The Chinese gene-editing experiment was an outrage. The scientific community shares blame.
S E E D E D C O N T E N T
We’re overdue for a society-wide conversation about this technology.
Chinese scientist He Jiankui is part of a team that claims to have helped make the world's first gene-edited babies. (Mark Schiefelbein/AP)
By J. Benjamin Hurlbut,
Sheila Jasanoff and Krishanu Saha
November 29
This is the experiment that was not supposed to happen.
A Chinese scientist claimed this week that he had produced the first genetically engineered babies — twin girls who have been “edited” to be resistant to HIV. He and his collaborators, who apparently include a professor at Rice University in Houston, allegedly applied the genome editing tool known as CRISPR to embryos produced through in vitro fertilization to modify a gene called CCR5. The purpose of the edit was to prevent future HIV infection, a move akin to a genetic vaccination.
Three years ago, scientists, social scientists and ethicists gathered in Washington at the National Academy of Sciences for the first international summit on human gene editing, to discuss scientific, social and ethical issues surrounding human applications of this powerful new tool. One result of the meeting was a call for a voluntary international moratorium on reproductive applications of genome editing until there was “broad societal consensus” about when making such heritable modifications is ethically acceptable.
Nothing remotely like a consensus has been reached, yet the research races ahead. Numerous labs are editing human embryos (though the researchers have not transferred the embryos into a woman’s womb, as the Chinese group claims to have done). In one high-profile paper in Nature, Shoukhrat Mitalipov, a U.S.-based scientist, described creating roughly 100 human embryos carrying a disease-causing gene to see whether he could “repair” them.
That experiment was not covered by the moratorium, because it was “basic” research — it focused not on producing a baby via transfer to a woman’s womb but on developing the laboratory techniques that reveal the potential of genetic modification. (In accordance with existing guidelines, the altered embryos were destroyed.)
Yet it made clear the professional rewards that can accrue to scientists who push the envelope by doing provocative work that earns them celebrity — and a piece of potentially commercially valuable reproductive technology.
In short, it is too easy to condemn the single experiment while letting the rest of the international scientific community off the hook.
The Chinese scientist was responding to an imperative that permeates international science: Do research that gives you a “famous first.” In moving from laboratory to reproductive clinic, the Chinese team took a step already contemplated in the work of their more internationally visible peers.
To be sure, it was a highly irresponsible step — an unnecessary and medically pointless experiment conducted upon two unwilling and unconsenting human lives. (There are far less risky ways to avoid HIV infection.) The widespread condemnation by ethics experts was warranted, yet we ought to also scrutinize the international scientific context in which it took place.
The Chinese bombshell is only the latest human reproductive innovation in which the promise of large consumer demand was enough to persuade specialists to embark on ever more ambitious projects that raced ahead of ethical considerations. In the case of in vitro fertilization, for instance, it took Britain six years from the birth of the first IVF baby, in 1978, to enact rules for how to deal with spare embryos. Technologies such as IVF and prenatal genetic diagnosis have inspired unanticipated behaviors and effects — including the creation of babies for whom no one claimed parenthood and unregulated international markets in human eggs and surrogate wombs.
In this week’s case, the benefits are at best hypothetical, whereas the risks are high — and partly unknowable. And the risks extend not only to the health and safety of the children but also to the integrity of the social relationships in which they are embedded — parent to child, medicine to patient, state to citizens and society to its members.
By the scientists’ own admission, the genetic intervention was made not primarily to treat or even prevent disease, since these children were not infected with (or even at any unusually high risk of contracting) HIV/AIDS. Rather, it was to “treat” a social disorder — stigma and discrimination in China against people living with that disease. The father of the twins is infected with HIV and, according to the researchers, hoped to ensure his children would never face the same medical and social burden.
We do not need a new Aldous Huxley to remind us that creating a genetic fix to a social problem opens a doorway to a potentially terrible new world. It’s not hard to imagine features of human diversity that people might wish to modify in the name of giving their children a better life. In the United States, having dark skin correlates with higher risk of entanglement with law enforcement, with potentially dire lifetime consequences. Some parents might feel pressure to genetically alter the skin tone of their children. Far from fixing the social problems of an unequal world, this could well lead to new lines of discrimination between the genetically “perfected” and those left behind.
What, then, should we take away from this profoundly troubling news?
First , we badly need more-explicit and more-effective rules governing research into genetic editing. It should be a given that when a norm has been violated or a rule broken, that doesn’t mean it’s open season for anyone who cares to follow suit. The researchers’ transgression makes it all the more urgent to affirm and codify international principles for protecting human dignity.
Second , we need more than a moratorium that controls when germline editing moves into reproductive medicine, but a process of genuine deliberation on whether it should move in this direction. Remarkably, the leadership of the Second International Summit on Genome Editing, held this week in Hong Kong, abandoned the earlier requirement for broad societal consensus before moving onto clinical applications. Its call for “translational” research designed to facilitate clinical application presumes a broad consensus on the aims of application. We believe such a consensus has not yet been reached.
Third , we should be skeptical of the claim that the ethical stakes are significantly lower in basic research than in applied research. Transferring an edited embryo into a woman’s womb is unquestionably a major, consequential step. Yet the capacity to undertake such implantation would not exist if the basic-science community had not already developed the tools and techniques that enable that step to be taken. The research projects undertaken in those pure-science laboratories, rewarded by publication in high-prestige journals, shape which applications become possible and available.
Finally , because of the momentum created by this basic research, we desperately need to support a more inclusive public debate about biotechnology and the human future. That discussion cannot and must not be left to scientists and ethicists who give basic research a pass — waiting only for the controversial (and inevitable) applications. And we should invite social scientists, politicians, patients and ordinary citizens into the debate, and the conversation must be global.
The deliberations undertaken at the Hong Kong summit were worthy and important. Yet they were organized by the self-interested few who are pushing forward the frontiers of science, not by those whose task it is to reflect on questions of the public good, let alone by people whose lives will be affected by policies articulated here.
CRISPR in general and the Chinese experiment in particular raise questions about humanity in the most basic sense — about our human identity, integrity and dignity. These matters cannot be reduced to narrow questions about the risks and benefits of particular technological interventions, nor should they be treated as abstract moral issues to be settled by philosophers. They are about the familiar yet mysterious fabric of our lives and relationships, including the ways we relate to, care for and guide our children.
The seductive promise of engineering better genes for one’s children — as if we were downloading wellness apps to a smartphone — denigrates that child and devalues the richness of humanity itself. The Chinese experiment reveals just how alluring these new technologies have become. It also reveals how overdue we are for a thorough conversation about the futures we want to embrace — and the futures we find abhorrent.
*Emphasis by CB.
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In short, it is too easy to condemn the single experiment while letting the rest of the international scientific community off the hook.
The Chinese scientist was responding to an imperative that permeates international science: Do research that gives you a “famous first.” In moving from laboratory to reproductive clinic, the Chinese team took a step already contemplated in the work of their more internationally visible peers. —from the article.
Sounds like the fault lies with the Chinese, and not the scientific community in general. Scientific agencies must follow strict guidelines, especially where human trials is concerned. How strict might depend on individual countries. So it's unfair to "blame" the entire international scientific community.
This is a world-wide problem. I wouldn't trust the Chinese any more that I'd trust Trump.
Oh dear....
Some countries might be more lax than others in regards to human trials. At least here in the US, there are strict guidelines and laws in place regarding human clinical trials.
... and almost no supervision.
Once the baby is born, who would "abort" it?
It is the Chinese that are aborting babies once they are born.
Conflating, much?
Actually, there are committees and review boards for supervision, review, and approval or denial of experiments or trials. So there is lots of supervision.
True.
I was thinking more in terms of supervision with teeth, like FAA. I agree that there would be uproar... but would a Doctor-Strangelove-geneticist actually be stopped?
This is where relativism comes into the discussion. Because in science each country (and individual scientists) can do what is right in their own eyes, in my opinion.
It appears this scientist and his team yielded to the temptation to make the record books on behalf of his country and himself!
It is interesting to me that the article you posted bears no 'year' date, but it speaks of the RECENT modification for rural dwellers. That RECENT modification took place more than 30 years ago. If you cannot find an accusatory article about China about what takes place more recently, because things are quite different these days, your comments appear to be deliberately attempting to mislead. I don't defend China for what they did more than 30 years ago, but I will defend it from a deliberate slander.
Once the Chinese Government became aware of what he did, they stopped him.
I understand this. Actually I am not finding fault with anybody involved in this. (Although, it is true my personal opinion is he should not have done this.)
My "public" position on this whole matter is: Some scientists are faced with a "dilemma" of going along with the status quo or stepping forward and making a "big call." This article points out there is internal pressure to advance and excel n the world science body (like race horses posted at many starting lines) waiting for a "Go!" signal that will not come. For some, the 'tension' is too much, I reckon.
I hope that makes sense.
That pretty much concurs with what I said. Each individual country may have their own system of scientific and peer review. But any scientist who engages in significant experiments or discoveries (positive or negative) also faces the scrutiny of scientists the world over.
If that's the case, then this scientist might face considerable scrutiny and possible backlash.
I tend to think such circumstances might be more politically driven than individually. That's not to say an individual scientist cannot "take the initiative" as it were in regards to such things.
Talented people are usually competitive. Scientist included.
The first to create a human clone will go down in history. That is incentive!
The risk is to,
Dr. "He" seems to feel the next step was justified. He checked off his list of public and government impediments and took this action. Eventually, the so-called, "ethical" firestorm will subside and "He" will be proven an esteemed scientist or a "daredevil" scientist.
The question becomes for our world: Will Dr. "He" listen to his peers ('once bitten-twice shy') or will "He" dismiss the scientific elites by choosing additional projects which I am told he has already (several more) lined up?!
Now really, did Dr. He open a door to this type of activity, or have others come near to touching on it, or more importantly, can we really trust that it won't happen in some part of the world again? Simply because some ethical body decry it?
Like our "every day routine data breaches" which are being announced, are we doomed to a delay in hearing about these matters?
Genetic manipulation is going to happen. Inevitably.
We would do better to allow it under controlled conditions, and then try to disseminate its advantages to all. Otherwise, it will just be another perk for being born with rich parents.
Like the Manhattan Project in 1942, the need existed to create a more powerful bomb. Once Germany took the concept to research and development an "arms race" was inevitable and opposing nations choice taken away from them.
How many nations are actually working on secret genetic reproductive programs? Hmm. . . .
Better than it going underground (where it likely already is now). Also, there will be unfortunate human guinea pigs of the poor variety who will be offered handsome sums of money for their 'services.'
To help end the war.
It's balance of power. The arms race has been continuous since WWII, most notable between the US and former USSR.
We know China probably is.
Any human subject must be informed as to the risks and benefits of the experiment and compensation is not unreasonable. As long as the "subject" has a choice to agree to and exit the experiment at anytime, then that is their choice.
Yes (flatly).
Indeed.
I'm afraid that I agree entirely.
"True dat"; excellent point, Gordy!
These will become times that try men and women souls, Bob. For man will discover means to redefine and "bespeckle" itself - even up to adding functional bio-technology!
In century or two, genetic engineering will be the standard. Likewise, bionic (mechanical / electronic / chemical) enhancements.
The ultra-rich are already drooling.
We proles are kinda worried......
The good news: There have always been some 'sunlighters' pouring out from the ranks of the rich. . . . There has always been a 'batman' for every 'mr. freeze' so we do not need to faint for the future. We can trust that the good will win out!
The "Do no harm," model.
I want to discuss the theory of the case: Would a "strangelove" geneticist and team be found guilty of an ethics violation everywhere in our world?
Dubious....
Can you elaborate - you have our attention.
Is the scientific community trying to create a "consensus-styled" world-governing body? Or, does this "consensus" unifying body in some countries exist already?
There are thousands of laboratories in dozens of countries doing research relevant to gene-enhancement.
Vast amounts of money are available.
I simply cannot imagine "controlling" this. (Or any of the cutting-edge "enhancement" topics.)
Not that I am aware of.
What "consensus" are you referring? As I said before, some countries might have their own methods and laws regarding experimentation from the scientific community.
That's more of an oath by medical practitioners. But that doesn't really have anything to do with what I said.
National Academy of Sciences as a governing body, for instance. Frankly, I am not sure how to phrase the question. My thinking has been others, in the know, would "inform" me on this thread!
The NAS is an organization rather than a "governing body." It is still bound to legal regulation and under the purview of the government. Legal and ethical guidelines are in place for both the NAS and individual scientists conducting experiments.
I know the NAS is a non-profit organization in the U.S., I am asking if these types of 'collectives' are looking to gain international authority/powers. I do not know enough about it. I am not afraid to as good questions, nevertheless. (Smile.)
Yes, but it is still under the purview of the law and established regulations. So there is oversight in that regard.
I don't know, but I somehow doubt it. I would think it seeks international cooperation with other scientific organizations from other countries.
Questions are to be encouraged. The question is the beginning of an answer
This is nice sharing, Gordy!
Thank you and agreed
Do you really want "the scientific community" deciding what is "moral"? Seriously?
That is not their job.
Our community leaders should be animating a debate on gene-editing. Our politicians should be codifying the conclusions of that debate in law.
Would you give the decision-making process for pollution control to Big Oil?
To be fair, I'm not sure I'd want politicians to decide what is "moral" either.
Oh, certainly not!
I suggested that they should codify the results of a debate that should be much wider.
(From the article above.)
"the conversation must be global.." Do we have any hope of fixing this? So many cultures and reasons to go it along, I 'd think. Some nations will see this as an opportunity to 'get out from under' whatever is hoping them back.
I doubt it.
There are too many risk-points. And then, too, there's the elephant in the room: ultra-rich parents who want a perfect child.
It will happen.
Yes, "pandora's box"can now be opened in the privacy of a lab (without a massive explosion).
Stop talking about her in such a crude manner, Pandora is a fine, upstanding young lady!
Bob! Long time no see...
HA!
Then who would you suggest? The "scientific community" consists of people from every country, religion, and ethnicity. The same as any other group of people. Also, the "scientific community" is probably the only group that is expert enough to foresee the intricacies of what they may run into that need addressing.
Exactly.
The "scientific community" understands the difference between proving that a new drug is safe and effective, and proving that it's more safe and effective than one already on the market.
It understands that the dose makes the poison, and that everything is made of chemicals, so "chemicals" aren't the bogeyman they're often portrayed to be.
The "scientific community" doesn't make stupid claims like "a woman who has been raped won't get pregnant, because her body has ways of shutting that whole thing down." Some of our politicians and community leaders actually believe this crap.
Keep the politicians out of it unless they have the proper scientific education to make informed decisions.
The fact is that we must end up with laws, and that means politicians.
I absolutely agree that they are incompetent to decide the content of such laws, but they must create them all the same.
To do so, they must call on experts. OMG
I will be out a good chunk of the day; please "enjoy" and share on this seed. And, take care of one another. (Smile.)
This is what is so unsatisfying about all this: Our politicians, world politicians, are 'toed-up' to the line for and against solutions to climate change. Everybody's talking about it. The world is (already) thought to be suffering or experiencing the impact of actions and inaction by many governments. But it is a real hodge-podge.
Then, this imminent country in the world president has pulled us out of the Paris Agreement as a 'model' of sorts for other world bodies to consider disbanding themselves.
How can we hope to find unification in genetic research ethics and legal laws when many countries do not trust of put confidence in each other? (For example, there is a new news story that Pakistan's Prime Minister Imran Khan is pulling his country back from agreement(s) with the U.S. Pakistan has very smart scientists who can move forward in a myriad of 'directions.')
Gene editing, like human cloning, may be a controversial topic in science and society. But the potential applications of this technique such as preventing, curing, or eliminating genetic based diseases, can potentially revolutionize medicine. It's certainly worth looking into.
So, generally you approve? I believe you are assenting to positive outcomes, but are you assenting to the negatives as well? (There is only one entrance to this sphere.)
Yes. All medical innovations, experiments, procedures, treatments, ect. started out as experiments at one point or another.
Of course there are likely to be negative outcomes, and they should be addressed and assessed as well. But I tend to think more optimistically and lean toward the positive outcomes.
So let me 'tap the drum' back to Dr. He and the alleged HIV-resistant twins:
Very tough questions... and this is a simple case!
Another 'toughie':
"When science shits
the bed, I'm the guy they call to change the sheets!"
What movie does this quote come from? (Hint: It is a movie, it opened in 2018, and it is relevant to this article.)
The movie "Rampage" Starring the "Rock"
Nowhere [You da] Man!
BINGO! BoNgO! This is not another King Kong movie.
I like Matt Damon's quote from The Martian (paraphrased) "...I'm going to have to science the shit out of this."
Very catchy!
I thought so. Good movie too. Fairly scientifically accurate too.
I have not taken time to watch The Martian (yet). Mr. Damon is an exceptionally good actor, but I thought I may miss this one due to context. Now, I will have to take it under advisement.
I would definitely recommend it. While it's scientifically plausible, there is artistic license taken as well. That said, Matt Damon carries the movie. Think Castaway (with Tom Hanks), but on Mars (with Matt Damon instead). Another good "science-based" movie along the same lines is Gravity (Sandra Bullock).
After watching repeat airing of Saving Private Ryan and Ladykillers, I did not watch Castaway. (I assumed the 'work' is all good and just missed out on it.) I did watch Ms. Bullock in Gravity!
Sometimes, I do get a bit anxious when surprised by movies where a lead actor is 'solo.' The impossibility of such circumstances, the pressing-in desolation, drives my anxiety levels in circles. So I tend to stay clear if warned ahead of time. Mentally, I just charted Castaway too!
No big deal. it does drag after awhile. Tom Hanks gave a pretty good performance though.
Perhaps it won't be so bad if you already know in advance if the lead is going solo for most of the film?
That would be I AM LEGEND with Will Smith. I was hopelessly 'lost' in the expanse of loneliness with him - until, she arrived. . . I felt better for him and her. The ending for that movie deserves a sequel (which did not come).
Oh well, I guess others are done with this gene-editing scientist and the science discussion for this article.
If I remember correctly, the theatrical release ending was quite different than the alternate book version ending.
Interesting. I have not read any of these many, books to movies. I usually see the 'note' of book titles in the openings or end credits.
99% of the time, the book is better. It's usually better when a movie follows the source material closely, with fewer artistic licenses taken. The Lord of the Rings trilogy was like that. Although, each movie seemed to veer away from the source books more and more.
That's interesting also: how the author-reader relationship can imagine 'a thing' together better than our creative arts departments can image it. Although, there is the problem of technology (which (CGI) graphics are helping to 'fix'). Still, . . . . it's getting so much better every year. (Smile.)
What is telling about this movie "RAMPAGE" is it opens with genetic-editing experimentation gone awry in space. A so-called 'neutral zone.' The 'product' dropping back to Earth in 're-entry' resistant cases. Seems anticipatory and apropos to Dr. He's real-world work in 'a faraway' place.
Is it art imitating life or life imitating art?
John Gray: I'm afraid I regard it as a certainty that, if it's not already happening that genetic sciences will be used to, from frivolous purposes like trying to produce children who are cleverer or more beautiful or smarter or who fit in to fashionable ideas of what makes a good child, I think that maybe that's not a terrible vice, but I regret it. Because I don't think the next generation should be genetically modeled on passing notions of what's best. But then you get into darker areas, where genetic science can be used to, or could be used in future, for racist purposes--to edit out certain groups, human groups, for the purpose of genetic weapons. Or even for purposes of genocide. And it's a general feature of human knowledge. I think this is one of the messages, actually, one of the lessons of the [Genesis'] story we talked about earlier on: It's a general feature of human knowledge and of human technology. And it can always be used for bad as well as good purposes
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