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CCPA Scam – Human subject research study conducted by Princeton University

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Re: CCPA Scam – Human subject research study conducted by Princeton University

#181

I don't really see the issue with this. Nothing stops someone from mass sending fake CCPA/GDPR inquiry emails. It seems like a perfectly reasonable thing to ask. Is asking people their favorite type of ice cream unethical because a very small percentage or going to have a negative mental/emotional reaction?

What s the cost of running it past the usual people so they can give an opinion ? Why do it in the shadow ?

Re: CCPA Scam – Human subject research study conducted by Princeton University

#182
post #173

Earlier quoted context omitted.

* When you do something to people to see how they act, it's a human experiment. The purpose of this study was officially "to understand how websites would respond to real users" * The participants / subjects of the study are people, not "websites" as the study claims. Websites don't read and respond to emails, people do. * The participants of this study were selected without their consent * The participants were not…

I think there's a scale issue here - if they email an entity that the CCPA actually applies to (for profit, >$25mil revenue, etc.) then it's likely going to a customer service rep who has a policy to follow and doesn't have any skin in the game, and at that point I'd agree it's not really a human experiment. Like if they emailed google with these questions, I wouldn't bat an eye. When they email a single person who r…

Even the customer service rep case may become problematic, if the entity they represent is not adequately prepared to comply with the law. Then the rep's decision of how to respond to a difficult and awkward inquiry could potentially impact things like their criminal or civil liability, employability, or reputation—things that the regulations are concerned with.

Re: CCPA Scam – Human subject research study conducted by Princeton University

#183
post #181

I don't really see the issue with this. Nothing stops someone from mass sending fake CCPA/GDPR inquiry emails. It seems like a perfectly reasonable thing to ask. Is asking people their favorite type of ice cream unethical because a very small percentage or going to have a negative mental/emotional reaction?

What s the cost of running it past the usual people so they can give an opinion ? Why do it in the shadow ?

Who are the usual people? The researchers said they submitted it to Princeton's IRB.

Re: CCPA Scam – Human subject research study conducted by Princeton University

#184

Earlier quoted context omitted.

The bit you've quoted is intended to clarify that "about whom" means the subject is the patient, even if the researcher gets the information indirectly through the patient's doctor. Earlier in the document you linked, it states: > If for the purpose of a research study [...] An investigator [...] interacts with a living individual, [...] Then The research likely involves human subjects. What's up for debate here is w…

Not at all, 1) this is clearly not an exempt study, which is a category of its own that the IRB reviews and makes a judgment on. The authors would immediately have been able to point out the protocol number of the exempt study if it were exempt. Rather it's not considered human subjects as the authors clearly state on their FAQ. 2) it seems like you're thrown off by the example, because if you ended your sentence as…

> this is clearly not an exempt study, which is a category of its own that the IRB reviews and makes a judgment on. The authors would immediately have been able to point out the protocol number of the exempt study if it were exempt. Rather it's not considered human subjects as the authors clearly state on their FAQ.

Please don't use such circular logic. We're debating whether the research properly qualifies as human subject research; we're not debating about what the IRB actually decided on that question, because they may have gotten it wrong.

> then we would be in agreement, and it'd be more obvious that the subject is, in fact, the website's policies/procedures.

The policy itself is certainly the intended subject of the research. But the methods they've chosen mean they are also collecting and analyzing information about the responses of real live humans to their interactions and interventions, and that qualifies this as human subject research irrespective of the naive intentions of the researchers. Having a non-human subject does not preclude also having a human subject.

Re: CCPA Scam – Human subject research study conducted by Princeton University

#185
post #174
post #95

I got one of these emails too. I'm going to write up something on my blog and email princeton to complain.

Here is my writeup: https://christine.website/blog/princeton-study-2021-12-17

That was a great post and I feel similarly. I try to do the right thing because I care about this stuff. If I didn’t care, I would’ve deleted the email and moved on.

Re: CCPA Scam – Human subject research study conducted by Princeton University

#187
post #153

Earlier quoted context omitted.

Who is the subject of the emails sent to personal domains?

Not sure I follow your question. An example of something that's not human subjects research would be emailing people who have websites and asking about their privacy policy. An example of something that is human subjects research would be emailing people who have websites and asking what inspired them to start a website. I realize that may seem like a subtle difference, but it's an important distinction from an IRB p…

You misunderstand the research in question. To quote from the researchers website

> When the system has even higher confidence, it sends up to several emails that simulate real user inquiries about GDPR or CCPA processes. This research method is analogous to the audit and “secret shopper” methods that are common in academic research, enabling realistic evaluation of business practices. Simulating user inquiries also enables the study to better understand how websites respond to users from different locations.

They are not just asking for the existing privacy policy, they are actively attempting to put the subjects into a realistic environment and seeing how they respond. The focus is the behavior of the individual. This should also be evident from the fact that they felt the need to lie to and threaten them...

https://privacystudy.cs.princeton.edu/

Re: CCPA Scam – Human subject research study conducted by Princeton University

#188

Earlier quoted context omitted.

It could be your university's definition. Princeton's definition doesn't include information about organizations.[1] It would include information about solo projects arguably. [1] https://researchdata.princeton.edu/research-lifecycle-guide/...

This seems pretty cut-and-dried to me. > A human subject means a living individual about whom an investigator (whether professional or student) who is conducting research: > (i) Obtains information or biospecimens through intervention or interaction with the individual, and uses, studies, or analyzes the information or biospecimens The information they were looking for is 'how does this person respond when they recei…

I think individuals in a research group in a department in a university in a city in a state in a republic know organizations contain individuals.

Your interpretation would make most of the definition redundant. They could just say any individual an investigator interacts with. IRBs don't interpret it like that.

Re: CCPA Scam – Human subject research study conducted by Princeton University

#189

Earlier quoted context omitted.

Not at all, 1) this is clearly not an exempt study, which is a category of its own that the IRB reviews and makes a judgment on. The authors would immediately have been able to point out the protocol number of the exempt study if it were exempt. Rather it's not considered human subjects as the authors clearly state on their FAQ. 2) it seems like you're thrown off by the example, because if you ended your sentence as…

> this is clearly not an exempt study, which is a category of its own that the IRB reviews and makes a judgment on. The authors would immediately have been able to point out the protocol number of the exempt study if it were exempt. Rather it's not considered human subjects as the authors clearly state on their FAQ. Please don't use such circular logic. We're debating whether the research properly qualifies as human…

> Please don't use such circular logic. We're debating whether the research properly qualifies as human subject research; we're not debating about what the IRB actually decided on that question, because they may have gotten it wrong.

Yes that's what we're debating. But you used the word "exemption" which has a specific technical meaning in human subjects research, and I'm saying that it's not an exemption. There are 8 tests for exemption, and I'm pointing out that this is not an IRB exemption.

> The policy itself is certainly the intended subject of the research. But the methods they've chosen mean they are also collecting and analyzing information about the responses of real live humans to their interactions and interventions, and that qualifies this as human subject research irrespective of the naive intentions of the researchers. Having a non-human subject does not preclude also having a human subject.

Do you have a source for this interpretation? It sounds like this is your interpretation, but not the federal one. Following your interpretation, surveys of companies (e.g. emailing contact@company.com to ask how many employees they have) would fall under the definition of human subjects.

Thanks for the continued conversation, but I think this is my last comment. Nothing personal, but this is a bit exhausting. It seems like you're debating two other people on this forum about this exact definition, and you might consider that maybe you're just wrong about your interpretation?

Here's one final source, if it helps provide closure:

To meet the definition of human subjects, you must ask “about whom” questions. Questions about your respondents' attitudes, opinions, preferences, behavior, experiences, or characteristics, are all considered “about whom” questions. Questions about an organization, a policy, or a process are “about what” questions.

https://campusirb.duke.edu/resources/guides/defining-researc...

Re: CCPA Scam – Human subject research study conducted by Princeton University

#190

Earlier quoted context omitted.

> this is clearly not an exempt study, which is a category of its own that the IRB reviews and makes a judgment on. The authors would immediately have been able to point out the protocol number of the exempt study if it were exempt. Rather it's not considered human subjects as the authors clearly state on their FAQ. Please don't use such circular logic. We're debating whether the research properly qualifies as human…

> Please don't use such circular logic. We're debating whether the research properly qualifies as human subject research; we're not debating about what the IRB actually decided on that question, because they may have gotten it wrong. Yes that's what we're debating. But you used the word "exemption" which has a specific technical meaning in human subjects research, and I'm saying that it's not an exemption. There are…

> Do you have a source for this interpretation? It sounds like this is your interpretation, but not the federal one. Following your interpretation, surveys of companies (e.g. emailing contact@company.com to ask how many employees they have) would fall under the definition of human subjects.

Sure. Click through the NIH's Decision Tool [1], and you'll find that collecting information only through surveys or interviews leads to the tool saying "Your study is most likely considered exempt from the human subject's regulations, category 2 (Exemption 2)." That particular exemption requires that the research qualify under at least one of three further criteria. (I'll also note that for someone who complained about people not referring to primary sources, you seem to be citing more .edu sources than .gov sources.)

Furthermore, this particular research unquestionably went beyond mere surveys and interviews. Legal threats under false pretenses are way outside those bounds. So even if a mere survey about how many employees a company has doesn't qualify as human research (which I'm willing to concede), that doesn't help settle the question about this research.

[1] https://grants.nih.gov/policy/humansubjects/hs-decision.htm

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