4 ms·

I thought I remembered a proposal to create some new categorical exemptions from IRB review, one of which was somehow related to studies where you just talk to

by schoen 9y ago

I thought I remembered a proposal to create some new categorical exemptions from IRB review, one of which was somehow related to studies where you just talk to people. (I've been interviewed by several social scientists and very often their "protocols", consisting exclusively of informal interviews, had clearly been through extensive IRB reviews, which felt super-odd because journalists wouldn't need any ethical review at all in order to carry out exactly the same interview in exactly the same way.) On the other hand, you clearly can harm people in various ways by or as a result of interviewing them, for example by breaching confidentiality, by being forced to breach confidentiality, or by making them feel bad about themselves by insulting them during the interview or just by bringing up painful and distressing memories. And also it's hard for researchers who aren't doctors to extend the same level of legal protection to what their research subjects tell them: https://www.socialsciencespace.com/2017/01/social-science-needs-doctor-patient-confidentiality/ https://www.socialsciencespace.com/2017/01/social-science-ne... So maybe one idea would be to create a categorical IRB exemption for studies that combine non-invasive observations, or existing datasets, with interviews not reasonably expected to be distressing to the subjects, and conducted subject to otherwise existing norms on patient confidentiality and medical privacy? (recognizing that limited legal protection for that confidentiality still poses problems for some studies) (I'm certainly happy to apply the Chesterton's fence principle and learn more about the history of unethical experimentation before seriously advocating this.)

munin 9y ago
> which felt super-odd because journalists wouldn't need any ethical review at all in order to carry out exactly the same interview in exactly the same way. Journalists don't have a history of injecting you with syphilis just to see what happens, though.
- schoen 9y ago
  Neither do anthropologists or computer scientists, who are both now subject to IRB review in universities.
  - munin 9y ago
    Computer scientists will do stuff like expose people in repressive regimes to internet censors (http://conferences.sigcomm.org/sigcomm/2015/pdf/papers/p653.pdf http://conferences.sigcomm.org/sigcomm/2015/pdf/papers/p653....) or hack your Facebook account and slurp all your data (http://www2013.wwwconference.org/companion/p751.pdf http://www2013.wwwconference.org/companion/p751.pdf) Though ENCORE was done with IRB approval, the community is mostly unsure how that was possible...
    - schoen 9y ago
      Thanks for the examples. I'd agree that they show that computer science research is capable of harming people. Edit: although I don't think they change my intuition that it's strange that high-risk invasive procedures that people expected to cause grave injury are dealt with by the same oversight mechanism as interviews (even though I'm very convinced of the ethical importance of strong confidentiality protections for interviews). Second edit: I'm also aware that IRBs aren't only inspired by Tuskegee and Nazi experiments, but also by stuff like the Milgram and Zimbardo experiments which didn't involve invasive interventions.
      - munin 9y ago
        In IRB's that I've participated in, low-risk interviews can go through expedited review, and though it's still happening under the IRB, it's far from the same process as something involving say, injections, imaging, gathering information about potential criminal involvement, or deception. Though, every IRB is different. Which is another problem!
- apsec112 9y ago
  Every large group will have some people who commit horrible acts, including the media. "Hate radio", for example, was a major contributor to the Rwandan genocide. https://en.wikipedia.org/wiki/Radio_T%C3%A9l%C3%A9vision_Libre_des_Mille_Collines https://en.wikipedia.org/wiki/Radio_T%C3%A9l%C3%A9vision_Lib...
  - goialoq 9y ago
    Pople who are intentionally committing a genocide are out of scope for IRBs, since they are already refusing any kind of oversight because they know what they are doing is wrong.
- occam 9y ago
  Who has ever done that?
  - schoen 9y ago
    As mentioned elsewhere in this thread, https://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment https://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment is one of the most important parts of the history of IRBs.
    - occam 9y ago
      Tuskegee syphilis experiment, ok. However, as bad as that was, no one was injected with syphilis.
      - schoen 9y ago
        I thought I remembered that the Public Health Service intentionally infected people in order to see what would happen, but Wikipedia seems to say that they intentionally withheld treatment from people who were already infected and deceived them about this, rather than causing the infections themselves (although some of the study subjects spread the disease to other people during the course of the study, which were new infections that could have been prevented by treatment).
        mjevans 9y ago
        I believe a modern design for this study would compare different kinds of treatment (but not the elimination of treatment... yikes).
        goialoq 9y ago
        Modern policy for medical research is that everyone gets a best available known treatment, and some people also get an experimental unknown treatment.
        9y ago
yk 9y ago
The problem is "reasonably expected." For an recent example consider the 70.000 Tinder (?) profiles now located on the piratebay. The guy who did that was likely preoccupied with questions like which scraper to use, and just never thought about "edge cases" like homosexuals in Saudi Arabia. Clearly someone is not reasonable here, but is this a reasonable oversight on the researcher's part?
- deleted 9y ago
  [deleted]
cma 9y ago
Here's a famous example of a "just talk" experiment that went wrong (it literally created the Unabomber): https://www.theatlantic.com/magazine/archive/2000/06/harvard-and-the-making-of-the-unabomber/378239/ https://www.theatlantic.com/magazine/archive/2000/06/harvard...
- Moshe_Silnorin 9y ago
  Didn't they dose him with LSD?
- skybrian 9y ago
  From the article: "Murray subjected his unwitting students, including Kaczynski, to intensive interrogation — what Murray himself called 'vehement, sweeping, and personally abusive' attacks, assaulting his subjects’ egos and most-cherished ideals and beliefs." I guess that's technically "just talk" but it's not what most people would think of as "just talk".
mncharity 9y ago
> interviews not reasonably expected to be distressing to the subjects I did some guerrilla street usability testing, of animated science education video fragments.[1] About the size of objects - sort of like Powers of Ten. During red lights at busy street crossings. Even with a very small test population, I saw people distressed by surprising things. Mention of millimeters reminded an elderly Brit of unpleasant childhood experiences when learning metric. A college student expressed distress over a character breaking the head off an (enlarged to arm-sized) T4 bacteriophage. I had someone run away, across the street, saying "how could you show me something so disgusting!", following a quiet background sound effect, a child's hacking cough, accompanying the word "virus". When I later stopped the video immediately after it to get feedback, most people were "what cough?". Many people were variously distressed by the mention or discussion of viruses and bacteria. Which I didn't expect, but in retrospect seems unsurprising - for many, they have strong and negative associations. They get very bad press. Think "fun story about viruses!" having the emotional flavor of "fun story about genocide!". So at this point, I'm unclear on what can reasonably be expected to not distress people. "How about this nice weather we've been having?"... "Houston has been bringing back painful memories of my family losing its home and business to flooding. :(" Somewhat tongue in cheek, but if you are aiming for do no harm...? [1] There are some bits of the test videos in the "How to remember sizes" section of http://www.clarifyscience.info/part/Atoms http://www.clarifyscience.info/part/Atoms .
- sevenfive 9y ago
  I dunno about you but I think myoviruses look creepy as shit. https://i.pinimg.com/236x/cb/e0/59/cbe0591ea18e0afa4686bd3f4f17ddae--biotechnology-virus.jpg https://i.pinimg.com/236x/cb/e0/59/cbe0591ea18e0afa4686bd3f4...
  - mncharity 9y ago
    Creepy? The flailing sticky legs that glom on to you? The teeth that punch a hole in your side? The high-pressure vessel driving high-speed injection? Which only gets the DNA string half way in, so it squirms the rest of the way in, ratcheting as molecules attach and begin transcribing your corruption? The minute from bite, to being doomed? As you frolick in the summer waves, every cup of seawater is war zone, filled with massive and deadly warfare between bacteria and viruses. Ten billion combatants. Bacteria shedding extracellular vesicles like anti-missile flares. Mass dumping of chemical weapons. Suicidal sacrifices. Exploding victims. 2 day bacterial survival - 50%. And most, they haven't been cultured, haven't been sequenced - we haven't even given them names.
forapurpose 9y ago
Other issues also still apply even when there is no physical risk. For example, vulnerable populations like prisoners or children or your students may feel that they are (and may really be) forced to participate, that they can't say no. Some may be unable to give proper consent, such as weakened hospital patients on morphine or severe psychiatric patients. > journalists wouldn't need any ethical review at all in order to carry out exactly the same interview in exactly the same way.) Journalists have codes of ethics and laws they are subject to.

by schoen 9y ago

munin 9y ago

> which felt super-odd because journalists wouldn't need any ethical review at all in order to carry out exactly the same interview in exactly the same way. Journalists don't have a history of injecting you with syphilis just to see what happens, though.

schoen 9y ago
Neither do anthropologists or computer scientists, who are both now subject to IRB review in universities.
- munin 9y ago
  Computer scientists will do stuff like expose people in repressive regimes to internet censors (http://conferences.sigcomm.org/sigcomm/2015/pdf/papers/p653.pdf http://conferences.sigcomm.org/sigcomm/2015/pdf/papers/p653....) or hack your Facebook account and slurp all your data (http://www2013.wwwconference.org/companion/p751.pdf http://www2013.wwwconference.org/companion/p751.pdf) Though ENCORE was done with IRB approval, the community is mostly unsure how that was possible...
  - schoen 9y ago
    Thanks for the examples. I'd agree that they show that computer science research is capable of harming people. Edit: although I don't think they change my intuition that it's strange that high-risk invasive procedures that people expected to cause grave injury are dealt with by the same oversight mechanism as interviews (even though I'm very convinced of the ethical importance of strong confidentiality protections for interviews). Second edit: I'm also aware that IRBs aren't only inspired by Tuskegee and Nazi experiments, but also by stuff like the Milgram and Zimbardo experiments which didn't involve invasive interventions.
    - munin 9y ago
      In IRB's that I've participated in, low-risk interviews can go through expedited review, and though it's still happening under the IRB, it's far from the same process as something involving say, injections, imaging, gathering information about potential criminal involvement, or deception. Though, every IRB is different. Which is another problem!
apsec112 9y ago
Every large group will have some people who commit horrible acts, including the media. "Hate radio", for example, was a major contributor to the Rwandan genocide. https://en.wikipedia.org/wiki/Radio_T%C3%A9l%C3%A9vision_Libre_des_Mille_Collines https://en.wikipedia.org/wiki/Radio_T%C3%A9l%C3%A9vision_Lib...
- goialoq 9y ago
  Pople who are intentionally committing a genocide are out of scope for IRBs, since they are already refusing any kind of oversight because they know what they are doing is wrong.
occam 9y ago
Who has ever done that?
- schoen 9y ago
  As mentioned elsewhere in this thread, https://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment https://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment is one of the most important parts of the history of IRBs.
  - occam 9y ago
    Tuskegee syphilis experiment, ok. However, as bad as that was, no one was injected with syphilis.
    - schoen 9y ago
      I thought I remembered that the Public Health Service intentionally infected people in order to see what would happen, but Wikipedia seems to say that they intentionally withheld treatment from people who were already infected and deceived them about this, rather than causing the infections themselves (although some of the study subjects spread the disease to other people during the course of the study, which were new infections that could have been prevented by treatment).
      - mjevans 9y ago
        I believe a modern design for this study would compare different kinds of treatment (but not the elimination of treatment... yikes).
        goialoq 9y ago
        Modern policy for medical research is that everyone gets a best available known treatment, and some people also get an experimental unknown treatment.
        9y ago

yk 9y ago

The problem is "reasonably expected." For an recent example consider the 70.000 Tinder (?) profiles now located on the piratebay. The guy who did that was likely preoccupied with questions like which scraper to use, and just never thought about "edge cases" like homosexuals in Saudi Arabia. Clearly someone is not reasonable here, but is this a reasonable oversight on the researcher's part?

deleted 9y ago
[deleted]

cma 9y ago

Here's a famous example of a "just talk" experiment that went wrong (it literally created the Unabomber): https://www.theatlantic.com/magazine/archive/2000/06/harvard-and-the-making-of-the-unabomber/378239/ https://www.theatlantic.com/magazine/archive/2000/06/harvard...

Moshe_Silnorin 9y ago
Didn't they dose him with LSD?
skybrian 9y ago
From the article: "Murray subjected his unwitting students, including Kaczynski, to intensive interrogation — what Murray himself called 'vehement, sweeping, and personally abusive' attacks, assaulting his subjects’ egos and most-cherished ideals and beliefs." I guess that's technically "just talk" but it's not what most people would think of as "just talk".

mncharity 9y ago

> interviews not reasonably expected to be distressing to the subjects I did some guerrilla street usability testing, of animated science education video fragments.[1] About the size of objects - sort of like Powers of Ten. During red lights at busy street crossings. Even with a very small test population, I saw people distressed by surprising things. Mention of millimeters reminded an elderly Brit of unpleasant childhood experiences when learning metric. A college student expressed distress over a character breaking the head off an (enlarged to arm-sized) T4 bacteriophage. I had someone run away, across the street, saying "how could you show me something so disgusting!", following a quiet background sound effect, a child's hacking cough, accompanying the word "virus". When I later stopped the video immediately after it to get feedback, most people were "what cough?". Many people were variously distressed by the mention or discussion of viruses and bacteria. Which I didn't expect, but in retrospect seems unsurprising - for many, they have strong and negative associations. They get very bad press. Think "fun story about viruses!" having the emotional flavor of "fun story about genocide!". So at this point, I'm unclear on what can reasonably be expected to not distress people. "How about this nice weather we've been having?"... "Houston has been bringing back painful memories of my family losing its home and business to flooding. :(" Somewhat tongue in cheek, but if you are aiming for do no harm...? [1] There are some bits of the test videos in the "How to remember sizes" section of http://www.clarifyscience.info/part/Atoms http://www.clarifyscience.info/part/Atoms .

sevenfive 9y ago
I dunno about you but I think myoviruses look creepy as shit. https://i.pinimg.com/236x/cb/e0/59/cbe0591ea18e0afa4686bd3f4f17ddae--biotechnology-virus.jpg https://i.pinimg.com/236x/cb/e0/59/cbe0591ea18e0afa4686bd3f4...
- mncharity 9y ago
  Creepy? The flailing sticky legs that glom on to you? The teeth that punch a hole in your side? The high-pressure vessel driving high-speed injection? Which only gets the DNA string half way in, so it squirms the rest of the way in, ratcheting as molecules attach and begin transcribing your corruption? The minute from bite, to being doomed? As you frolick in the summer waves, every cup of seawater is war zone, filled with massive and deadly warfare between bacteria and viruses. Ten billion combatants. Bacteria shedding extracellular vesicles like anti-missile flares. Mass dumping of chemical weapons. Suicidal sacrifices. Exploding victims. 2 day bacterial survival - 50%. And most, they haven't been cultured, haven't been sequenced - we haven't even given them names.

forapurpose 9y ago

Other issues also still apply even when there is no physical risk. For example, vulnerable populations like prisoners or children or your students may feel that they are (and may really be) forced to participate, that they can't say no. Some may be unable to give proper consent, such as weakened hospital patients on morphine or severe psychiatric patients. > journalists wouldn't need any ethical review at all in order to carry out exactly the same interview in exactly the same way.) Journalists have codes of ethics and laws they are subject to.