SoylentNews is people
SoylentNews
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
(Score: 2) by All Your Lawn Are Belong To Us on Tuesday June 11 2019, @08:21PM (5 children)
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.
This sig for rent.
(Score: 2) by fyngyrz on Wednesday June 12 2019, @06:50PM
Please see my reply to the other poster, where I address incomplete information. Thanks.
--
An apple a day keeps anyone away.
If you throw it hard enough.
(Score: 2) by fyngyrz on Wednesday June 12 2019, @06:58PM (3 children)
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.
--
Diapers and Politicians should be changed often.
Both for the same reason.
(Score: 2) by All Your Lawn Are Belong To Us on Wednesday June 12 2019, @08:45PM (2 children)
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.
This sig for rent.
(Score: 2) by fyngyrz on Wednesday June 12 2019, @11:15PM (1 child)
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.
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. 😊
--
Any pizza can be a personal pizza if you believe in yourself.
(Score: 2) by All Your Lawn Are Belong To Us on Thursday June 13 2019, @03:32PM
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.
This sig for rent.