When I saw the news that He Jiankui and colleagues had been sentenced to three years in prison for the first human embryo gene editing and implantation experiments, all I could think was, “How will we look back at what they had done in 100 years?”
When the scientist described his research and revealed the births of gene edited twin girls at the International Summit on Human Genome Editing in Hong Kong in late November 2018, I stayed up into the early hours of the morning in Oakland, Calif., watching it. Afterward, I couldn’t sleep for a few days and couldn’t stop thinking about his achievement.
This was the first time a viable human embryo was edited and allowed to live past 14 days, much less the first time such an embryo was implanted and the baby brought to term.
The majority of scientists were outraged at the ethics of what had taken place, despite having very little information on what had actually occurred.
To me, no matter how abhorrent one views the research, it represents a substantial step forward in human embryo editing. Now there is a clear path forward that anyone can follow when before it had been only a dream.
He Jiankui’s work has been subjected to strong and sometimes vicious criticism. The big unknown is whether the children born from it will experience any harmful effects, though there is no evidence to lead us to suspect that they will.
Even after He’s work was made public, the U.S. did not create any laws directly outlawing human embryo editing and implantation. The only thing standing in the way of doing this is gaining FDA approval for an investigational new drug application. Current federal funding guidelines prevent the FDA from approving such experimentation, but how long will it be until that changes? Most certainly less than 100 years.
Let’s be honest, though. The FDA doesn’t need to approve these experiments as most countries in the world do not have laws against human embryo editing. A scientist and embryologist in Russia has proclaimed he is working on editing embryos for implantation — meaning that you are just a $500 plane flight from embryo editing being legal.
I imagine that the scientists, medical doctors, and biotechnologists reading this essay will almost unanimously proclaim that He Jiankui will never be viewed in a positive way. What they fail to see is that societal ethics change, especially over long time frames. When the outrage has faded with the passage of time, what is left?
As long as the children He Jiankui engineered haven’t been harmed by the experiment, he is just a scientist who forged some documents to convince medical doctors to implant gene-edited embryos. The 4-minute mile of human genetic engineering has been broken. It will happen again.
The academic establishment and federal funding regulations have made it easy to control the number of heretical scientists. We rarely if ever hear of individuals pushing the ethical and legal boundaries of science.
The rise of the biohacker is changing that.
A biohacker is a scientist who exists outside academia or an institution. By this definition, He Jiankui is a biohacker. I’m also part of this community, and helped build an organization to support it.
Such individuals have much more freedom than “traditional” scientists because scientific regulation in the U.S. is very much institutionally enforced by the universities, research organizations, or grant-giving agencies. But if you are your own institution and don’t require federal grants, who can police you? If you don’t tell anyone what you are doing, there is no way to stop you — especially since there is no government agency actively trying to stop people from editing embryos.
The level of gene-editing sophistication on a budget is increasing rapidly. People are already editing human cells using a $150 inverted microscope without negative-pressure fume hoods and CO2 incubators. The requirements of embryo injection are minimal: a microinjector, micropipette, and microscope. All of these can be purchased on eBay and assembled for a few thousand dollars. Or if you have $43,500, just buy this “IVF ready” setup on eBay. You can practice embryo injection using zebrafish or other eggs or embryos that are readily available online.
What about the gene editing part? If companies like Synthego won’t sell you the Cas9 protein, you can easily purify it and make your own guide RNA for a few hundred dollars. The hardest thing to obtain would be human embryos, but with no laws against buying and selling them, a few emails is all it would take. CNY Fertility sells donor embryos for $1,000 each, and that doesn’t even include bulk pricing. A few thousand dollars for sequencing and screening and that’s it.
You can probably have the embryo transferred to a human by a medical doctor in the U.S. if you don’t tell him or her what you’ve done, or you can do it in another country. Embryo transfer itself doesn’t require any sophisticated equipment, so maybe someone could DIY that also.
In other words, not much is stopping people from doing embryo editing and implantation. So it won’t be long until the next human embryo is edited and implanted.
In the next 100 years, thousands of edited embryos will be implanted and become children. I believe that embryo editing and implantation will someday be viewed much as how IVF is viewed today. When a human embryo being edited and implanted is no longer interesting enough for a news story, will we still view He Jiankui as a villain?
I don’t think we will. But even if we do, He Jiankui will be remembered and talked about more than any scientist of our day. Although that may seriously aggravate many scientists and bioethicists, I think he deserves that honor.
Josiah Zayner is CEO of The ODIN, a company that teaches people how to do genetic engineering in their homes.
He is a hero to me. Nelson Mandela did time. I have and held my ground. Thank you He from me
Jiankui is to biotech what Mitnick is to computer tech. What Kevin did in 1995 that landed him in prison would be considered beginner-level hacking today, but at the time it was so scary to the completely uninformed judiciary that he served 5 years. People were actually buying into the notion that he could start a war with a telephone, an idea that is now understood to be embarrassingly naive.
And so we are with biotech today, where the public, and government, perception is just as naive and fear-based as what Mitnick faced in 1995.
– Biotech is hard – none of us is going to build a plague in our garage;
– DNA is highly resilient. Sure, there are off-target effects, but there is such high redundancy in the code, and such extensive repair mechanisms, that even doing “the good stuff” is really hard;
– Consider the ultimate “off-target effect”: Mendelian diseases, which are all very rare and many don’t even present until late in life – a testament to both redundancy and repair;
– Every union of sperm and ovum is an act of genetic engineering completely lacking in informed consent, without any sort of controls against unwanted outcomes, and any impaired product of that experiment (aka, a child!) could be a long-term burden on society. Should sex require more oversight?;
– And even if we are okay with random genetic experimentation by adults, since somehow “natural” – which means completely uncontrolled – gets grandfathered in, then you still have IVF to consider. That’s no longer random! I get to choose the genetics… but only randomly occurring selections are available. Is random really that much better than engineered? Who says so?
Jiankui is guilty of nothing more than forgery. Under US law, there would have to be a party damaged by that forgery for there to be a crime at all. Who is the damaged party here? Who would be suing him for malpractice? The AMA could revoke his license to practice medicine, but that is all.
Whatever your ethics are about what he did, let’s not confuse that with the law. In the US, he could not be jailed, so if you think he should be, then look carefully at your beliefs about American jurisprudence, rather than your stand on experimental procedure.
Reproductive liberty isn’t the same as rogue tampering with the human genome. You’ve also failed to address the issue of genetic mosaicism in the twins due to Dr. He’s actions and how that could mean his experiment was unsuccessful at best. Not to mention that his testing schema wasn’t comprehensive so there was no knowing what off-target mutations occurred before he recklessly decided the embryos were safe to implant. Maybe the girls are fine now, but only time will tell if there’s any lasting damage. Not something that new parents usually want to gamble with…
And then you espouse the claim that all scientists working within an established ethical framework are cronies who’re complicit in limiting the scope of true innovators like you and your mad scientist buddies who think ethical concerns are beneath you. Great reporting. Totally unbiased.
If reproduction is a liberty, what else is and what isn’t? Who decides? Under the common law, if there is no damaged party, there can be no crime. Was this a crime against science? [sic]
“only time will tell if there’s any lasting damage. Not something that new parents usually want to gamble with…”
Almost all new parents forego screening for genetic diseases, and only time tells what this new combination of alleles and ~100-odd de novo mutations will amount to.
The doctor neither sought nor received approval to conduct this research. He bypassed ethical review because he knew at best he faced a lengthy uphill battle. The manner in which he presented his results highlights that his goal was personal fame as much as scientific advancement. Regardless if it turns out no harm was done, we can’t have rogue scientist conducting unapproved or sanctioned research in secret to modify humans. It is unethical, unprofessional, and reckless. His actions broke the laws in China and he is being held accountable.
“we can’t have rogue scientist conducting unapproved or sanctioned research” – Inquisition said as much 500 years ago.
Had you been able to apply those ‘approval’ rules to the world a few billion years ago, none of us would be here today. Nature is the ultimate “rogue scientist.” You are reciting the age old fear of the unknown. Read some medical history, starting with vaccines. Without those very risky, unapproved, attempts to soften nature’s harshness we would still be plagued with plagues and famine. And speaking of famine, countries can impose rules on their citizens simply because they have the power to do so. But do not confuse power with what is right. Power is temporal, right is forever. History determines who is ultimately ‘accountable,’ not governments.
What I can’t wait to see is all the people standing in line for genetically engineered babies who won’t touch a grocery shelf item that’s not labeled ‘non-GMO’.
They’re the same people who refuse all drugs except illegal ones.
Jiankui gets what he deserves for singularly at will modifying human genetics that will have (largely unknown) effects in perpetuity. Any other rogue “scientist” doing the same (including the Mr. self-declared bio-hacker Vinod guppy) should be hotly pursued to meet the same fate. Until clear guidance and rules are established, agreed on by others in the Human Population, no such tampering should be tolerated. No rogue freaks should have a chance to alter the human race.
Should be the parents’ decision, no one else. Well-meaning committees and politburos cause tragedies every day. I can’t think of a single instance where a state took control of reproductive liberty and it ended well.
So, you consider us free to do what our overlords allow. I note that we have survived because our forebears singularly at will resisted each and every cataclysm that threatened to end their genetic lines. I reckon the cataclysm you represent – the approval of overlords before reproducing at our sole options – will be similarly survived.
I am the human race, rogue and freak though I am, no less than you, and you have no greater claim to my genome than do I. Indeed, you have no claim to my genome at all. MYOB, and leave to your betters their business.
Manufacturing human beans is really a good by itself?
Science steps are not always an advance.
Phisics or engeneers have already demonstrated as per today.
II WW could be only a case, genetic experiments in Europe last 40’s, 50’s & 60’s could be another case.
Who or what is going to sign the assurance of de right end?
UNO?, a Corporation?
No, no guarantees no work.
My son suffers factor 7 severe hemophilia . We have sequence the Gene flaw done by Italy . Can you help turn his factor 7 Gene on please. He also has factor 5 liden.
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