George Church Has a Point. Do With the Messenger What You Will, Lulu and Nana Are Here.


Author: 
Theral Timpson

When we first encounter Frankenstein in Mary Shelley’s classic, the scientist has lost all his friends, his wife, his meaning in life because of his science. Now he is frozen half to death out on the sea ice chasing his creation of “gigantic stature” toward the North Pole. It’s the only thing he knows to do. Monster and creator, they are locked in an obsessive battle of existence, creation and loss, birth and death. They both know one thing surely. They have known it all along. There is no going back.

Not actually reading the book until some years ago, I always thought that Frankenstein was the monster. In fact, Frankenstein is the name of the scientist. The author invites a parallel confusion throughout the tale between the scientist and his creation. We are constantly made to wonder who is the stranger one. The “monster” at times sounds quite human: tender, impressionable and rational.

This past week we heard of a scientist “going rogue” in Southern China editing a gene--the germline--of two actual new humans, or as we science journalists so bluntly put it, creating “the world’s first CRISPRed babies.” Yet the way he went about it has led us all to condemn the scientist as stranger than the science. His rebellion has allowed us to hide our fear of this fantastic and utterly terrifying technology behind our outrage.

A few days on, are we still in denial?

There’s no question that He Jiankui has done some improper medicine and some questionable science with some pretty good technology. I say improper medicine, but not ineffective medicine because if it didn't work (think of stem cell clinics in Mexico) then there wouldn't be much reaction. It's precisely because we think it worked that we are so afraid. And the reaction from around the genomics community has been swift: a combination of bewilderment, shock, rage, condemnation and wonder since we read Antonio Regalado's piece in Tech Review on Sunday. “Wait a minute . . this is not what it was supposed to look like.” Even though it's not what we might have envisioned, it is the headline for which we were all waiting. We might want to attack the messenger, but the message is still here.

It certainly was surreal as we watched He Jiankui announce this biggest of all medical breakthroughs from a Youtube video. Breaking with standard ethical protocols, he seemed to be making it up as he went along. An app would have done a better informed consent. "Families need this technology," he argued directly like a populist politician might on Twitter, and he was “willing to take the criticism for them.”

Was he so young and naive that he did not know it would be more than just criticism? Did he not know he would lose everything, his life as he knew it? Or will he?

It became even stranger as we saw him on center stage at the International Summit on Human Genome Editing in Hong Kong led by the Nobel laureate, David Baltimore. There He Jiankui sat, defiant, his name tag dangling, a debilitating constant sniff betraying his fear: the modern Frankenstein facing the flash of a thousand cameras.

Maybe I had been right all those years. Frankenstein was indeed the monster after all. This young man had been created by the peers who now sat around him in judgement, questioning his every word, his every move. This was the trial of He Jiankui. He had become the creation, the monster. Did they know he was theirs?

What will the modern world do with the monster today?

After He Jiankui's personal appeal and before the inquisition, the Nobel laureate stood, the leader, the arbiter, looking at the floor--before anyone asked their questions--with his words of judgement, reflecting what the whole world felt: horror. “Irresponsible.”

Condemned.

"I feel strangely satisfied," tweeted Antonio Regalado.

“It’s dangerous, unethical, and represents a perilous new moment in human history,” said O. Carter Snead, a former presidential adviser on bioethics.

The full title of Mary Shelley’s book is Frankenstein, or The Modern Prometheus.

Prometheus was a trickster who went against the authority of the gods to give fire to humans. For this the Gods sentenced him to eternal torment. He was bound to a rock and pecked each day by a giant vulture who fed on his liver which was eaten only to grow back each day and eaten again.

Poor Jiankui.

His work is "justified,” says George Church of Harvard. “The genie is out of the bottle now.”

Promotheus was also remembered for his intelligence and for championing mankind.

He Jiankui has held fire, and there is something about fire, there is something about technology which burns through the hands of its creators. It must be controlled to be of use because it can enflame whole villages. Exhibit A: Facebook. Zuckerberg was not similarly condemned or shut down after his trial for what many are calling a humanitarian crisis that dwarfs the gene editing of two babies. This is not the crossing of the Rubicon as we have heard this week. That was a military, a political move. There was no new technology in Caesar's hands. This is that burst, that spark of the human mind, that tinkering that led to the first IVF baby.

Right now is the time to feel the shock, the condemnation, the wonder at the strangeness. But tomorrow we have to decide what to do with this story.

“This story is getting more sci-fi every minute. Michael Crichton couldn’t have made this stuff up,” tweeted Eric Topol of the Scripps.

Then Dr. Topol sent in an OpEd to the New York Times to explain to the public, to make his case that it is too early, that it is too risky. I admire Dr. Topol for reaching out to the public as a researcher and a doctor, for swiftly getting ahead of the story. However his opinion piece (or pick any one of a number of others from the head of the NIH to the FDA) is heavy handed and risks condemning the very technology which I know he is very excited about, the potential for genomic medicine to eradicate disease and ease human suffering.

I've seen a quote floating around by one of the inventors of the CRISPR technology, Jennifer Doudna, that her greatest fear is "waking up one morning and reading about the first CRISPR baby, and having that create a public backlash where people ban or regulators shut this down."

What story will we tell our friends and family? And I have to say that none of my friends or family have known about it until I told them.

If this story is not true, "it would be a pretty bald-faced fraud,” Hank Greely of Stanford told the Atlantic. “If it is true, I’m disappointed.”

Disappointment is a kind word. A parental feeling.

What do you feel? How will you frame this to your family and friends? Is it science fiction? Is He Jiankui a Frankenstein who will forever be chasing his monster? Or is he the monster created by others? Will those others now turn on him? Should this all be shut down, or is this one small step for man, and one giant leap for mankind?

Whatever story we choose, there are now two new characters that we must add: Lulu and Nana. I hope the world will be kind to them, that they will not end up lonely, isolated, and desirous of running away to the North Pole. They are no more strange than He Jiankui, or than the scientists who tamed this bacteria and archaea based tool suite CRISPR/Cas9, no more strange than you or me.

Comments

The issue here is the Chinese government strictly controls everything. Dr. He argues, there were no laws against editing human genomes, but the government will argue that since the technology is so new, the current laws surrounding cloning and other human medical treatments should be extended. The government will win. We no longer live in a society where you can use yourself or your children (or in this case, the children of others) to practice scientific exploration. There are rules and limits. Dr He will probably receive some form of punnishment.

Additionally since this is China, they will probably make sure the girls cannot reproduce by ordering them to be sterilized. And, they will be isolated their entire lives and treated like mice to monitor the progress of thepunishment. The girls will probably loose.

The Chinese government has power over individual rights greater than any country on the planet; so, Dr He ruined, not one, but three lives.

In the US, he may have personally suffered, but, the girls would've been scientific celebrities. But, China is not the US. George's premise is simply not correct, they may not be here...



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