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I guess it's the wording. "without my consent" is used to imply a strong violation of the personality rights, at least in some circles [0]. It's also pretty muc

I guess it's the wording. "without my consent" is used to imply a strong violation of the personality rights, at least in some circles [0]. It's also pretty much a repeat of yesterdays post. At least to me, this makes the issue feel a bit overblown. [0] The irony that the whole problem is based on wording that implies a lawsuit is not lost on me.

hellbannedguy 5y ago
When ever I read an email with Russia in it; I delete it.
ellen364 5y ago
Getting “informed consent” is one of the big, guiding principles for research done on humans. My guess is the author deliberately used that language of the scientific community, to make clear that they did not agree to be part of the research.
- dr_dshiv 5y ago
  Yeah, but the idea of “informed consent” is misunderstood broadly. There is no constitutional right to informed consent. Not all human subjects research requires informed consent — or even consent. There are other institutional ethical lapses that are much more dangerous — and there are also ethical attitudes that rest on the researcher, not the institution. Righteous indignation over something like this is dangerous, not least because it can lead to science being much harder (more bureaucratic and more expensive) to do by all scientists. “More oversight” or “dissolve the irb” all put too much responsibility on the institution. Sometimes, we should just blame the people who did something rude and stupid not the institution.
  - giantg2 5y ago
    It sounds like this type research - which could alter the subject's actions and cause harm (costs) - should have included consent.
    - dr_dshiv 5y ago
      And, the researchers shouldn’t have phrased things like an arse, just to increase their response rate!
  - dawnbreez 5y ago
    > Not all human subjects research requires informed consent — or even consent. There have been multiple examples of this going horribly, horribly wrong. (Naturally, the worst examples were government-funded and ran during the Cold War.) As a society, we have since concluded that at bare minimum, people should know they are being experimented on--and even that isn't enough to stop things from going badly. This is why the IRB exists in the first place. A major part of its purpose is to prevent this sort of thing from causing undue harm, i.e., by forcing people with limited incomes to seek legal counsel because they believe they're about to be sued into the ground. One of the rules generally agreed upon for this is that experiments with human test subjects must inform those humans up-front what they're getting into. To say that the response to this "can lead to science being much harder" is an ethically wrong defense. We know it makes certain kinds of research harder; that's the point. There are certain kinds of research that directly harm their subjects, and we don't do that to people. More than that, people have a right to decide whether they want to be involved in a study, as they may personally feel endangered by it (i.e., someone who has a PTSD response to being sued may not want to deal with being fake-sued). To say that calls to dissolve the IRB "put too much responsibility on the institution" is flat-out false. This IS the IRB's responsibility--they approve or reject studies like this specifically to avoid ethical problems like this one. To claim that this isn't the IRB's responsibility is like claiming that it's not the responsibility of the law to revoke a driver's license when someone has been driving drunk, or that it's not the responsibility of the Food and Drug Administration to reject approval for foods that contain dangerous contaminants.
    - dr_dshiv 5y ago
      I'd recommend reading up on why not all human subjects research requires informed consent. For instance, there are exceptions for human subjects research that takes place on normal educational practices. This carve out was made because of the difficulty of getting unanimous consent from all parents during normal classroom education. With greater oversight and full informed consent, a lot of educational research simply wouldn't happen. So, to reframe this: "can you think of scenarios where institutional oversight could cause negative harms on society?" There are tradeoffs in ethical domains —and usually a lot of work has been done to find a middle ground.

hellbannedguy 5y ago

When ever I read an email with Russia in it; I delete it.

ellen364 5y ago

Getting “informed consent” is one of the big, guiding principles for research done on humans. My guess is the author deliberately used that language of the scientific community, to make clear that they did not agree to be part of the research.

dr_dshiv 5y ago
Yeah, but the idea of “informed consent” is misunderstood broadly. There is no constitutional right to informed consent. Not all human subjects research requires informed consent — or even consent. There are other institutional ethical lapses that are much more dangerous — and there are also ethical attitudes that rest on the researcher, not the institution. Righteous indignation over something like this is dangerous, not least because it can lead to science being much harder (more bureaucratic and more expensive) to do by all scientists. “More oversight” or “dissolve the irb” all put too much responsibility on the institution. Sometimes, we should just blame the people who did something rude and stupid not the institution.
- giantg2 5y ago
  It sounds like this type research - which could alter the subject's actions and cause harm (costs) - should have included consent.
  - dr_dshiv 5y ago
    And, the researchers shouldn’t have phrased things like an arse, just to increase their response rate!
- dawnbreez 5y ago
  > Not all human subjects research requires informed consent — or even consent. There have been multiple examples of this going horribly, horribly wrong. (Naturally, the worst examples were government-funded and ran during the Cold War.) As a society, we have since concluded that at bare minimum, people should know they are being experimented on--and even that isn't enough to stop things from going badly. This is why the IRB exists in the first place. A major part of its purpose is to prevent this sort of thing from causing undue harm, i.e., by forcing people with limited incomes to seek legal counsel because they believe they're about to be sued into the ground. One of the rules generally agreed upon for this is that experiments with human test subjects must inform those humans up-front what they're getting into. To say that the response to this "can lead to science being much harder" is an ethically wrong defense. We know it makes certain kinds of research harder; that's the point. There are certain kinds of research that directly harm their subjects, and we don't do that to people. More than that, people have a right to decide whether they want to be involved in a study, as they may personally feel endangered by it (i.e., someone who has a PTSD response to being sued may not want to deal with being fake-sued). To say that calls to dissolve the IRB "put too much responsibility on the institution" is flat-out false. This IS the IRB's responsibility--they approve or reject studies like this specifically to avoid ethical problems like this one. To claim that this isn't the IRB's responsibility is like claiming that it's not the responsibility of the law to revoke a driver's license when someone has been driving drunk, or that it's not the responsibility of the Food and Drug Administration to reject approval for foods that contain dangerous contaminants.
  - dr_dshiv 5y ago
    I'd recommend reading up on why not all human subjects research requires informed consent. For instance, there are exceptions for human subjects research that takes place on normal educational practices. This carve out was made because of the difficulty of getting unanimous consent from all parents during normal classroom education. With greater oversight and full informed consent, a lot of educational research simply wouldn't happen. So, to reframe this: "can you think of scenarios where institutional oversight could cause negative harms on society?" There are tradeoffs in ethical domains —and usually a lot of work has been done to find a middle ground.