Proceed to Checkout: One Designer Baby

Inge Lammertink
6 min readDec 4, 2018

--

In today’s world we can know everything — from anyone’s location, your exact ETA, to the genetic mapping of the cells in your body. Companies like 23andMe and MyHeritage cleverly turned this in a commercial success, making genetic testing more accessible and common. Couples that are planning to conceive are increasingly turning to genetic tests to get all the stats on their chances of a sick child. If the technology is available, why not use it, right?

When discussing this with my parents they immediately painted a scary future of custom made ‘designer babies’: where we get to choose the eye and hair color of our unborn children — and ideally intelligence as well. Of course this is a stark difference from prenatal genetic testing when there’s not even an embryo conceived, but the technology to edit our genes does already exist.

Tinkering with the source code of life

Scientists have figured out how to reprogram a bacterial immune system called “CRISPR” to track down and edit genes in any organism, allowing us to meddle with the source code of life. CRISPR is like a pair of scissors that cuts DNA at a very specific site and repairs it, as if fixing a typo. It’s relatively simple and easily programmable and that is an amazing step forward for science. And it’s dangerous. Because using it in human embryos would start a whole other part of the ethical debate.

Just 15 years ago, scientists successfully mapped the human genome*, identifying all the genes that make us who we are. These genes determine our eye color and our blood type. They affect our height, our risk of heart disease, how strong our bones are, and even our body odor. And sometimes they cause life-threatening diseases.

The biggest plus of enhancing the genome using CRISPR technique is that it allows us to eliminate genetic diseases and reduce human suffering. Which is music to the ears of many. Who wouldn’t want to live in a genetic-disease-free world?

Gattaca and DIY gene editing

Well, quite a lot of people are worried about where this technology is going. Let’s look at the dangers:

  • It’s people, not eggplants

There’s always been backlash on innovative new technologies that emerge, but this goes further than the digital revolution, for example. This is human life we’re talking about. It will force us to completely rethink who we are and what makes us human and different from, say, genetically modified eggplants.

  • Speed of technology

The pace of this evolving technology, and technologies nowadays in general, is significantly faster than before. It took 20–25 years for the World Wide Web to fully mature into what it is today. Whereas phones took many, many decades to become publicly used. And this rapid progress of gene editing is worrisome because it doesn’t give us time as a society to wrap our heads around it and create the necessary cultural adjustment (morals, values, regulations! See my next point).

  • Regulations, please

Genome editing is only illegal in around 25 countries, and the two powerhouses in this field — the U.S. and China — have restrictions on genome editing but they don’t have laws against it. In order to avoid a Wild West of genetic experiments gone bad it is key to create clear, global regulations with one worldwide body enforcing the regulatory system.

“There are really only two things that could wipe 30 million people off of the planet: a nuclear weapon, or a biological one,” says Lawrence O. Gostin, adviser to the World Health Organization. “Somehow, the U.S. government fears and prepares for the former, but not remotely for the latter. It baffles me.” We hear ya, Lawrence.

  • Gene editing: DIY edition

The ease of use of this technique has allowed it to spread like wildfire in the scientific community. It’s also became fairly cheap over the years, giving birth to a growing group of hobbyist ‘biohackers’ that are practicing gene editing at home.

NASA scientist Josiah Zayner already has his own YouTube channel where he streams his experiments on genetic engineering. And the site Science Exchange serves as a Craigslist for DNA, a commercial ecosystem that sells cloned DNA fragments to anyone with a credit card. Most people use this for innocent purposes, but ill-intent lurs. Who knows what your neighbor might be cooking in his garage…

  • Slippery genetic slope

Which leads me to the most-used argument: aren’t we opening up Pandora’s box? If this stuff is used for reasons other than curing diseases we might find ourselves in a real-life Gattaca sooner than we think. Taking the first careful steps on the CRISPR path can quickly turn into a slippery genetic slope where we completely lose touch with nature, meddling in something we should not be touching.

  • Narrowing range of human variation

Genetic technologies can narrow the range of human variation. The world has already seen how individual choices about prenatal testing can shift whole populations: the number of girls continues to decline in India, causing a lot of societal problems, and in Iceland Down Syndrome is on the verge of being eradicated. Is there really no place in this world for the disabled or people with genetic diseases? Should we be aiming for total eradication?

  • Only for the wealthy

Despite the dramatic drop in costs of gene editing, it is still a technique mostly available to the wealthy. This can give the rich and privileged a genetic advantage which might only contribute to the growing gap between the rich and poor.

Who sets the bars?

I’m all for new, groundbreaking technologies that are pushing humanity forward. But the fuzzy ethical lines surrounding this topic are hard to ignore. It’s called genome engineering for a reason — would we want to start engineering our future children? Or as Michael Bess, historian of Science at Vanderbilt University, said: ‘We’re more complex than we can fathom, and there’s something about us that is the opposite of artificial. It’s the opposite of something made.’

Another question that should be raised in this debate is: What are the diseases to edit? Is deafness a disease? Or dwarfism? “I don’t suffer. I suffer from how society treats me”, says a 39-year old woman with dwarfism in the Netflix serie “Explained”. People don’t agree on which diseases are considered a disability versus which diseases cause unlivable conditions, and would require genetic editing — this alone can lead to a very complicated impasse.

Forget nature, what about nurture?

Having said that, people are getting way ahead of reality. No designer baby has yet been born (that we know of — there are some rumors of a CRISPR-baby born in China). And things like intelligence and height are complex traits and a combination of nature and nurture. The part that’s nature involves hundreds or even thousands of locations on the genome, interacting in ways we don’t understand. And that makes them bad targets for something like CRISPR.

In the meantime there is always the option of its less controversial brother: gene selection, where diseases caused by a single gene can be spotted and where only healthy embryos will be placed back in a woman’s womb.

Complex problems like these don’t come with simple answers through the knowledge of science. But gene editing could give us a chance to reduce massive human suffering. That’s why the stakes are so high. We’re walking on the edge of ethical borders where we’ll probably never reach a fully satisfying consensus. Who knows, maybe in 30 years we’ll be ordering a designer baby on Amazon — like a custom made pair of Nikes, choosing hair colors and bone density. Would you like that wrapped?

Want to read more about CRISPR?

*DNA is the language in which a genome is written in and the genome is the instruction manual that makes you who you are. A genome is our entire genetic blueprint, that each of us carries in almost each and every cell. Mapping it was the biggest undertaking in the history of biology.

--

--

Inge Lammertink

Growth Specialist at hyper-growth InsurTech startup | Startups, Design and Art | Now calls Tel Aviv home