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

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

#91

Post by shadowgovt »

mjfl wrote: post #21

This is going to be disagreeable, but as someone who was blocked from starting a COVID surveillance program at my uni due to the IRB constraints on "human subjects" - would need to buy special, expensive software in order to prevent test results from being 'deanonymized' - I think this space is too regulated already. In some cases, people with apparently legitimate ethical issues should have been told to shove it, in…

> Innovation is being destroyed to protect people's feelings.

Yes, it is.

This is not a bad thing.

A lot of the calculuses that conclude it's a bad thing are fundamentally dehumanizing.

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

#92

Post by dqv »

charcircuit wrote: post #73
quadrifoliate wrote: post #48

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…

>thinly veiled legal threats How is asking someone questions a legal threat?

They weren't just asking questions.

From the email:

>My questions are about your process for when I do submit a request.

It's really easy to read this as "I am going to be submitting a request."

>I look forward to your reply without undue delay and at most within 45 days of this email, as required by Section 1798.130 of the California Civil Code.

So I'd say there is some legal threat here.

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

#94

Post by throawayblahads »

progman32 wrote: post #89
charcircuit wrote: post #76

Earlier quoted context omitted.

Yes, I have had friends jokingly say they would request the information I have on them because of GDPR.

Responding to throwaway, I think the critical difference here is that you're making the requests in good faith. The researcher was making these (could be interpreted as vague) requests deceptively.

Yeah, I think that's right. But it does raise an interesting point. The meta-point of the study was a good one, I think, which is to "study privacy on the internet".

I'm soooo behind that (one reason I am disappointed in the ethical lapses here)—I've often considered publishing the steps I take for each website on a substack or whatever, to help other people. Sometimes, it can be hard to figure out (1) if your data can be requested-to-be-deleted, and (2) how to even do it.

Clearly, the deception was bad; I guess, just thinking out loud, how could this study have been done ethically? Perhaps, sign up real people to request the data, and transparently include a notice that this was part of a study?

The last bit is the tricky one; including that might skew the results in favor of websites being compliant.

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

#96

Post by pdonis »

dcow wrote: post #58
progman32 wrote: post #33

Earlier 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…

> I’m dubious that there was even a threat of a lawyer.

The usual legal standard is whether a reasonable person could interpret the email as potentially threatening legal action.

> The request simply asked for a prompt response as required by law.

And such a request reads exactly like something written by a lawyer. Lawyers don't usually explicitly threaten a lawsuit in their first communication. They write something very similar to the email the researchers sent. I can easily see how a reasonable person could interpret those emails as potentially threatening a lawsuit if the request were not complied with, or if the sender did not think the response was sufficient.

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

#97

Post by lazide »

charcircuit wrote: post #73
quadrifoliate wrote: post #48

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…

>thinly veiled legal threats How is asking someone questions a legal threat?

The last paragraph where it referenced a specific legal code is where it is a threat. Asking someone questions to see if they will incriminate themselves is an easy low cost legal trick that works surprisingly well.

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

#98

Post by Godel_unicode »

MR4D wrote: post #77
dcow wrote: 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.

No post body was provided.

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

#99

Post by TedDoesntTalk »

ethbr0 wrote: post #39
omgitsabird wrote: post #2

"In order to be considered a covered business, the organization needs to have annual gross revenues in excess of twenty-five million, possess the personal information of 50,000 consumers, or derive 50 percent or more of its annual revenue from selling consumers' personal information."

> or derive 50 percent or more of its annual revenue from selling consumers' personal information Wouldn't that cover most blogs that run ads?

Most blogs don’t have consumers’ personal information, do they? How many blogs have you registered with? I can’t remember the last time I did that. If I read a blog, the most they can do is cookie reading/writing, which is not PII.
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