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Are there any mechanisms in the law for somebody who is soon to be dying of some illness to volunteer as a medical research subject, possibly with their familie

Are there any mechanisms in the law for somebody who is soon to be dying of some illness to volunteer as a medical research subject, possibly with their families getting heavily compensated in some way? I'm extremely skeptical of Musk's efforts working perfectly here, but I think that the concept of self-ownership of your body is important. It might be a dying person's greatest wish to have a legacy of directly contributing to the future in some way, so I could see some people wanting to try if there was a mechanism for it.

whythre 4y ago
“Are there any mechanisms in the law for somebody who is soon to be dying of some illness to volunteer as a medical research subject, possibly with their families getting heavily compensated in some way?” That last bit sounds like a powerful and perverse incentive for abuse.
- logicalmonster 4y ago
  1) I understand fearing this incentive and it's important to think about its implications. But the reality is that a dying person's family currently gets $0 and the surviving dependents can often be screwed over by funeral expenses and the reality of living without a breadwinner. Whatever the compensation is, wouldn't it be a better outcome for their family than $0? 2) Who owns a body and ought to have the agency to decide what happens to it? Does the State own you or does an Individual own himself?
  - kevviiinn 4y ago
    Why would you allow a mechanism where a family in a desperate financial situation due to the structure and function of capitalism can sell their dying loved ones to a wealthy capital owner for experimentation That's absolutely bonkers
    - startupsfail 4y ago
      How about the case when an individual wants to do it without any compensation? And is it the same organization that is regulating this that once was considering that for U.S. government doctors it was fine to experiment on disabled people and prison inmates?
      - kevviiinn 4y ago
        Just because people did something shitty once is not a good reason to do more shitty things A system of donating one's body after death is not as ripe for exploitation when compensation isn't involved
    - logicalmonster 4y ago
      Why would you allow a mechanism where the State dictates ownership over your body? I can understand feeling a bit uncomfortable at this whole thing. It's a bad situation all-around to think of somebody dying younger than they should and even leaving a family behind. But if you're going to die no matter what and want the best thing for your surviving family, which of these things would you rather leave them? > $0 and a pile of funeral expenses and little hope for the future > Many dollars, more options in life, and having the family have the knowledge that their parent gave everything they had to care for them If I was faced with that choice in a situation of poverty, I'd rather at least have this as a choice. Why is it better for a desperate family who just lost the family breadwinner to have $0 rather than many dollars?
      - deleted 4y ago
        [deleted]
      - kevviiinn 4y ago
        It is important to acknowledge that allowing the State or any other entity to dictate ownership over a person's body is a violation of fundamental human rights. Every individual has the right to autonomy and dignity, which includes the right to make decisions about their own body and what happens to it after death. The idea of selling one's body for experimentation or any other purpose goes against these principles and raises concerns about exploitation and commodification of human life. While poverty and lack of financial resources can certainly create difficult situations for families, it is not ethical to suggest that selling a loved one's body for experimentation is a valid solution. Such a practice would further perpetuate systemic inequalities and injustice by exploiting those who are already vulnerable. There are alternative solutions to addressing poverty and supporting families in difficult situations, such as providing social welfare programs and assistance, education, and job opportunities. It is important to approach these issues with compassion and respect for human dignity, rather than resorting to exploitative practices that violate basic human rights.
  - jon-wood 4y ago
    I can't help thinking there are probably better solutions to people being left destitute by funeral expenses and the loss of the breadwinner in the family than providing the option of selling your dying self for scientific experimentation.
    - kevviiinn 4y ago
      Ahh but is that the logical answer? Surely logic can tell us that it is okay to sell your family members for cash, they're dying after all
- pgayed 4y ago
  > That last bit sounds like a powerful and perverse incentive for abuse. Okay, but would you oppose the legality of such an arrangement? In any case, not sure why the family, instead of individual directly, is compensated.
  - logicalmonster 4y ago
    Well, the money goes to the individual. But it seems like a fairly safe assumption that a person who is dying and goes through this effort is somewhat motivated to make sure their family is provided for.
  - bastawhiz 4y ago
    > would you oppose such arrangements as legal How can you prevent people from harming themselves to qualify for compensation? It's not about the rights of the individuals, it's about stopping companies from doing things that will kill people. If I said I'll pay $1,000,000 to anyone who drinks a shot of bleach, certainly it's well within anyone's rights to drink bleach. But it's reckless (and arguably should be illegal) for me to encourage folks to do something which is almost certainly going to kill or maim them. If I say that I'll compensate terminally ill people to get an experimental brain implant that has a high likelihood of failure, I'm literally encouraging folks to find a way to qualify as terminally ill.
    - pgayed 4y ago
      > almost certainly going to kill or maim them You are strawmanning by providing worst-case scenarios. Is it reckless and arguably illegal to offer jobs on an oil rig? As an x-ray technician? A vascular surgeon? When does risk become so great that consent is unlawful? When is compensation so large it’s compulsion?
      - feoren 4y ago
        > Is it reckless and arguably illegal to offer jobs on an oil rig? As an x-ray technician? A vascular surgeon? The safety of those jobs is regulated and overseen by OSHA, and OSHA can force changes or shut down operations if they are unsafe. Which is exactly what the FDA is doing here, for the same reason. GP's comment was basically "yeah but what if the life-threatening job only used terminally ill people and paid them a whole bunch of money?" It's unconvincing that that should be an exception. > When does risk become so great that consent is unlawful? When a regulatory agency, following due process according to its mandate, says so. Like in this case.
JohnFen 4y ago
Such mechanisms exist, but any human experimentation (in the US) is subject to very heavy rules and regulations regardless of whether the person is close to death or not. The people volunteering for it won't get heavily compensated. It's just not financially feasible.
bastawhiz 4y ago
There's a big difference between "does this thing work" and "does this thing kill you". Trials for the former are moot at this point, because it doesn't matter if it works if it turns you into a vegetable. Making a safe device and a safe way to implant it is really the only concern at this point, because you can always change how the device works later if it doesn't do the thing but also doesn't hurt you. Trials for the second are still important to be done safely. Plenty of people diagnosed as terminally ill are misdiagnosed. Just this week, the story about plutonium told of the Manhattan project injecting terminally ill folks with plutonium to see what it did. One of them turned out not to be terminally ill. A procedure like this also feels mutually exclusive with any sort of real palliative care, which feels like a really terrible thing to do to someone who is dying. You don't have a lot of terminally ill folks up and walking around, living a normal life. It's not just about not killing someone, either. Brain implants can cause horrifying effects: intense pain, confusion, hallucinations, memory issues, and more. None of these folks will have any tangible benefit from being implanted with these test devices (the killer app, no pun intended, seems to be "hands free pong"). And yet, there's a risk that the last remaining days (or not!) are filled with irrecoverable torment, and that starts to bring up questions of euthanasia. How many people are you willing to have to put into a chemically induced coma and euthanize because you didn't do enough animal testing first, even if those folks were maybe going to die anyway?
gamblor956 4y ago
There are already mechanisms for donating one's body to science for research; it happens all the time. There are also mechanisms for people to volunteer for approved medical research studies, in exchange for some compensation. This also happens all the time, and is part of the approval process for new medications and procedures. The caveat being that the medical research must be approved by the FDA or the EU's corresponding regulatory body, and it is extremely unlikely that a Musk company would ever receive approval for trials involving human subjects given their wanton disregard of the much easier and laxer rules involving animal subjects.
HeyLaughingBoy 4y ago
I believe that the "mechanisms" exist in that you can volunteer if you want. However, the people on the other end -- the ones conducting the research -- can't an test an unregulated device on you (I'm coming at this from the Medical Device aspect, since that's what I'm familiar with), without following certain procedures to ensure that it's safe and efficacious. As a result, it really doesn't matter whether or not you're dying.
toss1 4y ago
There already is such a mechanism. They can go to some unregulated country and do it. This may not be the free pass it sounds like, and does come with problems, such as poor access to broader medical services, as well as generally guaranteeing that all US, EU, G7/G20 country regulators will permanently give you a hard time when you want approval for general sales. The question is whether he wants to sell it, or if he's just developing it for a hobby. Wouldn't be surprising to see him get some kind of test approval to go ahead in China or India...

whythre 4y ago

“Are there any mechanisms in the law for somebody who is soon to be dying of some illness to volunteer as a medical research subject, possibly with their families getting heavily compensated in some way?” That last bit sounds like a powerful and perverse incentive for abuse.

logicalmonster 4y ago
1) I understand fearing this incentive and it's important to think about its implications. But the reality is that a dying person's family currently gets $0 and the surviving dependents can often be screwed over by funeral expenses and the reality of living without a breadwinner. Whatever the compensation is, wouldn't it be a better outcome for their family than $0? 2) Who owns a body and ought to have the agency to decide what happens to it? Does the State own you or does an Individual own himself?
- kevviiinn 4y ago
  Why would you allow a mechanism where a family in a desperate financial situation due to the structure and function of capitalism can sell their dying loved ones to a wealthy capital owner for experimentation That's absolutely bonkers
  - startupsfail 4y ago
    How about the case when an individual wants to do it without any compensation? And is it the same organization that is regulating this that once was considering that for U.S. government doctors it was fine to experiment on disabled people and prison inmates?
    - kevviiinn 4y ago
      Just because people did something shitty once is not a good reason to do more shitty things A system of donating one's body after death is not as ripe for exploitation when compensation isn't involved
  - logicalmonster 4y ago
    Why would you allow a mechanism where the State dictates ownership over your body? I can understand feeling a bit uncomfortable at this whole thing. It's a bad situation all-around to think of somebody dying younger than they should and even leaving a family behind. But if you're going to die no matter what and want the best thing for your surviving family, which of these things would you rather leave them? > $0 and a pile of funeral expenses and little hope for the future > Many dollars, more options in life, and having the family have the knowledge that their parent gave everything they had to care for them If I was faced with that choice in a situation of poverty, I'd rather at least have this as a choice. Why is it better for a desperate family who just lost the family breadwinner to have $0 rather than many dollars?
    - deleted 4y ago
      [deleted]
    - kevviiinn 4y ago
      It is important to acknowledge that allowing the State or any other entity to dictate ownership over a person's body is a violation of fundamental human rights. Every individual has the right to autonomy and dignity, which includes the right to make decisions about their own body and what happens to it after death. The idea of selling one's body for experimentation or any other purpose goes against these principles and raises concerns about exploitation and commodification of human life. While poverty and lack of financial resources can certainly create difficult situations for families, it is not ethical to suggest that selling a loved one's body for experimentation is a valid solution. Such a practice would further perpetuate systemic inequalities and injustice by exploiting those who are already vulnerable. There are alternative solutions to addressing poverty and supporting families in difficult situations, such as providing social welfare programs and assistance, education, and job opportunities. It is important to approach these issues with compassion and respect for human dignity, rather than resorting to exploitative practices that violate basic human rights.
- jon-wood 4y ago
  I can't help thinking there are probably better solutions to people being left destitute by funeral expenses and the loss of the breadwinner in the family than providing the option of selling your dying self for scientific experimentation.
  - kevviiinn 4y ago
    Ahh but is that the logical answer? Surely logic can tell us that it is okay to sell your family members for cash, they're dying after all
pgayed 4y ago
> That last bit sounds like a powerful and perverse incentive for abuse. Okay, but would you oppose the legality of such an arrangement? In any case, not sure why the family, instead of individual directly, is compensated.
- logicalmonster 4y ago
  Well, the money goes to the individual. But it seems like a fairly safe assumption that a person who is dying and goes through this effort is somewhat motivated to make sure their family is provided for.
- bastawhiz 4y ago
  > would you oppose such arrangements as legal How can you prevent people from harming themselves to qualify for compensation? It's not about the rights of the individuals, it's about stopping companies from doing things that will kill people. If I said I'll pay $1,000,000 to anyone who drinks a shot of bleach, certainly it's well within anyone's rights to drink bleach. But it's reckless (and arguably should be illegal) for me to encourage folks to do something which is almost certainly going to kill or maim them. If I say that I'll compensate terminally ill people to get an experimental brain implant that has a high likelihood of failure, I'm literally encouraging folks to find a way to qualify as terminally ill.
  - pgayed 4y ago
    > almost certainly going to kill or maim them You are strawmanning by providing worst-case scenarios. Is it reckless and arguably illegal to offer jobs on an oil rig? As an x-ray technician? A vascular surgeon? When does risk become so great that consent is unlawful? When is compensation so large it’s compulsion?
    - feoren 4y ago
      > Is it reckless and arguably illegal to offer jobs on an oil rig? As an x-ray technician? A vascular surgeon? The safety of those jobs is regulated and overseen by OSHA, and OSHA can force changes or shut down operations if they are unsafe. Which is exactly what the FDA is doing here, for the same reason. GP's comment was basically "yeah but what if the life-threatening job only used terminally ill people and paid them a whole bunch of money?" It's unconvincing that that should be an exception. > When does risk become so great that consent is unlawful? When a regulatory agency, following due process according to its mandate, says so. Like in this case.

JohnFen 4y ago

Such mechanisms exist, but any human experimentation (in the US) is subject to very heavy rules and regulations regardless of whether the person is close to death or not. The people volunteering for it won't get heavily compensated. It's just not financially feasible.

bastawhiz 4y ago

There's a big difference between "does this thing work" and "does this thing kill you". Trials for the former are moot at this point, because it doesn't matter if it works if it turns you into a vegetable. Making a safe device and a safe way to implant it is really the only concern at this point, because you can always change how the device works later if it doesn't do the thing but also doesn't hurt you. Trials for the second are still important to be done safely. Plenty of people diagnosed as terminally ill are misdiagnosed. Just this week, the story about plutonium told of the Manhattan project injecting terminally ill folks with plutonium to see what it did. One of them turned out not to be terminally ill. A procedure like this also feels mutually exclusive with any sort of real palliative care, which feels like a really terrible thing to do to someone who is dying. You don't have a lot of terminally ill folks up and walking around, living a normal life. It's not just about not killing someone, either. Brain implants can cause horrifying effects: intense pain, confusion, hallucinations, memory issues, and more. None of these folks will have any tangible benefit from being implanted with these test devices (the killer app, no pun intended, seems to be "hands free pong"). And yet, there's a risk that the last remaining days (or not!) are filled with irrecoverable torment, and that starts to bring up questions of euthanasia. How many people are you willing to have to put into a chemically induced coma and euthanize because you didn't do enough animal testing first, even if those folks were maybe going to die anyway?

gamblor956 4y ago

There are already mechanisms for donating one's body to science for research; it happens all the time. There are also mechanisms for people to volunteer for approved medical research studies, in exchange for some compensation. This also happens all the time, and is part of the approval process for new medications and procedures. The caveat being that the medical research must be approved by the FDA or the EU's corresponding regulatory body, and it is extremely unlikely that a Musk company would ever receive approval for trials involving human subjects given their wanton disregard of the much easier and laxer rules involving animal subjects.

HeyLaughingBoy 4y ago

I believe that the "mechanisms" exist in that you can volunteer if you want. However, the people on the other end -- the ones conducting the research -- can't an test an unregulated device on you (I'm coming at this from the Medical Device aspect, since that's what I'm familiar with), without following certain procedures to ensure that it's safe and efficacious. As a result, it really doesn't matter whether or not you're dying.

toss1 4y ago

There already is such a mechanism. They can go to some unregulated country and do it. This may not be the free pass it sounds like, and does come with problems, such as poor access to broader medical services, as well as generally guaranteeing that all US, EU, G7/G20 country regulators will permanently give you a hard time when you want approval for general sales. The question is whether he wants to sell it, or if he's just developing it for a hobby. Wouldn't be surprising to see him get some kind of test approval to go ahead in China or India...