The Controversial Future of Genetic Testing

[Music] you want to see how this works [Music] I don't know how it works does it have any instructions [Music] Jamie and Brennan Cassidy were first pregnant two years ago then they found out the fetus had a severe genetic disorder during the first pregnancy we found out that the child if born would not live for very long and we chose to terminate what was that like pretty horrible it was it was really hard you know for a you know pregnancy that you wanted and for us we didn't know what what would come next time the Cassidy's got pregnant using IVF so they could use a genetic test to screen out for the disorder soon they found out they could also screen for all kinds of common diseases I have type 1 diabetes and I would do anything to not pass that burden along there's most likely a misconception out there that when people hear genetic testing I'm sure they're thinking immediately trying to make your child the next LeBron James or the next Elon Musk and that's not what this is at all I think every parent you know just wants to bring a healthy child into the world and that's what you know we were looking to do it's routine for doctors to test fetuses and embryos for cystic fibrosis as well as other diseases caused by a mutation in a single Gene but the Cassidy's used a new type of polygenic test that screens for conditions caused by multiple genes it's called pgtp and it works by collecting biopsies from embryos and then testing them for their risk of developing diseases these are the results that they give you and it just says the likelihood of Type 1 Diabetes Type 2 and then it goes down the list testicular cancer prostate cancer a couple types of melanoma hypertension and schizophrenia among other things that's a lot of potential diseases did you end up choosing the embryo with the lowest risk for type 1 diabetes we did yeah pgtp is controversial because no one knows how accurate its predictions will be so far fewer than 100 babies have been born to families who used it the technology has been on the market for three years offered by just one company genomic prediction for all of human history Earth has been sort of a lottery what you have going on is chance and sometimes fate is kind and sometimes it's cruel what we're trying to do is to give people a better start [Music] genetic testing can screen for some parents are excited about using the using them as their embryos for all kinds of things like mental health or intellectual ability Octavia and the daffodils are over here we have to go this way [Music] Collins are entrepreneurs who believe that happiness itself is genetic some people are just happier on average than other people and if we can give our daughter a better shot in terms of her mood throughout her life I I don't know I feel a moral imperative to do that like the cassidies the Collins also use genomic prediction to analyze and rank their embryo's disease risk then they downloaded the raw data and paid a DNA Analysis company called self-decode to get even more predictions like whether the embryos could be Adept at managing stress or suffer from brain fog or depression so I'm downloading the both the PDF that they gave us and I hold on I can stop this yeah so what we got from genomic prediction was just a really simple report which I actually quite like and so did you do IVF so that you could get data on your embryos yeah we already had all of our embryos that we needed to have seven kids we had 26 embryos good to go but we did a whole new round just to be able to do this because it's so much additional information interesting so I see these embryos have health scores ranging from like negative 0.96 to like 1.9 the Titan here who turned out to be the one we selected had the best score from our own internal uh like additional data calculations and genomic predictions best oh my gosh hey Titan you're number one so wait Titan is that her name Titan Invictus what's that from uh well we want powerful names and we actually rule in the family against giving any of our daughters strictly female names because data shows that uh it has a lot of negative outcomes what would you like to test for that isn't currently available on the market IQ is the big one I think that that's educational attainment Ikea earning potential like there are apologies related to these why do you think that it's not on the market polygenic risk scores four things like IQ or educational attainment it's very spicy it's spicy as soon as the company comes out it says we allow you to select for Heights or intelligence or anything that's like that seems evil or correlates with evil um then someone's gonna come out and say they're eugenicist they're Nazi whatever um and that's that really bothers us whenever the state determines these are good genes these are bad genes or any coercive group or any course of group evil always results from that but when you're talking about family level decisions like me and my wife know we have some deadly disease and I want to make sure my kid doesn't get it or I want my kid to have the highest IQ possible and good SAT scores yeah I don't think that either of those things are particularly morally questionable toasty but to many people polygenic testing is an ethical Minefield part of the problem is that IVF is already prohibitively expensive Rich patients optimizing their children's genes for Success reminds people of a dystopian Society like the 90s sci-fi film Gattaca genetics what can it mean the ability to perfect the physical and mental characteristics of every unborn child none of that's happening yet but it's because the only company on the market so far is only testing for diseases this is what we call High throughput snipp array technology high throughput snip array Technologies yeah so it's hard to say each well has this tiny microarray with probes that can detect the 800 000 positions in the genome within each embryo biopsy Nathan treff is the scientific director of genomic prediction the company is part of a multi-billion dollar fertility industry boom with investors chasing moonshots like growing sperm and egg from stem cells in a lab and artificial wombs but unlike those Technologies polygenic testing is here think of a situation right when a patient comes in and and they tell you that they have diabetes I think it's unethical not to tell them that you can actually test your embryos for risk of diabetes and I would be angry if I found out there was a test like that and that nobody told me about it what genomic prediction ever go into testing for traits Beyond diseases now at one point genomic prediction advertised polygenic testing for intellectual disability and you've since stopped marketing that why is that I think the main reason is that it really distracted from the health care benefits of the testing and the majority of patients want to reduce disease risks where is the line between disease and trade it doesn't seem as simple or as black and white no I think it's an important question and um it's I mean we can all have our own opinions right it's not really society's place to tell individuals whether they should do something one way or another when when it comes to having children where do you think this technology is going well it's only going to get better in the future it'll seem silly that we didn't use this when there's an opportunity to do it right now in the US there aren't specific regulations on polygenic testing so how far the technology goes depends completely on the private market and that worries bioethicist Laura Herscher I don't object to what general prediction does like across the board what they're offering now I also think that it's quite possible that this very limited menu of things is sort of a starter place and if they see greater acceptance and comfort level that we're going to very quickly get to a place where we may be much more uncomfortable like what there is sort of a nervousness around turning reproduction into this highly commercial Enterprise where people are looking to get their hands on a certain type of child and is that going to create a situation where people are less accepting of you know who and what they get do you think we've reached the line like we're at the point where this testing has already gone too far one thing you learn when you're in this field is the future comes very fast and once something is entrenched it's very hard to either get rid of it or change expectations or alter people's thoughts about what is and isn't appropriate so the time to discuss it is is right now you're sleeping hard now buddy the Cassidy's had their baby in April do you think about the social implications of this testing I think it's like a hammer you can build a house with a hammer or you can attack somebody with a hammer but we see the positive in it right now that it's going to allow us to have our our family I mean our society is arguing about the price of insulin and what if we could just eliminate diabetes that's the good that can come from all of it life is really hard for everyone and if you can make it a little bit easier to not have health problems then we should try to help as many people with that as we can [Music]

Channel: VICE News

Views: 179,823

Keywords: VICE News, VICE News Tonight, VICE on HBO, news, vice video, VICE on SHOWTIME, vice news 2023, dna test, gene therapy, genetic engineering, genetic testing, genetic counseling, gene editing, genetic screening, superbabies, diabetes, genetic babies, genetic baby designing, genetic baby test

Id: KthrLReQE70

Length: 11min 35sec (695 seconds)

Published: Mon May 22 2023