I was part of a human subject research study without my consent • Hacker News Board

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

#81

Post by rectang » Sun, Dec 19, 2021, 5:24 AM UTC

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…

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 taken in.

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

#82

Post by shadowgovt » Sun, Dec 19, 2021, 5:24 AM UTC

What are the legal requirements for a blog run out of American servers by an American to be GDPR compliant these days?

I'm sort of wondering whether you can get away with responding to such a request these days with "I am not in a jurisdiction that is obligated to comply with that law, and if you choose to charge me with violating it I am not under obligation to defend myself in court nor render myself for judgment?"

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

#83

Post by et2o » Sun, Dec 19, 2021, 5:28 AM UTC

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…

Could you post your study proposal and the IRB response? This does not seem realistic.

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

#84

Post by Sebb767 » Sun, Dec 19, 2021, 5:28 AM UTC

quadrifoliate wrote: post #70

dcow wrote: post #58

Earlier quoted context omitted.

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…

> The request simply asked for a prompt response as required by law. That’s quite a stones throw from “I’ll sue you and take you for everything you own if you don’t reply”...BTW, if you are actually being threatened by a lawyer then they send certified mail or show up at your door. I think you are expected random people operating websites to share your knowledge of the legal system. I know you're right, but most peop…

> I think you [are] expected random people operating websites to share your knowledge of the legal system. I know you're right, but most people who operate a website likely don't, and these emails make them spend unnecessary time, money figuring that out; not to mention mental distress.

But if you're hosting a website, you should have that knowledge. I can't run a business and expect not to be asked about taxes, either. Honestly, as an EU citizen, if I wasn't aware of the GDPR in regards to my websites, I'd have bigger problems than some research study.

That being said, I fully agree that this mail wasn't nice and I can absolutely understand why people became nervous. But things like this are expected and the issue seems exaggerated in that light. Quite a few people seem to agree to this, too ;-)

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

#85

Post by msla » Sun, Dec 19, 2021, 5:29 AM UTC

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?

> How is asking someone questions a legal threat?

Asking questions is an implied threat often enough that a question can indeed effectively be a threat.

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

#86

Post by pdonis » Sun, Dec 19, 2021, 5:29 AM UTC

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?

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

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

#87

Post by userbinator » Sun, Dec 19, 2021, 5:29 AM UTC

Zababa wrote: post #19

TedDoesntTalk wrote: post #8

> My name is Maya Mishina, and I am a resident of Novosibirsk, Russia. If i received such an email, I would mark it as spam and move on with my life. Why did this blogger take it seriously? Does she take other forms of spam so seriously? I do feel for her stress and anxiety, but I also have to question her mental ability to filter noise. Life must be quite stressful for her overall.

You omit the following line: > I have a few questions about your process for responding to California Consumer Privacy Act (CCPA) data access requests This is the worrying part.

A Russian with questions about California...

If the first sentence didn't already raise your suspicion, the second one definitely should, and put it over the threshold for spam/scam.

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

#88

Post by pdonis » Sun, Dec 19, 2021, 5:32 AM UTC

dcow wrote: 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,…

> Can someone help me understand the ethical problem here?

The ethical problem is that you can't do research on people without their consent. The fact that the researchers knew they were doing research, not actually asking a question as an ordinary user of the website, makes a difference. Intent matters.

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

#89

Post by progman32 » Sun, Dec 19, 2021, 5:32 AM UTC

charcircuit wrote: post #76

rectang wrote: post #64

Earlier quoted context omitted.

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

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.

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

#90

Post by pdonis » Sun, Dec 19, 2021, 5:34 AM UTC

MattGaiser wrote: post #45

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.

Does this qualify as a legal threat? It just seems like a reminder of existing laws, like one sees in all manner of contracts or Terms of Service. Like the "you are obligated to pay within X days" you see on your credit card statements. Or even if there is a legal threat, do you take it seriously unless you know the source? People regularly get calls saying they are in violation of tax law and must pay.

> It just seems like a reminder of existing laws, like one sees in all manner of contracts or Terms of Service.

An email purportedly from an individual is not the same as a contract or terms of service issued by a corporation from which I am getting a service. If I, as an individual, were to send you an email asking, for example, if you are paying all the taxes you legally owe, am I just giving you "a reminder of existing laws"? Or are you going to start wondering who I am and why I am asking and wonder if something is going on behind the scenes?

> People regularly get calls saying they are in violation of tax law and must pay.

Yes, that's true. And people who make such calls are regularly considered unethical scammers who do not deserve any consideration. So why should we treat researchers who send similar emails any differently?