Why I injected myself with an untested gene therapy
bbc.co.uk
bbc.co.uk
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?
> 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.
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.
It'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:
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.