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posted by takyon on Tuesday December 11 2018, @07:13PM   Printer-friendly
from the missing-inaction dept.

China gene-editing scientist's project rejected for WHO database (original)

A Chinese branch of the World Health Organization has withdrawn an application to register He Jiankui's project in its clinical database. The move comes after China's government halted He's work, saying it would take a "zero tolerance attitude in dealing with dishonorable behavior" in research.

He has faced a global backlash after claiming to have produced the world's first gene-edited babies in a bid to make them HIV-resistant. The project drew international criticism for its lack of transparency, with health officials and other scientists concerned that it raises ethical questions that will taint other work in the field.

The application to enter the database of the Chinese Clinical Trial Registry was rejected because "the original applicants cannot provide the individual participants' data for reviewing," according to the registry's website.

[...] He's whereabouts are still unknown. Hong Kong newspaper Apple Daily cited unnamed sources earlier this month that the researcher was put on house arrest by his university, Southern University of Science and Technology in Shenzhen, but representatives of the university and He's lab both declined to comment.

takyon: Several news organizations reported on Dec. 3 that He Jiankui was missing.

Previously: Chinese Scientist Claims to Have Created the First Genome-Edited Babies (Twins)
Furor Over Genome-Edited Babies Claim Continues (Updated)


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  • (Score: 1, Insightful) by Anonymous Coward on Tuesday December 11 2018, @07:17PM (25 children)

    by Anonymous Coward on Tuesday December 11 2018, @07:17PM (#773013)

    Literally NO PEOPLE were involved.

    A cell is not a person; a clump of cells is not a person.

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  • (Score: 2) by takyon on Tuesday December 11 2018, @07:42PM (3 children)

    by takyon (881) <reversethis-{gro ... s} {ta} {noykat}> on Tuesday December 11 2018, @07:42PM (#773028) Journal

    If they wanted to do the research, they could have just done the gene editing, confirmed that it was successful, and then destroyed the clump of cells. Instead they let it grow into a person (actually two or three of them).

    But I'm on Team Jiankui so whatever.

    --
    [SIG] 10/28/2017: Soylent Upgrade v14 [soylentnews.org]
    • (Score: -1, Offtopic) by Anonymous Coward on Tuesday December 11 2018, @08:02PM

      by Anonymous Coward on Tuesday December 11 2018, @08:02PM (#773043)

      Seems like traditional methods of gene editing are even less ethical.

    • (Score: -1, Redundant) by Anonymous Coward on Tuesday December 11 2018, @11:51PM

      by Anonymous Coward on Tuesday December 11 2018, @11:51PM (#773188)

      Seems like traditional methods of gene editing are even less ethical.

      It's called humor, folks.

    • (Score: -1, Redundant) by Anonymous Coward on Thursday December 13 2018, @02:40AM

      by Anonymous Coward on Thursday December 13 2018, @02:40AM (#773853)

      Seems like traditional methods of gene editing are even less ethical.

      It's called humor, folks.

  • (Score: 5, Insightful) by edIII on Tuesday December 11 2018, @08:36PM (12 children)

    by edIII (791) on Tuesday December 11 2018, @08:36PM (#773060)

    Like Takyon said, these developed into children that now have to live full lives with whatever hack job the scientist did on their genes.

    I do have a problem with that, and it's effectively experimenting on human beings. Just because it is at the very start of life is irrelevant, and doesn't make it ethical. Remember, these children have to live with whatever he attempted. They could've lived without manipulation, assuming a normal IVF process. Would it have been experimentation on a clump of cells, and they terminated it, then there may well be no ethical questions involved. Moral, and religious ones to be sure, but not ethical if the donor had informed consent.

    This isn't 9th fucking generation advanced genetics you see in Sci-fi. This is pre-alpha shit, with the children having to suffer that.

    --
    Technically, lunchtime is at any moment. It's just a wave function.
    • (Score: 0) by Anonymous Coward on Tuesday December 11 2018, @09:29PM (9 children)

      by Anonymous Coward on Tuesday December 11 2018, @09:29PM (#773098)

      What if he edited the genes, and then sampled the result to conclude that only the desired, well-understood edits were made?

      Then, the experiment is not the resulting genome, but rather the means by which to produce the resulting genome—if an unexpected genome resulted, the embryos could be destroyed, thereby preventing an unknown outcome for the resulting person.

      This is like vaccination: The outcome is so well understood, it's not considered an experiment.

      This is unlike circumcision: The penis/sexuality is so variable, it's an experiment every single time.

      • (Score: 5, Insightful) by Freeman on Tuesday December 11 2018, @09:48PM (8 children)

        by Freeman (732) on Tuesday December 11 2018, @09:48PM (#773112) Journal

        We understand very little, how one's DNA works and what chopping out one bit of DNA would actually do to someone. Sure, we can speculate, but what if that bit of DNA also does something that we didn't know? At what point are you doing science and at what point are you doing Dr. Evil "science"?

        --
        Joshua 1:9 "Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee"
        • (Score: 0) by Anonymous Coward on Tuesday December 11 2018, @09:52PM (7 children)

          by Anonymous Coward on Tuesday December 11 2018, @09:52PM (#773116)

          You're assuming that which is to be proved: That the experiment is the resulting genome, not the editing technique.

          In other words, it's not enough to say that this guy did something unethical; the burden of proof is on the people to lay out objective criteria and then apply them. The reason nobody wants to do this is because if they lay out objective criteria, that will tell everyone what they must do in order to edit genomes ethically, which will basically give the OK to start making designer people, whom the powers-that-be fear.

          • (Score: 2) by bob_super on Tuesday December 11 2018, @10:00PM (6 children)

            by bob_super (1357) on Tuesday December 11 2018, @10:00PM (#773123)

            > which will basically give the OK to start making designer people, whom the powers-that-be fear.

            The power-that-be are the ones who can afford designer babies.

            Did the mother carrying those twins inside her for 9 months know that any unexpected CRISPR side-effects would have put her in danger, since her uterus contained two "mutant" frankenbabies ?

            • (Score: 0) by Anonymous Coward on Tuesday December 11 2018, @10:09PM (5 children)

              by Anonymous Coward on Tuesday December 11 2018, @10:09PM (#773128)

              Put another way: You can say the same about a traditionally created fetus; the problem is even worse, because you are literally just mixing sperm and eggs and hoping for the best.

              • (Score: 3, Insightful) by bob_super on Tuesday December 11 2018, @10:27PM (4 children)

                by bob_super (1357) on Tuesday December 11 2018, @10:27PM (#773136)

                (I"m not doing anything "again", check thread names)

                The natural process has its imperfections, most of which result in miscarriages, as would most major CRISPR mishaps.
                But "just mixing sperm and eggs and hoping for the best" has been done billions of time, and does not technically involve slicing the DNA.
                Our genetic editing has gotten better, and been done hundreds of thousands of times in various lab animals. But lab protocols are typically targeting a specific result, and might potentially miss a side-effect which is not obvious in short-lived animals the way it will be in humans.
                It's a false equivalence.

                The proper equivalence is that early IVF was thought risky, deemed unethical by many, and people worried about side-effects. Yet, decades later it has become a routine thing (though with a significant failure rate).

                Gene-editing great apes would have been the normal progression before jumping to humans, because involving a mother, two babies, and an AIDS-resistance gene has to be properly vetted for risk by a group of specialists.
                You don't know yet that CRISPR didn't do its job wrong (too much editing, contamination...), and you don't know whether that gene could turn out to have terrible side-effects after being expressed for a decade inside a human.

                • (Score: 0) by Anonymous Coward on Tuesday December 11 2018, @10:32PM (3 children)

                  by Anonymous Coward on Tuesday December 11 2018, @10:32PM (#773139)

                  I don't disagree, but that's the whole point: Where are the objective criteria for what is ethical, so that everyone may proceed with the game in confidence?

                  In my opinion, trying to add improvements or trying to remove problems is much more ethical than squirting semen into a random woman during a one-night Tinder stand, which doesn't result in house arrest (anymore).

                  • (Score: 3, Interesting) by Freeman on Wednesday December 12 2018, @04:12PM (2 children)

                    by Freeman (732) on Wednesday December 12 2018, @04:12PM (#773491) Journal

                    It's not a game and shouldn't ever be treated as such. (Though, I assume, you were just using it as a turn of phrase.) Slicing an unborn babies' DNA in bits, is more ethical than a one-night stand? I'm going to have to go with, No. You have it precisely backwards, unless there was not a consensual agreement to such an event. In which case, I would place them on equal footing. You think teenagers are rebellious now, just think of when they figure out that not only are you controlling their actions, but you determined they would be the first kid born with pink hair.

                    --
                    Joshua 1:9 "Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee"
                    • (Score: 0) by Anonymous Coward on Wednesday December 12 2018, @05:29PM (1 child)

                      by Anonymous Coward on Wednesday December 12 2018, @05:29PM (#773542)

                      ...from their parents, while allowing their parents to raise their children without having to act like lepers seems like a good reason to test this treatment.

                      Sure the kids could have unintended side effects and live horrible lives or die. But in many parts of the world that is already the truth thanks to air, water, soil, or food pollution. Your parents genes can have unintended side effects even without these modifications, and despite all the sequencing done on humans for 'high risk genes' there are still hundreds of thousands to millions of other genes that could ruin your life in the wrong coupling as well.

                      While I think this guy deserves some social shunning for what he did, I don't think it is any worse than the grave robbing past generations did to complete their research on physiology, or the hundreds of morally questionable experiments done since that catapulted modern medicine forward. And compared to many of those past experiments, this one had the potential for far better research and computer analysis to back it (assuming he wasn't grossly negligent in his work) to ensure that the children live healthy productive lives at no higher risk of serious defects than the general population whose parents haven't undergone genetic screening before conception, or screening of their child's dna while in the womb. The latter of which has its own risks for the fetus as well.

                      • (Score: 2) by Freeman on Thursday December 13 2018, @04:07PM

                        by Freeman (732) on Thursday December 13 2018, @04:07PM (#774000) Journal

                        Here's a super great idea, how about don't have a kid, if you are HIV positive? I get that, if you aren't using safe sex methods you may not know. Then, I would just call you reckless. Sure, there will be a very small number of cases where weird random something happens and now I'm pregnant and am HIV positive / have AIDS.

                        Gene-editing unborn babies and saying let's see what happens is very reckless and very dangerous. What happens, if instead of creating a child that is highly resistant to contracting HIV / AIDS. He creates a child who, if infected by HIV/AIDS would end up having some sort of Super HIV/AIDS that isn't responsive to any known treatments. Well, #1 that kid / adult is royally screwed and so is anyone else that contracts it, if that Super Bug gets out into the wild.

                        --
                        Joshua 1:9 "Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee"
    • (Score: 2) by c0lo on Tuesday December 11 2018, @11:28PM (1 child)

      by c0lo (156) Subscriber Badge on Tuesday December 11 2018, @11:28PM (#773176) Journal

      This is pre-alpha shit, with the children having to suffer that.

      The risk is there, yes, but there's no absolute certainty they will suffer.

      --
      https://www.youtube.com/watch?v=aoFiw2jMy-0 https://soylentnews.org/~MichaelDavidCrawford
      • (Score: 0) by Anonymous Coward on Wednesday December 12 2018, @12:18AM

        by Anonymous Coward on Wednesday December 12 2018, @12:18AM (#773203)

        We could change that. (Seeing as how we as a species are prone to warrantless prejudices anyway.)

  • (Score: 3, Insightful) by tangomargarine on Tuesday December 11 2018, @09:04PM (7 children)

    by tangomargarine (667) on Tuesday December 11 2018, @09:04PM (#773084)

    You can't use the abortion "it's just a clump of cells; it's not a person" argument when the abortion doesn't happen and the child is subsequently born.

    --
    "Is that really true?" "I just spent the last hour telling you to think for yourself! Didn't you hear anything I said?"
    • (Score: 1, Interesting) by Anonymous Coward on Tuesday December 11 2018, @09:40PM (6 children)

      by Anonymous Coward on Tuesday December 11 2018, @09:40PM (#773108)

      It's possible to determine exactly what changes were made.

      The experiment is not the resulting genome; the experiment is whether the technique will produce the desired genome.

      Take a random sperm and a random egg, and use them to make genome G—this is the age-old way (i.e., fucking) of creating a genome, and is therefore "normal" or "ethical". Now, use editing techniques to create a new genome G'. Sequence G' to determine that it differs only in the way you intend—that is, it should be a "normal", "ethical" genome, G, but with HIV-resistance added.

      Now, implant G' into an embryo and grow it into a person.

      The experiment was finished before there was a person.
      In fact, at this point, it would be unethical to grow G rather than G', as G would be objectively inferior to G'.

      • (Score: 3, Insightful) by tangomargarine on Tuesday December 11 2018, @10:55PM (5 children)

        by tangomargarine (667) on Tuesday December 11 2018, @10:55PM (#773161)

        ...assuming all the techniques you used worked perfectly and there are no side effects, yes. Considering this is basically the first alpha of the product I am very skeptical of that claim.

        I'm not arguing that there are ethical questions; I'm saying you can't dismiss one entire side of the discussion by using logic from a different argument that doesn't fit in this context.

        --

        But if you really want me to, here, I'll take a stab at it:

        Let's say this experiment is instead, let's see how extreme a case of Fetal Alcohol Syndrome we can give a fetus. So we go about modifying it in the womb or whatever, and then oops! we forgot to abort it. Now it's been born and is going to live life and grow up with FAS.

        You don't see how this is an ethical problem? Yes, congratulations, the experiment was "finished" before birth, but that's worth jack shit to the kid that results.

        The experiment was finished before there was a person.

        Then why wasn't the experiment discontinued?

        --

        You're arguing from the standpoint of what the technology will eventually be. The other people in this discussion are arguing from where the technology currently is.

        --
        "Is that really true?" "I just spent the last hour telling you to think for yourself! Didn't you hear anything I said?"
        • (Score: 0) by Anonymous Coward on Tuesday December 11 2018, @11:37PM (1 child)

          by Anonymous Coward on Tuesday December 11 2018, @11:37PM (#773180)

          Yes, my experiment finished successfully, we can confirm the chain reaction can be initiated. The chain reaction itself is not my problem.

          • (Score: 2) by tangomargarine on Wednesday December 12 2018, @03:41PM

            by tangomargarine (667) on Wednesday December 12 2018, @03:41PM (#773483)

            I'm just going to start swinging my fists around; it's not my fault your face happens to be in the way.

            --
            "Is that really true?" "I just spent the last hour telling you to think for yourself! Didn't you hear anything I said?"
        • (Score: -1, Offtopic) by Anonymous Coward on Tuesday December 11 2018, @11:54PM

          by Anonymous Coward on Tuesday December 11 2018, @11:54PM (#773191)

          Especially when she's a drunkard you met on Tinder for casual sex?

          That's not against the law.

        • (Score: 1) by DeVilla on Thursday December 13 2018, @06:04PM (1 child)

          by DeVilla (5354) on Thursday December 13 2018, @06:04PM (#774052)

          The experiment was finished before there was a person.

          Then why wasn't the experiment discontinued?

          The experiment wasn't complete. We still have to see the the HIV immunity worked. That will require exposing the specimens to the disease once they have developed some more.

          We will also need to watch for unexpected results like physical or mental abnormalities or super powers.

          • (Score: 2) by tangomargarine on Thursday December 13 2018, @08:28PM

            by tangomargarine (667) on Thursday December 13 2018, @08:28PM (#774121)

            Then the AC's already-dubious argument for how it wasn't unethical is just outright wrong.

            Seems a bit weird that they decided to test the splicing with HIV, though. Couldn't they have picked something that doesn't leave you so totally fucked if the DNA engineering doesn't work?

            --
            "Is that really true?" "I just spent the last hour telling you to think for yourself! Didn't you hear anything I said?"