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> Not all human subjects research requires informed consent — or even consent. There have been multiple examples of this going horribly, horribly wrong. (Natur
by 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 agoI'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.
- dawnbreez 5y agoThe example you gave is not relevant. The researchers in this study are already directly contacting everyone they need consent from, and if an individual declines, the rest of the sample can still be studied (unlike in a classroom setting, where everyone's physically in the same room and it's impossible to study any of them in isolation). Further, the study would still have worked if the researchers had simply asked for the information as researchers, instead of lying about their identity and making thinly-veiled threats of legal action if the subject doesn't comply.
- chana_masala 5y agoHeh, you should check out who you're replying to. He runs some kind of educational research platform.
- dr_dshiv 5y agoI’m not defending their study and I feel like you are trying to argue “sides” rather than trying to understand my point about nuance.
- dawnbreez 5y agoI'm primarily concerned with the study, since A) that's the topic at hand, B) it involves technology and privacy, which I care about, and C) people keep comparing this to pentesting, just like last time, and I also care about security research. I apologize for assuming that you were defending the study; I figured that was the topic of conversation, after all. If there is nuance, but it does not apply to this situation, then it is worth saying that this nuance does not apply to this situation--so that I'm less likely to misinterpret what you're saying.
- Beldin 5y agoWait, your motivating example is keeping parents out of the loop... do you give this example to show that it usually goes really bad when informed consent is missing? Or do you mean to argue that it's okay to experiment on kids without consent, because the end justifies the means? Or a third option, that I'm overlooking currently?