CRISPR Babies: A Disaster For Scientific Ethics

CRISPR Babies: A Disaster For Scientific Ethics December 6, 2018

The CRISPR babies scandal should deeply disturb anyone who cares about science and ethical research.

At the Second International Summit on Human Genome Editing in Hong Kong in November, researcher He Jiankui announced that he had supervised the creation of two twin girls with gene-editing technology. CRISPR babies are now a reality. The MIT Technology Review article that originally leaked the news reports the optimism that He shared in anticipation of this momentous innovation:

“In this ever more competitive global pursuit of applications for gene editing, we hope to be a stand-out,” He and his team wrote in an ethics statement they submitted last year. They predicted their innovation “will surpass” the invention of in vitro fertilization, whose developer was awarded a Nobel Prize in 2010.

An article in The Atlantic, however, describes the scientific community as appalled rather than impressed:

The crispr pioneer Jennifer Doudna says she was “horrified,” NIH Director Francis Collins said the experiment was “profoundly disturbing,” and even Julian Savulescu, an ethicist who has described gene-editing research as “a moral necessity,” described He’s work as “monstrous.”

What went wrong?

Ethics, Schmethics

First and foremost, He appeared to have ignored the consensus among biologists and ethicists that great care must be taken before undertaking research into gene editing. According to the article in The Atlantic, He initially acknowledged these reservations. In a speech he delivered at a conference in Cold Spring Harbor in 2017, He recommended caution before editing the genomes of human embryos. He also interviewed bioethicists William Hurlbut and his son Benjamin, both of whom were unaware of He’s plans and advised against the genetic modification of human embryos. Despite their advice, He went ahead with his research as if merely consulting them constituted a commitment to ethical principles.

The idea of informed consent was also one that He treated in a distressingly cavalier fashion. Though he claimed that the subjects are educated people who understand the nature and risks of gene editing technology, it turns out that at least one of He’s participants had no idea what gene editing was until he read about the scandal itself. The consent forms apparently are no more informative than corporate terms and conditions waivers. Even He’s own institution wasn’t aware of his research; the Southern University of Science and Technology has characterized his experiments as a “serious violation of academic ethics and standards” and is launching an investigation into the incident.

You Accomplished What, Exactly?

Experts are at a loss to explain what He even achieved with his research. Obviously the experiment was meant to test HIV immunity by mimicking an existing mutation in CCR5, a gene the retrovirus uses to hijack the human cellular apparatus. But the way He proceeded in his research makes no sense if the objective is to test immunity to HIV:

He’s team deactivated a perfectly normal gene in an attempt to reduce the risk of a disease that neither child had—and one that can be controlled through safe-sex education or antiviral drugs. Even if you wanted to block CCR5 specifically, there are drugs out there that could do the job, many of which have been repeatedly tested in clinical trials. The rationale for using a method as extreme and untested as gene editing doesn’t hold up.

Since the mutation He created in the affected twin’s genome is unlike the naturally-occurring delta 32 mutation, no one knows what the mutation will do. Considering the complexity of genomic interaction, it will be nearly impossible to say how He’s work has influenced the HIV immunity of the variable twin.

There appear to be few ethical principles He neglected to violate in his hasty, incompetent, and irresponsible approach to this complex and serious scientific matter.

The Silence is Deafening

I’m disappointed that no other blog on Patheos Nonreligious saw fit to mention this controversy. If parents or priests act irresponsibly toward children, there’s no shortage of outrage from the skeptic scribes; so why do scientists get a free pass? Two blogs on the Catholic channel were concerned enough about the fetal-rights aspect to mention the scandal, but raised no broader objections to CRISPR technology.

CRISPR promises very plausible solutions to diseases like Zika and dengue fever, and could conceivably lead to breakthroughs in everything from the treatment of  cancer to the decrease in the prevalence of autism. However, I’ve always said there are very reasonable problems humanists should acknowledge in this kind of research, and we shouldn’t characterize skepticism about gene editing as science denial.

People are willing to admit that there are uncertainties about the outcomes of this type of research. But they don’t acknowledge the scope of the cultural change that gene editing represents. We’re redefining things like disease and deviance not as social problems, but rather as matters of responsibility for the consumer alone. A columnist at Bloomberg was shockingly forthright about the market impact of this new technology:

There’s another reason for the U.S. not to get left behind in genetic engineering — it has the potential to be a huge consumer market. Besides curing diseases and improving mental health and productivity, genetic engineering probably will be used for cosmetic purposes. Some fraction of people around the world will want to give their kids a couple extra inches of height, a bit of extra strength or a different hair color to gain an edge in the job market, the dating market or just for pure aesthetics.

Whichever companies end up providing these services to people who want them — as well as ancillary services such as consulting, screening and monitoring — will make huge amounts of money. The patents on various cutting-edge techniques will be worth many billions of dollars. If the U.S. shies away from developing genetic-engineering technology, these riches will flow to China, or to whatever other countries seize the technological edge.

Throwing ethics to the wind because of the prospect of a financial bonanza is the exact opposite of what we should be doing here. This goes to the heart of how we define progress and responsibility.

Aren’t people concerned about scientific ethics? Is there no option except to either suppress this technology or just go full speed ahead with it? How best can we explore the potential of gene editing while acknowledging its risks?

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What Are Your Thoughts?leave a comment
  • Thank you for this.

    Wow, this is a dangerous game. I don’t see any way that gene editing on humans doesn’t result in atrocity.

  • This requires a tremendous amount of review. What organization is to be responsible for setting standards of ethics and oversight for this? It could go terribly wrong quite quickly.

  • I’m not necessarily saying that gene editing should never be used. It’s just that CRISPR technology needs to get some successes under its belt before we start using it on humans.

    I think it could have been used in mosquitoes, for instance, to see if it could be effective in battling the Zika virus or dengue fever. Diseases like that cause such suffering that people in South America have every right to welcome CRISPR experimentation. Jumping right into genetically modified human babies was a major blunder.

  • Cozmo the Magician

    Why don’t you do some RESEARCH. A) He has published no peer reviewed work. B) China has said his work is unethical and possibly illegal (so much for china jumping the gun). C) There is not even evidence that ‘he’ actually did what he claimed (possible HOAX).

    When some twit makes claims that he watched Elvis shoot big foot, I do not jump the gun and talk about endagered species, nor do I start saying we need better zombie gun control.

    Even the people that think He might have done what he claimed are calling out the ethics. So I don’t see why you are bitching that the ‘atheists bloggers’ have not jumped on the wagon.

    Feel free to blog what you want about any topic, just answer one question? Who made YOU the judge and God of the atheist blogosphere?

  • Anthrotheist

    “Experts are at a loss to explain what He even achieved with his research.”
    Well, I had never heard of him before he did it, that’s for sure. I can’t help but feel like this was little more than an He appealing to his own vanity in what he saw as a milestone moment, “It doesn’t matter how little I do or how unethically I did it, my name will go down as being the first.” If anything, the fact that the change that he made was so insignificant may be evidence that He knew exactly how wrong his plan was, and he looked for the most minimal (yet superficially defensible) alteration he could make while still being able to claim that he did in fact do something.

    I really don’t know anything at all about genetics, outside of what I gleaned from my physical Anthropology course; but I still came away thinking that while we may understand many or most of the basic mechanisms of genetic behavior, we are nowhere close to being able to model the complex results of inherited and epigenetic changes (like “regulator genes” that influence the expression of other genes? and are structural genes necessarily not also regulatory?). Bottom line, until we have a lot more experience making very specific changes and tracking their results, or develop the models needed to make very accurate predictions of proposed changes, genetic editing is still playing with fire (which is a great metaphor here, since fire is both incredibly useful and potentially devastating).

  • Anthrotheist

    My sense is that Shem tends to feel like he is one of, if not the only, atheist blogger on Patheos that expresses any level of reservation or skepticism regarding scientific progress. Believing that science has clear and undeniable shortcomings, while watching self-proclaimed “skeptics” showing no reservation about anything deemed “scientific”, is sure to be frustrating.

  • Bottom line, until we have a lot more experience making very specific changes and tracking their results, or develop the models needed to make very accurate predictions of proposed changes, genetic editing is still playing with fire

    I absolutely agree. When even the CRISPR cheerleaders are up in arms, you know there’s a problem. While I wish human gene editing could have had a more auspicious premiere, it’s good to know that scientific institutions and academia take it seriously enough to object to He’s malfeasance.

  • Cozmo the Magician

    But this whole gene Crispr (sounds like a fucking Snack food) Thing is looking more and more like a Hoax. And a badly executed one at that. Same shit happened a while back when some idjit claimed to have successfully cloned a human. Every body was up in arms screaming about bio ethics and it was all 100% pure BS.

  • I’m not sure what organization would oversee this kind of research, or what kind of structure is already in place to facilitate co-operation and dialogue about the ethics and methodology involved. Does the industry self-police? Does it depend on the local regulatory agencies? These are good questions that deserve answers.

  • Anthrotheist

    I don’t really think that we are disagreeing here, but I still can’t quite discern what your points are.

    Even if this is a hoax, there is someone claiming to have done something that was profoundly unethical, and in an area where trying to push the technology too quickly is potentially very dangerous. The outcry is about the alleged activity, and it seems to me to be the appropriate response. If it does turn out to be a hoax, the worst case scenario of everyone responding is a “cry wolf” cynicism within the scientific community regarding similar future announcements.

    Whether it is a hoax or not, you say that people are already decrying the announcement, and then appear to imply that therefore there should be no reason for atheist bloggers to chime in on the subject. Does the existence of appropriate responses obviate others from any reasonable expectation to also respond? I tend to assume that part of the reason to have a blog is to have a platform for responding to current events, and every blog I can think of does so to some degree. This sort of story would almost certainly fall within the typical wheelhouse of at least one or two other non-religious bloggers on Patheos, and I assumed that Shem was trying to spotlight the lack of any response at all.

    Unwarranted credulity by skeptics in the area of science seems to be one of Shem’s pet peeves. I can’t help but feel like our conversation hasn’t been so much about this particular topic as it is about my position of agreeing with him butting heads with your position of . . . well, less agreement with him I suppose.

  • Kevin K

    Well, since this is a blog primarily about religion, I think other bloggers would be excused for not having it rank high on their list of things to be apoplectic about.

    But, as a science communicator and fan of science, I am also appalled. I don’t think there’s a single justification for this act (if it actually and really happened; I’m reserving judgment).

    Happy?

  • i still can’t get over the culinary connotations of calling them CRISPR babies.

    Tom Swift smiles in your general direction.

  • It does make them sound more appetizing.

  • well, it’s either that or eat the rich. =)

  • Daffodil

    And how do they go about testing to see is this even worked? Do they infect both twins with HIV? This is really incredible!

    Also, the phrase “unintended consequences” comes to mind.

  • Jim Jones

    How did people react when we started doing heart transplants?

    Personally, I expect we will develop the technology to 3D print zygotes in the not too far distant future.

    Customized according to the users’ demands.

  • Jim Jones

    It implies wrapping them in bacon.

  • Jim Jones

    Soylent Green. It’s a degree or two away.

  • Jim Jones

    Come on. Who wouldn’t want an arm growing out of his forehead?

  • OV

    What do I think?

    I think this is another form of eugenics

    https://uploads.disquscdn.com/images/d0d065462aded6f2d882362f30920daf477e95d956a1d3534a4c0d9a4a4e064a.jpg

    1 Freedom From Religion
    https://ffrf.org/

    2 Americans for the Separation of Church and State
    https://www.au.org/

    3 Tri-state Freethinkers
    http://www.tristatefreethinkers.com/

  • Some guy

    Yeah, that was my first hideous thought.

  • Some guy

    Hey, here’s a thought. Why not try Crisping up HIV itself to come up with a recombinant vaccine first, or something? Not sexy enough?