Apparently the edit made him totally lactose tolerant for over a year and now he has very mild lactose intolerance. He says he hasn’t redosed because he wants to improve the plasmid (I think that’s the right term, BUGFIX probably isn’t right) before he takes another run at it.
Here’s his update video from last year on that endeavor. https://www.youtube.com/watch?v=aoczYXJeMY4
He really is doing some neat stuff though. He’s inspired me to do some small bio hacking experiments and it ALMOST makes me want to go back to college.
Cystic fibrosis significantly impacts gut function and many people with it do poorly with dairy products. I could see this and/or some variation of this being valuable therapy for the CF community while we wait for better answers.
Although best known as a deadly lung disorder, the impact on gut function is a major problem that just gets less press but is something people with CF and their loved ones fret about a whole lot. I think if you could do something to improve gut function fairly quickly and semi permanently, you would likely reduce a lot of their other issues as well because people with CF are typically underweight, sometimes severely underweight, and their chronic malnourishment is a major underlying source of their inability to fight off infection.
That's because it has barely begun to become viable IRL while science fiction writers have been using it as a convenient punching bag for decades -- without ever stopping to ask if they should.
https://en.m.wikipedia.org/wiki/Tuskegee_Syphilis_Study
https://encyclopedia.ushmm.org/content/en/article/nazi-medic...
https://pediatricsnationwide.org/2019/11/25/a-major-mileston...
And this source agrees with your statement:
The triple therapy, known as Trikafta, could effectively treat 90% of people with cystic fibrosis.
https://pediatricsnationwide.org/2019/11/25/a-major-mileston...
When I was on CF lists, I was hearing that the first drug in this class that had recently come out only helped five percent of people with CF (I was specifically hearing that it helped people who were double F508del and that was only five percent of all CF patients, IIRC) at a cost of at least $250k annually, so "if you can afford it or live in a country that covers that for you."
I was also hearing people say that some of the stats were dummied up and exaggerated because so much money was at stake.
I left all the CF lists years ago. The figures I'm seeing today don't fit with what's in my head and I don't know how to sort out what's true and what's PR nonsense and it doesn't really matter to me personally. I and my son with CF are both off all drugs and have lived on very little money for years.
Good for them. I'm sure this makes me even more irrelevant, "crazy" and stupid in the eyes of the world than I was already. Which is no big deal. I don't really care. I'm just leaving this comment because I asked you for a citation and then found my own and deleted my comment.
I don't want people to think I'm being a weasel or anything. The articles I'm finding seem to agree with you. I don't know what to make of that and it's not really relevant to my life. I will never have the money for these drugs and don't really care.
Have a good day.
Imagine if we had the scientific process about literally every aspect in human life since the dawn of civilization? We'd still be making bricks with straw, manure, sand, and water because there wasn't a government sponsored test of the quality of "Roman Cement" therefore we should not use it. Some of these people who criticize a lot of science do so just for the sake of disputing it. It's a good thing this stuff happens. The more anecdotal evidence we have, the more likely it can be subject to legitimate scrutiny and understand certain pitfalls that these individuals encountered and why. Just telling these people "you're stupid, it's bad for you!" is an ultimate waste of time and just stagnates data collection.
If you make germline edits, this does potentially impact others - you can have children who inherit the edit. They don't have any choice about that (depending on the edit they might randomly not receive a copy of the edited material, but that's luck) and its consequences in them may be undesirable even if the outcome for you, an adult, was fine and anyway your choice.
EDIT: and preventing young women from choosing sterilization.
For abortion, you can claim it impacts others both ways, are you impacting a new born from having its life, or are you preventing a yet to be born child from having a troubled life, and saving family, parents and society its burden.
For a vaccine, are you putting others at risk of a disease by not taking the vaccine?
For bio-hacking, are you possibly creating dangerous virus or bacterias that could harm others, are you making modifications to yourself which will put a tole on the medical system if you later need assistance or special treatment if you mess up, etc.
This is the same reasoning with drugs often, will your modified behavior cause harm to others if you consume them?
Etc.
None of this is black and white, but I think having these discussions on "what harm to others it can cause" is justified.
The first problem is that you are claiming that the child's body is the woman's body. It isn't and you know that. You know that is it an entirely distinct human being with it's own DNA, etc, etc. In order to justify abortion, you would need to argue that murder (which is the direct, intentional killing of an innocent human being) is justifiable. The logical consequences are devastating. For example, if murder of the most innocent, powerless, dependent, and vulnerable, by those with power over them no less, becomes justifable, then it becomes impossible to argue for the legitimacy any human rights whatsoever. You can't just make up moral principles out of thin air or assign arbitrary boundaries to them according to taste.
The second problem is that this logic seems to put the cart before the horse. In other words, you've decided that abortion is a right axiomatically and you've decided to dismiss anything that would undermine that belief. But the moral acceptability of abortion is not axiomatic and must be judged according to prior moral principles.
"This is exactly the logic conservatives use with the Covid Vaccines but because liberals "know what's good for everyone," people shouldn't be allowed to make the "my body my choice" when it comes to a vaccine."
See my first point above. Here conservatives are indeed speaking of just their own bodies, so this is a false equivalence.
What makes us human beings is our personalities, our brains. Chop off my hand, I'm still me. Destroy my brain, I'm deceased regardless of how long you keep my other organs going.
A fetus does not become human, IMO, until it can have a personality and sentience. Women have the power to create without consent of the created; the power to destroy their not-yet-human equally lacks the consent of the created. If the latter is prohibited than so should the former.
From a societal view, we have enough people. Every way to support people consensually choosing to not have children should be encouraged.
You know that it isn't entirely distinct, it is inside and completely dependent upon another human.
> "In order to justify abortion, you would need to argue that murder (which is the direct, intentional killing of an innocent human being) is justifiable."
How do you feel when a woman has a miscarriage? The child is dead, the mother's body deliberately killed it. Is she culpable? Is it different if her brain cells are involved in the rejection of the child? Isn't that you assigning arbitrary boundaries according to taste?
There have to be arbitrary boundaries, the universe is a single thing, the idea of there being separate things inside it is a human convenient fiction, it's not real. The boundaries between things are fuzzy and disappear the closer you look at them. There's "just" atoms and energy, everything else is concept, if we want morals in the universe we have to make them up, and if we want them to apply to people, we have to make those up too.
I think it's pretty obvious that right implies morally acceptability. You can't claim to have a right to something evil. (The reverse is not true. It is morally acceptable to own a Tesla, but you don't have the right to one.) Alterations can be harmful and any harm that is not a justifiable side effect is by definition immoral. That it's your body does not somehow negate the immorality of self-harm. Indeed, direct self-harm is even worse morally than harm of others because it is in direct opposition to one's own good (arguably, harm of others is also a form of self-harm, specifically harm of one's character and will and habitus, of one's intellect because of the harm of one's reasoning faculties it entails, and harm of the common good). So you cannot say you have the right to self-harm. This is just a strange consequence of the incoherent ideology of absolute autonomy.
Now, if you have, say, a defect in your body that is preventing the proper functioning of your body, then we may correct this defect through intervention. This is restorative, that is, it seeks to restore the function due to the body by virtue of how it ought to function. This is the basis of medicine.
Another false view that can nudge people toward the view that any modification is acceptable is metaphysical materialism, also incoherent. In that case, crude metaphors between artifacts and living things are elevated to the status of the truth and since it doesn't matter what we do to an artifact per se. We can modify a computer any way we wish because there is no fact of the matter about what a computer is or how it should be apart from human intent. It is just a collection of things arranged in a particular way incidentally that puts them in a series of incidental causal relations, but there is no inherent tendency for these things to exist in these relations and no accounting for one in terms of the others except through the lens of human intent. Living things aren't like that.
I'm in favor of drug use (at least almost all), tattoos, body modifications, trying experimental medicine, everything that affects your body. I can see drawing the line at "doing this thing could become a contagion so you can only do it in BSL-4 isolation". But it's your body, your life, you want to spend it stoned or a voluntary amputee or whatever so long as don't take from me, then you should be free to do so.
If you couldn't gouge out your right eye and cast it from thee (Matthew 5:29), would you still have freedom of religion?
> "So you cannot say you have the right to self-harm. Now, if you have, say, a defect in your body that is preventing the proper functioning of your body, then we may correct this defect through intervention. This is restorative, that is, it seeks to restore the function due to the body by virtue of how it ought to function. This is the basis of medicine."
What about vaccination and such where the intent is to cause a small amount of harm now, to prevent a problem you don't have - and may have never faced in any future. This is not restoring a defect, it's augmentative and preventative. Do you not have the right to cause that small harm? And yet that's in opposition to your "direct self-harm is even worse morally than harm of others because it is in direct opposition to one's own good". It's in alignment with one's own good. So, for example, are the torn muscle fibres when weight lifting, or the buildup of lactic acid causing muscle burn when running, or working through the night with no sleep in an emergency.
Less seriously, piercings for jewellery are self-harm and for one's greater happiness in appearance. Do people have no right to wear small pointy uncomfortable high-heel shoes? Is that immoral?
> "I think it's pretty obvious that right implies morally acceptability."
I think it's pretty obvious that there isn't a single "moral acceptability" which everyone agrees on. For example some have the right to eat animals and others consider that morally inacceptable. Some US states have different rules on public nudity than others, and some groups of people have different opinions on the morality of it.
> "You can't claim to have a right to something evil"
Not sure I follow this one; you can't really have a right to murder others, but in the sense of self-harm is it really "evil" to hurt yourself? What is evil and also doesn't involve harm to anyone else?
> "For example, do you have the right to lobotomize a perfectly healthy brain?"
One could argue whether a "perfectly healthy" brain would choose to lobotomize itself, but let's say it does - why do you say that's "very problematic"? The main objection I have - assuming the person is considered sane and healthy - is who is going to pay for the care afterwards, i.e. the harm rolls over onto others and is not purely self-harm. If you could sign that away - it's basically a slow and horrible suicide method.
I think it's pretty obvious that right does NOT imply moral acceptability, and that you can have a right to something evil. In our societies, we have a great deal of disagreement about what things are morally acceptable/permissible. For a good liberal society, we may allow many things that we think are actually immoral, even evil. You need look no further than, say, the religious arena (including atheists) for such disagreement. People disagree about the moral acceptability of worshiping different gods (or about worshiping any 'gods'), calling someone an asshole, teaching your children one thing or another about sex, about engaging in particular sexual acts, about giving charity (or refraining from giving charity) to certain causes, and so on.
We grant people rights to do certain things (and I'm glad we do), but that does not entail that those things are therefore morally acceptable/permissible. You have a right to do them, but maybe you ought not.
The technical requirements to this kind of limit the number of people that are going to really mess themselves up. I would be more worried about people accidentally releasing edited bacteria or viruses.
From what I understand it’s hard to order the sequences of DNA or RNA you’d need for this without someone noticing. It’s probably not impossible, but not something anyone is going to bungle into.
Anyway, Maybe a few years ago the barrier to entry was too high for most people but that is so not the case anymore. Even just this year a friend sent me a link to a $2000 gizmo that was about the size of a pack of gum that could do desktop sequencing. Generating your own custom DNA in your bedroom is considerably harder (but not impossible) but it is not at all difficult to order a custom sequence from a half dozen different retailers. The file you send them is just a big chunk of a few letters. It’s assembly code with no comments (yes I know folks do put in comments in text sometimes and sometimes biologically but just like always comments lie more than not), they functionally cannot be checking for what it could do if what you’re working on is even remotely novel. For the price of a playstation you can have it delivered to your door next day air.
There are very real risks here for our entire planet. Possibly one of our largest risks. To hide behind “it’s too difficult for a malicious actor” is not helpful. I think genetic literacy is maybe the only thing we all can do as we might be entering very weird territory as a closed system that has a bent towards global narcissism and self harm.
Something that gives me some comfort is that to be good at it you really have to do a gross and difficult deep dive into how all life works and I think there are very few people that could do that and still feel like it’s ok to do harm at even a small scale. The things we are going to see in the next few years will be pretty fucking weird. I guess when you get down to this level, the only thing to have is something like faith. Eeeek.
What makes me feel alright is that I think to do some damage is not a technical or money issue but an issue with taking a dive on the closest thing we have to the meaning of life and I'd hope that that study would be the sort of thing that keeps someone from being the worst kind of monster. I mean, we have a ton of tools out there to be awful, why this?
I guess what I'm saying is that to look at this set of problems and say "someone else probably has it handled" or assume anything we know is even slightly predictive of the future is silly. I think it's important for those that care to get an understanding of biology as we are now at an unprecedented point in existence where there's just not a way to feel too comfortable. Added benefit, the more people that get that understanding the closer we might get to yeast that eats plastic or mushrooms that make insulin.
If writing software required being a licensed engineer then you would without a doubt see reactions to open source, calling it deeply irresponsible and dangerous.
Amazing and alarming what a smart and dedicated person can do with limited funds.