CRISPR

Global Gene-Edited Baby Ban Urged

Why should an international panel of experts get to decide if you will be allowed to gene-edit your kids?

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TimeTestTubeBaby1978
Time

The American Medical Association called for a moratorium on experiments that would seek to implant a "test tube baby" into a woman in an editorial in the May 1, 1972, issue of its journal. The association asserted that the ethical implications of this and other experiments in "genetic engineering" should be thoroughly explored before the work is applied to human beings. Ethically speaking, a Harris poll just two years earlier reported that a majority of Americans believed that producing test-tube babies was "against God's will."

Subsequent to the AMA's statement, research on in vitro fertilization (IVF) essentially halted in the United States until British researchers announced the imminent birth of just such a test tube baby—Louise Joy Brown—in July, 1978. The consensus about the morality of IVF then flipped and the Gallup poll a month later reported that 60 percent of Americans approved of IVF and more than half would consider using it if they were infertile.

The first IVF baby born in the United States was Elizabeth Carr in 1981. Since then, more than 8 million babies have been born as a result of IVF and other advanced fertility treatments.

In Nature, a group of eminent researchers are now advocating a moratorium on heritable human genome editing. "We call for a global moratorium on all clinical uses of human germline editing—that is, changing heritable DNA (in sperm, eggs or embryos) to make genetically modified children," they write. "By 'global moratorium,'" they hasten to add, "we do not mean a permanent ban."

The proposed moratorium is in response to the widely condemned announcement in November by Chinese biophysicist Jiankui He of the birth of two baby girls upon whom he had applied CRISPR gene-editing when they were embryos to silence a specific gene related to HIV-infection resistance. Interestingly, other research suggests that silencing that gene would likely enhance the girls' intelligence. While the Chinese government hurried to condemn He's gene-editing, more recent reporting suggests that the government may well have known and approved of what He was up to. Since it looks like He failed to adequately inform his patients with regard to how technically premature his version of gene-editing was, and what he was hoping to achieve by using it, he should be sanctioned by the relevant authorities.

In their Nature article, the researchers suggest that a global moratorium be adopted for five years during which time an international framework be set up for considering the safety and ethical aspects of inheritable gene-editing of human embryos. Under the proposed framework, an international coordinating body would be established, the goal of which would be to foster a "broad societal consensus" on "whether to proceed with human germline editing at all, and on the appropriateness of the proposed application[s]." By broad societal consensus, the researchers do not mean unanimity or simple majority. "Societal consensus on germline editing is something that must be judged by national authorities, just as governments make political judgements about their citizens' views on other complex social issues," they write.

This call for setting up an international framework is a bit behind the times. The World Health Organization already announced a month ago the creation of a 18-member Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing.

But why does there need to be a "broad societal consensus" before would-be parents are allowed to access the benefits of gene-editing for their prospective children? There was certainly no such broad consensus before Lesley and Peter Brown decided to risk then-novel IVF treatments in order to bear their daughters Louise and Natalie.

Let's consider the concerns that the researchers suggest merit the effort of achieving a broad societal consensus. They warn:

The societal impacts of clinical germline editing could be considerable. Individuals with genetic differences or disabilities can experience stigmatization and discrimination. Parents could be put under powerful peer and marketing pressure to enhance their children. Children with edited DNA could be affected psychologically in detrimental ways. Many religious groups and others are likely to find the idea of redesigning the fundamental biology of humans morally troubling. Unequal access to the technology could increase inequality. Genetic enhancement could even divide humans into subspecies.

Moreover, the introduction of genetic modifications into future generations could have permanent and possibly harmful effects on the species. These mutations cannot be removed from the gene pool unless all carriers agree to forgo having children, or to use genetic procedures to ensure that they do not transmit the mutation to their children.

These are strawmen, but let's knock them down anyway.

Forbidding parents from taking advantage of gene-editing, thereby mandating that their children run the risks of being born disabled, is immoral.

Outlawing gene-editing will not eliminate peer pressure on parents to provide advantages to their children.

The fact that children born via IVF are psychologically and cognitively normal suggests that gene-edited ones would be, too.

Religious groups that oppose gene-editing don't have to use it to reproduce, and they should not be allowed to impose their beliefs on reproductive "sinners."

All new beneficial technologies are initially accessed unequally, but eventually become more widely available.

If two people belonging to different human subspecies fall in love, they can overcome barriers to fertility by resorting to improved assisted reproduction to bear children.

If a genetic modification proves harmful to an individual, he or she can use improved assisted reproduction to make sure that his or her progeny are free of the deleterious mutation.

Rather than resorting to international commissions to devise regulations, the United States offers a successful hands-off model for how assisted reproduction—including gene-editing of embryos—should be governed. The federal government requires laboratories engaged in assisted reproduction to be certified by organizations such as the American College of Pathologists and to report certain data to the Centers for Disease Control and Prevention. Otherwise, guidelines issued by private professional organizations, such as the American Society for Reproductive Medicine (ASRM), account for most governance of assisted reproduction. Regarding germline gene-editing, the ASRM has endorsed the American Society of Human Genetics statement that declares, "At this time, given the nature and number of unanswered scientific, ethical, and policy questions, it is inappropriate to perform germline gene editing that culminates in human pregnancy."

A 2018 Pew poll provides some indication of a broad societal consensus among Americans with respect to gene-editing prospective children. In that poll, 72 percent of Americans approved of gene-editing an unborn baby to treat a serious congenital disease or condition, and 60 percent approved of gene-editing to reduce a baby's risk of developing a serious disease or condition over their lifetimes. As of now, only 19 percent think gene-editing to an enhance a baby's mental or physical characteristics is appropriate. Once germline gene-editing achieves a high degree of safety and accuracy, most people will find it ethically unproblematic, just as folks did in the case of IVF 40 years ago.

Ultimately, it should be no else's concern—even the concern of an august panel of international experts—if adequately informed parents choose in the future to use safe gene-editing with goal of benefiting their prospective children.

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  1. Why should an international panel of experts get to decide if you will be allowed to gene-edit your kids?

    Because wanting out of unaccountable, distant governance is racist.

  2. “Why should an international panel of experts get to decide if you will be allowed to gene-edit your kids?”

    You can abort them dead if you like, you can load them up with hormones to pretend to change their sex. So why not have them born alive, but with four arms and one leg?

    Hey, they’re your kids, you own them.

    1. “Why should an international panel of experts get to decide if you will be allowed to gene-edit your kids?”

      Because the Morally Superior Ones of Government Almighty, who are willing to use force to impose their will, are…

      Allowed to decide for YOU, whether or not your fertilized egg cell has a soul or not.

      Entitled to decide for YOU, whether or not you must to pass on your genes for (Tay-Sachs, Progeria, Bipolar, suicidal tendencies, depression, low IQ, name your poison).

      The Morally Superior Ones will decide for YOU! You and your Dearly Beloved are NOT qualified to make decisions about your children! (Unless you prostrate yourself in front of totally “natural” processes). If you chose to sleep on a radioactive slag heap and irradiate yourself and your genes, then it is apparently “God’s will” that you should probabalistically be far more likely to have defective children.

  3. What was never truly discussed at the time IVF was coming up were the byproducts of the shotgun method used and is continued to be used to accomplish it, resulting in many embryos in cryogenic limbo. The ethics of that were presented as a fair accompli.

  4. These articles always seem to bury the lead – do “excess” embryos get killed off in these Brave New World procedures?

    Bear in mind that the justification for legal abortion is that the baby is in the mother’s womb, so allegedly the mother can kill what’s in her womb because feminism. Bizarre, but that’s what it is.

    But as for killing embryonic human beings in a laboratory – where’s the women’s-rights angle?

    I’d say that if a human being gets created in a lab, the owners of the lab should have the responsibilities of a guardian, which includes not killing the ward.

    1. And what do you propose that Government Almighty should do to punish the violators of your laws?

      I’d be OK with a per-violation fine of $1.23 or so, per fertilized egg, just to make my point as a SLIGHTLY morally superior human, who treasurers human life… In my own eyes, of course, with me and my self esteem…

      What is YOUR proposed punishment?

      1. What is YOUR proposed punishment?

        $1.24!

      2. So the value of a subhuman’s life is $1.23 to sqrlsy.
        Enjoy this being thrown in your face every time you go on an infantile rant about illegal immigration, bitch

        1. Learn to read, bitch!

          $1.23 is the extent to which I am willing to go into a self-righteous hissy fit and use Government Almighty force and coercion to punish other people for doing things that I, in my moral superiority, find abhorrent to me, in this case. Let the punishment fit the crime, while at least making your point, I say. Notice that $1.23 isn’t all that much… I try to NOT be morally superior all that much, in proportion. We’re not talking the “murder” of any being who can feel pain here, if we try and use reason and the evidence of our senses. I notice that you want to punish (how heavily, by the way, anyway?) those who disrespect invisible lines in the sands at the borders (Mexico v/s Arizona, etc.)… And these are being who can and do feel pain! I am not so much into punishment in this case either…

          So do you think the non-users of fertilized egg cells should be punished, and by how much? If we’re going to have discussions, your stance (besides calling others bitches) would be nice to know!

          1. PS, if HOW MUCH I WANT TO PUNISH YOU = HOW MUCH I TREASURE YOU (or your offspring, friends, relatives, etc., keeping in mind that money is fungible), then I propose that you should be fined $154,986,235.93!!! (For not having implanted all of your fertilized egg cells, crossing a border w/o proper papers, name your sin, I am game for punishing you if that’s what you want).

            I REALLY respect and treasure you, Dude!!!!

  5. Any government capable of vaccinating the entirety of its populace by mandate is capable of engineering the immunity into unborn children genetically by mandate. Or forbidding it.

    1. You want autism for children, don’t you.

      1. Where else would libertarians come from?

        1. LIBERTOPIA AWAITS!

  6. But what will protect us from the Bailey super babies who decide to enslave us?

  7. Just to play Devil’s Advocate for a moment… And I honestly do NOT know what I really think about the issues raised here…

    “If two people belonging to different human subspecies fall in love, they can overcome barriers to fertility by resorting to improved assisted reproduction to bear children” … (From the article above).

    I fell in love with a chimp!!! (Gorilla, goat, rat, you name it). Maybe even I fell in love with the genes in the bones of a Denisovan fossil…

    Who are YOU to deny me and my (chimp, gorilla, goat, rat) of my / our rights to access gene-tech to have a hybrid baby?!?!?

    And then socialism will need to “pony up” to support our offspring if need be?

    1. I thought this was all settled with human/vulcan relationships.

  8. So, what about GMO labeling?

    1. If’n ye want yer GMO labeling, I’m hippagroovalistic with it, OK, yeah…

      GMO humans should be bar-code-tattooed!!!

      But when ye implement that… Me as a Devout Christian… Me also wants ALL foods that have been LOOKED AT by NON-Christians, to be labeled as such!!!! (It’s my RIGHT to be fully informed!!!!)

    2. There will come a time when GMO humans will rail against GMO food.

  9. I saw that Nature article and just about barfed. They have long since ceased to be objective about science. There’s not a single political aspect they aren’t happy to jump into, blind as a bat.

  10. Why should an international panel of experts get to decide if you will be allowed to gene-edit your kids?

    Duh, because they’re experts. Experts are much more qualified to run your life than you are, and if you question that assertion it just proves you’re a moron unfit to run your own life.

  11. In “The Making of the Atomic Bomb” (Richard Rhodes), Oppenheimer is asked to serve on a committee which considers whether there are alternatives to the use of the weapons (none that they can see) and possible target (which they recommend by characteristics, rather than name), Oppie having the humility to point out that they are physicists, and have no particular expertise in setting policy.
    It’s a shame these folks haven’t read the book nor do they have Oppie’s intelligence.

    1. In my experience, the really smart people realize how damn much they don’t know nor will ever be able to learn.

      It’s the middling dimwits who, once they have a degree or two, plus some knowledge in some particular field, get to thinking they not only know everything worth knowing, but?and this is infinitely worse?they are equipped to make decisions for other folks.

      Unfortunately, it’s always the latter group who run for office, get involved in policy, and generally make life unpleasant for everyone else.

      1. +^+^+^+^ Whoa Dude + a billion!!!!!

  12. If one country allows it, then it grow and spread. It will give people an advantage. If anyone is getting that advantage then everyone will want it for their kids.

    1. It’s like that Outer Limits episode.

  13. Why should an international panel of experts get to decide these things? It’s simple: they shouldn’t. Nobody gets to decide what’s best for anyone other than themselves. I don’t care what degrees you have or what panels you’ve sat on. You do you and let others do the same. It’s really that simple.

  14. Man (humanity) evolved from lower animal so what is wrong that a scientist aided that evolution. Who knows what improvements could be caused by these scientists. Improvements like disease and improved mental ability and physical ability.

  15. How do we distinguish between genetically engineering a child and child abuse?

    1. ^^ This

      If we are going to say no expert gets to say what is reckless genetic engineering, then we should say that no expert gets to say what is child abuse.

      Consider that for a moment.

      I can only reconcile the libertarian moral case for how we treat children if we accept that the parent is a guardian of that child’s rights. As a guardian, that parent has certain moral obligations to “do right by” that kid. For example, a parent who raised kids only to be organ donors, would be morally reprehensible. They hold the child’s interests in trust and by farming out their organs, they are not serving that child’s interests.

      At some point you have to develop a framework for what constitutes moral and ethical guardianship. We can argue about who gets to set that framework, but it has to be done. I would think that one basic rule is that the guardian be expected not to submit their ward to risky, scientifically unproven medical procedures.

      1. And if I as a parent want my clearly disease-causing genes to NOT be passed on, and I “submit my ward to risky, scientifically unproven medical procedures” in your Most Esteemed Expert opinion, then by HOW MUCH do you want Government Almighty force to be used to punish me?

        If I or my Dearly Beloved return from overseas, impregnated by the results of such supposedly horrible tinkering, implanted in a land where freedom is more accessible than in the USA, do you want Government Almighty to forcibly inspect us and abort any “monster babies” that are discovered?

        These are the bottom-line questions that people like you need to answer for us all!

        1. Yes those are questions that need to be answered. I at least am willing to answer them within a framework of ethical guidelines. And, btw, I don’t see how a government is necessary in this any more than there needs (or doesn’t need) to be a government to enforce any violation of the NAP. If you can foresee a system that enforces the NAP without government almighty, then you can foresee a system that guarantees the interests of the child without the NAP. It could be accreditation boards that hold sway over the certification of doctors. It could be bounty hunters, I don’t really care for this discussion.

          To answer your specific question- if you carry disease-causing genes, then the onus is first to try and experiment on yourself, not a child. Can you remove the genes first? If by some chance you are in a situation where you have a child with a genetic disease, of course it could be acceptable to perform experimental procedures on that child, assuming the risk to the child is understood. Just as it would be unacceptable to leave the child on a rock starving for days in the hopes that god fixes them, it is morally wrong to experiment on the child with a wholly unproven and risky procedure. (And I note that the kids in question here weren’t suffering a disease, they were just made resistant to another disease.)

          For the second question, I guess it depends on the system in question. I personally believe that to be over the line for government.

        2. And if I as a parent want my clearly disease-causing genes to NOT be passed on, and I “submit my ward to risky, scientifically unproven medical procedures” in your Most Esteemed Expert opinion, then by HOW MUCH do you want Government Almighty force to be used to punish me?

          Is my government limited to punishing you for your terrible guardianship or can we get you for your knowingly acting on your subhuman genetic predispositions as well?

  16. I love this – when progressivisms collide!
    On the one hand, you have the progressive tenet of centrally planned eugenics… while the other hand, the centralized authority of experts, opposes.

  17. It’s an interesting subject when you think about it.
    Isn’t central planning and rule by experts anathema to liberty?
    Make no mistake: gene editing is absolutely central planning by experts, even if parents are the ones directing – in this case, they’re merely part of the centralized planning by experts.
    While Bubba and Eddy bring up a good points above.
    The child/embryo is being treated explicitly as property.
    So now we have elements invoking Nazism and Stalinism, abortion, and slavery… Good topic

    1. Invoking?
      Hmm, maybe should be evoking.
      Either way, it’s some kind of _voking

    2. Not being snarky here: By this logic, a prohibition on child abuse or murder is “central planning”. At the end of the day, children are wards of their parents. While you yourself might (in a libertarian society) be free to commit suicide, are you free to kill your child on the same grounds? You might be free to undertake a risky medical procedure, but are you free to do that to a child as their guardian?

      In my mind, it is wrong to give a guardian the autonomy equal to their own personal autonomy. They- the guardian- do not have the same costs to bare when making these life altering decisions. Indeed, the interests are often orthogonal. If I, as a guardian, see a future of supporting a disabled child for the rest of my life, that fact can bias me in the decisions I make for that child’s future- such that I might make a totally different decision than that child if they had full adult faculties.

      As I say above, there needs to be a framework. There are ample examples of common law where impartial parties judge the merits of a person who is so entrusted. From executives of estates, to controllers of a trust, to foster parents, there are all sorts of examples. I would agree that many in the status quo are far too conservative in judging what is acceptable for guardian to do. Nevertheless, there ought to be a limit short of “whatever the guardian chooses to do is fine”.

    3. If I as a parent have horrible genes for Bipolar and autism and Tay-Sachs and yadda-yadda, I am a horrible central-planning asshole worshipper of Government Almighty, and all is for the hive-type thinker? If I want to “fix” these obvious sources of problems and suffering?

      But If I have babies the natural way, even after sleeping on a radioactive slag heap, or imbibing artificial mutagenic compounds at my job, where I slave away and try to pay the bills… Then it’s “against God’s Will” or some crap, for me to try and side-step the bad mutations that I have accumulated?

      What planet are you from, and, do you REALLY advocate the use of Government Almighty force to impose your crazy views on others, here?

      1. I have no idea where you are getting these strawmen. But since we are trying to illustrate our opponents’ cases with hyperbole: How dare you worshipers of Government Almighty try to prevent ANY violation of the NAP?! mean sure, I don’t like the idea of harvesting children for their organs, but who are we to enforce protection of those kids natural rights? I also dislike murder, but hell, if some guy wants to murder my kids while they are off camping one day, who are we to setup a system of punnishing that guy for just living life as he sees fit?

        You are fixated on remediation, while I am merely trying to define the boundaries of what is right or wrong. Obviously once you decide what is right or wrong, you could be draconian in your enforcement, or you could be totally laissez faire. Irrespective of the enforcement, the question is whether your choices are right or wrong.

        I notice that you keep leaping to the most extreme of cases to illustrate your choice. But of course, we aren’t even seeing those extreme cases right now. Instead, we are seeing people experiment on children to give them resistance to HIV, and possibly choose the sex of the child. If a parent is a person holding their child’s interests in trust, then performing a risky procedure on that child to make them resistant to HIV is not serving their interests. (OTOH, choosing to vaccinate the child to a disease would be serving their interests, since those medical procedures are well understood to be low risk.)

        1. I do actually see the need for SOME regulation, honestly… I don’t want to see high school kids tinkering in their garage and producing a man-bear-pig because it would be “cool”. OK, then, SOME regulation…

          A few days ago Ron Bailey had an article here about the USA FDA taking 24 freaking whole years to approve GMO salmon for us to eat!!!

          So, a world-wide ban on gene-tinkering on human germ lines to fix obvious and horrible genetic diseases? It looks quite plausible that the FDA may take 40 to 60 years (2 to 3 human generations) to approve such things, then! This is no strawman here, to compare this absurdity to “natural” reproduction. I can be as mutated as I want to be (from having imbibed mutagenic chemicals or yada-yada), and give birth to babies that suffer horribly, and social convention says that no one can take away my right to reproduce. But as soon as me & my doctor want to “fix” my babies of obvious defects, then (in the minds of Luddites) I am a gene-tinkering monster! This is no strawman, but it is, on the face of it, pretty absurd…

  18. “While the Chinese government hurried to condemn He’s gene-editing, more recent reporting suggests that the government may well have known and approved of what He was up to.”

    This is so reassuring – the Chinese government probably dreams of super soldiers genetically engineered with maximum intelligence and minimum skepticism of government.

    1. Some kind of Werner von Braun gene to produce the next generation of inventors who will produce the next generation of weapons.

      1. Sleep tight, everyone!

        1. On the other hand, we do know what the Chinese government ended up doing… It is punishing the tinkerer, who DARED to try and alleviate human suffering! Their previous motives and actions? Unknown to us. OK, maybe it was a bit premature to be doing that sort of thing just yet, but does the Government Almighty (of any or every nation) need to decide everything for us? Human gene tinkering bad (or premature tinkering); outlaw it!

          Divorce bad; outlaw it! You OK with that?

          All bad things outlawed, all good things mandated. No room left for individual freedom. You OK with that?

          1. Ban everything except cheap plastic flutes and the Book of Squrls.

            1. Yeah man Amen Bro! As long as I can have my cheap plastic flutes w/o Blessings from Government Almighty and their licensed lackeys, I am a happy lackey-less lass!

              (Can ye say happy lackey-less lass, happy lackey-less lass, happy lackey-less lass, really-really fast?)

              1. Excuse me, make that a… Happy-go-lucky, plucky, cheap-plastically lackey-less lass!

  19. As always the best solution here is liberty. Leave the decisions in the hands of the individuals involved. Let their free choices be respected.

    1. Took a break from your kiddie porn, eh?

      1. Yes, I can see how advocating liberty resembles kiddie porn, now that I have dropped a butt-ton of LSD, and have lost my mind…

      2. Shoo.

  20. Assuming that property rights hold up and radical Democrats don’t go bonkers on inheritance taxes, that best bet plan for a young (early 20’s) couple planning to have three children would be to get the eggs fertilized ASAP and keep them frozen for 40 years while the DINCs work like fools to build an estate. (This is better than postponing fertilization for decades because older sperm and eggs have problems.)

    Then, when retired, it’s surrogate mother time, nannies, and boarding schools. The Victorians thought hands on palsy parenting was over-rated and they may have been right. Children don’t need another playmate. They need a role model and a rock-stable caring authority figure with real achievements to look up to. They do need love, but not constant fawning attention, and especially not to always be the center of attention.

    Hopefully as the time comes for the parents to die, the investments will be full mature and helpful family traditions engrained.

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