A newly available kind of genetic testing, called polygenic embryo screening, promises to screen for conditions that can include cancer, obesity, autism, bipolar disorder, even celiac disease. These conditions are informed by many genetic variants and environmental factors - so companies like Orchid and Heliospect assign risk scores to each embryo for a given condition. These tests are expensive, only available through IVF, and some researchers question how these risk scores are calculated. But what would it mean culturally if more people tried to screen out some of these conditions? And how does this connect to societal ideas about whose lives are meaningful? Brittany gets into it with Vardit Ravitsky, senior lecturer at Harvard Medical School and president of the Hastings Center, a non-partisan bioethics research center, and Katie Hasson, associate director of the Center for Genetics and Society, a nonprofit public affairs organization that advocates for responsible use of genetic technology.Learn more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy
Chapter 1: What is polygenic embryo screening?
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Hello, hello. I'm Brittany Luce, and you're listening to It's Been a Minute from NPR, a show about what's going on in culture and why it doesn't happen by accident.
Brittany, there's this drive to make sure that your child is as successful as possible and a high achiever. And the way it translates to genetic selection is that we think, ooh, if we have a new tool to select the best embryo, I'm ethically obligated to do that, just like I'm ethically obligated to pay for tutoring and violin classes and gymnastics competitions.
Like if you have the means, then why not?
Exactly. Have you seen the movie Gattaca? The 1997 sleeper hit movie shows a society where every person is born through genetic selection for the best possible genes. And in the film, Ethan Hawke plays a guy who was conceived the traditional way, who steals someone else's identity to achieve his dream of becoming an astronaut because his own genes were deemed inferior.
Jerome Morrow, navigator first class, is about to embark on a one-year manned mission to Titan. A highly prestigious assignment, although for Jerome, selection was virtually guaranteed at birth. No, there is truly nothing remarkable about the progress of Jerome Morrow. Except that I am not Jerome Morrow.
The reason I'm bringing up this nearly 30-year-old movie is because of this newly available technology called polygenic embryo screening. I've been hearing some comparisons of this technology to Gattaca.
So somebody actually wrote a narrative of what society would look like if IVF plus polygenic screening becomes the norm. And it's a nightmare.
That's Vardit Ravitsky, senior lecturer at Harvard Medical School and president of the Hastings Center, a nonpartisan bioethics research center. The genetic testing we typically already use on embryos came out just a few years before Gattaca. And it usually looks for specific conditions that have really clear single gene causes, like Tay-Sachs disease, which is very painful and deadly.
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Chapter 2: What ethical considerations arise with IVF and genetic selection?
But polygenic screening, it's new and it's different. It looks at conditions that have a lot of different genetic variables, hence the name polygenic.
What they're screening for is multiple locations along the DNA where certain variants might be associated with common disease or even with traits. Really, the key here is that you're not targeting a specific disease. You're just looking for the best possible embryo overall.
Companies like Orchid and Heliospect offered a screen for conditions that can include cancer, obesity, bipolar disorder, celiac disease, and autism. The current head of the Health and Human Services Department, Robert F. Kennedy Jr., stated, "...by September we will know what has caused the autism epidemic and we'll be able to eliminate those exposures."
So this kind of research feels top of mind right now. But the causes for these conditions are not always clear. So they give each embryo risk scores based on their calculation of probability that a kid might develop these conditions. Now, we're a long way from becoming like the society in Gattaca. These tests are expensive and only available through IVF.
But I want to know, what makes these tests appealing? And what would it mean for us culturally if this kind of testing becomes more widespread? I sat down with Vardit Ravitsky, who you heard earlier. Thank you so much. And Katie Hassan, Associate Director of the Center for Genetics and Society, a nonprofit public affairs organization that advocates for responsible use of genetic technology.
Thank you for having us. Let's get into it. What is the promise for potential parents? Why might they be drawn to polygenic embryo screening and how could it be helpful?
The promise that these companies are making is that you'll be able to have a healthy baby. You can choose the best embryo, the one that is supposed to give your child the best start in life. They are screening for conditions like autism or tendency toward obesity. But for a lot of these conditions, there's not a clear understanding of genetics as a cause for that condition, right?
The relationship between variations in the genome and the symptoms or the conditions or the outcomes is complicated and not fully understood. So the promise that they could give you a specific percentage of how likely your future child would be to develop one of these conditions is something that raises a lot of skepticism.
So I see the promise for potential parents, the idea that they can have the healthiest child that is available to them with the best possible health outcomes. But from my understanding, this test mainly shows the percentages of a likelihood that a child would have a given condition or given trait.
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Chapter 3: How accurate are the predictions from polygenic screening?
Where's the line for what kind of person is considered worthy of life?
I think I'd take a step back first from trying to say exactly what is the line and look a bit more at the context, particularly the context of ableism, stigma and fear around disability in our society makes it very difficult for a lot of people to answer that question. We have a very pervasive sort of cultural context belief that says that disabled lives are less valuable than others.
You know, we have the Secretary of Health and Human Services saying people with autism destroy families, will never have jobs, will never pay taxes, right?
Can't contribute to society, basically. Yeah.
Yeah. You hear something like that. And that context of ableism makes it very hard to even talk about, you know, how we make choices about who's welcomed into the world.
And, you know, beyond ableism as a social attitude, and I totally agree with Katie, we don't have policies in place to protect families and communities so that they have real choices. I'll give you an example. When we studied prenatal technologies, I interviewed families who made decisions about whether or not to carry to term a fetus with trisomy 21 Down syndrome. Mm-hmm.
And some parents said, you know, we would have loved to welcome a child with Down syndrome. We have no issue with the disability in and of itself. But we were very concerned about who will take care of our child when we're older. And, you know, the life expectancy with Down syndrome now is into the 60s. And society does not provide the resources and the support.
And so we terminated the pregnancy not because of an ableist attitude, but rather because of a real genuine concern for the well-being of this prospective child in a society that does not provide the support. And I'm giving this as one example. I've heard this from multiple families regarding multiple conditions.
So this attitude that Katie described translates into people feeling that they don't have the support that they need. Going back to the original question of how do we draw the line, these technologies, whether we're testing embryos or fetuses or even children, They run along an ethical spectrum.
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Chapter 4: Why does the U.S. lack regulations on genetic testing?
It's the world that doesn't allow you captioning when you are hard of hearing or access to a wheelchair when you need accommodations for your mobility. And then at the very end of the spectrum, you have selecting traits. what we sometimes call in bioethics, enhancement. And polygenic screening of embryos sometimes looks at a thing called educational attainment. Hold on.
Wait. What? Educational attainment, by my definition, means going to school, attaining an education. How can they even see that?
So they look at a big population of people who graduated from top universities and those who did not. And they look at genetic variants that are associated with that. What?
It's mind-boggling because when you think about the environmental aspects of which school you go to, what kind of tutoring you got as a kid, the kind of conversations you're having at home, your exposure, it's so reliant on socioeconomic status.
Okay, my producer just let me know that not every company that offers this testing looks at educational attainment. But regardless, I imagine the kind of people that are paying for these tests, I imagine those people have lots of money. And whether they decided to do this testing or not, their child would probably be successful just simply because of the way that the world is set up.
Exactly. So let me just say this, Brittany. It doesn't mean that there's no genetic component to it.
Sure. There is some genetic contribution. But when you already have lots of money focusing more on genetics, it seems a little dubious, at least to me. Exactly. Coming up, what might happen if polygenic embryo screening becomes more widespread?
I don't think the wealthy people will end up with the superior children, right? I think the concern is more that we will double down on this belief in genetic determinism, that our genes determine everything about our chances and our outcomes in life.
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Chapter 5: What does ableism have to do with genetic testing?
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Okay, so autism is one of the conditions that, you know, they might screen for. And the prospect of being able to screen for that, it feels related to what I see as a much larger current of fear around autism in our culture. There are parents who are so afraid of autism that they will refuse to have their children vaccinated, even though there's no basis to the idea that vaccines cause autism.
And scientists and doctors, you know, will tell you that vaccination is one of the most important things you can do for a child's health to be able to protect them from preventable illness and even death. You know, as you mentioned, Katie, we've also seen Secretary of Health and Human Services, RFK Jr., claim that he's going to try to get to the bottom of the quote unquote autism epidemic.
When asked if he stands by those comments, a spokesperson for the HHS said, quote, His statements emphasize the need for increased research into environmental factors contributing to the rise in autism diagnoses, not to stigmatize individuals with autism or their families. End quote. But to me, calling it an epidemic and saying it destroys families does frame autism as undesirable.
Why is there so much fear around or focus on autism right now?
Brittany, I want to continue this line of thought that Katie started about ableism and say that not only we live in a society that really stigmatizes disability in a way that's so unjustified, I think it's also the culture of achievement and perfection.
Think about hyper-parenting and helicopter parenting and people with money investing so much in, you know, schlepping their kids from one extracurricular activity to the other. There's this drive. to make sure that your child is as successful as possible and a high achiever. And we start early on pushing our children to do more and to do it earlier.
And kids are paying a high price in terms of mental health and stress. And the way it translates to genetic selection is that we think, ooh, if we have a new tool to select the best embryo, I'm ethically obligated to do that, just like I'm ethically obligated to pay for tutoring and violin classes and gymnastics competitions. Like if you have the means, then why not? Exactly.
And so if you have a child with autism or depression or... Or just a child that has different gifts and they are a late bloomer. We see this as a social problem because we're comparing and contrasting. And it's just disturbing on a broad cultural level, way beyond genetics.
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Chapter 6: How do societal views influence decisions on embryo selection?
health and success and thriving and happiness would look like for a child, but it's one that's having a huge influence.
In what ways is the logic behind polygenic embryo testing both similar to and different from the eugenics movement?
I'm seeing this in the literature as two major distinctions that make what's happening today different from what happened 100 years ago. One is the positive negative. So positive eugenics is choosing the best children and negative is making sure some people do not reproduce. Ah, yeah. Yeah.
And I think that positive eugenics is what we're talking about now because technology has given us so many new powerful tools to select. The second distinction is between state eugenics and liberal eugenics.
Right. State eugenics are eugenic practices that are supported by the government. Liberal eugenics is kind of more on an individual level. Exactly.
This term liberal eugenics that you see everywhere today in the bioethics literature troubles me a lot. Many families make individual choices, but in the aggregate... they shape the face of society, right? If 60% of people who get a Down syndrome diagnosis during pregnancy terminate their pregnancies, they make very individual choices that are right for their families and I totally support them.
But there's also an aggregate outcome to that, which is a reduced rate of kids with Down syndrome in society and all the implications of that. Again, just as one example. So the aggregate effect of individual choices is one thing to keep in mind. People should be free to make these choices, but there are also societal level implications when we all make similar choices. That's number one.
Number two, when you say liberal eugenics, you make it sound like these choices are really free. They're well informed, you have all the evidence, and you're making a choice that is free of pressure. And that is just not the case.
We're all under pressure, under pressure to have better children, under pressure not to have a child with a condition that we then will be accused of bringing into the world. And again, I'm saying this based on stories that families tell about how they feel judged within the medical system for having a child that they could have tested for during pregnancy and they could have terminated.
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Chapter 7: What are the implications of selecting traits in embryos?
We all operate within social contexts that put a lot of pressure on us.
What are the implications for this kind of screening becoming more widespread?
Two things come to mind. One, you know, continuing this thought from before, the more that, you know, a lack of resources and the influence of ableism lead people to, you know, to screen out or to not have children with disabilities, it creates a feedback loop where then there's even fewer resources for families to to take care of children with disabilities.
Parents will feel that it's even more essential to use these tests. They have that responsibility to make sure that their child is born a certain way. I think that's one bit of it. Another implication that we talk about has to do with inequality.
The fact that these tests at the moment are only available to people with the means to afford both IVF and the additional costs of this pre-implantation genetic screening.
And often the way that that concern is phrased is that, well, only the wealthy will have access to these tests and therefore they'll be able to enhance their children and will end up with a society of, you know, enhanced and not enhanced. But I don't think the wealthy people will end up with the superior children, right?
I think the concern is more that we will double down on this belief in genetic determinism, that our genes determine everything about our chances and our outcomes in life. And all of the privileges that we already know that people with wealth and status in the U.S.
have, the way that they affect their children's success, will be reinterpreted as coming from the genes and not from the hierarchies and not from the resources that they're able to put into it. They will put this money into having children. what the company tells them and what they believe are optimized and superior children. And they will treat their children that way.
And so will their, you know, coaches and their teachers and their tutors and their future employers. And it will, you know, justify and reinforce the inequalities that we already have, but by understanding them as being biological, which then undermines any arguments for making social changes in order to improve equality in the world.
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