Genetic data from over 20k U.S. children misused for 'race science'

30 pointsposted 7 hours ago
by DustinEchoes

56 Comments

rahimnathwani

6 hours ago

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.”

rustyhancock

4 hours 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) 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.

TMWNN

12 minutes ago

> 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.

Yes, I too find it easy to avoid doing research when I assume what that research is going to find out ahead of the time.

terminalshort

4 hours 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

4 hours 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.

terminalshort

3 hours ago

I was responding to the statement from the article that it had explicitly banned anything to do with race, ancestry, or ethnicity. I have not read the full policy.

> 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?

You said in your previous comment above that these categories aren't useful anyway, which brings up some questions:

1. If that is the NIH's opinion, then why did they label the data with those categories?

2. If these categories are actually not useful, then why should I care if the dataset isn't balanced between members of those categories?

> 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.

To the contrary, I consider any such restriction on the topic of research to be fundamentally unscientific and I mistrust any scientist who feels an ethical obligation to comply with such political censorship.

rustyhancock

2 hours ago

It's not restricted. NIH won't allow you to use the datasets they control for it. It is practically and pragmatically reasonable for them to do that. It's also ethically sound to not let the data subjects data be used for something they wouldn't want as the data controller.

If a scientist wants to do the research then they can pursue it and find a journal to publish it in. The reputable journals are unlikely to find it of interest unless it was a huge effect size. But we know any effect size must be tiny hence the need for a huge dataset.

They'd have to take samples and basically tell the person the intension was to check if some races were genetically inferior let's see how well they do with recruitment. I wouldn't give a sample.

Or just do a GWAS study and then develop metrics for estimating risk for individuals which can make use of ethnicity.

cyanydeez

5 hours 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

5 hours 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

5 hours ago

Surely this time race science wont be used to make social policies that directly boil down to racism by visual difference.

terminalshort

4 hours 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.

hubber

6 hours ago

If you think about it for just a moment, it would actually be extraordinary for the races to have diverged in so many easily observable and visible ways, yet somehow miraculously demonstrate absolutely no aggregate differences in any measurable way in any psychological, social, or intellectual attributes. It's so absurdly unlikely that it ought to require a mountain of evidence (and one hell of a theory explaining it) to not be laughed out of the conversation.

justin66

6 hours ago

Cringe:

In a statement, Lyric Jorgenson, associate director of science policy at the N.I.H., said the agency had taken steps to protect the ABCD Study. It has introduced a new online portal requiring users to complete training on responsible data use and to “pass a knowledge test prior to accessing the data.”

They have an online training and everything!

rustyhancock

4 hours ago

The simple answer is that Race science is pointless because race is not a clean objective concept. We are fooled by our remarkable capability to assign racial labels into thinking it must be simple to cleanly deduce race from a generic test.

But it's obvious that races do have genetic differences.

The way scientists resolve this conflict is to bypass race entirely. And focus on genetics.

Genome wide association studies (https://en.wikipedia.org/wiki/Genome-wide_association_study) is the answer.

You create statistical models from large caches of genetic data and find association's. Then you can provide a risk score for an individual and if you want estimates based on ethnicity.

It's the genetic test that makes it useful like Duffy Null testing before starting people or African descent on Clozapine, HLA-B*1502 testing before starting Asians on Carbamazpine.

Where risks are lower you can do crude heuristics like calcium channel blockers before ace inhibitors for black people.

But just having people check a box in a questionnaire and doing their IQ is just pointless scientifically.

TMWNN

13 minutes ago

There was a 2018 op-ed in the Times <https://www.nytimes.com/2018/03/23/opinion/sunday/genetics-r...> by a geneticist, warning society that at that moment, and increasingly in the next few years, his field would find things about humans that people wouldn't like to hear. Things like, racial differences are real, intelligence is mostly inherited, etc. (Bonus: Men and women are different, and there are only two sexes.)

The tone was not "these are breakthroughs to look forward to"; rather, "things are coming that people we disagree with are going to exploit, but they are nonetheless real". Another interpretation would be "please don't yell at us for discovering these things".

DeathArrow

5 hours ago

The White House already committed to open-sourcing all such datasets:

"(a) all federally funded health research should empower Americans through transparency and open-source data, and should avoid or eliminate conflicts of interest that skew outcomes and perpetuate distrust;"

dismalaf

5 hours ago

> Jordan Lasker, who often writes about race and intelligence under the name Crémieux

It's funny because this guy is center-left, he just happens to actually be intellectually honest.

Anyhow, either we do science or we just admit that we don't like the social implications of the evidence. Trying to hide data and gaslight the public isn't science.

bigbadfeline

3 hours ago

> Anyhow, either we do science or we just admit that we don't like the social implications of the evidence.

Right, right... Rehabilitation of eugenics in 3, 2, 1... Nothing new here, Hitler did follow the "social implications of the evidence"... after all, a whole bunch of esteemed scientists and Nobel laureates hailed eugenics as the best thing after sliced white bread, Hitler did quite a bit of slicing of that material himself. No, he didn't invent his theory, he simply followed accepted science.

> Trying to hide data and gaslight the public isn't science.

There isn't much that resembles science in social academia, data isn't science and the prediction of the so-called "social" sciences have been disastrously wrong all along.

Data isn't evidence ether - you have to have a theory within a science with a sound methodological foundation before you can treat data as evidence. We don't have that now and we've never had it, the few meager attempts were politicized and bastardized in their infancy.

> It's funny because this guy is center-left, he just happens to actually be intellectually honest.

Center-left? Like all Democrats in Congress who joined the fifty-odd Republicans to vote for letting the government remotely mess with your car while you drive?

At the time of a real shooting war in the streets in Minneapolis they seized the opportunity to put some more shackles around public's ankles.

There isn't left, right or center in US party politics - only Orwellian-left theater vs Orwellian-right theater in service of forces who view the public as sheep to be sheared.

user

2 hours ago

[deleted]

terminalshort

3 hours ago

How, exactly, was Hitler following the science? Can you point to the specific scientific research that is to blame?

bigbadfeline

2 hours ago

It's in my prior comment: EUGENICS. Research it, it's all out there.

Eugenics was flourishing during Hitler's time, he loved it, it was the foundation and the excuse for his believes.

terminalshort

2 hours ago

Yes, I know you mean eugenics. But that fundamentally isn't science. It's government policy. You are blaming this on science, so please point me to the science that you blame this on.

bigbadfeline

2 hours ago

Eugenics is the name of a scientific theory, part of "scientific racism", first formulated by Francis Galton, a half-cousin of Darwin. See 1865 article "Hereditary Talent and Character", and 1869 book "Hereditary Genius".

Make sure you research on the science and history of eugenics instead of seeking support for your prejudice about it. Of course, it's a shameful example of accepted but disastrous "science", which social scientists, media and politicians don't like to talk about. They always have many theories, to provide room for plausible deniability, but eugenics was accepted no less than any other social theory at the time.

That theory was significantly expanded later and used by politicians in the US to justify forced sterilization of Irish and black women (not sure about others - DO research"),

It was also used and adapted by Hitler to justify his racial believes and policies.

user

an hour ago

[deleted]

terminalshort

an hour ago

That's not science. The actual study of genetic inheritance is science. Eugenics is just saying "hey, that means we can breed humans like any other animal." And forced sterilization is an implementation detail that isn't even inherent in the concept itself. Blaming this on science is like blaming a shooting on science because ballistics, chemistry, and metallurgy are sciences.

dismalaf

2 hours ago

No one considers eugenics science. Just because some guy in the 1800s said it was science doesn't make it so. Next you'll say Scientology is science... Or astrology, or whatever. We have a pretty defined view of what science is today and any random person calling something science doesn't discredit actual science.

bigbadfeline

an hour ago

> No one considers eugenics science.

No one considers eugenics science NOW, but it was considered science back then and we're commenting on modern scientific studies that would be adopted wholesale by the eugenics scientists of the time.

It doesn't matter what you call it, if it walks like eugenics, if talks like eugenics it is eugenics even if that word was thrown out as politically inconvenient. Go back to my first comment in this thread and understand it in this light.

> Just because some guy in the 1800s said it was science doesn't make it so.

It continued well into 1900's up until WW2 and it was a social theory as scientific as any other at the time, otherwise it would not be used for justification of government policies.

user

7 hours ago

[deleted]

terminalshort

6 hours ago

I can't take any of this seriously so long as any research on race and intelligence continues to be banned as heresy rather than being discussed scientifically.

bryanlarsen

6 hours ago

Race is not a genetic concept, it's social.

Or more accurately, if it were genetic the races would look very different.

The genetic diversity of "black" alone exceeds the rest of the world combined.

So you have two choices:

1. Everybody is black.

2. The other races roughly stand, but there are dozens of different black races.

Or you can be more accurate and say race is cultural.

terminalshort

6 hours ago

OK, then let's do it right. But I think you know that isn't really the issue here. Nobody is putting out studies on correctly defined races by genetic groupings and intelligence either because the topic is still considered heresy. Your point that the commonly used definition of race is inaccurate is simply deflecting from this fact.

yed

5 hours ago

The point is there is no such thing as a “correct” grouping. The choice of what constitutes a group is completely subjective, it all depends on how far you choose to zoom in or out.

jyscao

5 hours ago

Genetic diversity within continental races, including that of Sub-Saharan Africans, are mostly a consequence of genetic drift.

While genetic diversity between races are from selection. Thus the inter-racial genetic differences are more likely to manifest in trait differences that humans find more meaningful (which I use purely in a descriptive manner, not prescriptive), such as physiological (medical, metabolic), psychological & behavioral (personality), cognitive (intelligence), and of course physical (appearance, athletic).

The intra-racial differences that arise from genetic drift result in things that are still tangible genetic differences, e.g. ABO blood group frequencies, but don't map well onto characteristics that human societies place emphasis on as much.

And to address your point that:

>The genetic diversity of "black" alone exceeds the rest of the world combined.

This is because the level of genetic diversity as influenced by genetic drift is primarily a function of population size, and Africa being the origin of the Homo sapien species, and probably the Homo genus as a whole, has always had the highest level of effective population size. Thus genetic drift in Africans is least likely to be able to cause allele fixation on particular genes, and so such diversity is better preserved. But as already mentioned, these forms of genetic diversity is less likely to impact the observed traits that most humans, both academics/social scientists and your average joe, find "meaningful".

inshard

5 hours ago

Many sub-Saharan African populations, such as Bantu-speaking West Africans, exhibit relatively lower genetic diversity compared to the Khoisan people, who typically have light brown skin. The Khoisan lineages diverged from those leading to Bantu and other sub-Saharan groups around 100,000–150,000 years ago, making them one of the most ancient human ancestries.

terminalshort

5 hours ago

All are equally ancient. They are 100-150K years from the common ancestor and so are all others descended from that lineage.

DeathArrow

5 hours ago

>Race is not a genetic concept, it's social.

Is this also true for other mammals such as cats, dogs, pigs, cows, horses?

amarcheschi

6 hours ago

The person in question in the article is kirkegaard, you should not take seriously what he does anyway

https://en.wikipedia.org/wiki/Human_Diversity_Foundation

edit since i was feeling really daring today i found an old archived page of a wiki holding a lot of interesting thoughts from him, such as eugenics to prevent the loss of western civilization, and other points that at this point you should imagine. link: https://web.archive.org/web/20250416005529/https:/rationalwi...

terminalshort

6 hours ago

This criticism seems to mostly be that he is associated with bad people who say naughty things. Maybe he is a bad scientist, but where are all the well designed scientific studies that show his conclusions are wrong? That's what I care about, but they don't exist because you would never get funding and even to propose running such a study would be career suicide.

conception

6 hours ago

For one the idea of race is a social, not scientific, construct. It doesn’t mean anything scientifically.

terminalshort

6 hours ago

You are a perfect example of what I am talking about. That is an obvious lie. Of course it means something scientifically because it refers to a genetic grouping. e.g. black people are much more likely to have the genetic disease sickle cell anemia. Nobody seems to have much of a problem with that statement but if it were a gene related to intelligence you people would lose your minds.

If it isn't a scientifically valid concept, then why did the NIH label the genetic data by race?

dragonwriter

5 hours ago

Races are not genetic groupings, they are social constructs whose boundaries evolve over time, which is particularly clear when they are formalized in a way which resista change and that formalization drifts increasingly far from the current common usage, such as the way the White racial category in common usage in America currently roughly corresponds to the the subset of the White racial category that excludes the Hispanic ethnicity in the US Census categorization.

The construction of race at any given time and place will tend to have non-zero correlation with genetic frequencies, in part by chance and in part because it is usually largely (but not entirely) drivn by appearance which is to some degree associated with some aspects of underlying genetics.

> e.g. black people are much more likely to have the genetic disease sickle cell anemia.

People with ancestry in sub-Saharan Africa (and within that, even more West Africa), India, the Middle East, and Mediterranean are more likely to have the gene that provides malaria resistance with one copy and sickle cell disease with two than other populations.

While the highest incidence group is also commonly “Black” in most constructions of race, a lot of the American perception of it as a nearly exclusively Black disease is because the population perceived as Black in the US is heavily drawn from West Africa, and the US population also underrepresents other populations in which it is more common than average AND does not include, and may not construct as Black, populations constructed as Black elsewhere in the world where it is not common.

terminalshort

5 hours ago

You are 100% correct, but also 100% missing the point. When I say white people are more likely to carry the gene for cystic fibrosis, or black people are more likely to carry genetic risk factors for kidney disease, nobody will reply with a long winded explanation claiming that statement is invalid because "white" and "black" are not scientifically valid because... Comments like yours appear only when the topic of intelligence comes up, so I conclude that the real problem you have with this is the subject of intelligence, and not the categories.

And when the science on race and intelligence came out, the response of the scientific community was not "your categories are bad, and here is my study on intelligence that actually uses scientifically valid genetic groupings." It was "any further science on this subject will not be funded and if you express disagreement it will risk your career."

conception

an hour ago

You mean people are more sensitive on sensitive topics? What? The topic used to justify horrible atrocities over time has a higher bar of scrutiny? What? Why’s that?

And are you sure there aren’t studies on genetic groupings and intelligence? That seems quite a claim.

just_once

5 hours ago

Would you feel better if people said "people of African descent are much more likely to have a genetic disease sickle cell anemia"?

amanaplanacanal

5 hours ago

The problem here is that "black" can mean anybody with dark skin from anywhere in the world.

The sickle cell stuff is likely related to the fact that most "black" people in the US are descended from slaves that pretty much all came from the same small region in West Africa.

terminalshort

5 hours ago

My point here is that this problem only seems to be brought up when the research has to do with intelligence. If you talk about genetic differences between "black," "white," or any other racial grouping on any other metric nobody ever brings it up as in my example above. So, while I acknowledge the fundamental weaknesses of the category, I have to conclude that the real objection here isn't the categories, but the topic of the research.

just_once

4 hours ago

Most of the examples that you've used gain very little from added specificity. It's essentially linguistic laziness. That linguistic laziness is not identically consequential in all contexts.

blargthorwars

6 hours ago

Some medicines work better or worse depending on race. Based on the scientific methodology, your statement is incorrect.

762236

6 hours ago

Totally agree.

rf15

6 hours ago

Yeah I agree, considering how much my black kid is beating all the other white kids intellectually. Good to know you know your place. /s