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

christine.website

131–140 of 382 posts

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

#131

Earlier quoted context omitted.

Exactly. Maybe we need better internet safety education like my 13 year old gets in school. One of the topics is “ways to identify spam”.

But in retrospect you guess this was spam would have been incorrect. It was a carefully crafted action by a researcher. Maybe their intuition was actually better?

It is spam. Whether or not the author is a researcher or scam artist is irrelevant; it is still spam.

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

#132
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.

Calculus: Having campus-wide COVID surveillance running (before any alternative testing options had sprung up) is more important than preventing ANY RISK of someone experiencing stigma for having had COVID. I think this calculus holds up and is not that dehumanizing. I'm not saying we should get rid of all protections, but that pendulum is too far on the regulatory side right now.

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

#133

Earlier quoted context omitted.

Its just too small of a sample size to make any real judgments. One short article isn't enough information to make any meaningful comments her stress levels.

Of course. But I think this was less of a judgement and more of a sympathizing comment [0], which doesn't really require that much hard evidence. [0] At least when we assume good faith.

Ah I see what your saying! I personally took it more of a judgmental thing (especially with their second response) but I have no idea what the true intention was. Although I don't think my response was rude or anything, next time I will try to assume the best!

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

#134

Going back to study homepage here https://privacystudy.cs.princeton.edu/ there is another update, now from the lead investigator, that includes the following paragraph: "Second, our team is prioritizing a possible one-time follow-up email to recipients, identifying the academic study and recommending that they disregard the prior email. If that is feasible, and if experts in the email operator community agree with th…

This is my interpretation of their dilemma:

"We screwed up by spamming a lot of people. We like to apologize and fix our mistake. We currently have two options:

1. apologize by sending a second email. This second email will contain an apology and the phrase 'disregard the prior email'

2. apologize by some other method (e.g. this website)

Option #1 pro: reaches everyone we're previously spammed

Option #1 con: we will be spamming people a second time. If the first round of spamming puts us in legal/ethical jeopardy, then this second round of spamming could make it worst

We have not performed Option #1 yet. We do not know whether we should perform Option #1 or not. We are taking the temperature of the 'email operator community' to see whether we should performed Option #1 or not. If Option #1 gets the green-light then we'll do it ASAP."

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

#135

Earlier quoted context omitted.

Not until you're collecting data at the scale where you'd have a legal@yourdomain team to forward anything that vaguely smells like a legal inquiry. Which is why my tip applied for "non-business" cases.

Is it reasonable to expect people to know that? If I'm below that level, what are the odds of me knowing the law well enough to know that it doesn't apply to me?

> Is it reasonable to expect people to know that?

Yes. It's not hard.

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

#136
post #17

Can someone help me understand the ethical problem here? If I as an ordinary citizen contacted the webmaster with a similar worded email, the result would have been the same. The fact is that this “experiment” did not create any more or additional stress than is created for normal citizens/businesses simply engaging in normal legal activities. If submitting such a request has the potential to cause such undue stress,…

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 this point. They are not an ordinary citizen making a data request, they are researcher who thinks it's ok to lie to collect data perhaps because they think people would give different responses when faced with a genuine data subject access request than when talking to a known researcher.

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

#137

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?

> 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 end (depending on what most people consider "crippling"). Courts aren't pernicious and are very sensitive to anyone attempting to waste court time on exploitation (except in Texas courts supporting patent trolling, obv).

Any judge would have this resolved by giving the parties a 15 minute sidebar to come to an actionable resolution or sanction both sides in some motivating manner. The US legal system has a vested interest in not taking everything to a long drawn out fight, due to limited court time, even if it is presented differently in media (or the comments in these threads, which are laughable).

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

#138
post #92

Earlier quoted context omitted.

>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.

submitting a request isn't at all like a lawsuit

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

#139

Earlier quoted context omitted.

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 c…

If I understand correctly the sentiment is that the study is not in “good faith” by virtue of being a study. That’s where I’m genuinely ethically confused. It’s not like the study is bad faith (like they’re trying to trick websites into something illegal then sue them). At worst it’s neutral faith. But why is that unethical?

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

#140
post #86

Earlier quoted context omitted.

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

Asking someone questions about their compliance with a law is not the same as asking someone questions about an innocuous subject.

If I ask if your site complies with COPPA, that's not a threat that I'm going to sue you.
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