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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: 2) by fyngyrz on Tuesday June 11 2019, @03:53PM (11 children)

    by fyngyrz (6567) on Tuesday June 11 2019, @03:53PM (#854231) Journal

    Within the constraints of informed consent, such walls blocking treatment are not examples of ethics. They are examples of lack of ethics. Note the informed component; when a treatment can be performed to address a medical problem, the only legitimate path is that I am informed of the unknowns (or conversely, the knowns are delineated and everything else is clearly assigned to the unknowns), and then I decide to risk or not risk.*

    A great deal of what is wrong with both our legal and medical systems arises because on the treatment end, authoritarian malefactors are asserting rights over others they have no possible legitimate claim to, and because on the legal end, tort law neither properly requires or validates that people be informed, nor does it prevent them from kicking back when, properly informed, they choose to take a risk and they come up short.

    Many of the supposed ethics rules we're discussing here are broken mechanisms that arise due to a society failing to deal properly with these issues, where instead it has fallen into rote behaviors that punt dealing with them off into mechanistic, dysfunctional paths, simply papering them over with a manifestly false veneer of "ethics" sufficient to survive only the most casual examination.

    When you withhold treatment from people who require it, what you're doing is creating a petri dish for underground treatment systems; systems within which the regulation you hand-wave about does not exist at all; systems within which failing to create an informed consumer of services is no barrier; systems within which malpractice (actual malpractice, not 99% of what tort law fumbles about with) is subject to no recourse; systems within which peripheral supporting mechanisms range from scarce to nonexistent.

    We have seen this happen over and over again, in depressing detail, in regimes ranging from coathanger abortions; to "medical tourism" to get treatment that dysfunctional tort law and parasitic intermediate actors have moved from affordable to unaffordable; to the oppressed multitudes suffering under draconian recreational drug strictures; to the whole mess surrounding sex as a service; and so on and so forth. These are not imaginary consequences: they are real, they serve as incontrovertible evidence as to the highly toxic individual and broader social effects that inevitably result.

    Many such supposedly ethical rules turn out to be considerably more about mitigating risk to providers than they are about patient care — when we actually look at them honestly.

    The bottom line is that if you are making personal choices for another person, or damaging them, absent their informed consent, you are the failure point. You are the tyrant. You are the manifestation of unethical behavior. And there's no getting out of it by pontificating "those are the rules" or by pretending to ascribe to "higher principles", because there are no higher principles.

    The only factors that can legitimately mitigate considerations of one individual's personal liberty are (a) the state of being properly informed, and (b) infringement upon someone else's personal liberty. Actions in a society that impose limits and/or restrictions and/or costs upon its members can only be justified in the context of doing good. When such actions result in doing harm, something is clearly wrong. Were a patient to suffer a preventable condition subsequent to being refused treatment that was known to potentially be able to mitigate said condition, that serves only as a poster child for "here we have done wrong."

    The failures of the former is why those boards you disdain exist in the first place

    That would only be true in and of itself if those boards were acting ethically. As they are definitely not doing so, other components driving their existence are quite easily brought to light: components such as authoritarianism, tyranny, hubris, and willful blindness... just to name a few.

    Just because you make a rule and call it an ethical boundary does not make it so. When you violate fundamental principles of personal liberty and have brought ill results to society in general, you have blundered directly into non-ethical behavior. Every time.

    * "I" can variously stand in for parent(s), guardian(s)

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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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  • (Score: 2) by All Your Lawn Are Belong To Us on Tuesday June 11 2019, @08:21PM (5 children)

    by All Your Lawn Are Belong To Us (6553) on Tuesday June 11 2019, @08:21PM (#854359) Journal

    In a world of perfect information what you say might be true. But when we don't even know what the unknowns of a situation might be then you're up a cleft stick to be truly informed. Your provider can't provide you with informed consent if the information isn't fully developed. And if the designer of a technology says it is not ready to be applied yet because ethics, hand waving about "but my freedoms!" is not an acceptable appeal to that. If society does not have enough information to judge when something is safe to use then it is not acceptable to provide it for use because someone just wants to. And we're not talking, "well, anything can happen," risks, but that the parameters of safety have not yet been determined? No.

    A provider is not, and cannot, be held responsible for "underground treatment systems." It's that simple. A provider can only be held responsible for what the provider does, not what someone else does. Nor should a provider be forced to apply a treatment that the provider does not think is in the patient's best interests. Best interest as defined by the patient, yes. But no, you cannot go to a provider and say, "Yes, you must take my appendix out, my stomach hurts. No, I don't care that you don't think I don't have an appendicitis, just cut me open!" Providers have individual judgment for good reasons, and also have times when that judgment is curtailed to obey rules, guidelines, and principles for good reasons.

    This gets back to points we've already discussed previously, and I don't see the need to rehash them, that personal liberty is and indeed should be constrained at times. Since there's no way we can agree on that point I don't see much need to discuss it, other than the point is that the world is more complex than you believe it should be because it is more complex than that.

    Just because you suggest personal liberty should triumph over everything does not make it correct. When you violate fundamental principles of ethics by disregarding all other principles except autonomy you bring ill to society. Every time.

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    • (Score: 2) by fyngyrz on Wednesday June 12 2019, @06:50PM

      by fyngyrz (6567) on Wednesday June 12 2019, @06:50PM (#854776) Journal

      But when we don't even know what the unknowns of a situation might be then you're up a cleft stick to be truly informed.

      Please see my reply to the other poster, where I address incomplete information. Thanks.

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    • (Score: 2) by fyngyrz on Wednesday June 12 2019, @06:58PM (3 children)

      by fyngyrz (6567) on Wednesday June 12 2019, @06:58PM (#854780) Journal

      A provider is not, and cannot, be held responsible for "underground treatment systems." It's that simple.

      The responsibility for the genesis and continued existence of underground system devolves upon those who fail to provide for aboveground systems, or proactively block them. It's that simple. The responsibility doesn't roll downhill; it exists where the erection of the roadblock actually happens.

      So when someone — a legislator, an ethics board, etc. — creates hard roadblocks to aboveground treatment, service or retail systems, that's where the buck lands. Period.

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      • (Score: 2) by All Your Lawn Are Belong To Us on Wednesday June 12 2019, @08:45PM (2 children)

        by All Your Lawn Are Belong To Us (6553) on Wednesday June 12 2019, @08:45PM (#854828) Journal

        So despite your suggesting that people should have the right to choose whatever they want to (and presumably accept responsibility for same), when they choose to step outside the bounds of what the rest of society decides it is suddenly no longer their fault? Because they weren't given what they wanted? Doesn't scan. And if individuals have any sort of right to choose, then providers (or other elements of the system) have the right to choose not to provide.

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        • (Score: 2) by fyngyrz on Wednesday June 12 2019, @11:15PM (1 child)

          by fyngyrz (6567) on Wednesday June 12 2019, @11:15PM (#854902) Journal

          when they choose to step outside the bounds of what the rest of society decides it is suddenly no longer their fault?

          Oh, this. Look: society decided that slavery was okay. Society decided that applying all kinds of repression to women, and gays, and etc... was okay. Texas' society, in a fit of "just how stupid can we be" decided sex toys were illegal. Society decided that throwing a bunch of Japanese heritage citizens in camps was okay because they were of Japanese heritage. (German) society decided Jews needed a "solution." Society cobbled up the drug war. Society inflicted the (un)PATRIOT(ic) act on itself. Large segments of our society usurps women's decisions WRT their own bodies. Society said atheists could not hold office. Society allows the posting of Christian superstitious malarky all over the court system, nay, more like the entire government. Society said Rosa Parks had to go to the back of the bus. Society said kids had to go fight and die in Vietnam without either the right to vote or even legal cover to have a beer. Society says violence is "good entertainment" but both primary and secondary sexual characteristics are horrific offenses against the peace. The constitution says both "no double jeopardy" and "no ex post facto laws", and yet, we have both, at the state and federal levels. It also sets out the requirements for search and seizure, which society is presently working very hard to ignore. I could go on all day, truly.

          There are an enormous number of examples of absurd to bad to truly evil things society has done, where ignoring or working around said things was, is, or would be absolutely the very best possible act one could perform for society. Society is no paragon of virtue, nor is there any ethical cover in following bad law, bad rules, bad advice.

          So, yeah, it's absolutely, perfectly, 100% okay to step outside the bounds of what "society decides" when society has committed a major fuckup. I'd go so far as to say it is one's social duty. And as to "fault"? That lies squarely on society's doormat.

          And "fuckup" is precisely the case whenever society, be it writ large or small, interferes with informed personal — or consensual — choice. It's also notable that it has seriously fucked up WRT actually determining what "informed" means in any reasonable sense of the word. Crossing some magical age line doesn't magically confer competence in decision making any more than it confers the ability to operate a motor vehicle or an aircraft. The age line in the sand is a start, admittedly — but in about the same way a mud pie is a start on a soufflé. Only in this circumstance, the cooks don't have the excuse of being four years old.

          Society is great when it works towards a common good. Those efforts should be supported. I do support them. But to give carte blanche to... whatever... just because a rule/law got made? No. At least, not until they stop making such inordinately stupid laws, rules, and social standards.

          And if individuals have any sort of right to choose, then providers (or other elements of the system) have the right to choose not to provide.

          What is that, a variation on "Corporations are people"? You can't skip from personal/consensual choice to generic "other elements of the system" as if they were in any way equivalent. They aren't. Nor should they ever be considered as such.

          Providers? As in individual providers? When it's a law, or a committee handing down lack of permission, or conversely forcing an action to be taken, it's not the provider deciding. But certainly, as the individual deciding to perform the therapy — or not — someone could certainly decide that they didn't want any part of such a thing. Case in point, I had a surgeon refuse to perform a double hernia repair on me because he thought I was a poor candidate, health-wise, for anesthesia. I was perfectly okay with that. Someone else did it instead, someone who valued my attempt to improve my quality of life more, and was less concerned with her own statistics, and it worked out just fine. Turned out she had better stats than the other guy anyway, which I have always found somewhat humorous. Or maybe that's why... maybe he was just not as competent, and knew it. Anyway...

          There may be a hidden assumption in what you're saying there in that you could be suggesting that there would be no providers of, for instance, risk-laden, early-days genetic therapy that is intended to deal with some horrible genetic problem were it permitted in the first place. If that's the case, then the existing evidence is all we need to look at. We have already seen such therapies offered, and executed. Which puts paid to that idea, if indeed that was anything close to what you were implying, which it certainly may not have been. 😊

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          • (Score: 2) by All Your Lawn Are Belong To Us on Thursday June 13 2019, @03:32PM

            by All Your Lawn Are Belong To Us (6553) on Thursday June 13 2019, @03:32PM (#855169) Journal

            Yes, I agree with you absolutely that when society fucks up people have an obligation to resist. Society is capable of establishing malignant positions and actions. Society is also capable of correcting itself, as many of the things you've mentioned no longer exist. Society changes. The current provision of medical ethics isn't one of those times, however, and unless I missed something you've established no grounds as to why procedures whose safety and efficacy haven't been established should not be stopped as a matter of law. As to the specific of people dying while experimental procedures are available that might help.... there are avenues for this as well, where procedures are streamlined as much as possible when the potential benefits outweigh the risks of experimentation. Again, this doesn't seem to be one of those times. The current system exists because too many people got hurt by people just deciding, "yep, that's ok!"

            No, I wasn't talking about corporations yet. I fail to see by your standards why the first doctor's behavior in denying you the surgery is acceptable. Did he not violate your rights by not providing the therapy you had wished for? Why was that action acceptable to you? I'm going to move to making a hypothetical of your situation for just a second. Your exact case, but the patient died during surgery because of the anesthesia. In postmortem a dozen other surgeons uphold that the first surgeon judged the situation correctly no surgeons but the one who performed it are willing to stand up and say the patient was medically fit for surgery, whose fault would the patient's death have been both morally and in law? Herniation is interesting, by the way, because I just saw a lawyer's ad within the last week trolling for persons who had complications from double mesh surgeries..... but I digress. (And, out of hypothetical, I am glad you did get a second opinion and that the surgery did work well for you!)

            Aside from that, the reality is that we restrict the usage of certain titles in society. Maybe everybody should just be able to call themselves a physician if they want to in your worldview? (I realy don't know and I'm not trying to put words in your mouth. I'd like to know how professional regulation sits with you). But the way things are now there are professions that in order to assume the title the invidual must fulfill certain requirements. Society in the form of law sets those standards. And part of those standards is that one upholds and participates in the systems that are established. That includes standards of care and commitments to ethics. Are there times to buck it? Yep. But the practice of medicine, like that of law, is one where enough damage is caused by individuals that it takes systemic control to provide overall benefit. And the controls of medical ethics have been established because of failures like Tuskeegee. And because less than a century ago there was no advocacy for informed consent but rather that it was up to the learned to decide what was best for the patient and the patient had no say. The same system that brought you informed consent also brought the control of IRB's. And that's not a bad implementation of the system.

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