This transcript has been edited for clarity.
Amid all the news that was rattling around about war and peace all over the world, a major announcement came out from a company called Orchid that didn't get much attention. I think this is one of the most important developments in how we have children; it is going to prove to be hugely ethically controversial and something we need to start thinking about, talking about, and pondering, both for ourselves as we have children and in talking to patients and families.
Orchid announced that new technology they've come up with allows them to map the genome of an embryo. This is a massive upgrade, maybe by 100 times. It used to be possible to map maybe 1% of the genetic makeup of the embryo. Now, Orchid says it's got the technology to do 99% of the embryo — so almost a complete genomic map.
Orchid was talking about using these techniques in in vitro fertilization (IVF) clinics. People could come in seeking to have a child. Let's say one of the reasons they were using IVF was to try to avoid having a child with a disease. Maybe they had a baby who died or was severely compromised by a genetic illness. They might have been trying to come in to say, let's use IVF and hopefully if the disease was sex-linked, say something like hemophilia, maybe we could avoid it.
Now, many more conditions are going to be amenable to that kind of genetic analysis. It won't take chromosome analysis. We're going right down the genes, looking for mutations that might be responsible for diseases like cystic fibrosis.
Orchid is very excited. They view it as a real advance to health, but there's certainly going to be some controversy about how bad a condition has to be in order for an IVF clinic to test for it. Parents may come in and say they don't want a child who can't hear. Certainly, among the Deaf community, there are many who would say that not hearing is not a problem. Sign language is great. Gallaudet University [the only bilingual university for deaf people] is great. Many people live happy, functional, successful lives with a condition of deafness. It doesn't rise to the level of something that has to be screened for as a fatal disease.
Other parents are going to say, look, if we make embryos and some have a marker for that and others don't, why don't we give hearing to our child? Why don't we just not get involved with the luck of the draw about what embryo is used to make a baby? That's certainly going to be very controversial.
More controversial is that people are going to start to come to that IVF clinic who are fertile. They're going to say, yes, we've had a child without the use of IVF. We're not at risk for infertility as far as we know to try and have another child — or maybe even a first child — but we want to make embryos and sort them out so we get the baby that we want.
In other words, the Orchid discovery of how to analyze all the genes in an embryo starts to open the door to eugenic considerations about trying to make babies as best as they can be. This means that not only would we start to say, we see a marker here for short stature and I'm not sure we want a child who's short, even though there's nothing disease-like about being short. We might also say, look, there's another condition: freckles. Rule those embryos out.
Maybe we'll start to find some genes that predict abilities or skills. Someone might say you'll have more acute hearing if you have a particular mutation found in that embryo, or you'll have a stronger immune system or whatever it might be. We never really got past science-fiction discussions of what to do about genetic knowledge in films like Gattaca or Star Trek II: The Wrath of Khan, where Hollywood gave us a little bit of a peek into tough ethical choices that might be made.
I thought the need to examine this would be off in the future somewhere, but it's here and it's big. I don't know what it costs. I'm not sure what IVF clinics are going to be offering this soon, but I imagine some will. I imagine some patients are going to come in and say, "We're thinking about having a child. What is a genetic disease? How bad does it have to be before we say we'd better use embryo selection using IVF as the way to reproduce?"
I think we'll eventually see some marketing by clinics that say, we're here to help you build a better baby. Forget about whether you have genetic diseases in your family that might be avoided by screening the embryos. We'll help you make the best baby you can possibly have. Use our techniques to use embryo selection. Don't create children through sex. Create them down at the clinic.
I think we have much to debate and to argue about, with differences of opinion from many groups that should be weighing in from the disability community and from people who have different skills and abilities, talking about what they do and what they're capable of doing so that people who have choices to make about reproduction get a full picture.
I'm Art Caplan at the Division of Medical Ethics at the New York University Grossman School of Medicine. Thanks for watching.
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Cite this: Building Better Babies? Ethicist Highlights Tough Choices - Medscape - Feb 15, 2024.
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