4 ms·

It seems weird for the government to collect data useful for research, but then to gate access based on the viewpoints of potential users. This restriction does

It seems weird for the government to collect data useful for research, but then to gate access based on the viewpoints of potential users. This restriction doesn't support the search for truth. Whatever people think of Lasker (Cremieux) and his views, isn't data being available to all interested parties the best way to find the truth? The article mentions this towards the very end: Adam Candeub, the top lawyer at the Federal Communications Commission, wrote a law review article in 2024 criticizing the N.I.H.’s discouragement of stigmatizing research. He compared it to the persecution of Galileo. “A liberal society should support the search for truth,” Mr. Candeub wrote, “regardless of how uncomfortable and unsettling that truth turns out to be.”

cyanydeez 9mo ago
Paradox of intolerance answers your dilemma. Other answers: if placebos work, why would we restrict peoples choice and their dissemination? Because placebos rarely are innocent in often they become avoidant measures away from empirical science. Your view point is a local minimum in that you want to ignore societal impact. One of those impacts is using valid data to tout pseudoscientific methods. We know GIGO but the general populace does not You should use the samw logic ans find yourself arguing against vaccinea and herd immunity.
- rahimnathwani 9mo ago
  The paradox of intolerance suggests we should (if all else fails) suppress those whose seek to suppress others. How is that relevant? Is Lasker seeking to (let alone succeeding at) suppressing voices that disagree with his own? He might not engage with his critics (e.g. David Bessis) but AFAICT he's not doing anything to suppress them.
  - cyanydeez 9mo ago
    Surely this time race science wont be used to make social policies that directly boil down to racism by visual difference.
    - terminalshort 9mo ago
      So if I understand correctly, your argument is: 1. This research may prove that there are significant intelligence differences by race. 2. Public knowledge of this fact could lead to discrimination on an individual level based on group membership. 3. This is bad for society. 4. Therefore we should not conduct research down this path.
      - cyanydeez 9mo ago
        No its: 1. Race science has never demonstrated real impacts on Society. 2. Society funds research to find real impacts on Society. 3. Racists want to coninue to do #1 despite never demonstrating real impacts on Society. I mean, go on king, collect your own data on Phrenology, but don't get mad if the rest of us don't give you our head measurements.
rustyhancock 9mo ago
Scientists, are not quite like explorers, just venturing off in direction and see what they find. They have interests, that align with funding, which aligns with actionable data. And they follow them. So who would even do such research? The best you could find is some meaningless difference in mean scores that is likely swamped by environmental factors. And the fact that "race" is far fuzzier than our intuition leads us to think (it turns out we're very good at applying racial labels to people, that genetically are simply not so clear especially at the edges of categories).^* So it's hard to fund research with no purpose, that scientists aren't particularly interested in conducting. Instead [GWAS](https://en.wikipedia.org/wiki/Genome-wide_association_study https://en.wikipedia.org/wiki/Genome-wide_association_study) studies answer more useful questions that are actionable (you can do a genetic test and calculate a risk in principle). * I'll clarify this statement because it's a common misconception. There are clearly genetic differences between racial groups. But they are complex statsical genetics that are impossible to cleanly pin down without large levels of miscategorization. And GWAS studies are answering the question which genes are associated with cognition and disorder.
- terminalshort 9mo ago
  > So it's hard to fund research with no purpose, that scientists aren't particularly interested in conducting. But that's not what happened. They didn't just decline to fund such research. The NIH banned it on their data set even if you had your own funding. You don't explicitly ban things that people are not interested in doing. e.g. the NIH doesn't ban using the data set to perform research on astrology. If I want to do research on the difference between Libras and Scorpios and I come up with the money, the policy is "OK, you do you."
  - rustyhancock 9mo ago
    I read the NIH policy and it seems quite reasonable to me. The rule usually applied to datasets with broad consent is the surprise principle. Even if you have consent if the person is subsequently surprised by how it was used it's not informed consent. To put it simply, how do we get samples from marginalised groups if we plan to allow to use that data for them to be marginalised? If the NIH didn't actively oppose it how can they expect to get more participants ? But the article is also about groups engaging in academic dishonesty to bypass NIH policy. It really makes me question their motives and that they aren't simply scientists seeking truth.
tptacek 9mo ago
There's a lot of problems with this perspective, but a very simple pragmatic one is that these data sets depend on volunteer consent, which will be withheld if people believe their contributed data will be used this way. At the end of the day, human consent is the paramount concern.
- rahimnathwani 9mo ago
  I was with you until the last sentence. But I went to the ABCD Study web site, and read the article they link about ethical use of data (Responsible use of population neuroscience data: Towards standards of accountability and integrity). I didn't get the impression that consent (for this study or future ones) is the reason they gatekeep the data.
  - tptacek 9mo ago
    It doesn't really matter whether we agree with the principles in their ethics guide, because they form part of the commitment made with human subjects who participated. If the guidelines said that every scientist handling the data had to do so while wearing a rubber clown nose, that too would bind!
    - rahimnathwani 9mo ago
      Honestly, I haven't dug deep enough to know what commitment was made to the human subjects. The article I mentioned was written only recently (2024): https://pmc.ncbi.nlm.nih.gov/articles/PMC11959870/ https://pmc.ncbi.nlm.nih.gov/articles/PMC11959870/

cyanydeez 9mo ago

Paradox of intolerance answers your dilemma. Other answers: if placebos work, why would we restrict peoples choice and their dissemination? Because placebos rarely are innocent in often they become avoidant measures away from empirical science. Your view point is a local minimum in that you want to ignore societal impact. One of those impacts is using valid data to tout pseudoscientific methods. We know GIGO but the general populace does not You should use the samw logic ans find yourself arguing against vaccinea and herd immunity.

rahimnathwani 9mo ago
The paradox of intolerance suggests we should (if all else fails) suppress those whose seek to suppress others. How is that relevant? Is Lasker seeking to (let alone succeeding at) suppressing voices that disagree with his own? He might not engage with his critics (e.g. David Bessis) but AFAICT he's not doing anything to suppress them.
- cyanydeez 9mo ago
  Surely this time race science wont be used to make social policies that directly boil down to racism by visual difference.
  - terminalshort 9mo ago
    So if I understand correctly, your argument is: 1. This research may prove that there are significant intelligence differences by race. 2. Public knowledge of this fact could lead to discrimination on an individual level based on group membership. 3. This is bad for society. 4. Therefore we should not conduct research down this path.
    - cyanydeez 9mo ago
      No its: 1. Race science has never demonstrated real impacts on Society. 2. Society funds research to find real impacts on Society. 3. Racists want to coninue to do #1 despite never demonstrating real impacts on Society. I mean, go on king, collect your own data on Phrenology, but don't get mad if the rest of us don't give you our head measurements.

rustyhancock 9mo ago

Scientists, are not quite like explorers, just venturing off in direction and see what they find. They have interests, that align with funding, which aligns with actionable data. And they follow them. So who would even do such research? The best you could find is some meaningless difference in mean scores that is likely swamped by environmental factors. And the fact that "race" is far fuzzier than our intuition leads us to think (it turns out we're very good at applying racial labels to people, that genetically are simply not so clear especially at the edges of categories).^* So it's hard to fund research with no purpose, that scientists aren't particularly interested in conducting. Instead [GWAS](https://en.wikipedia.org/wiki/Genome-wide_association_study https://en.wikipedia.org/wiki/Genome-wide_association_study) studies answer more useful questions that are actionable (you can do a genetic test and calculate a risk in principle). * I'll clarify this statement because it's a common misconception. There are clearly genetic differences between racial groups. But they are complex statsical genetics that are impossible to cleanly pin down without large levels of miscategorization. And GWAS studies are answering the question which genes are associated with cognition and disorder.

terminalshort 9mo ago
> So it's hard to fund research with no purpose, that scientists aren't particularly interested in conducting. But that's not what happened. They didn't just decline to fund such research. The NIH banned it on their data set even if you had your own funding. You don't explicitly ban things that people are not interested in doing. e.g. the NIH doesn't ban using the data set to perform research on astrology. If I want to do research on the difference between Libras and Scorpios and I come up with the money, the policy is "OK, you do you."
- rustyhancock 9mo ago
  I read the NIH policy and it seems quite reasonable to me. The rule usually applied to datasets with broad consent is the surprise principle. Even if you have consent if the person is subsequently surprised by how it was used it's not informed consent. To put it simply, how do we get samples from marginalised groups if we plan to allow to use that data for them to be marginalised? If the NIH didn't actively oppose it how can they expect to get more participants ? But the article is also about groups engaging in academic dishonesty to bypass NIH policy. It really makes me question their motives and that they aren't simply scientists seeking truth.

tptacek 9mo ago

There's a lot of problems with this perspective, but a very simple pragmatic one is that these data sets depend on volunteer consent, which will be withheld if people believe their contributed data will be used this way. At the end of the day, human consent is the paramount concern.

rahimnathwani 9mo ago
I was with you until the last sentence. But I went to the ABCD Study web site, and read the article they link about ethical use of data (Responsible use of population neuroscience data: Towards standards of accountability and integrity). I didn't get the impression that consent (for this study or future ones) is the reason they gatekeep the data.
- tptacek 9mo ago
  It doesn't really matter whether we agree with the principles in their ethics guide, because they form part of the commitment made with human subjects who participated. If the guidelines said that every scientist handling the data had to do so while wearing a rubber clown nose, that too would bind!
  - rahimnathwani 9mo ago
    Honestly, I haven't dug deep enough to know what commitment was made to the human subjects. The article I mentioned was written only recently (2024): https://pmc.ncbi.nlm.nih.gov/articles/PMC11959870/ https://pmc.ncbi.nlm.nih.gov/articles/PMC11959870/