7 ms·

I'm confused how this is human experimentation. Were they not merely collecting information on how a site handles these requests? Is it because they erroneously

I'm confused how this is human experimentation. Were they not merely collecting information on how a site handles these requests? Is it because they erroneously sent emails to sites that do not fall under the umbrella of the law they were examining? An email asking an organization for answers to questions is human experimentation? I must be missing something.

wtallis 5y ago
> Were they not merely collecting information on how a site handles these requests? No. Obviously not. How could you have missed the fact that they were "collecting information" under false pretenses?
- eli 5y ago
  With a false legal threat, no less
nikitaga 5y ago
* When you do something to people to see how they act, it's a human experiment. The purpose of this study was officially "to understand how websites would respond to real users" * The participants / subjects of the study are people, not "websites" as the study claims. Websites don't read and respond to emails, people do. * The participants of this study were selected without their consent * The participants were not told that they are in a study, nor the purpose of that study * The participants were lied to, as the researcher pretended to be someone else * The researcher deliberately communicated in a way that heavily implied legal consequences if they don't get what they demand * The researcher's threats and demands do not actually match what is afforded to them by the law * The study caused undue stress and financial losses (e.g. hiring lawyers) to the participants, including those that were not subject to CCPA at all. I don't care what labels you choose to put or not put on it, it's a shitty, abusive study that should have never passed ethics review.
- seoaeu 5y ago
  > When you do something to people to see how they act, it's a human experiment. That's not the official definition an IRB would use. The official definition is a lot less broad than a lot of people on this thread seem to think. It requires that are collecting biospecimens, identifiable private information, or certain kinds of information about a specific person. [0] [0]: https://grants.nih.gov/policy/humansubjects/research.htm https://grants.nih.gov/policy/humansubjects/research.htm
  - gpm 5y ago
    You're misreading it, the definition quoted on that page is very broad, specifically a human subject is the following with irrelevant clauses in or's removed and replaced with [or ...]: > a living individual about whom an investigator (whether professional or student) conducting research: > - Obtains information [or ...] through [... or] interaction with the individual, and uses, studies, or analyzes the information [or ...]; or > - [...] The actual legal definition is here [1], and further clarifies that "interaction" is very broad, specifically "Interaction includes communication [or ...] between investigator and subject." This clearly qualifies OP as a human subject and this as human subjects research. [1] Search "(e)(1) Human subject": https://www.hhs.gov/ohrp/regulations-and-policy/regulations/45-cfr-46/revised-common-rule-regulatory-text/index.html https://www.hhs.gov/ohrp/regulations-and-policy/regulations/...
    - seoaeu 5y ago
      The key phrase is: > a living individual about whom an investigator (whether professional or student) conducting research: The mere fact that you're interacting with a human doesn't trigger it. If you're associated with a university, I'd encourage you to reach out to your IRB and ask them. The fact that the researchers in this case specifically were told by their IRB that it wasn't human subject research should be a good hint
      - wtallis 5y ago
        Can you explain a bit more why you added emphasis to "about whom" in the clause you quoted? I don't see how those two words create any kind of exception; this research gathered information about how the humans behaved in response to the requests and threats. Are you accidentally reading an "is" into that clause to interpret it as "about whom an investigator is conducting research"? What matters is not whether the researcher considers the human to be the target of the research, but whether the human (or their privacy) is actually affected by the research.
danaris 5y ago
> An email asking an organization for answers to questions is human experimentation? Organizations are made up of humans. Human experimentation is very broadly defined, for IRB purposes. As I understand it, if you're going to be asking humans to interact with researchers, in any way, and gathering data based on those interactions, that's human subjects research, and requires reasonable scrutiny from the IRB. Source: I have worked fairly extensively with my own university's IRB, as I put together and maintain the website that they use to handle submissions.
- pseudalopex 5y ago
  It could be your university's definition. Princeton's definition doesn't include information about organizations.[1] It would include information about solo projects arguably. [1] https://researchdata.princeton.edu/research-lifecycle-guide/human-subjects https://researchdata.princeton.edu/research-lifecycle-guide/...
  - jameshart 5y ago
    This seems pretty cut-and-dried to me. > A human subject means a living individual about whom an investigator (whether professional or student) who is conducting research: > (i) Obtains information or biospecimens through intervention or interaction with the individual, and uses, studies, or analyzes the information or biospecimens The information they were looking for is 'how does this person respond when they receive an email threatening legal action under CCPA?' A human subject means ... a living individual ... about whom an investigator... obtains information... through intervention or interaction... and studies... the information. That they mistakenly thought they were investigating how "an organization" responds when they receive an email is based on an erroneous assumption that an organization is itself an autonomous, sentient entity whose behavior can be studied independently of its human constituents.
    - pseudalopex 5y ago
      I think individuals in a research group in a department in a university in a city in a state in a republic know organizations contain individuals. Your interpretation would make most of the definition redundant. They could just say any individual an investigator interacts with. IRBs don't interpret it like that.
eli 5y ago
One of the requests landed on my desk to figure out how to process. I'm a human. Others have received them on personal domains where the "organization" is just them.
tqi 5y ago
To me yes, for the same reason pulling fire alarms at various company office buildings to see how they respond would be considered human experimentation.
tw04 5y ago
How would a website “respond” without human interaction? If all they were testing was whether or not a website had an automated response to emails with ccpa in the subject or body they could have included a disclaimer at the end of the email about what they were doing. This was clearly seeking a human response and is a human experiment.
- RubberSoul 5y ago
  That's not the definition of human subjects research. Not everything that involves a human responding to questions is human subjects research. A lot of comments in this thread are uninformed about the relevant definitions. You can think the study is poorly designed, unethical, etc. But if they're not obtaining data about a living individual, then it's not human subjects research.
  - tw04 5y ago
    You appear to be the one uninformed about the definition of human subject research. >But if they're not obtaining data about a living individual, then it's not human subjects research. Sure, if you completely ignore the other half of the definition, per the NIH: https://grants.nih.gov/policy/humansubjects/research.htm https://grants.nih.gov/policy/humansubjects/research.htm > Obtains information or biospecimens through intervention or interaction with the individual, and uses, studies, or analyzes the information or biospecimens; They are absolutely collecting information to analyze by interacting with the individual.
ineedasername 5y ago
Any research that at all involves a human being-- performed by an institution governed by laws that mandate the existence of an IRB-- must be reviewed by their IRB. Keep in mind that IRB's govern research, not just experimentation. We don't even need to get into the weeds on this just being "answers to questions". All you need to do is look at the human impact: This research study has caused anxiety, time, and potentially money to many people being asked to unknowingly participate in the study. IRB's exist to evaluate-- among other things-- potential adverse impacts on people involved in a study. This has had an adverse impact and should not have been allowed through IRB review in this form.

wtallis 5y ago

> Were they not merely collecting information on how a site handles these requests? No. Obviously not. How could you have missed the fact that they were "collecting information" under false pretenses?

eli 5y ago
With a false legal threat, no less

nikitaga 5y ago

* When you do something to people to see how they act, it's a human experiment. The purpose of this study was officially "to understand how websites would respond to real users" * The participants / subjects of the study are people, not "websites" as the study claims. Websites don't read and respond to emails, people do. * The participants of this study were selected without their consent * The participants were not told that they are in a study, nor the purpose of that study * The participants were lied to, as the researcher pretended to be someone else * The researcher deliberately communicated in a way that heavily implied legal consequences if they don't get what they demand * The researcher's threats and demands do not actually match what is afforded to them by the law * The study caused undue stress and financial losses (e.g. hiring lawyers) to the participants, including those that were not subject to CCPA at all. I don't care what labels you choose to put or not put on it, it's a shitty, abusive study that should have never passed ethics review.

seoaeu 5y ago
> When you do something to people to see how they act, it's a human experiment. That's not the official definition an IRB would use. The official definition is a lot less broad than a lot of people on this thread seem to think. It requires that are collecting biospecimens, identifiable private information, or certain kinds of information about a specific person. [0] [0]: https://grants.nih.gov/policy/humansubjects/research.htm https://grants.nih.gov/policy/humansubjects/research.htm
- gpm 5y ago
  You're misreading it, the definition quoted on that page is very broad, specifically a human subject is the following with irrelevant clauses in or's removed and replaced with [or ...]: > a living individual about whom an investigator (whether professional or student) conducting research: > - Obtains information [or ...] through [... or] interaction with the individual, and uses, studies, or analyzes the information [or ...]; or > - [...] The actual legal definition is here [1], and further clarifies that "interaction" is very broad, specifically "Interaction includes communication [or ...] between investigator and subject." This clearly qualifies OP as a human subject and this as human subjects research. [1] Search "(e)(1) Human subject": https://www.hhs.gov/ohrp/regulations-and-policy/regulations/45-cfr-46/revised-common-rule-regulatory-text/index.html https://www.hhs.gov/ohrp/regulations-and-policy/regulations/...
  - seoaeu 5y ago
    The key phrase is: > a living individual about whom an investigator (whether professional or student) conducting research: The mere fact that you're interacting with a human doesn't trigger it. If you're associated with a university, I'd encourage you to reach out to your IRB and ask them. The fact that the researchers in this case specifically were told by their IRB that it wasn't human subject research should be a good hint
    - wtallis 5y ago
      Can you explain a bit more why you added emphasis to "about whom" in the clause you quoted? I don't see how those two words create any kind of exception; this research gathered information about how the humans behaved in response to the requests and threats. Are you accidentally reading an "is" into that clause to interpret it as "about whom an investigator is conducting research"? What matters is not whether the researcher considers the human to be the target of the research, but whether the human (or their privacy) is actually affected by the research.

danaris 5y ago

> An email asking an organization for answers to questions is human experimentation? Organizations are made up of humans. Human experimentation is very broadly defined, for IRB purposes. As I understand it, if you're going to be asking humans to interact with researchers, in any way, and gathering data based on those interactions, that's human subjects research, and requires reasonable scrutiny from the IRB. Source: I have worked fairly extensively with my own university's IRB, as I put together and maintain the website that they use to handle submissions.

pseudalopex 5y ago
It could be your university's definition. Princeton's definition doesn't include information about organizations.[1] It would include information about solo projects arguably. [1] https://researchdata.princeton.edu/research-lifecycle-guide/human-subjects https://researchdata.princeton.edu/research-lifecycle-guide/...
- jameshart 5y ago
  This seems pretty cut-and-dried to me. > A human subject means a living individual about whom an investigator (whether professional or student) who is conducting research: > (i) Obtains information or biospecimens through intervention or interaction with the individual, and uses, studies, or analyzes the information or biospecimens The information they were looking for is 'how does this person respond when they receive an email threatening legal action under CCPA?' A human subject means ... a living individual ... about whom an investigator... obtains information... through intervention or interaction... and studies... the information. That they mistakenly thought they were investigating how "an organization" responds when they receive an email is based on an erroneous assumption that an organization is itself an autonomous, sentient entity whose behavior can be studied independently of its human constituents.
  - pseudalopex 5y ago
    I think individuals in a research group in a department in a university in a city in a state in a republic know organizations contain individuals. Your interpretation would make most of the definition redundant. They could just say any individual an investigator interacts with. IRBs don't interpret it like that.

eli 5y ago

One of the requests landed on my desk to figure out how to process. I'm a human. Others have received them on personal domains where the "organization" is just them.

tqi 5y ago

To me yes, for the same reason pulling fire alarms at various company office buildings to see how they respond would be considered human experimentation.

tw04 5y ago

How would a website “respond” without human interaction? If all they were testing was whether or not a website had an automated response to emails with ccpa in the subject or body they could have included a disclaimer at the end of the email about what they were doing. This was clearly seeking a human response and is a human experiment.

RubberSoul 5y ago
That's not the definition of human subjects research. Not everything that involves a human responding to questions is human subjects research. A lot of comments in this thread are uninformed about the relevant definitions. You can think the study is poorly designed, unethical, etc. But if they're not obtaining data about a living individual, then it's not human subjects research.
- tw04 5y ago
  You appear to be the one uninformed about the definition of human subject research. >But if they're not obtaining data about a living individual, then it's not human subjects research. Sure, if you completely ignore the other half of the definition, per the NIH: https://grants.nih.gov/policy/humansubjects/research.htm https://grants.nih.gov/policy/humansubjects/research.htm > Obtains information or biospecimens through intervention or interaction with the individual, and uses, studies, or analyzes the information or biospecimens; They are absolutely collecting information to analyze by interacting with the individual.

ineedasername 5y ago

Any research that at all involves a human being-- performed by an institution governed by laws that mandate the existence of an IRB-- must be reviewed by their IRB. Keep in mind that IRB's govern research, not just experimentation. We don't even need to get into the weeds on this just being "answers to questions". All you need to do is look at the human impact: This research study has caused anxiety, time, and potentially money to many people being asked to unknowingly participate in the study. IRB's exist to evaluate-- among other things-- potential adverse impacts on people involved in a study. This has had an adverse impact and should not have been allowed through IRB review in this form.