When does trying to have a healthier baby become eugenics-y?
Editorβs note, October 4, 8 am ET: Weβre bringing you some of our best-loved Your Mileage May Vary columns while Sigal Samuel is on parental leave. The one below was originally published last year.
This unconventional advice column offers you a unique framework for thinking through moral dilemmas. Itβs based on value pluralism: the idea that each of us has multiple values that are equally valid but that often conflict with each other. Submit your own question here.
My partner and I did IVF recently and luckily we ended up with several embryos. One of those will be implanted in me so I hopefully get pregnant. But which one?
My fertility clinic is encouraging me to do PGT-A testing, which would screen for things like Down syndrome and would also let me see the sex of each embryo so I could potentially choose whichever I want. (And to be honest, I really want a girl!) Iβm also hearing about these new companies that can test embryos for all kinds of things β like how smart the kid might be, how tall theyβll get, and whether theyβll have a lower chance of getting breast cancer, diabetes, mental illness, stuff like that.
I donβt know how to feel about any of this. On the one hand, it feels weirdly eugenics-y to do so much tinkering with embryos, and I canβt help feeling a little pressured into overmedicalizing everything with these expensive tests. But then again, if I could do something to make my baby healthier and happier, donβt I kind of have to do everything in my power? What does a parent owe their child?
Dear Expecting,
This is such an exciting βΒ and also confusing βΒ time. Youβre about to have your first kid, and that comes with all sorts of fears and insecurities and hopes and dreams. You want to do the right thing βΒ no, the best thing! β for your child. Itβs a beautiful impulse. Unfortunately, it makes it easy for companies to prey on you.
So let me walk you through what these companies can and canβt really provide. After we talk about the science, we can talk about the ethics.Β
The simpler test you mentioned, PGT-A, has been around since the 1990s. It can indeed screen for conditions like Down syndrome and let you see the sex of each embryo. Mind you, that doesnβt predict what gender your child will ultimately end up identifying with βΒ more on that soon.
The newer testing you mentioned is called polygenic testing. The conditions it screens for are complex ones, influenced by thousands of genes. Weβre talking about everything from breast cancer to depression. Some companies even offer screenings not for disease prevention, but for genetic enhancement βΒ so you can select for a taller kid or a kid with higher IQ.
Polygenic testing companies claim to predict each embryoβs risk for each condition, and the potential reduction of risk youβll get if you choose one embryo over another. As the statistical geneticist Sasha Gusev explains, itβs very, very easy to be misled by this claim. If the company claims to lower absolute risk of Type 2 diabetes by 12 percent, you might think this means, βThe chance of my kid ever developing diabetes just went down by 12 percent βΒ great!β But really what it means is that, all else equal, a kid who wouldβve developed diabetes is likely now at the high end of pre-diabetes instead, or just develops diabetes a few years later. The same holds true for other conditions, like breast cancer. Sure, if your kid is going to develop diabetes or breast cancer, youβd rather they develop it later βΒ but itβs not the bill of perfect health customers might imagine.Β Β
βTypical risk reduction estimates tend to exploit statistical assumptions to overstate their benefits and lead to confusion,β Gusev writes.
Have a question you want answered in the next Your Mileage May Vary column?
Fill out this anonymous form! Newsletter subscribers will get my column before anyone else does and their questions will be prioritized for future editions. Sign up here!
Itβs also important to note that thereβs a difference between a physical disease like cancer, which is straightforwardly and universally negative, and a complex mental health condition like depression. For one thing, polygenic scores donβt perform as well in psychiatry, as the psychologist Eric Turkheimer notes. Plus, most mental health conditions come in mild to moderate to severe forms, and itβs not clear that we should want to get rid of mild or moderate manifestations.Β
βSure, it would be nice if no one ever got depressed, but what would that actually mean?β Turkheimer writes. βPeople are going to be sad, and the most modern models of psychiatric disorders view most of them as extremes on continuous dimensions of normal behavior. I donβt think we want some kind of genetic version of Soma.β
To give a personal example: I have generalized anxiety with some obsessive tendencies. Is that a major pain in the butt sometimes? You bet. But if I could wave a magic wand and get rid of it, would I? No. In my experience, this trait is linked to another trait I deeply value: my creativity. The same thing that propels me down rabbit holes of worry also propels me down rabbit holes of getting super curious about some topic, researching it into the wee hours of the morning, and then writing a novel or childrenβs book about it.
That brings me to one other scientific issue: pleiotropy. Itβs a fancy term for a simple truth, which is that genes can have an effect on more than one trait. When it comes to behavioral polygenic testing, we actually know very little about which genes cause what β a gene thatβs correlated with depression or anxiety may also be correlated with a bunch of other things. So, if everyone were to start selecting embryos to try to protect their kids from depression or anxiety, what would happen? We donβt know!Β
Pleiotropy is a scientific issue, but itβs also a moral issue, because in trying to protect your kid from a negative outcome, you could also be accidentally barring them from a positive one.
And thatβs just the tip of the moral iceberg.
Another issue is the potential psychological harm that can result from commodifying our kids βΒ treating them like consumer objects with selectable parts. Letβs say you use polygenic testing to try to select for high IQ. Even if the companyβs predictor is right 80 percent of the time, that means itβs wrong 20 percent of the time. What happens if itβs wrong about your kid, and they end up with a low IQ instead of a high one? How will your kid feel? Unless you hide the truth from them, theyβll know that they are not what you wanted, that they failed to live up to the vision you went out of your way to chase.
The same goes for sex selection via good old PGT-A. I know you really want a girl. But what would happen if you select for a girl, and then your child grows up and turns out to be trans? They may feel an extra sense that theyβre letting you down by not conforming to the gender expectations you had for them.
Then there are the ethical questions around unequal access. Polygenic testing isnβt cheap. (One company, Orchid, charges $2,500 per screened embryo. Test 10 embryos and thatβll cost you $25,000.) So, at least in the short term, that raises the specter of entrenching a caste system, where the gap between rich and poor expands dramatically as the rich get smarter and stronger.
Technologies tend to get cheaper over time, so maybe everyone will ultimately be able to afford polygenic testing. But that raises another problem: implicit coercion. If more and more of us make ourselves smarter and stronger, we may create a society in which everyone feels pressure to alter their childβs biology β even if they donβt want to. To refuse embryo selection would mean to put a child at a huge professional disadvantage, or to face moral condemnation for making βsuboptimalβ kids when optimization is possible. Society may no longer offer health insurance benefits or accommodations for kids with disabilities (or even non-enhanced IQ), reasoning that βit was the parentsβ choice.βΒ
Some philosophers, like Julian Savalescu, already argue that parents have a βmoral obligation to create children with the best chance of the best life.β Polygenic testing companies love that argument; Orchid founder Noor Siddiqui tells parents that βthe responsible decisionβ is to βprotect their childrenβ from disease, using language like, βWhat if you could have stopped itβ¦but chose not to?β And we generally live in a culture thatβs obsessed with optimization.Β
So itβs no wonder that you find yourself asking, βIf I could do something to make my baby healthier and happier, donβt I kind of have to do everything in my power?βΒ
Itβs a view that will be very appealing to utilitarians, who believe the right action is the action that maximizes well-being or happiness. But maximizing principles can be dangerous. If weβre laser-focused on maximizing one value, however noble it may be, that can lead us to overlook a host of other important values. Think about diversity, for example; polygenic testing could lead to a less diverse world.Β
And itβs not even clear how to maximize well-being given that each embryo will have some downsides: How would you choose between one embryo with a slightly elevated risk for schizophrenia, another with a moderately elevated risk for cancer, and a third with a high risk for Alzheimerβs? Youβd have to decide how to rank the importance of each condition, which would require a dizzying bit of moral math: How much weight do you put on the longevity associated with each condition, how much on patient-reported quality of life for each condition, and how much on your own ability to cope with each βΒ and societyβs ability (which will change over the years)? Plus, even if the screening does end up optimizing life for your individual child, it could have negative effects on the population level, for the reasons we covered above.
As the Nobel laureate Herbert Simon pointed out, many problems contain way more variables and way too much uncertainty for maximizing along a single axis to be feasible or even desirable. So it often makes sense to just go with an option thatβs βgood enough.β He coined the term βsatisficingβ β a portmanteau of βsatisfyingβ and βsufficingβ β to describe opting for this good enough choice.
What would satisficing look like in the context of embryos? If thereβs a very serious condition that runs in your family βΒ like Tay-Sachs or the BRCA mutation that markedly increases cancer risk β then I do think thereβs a strong case for screening for that. These conditions are debilitating and can lead to early death. Nobody wants them. Genetic testing that lets us prevent them is an awesome gift.Β
Then there are conditions that can include suffering, like autism, but can also be very compatible with a happy life. Mental health conditions in particular are heavily socially constructed βΒ a lot of the associated suffering comes about because society constructs a certain biological reality as a problem and doesnβt support the people who have it. In these cases, if you want to give your child a βgood enoughβ or even βoptimizedβ life, remember that you donβt have to achieve that by biological means; working to change the social environment can be just as important, and it doesnβt carry the societal risks associated with polygenic testing.Β
Ultimately, when considering what counts as a βgood enoughβ life, each parent will draw the line in a slightly different place. And thereβs a part of that that canβt be boiled down to objective facts about disease, because this is also about how well-resourced the parent feels βΒ emotionally, socially, and financially βΒ to deal with a certain condition. What feels manageable to one parent may feel crushingly hard to another.Β
So, I canβt tell you exactly which screenings to do and which to forgo. What I do want to tell you is to resist being bullied or shamed by others, especially those with a profit incentive to push you in a certain direction.
As the epidemiologist Abby Lippman has noted, genetic testing is supposed to offer parents more choice, but it too often has the opposite effect. When someone like Orchidβs Siddiqui says about a disease, βWhat if you could have stopped itβ¦but chose not to?βΒ βΒ well, that language preys on parentsβ worst fears and insecurities.Β It holds parents hostage while pretending to be giving them more autonomy.Β
You are nobodyβs hostage. You are a moral agent free to look at the many different relevant factors, weigh them all in the balance, and then make the choice that works well enough for your family.Β Β Β
Bonus: What Iβm reading
- Silicon Valley is obsessed with IQ, so itβs no surprise that tech execs there are using polygenic testing in hopes of creating supersmart babies. This article shows the kind of mental pretzels customers get into when trying to figure out whether to select the embryo with the highest predicted IQ or that with the lowest risk of disorders. One couple asks: βHow much additional risk of ADHD cancels out against 10 extra IQ points?β
- Rereading βThe Last Children of Down Syndrome,β Sarah Zhangβs 2020 Atlantic feature on prenatal testing, it struck me that when people think βprenatal testing,β Down syndrome is often the first condition that comes to mind, even though itβs not the most severe or straightforwardly negative (itβs compatible with a happy life). Itβs just that Down syndrome was easy to test for, so we started testing for it early. I wonder if that built up the condition as a bogeyman in the expectant parentβs imagination βΒ if the fact that we could screen for it shaped the publicβs perception of Down syndrome as something that should be screened for and potentially screened out.
- One trait that many people assume we should select for is a great memory. But I highly recommend the short story βFunes the Memoriousβ by Jorge Luis Borges. Itβs a reminder that having too good a memory is not always a benefit.Β Β
Vox Members got to read this story first. Support independent journalism and get exclusive access to stories like this by becoming a Vox Member today.