Genomics’ is having its broadband moment
The world’s most underrated tech
In today’s Diary:
The most underrated tech in the world
A thorny and emotionally charged issue
Generational health beats generational wealth
Would you press a button to raise your kid’s IQ?
The one-minute gene edit
Dear Rational Optimist,
When our third child was nine days old he ended up in the hospital with a respiratory virus.
George was gasping for air and had to be put on oxygen and a feeding tube. For a few days, we didn’t know if he would make it. It was the most distressing week of my life.
Thankfully, George is now a happy and healthy 6 month-old. But you never forget that helpless parental feeling, which came back to me when I read my friend and ROS co-founder Matt Ridley’s story about Baby KJ.
KJ was born with a one-in-a-million genetic disorder that’s typically a death sentence. Doctors offered his parents "comfort care," a way of suggesting they prepare to let him go.
Instead, he became the first human to receive a personalized gene-editing treatment to fix the typo in his DNA. Good news: Baby KJ was released from the hospital last month!
We’ve been hearing about gene editing – aka the CRISPR revolution – for years. Now it’s on our doorstep.
In addition to gene editing, scientists are rolling out new tech allowing parents to screen for serious diseases before their child is born. This is where the conversation gets controversial. Sceptics fling around claims of "designer babies" and “playing God.”
Today we’re getting ahead of the curve by talking about what will soon be one of the thorniest and most emotionally charged issues of our time.
“The promise of the Human Genome Project has finally arrived."
That’s what Kian Sadeghi, founder of Nucleus Genomics told me.
The Human Genome Project was completed in 2003. It took 13 years and cost nearly $3 billion to read the DNA of one person.
Today, Nucleus can do it for $400!
Rational Optimists know innovation drives down costs. The cost to sequence a human genome has plunged a million-fold in the past 25 years. It’s turned a monumental scientific undertaking into a kit you can order online.
Like the internet before it, genomics is having its broadband moment. Just like widespread fast internet led to Netflix and Uber, innovators are now building a new wave of genomic "apps."
Nucleus Genomics and Orchid Health are two standouts. Both were started by founders on deeply personal missions:
Kian’s journey began after a young cousin died from what doctors suspected was a genetic heart disorder.
The mother of Orchid Health founder Noor Siddiqui started going blind from a degenerative eye condition caused by a single "typo" in her DNA.
Through Nucleus and Orchid, they’re attempting to rewrite tragic family stories.
Nucleus just launched Embryo, a new screening platform which lets parents pursuing IVF rank and select embryos based on a complete genomic profile. It assesses the genetic risk of developing over 900 diseases and dozens of traits, and spits out a "risk profile" for each embryo.
For $5,999 (per 20 embryos) Nucleus gives parents a detailed report card that allows them to select the embryo with the best possible odds of a long and healthy life.
Nucleus is first and foremost a data analysis platform. It leaves the genetic testing to its partner Genomic Prediction, which has already analyzed 120,000 embryos. Parents can upload this data to Nucleus where its algorithms work their magic.
How is this different than 23andMe, which recently filed for bankruptcy?
To start, 23andMe only mapped 0.1% of your DNA, too little to provide valuable insights. Nucleus sequences 100% of your genome. Not to mention it’s analyzing embryos and not adults, which is basically sorcery.
Extropic founder Gill Verdon told me embryo selection is the most underrated tech in the world in our recent talk. I agree.
Notably…
Nucleus’ founder Kian is only 25 years old.
People complain about “the kids these days.” I often have the privilege of chatting with young founders changing the world, and I think these kids are alright.
Orchid founder Noor Siddiqui compares current embryo screening to scanning the table of contents of a book. Orchid can “proofread the whole book” and allow parents to peer into the genetic future of their kids for $2,500 per embryo.
This tech is already used in hospitals to screen adults for their probability of developing heart disease and the like. Orchid brings it to embryos.
Both Nucleus and Orchid can work before IVF even begins. A couple can submit saliva samples, and the platforms simulate the likely genomes of their future embryos. Here’s a sample report:
Rise of the superbabies?
Nucleus and Orchid aren't editing embryos, they’re reading them. But this raises thorny questions about where to draw the line between health and enhancement.
I talked about this with my wife. Our clear line in the sand: using this tech to guard against devastating diseases is a moral imperative. Using it to select for traits like height or hair colour feels like a step too far.
Most Americans agree, as does Noor. She draws a clear moral line between screening for serious health conditions vs. traits like IQ.
I’m surprised by how quickly people accuse Nucleus and Orchid of “playing God.” We already use a poor man’s version of this tech today.
Parents have been screening for conditions like Down syndrome for years. Until the early 2000s, this involved inserting a giant needle through the mother’s abdomen into the womb to draw fluid (which risked triggering a miscarriage).
Thanks to incredible advances in DNA sequencing, that ordeal is now a simple blood test taken from the mother's arm. My wife had it done, and the peace of mind it provided was well worth the $400.
This new technology is simply a better tool for achieving the same ancient goal: a healthy child.
God willing, my wife and I will continue to roll the dice and have healthy kids the old-fashioned way. But Nucleus and Orchid are offering game changers for millions of hopeful parents out there who are utilizing IVF.
If you could press a button to lower your child’s odds of devastating illness, wouldn’t you?
Investors among us are familiar with the term “generational wealth.” Kian wants to create “generational health.” Imagine being the one that weeds out a terrible disease from your family tree forever. That's a legacy worth a fortune.
Now for the hard question:
Would you press a button to raise your future child’s IQ?
This is really a two part question:
Part 1: would you – you, the Rational Optimist reading this – do it?
Part 2: would it be good for society if everyone did this, keeping in mind it would only be available to people with money first?
Talk about a can of worms.
Tell me what you think in the comments. But it’s worth knowing that the partner you choose to create a baby with is 100X more influential than embryo selection could ever be.
And remember, stopping progress here would literally kill people. These concerns are valid – but imagine if they had gotten the human genome project cancelled? Baby KJ would not be alive.
We must be careful being careful.
When the debate around these technologies gets heated – and it’s already starting to – our job as Rational Optimists is to make sure people know the upside. There are already so many stories of CRISPR alleviating real human suffering, and we’re just getting started.
A toddler born almost completely blind is now learning to draw and write after a one-time gene therapy infusion in London. In the first month following treatment, Jace squinted for the first time on seeing bright sunshine streaming through the window. Imagine the joy in that room.
In a recent trial, ten out of eleven children born deaf due to a missing protein were able to hear after a therapy delivered a working copy of the gene into their inner ears.
For 12 years Kendric Cromer was a prisoner to sickle cell disease. It eroded his hip bones and prevented him from going outside in the cold.
In the first FDA-approved CRISPR-based gene edit, doctors took Kendric’s own cells, corrected the faulty gene in the lab, and infused 537 million of those fixed cells back into his body. They were dripped into his veins through an IV in about a minute. That’s the time it took to rewrite this kid’s future.
This technology will only get better. Increasingly, gene editing won’t just cure people – it will prevent more catastrophic diseases from taking hold in the first place.
Doctors have already successfully treated an unborn baby for spinal muscular atrophy (which killed her sister) by giving a gene-modifying drug to her mother during pregnancy.
To quote the original rational optimist Matt Ridley writing about CRISPR: “It reinforces my view that biotechnology, applied to medicine, represents the greatest opportunity for innovation, and the greatest hope for rational optimism in the current generation.”
Hurdles for CRISPR = cost & access
A one-time dose of the sickle cell treatment costs over $2 million.
But we know how this story goes. Innovation, if allowed to happen, drives down costs while driving up quality. The first genome sequence cost billions; now it's a few hundred bucks.
Humans have always lived at the whims of an often-cruel genetic lottery. For the first time ever we’re finding ways to beat the house.
The age of miracles is here. The power to read, write, and edit the code of life is in our hands. What we do with these new superpowers will shape the human story for generations to come.
Many of us have watched family members suffer from conditions that may soon be treatable or preventable. The pain of genetic disorders, cancer or neurodegeneration could become increasingly rare.
Remember, Rational Optimist: stories change the world. When friends or family talk about this technology, be the one who shares the stories of Kendric and Baby KJ.
Millions more stories like that are yet to be written.
Don’t forget to press, Like, Restack, and leave a comment: where do you stand on this soon to be controversial technology?
See you next Sunday.
—Stephen McBride
Stephen McBride is a co-founder of the Rational Optimist Society.
A few years ago, my friends and I started a discussion of gene editing’s impact on humanity. It was decided that it will be all about good/bad non enhanced actors’ decisions. So the same as AI use.
Irrational emotions will drive law makers to try and limit the perceived down sides. The effort will fail as the baby will be tossed with the bath water. But people with $ and interest will use editing for their offspring regardless of legality to whatever ends they desire.
"Innovation drives down costs". It does on the technological side but not it seems on the treatment side. Shrinking microprocessors drove computers down from $2500 for a very basic Atari setup in 1981 to about $500 for an exponentially more powerful computer today, even with inflation over 40 years. Hospital and pharmaceutical costs have only gone skyward though. Something goes awry when nimble small biotechs invent novel treatments and then get bought out by Big Pharma. I think that's a topic that needs to go hand in hand with the technological optimism--what scenario gives reasonable outcomes for the populace and at low cost (Medicare for All?).