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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

#161

Post by dcow »

seanhunter wrote: post #136
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,…

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…

It really depends on your ethical framework doesn't it? People lie all the time for good reasons. Are those actions unethical? Further, I am struggling to see who was harmed here or how there was any ill intent. On top of that, the results of this study seem like they would be enlightening. It seems like society should want this experiment to be able to take place. Certainly a western liberal understanding of ethics is more sophisticated than “you didn’t tell them you were observing their behavior bzzzzt unethical”?

Put another way, is “right not to be observed (in public)” something we protect? If I write down my observations at a park as I watch humans interact is that unethical simply because I didn’t bring a megaphone and announce my intent? I think the problem is that despite what’s in vogue, I don’t understand how acting in a way that is not illegal even if it impacts somebody else and then observing the results is by default (unquestionably) unethical. Why is that bad? Are there some “case experiments” the research community looks to where humans where harmed that has shaped our modern understanding?

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

#162

Post by 5tefan »

I think you need some basic legal understanding to sort that kind of stuff into valid, unsure and invalid. It then depends on your confidence level if you require legal advise. Easier said than done.

From my point of view 45 days is plenty of time to read into the topic. On the other hand: Referring to 45 days was shooting way beyond the target here and unnecessary.

Scaring the author was wrong and by definition always happens without consent. That's what the author can blame the researchers for. This was turned into a 'without consent' situation and I find this to strong. The email is rather clear but is also weird enough to feel like scam.

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

#163

Post by TedDoesntTalk »

etataetaet wrote: post #106
TedDoesntTalk wrote: post #31

Earlier quoted context omitted.

Quoted post unavailable.

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:)

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

#164

Post by dqv »

userbinator wrote: post #87
Zababa wrote: post #19

Earlier quoted context omitted.

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.

Customers say weird shit in correspondence all the time and you have to fill in a lot of blanks. This would have easily imprinted “oh she lived in California at one point and wants to know if we’ll still comply with her requests” in customer service mode.

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

#165

Post by perihelions »

42jd wrote: post #66
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…

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.

Here's a thread with three different attorneys who were consulted over this email:

https://twitter.com/DanielleVEsq/status/1472105731474137094

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

#166

Post by sgentle »

TedDoesntTalk wrote: post #99
ethbr0 wrote: post #39

Earlier quoted context omitted.

> 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.

You've made several claims in your comments that don't hold up to even a few minutes of basic research. You can Google the definition of PII in the CCPA. You can Google whether emails can be legally binding.

If you don't bother to check whether the things you're saying are true, you burden everyone else with the effort of correcting you.

https://leginfo.legislature.ca.gov/faces/codes_displaySectio...

> (v) (1) “Personal information” means information that identifies, relates to, describes, is reasonably capable of being associated with, or could reasonably be linked, directly or indirectly, with a particular consumer or household. Personal information includes, but is not limited to, the following if it identifies, relates to, describes, is reasonably capable of being associated with, or could be reasonably linked, directly or indirectly, with a particular consumer or household:

> (A) Identifiers such as a real name, alias, postal address, unique personal identifier, online identifier, Internet Protocol address, email address, account name, social security number, driver’s license number, passport number, or other similar identifiers.

> (aj) “Unique identifier” or “Unique personal identifier” means a persistent identifier that can be used to recognize a consumer, a family, or a device that is linked to a consumer or family, over time and across different services, including, but not limited to, a device identifier; an Internet Protocol address; cookies, beacons, pixel tags, mobile ad identifiers, or similar technology; customer number, unique pseudonym, or user alias; telephone numbers, or other forms of persistent or probabilistic identifiers that can be used to identify a particular consumer or device that is linked to a consumer or family. For purposes of this subdivision, “family” means a custodial parent or guardian and any children under 18 years of age over which the parent or guardian has custody.

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

#167

Post by noduerme »

The study was disgusting; I've commented about it in another thread. But I think there's something else here that explains the strong reactions people are having to this.

We as software engineers are not used to being told by a government how to build our code. If China passes some law saying that you can't directly search a database without routing the call through a government server, I don't care. I'm not going to research their laws and make sure my code conforms to that. It's not my problem. It's the people of China's problem. If a company I'm working for has a legal team that says they need to accommodate that, they'll tell me they need to write some code to do it. I'm free to write it for the money, or tell them to fuck the CCP and themselves.

But if I happen to know that a client is using my code in China without meeting some regulation there, it's not my obligation to inform them. Best of luck. I'm not personally liable for that.

And so what happened here is, they went after developers and small self-coded sites. They intentionally went after the people writing the code, not the companies that have legal compliance departments.

So the big question it presents, that I think has some people hopping mad and other people too sanguine, is: Does this herald a wave of assault and blackmail against developers, where bad actors (or dumb actors, like Princeton undergrads) will use supposed infractions of local laws to try to extort settlements from makers of software? I mean, show me a piece of software, and I'm sure it would be illegal somewhere. But the question of threatening small developers this way is new - it's a new form of trolling, like patent trolling but potentially even worse. The novelty of it and the potential for abuse is why I think a lot of people have been outraged by it, more than the question of whether someone should have just ignored this particular email. It presents an entirely new chilling effect that changes the bar for anyone looking to start a website, among other things. If any newbie coder had to make sure their code conformed to every legal requirement around the planet before putting it online, their chances of being successful with new code would be nil, and our livelihoods and creative capacities would be severely diminished. Our entire culture of making things would be crushed. An entire category of artistic creativity and originality that most of our lives are based upon could be shut down completely by a blizzard of emails like this one. I don't think it's overreacting to be alarmed by it, nor to be furious at this approach being pioneered by a supposedly liberal institution.

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

#168

Post by SeanLuke »

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,…

Scientific history is filled with awful experiments involving human subjects, and ones with terrible and long-reaching impacts: consider the effect of the Tuskegee experiments on Black reticence in taking the covid vaccine. Not to mention what the Nazis did. In response to this bleak history, in the mid-1960s, scientific organizations and universities began requiring Internal Review Boards (or IRBs) which would independently review proposed experiments and block them if they failed to meet ethical standards.

The bar is very high, and with good reason: you're experimenting on humans. One of the foremost requirements is the notion of informed consent: you can't experiment on people who don't know or understand, or who didn't give you permission.

This experiment very clearly involved human subjects and very clearly violated informed consent. If the student involved did not realize this, certainly his advisor did or he'd have to be considered incompetent. And if the experiment was indeed placed before the IRB and was given an exemption, as was implied, then Princeton's IRB made a glaring and incredible error.

Had this student simply sent out a questionnaire from his Princeton email address, rather than conduct an experiment, he might have reasonably obtained IRB exemption or permission. But as I understand it, he (1) hid behind aliases so they did not know they were being experimented on, and (2) threatened legal deadlines in responding to his questions. There is no way this was ethical by IRB standards.

One thing that really bothers me is that people are attacking the blogger for using the word "consent", suggesting it's hyperbole in the sense of date rape or whatnot. This is terrible: "consent" is the standard and correct term used in human subjects research, and is a factual description of exactly what occurred.

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

#169

Post by jcims »

smsm42 wrote: post #153
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 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.

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

#170

Post by nullc »

MattGaiser wrote: post #26

I have a not at all popular and rarely used blog. I still get dozens of stupid spam emails and comments a day and often some phone calls too. This would not have caught my attention for more than 10 seconds, if I even read it at all and it did not get filtered out by various spam tools. I am quite perplexed at the people who panicked over this. It would probably rank 4th in the scariest things I have received today a…

Imagine I dig a dangerous deep pit in my front lawn by the sidewalk.

99 out of 100 people are going to safely avoid it. 1 in 100 fall in and get severely injured.

I'm still at fault even though the injury only happens rarely. And a "rare" effect can harm a lot of people when you scale up the exposure far enough.

Those scam emails also cost a lot of people time and we rightfully outlaw them. In this case, it didn't fit the modality of the common scam messages, it looks a lot more like a professional litigant trying to set the recipient up for a lawsuit.

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