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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

#361

Post by Beldin »

dr_dshiv wrote: post #324
dawnbreez wrote: post #320

Earlier quoted context omitted.

> Not all human subjects research requires informed consent — or even consent. There have been multiple examples of this going horribly, horribly wrong. (Naturally, the worst examples were government-funded and ran during the Cold War.) As a society, we have since concluded that at bare minimum, people should know they are being experimented on--and even that isn't enough to stop things from going badly. This is why…

I'd recommend reading up on why not all human subjects research requires informed consent. For instance, there are exceptions for human subjects research that takes place on normal educational practices. This carve out was made because of the difficulty of getting unanimous consent from all parents during normal classroom education. With greater oversight and full informed consent, a lot of educational research simpl…

Wait, your motivating example is keeping parents out of the loop... do you give this example to show that it usually goes really bad when informed consent is missing? Or do you mean to argue that it's okay to experiment on kids without consent, because the end justifies the means? Or a third option, that I'm overlooking currently?

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

#362

Post by Beldin »

xena wrote: post #295
master-lincoln wrote: post #294

Earlier quoted context omitted.

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

Really I have the nginx logs going to the disk so that I can have prometheus-nginx scrape them for referer patterns (it getting above a certain threshold for a given referer is how I know when my article got posted somewhere), status code rates and overall to make sure that the core functions of the site (such as the RSS feed) are working like I expect. I could probably change it to write the logs to a unix fifo inst…

Thanks! That's an informative reply.

I was wondering whether not logging could be an option. That's now quite clear.

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

#363

Post by jollybean »

Ekaros wrote: post #360
jollybean wrote: post #357

Earlier quoted context omitted.

Lying about one's identity is unethical.

So is not following laws... Or being certain that they don't apply.

It's not clear that anyone was breaking laws, and it's absurd to suggest a random person with a website in the middle of nowhere is going to have insight into the laws of 165 different national jurisdictions.

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

#364

Post by dqv »

userbinator wrote: post #354
dqv wrote: post #164

Earlier quoted context omitted.

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.

The "is this even a customer" filter should catch that.

We're operating in reality where the answer to "is this even a customer" is often "unsure - to be determined", not an imagined scenario where software with 100% accuracy tells us when someone isn't.

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

#365

Post by tiahura »

MR4D wrote: post #359
tiahura wrote: post #309

Earlier quoted context omitted.

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.

You mean like this? “ Your failure to abide by your Agreements will result in [redacted] pursuing any and all available remedies, including but not limited to injunctive relief and monetary damages. ” So, I don’t consider this very specific (you may, and that’s fine but then our disagreement is about something different).

Yes, language like that. Put it this way, a cease and desist should contain an IF THEN. If you don’t stop copying my CD then I will sue you for injunctive relief and monetary damages.

Contrast that to the subject email. There’s no if you don’t respond then I will sue you. It’s not a threat, it’s a request and the requestor’s reference to a statute that they think might apply.

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

#366

Post by JabavuAdams »

JabavuAdams wrote: post #279
MattGaiser wrote: post #45

Earlier quoted context omitted.

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.

Unless one is socially inept, it reads as a veiled threat. When someone asks one a question, it is likely to the point of certainty that social humans will consider (1) who is asking (2) why are they asking (3) what is the tone and (4) what is the text of the question. Failing to understand this or refusing to acknowledge it just means that one is bad at humans.

Lol, so on re-reading this, my tone comes off as patronizing and dickish. Unintentional demonstration.

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

#367

Post by pdonis »

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.

No, some websites are tools used by businesses to help achieve their business goals.

Is the website on which we are having this conversation a business?

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

#368

Post by pdonis »

charcircuit wrote: post #140
pdonis wrote: post #86

Earlier quoted context omitted.

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.

You might claim that it isn't, but if you are just asking me that question out of the blue I'm certainly going to wonder why you're asking and what you're up to. A random individual that goes around asking individuals who have websites if their websites comply with some law can't claim that they're just behaving in a normal everyday manner.

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

#369

Post by dr_dshiv »

Beldin wrote: post #361
dr_dshiv wrote: post #324

Earlier quoted context omitted.

I'd recommend reading up on why not all human subjects research requires informed consent. For instance, there are exceptions for human subjects research that takes place on normal educational practices. This carve out was made because of the difficulty of getting unanimous consent from all parents during normal classroom education. With greater oversight and full informed consent, a lot of educational research simpl…

Wait, your motivating example is keeping parents out of the loop... do you give this example to show that it usually goes really bad when informed consent is missing? Or do you mean to argue that it's okay to experiment on kids without consent, because the end justifies the means? Or a third option, that I'm overlooking currently?

Yes, that’s correct. Because conducting experiments on things like “does this approach to teaching fractions work better” is important for society. The ends are good and the means are reasonable. We aren’t injecting kids with chemicals—we can only experiment with “normal” educational practice. It shows why nuance is important— and why requiring informed consent isn’t always the most ethical choice for society.

Ethical action involves nuance! It is very comforting to think that the world is black and white, good and bad. But it isn’t. Why is this so difficult to communicate?

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

#370

Post by impendingchange »

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…

In light of the current experimental "trial" drug being pushed nowadays, _everyone_ should consider themselves a part of the trial, because even if you do not take the drug, you are part of the control group.
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