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The story about the insulin pump seems rather unethical, almost as if she is performing research on a human child when they are not of the age to consent, and w

The story about the insulin pump seems rather unethical, almost as if she is performing research on a human child when they are not of the age to consent, and would be biased toward consent due to parental influence.

manmal 7y ago
It's not that easy. Bad compliance will lead to an early death in diabetics. And kids are VERY bad at compliance. Most parents who can afford it nowadays get an insulin pump for their kids. And they are so ridiculously complicated to operate, and one single lapse can be dangerous. You're always doing math in the back your head, considering what you've eaten (or will eat), whether you will do sports, etc.. A custom firmware with auto-dosing can be a real life changer, and saver. Source: A friend of mine is part of a insulin pump hacking community
- the_seraphim 7y ago
  could connect a sensor to some kind of excreta to get a blood sugar level? maybe an implantable sensor with blood flow?
  - manmal 7y ago
    Yes that's what those systems do.
- galangalalgol 7y ago
  a friend with type 1 told me about a mesh ball containing pancreatic tissue that has pores big enough for insulin but too small for the immune response to get to I am destroy it. sounded fascinating. I've been wondering if a closed loop thyroid pump that dumps t4 and t3 based on tsh and reverse t3 levels could be made, or a mesh ball to keep hashimotos away from some thyroid tissue, then ablate the original.
- alexk7 7y ago
  Thank you for that comment. Don't get me started on "compliance". Even if you are following 100% the diet and rules (which is impossible, we are humans), type 1 diabetes is HARD. We need all the help we can get! A closed-loop system improved my quality of life a lot. I would be healthier now if this stuff was available when I was a kid.
- arafa 7y ago
  Can't agree more. People always bring up how risky and unethical the insulin pump hacking stuff is in literally every link it's mentioned. I guess intuitively, all things being equal, people feel like like you should be as cautious as possible and test these like any other medical device. But all things aren't equal. Most of the people doing the hacking (I know a few as well) are already intimately familiar with the biology and consequences, and are already constantly monitoring themselves, or their children and loved ones. They're the best people to test this stuff. And, like you said, there are compliance issues with children and all sorts of bad things happening already, like devastating lows, diabetic comas, chronic sleep deprivation, etc. The closed-loop and automated systems already reduce these things and improve quality of life for all parties involved. Also the companies are taking forever and may have a vested interest in maintaining their products the way they currently are. If all things were equal, I could understand the disdain and caution for the device hacking. But they're not.
sidlls 7y ago
Nevermind age, the child also has autism. They may not be able to consent in any circumstance. I have a child with autism. He's a so-called "high functioning" autistic individual (goes to public school, has social interaction with peers outside of school, etc.). He's showing signs of above average intelligence and talent in some things and it would be easy for someone to think he understands "consent" at this level. Sure, parents are able to give consent for their kids due to their minority age, but there are limits to that power. This blog post was unsettling, and not in a "oh you're just afraid of hackers doing what they do" sort of way.
- papln 7y ago
  Your claim that an autistic could like you describe is less capable of consent than an average child is illectually suspect and dehumanized. It's also an argument that pushes kids into abusive ABA therapies against their will, since their expressed preferences are considered invalid.
- kragen 7y ago
  I think it's really allistic people who are less capable of consent. They have a strong tendency to choose their beliefs and actions based on herd instincts rather than rational evidence, while autistic people, despite our numerous problems, have a much easier time considering evidence rationally. It was just yesterday that an (adult!) allistic friend of mine was posting on Facebook looking for advice on treating her kidney infection without antibiotics. Her irrational allistic friends were giving her all kinds of ridiculously terrible medical advice (“Alka-Seltzer cleared up my UTI”), and I looked up the clinical practice guidelines and yelled at her to GET ANTIBIOTICS.

manmal 7y ago

It's not that easy. Bad compliance will lead to an early death in diabetics. And kids are VERY bad at compliance. Most parents who can afford it nowadays get an insulin pump for their kids. And they are so ridiculously complicated to operate, and one single lapse can be dangerous. You're always doing math in the back your head, considering what you've eaten (or will eat), whether you will do sports, etc.. A custom firmware with auto-dosing can be a real life changer, and saver. Source: A friend of mine is part of a insulin pump hacking community

the_seraphim 7y ago
could connect a sensor to some kind of excreta to get a blood sugar level? maybe an implantable sensor with blood flow?
- manmal 7y ago
  Yes that's what those systems do.
galangalalgol 7y ago
a friend with type 1 told me about a mesh ball containing pancreatic tissue that has pores big enough for insulin but too small for the immune response to get to I am destroy it. sounded fascinating. I've been wondering if a closed loop thyroid pump that dumps t4 and t3 based on tsh and reverse t3 levels could be made, or a mesh ball to keep hashimotos away from some thyroid tissue, then ablate the original.
alexk7 7y ago
Thank you for that comment. Don't get me started on "compliance". Even if you are following 100% the diet and rules (which is impossible, we are humans), type 1 diabetes is HARD. We need all the help we can get! A closed-loop system improved my quality of life a lot. I would be healthier now if this stuff was available when I was a kid.
arafa 7y ago
Can't agree more. People always bring up how risky and unethical the insulin pump hacking stuff is in literally every link it's mentioned. I guess intuitively, all things being equal, people feel like like you should be as cautious as possible and test these like any other medical device. But all things aren't equal. Most of the people doing the hacking (I know a few as well) are already intimately familiar with the biology and consequences, and are already constantly monitoring themselves, or their children and loved ones. They're the best people to test this stuff. And, like you said, there are compliance issues with children and all sorts of bad things happening already, like devastating lows, diabetic comas, chronic sleep deprivation, etc. The closed-loop and automated systems already reduce these things and improve quality of life for all parties involved. Also the companies are taking forever and may have a vested interest in maintaining their products the way they currently are. If all things were equal, I could understand the disdain and caution for the device hacking. But they're not.

sidlls 7y ago

Nevermind age, the child also has autism. They may not be able to consent in any circumstance. I have a child with autism. He's a so-called "high functioning" autistic individual (goes to public school, has social interaction with peers outside of school, etc.). He's showing signs of above average intelligence and talent in some things and it would be easy for someone to think he understands "consent" at this level. Sure, parents are able to give consent for their kids due to their minority age, but there are limits to that power. This blog post was unsettling, and not in a "oh you're just afraid of hackers doing what they do" sort of way.

papln 7y ago
Your claim that an autistic could like you describe is less capable of consent than an average child is illectually suspect and dehumanized. It's also an argument that pushes kids into abusive ABA therapies against their will, since their expressed preferences are considered invalid.
kragen 7y ago
I think it's really allistic people who are less capable of consent. They have a strong tendency to choose their beliefs and actions based on herd instincts rather than rational evidence, while autistic people, despite our numerous problems, have a much easier time considering evidence rationally. It was just yesterday that an (adult!) allistic friend of mine was posting on Facebook looking for advice on treating her kidney infection without antibiotics. Her irrational allistic friends were giving her all kinds of ridiculously terrible medical advice (“Alka-Seltzer cleared up my UTI”), and I looked up the clinical practice guidelines and yelled at her to GET ANTIBIOTICS.