Not only that, but the amount of viral payload went up after treatment. Additionally his white blood cell count went up, and he got a rash and nausea a couple of days after trying this, which could point to his immune system attacking his homebrew injection. This was painful to read, and I won't be surprised if his future attempts with a larger dose result in serious life-threatening effects.
He mentioned viewing his own blood as poison after the HIV diagnosis. I can't even imagine what that's like. Definitely empathize with his need to be rid of it, but hopefully he _fully_ understands that he's experimenting with his own life, and that treatment for HIV in modern medicine means you can live a long and happy life.
Note that cause and effect have not been established here. This guy has been going without HAART two years, rashes and nausea are probably not terribly uncommon. The fact that the white blood cell count went up is likewise unsurprising: it’s a typical symptom of an unspecific immune response after infection, which is exactly what you’d expect if you inject yourself with foreign organic material. It’s puzzling that the article didn’t explain this because it’s entirely expected.
Also, he _stopped taking anti-retrovirals_. Modern HIV treatment is really quite effective and you shouldn't discontinue it without good reason. Hopefully he starts again.
Despite claiming the opposite, this guys is incredibly stupid. I get the desire to hack things and make them better, I realize that we understand more about biology then ever before, but man these guys are playing with fire. You've only got one body and most people don't realize how easy it is to destroy your liver, immune system, kidneys, etc.... byond repair.
People participate in extreme sports, risking life and limb, all the time. Unlike being the N-thousandth person to summit Everest, this guy at least has a chance—however small it may be—at improving the human condition.
It's not your place to tell people what to do with their own bodies.
There is comment and then there is literal ad hominem. "This guy is incredibly stupid." Lots of people do lots of things that—on the outside—look stupid. Hell, I would wager the odds of having a lasting impact in the world by choosing to join a startup are lower than this.
Saying — based on evidence — that somebody is stupid isn’t an ad hominem. At worst it’s shorthand for “his actions are stupid”.
Which, given the evidence, they unarguably are: Virtually every expert in the field, as well as other biohackers, think that what he’s doing is a bad idea, and based on dangerous superficial knowledge. The comparison to Barry Marshall (the stomach ulcher guy) is particularly unhelpful since Marshall was an expert in the field, and acting on a solid theory and with a contingency plan. But even his actions are still rightly called reckless.
All that said, I’m still impressed with Roberts’ self-experiment, and curious about the results of the long-term follow-up. But it is stupid.
ad hominem is "He's stupid, therefore he's wrong about some claim."
"He did a stupid thing, therefore he's stupid" is not ad hominem. Inflammatory, subject to a huge debate about definitions, perhaps even wrong? Sure. But if you expand it out reasonably (a sample intervening premise: "People who do stupid things are stupid."), the logic is valid, in the technical sense. To attack the conclusion requires attacking something else about the premises, the most obvious fruitful avenue being the definition of "stupid" in question.
(Although, spoiler, that pretty much ends in "I have my definition and you have yours, and by mine, yes, he's stupid, but by yours, no, he's not.", and as long as we don't mistake the map for the territory and argue as if the definition of "stupid" that is used by someone has any power over the real world, is a perfectly acceptable result.)
(Incidentally, I consider my sample intervening premise up there as stronger than I personally would use the word stupid. I like to think of myself as generally not stupid, but I've done stupid things. Still, with that premise, the argument is logically valid.)
That would almost sound altruistic of him. But then again, why does he feel the need to advertise it? Is he getting paid to advertise it so others, who understand the risks even less than he does, accept to become guinea pigs for this experiment?
There's a difference between doing the research yourself and deciding to put your own body at risk "for the greater good" or even "for fun", and doing it because you saw a cool ad/PR story about it. It's why tobacco advertising was banned, too. You don't want the mobs to suddenly "want their genes enhanced, too!"
> That would almost sound altruistic of him. But then again, why does he feel the need to advertise it?
The two are not mutually exclusive. Why do any non-profits and open source projects advertise? Advertising is a fundamental component of all projects. Any perception otherwise is just the ol' bucket-of-crabs.
In that situation it is your place to intervene because the person has his or her willpower and logical mind hijacked by alcoholism. We are creatures of logic but also of passion. Sometime our body will do things that our mind don't want them to. In those situation, help is required. The person can't defend itself so it's your place to help them.
Sure but people still have bodily autonomy. Nobody has the right over anyone's body. You can tell them the risks, you can try to convince them to get rehab, but they ultimately have the right to do what they want with their body. Whether or not you disagree with someone's right is irrelevant, it's still one of their inalienable human rights.
It's really not that simple and you're confusing things. Sure, we have the right not to be molested or have treatment forced on us, but that's completely different from the idea of having the right to self-harm. There is a common fallacy, that we have a moral right to do whatever we wish with out bodies. We don't. This has nothing to do with anybody else having a right over anyone else or the law (we must distinguish between MORAL rights and legal rights, or I could just as easily say that legislation could change the right you believe you have). Even if you were the only person left on the planet, you would not have the moral right to self-harm. Why? Because we do not have the right to moral evil and self-harm is a moral evil.
Moreover, unless those engaged in genetic experimentation sterilize themselves, it also poses risks to population genetics.
I'm not actually confusing anything, and I don't see where your definition of "Moral evil" is coming from.I don't see why the right to self-harm is immoral. Tattoos and piercings are self-mutilation. I agree on the risk of population genetics and think that sterilization should be required before even attempting such a procedure, but that's because you're risking the well being of others, not self.
Right, but the BBC wouldn't dare run an article about squirrel suits without talking about how dangerous they actually are. In this case they should have done the same thing. I'm all for people experimenting on their own bodies, but when we talk about what they're doing we better portray the magnitude of the risks they're dealing with.
Do you have a chronic illness that will affect your quality of life and probably shorten it significantly?
I do and if there was a legit 1% chance I could cure it with a miracle treatment I’d try it no matter the side effects/risks. Worst case scenario I’d just kill myself.
This isn’t about “hacking things” to make them better it’s about having a bit of hope your life isn’t going to be horrible forever.
Nobody `decides` anything. Some people just don't have the funds to afford these treatments, and as much as it sucks, these treatments take resources and someone needs to cover that.
Except HIV isn't a death sentence. You can manage it with tools that already exist while these things are tested. If you were dying soon, sure, I get wanting to try the moonshot. That's not the situation we are talking about.
My thoughts exactly. Regardless of whether HIV is a "death sentence" or not in this day and age, it's at best an extremely undesirable illness that many would give everything they could to be rid of forever.
What they did was obviously stupid, but desperation makes you do stupid things.
Wrong, worst case scenario isn't that he just kills himself. The worst case scenario is someone else points to this story as justification to sell their off-the-shelf gene therapy kit and thousands of naive people die as the result.
A great project which attempts to consider many of the possible things that people with a terrible illness think of trying to fix it is ALS Untangled, http://http://alsuntangled.com
A group of experts on ALS (aka Motor Neurone Disease or MND) evaluates various alternative therapies for the condition, considering factors including scientific plausibility, risks, etc. Some of the proposed treatments are totally implausible, like injecting something into a place where there's no reason to expect it would have any effect. Others are obviously scams. Others are conceived and sold by well-meaning people who make sick people feel some hope thanks to a positive and helpful demeanor, but who unfortunately don't have anything medically useful to offer.
With the proper treatment, HIV has a negligible impact on your quality of life and no statistically significant impact on your life expectancy. Modern antiretroviral drugs have minimal side-effects and most patients experience no long-term side-effects whatsoever.
Highly active antiretroviral treatment is a goddamned miracle. One pill a day turns a death sentence into a complete non-issue. I can't help but question the mental health of someone who would reject such an astonishingly good treatment in favour of being a human guinea pig.
Yes, it is very dangerous. How many people are doing dangerous and stupid things like smoking, drinking or eating too much, climbing cliffs, ... At least there is a small chance he gets some benefit.
Sure but the real risk here is normalizing self administered gene-therapy. When people read about it in the BBC they will naively assume its safer than it actually is. This opens the market to layperson when in reality we should be guarding against this stuff until its further along.
Unless you have a horrible incurable disease, you have absolutely no right to comment like this. You have no idea what it is like to live like that. People with such diseases are often on the verge of suicide anyway - you are unlikely to be able to put yourself in their position sufficiently to be able to judge their choices.
People who use standard treatment options for HIV lead normal lives. This is a kid throwing a tantrum because he doesn't want to eat his vegetables. Maybe I can't really understand why he's throwing his tantrum, but I can certainly judge it. What he did wasn't smart, regardless of his emotional state.
You can't fairly compare a deadly chronic disease to "not wanting to eat his vegetables'.
By calling it "his emotional state" you are, again, disregarding the disease and the effects of it on many aspects of his life. It's not his "emotional state" as you call it, it's a chronic deadly and debilitating disease which is afflicting him.
You are being dismissive and disregarding something which you appear to know nothing about. See my comment above. You have no right to pass judgement.
It is not a deadly disease if he follows the standard course of treatment. I'm not comparing HIV to not eating vegetables. I'm comparing his refusal to take antiretroviral drugs to not wanting to eat his vegetables.
Do we have to throw all knowledge out the window and say anything someone with a harsh life does is smart? What about having HIV makes it a good idea to eschew effective treatment for 2 years and then inject untested bullshit?
Sometimes the best advice appears to be dismissive and disregarding and has no right to pass judgement.
The people here recommending non experimental HIV treatment aren't saying so to hurt him. They are saying it because they don't want him to hurt himself needlessly.
Someone with HIV who takes their antiretroviral therapy as prescribed has the same life expectancy as someone who doesn't have the virus. Most people only need to take one pill a day. The side-effect profile is extremely good - some people get diarrhoea or nausea during the early stages of treatment, but most people experience no significant long-term side-effects. The vast majority of people will have an undetectable viral load within a few months of starting treatment, meaning that they have effectively no chance of passing on the infection.
As chronic diseases go, HIV really isn't particularly unpleasant. The majority of people aged over 60 are suffering from something far worse - hypertension, arthritis, diabetes, ischaemic heart disease, COPD etc.
The gentleman mentioned in the article is behaving in an incredibly reckless fashion. He has rejected a safe and effective treatment in favour of something completely untested, for no obvious benefit. He is clearly suffering, but I think his problems are primarily psychological rather than biomedical.
What you think you know about the experience of having a disease like HIV from passive conjecturing is nowhere what it is like actually having it, including "biomedical" symptoms.
I'm not here to try to educate you on all of the nuances of it in a comment, but suffice to say that you would not be so cavalier if you found yourself infected with HIV.
> Mark Connors, the lead NIH scientist who discovered the N6 antibody, was among the viewers.
> Connors was unimpressed with the scientific reasoning behind the treatment.
"These seem like very smart young men and they have command of some of the facts, but not all the facts," he said.
> "For the most part, the rules aren't what take so long [in drug development]," he added. "It's not the FDA sitting on drugs. The reality is this is a deliberative process."
It's curious, the hard 'scientific' challenge is finding the N6 antibody sequence. That code/blueprint produces the atomically-precise nanomachine that is capable of neutralizing HIV. That work is done. Here it is:
Yet the current, engineering-style challenge is getting that protein sequence expressed in the right place, at the right time, without disturbing its environment, etc.
It's hard to compare the difficulty or danger of trying a therapy with 'scientific' risks versus 'engineering' risks. At first glance it might appear that now that the scientific problem has been solved (to a particular extent), that the engineering challenge is easy. However, the details really do matter. And not having all the facts, can in fact be lethal. On the other hand, to some extent, the scientific challenge really is the limiting capability, whereas the engineering challenge could be considered one of degree and risk. One this guy, for better or worse, was willing to take.
You’re exactly right. What I don’t see is how Roberts’ experiments help advancing that engineering challenge; the article gave no details about the injection, such as the vector being used to get the genetic material into cells, or the carrier, etc.
I was a bit confused until I noticed that this is only a partial sequence. A full antibody is considerably larger, and you also need to get the disulfide bonds formed correctly for it to work.
And I don't think it is entirely clear if expressing that antibody alone is enough to defeat HIV, especially as it targets the immune system itself. If antibodies are the solution, then developing a vaccine that triggers the production of suitable antibodies is probably the better way forward.
Yep. It's just the heavy chain. If it's expressed in vivo (in the right place) it should form properly. And N6 isn't a full cure, but it has shown therapeutic benefit. Details do matter, but the general idea still stands.
The vaccines that trigger antibody production actually are being made.
> It's curious, the hard 'scientific' challenge is finding the N6 antibody sequence.
The discoverer of N6 doesn't seem to agree:
> As potent as N6 is, HIV can still develop a resistance to it, making it a poor candidate as a "monotherapy" or stand-alone treatment, said Connors.
If Connors is right, finding the N6 sequence alone, and in fact even delivering a functional N6 with a perfectly safe and effective vector, probably isn't adequate. Given the genomic integration of HIV, that's no surprise.
There will be many more people doing this sort of thing in the years ahead.
The main reason not to do it now for those genetic alterations known to exist in humans and have beneficial efforts, or to address genetic disease, would be that presently available approaches do not have reliable, high degrees of transfection. The cell coverage is low.
That is being solved. The work on gene therapy for muscular dystrophy is one line of research to watch as a marker of progress on this front.
As soon as reliable, high-enough levels of transfection are a reality, there will be a lot of unofficial gene therapy going on. The FDA and other regulators impose enormous cost and delay, as well as removing the agency of patients and those who desire enhancement rather than therapy. They will be bypassed, just as they were bypassed for stem cell therapies.
> "Tristan Roberts is completely within his rights according to the FDA and the rule of law in this nation… to self-experiment on himself in any way that he deems medically appropriate. It is his body and it is his right."
Any doctor or scientist making it possible for him to do so, however, is very much NOT within their rights and shall be keelhauled for a year. And that's if it goes well. If it goes wrong ...
(unless there is explicit permission from the ethical board of a hospital)
> Another thing that concerned scientists about Ascendance was the lack of detailed information on the company's website - there's no phone number, nor a list of employees or advisors. Traywick said this is in part due to proprietary reasons and in part because the company is still so young. But he also said he needs to obscure the identities of the working scientists who are biohacking for Ascendance on the side, to avoid opening them up to legal or reputational risk.
Heh ... you mean reputational risk because they're experimenting on humans ? Yeah, there's government institutions that take a really dim view of such practices.
The thing is, even if those humans "know" what they're doing (we're talking about a 28 year old programmer. I don't feel like I'm going out on a limb when saying his knowledge of HIV is less than complete). Besides, it's not like even perfect knowledge of all HIV research would enable one to predict the outcome of this experiment with sufficient certainty.
So there is no informed consent here. This is experimenting on humans. That he's "paid" for it (in maybe getting cured, not quite in money) doesn't change that fact.
I think yours is a good analysis. I think that there are ethical frameworks that can be used to support what the subject of this article has done to himself. The main ethical problem is that of the people who are providing the untested therapy to this person, outside of the established norms, putting the subject at risk while attempting to use the subject's autonomy as their shield.
Right; quacks were the norm until the medical profession organized.
Its fair to argue that the AMA etc have overstepped, are protectionist etc. But we surely don't want to throw out the baby with the bath water. We want to hold medical practitioners to some standard. Which probably excludes preying on vulnerable people for naieve experimentation?
Everything else aside, there was absolutely no way that this was going to work. Injecting plasmids under your skin and expecting it to change your genes is like pouring nitrous oxide on your steering wheel and expecting your car to go faster.
Even if by some miracle all of the exposed cells had decided to incorporate these random, bacteria-looking rings of DNA from the interstitial fluid into their nuclei, IT WAS INJECTED INTO THE ADIPOSE TISSUE OF HIS SKIN. ADIPOSE TISSUE DOES NOT MAKE ANTIBODIES.
I'm baffled how anyone with an ounce of expertise thought this would do anything.
68 comments
[ 3.2 ms ] story [ 110 ms ] threadIt's not your place to tell people what to do with their own bodies.
Which, given the evidence, they unarguably are: Virtually every expert in the field, as well as other biohackers, think that what he’s doing is a bad idea, and based on dangerous superficial knowledge. The comparison to Barry Marshall (the stomach ulcher guy) is particularly unhelpful since Marshall was an expert in the field, and acting on a solid theory and with a contingency plan. But even his actions are still rightly called reckless.
All that said, I’m still impressed with Roberts’ self-experiment, and curious about the results of the long-term follow-up. But it is stupid.
"He did a stupid thing, therefore he's stupid" is not ad hominem. Inflammatory, subject to a huge debate about definitions, perhaps even wrong? Sure. But if you expand it out reasonably (a sample intervening premise: "People who do stupid things are stupid."), the logic is valid, in the technical sense. To attack the conclusion requires attacking something else about the premises, the most obvious fruitful avenue being the definition of "stupid" in question.
(Although, spoiler, that pretty much ends in "I have my definition and you have yours, and by mine, yes, he's stupid, but by yours, no, he's not.", and as long as we don't mistake the map for the territory and argue as if the definition of "stupid" that is used by someone has any power over the real world, is a perfectly acceptable result.)
(Incidentally, I consider my sample intervening premise up there as stronger than I personally would use the word stupid. I like to think of myself as generally not stupid, but I've done stupid things. Still, with that premise, the argument is logically valid.)
There's a difference between doing the research yourself and deciding to put your own body at risk "for the greater good" or even "for fun", and doing it because you saw a cool ad/PR story about it. It's why tobacco advertising was banned, too. You don't want the mobs to suddenly "want their genes enhanced, too!"
The two are not mutually exclusive. Why do any non-profits and open source projects advertise? Advertising is a fundamental component of all projects. Any perception otherwise is just the ol' bucket-of-crabs.
Come on, that's ridiculous.
E.g., if a loved one is abusing alcohol, it is definitely your place to intervene.
I think it is very well possible to have your logical mind hijacked by a possible cure for a disease.
Moreover, unless those engaged in genetic experimentation sterilize themselves, it also poses risks to population genetics.
I do and if there was a legit 1% chance I could cure it with a miracle treatment I’d try it no matter the side effects/risks. Worst case scenario I’d just kill myself.
This isn’t about “hacking things” to make them better it’s about having a bit of hope your life isn’t going to be horrible forever.
This is also the rabbit hole of how quackery thrives, parasiting off the hope or desperation of ill people.
https://www.spectator.co.uk/2014/04/why-id-rather-have-hiv-t...
What they did was obviously stupid, but desperation makes you do stupid things.
A group of experts on ALS (aka Motor Neurone Disease or MND) evaluates various alternative therapies for the condition, considering factors including scientific plausibility, risks, etc. Some of the proposed treatments are totally implausible, like injecting something into a place where there's no reason to expect it would have any effect. Others are obviously scams. Others are conceived and sold by well-meaning people who make sick people feel some hope thanks to a positive and helpful demeanor, but who unfortunately don't have anything medically useful to offer.
Highly active antiretroviral treatment is a goddamned miracle. One pill a day turns a death sentence into a complete non-issue. I can't help but question the mental health of someone who would reject such an astonishingly good treatment in favour of being a human guinea pig.
https://www.aidsmap.com/Life-expectancy-near-normal-in-peopl...
Just to be clear your statement is 100% false:
http://nymag.com/health/features/61740/index3.html
Outcome: http://www.bbc.co.uk/news/health-22556736
By calling it "his emotional state" you are, again, disregarding the disease and the effects of it on many aspects of his life. It's not his "emotional state" as you call it, it's a chronic deadly and debilitating disease which is afflicting him.
You are being dismissive and disregarding something which you appear to know nothing about. See my comment above. You have no right to pass judgement.
Do we have to throw all knowledge out the window and say anything someone with a harsh life does is smart? What about having HIV makes it a good idea to eschew effective treatment for 2 years and then inject untested bullshit?
The people here recommending non experimental HIV treatment aren't saying so to hurt him. They are saying it because they don't want him to hurt himself needlessly.
As chronic diseases go, HIV really isn't particularly unpleasant. The majority of people aged over 60 are suffering from something far worse - hypertension, arthritis, diabetes, ischaemic heart disease, COPD etc.
The gentleman mentioned in the article is behaving in an incredibly reckless fashion. He has rejected a safe and effective treatment in favour of something completely untested, for no obvious benefit. He is clearly suffering, but I think his problems are primarily psychological rather than biomedical.
I'm not here to try to educate you on all of the nuances of it in a comment, but suffice to say that you would not be so cavalier if you found yourself infected with HIV.
> Connors was unimpressed with the scientific reasoning behind the treatment. "These seem like very smart young men and they have command of some of the facts, but not all the facts," he said.
> "For the most part, the rules aren't what take so long [in drug development]," he added. "It's not the FDA sitting on drugs. The reality is this is a deliberative process."
>RAHLVQSGTAMKKPGASVRVSCQTSGYTFTAHILFWFRQAPGRGLEWVGWIKPQYGAVNFGGGFRDRVTLTRDVYREIAYMDIRGLKPDDTAVYYCARDRSYGDSSWALDAWGQGTTVVVSA [1] [2]
Yet the current, engineering-style challenge is getting that protein sequence expressed in the right place, at the right time, without disturbing its environment, etc.
It's hard to compare the difficulty or danger of trying a therapy with 'scientific' risks versus 'engineering' risks. At first glance it might appear that now that the scientific problem has been solved (to a particular extent), that the engineering challenge is easy. However, the details really do matter. And not having all the facts, can in fact be lethal. On the other hand, to some extent, the scientific challenge really is the limiting capability, whereas the engineering challenge could be considered one of degree and risk. One this guy, for better or worse, was willing to take.
[1] https://www.ncbi.nlm.nih.gov/protein/1079417984
[2] http://www.cell.com/immunity/fulltext/S1074-7613(16)30438-1
And I don't think it is entirely clear if expressing that antibody alone is enough to defeat HIV, especially as it targets the immune system itself. If antibodies are the solution, then developing a vaccine that triggers the production of suitable antibodies is probably the better way forward.
The vaccines that trigger antibody production actually are being made.
The discoverer of N6 doesn't seem to agree:
> As potent as N6 is, HIV can still develop a resistance to it, making it a poor candidate as a "monotherapy" or stand-alone treatment, said Connors.
If Connors is right, finding the N6 sequence alone, and in fact even delivering a functional N6 with a perfectly safe and effective vector, probably isn't adequate. Given the genomic integration of HIV, that's no surprise.
The main reason not to do it now for those genetic alterations known to exist in humans and have beneficial efforts, or to address genetic disease, would be that presently available approaches do not have reliable, high degrees of transfection. The cell coverage is low.
That is being solved. The work on gene therapy for muscular dystrophy is one line of research to watch as a marker of progress on this front.
As soon as reliable, high-enough levels of transfection are a reality, there will be a lot of unofficial gene therapy going on. The FDA and other regulators impose enormous cost and delay, as well as removing the agency of patients and those who desire enhancement rather than therapy. They will be bypassed, just as they were bypassed for stem cell therapies.
Any doctor or scientist making it possible for him to do so, however, is very much NOT within their rights and shall be keelhauled for a year. And that's if it goes well. If it goes wrong ...
(unless there is explicit permission from the ethical board of a hospital)
> Another thing that concerned scientists about Ascendance was the lack of detailed information on the company's website - there's no phone number, nor a list of employees or advisors. Traywick said this is in part due to proprietary reasons and in part because the company is still so young. But he also said he needs to obscure the identities of the working scientists who are biohacking for Ascendance on the side, to avoid opening them up to legal or reputational risk.
Heh ... you mean reputational risk because they're experimenting on humans ? Yeah, there's government institutions that take a really dim view of such practices.
The thing is, even if those humans "know" what they're doing (we're talking about a 28 year old programmer. I don't feel like I'm going out on a limb when saying his knowledge of HIV is less than complete). Besides, it's not like even perfect knowledge of all HIV research would enable one to predict the outcome of this experiment with sufficient certainty.
So there is no informed consent here. This is experimenting on humans. That he's "paid" for it (in maybe getting cured, not quite in money) doesn't change that fact.
Its fair to argue that the AMA etc have overstepped, are protectionist etc. But we surely don't want to throw out the baby with the bath water. We want to hold medical practitioners to some standard. Which probably excludes preying on vulnerable people for naieve experimentation?
Even if by some miracle all of the exposed cells had decided to incorporate these random, bacteria-looking rings of DNA from the interstitial fluid into their nuclei, IT WAS INJECTED INTO THE ADIPOSE TISSUE OF HIS SKIN. ADIPOSE TISSUE DOES NOT MAKE ANTIBODIES.
I'm baffled how anyone with an ounce of expertise thought this would do anything.