Earlier quoted context omitted.
...which I hope you recognize is a very privileged position to be in.
Almost any reputable lawyer in the US will give you a few minutes of wisdom for free.
I was part of a human subject research study without my consent
331–340 of 382 posts
Re: I was part of a human subject research study without my consent
#332Earlier quoted context omitted.
Well for starters they are lying and misreprenting themselves and the basis for their query. They say they are a data subject from Nice and represent that they are going to make a request under the CCPA. In actual practise they are a researcher from Princeton. If you don't think that's an ethical problem then I don't see it's worth discussing further. When you say "If I as an ordinary citizen..." you essentially make…
Someone on the Internet is lying and misrepresenting themselves? Nooo! (The rest isn't a response to seanhunter's comment, but a comment on the discussion in general) If we take a step back from the discussion; I'd have to say that this is in a gray area that kind of ends up being mostly in the "ok" region - or possibly in the "probably not worth giving a shit about" region. There is a simple litmus test you can make…
Those large corporations we do not like have lawyers on retainer specifically to deal with this situation (probably by suing the pants off of whoever sent the email).
It is acceptable to react differently when the victim is defenseless. That is why we would have a different reaction to a large corporation being struck by this, versus an individual who may not be able to afford legal counsel (and who certainly can't afford to pay legal counsel when the threat turns out to be baseless).
Re: I was part of a human subject research study without my consent
#333Earlier quoted context omitted.
Almost any reputable lawyer in the US will give you a few minutes of wisdom for free.
Just knowing (or believing) that, and having ready access to "any reputable lawyer in the US", is already a privileged position to be in.
And to those unaware that this is a possibility, disseminating this knowledge is our collective responsibility. Be part of the solution.
Re: I was part of a human subject research study without my consent
#334Earlier quoted context omitted.
The irony of calling Scott Alexander "deeply ignorant" :) Human challenge trials. Hundreds of thousands of dead later, and we're still using statistics to answer questions like "is Omicron ignoring immunity", instead of answering them definitely in a few days with an absolute minimum of risk. I'd volunteer for that, btw, so would literally millions. But it's just not inside the Overton window. This isn't wisdom or ca…
The reason for this isn't "cowardice", though. I've read a lot of things by practicing people in the field on reasons for which they don't think human challenge trials produce reliable enough data . (Basically: You don't get a representative sample, and you get an unrepresentative sample in ways that are very likely to result in you getting bad data.) There's other reasons to distrust them, and I don't think your ass…
Re: I was part of a human subject research study without my consent
#335Earlier quoted context omitted.
Perhaps you're making an assumption that "normal citizens" receive legal threats regularly? I can count the legal threats I've received on one hand, and I can assure you the days following them were, unfortunately, quite unpleasant (fortunately nothing came of it). Stress aside, part of the problem is the very real possibility of a subject wasting money on hiring a lawyer.
To be clear, I find the ability for anybody to threaten anybody else with a lawyer to be problematic for many reasons. The legal system in the US sucks and I would love to see some sort of social remedy to this type of lopsided interaction and abuse of power. If that happened in this case that’s part of my question: perhaps there’s noting wrong with the “experiment” itself but rather with wording that might imply leg…
Sure, but if you haven't lawyered up by that point you're going to have a bad time. Doubly so if you aren't familiar with the amount of info-gathering and record-keeping involved in winning a suit--if you don't know what needs to be written down for when you do have to call a lawyer, waiting until the last second can easily shoot your entire case in the foot.
And if you do lawyer up, you're spending massive amounts of money--money that some people just don't have.
Re: I was part of a human subject research study without my consent
#336Earlier quoted context omitted.
This argument amounts to "If something can happen , then it's okay for a researcher to cause it to happen in order to study the result." I hope it's obvious why that is a poor ethical standard for what constitutes acceptable research practice.
If the way it was caused to happen was unethical then yes I see a problem. But it’s not, so no, it’s not clear to me, hence why I asked.
"Someone can be sued, therefore a researcher making vague legal threats to see if people waste money on lawyers is ethical."
"Someone can get syphilis and not receive treatment, therefore infecting people with syphilis and denying treatment is ethical."
(By the way, 2 out of the 3 are real studies. The middle one is this one. The third one is the Tuskegee Syphilis Study.)
Re: I was part of a human subject research study without my consent
#337Earlier quoted context omitted.
> 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…
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 simpl…
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.
Re: I was part of a human subject research study without my consent
#338Earlier quoted context omitted.
> Recommend you don’t spend “ thousands of dollars to hire a lawyer and file a response” on something that you find very slightly worrisome. I call a lawyer any time I have a legal question for which I am not confident about the answer. If it’s not a real problem, a lawyer will be able to answer it a fraction of an hour’s worth of billable time.
> a lawyer will be able to answer it a fraction of an hour Except that they will probably won't know the answer immediately an need more time than that: https://twitter.com/DanielleVEsq/status/1472105731474137094
Re: I was part of a human subject research study without my consent
#339The Institutional Review Board doesn't seem to be much of an "ethical board" given they don't consider the stress this causes the human side of the website operators. How did they conclude this doesn't count as "human subjects research" given the expectation is to measure a human response to an email (framed as from a person)?
> The Institutional Review Board doesn't seem to be much of an "ethical board" YES! I know you intended this as an insult, but it is actually one of the most insightful comments in the thread. An IRB is not supposed to be an ethical board. They have a much more limited scope of overseeing human subject research. > How did they conclude this doesn't count as "human subjects research" given the expectation is to measur…
We've had two different cases now where that disconnect has led to studies which cause stress and other harm to human subjects, because the study was classified as "not human subject research" despite directly involving humans at every step of the way. Perhaps that definition needs to be rewritten.
Re: I was part of a human subject research study without my consent
#340I'm so confused by the comments here. Californian consumers regularly, and rightly IMO, laud the CCPA. Then when on the receiving side, view it as a threat and freak out. Note: I'm ignoring the whole lying aspect for now, because it isn't pertinent to my argument. So it sounds like it's good for consumers, and a nightmare for producers. Seems the crux of the problem is the law itself.
I must've read the phrase "thinly veiled threat" at least a dozen time in this thread, yet honestly don't understand where the threat was. Maybe the last sentence where they put a deadline on it, but that part was strange anyways since they explicitly said this is NOT a CCPA request, so that deadline doesn't even apply to this email. The person seems to just be asking questions about the process and came off to me mo…
That's the threat, yeah. And yes, it's not technically correct--but, as many others have pointed out, you don't need to have a correct legal claim to inflict thousands of dollars of legal fees on a target. Hell, part of what those legal fees pay for is an expert to explain whether or not that deadline applies.
More than that, most people simply do not have the time to memorize laws, or to get the legal background required to understand whether a law applies. This is partly a problem with laws being complex and having their own jargon--but that doesn't excuse what's going on here.