7 ms·

As a parent of a child with a genetic disorder for which it is perfectly possible to develop a therapy using current technology, I'm delighted to see that bioha

As a parent of a child with a genetic disorder for which it is perfectly possible to develop a therapy using current technology, I'm delighted to see that biohackers are stirring things up. Let's hope this inspires the industry to rethink their approach to drug development.

Sporktacular 4y ago
I'd imagine they'll stir up the pharmaceuticals market as much as meth cooks did. If someone makes an actual advancement with these kits, watch him get bought out tout de suite.
ad404b8a372f2b9 4y ago
Big mood, I've been fantasizing about a building a wet lab at home for years. There are like 5 people actively doing research on my illness worldwide and the latest experimental treatment would be two grands a week at retail prices.
GTP 4y ago
I'm sorry for your child, but I'm not delighted. The guy that you can see in one of the pictures drinking from a glass recipient was in a Netflix documentary (I can't remember the title from top of my mind) where he was advocating for everyone being able to use genetic engineering for self-improvement, even without any previous knowledge of genetics. And this is what I take issue with. Sure genetic engineering has a lot of potential and could be used even to treat your child, but as every powerful tool, it has to be used by capable hands. Putting it freely in the hands of people that don't fully understand it (and I'm myself into that group) has the potential of creating great damages.
- josalhor 4y ago
  > The guy that you can see in one of the pictures drinking from a glass recipient was in a Netflix documentary (I can't remember the title from top of my mind) where he was advocating for everyone being able to use genetic engineering for self-improvement, even without any previous knowledge of genetics. You mean the documentary unnatural selection. I have seen it, but I recall something quite different. He did infact advocate that at some point people will use this technology without understanding it. It surely feels like a premature opinion, but in retrospect people use many life changing technologies without understanding them either Does everyone understand what they eat? how electricity works? how their smartphone works? the drugs their doctor prescribes?
  - GTP 4y ago
    >Does everyone understand what they eat? how electricity works? how their smartphone works? the drugs their doctor prescribes? True, but you always have to balance them with the potential issues that could arise. I don't understand how drugs works, and that's why I need a doctor's prescription to take them. Many people don't know much about electricity, and that's why there are laws regulating how electric wirings have to be made and that say that only trained electricians can do wirings in homes. Many people don't understand how smartphones work, but what's the greatest damage that can result from this and how likely is it to happen?
    - josalhor 4y ago
      Absolutely agree. And while I don't recommend anyone to try this out on a DIY basis, historically a lot inventions we take for granted and have made our life better came from people literally tinkering around with stuff and slowly figuring out what works.
    - gptgpp 4y ago
      I mean... regulations are actually a lot more flexible than you're implying. I was looking to wire up some solar panels to a cottage in the countryside. Since municipal regulations didn't apply, provincial ones did, which were that if you've built the structure for your own occupancy and follow the electrical code, this is completely legal. So the code applies, but it's not restricted to trained electricians in some cases. Same goes for drugs in much of the world. Personally I think it's a little ridiculous people need to get a script for stuff like viagra or tretinoin or finasteride. It becomes almost farcical when online clinics exist which will do a consultation without obtaining medical records or even seeing you via video and write you a script. Or that celebrities can get private doctors who will write them whatever. Or when you consider most countries outside NA and the EU where you can get pretty much whatever you want OTC. Not to mention you can order TONS of different research chemicals and "nootropics", completely legally, online. If you were to pass a regulation that was essentially "only registered genetic engineers can experiment in any way with this" it would be way more restrictive than anything we have for pharmaceuticals, or even domestic electricity. What you're suggesting would be on par with regulations for nuclear technology. IDK seems maybe a bit excessive...
- hansvm 4y ago
  Starting from a baseline of people being able to make rational choices that further their own goals, who cares? Just don't go out of your way to make it seem safer than it is, and let people captain their lives through whatever risks they see fit.
- gptgpp 4y ago
  I'm inclined to agree with you; the thought of just "some dude" mucking about with the genetics of a virus is horrifying. And yet, computers are extremely powerful tools, arguably the most powerful we have created. And look what free access to them has accomplished... Sure, it has caused quite a bit of cyber crime, but it's all balanced out by a massive amount of open and freely exchanged innovation. Now imagine an alternate history where we somehow restricted access to programming to people with computer science degrees working under registered companies... I think that history would be pretty regressive. So I think your reaction is understandable, I share it, but also hold some significant doubts.
  - imachine1980_ 4y ago
    You can't kill yourself writing c++ code, a buggy local server means your webpage is down, you aren't advocating for making your own insulin analyzer firmware, and using it for people whiout diabetes symptoms.
    - gptgpp 4y ago
      You can absolutely kill yourself writing C++ code... To my shame, I almost did when I was fucking around with a microcontroller hooked up to some fairly powerful motors. Not everyone uses code to make smartphone apps and video games, or computer applications. A vast amount is used to control everything from your car to your toaster :/ edit: Oh, I also botched the charging for some lithium ion cells and caused them to combust. Shit, now I feel like I'm refuting your point about death-by-C++, but also supporting that we need more regulations to protect against idiots like myself.
      - GTP 4y ago
        >A vast amount is used to control everything from your car to your toaster :/ True, and hopefully after the Therac-25 incident we learned that, while it is generally fine having people playing with programming, for certain applications it is best to leave it to professionals with a deep understanding of what they're doing. >Shit, now I feel like I'm refuting your point about death-by-C++, but also supporting that we need more regulations to protect against idiots like myself. Yes, we likely need more regulation, at least for safety critical applications (but I don't know if those are already in place).
- __MatrixMan__ 4y ago
  I'm reminded of the people putting open source firmware on insulin pumps. You have to either really trust yourself, or really distrust the system, to do something like that. I respect them.
  - cultofmetatron 4y ago
    not diabetic but if my life depended on firmware in a embedded device, you can best be sure I'd want the source code out there so that people smarter than I and not just people at the company could audit the shit out of that source code.
  - telcal 4y ago
    There's a huge community of people actively doing this. Type 1 diabetics were tired of waiting for a "closed loop" (aka artificial pancreas) insulin delivery system so they developed their own. One open source project is called Loop https://loopkit.github.io/loopdocs/ https://loopkit.github.io/loopdocs/ It's very mature and I know a few people who have been using it for years.
hef19898 4y ago
Last time something genetics based was developed fast, and succesful, quite a few people went on the fences over it: Covid mRNA vaccines. There are reasons why medical development takes time and money. And why rare diseases are underserved. And no amount of "disruption" is going to change the simple question of cost in that equation. So if VCs want to change that, they can simply use some of their "free" billions to fund proper development and research.
- robbintt 4y ago
  Orphan drug funds exist, I don't know how effective they are, and how it relates to prospective research.
_yb2s 4y ago
Are you sure it’s possible? There is a lot of hype around biotech and CRISPR, but we still can’t safely and reliably edit DNA in a living person, except in a few specific cases where the nature of the disease makes it especially easy.
deleted 4y ago
[deleted]
PragmaticPulp 4y ago
> I'm delighted to see that biohackers are stirring things up. Let's hope this inspires the industry to rethink their approach to drug development. I joined a biohacker Discord a while ago out of curiousity. One of the channels was dedicated to getting a Chinese company to synthesize a pipeline pharmaceutical that was being researched in mice by some company. The people in the channel didn't want to wait for the human trials to experiment on themselves. Long story short, they got a synthesis and paid thousands to confirm its purity. Several people took it and experienced some extremely concerning, potentially life threatening side effects. I noped out of the Discord because I didn't want to be associated with that group in any way after watching how they operated. Genetic engineering is a whole new level of potential problems.

Sporktacular 4y ago

I'd imagine they'll stir up the pharmaceuticals market as much as meth cooks did. If someone makes an actual advancement with these kits, watch him get bought out tout de suite.

ad404b8a372f2b9 4y ago

Big mood, I've been fantasizing about a building a wet lab at home for years. There are like 5 people actively doing research on my illness worldwide and the latest experimental treatment would be two grands a week at retail prices.

GTP 4y ago

I'm sorry for your child, but I'm not delighted. The guy that you can see in one of the pictures drinking from a glass recipient was in a Netflix documentary (I can't remember the title from top of my mind) where he was advocating for everyone being able to use genetic engineering for self-improvement, even without any previous knowledge of genetics. And this is what I take issue with. Sure genetic engineering has a lot of potential and could be used even to treat your child, but as every powerful tool, it has to be used by capable hands. Putting it freely in the hands of people that don't fully understand it (and I'm myself into that group) has the potential of creating great damages.

josalhor 4y ago
> The guy that you can see in one of the pictures drinking from a glass recipient was in a Netflix documentary (I can't remember the title from top of my mind) where he was advocating for everyone being able to use genetic engineering for self-improvement, even without any previous knowledge of genetics. You mean the documentary unnatural selection. I have seen it, but I recall something quite different. He did infact advocate that at some point people will use this technology without understanding it. It surely feels like a premature opinion, but in retrospect people use many life changing technologies without understanding them either Does everyone understand what they eat? how electricity works? how their smartphone works? the drugs their doctor prescribes?
- GTP 4y ago
  >Does everyone understand what they eat? how electricity works? how their smartphone works? the drugs their doctor prescribes? True, but you always have to balance them with the potential issues that could arise. I don't understand how drugs works, and that's why I need a doctor's prescription to take them. Many people don't know much about electricity, and that's why there are laws regulating how electric wirings have to be made and that say that only trained electricians can do wirings in homes. Many people don't understand how smartphones work, but what's the greatest damage that can result from this and how likely is it to happen?
  - josalhor 4y ago
    Absolutely agree. And while I don't recommend anyone to try this out on a DIY basis, historically a lot inventions we take for granted and have made our life better came from people literally tinkering around with stuff and slowly figuring out what works.
  - gptgpp 4y ago
    I mean... regulations are actually a lot more flexible than you're implying. I was looking to wire up some solar panels to a cottage in the countryside. Since municipal regulations didn't apply, provincial ones did, which were that if you've built the structure for your own occupancy and follow the electrical code, this is completely legal. So the code applies, but it's not restricted to trained electricians in some cases. Same goes for drugs in much of the world. Personally I think it's a little ridiculous people need to get a script for stuff like viagra or tretinoin or finasteride. It becomes almost farcical when online clinics exist which will do a consultation without obtaining medical records or even seeing you via video and write you a script. Or that celebrities can get private doctors who will write them whatever. Or when you consider most countries outside NA and the EU where you can get pretty much whatever you want OTC. Not to mention you can order TONS of different research chemicals and "nootropics", completely legally, online. If you were to pass a regulation that was essentially "only registered genetic engineers can experiment in any way with this" it would be way more restrictive than anything we have for pharmaceuticals, or even domestic electricity. What you're suggesting would be on par with regulations for nuclear technology. IDK seems maybe a bit excessive...
hansvm 4y ago
Starting from a baseline of people being able to make rational choices that further their own goals, who cares? Just don't go out of your way to make it seem safer than it is, and let people captain their lives through whatever risks they see fit.
gptgpp 4y ago
I'm inclined to agree with you; the thought of just "some dude" mucking about with the genetics of a virus is horrifying. And yet, computers are extremely powerful tools, arguably the most powerful we have created. And look what free access to them has accomplished... Sure, it has caused quite a bit of cyber crime, but it's all balanced out by a massive amount of open and freely exchanged innovation. Now imagine an alternate history where we somehow restricted access to programming to people with computer science degrees working under registered companies... I think that history would be pretty regressive. So I think your reaction is understandable, I share it, but also hold some significant doubts.
- imachine1980_ 4y ago
  You can't kill yourself writing c++ code, a buggy local server means your webpage is down, you aren't advocating for making your own insulin analyzer firmware, and using it for people whiout diabetes symptoms.
  - gptgpp 4y ago
    You can absolutely kill yourself writing C++ code... To my shame, I almost did when I was fucking around with a microcontroller hooked up to some fairly powerful motors. Not everyone uses code to make smartphone apps and video games, or computer applications. A vast amount is used to control everything from your car to your toaster :/ edit: Oh, I also botched the charging for some lithium ion cells and caused them to combust. Shit, now I feel like I'm refuting your point about death-by-C++, but also supporting that we need more regulations to protect against idiots like myself.
    - GTP 4y ago
      >A vast amount is used to control everything from your car to your toaster :/ True, and hopefully after the Therac-25 incident we learned that, while it is generally fine having people playing with programming, for certain applications it is best to leave it to professionals with a deep understanding of what they're doing. >Shit, now I feel like I'm refuting your point about death-by-C++, but also supporting that we need more regulations to protect against idiots like myself. Yes, we likely need more regulation, at least for safety critical applications (but I don't know if those are already in place).
__MatrixMan__ 4y ago
I'm reminded of the people putting open source firmware on insulin pumps. You have to either really trust yourself, or really distrust the system, to do something like that. I respect them.
- cultofmetatron 4y ago
  not diabetic but if my life depended on firmware in a embedded device, you can best be sure I'd want the source code out there so that people smarter than I and not just people at the company could audit the shit out of that source code.
- telcal 4y ago
  There's a huge community of people actively doing this. Type 1 diabetics were tired of waiting for a "closed loop" (aka artificial pancreas) insulin delivery system so they developed their own. One open source project is called Loop https://loopkit.github.io/loopdocs/ https://loopkit.github.io/loopdocs/ It's very mature and I know a few people who have been using it for years.

hef19898 4y ago

Last time something genetics based was developed fast, and succesful, quite a few people went on the fences over it: Covid mRNA vaccines. There are reasons why medical development takes time and money. And why rare diseases are underserved. And no amount of "disruption" is going to change the simple question of cost in that equation. So if VCs want to change that, they can simply use some of their "free" billions to fund proper development and research.

robbintt 4y ago
Orphan drug funds exist, I don't know how effective they are, and how it relates to prospective research.

_yb2s 4y ago

Are you sure it’s possible? There is a lot of hype around biotech and CRISPR, but we still can’t safely and reliably edit DNA in a living person, except in a few specific cases where the nature of the disease makes it especially easy.

deleted 4y ago

[deleted]

PragmaticPulp 4y ago

> I'm delighted to see that biohackers are stirring things up. Let's hope this inspires the industry to rethink their approach to drug development. I joined a biohacker Discord a while ago out of curiousity. One of the channels was dedicated to getting a Chinese company to synthesize a pipeline pharmaceutical that was being researched in mice by some company. The people in the channel didn't want to wait for the human trials to experiment on themselves. Long story short, they got a synthesis and paid thousands to confirm its purity. Several people took it and experienced some extremely concerning, potentially life threatening side effects. I noped out of the Discord because I didn't want to be associated with that group in any way after watching how they operated. Genetic engineering is a whole new level of potential problems.