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

christine.website

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

#141

Earlier quoted context omitted.

This is, of course, not true. Please stop.

My job involves DMCA pass through compliance and I have several hundred of such threats from a myriad of sources sitting in an inbox right now which say otherwise. Perhaps you've never had thousands of people torrenting movies using you as a service provider before.

I would hope someone in that position would understand the difference between a strongly worded email and a "actual legal threat".

Serious lawyers don't use email.

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

#142
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…

The distinction is super clear to me. You as an individual are exercising genuine data subject access rights granted to you by law. They are a researcher prentending to be a data subject exercising rights in order to gather data for their study.

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

#143
post #111

Earlier quoted context omitted.

Quoted post unavailable.

I’ve been on the internet since before Al Gore invented it. I’ve seen more crappy stuff from lawyers all the time. Remember, in the US, you do not need a reason to sue someone. A friend just got sued by a guy who tried to by his house for some BS reason. Trust me, stupid stuff happens.

Bet he heard about that by some method other than email ;)

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

#144

Earlier quoted context omitted.

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

> 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 evident legal knowledge.

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

#146
post #81

Earlier quoted context omitted.

I think the derision illustrates a low ethical floor in the industry. Intimidating users with legalese is standard business practice, for instance in user agreements. The fearful effect it has on the less knowledgeable, competent, and resourceful among us doesn't even seem to register. It reminds me of abusive sales techniques that victimize seniors, and the salespeople who chortle at the stupidity of those who get t…

Abusive sales techniques aren't just for the elderly, if you've ever seen a car dealer sell a Dodge Charger or similar to a gullible US military E2 at 22% interest on an 84 month term...

You're absolutely right. I happened to be thinking about specific distressed elders in my life who I have had to talk down because they are worried about getting scammed, and the emotional toll it's taken on them. Not everybody has enough expertise to navigate potential scams reliably and with minimal stress — such expertise exists on a continuum.

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

#147

Earlier quoted context omitted.

This is unlike traditional spam in the sense that it feels more legitimate.

I think that’s relative to your experience. To me it is spam and I would not even finish reading it, let alone grace it with a reply.

Isn’t that kind of the point? Your experience isn’t the relevant experience. Treating this email as spam is the obvious thing to do to you, but it is demonstrably not the case for others, the author included. Others don’t have access to your experiences.

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

#148

Earlier quoted context omitted.

My job involves DMCA pass through compliance and I have several hundred of such threats from a myriad of sources sitting in an inbox right now which say otherwise. Perhaps you've never had thousands of people torrenting movies using you as a service provider before.

I would hope someone in that position would understand the difference between a strongly worded email and a "actual legal threat". Serious lawyers don't use email.

Note that the threats are not directed at me, but at my customers.

And I consider DMCA notices to fall within the category of a certain specific type of legal threat. There are also some in the queue right now that don't read like typical DMCA notices such as you might receive for downloading the mandalorian, but look more like straight out attempts at extortion (pay us right now so that we won't sue you for torrenting backdoor sluts volume XII, etc).

As to what the ultimate end user recipients consider them to be, that's up to them and their counsel.

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

#149
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…

I'm with the other reply, genuinely curious what was submitted for review. I'm glad you were prevented from starting a study without the fundamentals in place.

I've been on the IRB submission side for Iowa State, and I can tell you it was a rigurous process, though the training emphasized why things are the way they are.

If participants are concerned about their results becoming deanonymized, the basic trust we have that there will not be negative ramifications for the participant and that participants will be genuine in their responses and participation go out the window. That's a fundamental aspect of conducting good research that is valid and as broadly applicable as possible.

Deanonymized results may not seem like a big deal, however we have to also consider future impacts on the participant. What if discrimination based on that test result was permissible and they couldn't find a job? What if later analysis shows conclusions we couldn't imagine right now that would hurt the participant? What if your boss found out you were participating in a drug trial for PrEP, outing you as likely gay? What if social norms change and new standards are applied to old data?

I'm also curious about the expensive software they were wanting. The standards shift over time, but in my experience we might have a paper key for participants to participant number until _x_ months after the study is completed, at which time it would be destroyed. The key would probably only exist on paper and would be stored separately from the data, behind a separate differently keyed locks (or encrypted separately if electronic). All of this would be explicitly defined in the documents provided to the IRB.

For surveys, Qualtrics was an approved vendor, so we would often try to do all data collection in Qualtrics.

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

#150

I received one of these as well, but the wording was different. From reading this, it sounds like the one I received was the one they send when they aren’t confident they have the correct email address. I didn’t respond. Here’s the email (I redacted my domain name and replaced it with [mydomain].) To Whom It May Concern, We are researchers at Princeton University conducting a study of how websites are implementing th…

That just sounds like a fixed version, I presume to continue the study, where the researcher is transparent about their identity and intention.
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