
Why I injected myself with an untested gene therapy - klmr
http://www.bbc.co.uk/news/world-us-canada-41990981
======
candiodari
> "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.

~~~
carbocation
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.

~~~
JoeAltmaier
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?

------
carbocation
> 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."

~~~
toufka
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:

>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](https://www.ncbi.nlm.nih.gov/protein/1079417984)

[2]
[http://www.cell.com/immunity/fulltext/S1074-7613(16)30438-1](http://www.cell.com/immunity/fulltext/S1074-7613\(16\)30438-1)

~~~
fabian2k
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.

~~~
toufka
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.

------
Areading314
Tldr: guy tries to cure his hiv with home made gene therapy. It didn't work.

~~~
CommentCard
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.

~~~
beams_of_light
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.

~~~
wellboy
Isn't HIV with the current medication "cured", since with viral load below the
limit of virus tests, a person cannot transmit the virus anymore?

------
reasonattlm
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.

------
grey413
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.

~~~
AstralStorm
Adipose tissue is not a single cell type. It has antigen presenting cells too
(dendritic cells), though not as present as in nearer skin.

------
kanzure
Relatedly, here's a transcript of a recent talk about DIY gene therapy:
[http://diyhpl.us/wiki/transcripts/diy-human-gene-therapy-
wit...](http://diyhpl.us/wiki/transcripts/diy-human-gene-therapy-with-crispr/)

------
b34r
So basically they’re engineering a strain of N6-resistant HIV. Thanks guys.

~~~
AstralStorm
Good thing HIV is not too contagious.

------
bognition
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.

~~~
paulcole
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.

~~~
Ralfp
> 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.

