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Chinese Scientist Who Gene-Edited Babies Fired by University (reuters.com)

A Chinese scientist who created what he said were the world's first "gene-edited" babies evaded oversight and broke ethical boundaries in a quest for fame and fortune, state media said on Monday, as his former university said he had been fired. From a report: He Jiankui said in November that he used a gene-editing technology known as CRISPR-Cas9 to alter the embryonic genes of twin girls born that month, sparking an international outcry about the ethics and safety of such research. Hundreds of Chinese and international scientists condemned He and said any application of gene editing on human embryos for reproductive purposes was unethical. Chinese authorities also denounced He and issued a temporary halt to research activities involving the editing of human genes.

He had "deliberately evaded oversight" with the intent of creating a gene-edited baby "for the purpose of reproduction," according to the initial findings of an investigating team set up by the Health Commission of China in southern Guangdong province, Xinhua news agency reported. [...] The Southern University of Science and Technology (SUSTech) in the city of Shenzhen, said in a statement on its website that He had been fired.

62 of 114 comments (clear)

  1. Good by 110010001000 · · Score: 2

    Maybe he can get a job at Google or Facebook or whatever tech company that puts profits and fame above humanity.

    1. Re: Good by saloomy · · Score: 3, Interesting

      Unethical? I'm not so sure. What if gene editing is the only way we come up with to defeat some of the worst diseases in humanity? Cancer, ALS, Diabetes, heart disease. Was he wreckless? Sure. But is there a balance to be struck between the snails pace of government approved medical research Ana what he did? I think so.

      How many lives would have been saved if we had less stringent rules in place for drug research? I read that the US caused tens of thousands of deaths because it hadn't approved beta-blockers for use in the public.

      I'm all for safety for drugs reaching the public, but surely we can quicken the pace in the research field far before it becomes publically available?

    2. Re: Good by froggyjojodaddy · · Score: 5, Interesting

      I think the question of ethics comes into play because of what you're doing at the gene level rather than abiding by established rules of testing and governance.

      When I think of unethical behavior and gene editing, I think of things like:
      - Modifying genes so that certain aesthetic characters are artificially promoted (e.g. blue eyes, blonde hair)
      - Certain skin tones (is that even possible? I dunno)

      Things I would NOT consider unethical: - Eliminating diseases (sickle cell, popensity for cancers etc.)


      ..... you know, I just spent some time asking myself why I consider the first two unethical and I can't come up with an immediate rational explanation. Let's say 500 years from now, everyone had green eyes, brown hair, and a lighter skin color and maybe even spoke one language. We would be a completely homogeneous society. Racism would be all but eliminated.

      Is that a bad thing? I'm a person of color and I'm not so sure it's a bad thing (tm).

    3. Re: Good by ArchieBunker · · Score: 4, Insightful

      There is one reason for the FDA having slow approval, thalidomide.

      --
      Only the State obtains its revenue by coercion. - Murray Rothbard
    4. Re:Good by jellomizer · · Score: 1

      That is assuming that he would be allowed to leave China.
      China has high-tech public shaming system. That uses facial recognition to let everyone around you know that you have somehow shamed China, thus you should be shunned. Businessmen have been put on this list for things like late payment of their bills.

      Being the high visibility of this guy got, he is up for a tough life now on. China may not give him a ticket out of the country, because they would just want to continue the shaming.

      --
      If something is so important that you feel the need to post it on the internet... It probably isn't that important.
    5. Re: Good by DogDude · · Score: 1

      But is there a balance to be struck between the snails pace of government approved medical research Ana what he did?

      Government approvals have little to do with it. The science isn't there yet. Every scientist I know thought that what he did was wildly inappropriate. He is a bad scientist.

      --
      I don't respond to AC's.
    6. Re: Good by sycodon · · Score: 1

      There is no doubt that his actions were not only sanctioned, but explicitly supported...until all the blow back from the world's scientific and ethics communities.

      All this is just Xi Jinping cleaning up something that turned out to be an embarrassment instead of the triumph he was expecting.

      People seem to forget or ignore the fact that China is an Authoritarian Dictatorship.

      --
      When Fascism comes to America, it will call itself Anti-Fascism, and tell you to give up your guns.
    7. Re: Good by jellomizer · · Score: 1

      Gene editing itself isn't unethical. However unapproved and non-monitored experiments on humans is. Lets say I have a hypothesis that whisky can cure cancer, so I just go start injecting people with whisky and track them over a few decades and see if they get cancer, that would be unethical. However I use this hypothesis, go threw proper channels, start my studies on extracted cancer cells, understand what is happening, then with animals, then if that seems to be working correctly with approvals, peer review and backing by my employer, then I can go onto human trials. Or more likely it would show it as a failed hypothesis earlier on, and no one will get hurt.

      Science isn't some new age magic. It is a rigorous process used to help learn and understand. Is it perfect? No. But it is better then the other alternatives.

      For every Eureka! from a single guy who made a discovery and works right from the start. They are millions of others who are no less smarter then him, who did something that just didn't work. Gene editing humans, while may work, still isn't in that phase of the processes. Skipping steps could hurt people and cause damage.

      See ST:TNG Ep 116 "Ethics"

      --
      If something is so important that you feel the need to post it on the internet... It probably isn't that important.
    8. Re:Good by jwhyche · · Score: 2

      I thought the Chinese government was going to execute his ass.

      --
      I read at +2. If your post doesn't reach that level I will not see or respond to it.
    9. Re:Good by Nethemas+the+Great · · Score: 1

      So it is more ethical to have in your hands the tools by which to save lives but sit on them because using them would make some bureaucrats and religious leaders are uncomfortable? I'm sorry, but I cannot subscribe to that philosophy.

      --
      Two of my imaginary friends reproduced once ... with negative results.
    10. Re: Good by saloomy · · Score: 1

      Since when is science not achieved though the scientific method? Pose a question. Make a hypothesis. Conduct an experiment to test your hypothesis. Analyze your results. Conclude.

      What he did is unethical because "the science isn't there yet"? The science will never be there unless we learn through the scientific method.

    11. Re: Good by Nethemas+the+Great · · Score: 1

      The time to get a drug to market is far less affected by safety considerations than you would expect. More over, in most people's minds I would expect that context would make a great deal of difference between when "slow and confident" or "fast but uncertain" are considered preferred. You know, common sleep aid, and potentially life saving cancer therapy.

      --
      Two of my imaginary friends reproduced once ... with negative results.
    12. Re: Good by saloomy · · Score: 2

      I understand the ethical concerns, but to say "because it doesn't follow the scientific method" is horse shit. You'll have to try again. For all those who tried something that didn't work, no one told them "what you are trying is unethical".

      This guy tried some experiment to test a hypothesis. So long as he conducted his experiments following the scientific method (something even non-scientists are taught in the 6th grade), then you can't chastise him on "scientific" grounds.

      Furthermore, if he didn't get consent of the parents (mother?), then sure. You can't experiment on people without consent. IF that was the case, I agree with you. It is unethical. Assuming for the moment, that the participants were informed and consented, there is nothing wrong with what he is doing.

    13. Re: Good by saloomy · · Score: 1

      That is a terrible reason. I'm not saying you are wrong, just commenting on that as justification for keeping potentially life-saving drugs off the market. There can be a cost to safety where the cost outweighs the benefit.

    14. Re: Good by Applehu+Akbar · · Score: 1

      Unethical? I'm not so sure. What if gene editing is the only way we come up with to defeat some of the worst diseases in humanity? Cancer, ALS, Diabetes, heart disease.

      Yes, and China is generally more aware of the long-term need for edgy tech like this than the US and especially Europe. But intentionally faking approvals to rush changes into the human germline is the kind of ethics breach that if anything goes wrong can easily backfire against the technology as a whole. Furthermore, Jiankui's edit was not knocking out one disease-causing point mutation, the obvious first goal of a germline edit. Instead he blocked a major gene that normally powers parts of the human immune system.

    15. Re: Good by mysidia · · Score: 1

      Modifying genes so that certain aesthetic characters are artificially promoted (e.g. blue eyes, blonde hair)
        Eliminating diseases (sickle cell, popensity for cancers etc.)

      Actually... BOTH of those things are in the same camp; I mean you could say "not having ideal beauty" is a disease that most of the population suffers, who gets to say sickle cell, etc, are the only special impediments that gene editing an be used to help with?

      You intend to alter genetic material for one reason or another to do what in someone's opinion will improve the quality/longevity of life (E.G. Eye/Hair color affecting social status - people with certain appearance or traits more likely to get wealth/certain jobs and live longer as adults) - Healthy people without what we currently call a disease more likely to live longer, Etc --- in either case, something can go wrong if you administer gene editing and have not sufficiently verified/tested that it will succeed before attempting: like you cause another disease or trait that harms the embryo besides what you were trying to edit.

    16. Re: Good by mysidia · · Score: 1

      However unapproved and non-monitored experiments on humans is.

      Ok... so who is the representative of "god" that gets to decide Yes/No whether an idea can be tested on humans, and where the heck is the proof that they've been appointed as the person that gets to decide its morally OK to inject someone with stuff that humans have never been injected with before?

      Because the fact is, there's always gotta be a first time for any successful treatment.

    17. Re: Good by 1ucius · · Score: 1

      IIRC, the ethical issue here relates to informed consent and "is ready for human trials," not because it's gene editing per se.

    18. Re:Good by hackingbear · · Score: 1

      The Western media should also tell you Iraq has WMDs.... oh, they did so already.

    19. Re: Good by Macdude · · Score: 2

      I'm all for safety for drugs reaching the public, but surely we can quicken the pace in the research field far before it becomes publically available?

      I'm not sure the victims of thalidomide would agree with you on that one.

      --
      "Grab them by the pussy" -- President of the United States of America
    20. Re: Good by Impy+the+Impiuos+Imp · · Score: 1

      Dictatorships ape capitalist freedom by giving people who make it look good on the world stage upgraded living conditions for their families. This applies to science and athletics.

      This guy was geeked until the blowback that embarrassed the same system that minutes before was to reward him.

      --
      (-1: Post disagrees with my already-settled worldview) is not a valid mod option.
    21. Re: Good by Impy+the+Impiuos+Imp · · Score: 1

      In 500 years everyone will have 37.5 penii and vajayjays, all aligned for one 4 hour ejaculation.

      Every prediction in that is probably an underestimate.

      --
      (-1: Post disagrees with my already-settled worldview) is not a valid mod option.
    22. Re: Good by Impy+the+Impiuos+Imp · · Score: 1

      And the one thing thalidomide proved was pushing it into pregnant women should be done with more care.

      When the down side is death of middle-aged people from cancer and heart disease, the precautionary principle is trivially more murderous than World War II.

      But deaths in front of the camera weigh more than millions of early deaths but-for inventions that were slowed down by regulation.

      The math is brutal.

      --
      (-1: Post disagrees with my already-settled worldview) is not a valid mod option.
    23. Re: Good by angel'o'sphere · · Score: 1

      - Modifying genes so that certain aesthetic characters are artificially promoted (e.g. blue eyes, blonde hair)
      The problem is that not everybody finds the same things aesthetic. My GF always wants to colour her hair blond. And wants me to encourage her to do it. I told her: one month in a year is ok ...
      Seems the concept that I fell for a black haired woman and that I like to stay her black is a bit to complicated for her :P

      --
      Cost free eBook I read (by iBook/Kobo/Amazon/ObookO/Gutenberg etc.): "The Green Odyssey" by Philip Jose Farmer.
    24. Re: Good by angel'o'sphere · · Score: 1

      There is no doubt that his actions were not only sanctioned, but explicitly supported...
      Of course there are doubts.
      I'm an example of doubt. Why would anyone (explicitly) support this?

      People seem to forget or ignore the fact that China is an Authoritarian Dictatorship.
      If it was supported it would have been in a big project, and he would not been fired now but promoted.

      --
      Cost free eBook I read (by iBook/Kobo/Amazon/ObookO/Gutenberg etc.): "The Green Odyssey" by Philip Jose Farmer.
    25. Re: Good by ewibble · · Score: 1

      Even if we where all green eyed, brown haired copies of each other we would form ourselves into groups and be biased against the other, its called the minimal group paradigm (https://en.wikipedia.org/wiki/Minimal_group_paradigm).

    26. Re: Good by AlwinBarni · · Score: 1

      Unethical? ...

      Because technology is not proven to be safe yet and now there are two girls, who might die early due to e.g. cancer. CRISPS Cas9 does it's jobs, but sometimes does more than indented cutting off more then programmed.

      Another issue is that this was done without proper procedure and completely not needed for the girls (they father has HIV, but there are medications now to keep the virus from reaching infection level not to mention that HIV is not easy to be transmitted anyway) - other diseases like e.g. Huntington's disease would be a different story.

      And final argument is that the edited gene plays also important function in brain development, though, to be fair there are people living without this gene.

  2. Why? by Shaitan · · Score: 2

    Don't get me wrong this is a line we couldn't ethically cross but since he already crossed it... we should see the results and gather the data. Slap an ankle bracelet on him and have the facility take over his expenses so the lights stay on but he doesn't profit or have someone else pick up his work.

    There are potentially some amazing advances that could come from this line of research.

    Also, do you honestly think the likes of Putin and other regimes don't have underground activities of this sort ongoing but obviously can't publish. The genie is out of the bottle. I would be surprised if the US military doesn't have secret programs along these lines going already.

    1. Re:Why? by Shaitan · · Score: 1

      "I don't think so. This is no different than genetically engineering crops. Eliminating disease, making people smarter, taller, or whatever is perfectly fine. And I think gene editing is the only way the human race can advance beyond our ape heritage."

      We don't understand what we are doing well enough. One day we might crack the code well enough to reliably do those things but we are nowhere near that. At present what we are doing is more like gathering up a bunch of pottery and smashing it up and making mosaics. Most of the field runs on the assumption they don't need to understand how it works, they can just use the pieces that are already out there and combine them in new ways. They are half right, there is a huge library of genetic information already out there but humanity definitely needs to understand how it works. The individual doing the combining won't need to in the end but only because they are working from rules and primitives defined by people with a better understanding.

      Look at STDs already in the wild and our success at getting rid of them. We can't even stop the ones that kill off the people who get them. Changes like this could sterilize whole populations, changes like you suggest could have impacts that don't surface until several generations later. Not everything happens right away you know. Almost every gene we study enough turns out to be connected in a complicated web with other biologic functions.

      Our understanding of the effects of what we are doing and what we are doing is probably on par with the drug industry circa 1780ce.

      "This is no different than genetically engineering crops."

      And would you fill that way if you were the subject rather the subsequent beneficiary of the experiment? Make no mistake, this is a well established phenomenon with medicine. There is a very real slippery slope and in the end it isn't you who will decide what you or your subsequent offspring are subjected to but the interests of "the greater good" which might be contrary to the interests of nearly every actually individual who makes up the greater population. People all too quickly lose sight of the fact that the group is nothing but a collection of individuals and the logic you support screwing over an individual who isn't you can and will be turned against you sooner or later.

    2. Re:Why? by Shaitan · · Score: 3, Insightful

      Ugh, it would be really nice if slashdot had an edit function.

      "I don't think so. This is no different than genetically engineering crops. Eliminating disease, making people smarter, taller, or whatever is perfectly fine. And I think gene editing is the only way the human race can advance beyond our ape heritage."

      We don't understand what we are doing well enough. One day we might crack the code well enough to reliably do those things but we are nowhere near that. At present what we are doing is more like gathering up a bunch of pottery and smashing it up to make mosaics. Most of the field runs on the assumption they don't need to understand how it works, they can just use the pieces that are already out there and combine them in new ways. They are half right, there is a huge library of genetic information already out there but humanity definitely needs to understand how it works. The individual doing the combining won't need to in the end but only because they are working from rules and primitives defined by people with a better understanding.

      Look at STDs already in the wild and our success at getting rid of them. We can't even stop the ones that kill off the people who get them. Changes like this could sterilize whole populations, changes like you suggest could have impacts that don't surface until several generations later. Not everything happens right away you know. Almost every gene we study enough turns out to be connected in a complicated web with other biologic functions.

      Our understanding of the effects of what we are doing and what we are doing is probably on par with the drug industry circa 1780ce.

      "This is no different than genetically engineering crops."

      And would you feel that way if you were the subject rather the subsequent beneficiary of the experiment? Make no mistake, this is a well established phenomenon with medicine. There is a very real slippery slope and in the end it isn't you who will decide what you or your subsequent offspring are subjected to but the interests of "the greater good." Those might be contrary to the interests of nearly every individual who makes up the greater population. People all too quickly lose sight of the fact that the group is nothing but a collection of individuals and the logic you support which screws over another individual will be turned against you sooner or later.

    3. Re:Why? by gtall · · Score: 1

      Yep, there's nothing the U.S. Military might not have a secret program for. I hear they want to put a micro-chip in your brain so that you can be told which fast food joint to frequent. It could happen right? Hell, they can do anything, even create wormholes on demand...and black holes, think of the black hole programs they must have...or...or...Dark Energy, do you think Joe Biden is moving entirely on his own power at his age?

    4. Re:Why? by Shaitan · · Score: 1

      Hardly but you know declassified documents disclosed under an FOIA request revealed the military TRIED to do most of the above and a link to coverage was posted on this very site just a couple days ago. The military controls almost all the US 'public' research spending.

      This isn't a crazy conspiracy, this is freely available and published technology.

    5. Re:Why? by Shaitan · · Score: 1

      "The big problem with "We don't understand what we are doing well enough" is that the "design" of evolved life is not decomposable. There are no clean boundaries between things, everything is emergent. So one small change here could have absolutely unpredictable consequences over there."

      Which is exactly why we should not be using ourselves to test on. One unpredicted error in the wrong place and we've wiped out entire species. Hell that risk is even real tweaking other things.

      Our best bet isn't really genetically engineering ourselves at all. Our best bet is gaining a complex enough understanding to synthesize an analog of ourselves. We'll use them as slaves for a few generations until we've got plenty of diversity and a decent enough translation for designer units. At some point we stop having offspring naturally (not exactly unimaginable, hell in Japan they are doing it already), we order a custom unit from a lab based on our own traits or not and within a few generations the version of us we engineered and have total understanding of IS the new us and the old evolved models will be out.

      There is no reason to rush out something we aren't ready for and risk our entire species to have things during our generation. Far better to be patient and do it right so that our civilization can persist.

    6. Re:Why? by Shaitan · · Score: 1

      "Would you be OK that you are forced to be in the study without any chance to contest the decision?"

      There is no requirement that the child be given no choice once they are able to consent. There is also no reason an advocate and court can't be used to represent their interests in the meantime.

      There is a reasonable middle ground here.

    7. Re:Why? by Dustie · · Score: 1

      I doubt " the likes of Putin " has worse labs than the US. At least in the US there's a history of these kind of projects - testing on unwilling or uninformed humans.

    8. Re:Why? by Shaitan · · Score: 1

      "At least in the US there's a history of these kind of projects"

      There is a pretty well established history for both actually. I'm certainly not claiming the US are the good guys vs Russia who are the bad guys, Putin, China, North Korea are all countries with a long public record of being bad actors and there is little to no credible dispute of that. People do dispute the US, especially on a US forum like this one. As seen by someone replying and trying to paint the suggestion as a crackpot conspiracy theory.

      Putin's crimes are just far more thinly veiled with a history of poorly covered domestic murder and death squads. The US on the other hand has aired much of its historical dirty laundry and so far has convinced the public of the "this is how we used to do things back in the wild west of history" dialog. Why people just blindly accept this is the past and anyone suggesting the US government has continued with business as usual is crazy and paranoid I don't know. Maybe it's just some very effective propaganda.

  3. He had "deliberately evaded oversight"... by Red_Forman · · Score: 1

    He has a really confusing first name for english readers.

    1. Re:He had "deliberately evaded oversight"... by novakyu · · Score: 1

      If it helps, it's pronounced differently from the pronoun "he".

    2. Re:He had "deliberately evaded oversight"... by Red_Forman · · Score: 1

      It doesn't help at all since both are written as "He", dumbass.

  4. Re:ppftt by Red_Forman · · Score: 3, Funny

    Forget super babies, can they make catgirls yet?

  5. Re:ppftt by jellomizer · · Score: 1

    Or hired by the Indian government to make a superior clone of Ricardo Montalban or Benedict Cumberbatch.

    --
    If something is so important that you feel the need to post it on the internet... It probably isn't that important.
  6. Re:ppftt by NoNonAlphaCharsHere · · Score: 1

    KHAAAAAAAAAN!!!

  7. Strange goings on behind the scenes by Anonymous Coward · · Score: 1

    He's group website had PDFs relating to the approval of his research. The wayback machine provides us with a handy view just before he announced his GM children and got silenced. Later that approval was retroactively withdrawn.

    https://web.archive.org/web/20181126212100/http://www.sustc-genome.org.cn/source/pdf/HarmoniCare-Ethics-English.pdf

    From what I can gather, this was a privately owned hospital providing "ethical approval" for government sponsored research. I find it hard to believe he was operating without somebody knowing about it - they recruited HIV positive fathers, got them to agree to participate with their partners, performed artificial insemination, applied CRISPR to the embryos, implanted them in the mothers, performed an abundance of testing during the pregnancies and sequenced the children. That's an awful lot of expertise and equipment to bring to bear.

    A report on their website indicates that the edits only took for one child, and there were quite a few off-target edits from the post-CRISPR repair, as well as evidence of mosaicism. That's one dodgy outcome! He did bad things, but I strongly suspect he was not the only one culpable here. Is he now the scapegoat for a much larger failure of oversight?

  8. Poisoning the well by burtosis · · Score: 1

    For probably as long as humans have been able to communicate, they expressed the desire to take on the traits of others around them. Strength, speed, looks, intelligence... But the scientific systematic understanding of the menutica involved. Early attempts became frustrated when nothing worked and more and more radical means were tested infringing on the well being of innocents while bringing no actual change of benefit. Obviously eugenics works, poodles aren't found in the wild, but attempting to force people to breed against thier will, for authoritarian purposes, dosent work out well for the obvious reasons and still the principles were not well understood. This has poisoned the well to the point common wisdom is any change is bad, even attempting anything is both fruitless at best and worse - just going to cause far more problems than it solves.

    But the reality is once these technologies become widespread and ubiquitous, effective and cheap, possibly even reversable as the tech matures, they won't fall under the original assumptions of why they are bad. I myself have a severe dietary condition, a delayed bleeding disorder, and nearly debilitating migraines and would definately allow these to be edited out of my children, it's not wrong and god helps those who help themselves. There is nothing inherently wrong with it as it is possible to form a moral framework. Eventually it will be possible to change things like skin and hair color, then likely even reversible at any age (including heritablity). Perhaps this will even be seen eventually as a positive thing, in a similar fashion to the Dr.Seuss story about how many stars on your belly denotes social status and they only wake up when the mobility between these states illustrates they are only skin deep.

  9. Reckless = unethical by Roger+W+Moore · · Score: 1

    Unethical? I'm not so sure......Was he wreckless? Sure.

    I am: being reckless with human lives is unethical.

  10. Re:ppftt by Areyoukiddingme · · Score: 1

    Forget super babies, can they make catgirls yet?

    That's the Japanese, not the Chinese. Or at least not so much...

  11. This guy was not fired for gene editing babies by AbRASiON · · Score: 3, Insightful

    He was fired for being dumb enough to admit it / being caught.

  12. Ethics aren't all they're cracked up to be by edris90 · · Score: 1

    we all know very well how this is going to work eventually somebody will completely ignore ethics and complete the research necessary on humans, will all condemned them while taking their research and going off very interesting. in the future will be built off that. Just like most every other major medical advance.

  13. Yes. Bad because by presidenteloco · · Score: 2

    as a monoculture, we'd all die of the same "potato blight" or similar.

    --

    Where are we going and why are we in a handbasket?
  14. Re: Genetic Medicine is NOT Unethical by ememisya · · Score: 1

    You make the assumption that we understand what we are doing. What are you going to do when some super virus mutates and only people with Toxoplasma gondii parasite in their brains survive it? Clearly all parasites are bad, why? Because it's right there in their names, "parasites". The conversation always comes to changing eye or hair color when talking about gene editing (you read those stories right? I know me too) but do you realize how profound a change that is even to simply change someone into a blonde from a brunette? You're talking about a baby who is the product of millions of years of fighting to see which genes even survive to get their protein and at the end of the battle you're just going to Dumbledore the victor? Hell there might be that single moment where this one person just digs green eyes, but because of your editing they never fall for each other and that one meiosis which would have created the first ebola immune baby never comes to be. Not to mention the psychological effects. While we have something called surgical addiction, you want to allow gene editing on humans? How long until a baby is killed because the parents thought it didn't turn out the way they wanted and they wanted a new one to edit properly this time and they blame the doctor? Fine you say, lets just focus on itemizing the pros and cons, okay. Some of the cons include 7 billion unedited humans. Accidents beyond our current understanding, (read whoops, sorry about the tumor) people must live with much like accidently getting their babies penis entirely chopped off during circumcision, but with a whole new fuck up vector. A whole new level of discrimination (see GATTACA). You know why the future is the future? Because it's full of unknowns. How many FDA approved medications turned out it actually killed you? It was the best they could do at the time remember?

  15. Re:ppftt by inking · · Score: 1

    I see a man of culture. You like your catgirls like you like your wine, do you?

  16. In evaluation-driven U.S. culture by Latent+Heat · · Score: 1

    A student doesn't need to shimmy up to the window to turn in a late assignment because the instructor will accept a late assignment, on any excuse offered or for no excuse at all?

  17. Disability benefits by tepples · · Score: 1

    so who is the representative of "god" that gets to decide Yes/No whether an idea can be tested on humans

    My first guess is the parts of the government that pay for disability and medical entitlements. They may have to cover lifelong costs of the results of the experiment.

    1. Re:Disability benefits by mysidia · · Score: 1

      My first guess is the parts of the government that pay for disability and medical entitlements.

      Really, really bad idea. The people likely to volunteer for human testing are those that already have a major condition that causes disability and limits lifespan. The vested interest of those parts of the government, would be that these people die as soon as possible, so they would probably block research into possible cures that could extend lives.

      Morals should NOT be defined by money. As for support costs....
      No patentability rights or profit rights should exist for a cure, except to the party who was liable for the risks in
      case it harmed people during the human testing, other trials, and usage prior to approval.

      Those volunteering to be experimented upon should be required to carry adequate long term and short term disability and health insurance, so if they become disabled, they make the claim under their disability policy for full support,
      and those doing the experiments ought to be required to sign statements assuming liability and carry adequate extra insurance.

    2. Re:Disability benefits by tepples · · Score: 1

      Those volunteering to be experimented upon should be required to carry adequate long term and short term disability and health insurance, so if they become disabled, they make the claim under their disability policy for full support

      Good luck finding parents willing to foot the bill for private insurance in case a child resulting from genetic engineering ends up with a disability expected to last the child's entire life. How much would that even cost?

    3. Re:Disability benefits by mysidia · · Score: 1

      How much would that even cost?

      Until age 18, supporting their child up to adulthood is the parent's responsibility, so the monetary value of the initial loss is $0.

      After adulthood: assuming the disability renders the person completely unemployable for the adult life, the loss over the years amounts to an annuity policy worth approximately $2 Million upfront.

      The average annual wages of a gainfully employed adult human to be distributed every year after adulthood up to the number years of a human's life expectancy
      at ~$4166/month growing by 2% per annum.

    4. Re:Disability benefits by tepples · · Score: 1

      Until age 18, supporting their child up to adulthood is the parent's responsibility, so the monetary value of the initial loss is $0.

      With the exception of parents who qualify for benefits from social safety net programs, such as WIC, SNAP, CHIP, TANF, Section 8, school lunch assistance, and special education. Ethics assessment for human germline genetic engineering would include estimating how resulting children may end up draining these programs. Or are you anticipating a provision that disqualifies parents of children resulting from experimental genetic engineering from receiving these entitlements, analogous to the "Stop BEZOS" proposal?

    5. Re:Disability benefits by mysidia · · Score: 1

      Or are you anticipating a provision that disqualifies parents of children resulting from experimental genetic engineering from receiving these entitlements

      No... Those parent would be disqualified from participating in an experiment that involves them having a child.
      The researcher should require proof that the parents can financially support the child and maintain the requisite protective insurance
      policies before being allowed to participate in research that involves a parent becoming pregnant (whether or not the embryo was modified).

    6. Re:Disability benefits by tepples · · Score: 1

      The researcher should require proof that the parents can financially support the child and maintain the requisite protective insurance
      policies before being allowed to participate in research that involves a parent becoming pregnant

      Good luck proving that neither parent will subsequently lose a job. How much would private long-term unemployment insurance cost?

    7. Re:Disability benefits by mysidia · · Score: 1

      Good luck proving that neither parent will subsequently lose a job.

      At that point the issue has nothing to do with the research, and its the person's responsibility
      who represented that they were choosing to become pregnant and have a child anyways, however
      due to the hereditary disease risks they'd like to volunteer to participate in the research --
      ANY couple who decided to get pregnant for any reason would be in the same predicament
      regarding supporting the child, And the cost of the life-sustaining essentials to support a child are
      much the same whether the child turns out with a disability or normal full capacity -- if the parent
      claims to be productively employable,then they should be able to get and retain a replacement job,
      assuming the applicant is not lying.

    8. Re:Disability benefits by tepples · · Score: 1

      should be able to get and retain a replacement job

      How much does insurance to pay for retraining (note additional R) in case of job loss cost?

  18. fired & hired by sad_ · · Score: 1

    fired from the university
    hired by the army.

    --
    On a long enough timeline, the survival rate for everyone drops to zero.