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posted by martyb on Tuesday June 11 2019, @06:22AM   Printer-friendly
from the CRISPR-critters dept.

Russian biologist plans more CRISPR-edited babies

A Russian scientist says he is planning to produce gene-edited babies, an act that would make him only the second person known to have done this. It would also fly in the face of the scientific consensus that such experiments should be banned until an international ethical framework has agreed on the circumstances and safety measures that would justify them.

Molecular biologist Denis Rebrikov has told Nature he is considering implanting gene-edited embryos into women, possibly before the end of the year if he can get approval by then. Chinese scientist He Jiankui prompted an international outcry when he announced last November that he had made the world's first gene-edited babies — twin girls.

The experiment will target the same gene, called CCR5, that He did, but Rebrikov claims his technique will offer greater benefits, pose fewer risks and be more ethically justifiable and acceptable to the public. Rebrikov plans to disable the gene, which encodes a protein that allows HIV to enter cells, in embryos that will be implanted into HIV-positive mothers, reducing the risk of them passing on the virus to the baby in utero. By contrast, He modified the gene in embryos created from fathers with HIV, which many geneticists said provided little clinical benefit because the risk of a father passing on HIV to his children is minimal.

[...] "The technology is not ready," says Jennifer Doudna, a University of California Berkeley molecular biologist who pioneered the CRISPR-Cas9 genome-editing system that Rebrikov plans to use. "It is not surprising, but it is very disappointing and unsettling."

Alta Charo, a researcher in bioethics and law at the University of Wisconsin-Madison says Rebrikov's plans are not an ethical use of the technology. "It is irresponsible to proceed with this protocol at this time," adds Charo, who sits on a World Health Organization committee that is formulating ethical governance policies for human genome editing.

Third time's the charm? I guess they won't pick a genetic disease to target instead since preimplantation genetic diagnosis can already handle that. Others will have to resort to gene therapy after the child is born.

Previously: Chinese Scientist Claims to Have Created the First Genome-Edited Babies (Twins)
Furor Over Genome-Edited Babies Claim Continues (Updated)
Chinese Gene-Editing Scientist's Project Rejected for WHO Database (Plus: He Jiankui is Missing)
Chinese Scientist Who Allegedly Created the First Genome-Edited Babies is Reportedly Being Detained
China Confirms That He Jiankui Illegally Edited Human Embryo Genomes
China's CRISPR Babies Could Face Earlier Death

Related: HIV Reportedly Cured In A Second Patient


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  • (Score: 3, Insightful) by HiThere on Tuesday June 11 2019, @06:25PM (4 children)

    by HiThere (866) Subscriber Badge on Tuesday June 11 2019, @06:25PM (#854305) Journal

    Since you're focusing on the ethics of the decision, it's possible to argue that informed decision is nearly impossible. This is a highly technical area and the risks and benefits are not known, but only estimated. And knowledgeable estimators differ significantly in their evaluations.

    That said, if a woman has AIDS, then the only sure method of guaranteeing that her child will not have AIDS is for her not to have a child. And this is something people don't like to decide.

    Another factor is that the woman isn't the only part of the proceedings, there's also the not-yet-existing child...who can't possibly give informed consent. So that can't be the only criterion unless you want to say all children should be killed before conception.

    The traditional answer is "First, do no harm!", and that's the stand of the traditionalists. It's also a dubious guideline when the existing state is moribund. But what are you going to replace it with? The analog of "When in doubt, cut and find out." has a long history of many bad results, along with many successes.

    In a way this is like the ethics of double-blind studies, which are often terminated prematurely if there's strong sign of either success or failure. But here we're dealing with an individual case rather than a study group. If the treatment is a failure, the result may be a 100% death of the sample (of size 1). With this as a model it is quite reasonable to argue in favor of this approach. As the tests are more chancy, the sample size normally decreases, often at the expense of the reliability of the test.

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  • (Score: 3, Informative) by All Your Lawn Are Belong To Us on Tuesday June 11 2019, @08:30PM

    by All Your Lawn Are Belong To Us (6553) on Tuesday June 11 2019, @08:30PM (#854361) Journal

    Modded insightful, but HIV and pregnancy might not be the best choice even though what you've said is technically correct. (HIV is the virus. AIDS is a disease caused by the presence of HIV. It helps to be precise). Today there are also advancements in technique of delivery and PrEP/PEP, and women with HIV can and do give birth to babies who do not develop the virus. More information [nih.gov]. It's a very big decision, but a woman who is HIV positive and gets pregnant (or chooses to become pregnant) can be helped to have a healthy baby today.

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  • (Score: 2) by fyngyrz on Wednesday June 12 2019, @06:31PM (2 children)

    by fyngyrz (6567) on Wednesday June 12 2019, @06:31PM (#854765) Journal

    This is a highly technical area and the risks and benefits are not known, but only estimated.

    Yes, certainly; but one can inform someone of this (they probably already should know, but even so, they should be so informed when a choice in pending) and they can then make choices based on their willingness to expose themselves to the unknowns.

    Most of us do this every day. We walk out the door with decent knowledge of some of the risks, aware that there are others, and unaware of the specifics of many of them. Some are long odds, and so we discard them (hit by meteor) some are modifiable by prudent behavior but can escalate barring same (hit by lightning), some are simply unknown until whatever it is lurches into one's life.

    I — hell, everyone — make decisions every day on incomplete information about risk, using the best information I can get. Usually. There's no good reason to forbid me X procedure based upon the fact that any information you can give will be, inevitably, be incomplete. The obligation should simply be to let me know the information is incomplete. Even though, of course, if I have even half a wit intact, I should obviously know that.

    I took one of our cats to the vet for a tooth removal a few months back. I evaluated this as relatively low risk; not our first rodeo here, and the vet was perfectly comfortable with the idea. But the cat got an infection, it migrated into his brain, and we lost an old friend in a matter of just a few days. This was (at the very least) an unlikely outcome.

    Should I have sued? Should the vet be castigated or held culpable because we weren't told "your cat could get a brain infection"? Of course not. That's just stupidity. Should we have avoided the tooth removal? The cat was absolutely miserable. So, no. A decision made without specific knowledge of a risk that indeed did come home to roost, most unpleasantly. A perfectly good decision, which we absolutely had the right to make for our little furry ward. Us. Not the vet. Not you. Not some ethics committee. Not the law.

    What we were aware of is that unlikely things can happen. We made the choice knowing that anyway, and look, the coin came up (no) tails. That's the nature of free choice.

    There's no valid case to be made to shut people away in padded rooms because "something might happen. To inform as best is practical and reasonable is golden. It should, among other things, be one of the most important roles of government (information about the consequences of using drugs, for instance, is golden... whereas the drug war... that's just evil.) To impose your will on a supposedly free person in any matter that can be fairly described as an informed personal choice... that's also evil. And in point of fact, if you can do it, they're considerably less free than they otherwise might be.

    With this as a model it is quite reasonable to argue in favor of this approach.

    It also strikes me as quite reasonable for you to argue this for yourself. It does not strike me as reasonable for you to tell someone else this is how it must be.

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    • (Score: 2) by HiThere on Wednesday June 12 2019, @07:48PM (1 child)

      by HiThere (866) Subscriber Badge on Wednesday June 12 2019, @07:48PM (#854802) Journal

      Well, we're in agreement, but I think you misunderstood the thrust of my argument. I was arguing on the side of "the doctor should be allowed to offer the treatment". With lots of quibbles and caveats, because I'm uncomfortable with gene-line surgery, and we DON'T know the long term effects, where in gene-line alteration a lifetime isn't sufficient to determine them. One such natural event left humans (and a few other apes) unable to synthesize vitamin C. I think this was a long term disadvantage, but it didn't hurt things when all the food had more vitamin C than could be used.

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      • (Score: 2) by fyngyrz on Wednesday June 12 2019, @08:22PM

        by fyngyrz (6567) on Wednesday June 12 2019, @08:22PM (#854818) Journal

        Oh, sorry, my bad. I was wound up a bit there. :)

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