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Scientists Argue the US Ban on Human Gene Editing Will Leave It Behind (vice.com) 183

Alex Pearlman, reporting for Motherboard: As the biotech revolution accelerates globally, the U.S. could be getting left behind on key technological advances: namely, human genetic modification. A Congressional ban on human germline modification has "drawn new lines in the sand" on gene editing legislation, argues a paper published today in Science by Harvard law and bioethics professor I. Glenn Cohen and leading biologist Eli Adashi of Brown University. They say that without a course correction, "the United States is ceding its leadership in this arena to other nations." Germline gene modification is the act of making heritable changes to early stage human embryos or sex cells that can be passed down to the next generation, and it will be banned in the US. This is different from somatic gene editing, which is editing cells of humans that have already been born. The ban, added by the House of Representatives as a rider to the fiscal year 2016 budget, could have far-reaching implications if it continues to be annually renewed, according to the authors. It "undermines ongoing conversations on the possibility of human germline modification" and also affects "ongoing efforts by the FDA [Food and Drug Administration] to review the prevention of mitochondrial DNA diseases," including some kinds of hearing and vision impairments, among other serious illnesses that tend to develop in young children.
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Scientists Argue the US Ban on Human Gene Editing Will Leave It Behind

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  • depends on the editing
  • by Anonymous Coward

    Which scientist? Dr. Moreau, Dr. Jeckyll, or Dr. Frankenstein?

  • China's rise to #1 status will be through the next genetic technology revolution.
  • by Anonymous Coward

    Putting in place these limitations allows us to find alternative solutions, its great to fix unborn babies, but currently 100% of the human population has been born, so fixing problems in aged individuals maybe better to encourage.

    • It's intriguing how many of the opponents of the inheritable fixes that indulge in hyperbole of dangers and dismiss benefit are involved in the somatic therapies.

      It's rather obvious that they have the greatest conflict of interest. Not only do germline genetic repairs compete with their intellectual property for patients to cure, they threaten to reduce common genetic maladies as a profit center, like a communicable disease treatable with a lucrative antibiotic being eliminated would deprofit the antibi

      • by jedidiah ( 1196 )

        It's no worse than the bar for treatments generally. A promising new drug for my condition was recently withdrawn from trials because it was killing people. You either do things with rigor or you might as well be peddling Rhino horns.

        This is not unlike the inclination to act with a total lack of discipline in IT.

    • Genetically ensuring healthy babies/children could save a lot of health care resources that can then be devoted to helping older people.

  • GMOs are the worst thing to ever be unleashed on the world because it is gene-splicing done by mainly US firms but it is horrible that the US is not engaging in "unnatural" (not sperm and egg) gene-splicing of human DNA?

    Or restated as "direct manipulation of non-human DNA is worse than admiring Hitler but direct manipulation of human DNA is the best thing ever."

    • by Jzanu ( 668651 )
      Those are a lot of disconnected assumptions, none proven. Ethical implications only arise in human experimentation. Hitler's atrocities are slightly related.
    • Re: (Score:3, Insightful)

      by CountZer0 ( 60549 )

      At least among the people I know, GMOs aren't bad because of the gene manipulation itself. Instead, they are considered bad because that manipulation results in significantly higher concentrations of pesticides being used on GMO crops (as the crops are now "roundup ready" or whatever). It is these higher concentrations of pesticides that are considered dangerous, not the genetic manipulation.

      • Re: (Score:3, Insightful)

        Not all gmo crops are "roundup ready." Strawberries that are resistant to frost are just one example. Tomatoes that have a longer shelf life, GMO tomatoes have been around for 2 decades with no problems. Turns out the people you know are none too swift. Most of the food on store shelves contains gmos.
        • by Copid ( 137416 ) on Thursday August 04, 2016 @04:19PM (#52647241)
          Not to mention that while everybody freaks out over Roundup, it's pretty darned benign compared to some of the herbicides it replaced. It disrupts a biological process in plants that does not exist in humans, has low acute and chronic toxicity [crediblehulk.org] and breaks down in soil pretty well. There's a reason it's popular, and contrary to what the checker at Whole Foods might tell people, it's not because Monsanto Men in Black show up and threaten farmers who don't use it.
      • GMOs aren't bad because of the gene manipulation itself. Instead, they are considered bad because that manipulation results in significantly higher concentrations of pesticides being used on GMO crops

        No, genetic engineering is totally the reason; the goalpost has just been moved some given how indefensible and ridiculous of a reason it is. In the case you mentioned, people should ask themselves if farmers are spending extra of GE seed just so that they can spend extra of additionally unnecessary pesticides because they have no idea how to farm and need some city dweller to explain it to them, or that there is more to the story. It is the latter.

        Yes, there are crops genetically engineered to be resista

        • by jedidiah ( 1196 )

          > what do you think farmers did before these crops?

          They grew something besides high fructose corn syrup for ConAgra.

          The thing about most GMOs is that they are done for very uninteresting plants that go into foods that you really shouldn't be eating anyways. GMO crops for the most part are part of a dubious monoculture both in terms of actual biology and in terms of the consumer food supply.

          If you generally avoid "food like substances" in shiny plastic wrappers, you're probably already avoiding the vast m

      • by tlhIngan ( 30335 )

        At least among the people I know, GMOs aren't bad because of the gene manipulation itself. Instead, they are considered bad because that manipulation results in significantly higher concentrations of pesticides being used on GMO crops (as the crops are now "roundup ready" or whatever). It is these higher concentrations of pesticides that are considered dangerous, not the genetic manipulation.

        The other problem with GMOs is patents and whole IP infrastructure - it's putting food in the hands of single corpora

        • by Copid ( 137416 )
          First of all, plant IP licensing goes way back to before GMOs. Second, patents aren't permanent. Even the original Satanic Roundup Ready soybeans are off patent. Third, there are no patents on tons of varieties of seed. If a seed company decides to jack up its prices on patented seed, they'll lose business to unencumbered seed.

          The price premium on Roundup Ready corn, for example, isn't "low" now because Monsanto is being nice and lulling us all into believing they're good people. They're charging wh
      • Yeah, the term "Frankenfood" was coined because of Roundup and not to invoke irrational fears about the genetic makeup of the tomato somebody might bite into. Riiiiiight!!!

        BTW, Roundup is an herbicide. The difference between herbicide and pesticide is similar to the difference between a lion and a vegan.

        There are many aspects of GMO crops. Some is to make them Roundup resistant by splicing in genes from other plants that are naturally roundup resistant. Some are to splice in genes from plants that excrete c

        • The difference between herbicide and pesticide

          Technically speaking here, as per legal definitions, a pesticide is anything that kills an unwanted organism. An insecticide kills insects, a miticide kills mites, a rodentacide kills rodents, a fungicide kills fungi, an herbicide kills weeds, and all are technically pesticides, although in the common vernacular, pesticide and insecticide are frequently used interchangeably.

          I agree with what you're saying, and the parent poster most likely was using the word pesticide to mean insecticide (because there is

      • No, it's just a lame excuse to have yet another technology banned. And this ban on human germline GM has been a hobby horse of Jeremy Rifkin for years. NobOdy is going to spray Roundup on humans for any reason, but Rifkin and his friends in the Hollywood Party will find some excuse to have human genetic engineering banned.

    • by WrongMonkey ( 1027334 ) on Thursday August 04, 2016 @03:19PM (#52646807)
      Among actual scientists, GMOs are a considered a beneficial technology and legislation to oppose GMOs is ignorant and detrimental to society. https://www.washingtonpost.com... [washingtonpost.com]
      • Re: (Score:3, Insightful)

        by Anonymous Coward

        So what is wrong with labeling them? We label vitamins. We label prescriptions. We label water bottles. Why is labeling GMOs so terrible?

        • So what is wrong with labeling them? We label vitamins. We label prescriptions. We label water bottles. Why is labeling GMOs so terrible?

          We label for ingredients, not for processes. How big would a food label have to be if we had to say "Harvested with combines" and "Shipped in refrigerated trucks" on each of them?

          I speak as a person to whom nutrition labels are very important, because my wife is on a complex renal diet. We have to squint at the fine print for substances nobody else cares about, like phosphorus and protein. The more clutter you add to our labels, the bigger a magnifier we have to use.

          • We label for ingredients, not for processes.

            For one thing, DNA is a material present in uncooked food, making it arguably part of an ingredient. (I admit to not having read your definition of "ingredient". If you wish, I can discuss this issue in the context of on a cited definition.) For another, the nutritional value of each ingredient depends on the plant's phenotype, which is affected by changes to its genotype.

        • We label added vitamins and nutrition facts as those are actual components of food. Genetic engineering is not a food component, and it makes no more sense to label it that it does to label something has being produced through doubled haploid hybridization, grafting, or any of the other many things that go unlabeled (most of which the average person has no idea is occurring). The other difference is that there haven't been years of fearmongering targeting vitamins; is it really informative when you tell p

        • by Copid ( 137416 ) on Thursday August 04, 2016 @08:33PM (#52648617)
          There's nothing wrong with labeling per se. It's just that labeling mandates are basically a scam to allow this to happen:

          Scientists: This stuff is safe.
          Organic industry: If it's safe, why not label it?
          [labels go in]
          Organic industry: If it's safe, why are there MANDATORY LABELS? BOOGA BOOGA! Buy organic!

          The problem of people wanting to find GMO free food is easily solved by voluntary labels put on by companies that want to cater to people with food hang-ups. It works for Kosher, and there's already a "Non-GMO Project Verified" label that's perfectly happy to scam you out of your cash by putting its stamp on salt and bottled water.
        • There is a finite amount of room on any food container for labels, and there are things that matter more.

          I have friends with serious food problems. One will react really badly to sulfites, one to gluten, another to cornstarch. I have to read ingredient labels in detail and hope I'm interpreting them correctly if I don't want to poison my friends. I'd really like, for example, a sulfite label, since that can cause an actual problem, so I'm not real keen on a mandatory label for something that really do

      • by jedidiah ( 1196 )

        Of course "actual scientists" don't give a damn about the broader implications of what they are doing. They have this scientific hubris that everyone should just accept their work based a sort of blind trust. Their attitude and those of their followers are no different than any other religion.

        • Get to know some scientists. They're fanatical about being able to check each other's work, because science doesn't actually work if it relies on blind trust. Most of the scientists I've known will explain their work and why they're doing it and what the science is if asked, or sometimes if the listener just stands there and looks halfway interested.

          If you want to check on anything scientific, a university library should be able to provide everything you want to check on starting with the results of ex

    • Not to mention a lot of tin foil hatters consider cross pollination GMO too.
  • by lgw ( 121541 ) on Thursday August 04, 2016 @02:32PM (#52646459) Journal

    A: Human gene editing could lead us to a dark place, let's not do that.

    B: This will cause us to be left behind in the science of human gene editing!

    A: Yes, well, that was rather the point, wasn't it?

    Obviously this was the intent. I'd personally be willing to take a few risks to get the cure for cancer, but if Europe takes the risks we still get the cure for cancer - just not the profits from it.

    • [...] if Europe takes the risks we still get the cure for cancer - just not the profits from it.

      Yeah...

      We would be benefiting from the very thing that we banned for ethical reasons.... The ban on gene editing should be tied to a ban on science, treatments and medicine derived from banned work as well. Otherwise, what's the point?

      I am, by the way, completely for unrestricted research into all aspects of science so long as no humans or animals are harmed.

      • Perhaps those instituting the ban simply realize the levels of depravity in US big pharma. If that morally bankrupt cadre is allowed to work with gene splicing, pretty soon we'll have dick pills with side effects of body horror.

        "Seek medical treatment for an erection lasting longer than 4 hours, or if you begin to grow mantis-like forearm spikes or spider mandibles,"

        No ... such technology should be left to less evil groups (basically anyone except 1940s era Germany). If those groups develop something ama

        • They haven't outlawed the mantis-forearm-erectile-disfunction experimentation. They've only outlawed making the mantis forearm inheritable by children.

    • You may not have a problem with germline gene modification but maybe the rest of humanity might or those 5, 10, or even 50 generations from now. We know very little about genetics and how each gene interacts with others. While some things such as the gene for eye colour appear to be straight forward the genes that give rise to disease usually are due to a "fault" in one of many.

      • A number of mitochondrial diseases are due to mutations in a very small set of genes, due to their immediate lethality. They sound like prime candidates for a fix.

        However, there is a much simpler solution, which is prenatal testing and early abortion. As the foetus isn't going to survive for a long time anyway, this will not change much in final outcomes right now, and will provide a solution for everyone, instead of the extremely expensive and uncertain germline modification that will only be available to

        • by lgw ( 121541 )

          Sure, just full on eugenics - just kill the unacceptable fetus (or, presumably, infant if that's where it's detected). Not sure why that would bother anyone. Of course, some problems won't manifest until puberty, but I think you'll get a lot less objection to offing unwanted teenagers.

  • Behind countries doing gene splicing to create Frankenfoods?

    Yeah, not a big deal. We just outsource the wet lab part of the study to Canada or the EU anyway. Then we do the grunt work here.

    Want to know what's leaving us behind?

    Money spent on higher education and grants.

    That's where the missing part is.

  • by Crashmarik ( 635988 ) on Thursday August 04, 2016 @02:37PM (#52646503)

    Seem surprisingly willing to push Frankenpeople.

    Oh well the U.S. also pioneered eugenics but was left in the dust by European nations and that worked out well.

  • by jimbob6 ( 3996847 ) on Thursday August 04, 2016 @02:44PM (#52646543)
    Ah come on guys. China is getting mutant super solders.

    Science may now be capable redefining the human condition and if we aren't at the forefront of this crime against nature
    well then that's just un-American.
  • guinea pigs (Score:4, Insightful)

    by Tablizer ( 95088 ) on Thursday August 04, 2016 @02:44PM (#52646549) Journal

    If the adjustments are "simple" fixes like curing a disease by correcting a mutation or two, I see no problem with it.

    But if it's about making a "super race" by fiddling with body type or the brain, then I say let other countries be the guinea pigs and learn the hard road lessons of fiddling.

    We can gradually adopt practices that prove themselves over time.

    However, I can image a scenario where a given set of tweaks makes say 95% of the subjects faster, smarter, and/or more disciplined, etc., but 5% have nasty side-effects. Such countries may conclude the trade-off is worth it and have an overall better GDP even if some suffer because of it.

    That creates a conundrum: how do you compete with a country ready to throw a percentage of their population under the bus to get aggregate gains, especially if they become a military risk to us.

    • Re: (Score:3, Interesting)

      If the adjustments are "simple" fixes like curing a disease by correcting a mutation or two, I see no problem with it.

      But if it's about making a "super race" by fiddling with body type or the brain, then I say let other countries be the guinea pigs and learn the hard road lessons of fiddling.

      You are implying some arbitrary normal human as a baseline reference. And the only difference between those two scenarios is whether you are moving someone up to that baseline or past that baseline. But why should we set the goalpost at average human instead of setting the goalpost of optimum human potential? Most of us who aren't Olympic-level athletes and super-geniuses all has some genetic conditions that hold us back from reaching the greatest heights of human achievement. If those conditions can be fi

      • But why should we set the goalpost at average human instead of setting the goalpost of optimum human potential?

        Well, for one thing, because the history of eugenics proves that "optimum human potential" is generally more of a culturally contingent set of metrics rather than an objective measure of human potential.

        Are we better than the Nazis or various other eugenics projects in recognizing how "unscientific" our values sometimes are? Hopefully we're better than that... But I'll bet in a hundred years or so, scientists will look back and shake their heads at how ignorant we were in thinking X signified a good me

        • "But... Nazis!" I'm trying hard to fathom how having superb eyesight, hearing, strength, intelligence, memory, etc. is arbitrarily fashionable. The fundamental aspects that define the human experience is not something that is merely cosmetic.

          Besides, technology and society over time shapes us by removing natural pressures that select for positive traits. Since breeding kennels for humans would be considered immoral and impractical, using direct genetic manipulation is the only acceptable method for impro
    • The risk is not just external.

      There are a lot of deep ethical problems here. Do we want to "cure" conditions that cause people to be troublesome and not follow orders?

      I'd like to see careful discussion about what is and isn't OK. That isn't unusual - I'm not allowed to just build a nuclear reactor in my back yard either - dangerous projects require reasonable review .

      • Or, for that matter, what do we want to do about autism? We definitely would like to make sure nobody's on the far end of the spectrum, but for those of us on the near end it's part of who we are, and isn't just a detriment.

  • Here's the relevant section of the bill:

    (Sec. 749) Prohibits the FDA from acknowledging applications for an exemption for investigational use of a drug or biological product in research in which a human embryo is intentionally created or modified to include a heritable genetic modification. Provides that any submission is deemed not to have been received, and the exemption may not go into effect.

    While this prevents any FDA approval, I don't see how it would stop scientists from performing experiments, and it doesn't seem to have any criminal or civil penalties attached to it. Are there other bills that provide for this?

    • by Jzanu ( 668651 )
      The problem is more from restrictions on federal research funds, and the rules against related research in labs receiving any federal funds. See here [nature.com] for an example.
      • The problem is more from restrictions on federal research funds, and the rules against related research in labs receiving any federal funds.

        So basically it's not a ban in the sense that it's verboten, just that they won't be able to get any research dollars from the government?

        • Or FDA approval.
  • Genetically-enhanced communist super-humans are going to seduce our undersexed Millennials! Sexually-transmitted retroviruses will modify their genome to make them more communist! Code Red! Code Red! *starts breathing into paper bag*

    • Meanwhile, the NIH is lifting it's ban on chimera research.

      Must have been after intense pressure from the furry lobby. Seems ironic that the Chinese will be the ones with human super soldiers [wikia.com] but we'll have tiger-man warriors.

  • All it does is prevent the procedure from being performed in the US. It also keeps the U.S.A. out of the initial lawsuits. Quite frankly if your doing germ line editing then everyone involved needs their "rights" voided. It's dangerous enough and the U.S. can't afford the lawsuits.

    But of course U.S. companies are going to be involved in the "research" and profits. The procedures just won't be performed here.

  • Eichmann: If we don't drown Jews in the freezing tanks of water, we will FALL BEHIND in the study of human thermodynamics and hypothermia!

    Just because we CAN doesn't mean we SHOULD.
    There are some things that it's perhaps better to "fall behind" on?

    • There are some things that it's perhaps better to "fall behind" on?

      Sure. Curing diseases is not one of those things.

  • But then iot turned out that the best treatments are from stem cells harvested from your own body. Stem cells from other bodies turned out to become cancerous.

  • I'd be less concerned about the effects of the ban and way more concerned about the ignorance and hostility to science that's behind it.

  • Conversation overheard in Syria in 2028...

    "Who wants to go to the U.S.?"

    "Not me. I hear that hyper religious shithole still has people who have Type 1 diabetes and Huntington's disease... can't you freaking imagine?"

  • Is that not the real problem? The interpretation of a 2000 year-old book, by just a few really and then a larger number of people have to accept their word, determines what is acceptable research and what is not. Then given enough elected legislators among that larger number and it affects laws around the research.

    The interpretation is sometimes confusing though. I've never read it but I'm led to believe there is an assertion within it, "Thou shalt not kill", but the interpreters of the book don't object to

    • by tepples ( 727027 )

      I've never read it but I'm led to believe there is an assertion within it, "Thou shalt not kill", but the interpreters of the book don't object to extremely well funded military research.

      You refer to a passage in Exodus 20. A more accurate translation, given the context of other uses of the Hebrew word translated "kill" in the King James Version, is "You must not commit murder." That makes more sense alongside the capital punishment for the most serious sins set forth in Leviticus.


  • How am I supposed to get my augmentations without becoming addicted to Neuropozyne [wikia.com] if Sarif's gene therapy is outtlawed? Darrow or Taggart must be behind this!
    :)

C'est magnifique, mais ce n'est pas l'Informatique. -- Bosquet [on seeing the IBM 4341]

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