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

christine.website

311–320 of 382 posts

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

#311

> I go out of my way to ensure that this website handles as little user data as possible. I have gone so far to do this that the only unique identifiers I deal with are IP addresses… This page uses Cloudflare so they’re offloading data collection but it’s still being done, right?

I use Cloudflare because I've gotten DDOSed over my blog before. Being openly not male on the internet is a great way to get people DDOSing you and sending nasty letters to your employer about your moral character. Sorry I have to do this, but I don't really want to be DDOSed over my tech writing.

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

#312
post #307

Earlier quoted context omitted.

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…

That’s _not_ how it works. The fact that information comes from a human does not make something a human subject experiment. The information has to be about a human. Here the information is about a process for handling CCPA requests. We can argue about whether, in a single site operator case that also qualifies as information about a human since there’s no clear organizational policy, but I want to make it clear that information simply coming from a human does not make an experiment a human subject experiment.

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

#313
We got this email at my startup. We freaked out too, we're not from California (or even the US), we're not end-user facing so usually privacy stuff goes to our customers. We'd never received a mail like that. We responded with a kind reply, but had a lot of internal discussion. Our nice response included questions which never got answers. Because screw real people, right?

Experiments like these are training well-meaning people to ignore real privacy requests.

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

#314

Earlier quoted context omitted.

> If a Russian were able to file suit in California, wouldn't the defendant have a chance early on to ask a judge to dismiss it? a particularly foolish or over-confident defendent might represent themselves, but otherwise, I would not budget less than $2000-3000 to hire a lawyer to draft and file a response to statement of claim and show up in court to attempt to get it dismissed before it gets started.

From a British perspective this sound like madness. We have a tradition of referring baseless legal threats to the precedent of Arkell v Pressdram.

I did exactly that in my open reply to the same letter! https://blog.freeradical.zone/post/ccpa-scam-2021-12/

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

#315
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 indep…

I don’t think it’s accurate to say that any experiment where a human is simply involved qualifies as a human subject experiment. The IRB guidelines are pretty clear about the distinction between simply gathering data from a human and gathering data about a human.

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

#316
post #182

Earlier quoted context omitted.

The formal ethics of research on humans requires informed consent of participants. You can take framework of sales or management where lie is just being smart, but it is not applicable here.

it's not research on humans as such. it was intended to be research on organizations, websites large enough to be subject to the law.

I got one of these letters, and the website in question has $0.00 revenue, and an order of magnitude fewer total users than would invoke the users. The linked story here is about someone who got a letter to their personal blog.

The researchers did no (or very poor) screening.

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

#317
post #256

I am the author of this article if anyone has any questions.

Hey Xena, I’m glad your post is getting seen, too. I’m dismayed at how many people seem unable to imagine why you and I freaked out when we got letters from someone who sounded like they were a professional litigant. I’m glad to see the researchers, lawyers, and such talking about the ethical implications.

This is a messed up situation, but it’s comforting to know I’m not alone in it (although I wish for your sake that you weren’t involved).

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

#318

Earlier quoted context omitted.

I'm sorry but how can you make the assumption that "life must be quite stressful for her overall."? We know almost nothing about her life or what kind of situation she is in... It seems a little weird to make such large assumptions about anyone who you don't personally know!

Because she is extremely easily stressed out

I presume you’ve never been stressed out about anything?

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

#319
post #315

Earlier quoted context omitted.

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 indep…

I don’t think it’s accurate to say that any experiment where a human is simply involved qualifies as a human subject experiment. The IRB guidelines are pretty clear about the distinction between simply gathering data from a human and gathering data about a human.

Sure. But the study is quite specific:

> The study aims to understand how websites would respond to real users, while accommodating websites that may have less capacity to respond.

That is, they're not interested in what the website's policies are via questionnaires. They're prodding them under false pretenses to see what would happen. This is definitely human subjects research.

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

#320

Earlier quoted context omitted.

Getting “informed consent” is one of the big, guiding principles for research done on humans. My guess is the author deliberately used that language of the scientific community, to make clear that they did not agree to be part of the research.

Yeah, but the idea of “informed consent” is misunderstood broadly. There is no constitutional right to informed consent. Not all human subjects research requires informed consent — or even consent. There are other institutional ethical lapses that are much more dangerous — and there are also ethical attitudes that rest on the researcher, not the institution. Righteous indignation over something like this is dangerous…

> 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 the IRB exists in the first place. A major part of its purpose is to prevent this sort of thing from causing undue harm, i.e., by forcing people with limited incomes to seek legal counsel because they believe they're about to be sued into the ground. One of the rules generally agreed upon for this is that experiments with human test subjects must inform those humans up-front what they're getting into.

To say that the response to this "can lead to science being much harder" is an ethically wrong defense. We know it makes certain kinds of research harder; that's the point. There are certain kinds of research that directly harm their subjects, and we don't do that to people. More than that, people have a right to decide whether they want to be involved in a study, as they may personally feel endangered by it (i.e., someone who has a PTSD response to being sued may not want to deal with being fake-sued).

To say that calls to dissolve the IRB "put too much responsibility on the institution" is flat-out false. This IS the IRB's responsibility--they approve or reject studies like this specifically to avoid ethical problems like this one. To claim that this isn't the IRB's responsibility is like claiming that it's not the responsibility of the law to revoke a driver's license when someone has been driving drunk, or that it's not the responsibility of the Food and Drug Administration to reject approval for foods that contain dangerous contaminants.

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