coming, in on the last few months is a whole bunch of research on local ecology, and at risk, scores. Are found which is. It's. A big data kind of an hour approach, to genetics it's not not. Looking at causal mechanisms, but just seeing like are there many many many bit genes malting gene variants, that when you add them together seem. To give an increased risk, notice, the word for, certain things and one of the things that's being measured is educational, attainment, so, you can get a quality at risk for for, your chance of completing, different. Levels of education and, it's, actually. In. This. Populations. In which the research was done so, it's not Universal, high school across different countries and ethnic, groups. Heritage's. And it's really productive and. So, you know they'll be selling polygenic, risk or testing, for, sure for. People and you have a bunch of embryos in some of them will have a higher polishing, it will score than others and. That's. Really. A great like that's something someone's before, all really figuring am not gonna sell and so. Yeah. So I think like yeah disability, you might be coming with us but we're not more nuanced, about things like IQ or. Educational. Attainment. Some. Other things other. Other, traits that are called disability, but are highly socially, valued, or disability. We. May get a, genetic. Entry exam to law school I, mean. I think about that I. Don't know you see I think that like we won't make quite the same mistake, to be made in the past right like, we might do this but. We will we, will do it at the prenatal talk we will we'll, sort pre nightly, or. Premium, complication, we read. Read read, read will tone. So. My, question. Consequences. So, when you're in your chapter and. Asking, parents to hear, that, that particular exceptionally, good parent is akin, to asking them, to cease to understand, themselves as, persons, so, I'm just wondering this anything that, we can add to that to talk about the consequences, of, our, take the analysis of it further or data to show that an adverse signal. Logical impact on this making three obvious answer. Are. Severely wrong in principle I, think, it's wrong in pri
2019-03-19