Live data from Hacker News

I was part of a human subject research study without my consent

christine.website

171–180 of 382 posts

Re: I was part of a human subject research study without my consent

#171
post #169
post #153

Earlier quoted context omitted.

I had similar thoughts when I read this story: how messed up is the legal climate in the US if a person who knows for sure they did absolutely nothing wrong should be scared by obvious nonsense email instead of laughing it off and deleting it? I don't diminish the ethical breach the researchers committed - they clearly shouldn't be inflicting any amount of mental anguish on people that did not agree to be part of any…

It’s not obvious they did nothing wrong. The referenced statute creates an obligation to respond to inquiries and not everyone is comfortable making their own decision whether or not it applies to them.

It creates an obligation to businesses selling user data, or ones with revenues over 25 millions. It's not hard to find either: https://oag.ca.gov/privacy/ccpa

The CCPA applies to for-profit businesses that do business in California and meet any of the following:

Have a gross annual revenue of over $25 million; Buy, receive, or sell the personal information of 50,000 or more California residents, households, or devices; or Derive 50% or more of their annual revenue from selling California residents’ personal information.

It's not a very hard decision to make, the text is pretty clear. Especially if literally the fifth word of it - "for profit" - makes the further reading unnecessary.

Re: I was part of a human subject research study without my consent

#172

It looks like multiple people consulted lawyers because of the implied legal threat. OP isn't the only one who took this somewhat seriously. Attorney: "is this Princeton privacy study email that one of my clients received legitimate?" https://twitter.com/jdigiacomo/status/1470756584435249152 "Wow. I actually contacted my attorney over this email inquiry to see if I actually needed to respond and if so, how." https://…

One more attorney (I'm past the edit limit for the parent comment):

"I got this. It took time out of my day, but thankfully my French employer hired an American lawyer with CCPA experience (*cough* me) so it just ended up being a brief distraction."

https://twitter.com/jkosseff/status/1471816212732596227

He says he sent back a GDPR demand letter.

Re: I was part of a human subject research study without my consent

#173
post #66

A lot of people mocking the author or others for being scared and worried are basically blaming the victim here, and I would like them to stop. The nature of legal practices in the USA is such that the answers to "Are you totally in the clear legally?" and "Will you lose significant amounts of money proving in random courts that you are in the clear legally?" are often both yes. As a result, any researchers who send…

Yep I posted this hoping to raise awareness, but the reaction was not what I expected. In the US even a meritless legal threat will require hiring a lawyer to ensure you are in the clear which requires significant amount of money, in addition to the stress. Researchers should never be putting anyone in that position.

This is just FUD. I've yet to meet a lawyer who won't do a cursory evaluation of your case for free. It's in their interest to know if you're bringing them an easy win.

Re: I was part of a human subject research study without my consent

#174
post #77
post #61

Earlier quoted context omitted.

That’s not a threat. A threat would be, “I’ll sue you if you don’t comply with my request”.

You’ve clearly never dealt with lawyers very much. The implied threat is pretty obvious to those that have.

Lawyers don’t imply potential litigation, they are quite explicit.

Re: I was part of a human subject research study without my consent

#175
I have pretty mixed feelings on this. On the one hand, I agree that the researcher's actions (particularly the use of a false identity) were inappropriate. I am hesitant to engage in "victim blaming" by calling the targets of the email naive. But I hope this has been a learning experience for everyone, as it seems to have revealed a lot of knowledge gaps that were surprising to me.

I am not at all surprised that it was not subject to IRB review, but only because I've had a bit of involvement in the IRB process before and know that the specific legal mandates that drive IRBs (45 CFR 46) have a surprisingly narrow definition of human subject research that is driven primarily towards medical interventions, so generally speaking any research that consists of just asking questions and then anonymizing the results for reporting gets waved past IRBs (45 CFR 46.104). You might disagree with the situation (there's plenty of reasons to) but it's the law of the land. IRBs were developed pretty specifically in response to a spate of incidents in the mid-century, but especially the Tuskegee trials, involving non-consensual drug and toxin trials. The IRB process is directly designed to address these kinds of medical research, and so IRBs I've dealt with are not even very interested in looking at proposals coming from departments other than life sciences. The idea that IRBs are a general-purpose ethics review seems to be a pretty recent idea and it's not something the IRBs themselves are that into, at least from my experience hearing professors gripe about having to go through a stack of pre-reviews for information assurance studies on the off chance they qualify as human subject research.

On the other hand, though, I operate several websites for small organizations, admittedly in a politics and public policy-adjacent space, and receive emails of this type as a matter of course. I'd be surprised if there are many people operating websites that get a meaningful amount of traffic that don't get an email of this type from time to time. It's sort of background noise if you're doing anything that's of much public interest. In some of these situations I benefit from having retained legal counsel that probably wouldn't even bother to bill for this kind of thing, but it would still be a rare situation that I referred such an email to counsel unless it was something about a more obscure corner of city political financing regulations, which I have gotten once before.

The "legal threat" here honestly doesn't read to me as much of a threat. Part of this is because in my hobby work I write emails very much like this one on a weekly basis... mostly citing FOIA or similar state sunshine/open records/open meetings laws. Many guides on transparency laws coming from this same community clearly advocate a similar sentence citing the response deadline, and I wouldn't be surprised if this researcher copied and pasted that from such a "consumer rights" guide. It's considered a best practice to state the deadline and citation with this kind of request. There are basically two reasons for this: first, some people, especially smaller organizations, may be totally unaware of the deadline and you will be telling them about it for the first time. They may not believe you on it if you don't provide some sort of backing. The second is that there's a perception (from my experience I'm skeptical this is frequently true but I'm sure it is occasionally) that especially federal offices may be aware of the deadline but feel comfortable ignoring it if they don't think the requester knows. So providing the deadline and citation is sort of a "savvy customer" indication that encourages them to at least issue an extension letter on time (even then it's very common, even before COVID but especially now, for federal agencies to run past the deadline without any response. Oddly, state and local agencies are usually much better about this).

Another part of why I have a hard time taking it as a threat is because it is the first in a rather long chain of actions that would lead to legal action. It does indicate that the requester is aware of the law but it's quite a few steps from the requester's intent to file a lawsuit. Most people that include a line like that never even bother to follow up with a nag when the deadline passes. What was in the email is basically a "I copied and pasted this from an online howto" level of effort, and there's a pretty big ramp from there to filing a lawsuit (especially from a far away place). Really, in my experience, people who are a serious legal risk (i.e. lawyers and people who use them) cite statute less often than slightly crazy internet randoms do.

So I suppose what I mean to say, is that I feel bad for the people who were alarmed by this, but I hope it has been a learning experience: when you operate a website, you are putting yourself out in public and exposing yourself to both legal obligations and dealing with random people that have weird ideas about your legal obligations (there tend to be more of the latter than the former). There are a lot of risks and responsibilities entailed in running a website, most of them fairly minor, and this kind of thing is one of them... just something you have to deal with when you make the decision to be a public entity.

Or maybe a better takeaway is this: if you get at all involved in politics, government, civil rights, or the public sector in general you will get a lot of stuff like this (and some of it will actually require action, but usually not especially difficult action). One result of increasing online privacy concerns is that just operating a website is starting to enter the civil rights realm, so I suppose over time every website will get more of this.

Re: I was part of a human subject research study without my consent

#176
post #144

Earlier quoted context omitted.

> How is asking someone questions a legal threat? It isn't. Being paranoid about lawsuits against some personal blog shows a lack of legal sophistication and this type of sensationalism promotes an irrational fear of being somehow financially vulnerable to almost any legal predation. That's simply not how the US system works. There have to be actual damages for a court case to go forward to the worst-case expensive e…

> Being paranoid about lawsuits against some personal blog shows a lack of legal sophistication and this type of sensationalism promotes an irrational fear of being somehow financially vulnerable to almost any legal predation. And yet, many people reacted just like this writer. Perhaps, given that the reaction was widespread, it could and should have been anticipated, instead of expecting every person to have your ev…

And above somebody posted a link to 3 different counsel who took the message seriously (one an inside counsel who did not feel confident about their read and referred it to outside counsel).

Re: I was part of a human subject research study without my consent

#177
post #64

Earlier quoted context omitted.

Interesting. Do you or any of your associates send these sorts of notices to anyone?

EDIT: Some grammar, and minor clause clarification in second-to-last paragraph. Yes, frequently. And throwaway. About once a week, I pick an account in my LastPass collection, and initiate the following process: 1. Initiate a CCPA data request using a form or email, and I always include language about the timeline. I am not a lawyer, I'm just a person. 2. Then, once I have the data, I delete the account. I'm trying t…

Even if what you are doing is "legal" it seems abusive as hell to me, especially if it is ever targeted at a smaller company or person like in the OP's case. Why are being so difficult? Why don't you find something more useful to do with your time instead of making others jump through idiotic hoops out of some misplaced sense of justice?

Re: I was part of a human subject research study without my consent

#178

Earlier quoted context omitted.

Key word is "probably"! We just don't have enough information to make any judgments about her. For example from your two comments I could say you are a judgmental individual. However, I think that would be both rude and inaccurate! One article or two comments is just too small of a sample size to get any meaningful insight on someones character!

I wonder how you would feel about the deductions and inferences made in a sherlock holmes story:)

Well, Sherlock Holmes isn't real life and anyone who tries to act like a real life Holmes generally comes across as an arrogant fool.

Re: I was part of a human subject research study without my consent

#179
I'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.

Re: I was part of a human subject research study without my consent

#180

A lot of people mocking the author or others for being scared and worried are basically blaming the victim here, and I would like them to stop. The nature of legal practices in the USA is such that the answers to "Are you totally in the clear legally?" and "Will you lose significant amounts of money proving in random courts that you are in the clear legally?" are often both yes. As a result, any researchers who send…

What specifically is there to fear from an email like this? For one the sender opens by admitting they are not protected by the CCPA, and a quick reading about this law shows it does not apply to an individual's personal blog. If a Russian were able to file suit in California, wouldn't the defendant have a chance early on to ask a judge to dismiss it? I'm trying to sound naive because I want some gory details.

As I understand it, it is pretty easy to make small formal mistake that will make you loose without ever being heard.
Post reply on HN