CRISPR

Should We Be Worried About How Gene-Edited Kids Will Affect Future Generations?

A new international commission will consider the pros and cons of human genome editing.

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HumanGenomeEditingStepanenkoOksanaDreamstime
Stepanenko Oksana/Dreamstime

Genetic engineering researchers around the world are scrambling to devise some sort of rules to restrict "rogue gene-editing" of human embryos, possibly even imposing a moratorium on the practice. U.S. National Academy of Medicine chief Victor Dzau just announced at Davos that his institute will team up with similar groups in other countries to launch an international commission on the science and ethics of human genome-editing; the goal is to devise some rules to guide future research and clinical applications.

The efforts were spurred by the bombshell revelation last November that Chinese biotechnologist He Jiankui used CRISPR to edit the genomes of some embryos to cripple the CCR5 gene that is the gateway to HIV infections. Two of those embryos have now reportedly been born as twin girls, nicknamed Lulu and Nana—and another woman is apparently pregnant with a similarly gene-edited fetus. Using CRISPR for this purpose is called germline editing, since the children born with the edited genes will be able to pass them along to their own kids.

The ethical concerns that people have raised about He's project include the specific gene targeted for editing, whether the parents gave informed consent, whether he failed to disclose conflicts of interest, and whether he violated of Chinese laws. The embryos were edited for couples in which the male partner is HIV positive. He apparently told the parents that the editing would substantially reduce the chances of their children becoming infected if they were ever exposed to virus. Critics point out that there many other treatments now exist that can prevent and ameliorate HIV/AIDS without resorting to the novel process of gene-editing embryos. The risks of off-target deleterious mutations resulting from CRISPR editing, they argue, outweigh the benefits of gene-editing to lower the risk of HIV infection.

Another issue raised by critics is that the twins whose CCR5 receptors have been disabled may be more susceptible to other diseases such as West Nile virus, some tick-borne infections, and influenza. Fair enough, but it should be borne in mind that some 10 percent of Europeans already naturally inherit genes for disabled versions of their CCR5 receptors. Genomes—natural or engineered—will always involve tradeoffs.

In its 2017 report on human genome editing, the U.S. National Academy of Medicine set out criteria declaring that germline editing should be carried out only in the "absence of reasonable alternatives" and if they address a "serious disease." STATnews observes that criteria such as "unmet" or "serious" medical need are highly subjective. He argued that HIV/AIDS carried such stigma in China that protecting babies from ever acquiring the virus satisfied those criteria. It is worth noting that Xinhua, the official Chinese news service, reports that "HIV carriers are not allowed to have assisted reproduction." He may well have violated this law by seeking to help families in which the would-be fathers are HIV positive. In contrast with China, many fertility clinics in the U.S. offer assisted reproduction services to help HIV positive customers bear healthy children.

Setting aside He's specific project, what about using CRISPR to correct genetic diseases that take only one copy (autosomal dominant) of a defective gene that causes illnesses such as Huntington's disease, hypertrophic cardiomyopathy, neurofibromatosis, or familial hypercholesterolemia? In such cases, how much risk should fully informed parents be allowed to take on behalf of their hoped-for children?

In He's case, it is not clear how well-informed the parents were with regard to the risks and benefits of CRISPR editing. Rice University genetic engineering professor Michael Deem was an academic advisor to He and held a small stake in a couple of He's startups. Deem told the AP in November that "he was present in China when potential participants gave their consent and that he 'absolutely' thinks they were able to understand the risks." Deem's lawyers issued a statement in December denying that he had been involved with He's research.

He claimed that his project received approval from the ethics review committee at the Harmonicare Women and Children's Hospital. The privately owned hospital denied any association with He. Curiously, Chinese media don't report that there was no ethics review committee, but that the committee was not properly registered with the city's health authorities. The hospital additionally claims that He forged the signatures of review committee members. If he did, that's clearly wrong. On the other hand, given the highly negative reaction to He's research, it wouldn't be too surprising if the hospital's managers are engaged in a bit of revisionist history.

He most likely did not disclose to the hoped-to-be parents that he has filed for patents related to his genome-editing research. Certainly He should have disclosed, but at least some studies find that patients are not overly worried about researchers' financial ties.

Chinese law regarding the implantation of gene-edited embryos is a bit murky. The New York Times reports that it is "not immediately clear which specific laws Dr. He was accused of breaking." (It also quotes the Peking University health law researcher Wang Yue, who notes that "Even though the Ministry of Health has issued ethical rules, the legal responsibility is unclear and the penalties are very light.") As BioEdge suggests, He's chief problem with Chinese authorities is that he violated "China's first law of science," that is, "do not embarass the government."

Setting He aside, let's consider the question of what, if anything, is ethically wrong with parents taking advantage of technologies like CRISPR to protect their children from diseases. Don't answer that it's wrong because it's not safe: That's not the question I'm asking. If the safety issues are resolved and the technique is perfected, would there still something unethical about editing the genomes of human embryos?

Some bioethicists ominously intone that such engineering involves "unwilling and unconsenting human lives." Yet no one ever gives consent to be born, much less to be born with a specific complement of genes. With respect to consent it does not really matter ethically whether that complement is natural or engineered.

According to the United Nations' Universal Declaration on the Human Genome and Human Rights, the human genome is the common "heritage of humanity"; on that basis a U.N. bioethics commission argued for a permanent "moratorium on genome editing of the human germline." But enabling governments to decide what sort of children can and cannot be born is the very definition of eugenics. After all, what horrors are parents likely to inflict on their progeny by means of gene-editing? Less risk of disease, stronger bodies, and nimbler brains. While some parents will certainly make mistaken choices as gene-editing and assisted reproduction technologies advance, they are surely far more trustworthy guardians of the human gene pool than any set of well-intentioned bureaucrats.

How worried should the rest of us be about how gene-edited children will affect future generations? Consider three scenarios. If the edited genes are beneficial to individuals then they will be beneficial to their offspring. If the edited genes tragically turn out to be harmful to individuals, then like deleterious natural genes they will tend to be selected against in reproduction and thus not spread to many folks in future generations. But an even more likely prospect is that edited genes that turn out to be harmful will be fixed by more advanced genetic engineering before they are passed along to the next generation.

Given that, the new international commission on human genome editing should firmly reject all calls to ban human genome editing and instead focus its efforts on devising standards for deploying this technology safely.

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  1. A new international commission will consider the pros and cons of human genome editing.

    And be pretty much counter-productive at first and irrelevant in the end. The rich and powerful will find ways to ignore the commission, and eventually the process will be so automated and reliable that people will do it in their homes.

    Typical statist project, full of sound and fury, signifying nothing, and disrupting lives nevertheless as markets work around it.

    1. “Typical statist project, full of sound and fury, signifying nothing, and disrupting lives nevertheless as markets work around it.”

      (fingertips to forehead)
      I predict genome-editing tourism to those places where the distortion is least.

      1. Hey now, you gotta permit for that fortune telling?

    2. BUT AT LEAST THEY’RE DOING SOMETHING! They’re not going to just sit back and watch while this happens. They’re going to have a lot of expensive meetings and come up with some fine-sounding bullshit while this happens.

  2. Have they identified a “whiney” gene? Asking for a friend.

  3. I don’t think we should be terribly worried so long as parents are in charge of choosing what sorts of edits are done. If it’s somebody else? Very worried indeed.

    1. You’re joking right? The same parents that homeschool their children to be religious fundamentalists? No, I’m afraid only a board of experts is qualified to make these decisions.

    2. The thing to worry about, if artificial wombs become a thing, is if a country, like China perhaps, takes a Brave New World approach to humanity.

      1. You mean moreso than they already have.

    3. This is just silly. History is full of examples where parents sell their children into slavery in order to pay off their own debts.

      ‘Parents (or anyone else) in charge of choosing’ is nothing more than asserting that children are property of someone else.

      1. Hrm…

        Consider the current practice of giving scholarships that turn into loans if you don’t take a job with the company giving the scholarship.

        “We’ll give you a ‘gene modifications scholarship’ for two children. Upon graduation of the older child from a k-12 school, they will work for our company for twenty years. Failure to do so will turn the scholarship into a loan, with back-interest, payable immediately. We will decide the modifications for the older child. You are free to do whatever you want with the younger child.”

        Yeah, I can see it. But the benefits of a gene-edited baby would have to be pretty severe for that kind of witch’s bargain to be worth it.

  4. Worried? Hell no. I hope my kid turns out to be Magneto. That would be bitchin.

    1. You know Magneto is largely a product of ‘nurture’, and by ‘nurture’ I mean ‘torture killings of several generations of both ancestors and descendants’, right?

      1. Magneto was a mutant. His power was genetic. He could be raised right by loving parents and not turn out to be such an asshole.

        1. … why would you ever suggest that the problem was his parents? The problem was genocide.

  5. Yet no one ever gives consent to be born, much less to be born with a specific complement of genes.

    Until we produce the Kwisatz Haderach, we won’t know this will we?

    1. The genes must flow.

    2. Indeed. Here, have some spice.

  6. Yet no one ever gives consent to be born

    How there is still no self-abortion is beyond me.

    1. You are gonna out yourself, Nikki.

  7. Should We Be Worried About How Gene-Edited Kids Will Affect Future Generations?

    Given that, the new international commission on human genome editing should firmly reject all calls to ban human genome editing and instead focus its efforts on devising standards for deploying this technology safely.

    Worried? No. Should we be talking about it? Sure. Is ‘safely’ the only concern? I don’t think so. I think there are considerable justice, property rights, and self-determination issues to be had as well. Lest we end up federally subsidizing the completely foreseeable shitty outcomes of every the poorly-conceived germ-line editing fad that comes down the pike.

  8. should edit the age gene I’d like to be 900

    1. There is no age gene. Evolution cannot select against aging effects that start after the age of reproduction.

      1. It can if elderly members of the population have a net benefit such as taking care of children and passing on knowledge and skills.

        1. He’s not wrong about the age gene, but the rest is crudely stated BS. If every member of the species gets selected against moments after the start of the age of reproduction, mother nature wins and the species loses. Slight and even large variations in the age, window, and total number of offspring may not be easily discerned by evolution, but the notion that “I reproduced, therefore evolution doesn’t apply!” displays a distinct lack of understanding of how evolution works. Horses and donkey reproducing with each other like crazy until they die is an evolutionary dead end.

        2. That’s a good point. However, so far that is pure speculation and unlikely to be true. It’s like the argument that menopause is adaptive because grandmothers increase the survival rate of their grandchildren. Could be. Or could be women just run out of eggs due to the recent (evolutionarily speaking) increase in human life span.

      2. do we know all the genes yet?

        1. It’s a trick question. Like asking “Do we know all the roads yet?” There is no US 1001.

          By most definitions of the term gene, yes, we know them. Could a gene (or highly analogous construct) be built that extends your life but caps your years at 100? It’s not likely but not entirely impossible.

          1. Er… 900.

            1. not really a cap just random … Moshe got to 900

            2. That’s a lot of years to be locked up in the nursing home.

        2. Yes and no. The human genome has been sequenced. However, the genome is more like an alphabet in which various parts are combined in different ways to form proteins. We don’t know all the ways in which these letters of the alphabet are combined.

          1. Sort of like looking at the machine language instructions for a program written for an unknown processor architecture by the world’s worse spaghetti code programmer.

          2. sweet. gracias I know very little on genes

          3. Not so sure about what you said. I think you were saying that the various parts (the genes) are combined in different ways to form proteins. The “alphabet” is made of the nucleotides, the Genes are the words formed by those nucleotides. The genes are the blueprint for proteins. Knowing the genome does not mean that all genes have been identified, nor understood.

            However, I would like to point out that the CRISPR mechanism itself was thought to be just genetic junk in the bacterial genome only a few years ago. It turned out that the CRISPR sequences were actually the blue print for the bacterial immune system. The furthest thing from “junk”.

            So, the answer to the question “do we know all the genes yet” is almost certainly no. There are large parts of the human genome that seem to be just “junk”, i.e. those large sequences are thought to code for nothing useful. My guess is that there is still a lot to be learned about the human genome.

            1. What I meant by alphabet is exons, which are nucleotide sequences that are parts of genes and can be combined in different ways.

              Also, so we should distinguish between genes and non-coding DNA, which used to called junk DNA. Much of non-coding DNA actually codes for non-coding RNA. Our DNA is pretty complicated.

      3. There is no age ‘gene’, but there’s really little reason to think that there couldn’t be a possible genetic or other technique that could result in functionally infinite life. Biological creatures are just machines, and with maintenance a machine can live basically until no one tends and repairs it anymore. Well, assuming you can ignore the ship of Theseus problem but we’re not actually built out of the same molecules over our whole lives either.

        On a long enough time frame, who know’s what’s really possible? Consider that almost every dog you see has a common ancestor.

  9. Gene editing of the human reproductive cells have been called unethical but why? Humanity is a product of natural editing of the reproductive cells. These edits have caused small changes to the next generation. some of these changes have been positive and some have been negative. The negative change died out and the positive survived to undergo further changes until humanity is what it is today. Now if these edits from natural causes and with any intelligent guidance has resulted of producing the intelligence we have now what could humanity (or what ever it will be called then) be if there were intelligent guidance to direct the changes in the future. Ethics is only a human construct and since it is a human construct it also can be change by humans.

    So let humanity be all that it can!

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  11. Ya know, I used to think/hope we were heading towards a Gattaca type world, but without all the creepy stuff… Because engineering superior humans is obviously awesome. If the average IQ were 150, there would be almost no murder, rape, etc in the world, as low IQ people commit most crimes. We would have virtually no need for welfare. Etc.

    Now I’m afraid we’re going to get to cyborg shit before genetically engineered babies can even get out in the world in numbers. The future is gonna be fucking weird… And probably not good in many ways. Especially not if the commie globalists end up winning the day in the geopolitical struggle going on right now.

  12. Consider three scenarios. If the edited genes are beneficial to individuals then they will be beneficial to their offspring. If the edited genes tragically turn out to be harmful to individuals, then like deleterious natural genes they will tend to be selected against in reproduction and thus not spread to many folks in future generations. But an even more likely prospect is that edited genes that turn out to be harmful will be fixed by more advanced genetic engineering before they are passed along to the next generation.

    How about an actual scenario from American history? A slaveowner has a harem full of slaves he can rape at whim. Their children are also legally slaves (child of a slave mother is a slave, child of a free mother is free) who can be sold at whim – and if you add a bit of racism (one-drop rule) then you can also ensure those offspring cannot avoid the fate you were comfortable imposing on them. A whole bunch of commenters here can trace their own ancestry to one of those slaveowners – maybe thru the slave rape side, maybe thru the legal wife side.

    Now give those slaveowners access to gene-editing technology and tell me what their decisions will be. Will some of those offspring be selected for their ability to pick cotton so they can be sold at a higher price? This notion that because they are parents gives them some special wisdom and concern for their offspring is simply fucking ludicrous.

  13. Nothing to worry about. In 100 years or so, the human animal will make the leap from carbon based organisms to digital beings. Humans are grossly inefficient. As soon as technology can transfer human conscientiousness to a digital entity (no telling what they’ll call computers then), the transition will be on.

  14. Here’s a scenario that’s not among Bailey’s three: Suppose that a gene benefits heterozygotes (carriers, with one copy of the gene) but harms homozygotes (two copies of the gene, one from each parent). This is the case with the sickle-cell gene: one copy confers resistance to malaria, without producing sickle-cell disease. It’s been suggested that some of the Ashkenazi genetic diseases operate similarly: one copy of the gene boosts intelligence; two copies, and you’ve got Tay-Sachs.

    Now, suppose somebody synthesizes such a gene: heterozygotes are smarter, stronger, and more beautiful than people without the gene; homozygotes require constant expensive medical care to keep them alive, albeit in intense and unceasing pain, until they die at age 5 or 6. As long as the gene’s very rare in the population, parents will want their offspring to get a single copy. However, this will lead to its becoming more frequent, increasing the likelihood that two heterozygotes will mate and produce homozygotes. How, if at all, should the government regulate the insertion of this gene? For purposes of discussion, “eliminate government-funded health care” is not an option…

    1. It will regulate it right the fuck into a black market, like it does with everything else it regulates.

    2. Well, one option would simply be that everyone would have to have their children tested at very early stages of development, and abort them if that is the case! Or just engineer every new child from scratch…

      Once the technology gets there, it will be what most people probably will want to do anyway… Because who wants their kids to be fat, dumb, ugly, lame fucks when you can make sure they’re skinny, smart, pretty, and awesome?

      We’ll probably all be cyborgs first anyway unfortunately, so it may not matter much.

  15. How soon can I be Wolverine? That’s the important question here. No one should give any shits what “bioethicists,” a made-up job for nosy retards, think. Fuck them.

  16. No, you shouldn’t worry. It’ll be a long time before this tech is commercially available to anyone but the ludicrously rich, so as a journalist you don’t need to worry. You’ll be dead long before it’s a concern.

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