'Biohacker' Who Injected Himself With DIY Herpes Treatment Found Dead (livescience.com)

Long-time Slashdot reader Okian Warrior quotes Live Science: The CEO of a biomedical startup who sparked controversy when he injected himself with an untested herpes treatment in front of a live audience in February has died, according to an email sent to Live Science. Aaron Traywick, the CEO of Ascendance Biomedical, was found dead at 11:30 a.m. ET on Sunday (April 29) in a spa room in Washington, D.C., according to a statement provided to Live Science by the Metropolitan Police Department (MPD) of the District of Columbia. Traywick was 28 years old. According to the website News2Share.com, Traywick was found in a flotation tank. Flotation tanks are soundproof pods filled with body-temperature saltwater that are used to promote "sensory deprivation."
Vice News reports that Traywick had "lost touch" with co-workers at his company more than four weeks ago, adding that "Disagreements over the company's direction and philosophical differences over how to best distribute its creations split the small startup."

MIT Technology Review reports that Traywick, "who had no formal medical training, was also planning to test an experimental lung cancer treatment that supposedly involved the gene-editing tool CRISPR. The therapy was to be offered at a clinic in Tijuana, Mexico, just a few miles over the U.S. border... An employee at the Tijuana clinic, International BioCare Hospital & Wellness Center, confirmed in a phone interview that doctors there were working with Traywick to set up the trial but won't be moving forward with it after his death...

"In December, the American Society for Gene and Cell Therapy issued a statement warning patients about unregulated gene therapies, saying such procedures are potentially dangerous and unlikely to provide any benefit."

Comments

Cause of death?

[arth1]

In a sensory deprivation tank, nobody can hear you scream...

Re: Cause of death?

[ravenshrike]

Because apparently a mike with a wire to the outside of the tank is impossible technology.

Re:Cause of death?

[Memnos]

That tank really worked as advertised. Now he is truly deprived of all sensation.

Re: Cause of death?

[tonique]

And in Absolutely Fabulous, Eddy called Saffron from inside an iso tank using a phone. Ergo, you could take a phone inside to communicate with the external world!

Re:Cause of death?

[martinfb]

He willed himself to death while in an altered state!

I hope more people will do this

[ooloorie]

"In December, the American Society for Gene and Cell Therapy issued a statement warning patients about unregulated gene therapies, saying such procedures are potentially dangerous and unlikely to provide any benefit."

It's "potentially dangerous" in the same sense as repairing your own car, packing your own parachute, or building your own hang glider is dangerous. Yes, you can hurt or kill yourself, but if you know what you're doing, you can limit the risk to something reasonable.

Furthermore, for human gene therapy, drug companies and the FDA really can't do much to reduce the risk anyway; most of the negative effects can only be observed in living human beings, so either you inject the therapy into a living human being or you don't get a gene therapy.

If people take these risks voluntarily, human gene therapy can make rapid progress and not be subject to million dollar a shot monopoly pricing. Drug companies don't like these kinds of grassroots efforts because they undercut their business.

Re:I hope more people will do this

[Greyfox]

Cars, Parachutes and gliders are a very well known problem space. It's not terribly hard to find someone in those problem spaces who can tell you if what you're doing is going to kill you. Gene editing is not a well-understood field at this point. We're just poking at things and seeing what happens. Even if you find something that looks like it's going to work, you really need to study that process for years to make sure that all the potential consequences are well understood. We're not at that point yet, and I'd honestly be surprised if it was less than another 2 - 5 decades before we're even remotely certain of anything that modifies human DNA for non-terminal diseases. For all we know at this point, this guy died of turbo-herpes and has introduced turbo-herpes into the ecosystem. That's why we need to be careful with this stuff.

Re:I hope more people will do this

[ArmoredDragon]

If people take these risks voluntarily, human gene therapy can make rapid progress and not be subject to million dollar a shot monopoly pricing. Drug companies don't like these kinds of grassroots efforts because they undercut their business.

I don't think any of these grassroots efforts have actually undercut their business in any meaningful way. I think that, if anything, people who sell fake cures that are already known to not work (i.e. using hyperbaric chambers to cure AIDS) would be much bigger targets since at least they divert much bigger sums of money than grassroots cures that nobody even produces to begin with.

Besides, most of these grassroots efforts ARE fake.

Re:I hope more people will do this

[Megol]

If you really don't think drug companies under FDA regulation are better equipped to do trials as safe as possible than amateurs disregarding safety entirely in order to earn easy money...

Re:I hope more people will do this

[quantaman]

"In December, the American Society for Gene and Cell Therapy issued a statement warning patients about unregulated gene therapies, saying such procedures are potentially dangerous and unlikely to provide any benefit."

It's "potentially dangerous" in the same sense as repairing your own car, packing your own parachute, or building your own hang glider is dangerous. Yes, you can hurt or kill yourself, but if you know what you're doing, you can limit the risk to something reasonable.

More like building your own car or parachute. This isn't "non-expert does something that experts do routinely" it's "non-expert attempts something that experts are still trying to figure out how to do safely".

Furthermore, for human gene therapy, drug companies and the FDA really can't do much to reduce the risk anyway; most of the negative effects can only be observed in living human beings, so either you inject the therapy into a living human being or you don't get a gene therapy.

I'm sure researchers have more ways that live trials on humans to start testing the safety and efficacy of these treatments. As for the DIY, medical treatments are notoriously hard to measure outcomes for, I mean there's still people who swear by homeopathic treatments. DIY is not the way to figure out if these treatments work.

Re:I hope more people will do this

[greenwow]

If people take these risks voluntarily, human gene therapy can make rapid progress...

Correct. That's why I think this guy is a hero like Barry J. Marshall that drank a culture of organisms extracted from a person with a stomach ulcer and five days later developed an inflation of the lining of his stomach which all but proved ulcers are usually caused by H. pylori. He received a Nobel Prize for that! Doctors for decades stood against that theory since it would take one of their key excuses to push their judgmental beliefs that ulcers were caused by things like not enough exercise, eating too much, and drinking too much alcohol.

The sad thing is that even when I went to the ER after vomiting blood due to what was apparently an ulcer that burst, the doctor I saw spent more time ranting about how prohibition had ended than treating me.

Re:I hope more people will do this

[ooloorie]

I'm sure researchers have more ways that live trials on humans to start testing the safety and efficacy of these treatments

You're sure... why? What the hell do you know about gene therapy?

As for the DIY, medical treatments are notoriously hard to measure outcomes for, I mean there's still people who swear by homeopathic treatments.

And given the strong placebo effect we observe in many patients, homeopathy is a safe and effective treatment, even if it doesn't work in the way it claims it does.

DIY is not the way to figure out if these treatments work.

The primary motivation of self-treatment is not to "figure things out". As long as people are doing this with their own money, let them.

Re:I hope more people will do this

[Anonymous Coward]

> ulcer that burs

Had that happen too. I was miserable for weeks before that, and I ruined my PowerBook There was just no controlling or slowing it down when the blood came up. My doctor kept talking about "life style" changes instead of real treatment. He bragged about running every day, eating only 1.5 Mcalories a day, and never having drank a drop of alcohol in his life. I worked on an inventory and order web site for a produce distributor at the time, so I was eating a lot of raw vegetables. After eating less veggies, I felt somewhat better. I had blood tests done at my own expense since my doctor wouldn't recommend them so insurance wouldn't pay, and I found-out I had very low vitamin B12 levels. I couldn't get my levels up when taking it sublingually so I wanted to try injections. He wouldn't get me a prescription for syringes (and that's required in my state), so I ended-up having to buy them from a literal drug dealer. Since then I've lost almost forty pounds, have more energy, and I now only get heartburn about twice a month instead of almost every night. I don't know if the B12 helped or not, but getting more sleep certainly helped since most nights before that I had to sit upright in a chair for hours to help with the pain. It just sucks that doctors still use ulcers as a "moral pulpit" instead of treating the problem.

Re:I hope more people will do this

[ooloorie]

I don't think any of these grassroots efforts have actually undercut their business in any meaningful way.

There is a huge number of home remedies that work just as well as patented drugs. And, yes, they do cut into drug company profits.

I think that, if anything, people who sell fake cures that are already known to not work (i.e. using hyperbaric chambers to cure AIDS)

That's like saying that people shouldn't develop software on their home computers because other people used to build fake perpetual motion machines.

Seriously, CRISPR has nothing to do with hyperbaric chambers. And devising potential cures with CRISPR is much more like programming than the kind of traditional treatments people have come up with.

Re:I hope more people will do this

[ooloorie]

Gene editing is not a well-understood field at this point. We're just poking at things and seeing what happens.

Gene editing is extremely well understood: it makes predictable changes to human DNA. That's its attraction.

For all we know at this point, this guy died of turbo-herpes and has introduced turbo-herpes into the ecosystem.

Well, since you don't understand how gene editing works, that's the kind of nonsense you believe.

Re:I hope more people will do this

[ArmoredDragon]

Cars and parachutes are a poor analogy anyways. This is more like opening up a binary copy of the Linux kernel with a hex editor, and making changes to it with only a very rudimentary knowledge of assembly, and hardly any knowledge of the Linux kernel in general. Screwing up with that means the kernel crashes or something just doesn't work right. Screwing up with CRISPR, assuming something besides nothing at all happens, is going to fail spectacularly...like oh say...cancer formation in multiple major organs simultaneously.

Re:I hope more people will do this

[ooloorie]

If you really don't think drug companies under FDA regulation are better equipped to do trials as safe as possible than amateurs disregarding safety entirely in order to earn easy money...

That belief is merely a testament to your ignorance.

Re:I hope more people will do this

[greenwow]

I had very low vitamin B12 levels.

I do think that's part of it, but a friend that works for Univ of Washington School of Medicine looked into it for me, and she said there's no evidence of that since there weren't any studies investigating that. I guess since you can't patent B12 there's no financial incentive to do so. IIRC my levels were 5 picograms per milliliter and normal was about 450. I know my level since at work we paid to have tests done for all of the developers. The Indian guys that are vegans.were all very low too, but not nearly as bad as mine. I've been taking B12 since, but I don't know if it has helped since I haven't spent the money to have another blood test done.

I do know that while I still can't sleep most nights due to pain, I haven't had an ulcer burst since.

Re:I hope more people will do this

[iMadeGhostzilla]

Cars, Parachutes and gliders are also, per Nassim Taleb, not complex systems. In complex systems -- living creatures, planet, societies, human or animal -- it is often very difficult to deduce the arrow of cause and effect, if one even exists at all.

Re:I hope more people will do this

[Victor Liu]

Gene editing is extremely well understood: it makes predictable changes to human DNA. That's its attraction.

Absolutely. However, the consequences of those very predictable edits is not well understood.

Re:I hope more people will do this

[ralphsiegler]

people die in trials and from FDA approved drugs that are later found to be very harmful. They are in the pockets of big pharmy and serve their interests.

Re: I hope more people will do this

[Anonymous Coward]

People die in those trials. In rare cases. After mice, pigs, and chimps have been tested and NOT died. And if a significant fraction start dying the trial stops.

When Hank the CRISPR enthusiast / homeopathic doctor tries his cure, none of that is true.

Re: I hope more people will do this

[SirSlud]

People are not islands. They have dependants, friends, family, etc. They can pass on desease. They can land on other people. Cleaning up bodies costs money and has an emotional cost. Societies cannot and should not be expected to bear the full cost of people who take very bad risks. This notion that people make choices for self in isolation is wishful thinking and over simplification. Part of the function of a society is to set limits on what those risks are.

Re: I hope more people will do this

[www.goatse.ru]

Hah "turbo herpes".

So that's what the turbo button does!

Re:I hope more people will do this

[Darinbob]

This is more like a pre-teen building a bomb; dangerous, you can hurt or kill yourself, and you certainly don't know what you're doing. Nobody knows what they're doing with gene therapies without a sufficient amount of testing. Let me repeat, these tests have not been performed on animal, vegetables, or even rocks, and there is not even a theory that it might work, so no one knows what the result will be. Sure, there are patients with no hope of having an effective cure, but that gives no reason to hand them a lootbox full of random chemicals. These people are irresponsible know-nothing brats, which is not the way you bring down pharmaceutical prices or bring about medical advances.

Re:I hope more people will do this

[Darinbob]

It's not like programming. We know how computers work. We know how to build them and debug them. But for DNA we are still vastly ignorant. We know about genes and where they are and how to change them, but we DO NOT know what the genes do specifically. We may have a broad idea that a particular gene is involved in a highly complicated process but not what the effects are of changing that gene.

What you are suggesting is equivalent to hacking your computer to change byte #76,238,110 of a kernel and rebooting the computer, without knowing what code is on the computer or how it works, and the person doing the hacking is willfully ignorant of computing and refuses to follow best practices of computer design because of a delusion about Big-Computer holding us back.

Re:I hope more people will do this

[Darinbob]

The issue is not people treating themselves with their own money. The issue is with quacks advocating for and encouraging patients to try out their dangerous theories.

Re:I hope more people will do this

[h33t l4x0r]

Gene editing is extremely well understood: it makes predictable changes to human DNA. That's its attraction.

- Seth Brundle

Re:I hope more people will do this

[Greyfox]

Right. I don't understand how gene editing works. I do understand how programming works, though. And I understand what happens when some jackass who doesn't understand about programming starts cutting and pasting code around and finds that he's occasionally somewhat successful at getting something to do sort of what he wants it to. We're doing that now with systems more complex than anything humanity has ever built. Given that we can't even change the formulation of soap without accidentally unleashing antibiotic-resistant E-Coli on an unsuspecting world, we really should approach this shit with a little bit of humility and caution.

Re:I hope more people will do this

[Chris Mattern]

Gene editing is extremely well understood: it makes predictable changes to human DNA. That's its attraction.

Gene-editing itself is well understood (I'd hesitate to call it "extremely" well understood, though). What the consequences of a given gene edit might be are often not well understood at all, because our understanding of cellular machinery is still rudimentary.

Re:I hope more people will do this

[jsrjsr]

To be fair, that wasn't intentional gene editing....

Re:I hope more people will do this

[Anonymous Coward]

You should go read about the horrors of First-In-Man drug trials before advocating such reckless behavior. You should also read about all the work that is done on a drug candidate before it is even allowed to go to First-In-Man testing.

Go read about the British First-In-Man trial that caused 8 cases of cytokine storm while trying to use genetic engineering to get the immune system to manufacture antibodies to fight cancers. While likely one of the most publicized cases due to NHS involvement and their role in the drug trial, it is not an isolated incident. That drug candidate had millions of dollar of research and development done. Millions of dollars of testing done. Lethal dose testing, adverse effect testing, etc. All of it was done and it still almost killed 8 people and would have if it werent for the doctor overseeing the trial on behalf of the company testing the drug and an NHS immunology expert who successfully diagnosed the problem in 7 of the 8 patients before things worsened. One of the patients was not so lucky and lost multiple limbs as a result of gangrene.

Now whats interesting about this British First-In-Man is that even though all of them received the same gene therapy, they all responded to it differently. So when a drug company spends close to 100 million dollars on a gene therapy and almost kill 8 people the first time they test it, I dont put much faith in "grassroots" genetic engineering. Furthermore, all of the people who were in the trial were PAID VOLUNTEERS. Despite that fact, the public outrage and backlash at the drug company conducting the trial was swift and ferocious.

You realize that its possible that you created this situation yourself right? When large companies tested drugs and killed volunteers, the public got mad and asked for regulation. Complying with regulations costs money. Those costs increase the cost of the drugs and they increase development costs. It isint Merck that asked the government for all the regulations they spend hundreds of millions of dollars a year complying with.

Re:I hope more people will do this

[CFD339]

Right. I don't understand how gene editing works. I do understand how programming works, though. And I understand what happens when some jackass who doesn't understand about programming starts cutting and pasting code around and finds that he's occasionally somewhat successful at getting something to do sort of what he wants it to.

You've just described how we got Facebook

Re:I hope more people will do this

[ooloorie]

Given that we can't even change the formulation of soap without accidentally unleashing antibiotic-resistant E-Coli on an unsuspecting world

There is no evidence that antibacterial soap actually creates antibiotics resistance in the real world. Furthermore, the gene editing is done on the humans, not on the pathogens.

we really should approach this shit with a little bit of humility and caution

You'd be amazed at how much more cautious people are who experiment on themselves than doctors who experiment on others and don't really have to worry about the consequences.

Re:I hope more people will do this

[ooloorie]

The issue is not people treating themselves with their own money.

Great!

The issue is with quacks advocating for and encouraging patients to try out their dangerous theories.

Well, good then that that's not what we are talking about here.

Re:I hope more people will do this

[ooloorie]

What you are suggesting is equivalent to hacking your computer to change byte #76,238,110 of a kernel and rebooting the computer, without knowing what code is on the computer or how it works

And if it's my computer, then I should be allowed to do that. (And it isn't really the equivalent of that; there are plenty of genes that we understand quite well.)

and the person doing the hacking is willfully ignorant of computing and refuses to follow best practices of computer design because of a delusion about Big-Computer holding us back.

That isn't a "delusion", that's how the computer industry used to work until people started hacking their own computers. Often they failed, sometimes they succeeded, sometimes they fried their hardware. But in the end, we got Linux, open source, GNU, and a lot of other really good things out of that.

Re:I hope more people will do this

[ooloorie]

This is more like a pre-teen building a bomb; dangerous, you can hurt or kill yourself,

How is an adult doing something dangerous to themselves like a pre-teen doing something dangerous to themselves?

Nobody knows what they're doing with gene therapies without a sufficient amount of testing. Let me repeat, these tests have not been performed on animal

And how would you test CRISPR gene editing for a human disease on animals? Come on, go ahead, explain that.

and you certainly don't know what you're doing

Correction: you don't know what you are doing.

Re: I hope more people will do this

[ooloorie]

This notion that people make choices for self in isolation is wishful thinking and over simplification. Part of the function of a society is to set limits on what those risks are.

I have a right to kill myself in any way I see fit, even if that hurts my family, my friends, etc. No, you do not have a right to limit the risks competent adults take with their lives. In addition to not having the right, you also do not have the ability. Notice that this guy was going to do his experiment in Mexico.

Societies cannot and should not be expected to bear the full cost of people who take very bad risks.

Who is expecting anybody to bear the full cost of people who take very bad risks? Did anybody ask for ACA to cover the consequences of editing my own genes?

They can pass on desease. They can land on other people.

That's not an issue in this case.

Re:I hope more people will do this

[ooloorie]

Absolutely. However, the consequences of those very predictable edits is not well understood.

That's saying that the consequences of editing a text file with emacs are not well understood; it's a meaningless statement, since the consequences depend on the edit.

There are many edits with predictable consequences. There are many edits with unpredictable consequences. But the range of consequences is pretty straightforward: most of the time, nothing happens, and rarely the person either gets sick or gets better.

There are some implausible scenarios under which gene editing might pose a risk to other humans, but regulations are not going to stop those anyway, so you might as well not bother making those illegal.

Re:I hope more people will do this

[ooloorie]

In complex systems -- living creatures, planet, societies, human or animal -- it is often very difficult to deduce the arrow of cause and effect, if one even exists at all.

People attempting gene therapy on themselves or others don't inject random sequences, they usually start with a reasonable theory based on extensive prior experimental results, and the risks are fairly predictable. The usual outcome is that it simply doesn't work. The next most likely outcome is that it has some beneficial effect. All other outcomes are very unlikely.

Re: I hope more people will do this

[Wycliffe]

There are many edits with predictable consequences.

Sure we might have a good idea that a certain gene controls X but we don't necessarily know other things it might control. For instance viagra dialates blood vessels in the eyes and cancer drugs kill all fast growing cells including hair. Gene editing could be 10 times more unpredictable. Some snippet of dna might do one thing in muscle cells and something completely different in brain cells. Even animal testing isn't a sure thing because we still don't really know what is unique about humans that makes us smarter than other animals.

Re:I hope more people will do this

[omnichad]

#2 is a little silly, since replacing a flat tire with a spare had a potential for extreme danger if you do it won't, but it's impossible to have it inspected in any reasonable way. And how often is failed car repair the cause for wrecks involving other parties?

Re:I hope more people will do this

[omnichad]

Causing a cytokine storm means it worked. I've always expected that to be the result from anything that changed the immune system very rapidly. The fix would be, I assume, to somewhat suppress the immune system to be sure nothing happened too fast.

Re:I hope more people will do this

[Victor Liu]

Absolutely. However, the consequences of those very predictable edits is not well understood.

That's saying that the consequences of editing a text file with emacs are not well understood; it's a meaningless statement, since the consequences depend on the edit.

There are many edits with predictable consequences. There are many edits with unpredictable consequences. But the range of consequences is pretty straightforward: most of the time, nothing happens, and rarely the person either gets sick or gets better.

I think the better analogy is it is like using emacs to edit a large binary executable (something I've actually done before in trying to crack licensed programs). One would hope that, through a debugger, one has a good idea of what the edit is supposed to do in order to exact the changes expected. Even when I was pretty sure I understood what changes I needed to make, I was still not eliminating the license checks, and causing random crashes. I don't claim to be an expert at doing this. However, our biological understanding (the debugger) is currently similarly lacking, if not more so. We know that editing DNA sequences modifies the transcribed proteins, and that there are also epigenetic factors that are affected (which was only established relatively recently), among other things (possibly yet to be discovered). I personally believe it is presumptuous and premature to declare that consequences of edits are predictable, since there could be subtle long-term decades-later effects of edits, or perhaps consequences for progeny of those subject to gene editing.

There are some implausible scenarios under which gene editing might pose a risk to other humans, but regulations are not going to stop those anyway, so you might as well not bother making those illegal.

What should be, and what is, as you point out, are two different things. I would rather be overly cautious in the case.

Re: I hope more people will do this

[SirSlud]

It costs money to throw your body out. You cannot make killing yourself impact nothing. You live in the world with other people. I don't consider your attitude particularly adult.

Re: I hope more people will do this

[SirSlud]

And you don't have that right, legally speaking, anywhere on earth. You can choose to end your life in certain places if you meet a fairly strict set of criteria that those societies have agreed on. People can also make mistakes when trying to end their lives, and society bears the cost of taking care of these people flight for no other natural reason than human compassion (but also often whatever social safety nets exist where it happens.) You're trying to make a case by saying that it's a right simply because you say it is, and deliberately oversimplifying details that belie your position that humans can kill themselves and affect nobody in doing so.

Re:I hope more people will do this

[ceoyoyo]

Things like this really don't help advance medicine at all. Giving someone a drug isn't an "oh, look they're cured"/"oh, crap, they're dead" dichotomy. Treatment works to different degrees, works differently in different people, has short, medium and long term effects, etc. And there's the placebo effect.

This is the very embodiment of the phrase "the plural of anecdote is not data."

Also, a medical treatment, particularly something like gene therapy, is nothing like repairing your own car.

Re:I hope more people will do this

[ceoyoyo]

"Gene editing is extremely well understood: it makes predictable changes to human DNA. That's its attraction."

No, it doesn't. CRISPR is reasonably good at shutting off genes you want shut off... if you can identify the gene correctly, make a good template, deliver the therapy effectively, etc.

Gene "editing" is a whole different matter. You're basically chopping up a DNA strand and hoping some other DNA of your choosing happens to be floating by and gets shoved in the gap. There's been a lot of progress in making the whole thing a lot more reliable, but it's still pretty unreliable from a "I'm going to do this in an actual person" point of view. It's especially unreliable when you're talking about things bigger than individual cells, and the failures tend to be random mutations.

Re:I hope more people will do this

[ceoyoyo]

Now imagine that instead of cutting and pasting the normal way you have to take a text file, chop it in half, and the operating system will automatically insert whatever happens to be the next thing received by your network card, in promiscuous mode.

Re: I hope more people will do this

[ooloorie]

And you don't have that right, legally speaking, anywhere on earth.

Suicide is legal in much of the world.

People can also make mistakes when trying to end their lives, and society bears the cost of taking care of these people flight for no other natural reason than human compassion

Compassion is something individual feel, and it leads to charity, a voluntary act. To argue that you should restrict people's liberties because other people might be charitable towards them otherwise is obscene.

When society provides medical treatments to people, that has nothing to do with compassion but compulsion.

Re:I hope more people will do this

[ooloorie]

What should be, and what is, as you point out, are two different things. I would rather be overly cautious in the case.

Just like lots of people are irrationally afraid of GMO, vaccinations, and other technologies. The fact that their "caution", translated into legislation, causes people to die just obviously doesn't matter to you.

Re: I hope more people will do this

[ooloorie]

Sure we might have a good idea that a certain gene controls X but we don't necessarily know other things it might control. ... Some snippet of dna might do one thing in muscle cells and something completely different in brain cells.

So what? Worst case, the person dies. It was their choice and their life.

Even animal testing isn't a sure thing because we still don't really know what is unique about humans that makes us smarter than other animals.

And as I was pointing out, when it comes to gene editing, there really is no animal model for a specific treatment. You can try a similar treatment in animals to what you intend to use in humans, but it's going to give you little useful safety data. That is why gene editing is different from normal drugs.

Re: I hope more people will do this

[ooloorie]

It costs money to throw your body out. You cannot make killing yourself impact nothing. You live in the world with other people.

Yes, I can impose costs on you and there is nothing you can do about it. It isn't fair.

I don't consider your attitude particularly adult.

The adult thing to do is to recognize that life isn't fair, and that trying to turn society into a totalitarian shithole in an attempt to make it fair doesn't work.

Obviously, you are not an adult.

Re:I hope more people will do this

[ooloorie]

Things like this really don't help advance medicine at all.

A lot of science starts with anecdotes and individual observations. They are not sufficient to prove a scientific theory, but they are sufficient to formulate it and formulate good controlled experiments.

This is the very embodiment of the phrase "the plural of anecdote is not data."

And your platitudes are not an argument.

Also, a medical treatment, particularly something like gene therapy, is nothing like repairing your own car.

And your platitudes are nothing like an argument.

Re:I hope more people will do this

[Opportunist]

Actually I'm more in favor of him injecting himself with a cure he created himself than him repairing his own car. The former can only kill himself, a faulty car with shot brakes can well kill innocent bystanders who had nothing to do with him not knowing what he's doing.

Where I draw the line is when he tries to convince others that his quackery has any merit. Which this person didn't, as far as I can tell, so it's absolutely ok in my books.

Your body is yours. It's about the last thing you still really own. If there is anything on the planet you should be allowed to do whatever you want with, it's your body.

Re:I hope more people will do this

[ooloorie]

Where I draw the line is when he tries to convince others that his quackery has any merit.

That seems like an odd position to take. Are you saying that after he injected himself with a gene therapy treatment, he shouldn't be able to talk truthfully about his experiences?

Re:I hope more people will do this

[Hognoxious]

Sticking your head in the sand doesn't really amount to much.

Doing nothing is a better option than making things worse.

Come back when you have a serious disease that gene editing might fix

Irrelevant - I don't.

Re:I hope more people will do this

[thegarbz]

but if you know what you're doing

The world's top most minds in this field can be described as "not knowing what they are doing" which is why there is so much trial and testing in the first place.

Re:I hope more people will do this

[ooloorie]

You gave "being alive" as your evidence that you knew "enough about gene therapy" to give an informed opinion. Since, by your own admission, you have not had a need for gene therapy, your argument doesn't work: you're still alive not because of your (obviously non-existent) understanding of gene therapy, but because you have never had the need for it.

Re: I hope more people will do this

[Gondola]

> Worst case, the person dies.

Worst case, you introduce a change that gets into the gene pool that makes us more vulnerable to a common disease, shortens lifespan, increases infant mortality, etc. With genetics, the results could be terribly subtle or take decades to reveal themselves.

Re:I hope more people will do this

[ooloorie]

The world's top most minds in this field can be described as "not knowing what they are doing"

There are thousands of reasonable potential gene therapy treatments that a reasonably competent molecular biologist can underrstand and that have an excellent, rational basis in decades of research.

which is why there is so much trial and testing in the first place.

No, there is so much "trial and testing" going on because the FDA, drug companies, and doctors are covering their asses. People experimenting on themselves don't need to cover their asses and know their preferences, which means that they can make a more rational assessment of their risks and benefits.

Re: I hope more people will do this

[ooloorie]

Worst case, you introduce a change that gets into the gene pool that makes us more vulnerable to a common disease, shortens lifespan, increases infant mortality, etc.

Germ line modifications with CRISPR take a lot of extra effort to produce. Even if the self-experiment did result in vertical transmission, how is that different from any other deleterious mutation? Right now, not only do we tolerate deleterious mutations from propagating in the human gene pool, we actively and massively subsidize deleterious mutations.

Re:I hope more people will do this

[jythie]

Down on my bookshelf I have medical text from the 1800s that goes over the wonders of 'water treatment', a revolutionary form of medicines that became quite popular at the time. Its big advantage was, it didn't do anything. Doing nothing had a safer range of outcomes than the wide range of DIY and 'professional' cures that were in common use at the time. So yeah, it is not unheard of for 'doing nothing' to be a better option than random quacks advancing their personal theories, esp when they are taking them straight to 'the public' rather than doing the hard work.

Re:I hope more people will do this

[jythie]

That is part of the problem. In general they are not starting with reasonable theories based on prior extensive experimental results. They are starting with ideas that people with no domain knowledge think sound right and experiments that would get laughed out of a professional lab. Their whole ethos is that they are smarter than people who actually know what they are doing and that knowledge means you know less.

Re: I hope more people will do this

[lgw]

Yes, freedom can cost money.

Freedom is more important.

Re:I hope more people will do this

[Anonymous Coward]

I'm a research scientist in biotech. The only reason I would try self-CRISPR/Cas9 would be if I had a gun pointed at my head. Here's the deal: biology is hard. Figuring out a target for drug discovery--a single enzyme--is usually based off of years to decades of basic academic research. From there the rule of thumb is 10 years and $1 billion to come up with an actual marketable drug; a great many compounds--hundreds of thousands to millions--will be tried from initial high throughput screening to animal models to clinical trials. Most do nothing and are eliminated early. Some that have efficacy in vitro fail to work in vivo. Some are found to be effective but with unacceptable side effects. Some are even lethal. Testing is exhaustive in part because predicting what compound has what it takes to be an efficacious drug is beyond our current abilities, and will remain such for the foreseeable future.

Only for the most basic things might a CRISPR/Cas9 approach currently be feasible, for instance modifying a single gene encoding a single protein that has an undesirable point mutation, cystic fibrosis for example. Now any kid with a masters degree in a relevant field probably could, given time and resources, modify the gene as desired in cell culture. Delivery of treatment in a safe and efficacious manner in an adult organism is an entirely different manner however and a lone "biohacker" isn't going to be able to compete with a team of well funded experts.

Re:I hope more people will do this

[HornWumpus]

Be fair, at least the doctors got educated first.

Re: I hope more people will do this

[HornWumpus]

Pot. It's good for what ails ya.

Re:I hope more people will do this

[ooloorie]

Be fair, at least the doctors got educated first.

Doctors know very little molecular biology and are generally lack the skills to design gene therapies.

Re:I hope more people will do this

[ooloorie]

That is part of the problem. In general they are not starting with reasonable theories based on prior extensive experimental results. They are starting with ideas that people with no domain knowledge think sound right and experiments that would get laughed out of a professional lab.

You're pulling that opinion out of your ass. And it's a ridiculous belief, because doing anything with CRISPR requires a significant understanding of molecular biology; that is, if you lack the expertise, you'll simply design DNA sequences that do nothing.

Their whole ethos is that they are smarter than people who actually know what they are doing and that knowledge means you know less.

You're projecting your own ethos onto others: you're clearly wildly ignorant yet pretend to speak with authority.

Re:I hope more people will do this

[thegarbz]

No, there is so much "trial and testing" going on because the FDA, drug companies, and doctors are covering their asses.

So what you're saying is people aren't certain. Glad you agreed with me.

Re:I hope more people will do this

[Opportunist]

The next step would be to do a sensible trial series. "Curing" something in a single incident means jack shit. Otherwise the pizza I had yesterday is a perfect cure for headaches because I had a headache before I ate the pizza but it was gone by the time I was done eating.

Re: I hope more people will do this

[Gondola]

The statement was "worst case scenario." I replied with an actual pretty bad result, not a judgment on the practice. And of course the worst case scenario would be: breaks down disease barriers between species predicating an extinction event.

Read more critically.

Re: I hope more people will do this

[ooloorie]

The statement was "worst case scenario."

Yes, and I responded in so many words that making policy based worst case scenarios is irrational and harmful; I'm sorry I wasn't clear enough. And most people understand this intuitively and don't base everyday decisions on worst case scenarios; they (you) dredge up worst case scenarios when you engage in motivated reasoning; that is, when you have reached a conclusion already and then just try to find any reason whatsoever to defend your conclusion.

Read more critically.

Think more critically.

Re:I hope more people will do this

[ooloorie]

So what you're saying is people aren't certain. Glad you agreed with me.

Is that what you think I said? You really are a bit dimwitted, aren't you.

Re:I hope more people will do this

[ooloorie]

Curing" something in a single incident means jack shit.

For starters, it means that the treatment is probably not immediately toxic, something people also establish as part of clinical trials first.

Otherwise the pizza I had yesterday is a perfect cure for headaches because I had a headache before I ate the pizza but it was gone by the time I was done eating.

Herpes is not like headaches; herpes infections don't generally spontaneously clear, so if they do within a few weeks or months of a treatment, it's likely caused by the treatment.

In any case, people shouldn't require your or anybody else's approval to experiment on their own bodies.

Re: I hope more people will do this

[edris90]

But the individual has the right to cast off imperatives of society and choose a different path. As they did not create Society they are not responsible for it. They have right to change their priorities and make a life of their own choosing. People themselves are more important then the the coceptualtools they create, like society, are

Re:I hope more people will do this

[Opportunist]

Given the amount of snake oil peddlers that are currently filling the market, from "Vitamin B17" to MMS, I dare say that at the very least people should experiment with their own bodies and not those of their kids.

Re:I hope more people will do this

[ooloorie]

Well, that's what we can agree on.

Hopefully, you'll also come around to condemning government experimentation our our kids, like ADHD medication and depriving boys of male role models.

Re:I hope more people will do this

[Opportunist]

ADHD medication wouldn't be necessary if we didn't first fill our kids with a million calories and then feel the urge to sedate them when they want to burn that energy somehow. And 10 years later we wonder how we end up with obese kids that have high blood pressure and develop diabetes.

And considering male role models, well, that's something you have in your own hands. Maybe it's worse in the US, here governments don't tell you how to raise your kids. It may be different in large cities, around where I live a boy still learns to weld with acetylene and work with power tools, it's kinda required if you want to be a boy. Yeah, that can hurt sometimes, so what? Nobody is stupid enough to touch the welding flame and if you are, well, Darwin should be right from time to time.

Re:I hope more people will do this

[ooloorie]

ADHD medication wouldn't be necessary if we didn't first fill our kids with a million calories and then feel the urge to sedate them when they want to burn that energy somehow. And 10 years later we wonder how we end up with obese kids that have high blood pressure and develop diabetes.

Yes, and government school lunches and governmental nutritional guidelines brought us to this point.

And considering male role models, well, that's something you have in your own hands. Maybe it's worse in the US, here governments don't tell you how to raise your kids.

Are you kidding? Europe has that even worse than the US: government subsidies of single parenthood, government-financed preschool, and an extremely lopsided gender ratio in pre-, primary and secondary school faculty. And European governments, just like the US government, indoctrinates (tells) people what gender roles and family structures they should adopt.

Re:I hope more people will do this

[Anonymous Cow Ward]

A lot of negative effects get caught in animal models before going into humans. Not all, certainly, but a lot. DIY gene therapists often don't have access to good animal models, and generally can't run properly controlled experiments anyway (either lack of resources or lack of ability to create them, or both).

More to the point, there's a huge issue of quality control - the process of actually making the stuff for gene therapy is not easy to replicate at home, certainly not without the ability to test it on animals beforehand. There's still considerable variation between different core facilities that make gene therapy material, and these are people who generally do know what they're doing as much as is currently possible. Making vector at home is ludicrous and will introduce so much variation that DIY results will be almost impossible to interpret.

Lastly, there's so much unexplored stuff out there that even the people who have studied this for a long time aren't totally sure what they're doing - from idea to animals to humans often takes a decade or two, and maybe another decade on top of that to bring it to market. There is the potential for human gene therapy to progress rapidly, but the much more likely outcome is that a bunch of people fuck it up royally, public trust goes to near-zero, and academic institutions and drug companies can't make progress because people aren't interested in it any more.

Re:I hope more people will do this

[Anonymous Cow Ward]

CRISPR/Cas9 does not always make predictable changes to DNA. There's mounting evidence that there's a lot more off-target effects than we initially thought, and while people are certainly trying to fix that, those changes will also require more testing. In addition, the actual cell/vector modification and delivery are definitely not well understood.

Re: I hope more people will do this

[Anonymous Cow Ward]

You can try a similar treatment in animals to what you intend to use in humans, but it's going to give you little useful safety data.

Well, that's just wrong. Delivery methods are certainly going to give you safety data. And you can see off-target effects if you use cultured human cells, which most people can't do at home.

Re:I hope more people will do this

[Anonymous Cow Ward]

Medical doctors, often - but PhDs, on the other hand...

Re:I hope more people will do this

[Anonymous Cow Ward]

There are a lot of human genes where we do know what they do specifically. Not all, certainly, but we know a lot about genes involved in specific genetic diseases, and we know what a functional copy looks like.

What's more worrying is the possibility of unintentionally changing other stuff and not knowing what we're changing or what the effects will be.

Re:I hope more people will do this

[ooloorie]

Not all, certainly, but a lot. DIY gene therapists often don't have access to good animal models, and generally can't run properly controlled experiments anyway (either lack of resources or lack of ability to create them, or both).

And it is their choice to take that risk.

More to the point, there's a huge issue of quality control - the process of actually making the stuff for gene therapy is not easy to replicate at home

Again, it's their choice to take that risk.

There is the potential for human gene therapy to progress rapidly, but the much more likely outcome is that a bunch of people fuck it up royally, public trust goes to near-zero, and academic institutions and drug companies can't make progress because people aren't interested in it any more.

That is not a good argument for restricting people's right to control their own body.

Re:I hope more people will do this

[ooloorie]

CRISPR/Cas9 does not always make predictable changes to DNA. There's mounting evidence that there's a lot more off-target effects than we initially thought, and while people are certainly trying to fix that, those changes will also require more testing.

"Require" in what sense? Who are you to decide what risks other people want to take with their own bodies?

Re:I hope more people will do this

[ooloorie]

Not all, certainly, but a lot. DIY gene therapists often don't have access to good animal models, and generally can't run properly controlled experiments anyway (either lack of resources or lack of ability to create them, or both). More to the point, there's a huge issue of quality control - the process of actually making the stuff for gene therapy is not easy to replicate at home, certainly not without the ability to test it on animals beforehand.

Well, and whose fault is that? Oh, right, the people who are overregulating drug development to the point where only a tiny group of well-connected drug companies can engage in it.

Besides, it's not even true. You can ship out this kind of testing to labs in China. And many people who are interested in this kind of self-experimentation may well be highly qualified researchers with all the necessary lab facilities; all they lack is the resources and patience to wait for 5-10 years of clinical testing and all the b.s. that entails.

Re: I hope more people will do this

[ooloorie]

Delivery methods are certainly going to give you safety data. And you can see off-target effects if you use cultured human cells, which most people can't do at home.

First of all, "at home" and "big drug company" is a false dichotomy. There are many people with the education and lab facilities to do a reasonable job, they just happen not to have a $1bn and 10 years for clinical trials.

Second, people aren't starting from scratch. Anybody considering at home gene therapy would likely start with something that's already been used successfully for similar diseases/treatments, including an existing delivery system.

Third, your analysis is true for big drug companies that test lots of treatments and are subject to massive liabilities. But what is rational behavior for a big drug company with a financial motive isn't rational for an individual with an incurable illness. A drug company would never run a clinical trial with a drug that has a 33% chance each of being ineffective, lethal, or curative; but many people with serious incurable illnesses would take such a risk and consider it rational.

Re:I hope more people will do this

[ooloorie]

Medical doctors, often - but PhDs, on the other hand..

Quite right. And a smart, skilled Ph.D. with experience in gene therapy would be a prime candidate to perform such experimentation on himself, despite regulations that prohibit it.

Re:I hope more people will do this

[Anonymous Cow Ward]

If he or she wanted to, yes. I would discourage it, given the substantial amount of personal effort and probable lack of translatability to others, but I think he or she should be allowed to.

Re: I hope more people will do this

[Anonymous Cow Ward]

Generally, academic institutions would not allow use of their equipment or facilities for personal experimentation, partially due to liability reasons. If they sign off on the use of those facilities, then it's certainly much easier to do safely.

Existing delivery systems are very difficult to make yourself and most people working on specific diseases don't - they outsource it to core facilities that do it regularly.

Incurable doesn't necessarily mean untreatable though. Someone with a certainly lethal disease may well want to try their own hand at fixing it, and I don't think we should block that via legal means. I do think that whatever results a self-treater got would be very difficult for others to leverage in the search for a cure.

Re:I hope more people will do this

[ooloorie]

Great, well, that's all I'm saying.

We'll have to disagree on whether that's useful. My reading of the history of science is that there has always been a lot of nonsense when a new technology came out, but that we have also learned a lot from the haphazard experimentation of amateurs and oddballs.

Re:I hope more people will do this

[Anonymous Cow Ward]

The lack of access to good animal models comes down to two things: 1) lack of facilities to keep them safe and in a controlled environment that also passes regulations against animal cruelty, and 2) lack of funding. It's not overregulation of drug development that hinders access to animal models.

You can argue that highly-qualified researchers want to do this themselves, but most places they work wouldn't let them use their facilities for a risky side project that has a pretty good chance of hurting the institution's image, and there aren't that many highly qualified scientists with genetic disorders amenable to gene therapy. As a side note, some of the more common delivery vectors out there have a habit of inducing immune responses in the researchers when they're exposed at very low levels, which would prevent the vectors from working. So self-experimentation has an additional hurdle there.

Shipping it off to China also has its own risks - and still isn't exactly cheap.

Re:I hope more people will do this

[Anonymous Cow Ward]

"require" more testing before people should believe that it's both safe and effective to use. It requires more testing before we understand it well enough to say any therapy would be useful for widespread use, beyond the few people who would potentially have the skills, access to resources, and need to do this to themselves.

Re:I hope more people will do this

[Anonymous Cow Ward]

Not all, certainly, but a lot. DIY gene therapists often don't have access to good animal models, and generally can't run properly controlled experiments anyway (either lack of resources or lack of ability to create them, or both).

And it is their choice to take that risk.

I didn't say it wasn't.

More to the point, there's a huge issue of quality control - the process of actually making the stuff for gene therapy is not easy to replicate at home

Again, it's their choice to take that risk.

Again, I didn't say it wasn't.

There is the potential for human gene therapy to progress rapidly, but the much more likely outcome is that a bunch of people fuck it up royally, public trust goes to near-zero, and academic institutions and drug companies can't make progress because people aren't interested in it any more.

That is not a good argument for restricting people's right to control their own body.

Cool, good thing I wasn't arguing that there should be legal restrictions on self-experimentation then. I'm arguing it's generally a stupid and selfish idea to do so, because they don't have the tools or expertise needed to do it properly, and it could have dire consequences for others in similar situations.

Re:I hope more people will do this

[Anonymous Cow Ward]

I think once systems get farther along in how well that's understood, that's often true, but has notably not been true in many areas that require expensive equipment (high energy physics, I think, and a lot of genomics).

As much as CRISPR is touted as an easily tunable/targetable system, that's mostly only true in relation to what we were using previously. It's a hell of a lot easier than TALENs or ZFNs, but even experts often need to screen different guide RNAs and make dramatic changes to their approach depending on the surrounding sequences.

It's certainly possible some amateur will discover a revolutionary approach to gene therapy in his garage, but given the current uncertainties about the system and the risks involved, I doubt it. When the basic science is better understood, I think that likelihood goes up by a substantial amount.

Re:I hope more people will do this

[Darinbob]

But I think we're sort of at the level of "this byte is normally 0x23 in healthy people, but I see 0x24", without having the source code to verify. Changing it might fix things, it might have an effect, or it might make things worse. We really don't know what these genes do, we just know there are strong correlations. We could learn more with human experimentation, but that's a road I think we're not yet ready to go down. We have to prove gene therapy is safe before we start double blind trials, much less just jump in head first and dispense with the science.

There's a whole industry of fake cancer cure clinics in Mexico, those only succeed in extracting money from desperate and gullible patients. People are still touting laetrile as effective and blame the US medical industry as suppressing it, despite no evidence of it working. We don't need another such clinic.

Re:I hope more people will do this

[ooloorie]

there aren't that many highly qualified scientists with genetic disorders amenable to gene therapy.

I suspect there are a lot of researchers with HSV, HPV, HIV, and similar infections, which is what we're talking about here.

Shipping it off to China also has its own risks - and still isn't exactly cheap.

There are many people to whom paying a million dollars out of their own pocket isn't such a big deal.

Re: I hope more people will do this

[ooloorie]

Existing delivery systems are very difficult to make yourself and most people working on specific diseases don't - they outsource it to core facilities that do it regularly.

You're thinking like a white coat, not like a hacker. A hacker asks: what can I easily do, and then what useful things can I do with it. What are easy tissues to get? Adipose tissue and blood. Electroporation is easy for introducing stuff. Think about what you can you do with such a system.

I do think that whatever results a self-treater got would be very difficult for others to leverage in the search for a cure.

I think you're too pessimistic, and it depends on the disease. Cancer is likely too messy and too complex. But for other diseases, cause and effect are pretty clearcut. There really is a long list of diseases where there are pretty obvious treatments using CRISPR that people just need to try out. Of course, a lot of that will probably also happen in places like China and Mexico, where authorities care less.

Re:I hope more people will do this

[Opportunist]

They tell you how to be? How so? If anything, they stopped treating "traditional" constellations with preference.

Re:I hope more people will do this

[ooloorie]

They tell you how to be? How so? If anything, they stopped treating "traditional" constellations with preference.

They are telling you that there ought to be no preference. That's very different from the government simply remaining silent on the question of family structure and child raising.

Re:I hope more people will do this

[Opportunist]

Permitting something is now proscribing not doing it? I don't remember the government demanding that people should now get divorced, become single moms and live in patchwork families.

Re:I hope more people will do this

[ooloorie]

Permitting something is now proscribing not doing it?

I'm sorry, you misunderstood; I simply used the word "tell" in the usual sense of "speak to".

I don't remember the government demanding that people should now get divorced, become single moms and live in patchwork families.

Indeed, it doesn't "demand" it, it merely forces other people to subsidize it it and tells people that it is a reasonable choice to live that way.

Re:I hope more people will do this

[Opportunist]

It isn't? How so? Because I'd really hate to be married against my will just to conform to some arbitrary standard.

Re:I hope more people will do this

[ooloorie]

It isn't?

It isn't what?

Re: I hope more people will do this

[Anonymous Cow Ward]

Blood is easy to get, but the stem cells - which are what you'd need to target to treat diseases long-term - are in the bone marrow, and are much harder to get at. Electroporation dramatically increases the risk of an immune response - it's been used in some vaccine development because of that - which makes it pretty unsafe for in vivo work. Maybe adipose tissue would work, but then what can you do with it? Many diseases aren't caused by defects in adipose tissue.

Yeah, pretty obvious treatments, but much harder delivery. Also, gene editing with CRISPR isn't as easy as you're making it out to be - knocking out a gene is pretty easy, but the efficiency of recombination is still generally too low for in vivo use. And leveraging the results depends more on the controls and whether it replicates in others than how clear-cut the effects are. One of the advantages of a clinical trial (at least in gene therapy) is that dose and endpoints are examined in a systematic way. There will definitely be some of that sort of work in places with less oversight, you're right.

Re:I hope more people will do this

[Anonymous Cow Ward]

I suspect there are a lot of researchers with HSV, HPV, HIV, and similar infections, which is what we're talking about here.

Much fewer than you'd think with HIV - the anti-retrovirals usually have some effects on your brain, and can interfere to some degree with your ability to reason. It's not impossible to do research when you're on those drugs, but it's definitely a lot harder. And if HIV was easily cured it would have been done by now.

Re:I hope more people will do this

[Anonymous Cow Ward]

That's true for some genes but not others. We know, definitively, that some genes are causative for specific diseases - Duchenne Muscular Dystrophy, for example. The dystrophin gene makes the dystrophin protein, which plays a key role in muscle cell force transduction and is lacking function in DMD patients. We know dystrophin's structure and we know, from looking at patients, a lot of ways it can get screwed up.

We can identify major splicing variants, so we generally know what portions of the gene actually code for protein, and some changes within that are clearly causative as well. An early stop codon, for instance, is a pretty good indication. Or if we can detect mRNA in cells of patients but no protein, then it's very likely a folding or processing defect, and we can probe the issue further with animal models. There are definitely some genes that aren't well-studied, but the ones that predominantly cause genetic diseases tend to get a lot of focus.

I'm not aware of any times when replacing a mutant allele with the "normal" one made things worse - it's certainly possible it could happen, but no result or an improvement are far more likely.

We know some parts of gene therapy appear to be safe in the reasonable long term - AAV directed to the liver, muscle, or retina hasn't had any major safety concerns (mostly efficacy, and that's improving dramatically) and they've been in some patients at least ten years.

Re: I hope more people will do this

[ooloorie]

Blood is easy to get, but the stem cells - which are what you'd need to target to treat diseases long-term - are in the bone marrow, and are much harder to get at. Electroporation dramatically increases the risk of an immune response - it's been used in some vaccine development because of that

Short lived differentiated cells combined with an immune stimulant? Lots of possible uses for that combination.

One of the advantages of a clinical trial (at least in gene therapy) is that dose and endpoints are examined in a systematic way.

Yeah, and one of the disadvantages is its enormous cost and lengthy duration, often (though not always) for negligible gains in knowledge or safety.

Re: I hope more people will do this

[Anonymous Cow Ward]

Which cells in the blood do you want to target? Red cells and platelets don't have DNA, and the immune cells are a very mixed population. Immune cells also aren't always short-lived; memory T and B cells can last a super long time. You also can't electroporate blood in vivo, you'd have to take it out and then reintroduce it, which is beyond most people to do safely AND loses the immune stimulant part of the equation.

I'd argue that clinical trials for gene therapy, while they do take a long time (which you need if you're modifying genes anyway) cannot be said to "often" result in negligible gains in knowledge or safety. Most gene therapy clinical trials to date have been pretty informative.

Re: I hope more people will do this

[ooloorie]

So, no matter what, the cells live too long, or they don't live long enough, and either immune stimulation is a problem or it's a missing feature. Your thinking is dominated by why things can't work, and how you need really complex and costly solutions, and how risky everything is. I don't blame you: it's traditional, safe, academic thinking. It's what you might have heard from an IBM researcher in the 1960's. It seemed reasonable until, well, personal computers came out in the mid-70's and changed everything.

I think you demonstrated more clearly than I ever could (1) why gene therapy has made such ridiculously slow progress, and (2) that the way to change that is to have outsiders come into the field without preconceptions and take their chances.

Re: I hope more people will do this

[Anonymous Cow Ward]

Not "no matter what". There's plenty you could do, if you knew what you were talking about. If YOU bring up short-lived blood cells and an immune stimulant, I'm going to point out why your approach won't work. But there definitely are things that *could* be done with blood, potentially even with basic medical supplies and less complicated reagents. You just haven't hit on any of them yet, because you lack basic knowledge about the things you're proposing.

My thinking is focused on genetic diseases, like DMD or Pompe's disease, because that's what I have experience in. There certainly are unique, cool ideas that I'm missing, and biotech is starting to get moving on those.

I think you're dramatically underestimating the time and effort required to actually show that something works, as well as the variability between individuals. Gene therapy has made slow progress for three reasons: one, we're still learning about what viral vectors work in which settings (and why), and working on non-viral vectors but they're mostly not good for anything you want to last more than a couple weeks. Two, there are a lot of diseases (including infections) for which there is no animal model or the animal model isn't effective at recapitulating the phenotype - and the researchers themselves don't have the disease or we don't know enough about it for them to be comfortable doing it to themselves. Three, with the focus being more on inherited genetic disorders, because that's often the major unmet need, there's understandably a lot of focus on making sure gene therapy lasts long enough and is safe.

All you've demonstrated is that outsiders coming in need to have even a basic understanding of what you're talking about, not that they'd be better or more effective at making progress.

Re: I hope more people will do this

[ooloorie]

If YOU bring up short-lived blood cells and an immune stimulant, I'm going to point out why your approach won't work

I didn't specify "an approach".

I think you're dramatically underestimating the time and effort required to actually show that something works

I didn't estimate any times.

All you've demonstrated is that outsiders coming in need to have even a basic understanding of what you're talking about

You're jumping to unwarranted conclusions.

If you are an "insider" as you claim, it merely shows to what low intellectual standards our field has sunk.

Re: I hope more people will do this

[Anonymous Cow Ward]

I didn't specify "an approach".

So we're just ignoring this then?

What are easy tissues to get? Adipose tissue and blood. Electroporation is easy for introducing stuff. Think about what you can you do with such a system.

You specified targets and a delivery method. Is that not "an approach"?

I didn't estimate any times.

One of your main points was that hackers/outsiders could speed things up and make the field progress faster than it currently is. You implied times would be shorter if outsiders got involved. I'm saying I don't think they would, because of the time it takes to know whether something is safe and effective.

You're jumping to unwarranted conclusions.

If you are an "insider" as you claim, it merely shows to what low intellectual standards our field has sunk.

I'll grant you that I made the conclusion that you weren't an insider, because I would have expected an insider to have a basic grasp on the underlying technology. As such, if you are an insider (as you're implying by saying "our"), then I'll have to agree the field has dropped its standards.

Re: I hope more people will do this

[Wycliffe]

The 4400 tv show did an interesting take on this. You had a 50/50 chance of either dying or getting a super power. Lots of people were signing up. I'm assuming in real life, the results would be similar. A drug company could never take that liability but there are plenty of people with terminal and/or debilitating illnesses that would take a 50/50 shot at being cured or dying.

Re:I hope more people will do this

[Opportunist]

Indeed, it doesn't "demand" it, it merely forces other people to subsidize it it and tells people that it is a reasonable choice to live that way.

How is it not a reasonable choice to live?

Re:I hope more people will do this

[ooloorie]

How is [single motherhood] not a reasonable choice to live?

Without massive government support, single motherhood is economically pretty much impossible because women can't simultaneously earn enough and take care of their kids. And even with government support, single motherhood statistically results in bad outcomes for kids and the mother. For example, most of the economic inequality between blacks/whites in the US is due to the consequences of single motherhood.

I would think that a reproductive choice that sets up your kids for a life of poverty, crime, and psychological problems might be called "not reasonable".

Re:I hope more people will do this

[Opportunist]

We should maybe see a difference between people of the same sex coming together, which is a choice, and being a single mother which is more often than not NOT the choice of the woman.

The main problem is here that they are not allowed to choose to not become a single mother...

Re:I hope more people will do this

[ooloorie]

and being a single mother which is more often than not NOT the choice of the woman.

A woman can use contraception, she can use abortion, she can give up the kid for adoption, she can leave the baby at a "safe haven baby box", she can even choose not to have sex before marriage. In what possible way is "being a single mother" not entirely and completely the choice of the woman?

The main problem is here that they are not allowed to choose to not become a single mother...

Again, who is "not allowing them" that? Who are you claiming is taking away their choice?

Darwin award nominee?

[mark-t]

[nt]

Re:Darwin award nominee?

[93 Escort Wagon]

Depends on what killed him. Despite the summary, we really have no reason to conflate his self-experimentation with his death.

Odds are, if anyone is paying attention in a few weeks, we'll find out he committed suicide in some conventional boring manner.

Re:Darwin award nominee?

[The Fat Bastard]

I nominate the guy who tried to get a selfie with a bear. Seriously, folks. Always ask the bear for permission before taking a selfie.

Re:Darwin award nominee?

[b0s0z0ku]

Suicide, drug overdose, or a malfunction in the flotation tank. Electricity + conductive salt water can be dangerous.

Re:Darwin award nominee?

[gweihir]

Indeed. Probably more of a meta-problem of being willing to take unreasonable risks. He may just have tried other things as well or ignored medical problems he had. Or, as you said, a meta-meta problem of being ad odds with reality and finally having deciding to remove it. The indicators for the first are strong, and the second thing is at least plausible.

Re:Darwin award nominee?

[b0s0z0ku]

They don't generally comment on actual causes of death until a full investigation has been done. Tox screens, etc.

Re:Darwin award nominee?

[Anonymous Coward]

I nominate the guy who tried to get a selfie with a bear. Seriously, folks. Always ask the bear for permission before taking a selfie.

We need more like him. LOTS more.

Make Natural Selection Great Again!

Re:Darwin award nominee?

[techno-vampire]

If you RTFA, you'll learn that he was found face down. Presumably, he drowned, but we don't know why he rolled over. Unless something interesting shows up in the autopsy, we may never know for sure.

Re:Darwin award nominee?

[b0s0z0ku]

It takes much less current to induce heart stoppage/afib than to cause visible damage.

Re:Darwin award nominee?

[martinX]

It was an new experimental flotation tank made by a startup who was taking on Big Tank.

OK, it was actually a washing machine.

Re:Darwin award nominee?

[bickerdyke]

OK, I'm pulling that hypothesis out of thin air, but I'm trying to do so in an Ockham-complete way.

1. Guy injects himself with probably inert liquid as dangerous as isotonic saline solution, but labled "untested drug"
2. Guy grows more and more anxious fearing for possible dangers, but it's too late
3. Guy is so afraid of what he may have done, starts to go insane. (Checkpoint 1: Reports of him loosing contact to the rest of his startup, irritating business descicions)
4. Guy decides he needs to relax. In a fancy and expensive way as considered normal by Silicon Valley Standards
5. Sensory deprivation makes the guy panic, doesn't find emergency exit, splashes and inhales salt water, rolls around and drowns.

Re:Darwin award nominee?

[MobileC]

If you RTFA, you'll learn that he was found face down. Presumably, he drowned, but we don't know why he rolled over. Unless something interesting shows up in the autopsy, we may never know for sure.

If you RTFA and then click a link to the original story, THEN you find out he was found face down.

Re:Darwin award nominee?

[Calydor]

Because nothing but drowning has ever killed a man that was found face down in the water.

Re:Darwin award nominee?

[mysidia]

A person found face down indicates either foul play or action taken by the deceased.

Or involuntary action where the deceased had turned over face into the water. In theory the high salt content SHOULD burn the nose and eyes causing the person to wake up immediately.

The number of drownings not involving a medical condition are not zero, but they're rare compared to how often people are using flotation tanks.

yeah

[supernova87a]

Seems like everything worked itself out for the best.

Re:yeah

[scottrocket]

I have mixed feelings about this: On the one hand, uncle Charlie tapped him on the shoulder, and gave him his eponymous prize; on the other hand, maybe an individual, as long as they don't pose a threat to others should be able to test something on themselves - personal choice and all that. Bleh.

Re:yeah

[HornWumpus]

The FCC did what?

Re:Visionnary retards

[Anonymous Coward]

Sometimes, but I question just how visionary some of these biohacker sorts are. To be a visionary, you need a goal and a plan. Saying that you want to use the next big thing to cure a disease is simple; actually following trough is the hard part. These people just hear the Crispr hype and think it is some cure all for every disease without any understanding of what they're talking about. Having good fundamentals in the biological sciences is absolutely essential, and I question how much actual knowledge these sorts have.

Don't misunderstand, there's nothing wrong with the idea of DIY Bio for people who have been screwed by the system as it stands (and believe me, it happens). Biotechnology should not be the property of just of ivory towers and corporate interests, and putting that into the hands of the people is a laudable goal. Still, if you don't know what you're doing, you probably shouldn't be doing it. I mean, you wouldn't try making fireworks without a basic understanding of chemistry and physics, would you? The Crispr gene editing system has a lot of potential over older gene editing mechanisms, sure, but all these people who think gene editing is some cure all just waiting to happen don't have a clue.

Re:Ketamine.

[ArmoredDragon]

Well, maybe he's not actually dead. Given how eccentric the guy is, maybe this is just phase 1 of his latest experiment: He wants to see if, with the power of CRISPR, he can become undead.

this guy doesnt fuck

[binarybum]

Biohacking sounds like the worst possible way to get herpes.

No evidence it was done by the "cure"

[bahwi]

While I doubt he came anywhere close to curing himself (when your cure is more buzzwords than products....) I don't think the attempt had anything to do with the death. The body is versatile for lots of those things, and the immune system and kidneys probably got rid of just about everything before any effect.

It was probably an accidental drowning of some type, drugs, overdose, or something. I doubt this is the first death in a sensory deprivation chamber....

Re: No evidence it was done by the "cure"

[Jfetjunky]

Yeah, I've yet to see any news outlet come out and directly say it was caused by his experiments. The seemingly conscious effort to leave it out makes me think they want you to assume that because it makes a more exciting story but the reality was that it was something way more common (like he passed out and drowned in the tank, od'ed in the tank from a common drug, etc)

Re:No evidence it was done by the "cure"

[mysidia]

I doubt this is the first death in a sensory deprivation chamber....

Police are still investigating the cause of his death.

Until more information is available... Occam's razor say, this the simplest
explanation: This was probably just another unfortunate fatal accident in a sensory
deprivation chamber...

NO it's not the first death in such a chamber.
These chambers can be quite dangerous.... others have died in them by cause of hyperthermia,
or drugs/alcohol toxicity. Drowning or electrocution are major risks.

This could also have been a suicide. From this person's documented past behavior.... it is possible the fellow was not sane and had some other issues; Most people aren't comfortable "Injecting themselves" with anything ---- he may have later injected himself with more dangerous stuff, such as heroine, LSD or other hallucinogenics shortly before going into this chamber.

Re:No evidence it was done by the "cure"

[Hognoxious]

A could cause B. Possible.

B could cause A. Not possible, since A happened before B.

C could cause both A and B.

I reckon C is stupidity.

Re:No evidence it was done by the "cure"

[Calydor]

Are there no drugs, poisons, or other bad-things that can take a while to kill a person after initial injection?

Re:No evidence it was done by the "cure"

[strikethree]

he may have later injected himself with more dangerous stuff, such as heroine

I am assuming an autocomplete issue here but my understanding is that you inject yourself into the heroine, not inject the heroine into yourself. ;)

Re:No evidence it was done by the "cure"

[mysidia]

There's been no evidence published that he was subjected to any slow-acting poisons.

Suspicious - A new Aaron Swartz?

[BlueCoder]

The title implies that he died from his treatment. He would have continuously been tested since injection in multiple sites across his body as well as blood work. Herpes itself is not fatal. A preliminary examination on the scene would be more informative. If it was his treatment I would have expected him to have been admitted to the hospital for weeks before death.

It sounds to me like depression and maybe a suicide. The FDA probably came down on him and told him he was blacklisted and no company he was associated with would ever get anything approved.

Could this be another Aaron Swartz?

Re:Suspicious - A new Aaron Swartz?

[mysidia]

It sounds to me like depression and maybe a suicide.

It sounds like a probable accident and gross negligence on the part of the SPA operators; failing to adequately monitor their customer's status while using a deprivation tank.

These chambers can be dangerous. There have been past cases where people died from hyperthermia, by floating in the warm fluid for too long a period of time. Use of certain drugs before entering the chamber or certain health conditions can put a person at risk of a medical emergency happening, And the facility OUGHT to be monitoring isolation chambers for potential issues --- although they probably were not, because such situations are rare enough to build complacency around the use of deprivation tanks, even though they have a possibility to be hazaardous, esp. if there is an equipment malfunction.

Lets all get our genes edited in Tijuana!

[AmazingRuss]

What could go wrong?

no the AMA killed him to keep there profits

[Joe_Dragon]

no the AMA killed him to keep there profits

Re:Visionnary retards

[ColdWetDog]

Fortunately, the world is rather Darwinian. Experiment on yourself - if you do manage to create something useful / helpful, great. Otherwise you're likely dead, certainly ill.

Given how many humans are running around trying to do things, it is hardly surprising that wack noodle narcissists will get some media exposure, claim their 15 minutes of fame and then .... explode. Perhaps there will be some sort of middle ground that will use the new techniques and their own knowledge to advance things. Perhaps not.

I do fail to see why people think that just because you're doing something in your garage, you have a leg up on the tens of thousands of grad students and post docs who are working in better equipped labs with more intellectual support. If this stuff were that easy, there would be happy molecular biology departments throughout the world.

It's not easy at all, CRISPR or not.

Big pharma did it!

[DrXym]

That or he's a fucking idiot.

Dead or suicided?

[Anonymous Coward]

The U.S. economy circulates much thanks to the enormous amount of money the population has to put into Big Pharma and health care.

This person and his research was a big threat to that money and the economy.

Re: Visionnary retards

[SirSlud]

Fortunately, the world is rather Darwinian.

No it isn't. This is a monumentally stupid thing to be believe, right up there with believing in a just world.

Re:Ketamine.

[www.goatse.ru]

He was found face down. He is dead, and it looks like he did not die of herpes or his attempted cure.

Take home from this

[AndyKron]

Live hard die in a flotation tank.

Re: Visionnary retards

[jessepdx]

Darwin is the theory of the natural selection of the most well adapted. Not really applicable here. Maybe Hebert Spencer is who you were thinking...

Re: Visionnary retards

[Wycliffe]

The world is "rather darwinian" just as the world is somewhat just. Sure there is a huge spectrum there. People can do stupid stuff and/or immoral stuff (especially the rich and powerful) and get away with it for a long time but there is a pendulum there and for the majority of people karma eventually catches up. Sure bad things happen to good people and good things happen to bad people but on average more bad things happen to bad people. And that's not even counting the having to look yourself in the mirror and the constantly looking over your shoulder that comes with being immortal. Justice mostly gets served most of the time to the criminals and the innocents are mostly left alone.

Re:Visionnary retards

[sheramil]

Biotechnology should not be the property of just of ivory towers and corporate interests, and putting that into the hands of the people is a laudable goal.

Please read Bruce Sterling's story "Our Neural Chernobyl".

When you die in a sensory deprivation tank

[Opportunist]

So ... he died of boredom?

Stuff for a crime novel: perfect alibi if murder

[Erikderzweite]

Such a tank is perfect for concealing time of death: body is permanently kept warm.

Maybe I've watched too much Columbo.

Re: Visionnary retards

[Dorianny]

There is no "karmic pendulum," just the Law of averages. Statistics is a cruel mistress, especially to those addicted to "positive thinking"

Why not to experiment on yourself like this:

[Hallux-F-Sinister]

It may be a touch early to judge, but it sounds as if this BIOHACKER bricked himself, and there was no one around to hold his power, and volume up and down buttons at the same time after he tried to reflash his BIOS. Now he will need a new one... of himself.

Re: Ketamine.

[LifesABeach]

Thank you, it rarely happens that an A/C makes me grin.

Darwin Award

[jbssm]

Darwin Award material right there.

Re:Stuff for a crime novel: perfect alibi if murde

[mysidia]

You've watched too much.... there are other ways to ascertain how long ago blood stopped flowing through the body, etc. Although the high salt-content bath could double as an embalming solution as well.

Do "yes" or do "no". Not do "guess so".

[Hognoxious]

You gave "being alive" as your evidence that you knew "enough about gene therapy" to give an informed opinion.

Which is true.

I also know enough about flying to have not killed myself in a plane crash and enough about nuclear bombs to have not irradiated myself because a screwdriver slipped.