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Who exactly needs to get approval from an institutional review board (IRB)?

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Re: Who exactly needs to get approval from an institutional review board (IRB)?

#21

Post by michaelt »

As a foreigner something I've always found hilarious is that on one hand, Americans in academia act like mailing a survey to adults is Performing Research On Humans and it's wildly unethical to do so without IRB approval, informed consent, data control, the right to withdraw at any time and so on.

But at the same time American corporations will gleefully A/B test to determine the most clicked ads, the most profitable search result ordering, and the algorithmic feed parameters that maximise time spent scrolling - all with nary a thought about any ethics whatsoever.

Re: Who exactly needs to get approval from an institutional review board (IRB)?

#23

Post by kubb »

machine_ghost wrote: post #19

The fact that the very foundation of our legal system is fundamentally undemocratic (in the sense that no regular citizen can be reasonably expected to understand it) is starting to bubble up into societal awareness. With everything Trump is doing to destroy the rule of law, and all the potential for technology to help us simplify it, I can only hope that when Trump burns it all down, the people who rebuild will be w…

I think this might be a missed analogy, rule of law isn't like a house that you can burn down and rebuild stronger.

The default state without rule of law is rule of the strongest. The law is like pillars that support a tunnel. Once these are weakened, the tunnel goes crashing down, and it has to be dug again.

The society backslides to authoritarianism. And the price for digging a new tunnel is often a lot of blood.

Re: Who exactly needs to get approval from an institutional review board (IRB)?

#24

Post by nickff »

michaelt wrote: post #21

As a foreigner something I've always found hilarious is that on one hand, Americans in academia act like mailing a survey to adults is Performing Research On Humans and it's wildly unethical to do so without IRB approval, informed consent, data control, the right to withdraw at any time and so on. But at the same time American corporations will gleefully A/B test to determine the most clicked ads, the most profitable…

There's an unfortunate history of scientists harming study subjects, which caused most institutions to institute these safeguards, so as to avoid reputational harm which would cause the government to cease funding them. Corporations are not subject to political whims, though they often do have lawyers review their study techniques, as they are subject to lawsuits.

Re: Who exactly needs to get approval from an institutional review board (IRB)?

#25

Post by fluidcruft »

skwb wrote: post #10

I mean tons of retrospective studies are literally "IRB exempt" (and highlighted as such in their methods) where no explicit consent is required or needed. Physicians doing case reviews don't need consent of the patient this work. Doing retrospective analyses for defining clinical phenotypes on patient data that has been aggregated isn't needed either. Collecting clinical MRIs to do deep learning doesn't require an I…

> Collecting clinical MRIs to do deep learning doesn't require an IRB

Yes it does, but typically the IRB will waive consent and waive notification for those sorts of studies if the images can be de-identified. There's also HIPAA involved which may or may not require establishing a BAA depending on what's being done if the images can't be de-identified. This is particularly an issue with brain MRI because it is usually trivial to generate an image that can be compared to full-face photographs (i.e. can be compared to drivers license/passport type photos to reestablish identify).

And longer term you're not getting anything even in the door at the FDA without an IRB and you're not selling anything without FDA approval.

Also please note that MRI is a Class II regulated device that deposits energy in subjects/patients so it doesn't qualify for a lot of the exemptions (early last year the FDA granted IRBs the ability to do things like wave full written consent for minimal risk research for FDA-regulated research).

Re: Who exactly needs to get approval from an institutional review board (IRB)?

#26

Post by fastaguy88 »

skwb wrote: post #10

I mean tons of retrospective studies are literally "IRB exempt" (and highlighted as such in their methods) where no explicit consent is required or needed. Physicians doing case reviews don't need consent of the patient this work. Doing retrospective analyses for defining clinical phenotypes on patient data that has been aggregated isn't needed either. Collecting clinical MRIs to do deep learning doesn't require an I…

>IRBs are only REALLY required when you are intervening in patient care or pose some theoretical risk to a human.

Theoretical risk is a very broad category. IRB approval is required to download de-identified human genome sequences, in part because the genome sequence can be used to identify the individual. Drawing blood from an individual, or using blood that has been drawn for other purposes, requires IRB approval. And IRB approval is required for many sociology studies (or surveys), in part because publishing an individuals answers to a survey might put the subject at risk.

So the "theoretical risk" threshold can be very low. It's theoretical after all, so the harm need only be imaginable.

Re: Who exactly needs to get approval from an institutional review board (IRB)?

#27

Post by voxic11 »

michaelt wrote: post #21

As a foreigner something I've always found hilarious is that on one hand, Americans in academia act like mailing a survey to adults is Performing Research On Humans and it's wildly unethical to do so without IRB approval, informed consent, data control, the right to withdraw at any time and so on. But at the same time American corporations will gleefully A/B test to determine the most clicked ads, the most profitable…

That is because most academics work at institutions which receive federal funding and all human research at such institutions requires IRB approval. American corporations in general do not receive federal funding and so IRB approval is only required in limited circumstances such as research on unapproved medical drugs and procedures.

Re: Who exactly needs to get approval from an institutional review board (IRB)?

#28

Post by c048 »

machine_ghost wrote: post #19

The fact that the very foundation of our legal system is fundamentally undemocratic (in the sense that no regular citizen can be reasonably expected to understand it) is starting to bubble up into societal awareness. With everything Trump is doing to destroy the rule of law, and all the potential for technology to help us simplify it, I can only hope that when Trump burns it all down, the people who rebuild will be w…

I have little faith that, should it all be burned down, recreating it all from the ground up that it would be better.

People need to accept that what Trump is doing is only possible because of what his predecessors put down as law. That means democratic presidents too.

I didn't see Trump's detractors call all of this out when the winds were blowing their way. So no, I have no faith that rebuilding it from the ground up would make it one iota better. Not without deep societal changes.

Re: Who exactly needs to get approval from an institutional review board (IRB)?

#29

Post by derbOac »

The answer is no, you don't need permission, but you do incur a legal and ethical risk whenever you do research, and as such, the more you can do to strengthen the legal and ethical arguments in your defense, the better.

IRBs are simply a way to say "I had an independent group of ethical and legal authority review my research and they thought it was ok".

Re: Who exactly needs to get approval from an institutional review board (IRB)?

#30

Post by nxobject »

handoflixue wrote: post #15
bilbo0s wrote: post #5

Earlier quoted context omitted.

That's playing with fire. You could find yourself standing in front of a courtroom if something goes wrong, or God Forbid, if someone dies, trying to convince a judge and jury with nothing but, "I didn't need government permission". That's not a good place to be.

> if something goes wrong, or God Forbid, if someone dies Does emacs improve your typing speed? STOP! That's human experimentation!! That's the point of the article. Why would you worry someone is doing to die testing their typing speed, or filling out an online survey? You've probably conducts numerous Experimental Human Trials over your lifetime - anyone who is even slightly curious and empirical has!

> Why would you worry someone is doing to die testing their typing speed, or filling out an online survey?

No.

Because you don’t have to. This seems like a glib answer, but I assure you that, as a university employee in a research unit, I have both tested my typing speed and filled out an online survey. Whataboutism doesn’t help the conversation here become more informed.

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