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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

#301

Post by egypturnash »

kiklion wrote: post #251
pdonis wrote: post #88

Earlier quoted context omitted.

> 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.

> The ethical problem is that you can't do research on people without their consent. But can you do research on a business without the businesses consent? Or do I need a businesses consent before sending out identical resumes except one has a stereotypical minority name to attempt to judge discrimination? Because websites aren’t people. Websites are businesses. A lot don’t make money or fail. They may have a small st…

> Websites are businesses.

Websites are one or more servers that respond to the HTTP and/or HTTPS protocols with something a web browser can show. They may have a business involved. They do not necessarily have one involved.

They may simply be a goofy joke, such as https://zombo.com or http://www.abevigoda.com.

They may be a personal site, such as, well, https://christine.website. Which is a blog and a list of projects done by one person.

They may even be a front-end for a dynamic application but still not a business - I run a small Mastodon instance and it's just "a place for me and my friends to talk", not "a business"; having it grow to the size where I'd have to deal with stuff like the CCPA or the GDPR is something I absolutely do not want.

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

#302

Post by jcims »

master-lincoln wrote: post #294
xena wrote: post #258

Earlier quoted context omitted.

As the author of that article, I bet I meet that bar as soon as one of my posts gets on the front page of Hacker News, very easily if I post multiple articles which ended up getting popular like I have this month.

Why are you collecting personal information (IPs) of your readers though?

Not OP, but IPs are not always considered personal information. If you never establish the identity of the consumer directly, its not clear that the effort required to convert that address to an identity meets the bar of 'reasonably capable'.

The point of my original comment was that there is gray area here and people dismissing it outright as obviously bogus are not thinking very critically about it. I think this is a good example of that.

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

#303

Post by geekster777 »

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…

I think lying is a reasonably fundamental part of human research, or at least obfuscation. You don't tell the participants what you're testing for, since you don't want the results to be biased, and often obfuscate what you're measuring.

I think the real ethical issue is actually that the email reads like it's coming from a lawyer. It's weirdly formal and cites that a response is legally required within 45 days. As other comments have mentioned, this has the real world consequence of heavy stress where most folks would (and should) lawyer up. This is the biggest ethical issue, since the study is costing its participants nontrivial money, and without consent.

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

#304

Post by dcow »

mirker wrote: post #299
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,…

It is unethical because you are lying to people in an effort to manipulate their natural state. As a researcher, you have to balance the good in a research study versus the bad, and you can’t always predict how bad the outcome will be. There are review boards in place to make theses decisions. Here’s an example. Your doctor calls to talk to you about you sexual health. You discuss at length about all the issues you’v…

Human subjects research guidelines are very clear as to where the line is. If your research is gathering information about a person, then the subject is a human and additional steps must be taken to ensure responsible conduct (this applies in your first example case which is clearly ethically problematic because the subject was not informed). If the information you are collecting, is about a process or procedure or general data, even if it is provided by a human, the subject of the research is not a human and it’s at least not by default ethically problematic.

In regards to lying, I find such use of misdirection to be arguable ethical because 1) pseudo identities are entirely normal and expected on the internet so encountering one should not cause anybody undue stress, 2) it is not fraud, so it’s legal and does not cause harm, 3) because the experiment would not be possible without the appearance that the request came from an individual and not a research team, and 4) because if submitted to a corporation none of this discussion would even be happening. And 5) because California law requires organizations/websites to provide this information (in cases the law outlines) when it is requested which to me indicates these type of requests are supported/good/normal.

The text says: “this is not a CCPA request I just have some questions about the logistics if I were to file one” and includes a reminder that there’s possibly a legal obligation to provide these details. It’s not asking for personal details or information about a person.

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

#305

Post by seebs »

xena wrote: post #272
42jd wrote: post #78

Earlier quoted context omitted.

Just going to tag along to my comment above. I can't help but notice the difference in tone of the responses to this article vs. the one yesterday ( https://news.ycombinator.com/item?id=29599553 ) which I did not see. It seems those who participated in the thread yesterday had a quite different opinion.

As the author, I wonder how much me being not quiet but not an asshole about being nonbinary and having furry stickers in the article makes people start hitting the vitriol button.

As a person who has watched this kind of thing happen a lot: I think a lot. I had a bunch of friends on tumblr who wrote and exchanged very similar fiction and art. The ones who were known to be trans, female, enbies, or non-white got harassed a lot. The one who was understood to be a white cis male got left alone. And this is on tumblr, where the ostensible position of a large part of the user base is that white cis males are Bad People by default...

So yeah, pretty sure it's that. I almost never get harassed by people who think I'm cis male, the bulk of the harassment came from people who thought I was transmasc.

Probably the furry stuff too, which is honestly sort of terrifying, do these people not know how much infrastructure relies on stressed and overworked furries?

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

#306

Post by seebs »

radu_floricica wrote: post #244
dendriti wrote: post #193

Earlier quoted context omitted.

This is an interesting take. What "very useful research" is being blocked by which IRBs? FWIW, the author of the essay at the link you provided seems deeply ignorant of why IRBs exist. "Mere resident doctors weren’t allowed to do studies on their own. They would probably screw up and start building concentration camps or something. " really?

The irony of calling Scott Alexander "deeply ignorant" :) Human challenge trials. Hundreds of thousands of dead later, and we're still using statistics to answer questions like "is Omicron ignoring immunity", instead of answering them definitely in a few days with an absolute minimum of risk. I'd volunteer for that, btw, so would literally millions. But it's just not inside the Overton window. This isn't wisdom or ca…

The reason for this isn't "cowardice", though. I've read a lot of things by practicing people in the field on reasons for which they don't think human challenge trials produce reliable enough data. (Basically: You don't get a representative sample, and you get an unrepresentative sample in ways that are very likely to result in you getting bad data.) There's other reasons to distrust them, and I don't think your assumption that "an absolute minimum of risk" is really on the table is even defensible. And on the whole I think we probably should be using them anyway, with caveats -- but your argumentation here is bad.

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

#307

Post by seebs »

geekster777 wrote: post #303
seanhunter wrote: post #136

Earlier quoted context omitted.

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…

I think lying is a reasonably fundamental part of human research, or at least obfuscation. You don't tell the participants what you're testing for, since you don't want the results to be biased, and often obfuscate what you're measuring. I think the real ethical issue is actually that the email reads like it's coming from a lawyer. It's weirdly formal and cites that a response is legally required within 45 days. As o…

Lying is a reasonably fundamental part of research, but lying to humans can hurt them in various ways, and that's why we have human research ethics rules and standards that require an explicit process for obtaining consent to do something, even if we can't say what in advance, and debriefing and harm mitigation.

Which the IRB missed because they didn't understand that, to ask questions about a website's policy, you must get an answer from a human.

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

#308

Post by dcow »

geekster777 wrote: post #303
seanhunter wrote: post #136

Earlier quoted context omitted.

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…

I think lying is a reasonably fundamental part of human research, or at least obfuscation. You don't tell the participants what you're testing for, since you don't want the results to be biased, and often obfuscate what you're measuring. I think the real ethical issue is actually that the email reads like it's coming from a lawyer. It's weirdly formal and cites that a response is legally required within 45 days. As o…

So what I find fascinating in the academic sense is that the law is being followed naturally here and so any costs incurred are incidental and arguably not the result of this experiment but rather actually the result of the law existing in the first place so ethically it’s not clear to me whether the experiment is creating this stress or in fact the law and modern society itself creates this new possibility of stress. If it’s a problem that lawyers can get involved in response to request for information about a possible CCPA request, then perhaps the law needs rework so that it cant be construed so easily as some threat requiring you to lawyer up.

In short, if lawyers asking people to follow laws are an ethical problem, then maybe we need to address that and not get enraged about a totally legal request for information about a website’s CCPA process.

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

#309

Post by tiahura »

MR4D wrote: post #277
tiahura wrote: post #174

Earlier quoted context omitted.

Lawyers don’t imply potential litigation, they are quite explicit.

It depends on what they are doing. A lawsuit is explicit, as is a contract. But a Cease & Desist may or may not be explicit.

Then they’re not very good cease and desist letters. A C&D should state exactly what you are asking them to stop doing and exactly what will happen if they don’t. That way the other party can’t claim they didn’t understand later.

Search C&D samples on google and see for yourself.

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

#310

Post by seebs »

Godel_unicode wrote: post #135
yjftsjthsd-h wrote: post #104

Earlier quoted context omitted.

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.

Do you think this applies in general to questions of legal liability, or is this one unique? If it's unique, why should anyone think that this case is unique? If you think in general it's "not hard" to know things about legal liability, either you're Elle Woods or you're an extremely overconfident fool.
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