16 ms·

NIH blocks access to genetics database if research enters “forbidden” territory

184 points by Bostonian 4y ago

Manuel_D 4y ago
When I was in university, academics of every discipline made it clear to me: controversial research does not get published. Donors have huge sway over the university, and if the university fears controversial research will chill donors they will intervene. This is on top of other mechanisms like foreign censors (one academic had a colleague who's book was banned in much of South Asia), and good o'l fashioned twitter mobs. Tenure, despite it's elitism and problems of fostering a gerontocracy, is one of the few mechanisms that helps people explore controversial topics. But even then, finding can be cut and labs shut down even if the tenured professor is not fired.
narrator 4y ago
- karpierz 4y ago
  Your comment was flagged because you're arguing against a strawman of liberal ideology. If someone holds your views, then you don't need to convince them. If someone doesn't hold your views, then you haven't given them any more information. In either case, it doesn't move the conversation forward. All it can do is provoke a pointless argument. Hence, flagged.
  - Vt71fcAqt7 4y ago
    Is it a strawman if the editorial referenced by the article basically holds GP's point (as I remember it at least, I can't see it now) >In creating this guidance, we took as a starting point the first article of the Universal Declaration of Human Rights — humans are “free and equal in dignity and rights”[0] This document was written before the discovery of the double helix. How can we take it as a starting point? I think the flagged post was perhaps flame-baity, but I don't think the point you're making is so cut and dry. As I remember it, GP's argument was that liberal ideology holds the equalness of all people as a fundamental truth rather than a result of inquiry. That seems to be what is happening in reputable scientific jounals. [0] https://www.nature.com/articles/s41562-022-01443-2 https://www.nature.com/articles/s41562-022-01443-2
    - narrator 4y ago
      Let's say a researcher wanted to do a study to find out what gene polymorphisms are associated with better performance on standardized tests. Nope, can't do it. Might reveal that some people, or God forbid kinds of people, are genetically less intelligent than others and that is a forbidden conclusion. Heck, this post might even get flagged because it raises the possibility that this proposition could be true. Meanwhile, in other countries, they are offering gene modifications to insert these genes discovered by researchers doing this forbidden research into consenting adults. Anyone in the west who would want to confirm their research would get locked out of the database.
verisimilitudes 4y ago
- pseudo0 4y ago
  I mean, we live in a society where big tech firms hire "machine learning safety" experts to prevent their algorithms from noticing the wrong patterns.
api 4y ago
I hate this stuff, but I also understand it. The human race has continuously proven itself too immature to deal rationally with the true nature of human biological diversity. Give us any axis on which we can sort ourselves and pretty soon we're using it to play ape status games or worse. We are not truly intelligent beings yet, just a clever neocortex grafted clumsily onto an animal. That animal happens to have a lot of instincts around tribal in-group/out-group behavior that immediately kick in when differences are discussed. My personal opinion is that things like genetic differences in ability or gender developmental stuff should be studied but it should be discussed in the most obtuse and utterly alien academic jargon possible for an effect bordering on encryption. It should be impossible to quote such research in any way that would be comprehensible to someone outside the field, making it impossible to cite it directly in support of popular political arguments. Or maybe gate it off entirely. Maybe we should not publish openly about human genetic or gender differences for the same reason we do not publish precise schematics for atomic weapons or detailed how-to documents on how to create a doomsday plague with a mail order CRISPR kit. That reason being: some of us will use such knowledge to kill each other. What I really hate is that humanity can't handle understanding itself.
- denkmoon 4y ago
  Kind of defeats the purpose of studying it doesn't it? Presumably we do research to inform decision, usually about social policy. Social policy is, ostensibly, dictated by voters in democratic societies. Might as well not do the research, and I don't mean that cynically. It might genuinely be for the best.
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- Manuel_D 4y ago
  This doesn't do anything to dissuade people from belief in racist ideas of genetic intelligence, or whatever else. Why are scientists gating off research and data, if they're so confident that the problematic conclusions are incorrect? Because the problematic conclusions are correct, the racist will say. Scientists wouldn't lock away data that disproved racist theories of intelligence, would they? It's a fallacious argument, but one that will probably work on a lot of people.
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smrtinsert 4y ago
Thus ends my research into why genocide is usually committed by high achievers. /s
dekhn 4y ago
I, too, have applied for, and then had revoked, access to dbGaP. In my case, I worked for a corporation that wanted to simplify the hosting of this data to appropriately credentialed researchers with the goal of making genomics look more like modern bigtech data processing. We made friends with the various program managers, did all the necessary due diligence, applied, got approved, downloading hundreds of terabytes of data, and then received a stern note from the leadership at NIH that we had to delete everything. Apparently, some Very Important People at NCBI didn't like Google and really didn't like the idea that we'd have a copy of all this data, even though the intent (I can say authoritatively since I was the founder of the project) was to accelerate scientific research. It's now hosted on AWS as a public/private dataset. I try to avoid human genomics or really any controlled-access dataset now. The total value in the data is much smaller than generally claimed, and entrenched interests go out of their way to gatekeep and sort of maintain an "artisanal, bespoke" approach to data processing. Now, if you want to use this data to make strong conclusions about the relationship between genotypes and human intelligence: best of luck to you, as you'll be grabbing the electrified third rail of American politics and science. Nearly every foray into this area generates controversy, and even intelligent, good-faith researchers end up in a trap of "appearing to be racist, or sexist". With career ending consequences. I study tardigrades instead now.
- Pulcinella 4y ago
  This actually makes me feel more confident in the system. I as an average citizen, would prefer if an advertising company did not have access to a giant database of genetic information. (I also don’t want Bezos to have access either, for what it’s worth).
  - heavyset_go 4y ago
    I agree with this. Google doesn't need access to terabytes of genetic datasets and I'm glad that the NIH asked them to delete what they had.
    - shaboinkin 4y ago
      Imagine finding a correlation between specific genes and specific spending habits. Have Alphabet spin up a company that does what 23andMe does, offer a cooler, trendier version of the competition to entice adoption, then in the fine print say they’ll mine the data they find in your genes. Those resulting ads are gonna get ugly, quick. Edit: Although, in the context of medicine, it would be pretty cool if you can find trends in medicinal health that tend to be common with individuals like yourself, and give you warnings should conditions are more likely to arise. I imagine that would involve adding in a different dataset to compliment understanding characteristics of your DNA
Vt71fcAqt7 4y ago
>Note that none of the studies I am referring to include inquiries into race or sex differences. Apparently, NIH is clamping down on a broad range of attempts to explore the relationship between genetics and intelligence. For those who don't click the link. This is getting to really dangerous territory. Political correctness wants to remove genetics altogether from the study of the human condition. Blank-slate cultists are scared of what research will find.
- stjohnswarts 4y ago
  Sorry I can understand why they want to stop this. It would likely be used by MAGA and similar organizations to justify a lot of what I see as coming down the road from that particular political faction to justify policies aimed towards minorities and women.
  - tomjen3 4y ago
    At that point they are no longer get to call themselves scientists. A scientist use the scientific method to get at truth. They don't get to hold back research because it might help a political course they don't like.
    - socialismisok 4y ago
      It's willfully naive to believe that a bad actor will feel any impact from being called "not a scientist". Plenty of people will call a eugenicist a scientist because it suits their narrative.
  - tdeck 4y ago
    - remarkEon 4y ago
      I’m not sure what point you’re making. Studying human genetics is naziism?
norwalkbear 4y ago
Whoa, explains why all the cognitive boosters are coming from Asia these days. I know many many people dosing on custom peptides to keep up with the grind in game development these days. If I had to guess,I think the cats out of the bag already, and we are behind.
- citboin 4y ago
  Can you name one of these “ custom peptides “ or a source for one? This is interesting.
  - norwalkbear 4y ago
    P21,p22, semax variants are the only ones I've heard.
    - bergenty 4y ago
      The first two are just “apoptosis inhibitors”. Perfect if you want to grow your own tumors and cancers.
      - JPLeRouzic 4y ago
        Are you sure you are talking of the P21 peptide (Ciliary neurotrophic factor), and not of Ras GTPase or p21 as a cyclin-dependent kinase inhibitor?
      - norwalkbear 4y ago
        Yea these aren't related to any genes, there are just custom names for a peptide booster series.
  - norwalkbear 4y ago
    If you need help googling for more look up where Americans expats go in southeast Asia and south America.
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rafaelero 4y ago
All these scientific datasets gathered with taxpayers money should be made public. If people end up discovering "dangerous" patterns then well... so it's scientific progress. Sometimes they don't conform to our preferred bias.
- pseudo0 4y ago
  Could an entity with sufficient resources just FOIA the data? It does not appear to fall into any of the FOIA exemptions or exclusions. The closest would be #6, which protects information that would constitute a clearly unwarranted invasion of personal privacy. But since researchers are accessing this data, shouldn't it already be very carefully anonymized? https://www.hhs.gov/foia/exemptions-and-exclusions/index.html https://www.hhs.gov/foia/exemptions-and-exclusions/index.htm...
- halostatue 4y ago
  The problem is that while the genomic data is fine, the attached metadata regarding "race", "intelligence", etc. is of questionable and deeply biased origin. GIGO. By providing blocks on certain types of research which are known to be flawed because they try to make the garbage metadata meaningful…some of the worst of the bad science performed over the last 200 years gets eliminated. Really, some of the ideas that exist that form the basis of IQ &c. aren’t much better than phrenology.
  - rafaelero 4y ago
    The quality of the data is important in every research field and it is a factor widely and openly discussed whenever a new paper is out. We can't even start having a conversation over it if such datasets are not easily available.
  - Rebelgecko 4y ago
    What makes the data questionable/biased?
  - LawTalkingGuy 4y ago
    There are many helpful questions that can be answered with imperfect data. What if you wanted to search populations with a high concentration of strongly retarded children to look for epidemics of birth defects, and then compare areas by race to see if it looked like there is any unexpected bias? A research block would stop this and other useful question from being answered. The data would easily suffice, whatever its defects, because you wouldn't need high-resolution IQ measurements, only enough to detect severe defects and you wouldn't need genetically-accurate racial identification, only a rough guess because that's what visible minority means. But because a bunch of pearl-clutchers are afraid of MAGAites the researcher trying to find and fix other cities like Flint Michigan would instead of demonized, denied tenure, and hounded out of academia.
tksiden 4y ago
Is this going to be like the stem cell research ban? America falls behind Europe and others?
- bergenty 4y ago
  The stem cell research ban was to assuage religious people. This I understand, the last thing I want is some insurance company saying I need to pay 10x because of my genes.
  - rafaelero 4y ago
    > the last thing I want is some insurance company saying I need to pay 10x because of my genes. On average you would expect to pay the same of what you are paying today. But it would give discount to people with longevity genes and makes the bills more expensive to disease-prone individuals.
    - socialismisok 4y ago
      Yeah. That's fuuuuuuuuuuuucked up. "Sorry you were born more likely to suffer disease, which is unfortunately going to make your life much harder. We'd like to double down by making you pay more money too. Hope you are comfortable being both less wealthy and less healthy!"
- iqgnotmics 4y ago
  I doubt it will come from Europe; genetic testing (like 23andme and parental tests) is literally banned in France because "genes don't exist/don't matter" and "we're all French". This research will come from China, which has taboos about certain political topics, but not race.
LinkLink 4y ago
Good. If there's anyone out there anyone who thinks there isn't an entity that will happily take databases of genetic information and use it to develop the most horrifyingly efficient genome specific advertising and hiring selection algorithms i've got some snake oil to sell you (it has peptides).
- Vt71fcAqt7 4y ago
  "Send us a saliva sample for 2 months free + one month of your choice streaming service on us!"
tkk23 4y ago
What is preventing one of the genetic sequencing services from making the connections? There must be enough commercial databases available to allow them to "add data about health, education, occupation, and income". Sooner or later, the data will be available. Where will it end? Will "stupid" people stop having children or will they choose intelligent donors until genetic engineering is possible?
ckemere 4y ago
I think what the author sneakily avoids is that what is being withheld is socio-behavioral measurements made along with the genetic samples. And the reason is that people who didn't actually gather data themselves are ignorant of the shortcomings of the measurements. This includes both "intelligence" testing and measuring/assigning "race". As the parent of a phenotypically "white" child and "black" child (who share both parents, to be clear) this later point is really relevant. It's possible that people can study these things carefully, but an obvious precursor is understanding that if someone doubts their dataset is appropriate for something, they probably have good reasons. Bias in deep learning models is a classic case of this....
- jacobriis 4y ago
  "If someone doubts their dataset is appropriate for something, they probably have good reasons." The reason they "doubt" their dataset is appropriate is they don't like the conclusion.
  - DoctorOW 4y ago
    It's understandable to me that the scientific would object to conclusions drawn from flawed datasets and intentionally poor methodology.
    - deleted 4y ago
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  - bergenty 4y ago
    I doubt they’ve even made conclusions, they don’t want people to p hack their way to nefarious conclusions.
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MichaelCollins 4y ago
To those saying the data should be open in the pursuit of truth, damn the consequences, please consider this scenario: Researchers come to your community and tell everybody they're studying genetic diseases. Their research will provide comfort to those who suffer. Sounds great, so you all hand over your DNA/ec to these researchers. Then a few years later, using that same data, researchers publish studies saying that your people are genetically stupid. That you're a bunch of subhumans generally unqualified for anything but menial labor. How does that make you feel the next time researchers come around asking for more data? You'll tell them to fuck off, that's what you'd do. Why would you consent to research that demeans and degrades you and your people? And because your community now has an adversarial relationship with scientific research, that initial promise of research helping people goes out the window too. If using this sort of data as a weapon against others is permitted, you harm not only the people you collected the data from, but your own ability to collect data from them again in the future.
- rafaelero 4y ago
  > That you're a bunch of subhumans generally unqualified for anything but menial labor That seems more like a moral conclusion than a scientific one. Sure, maybe scientific evidence can fuel discrimination, but at least it gives us something over which we can have an intelligent conversation. It bounds a discussion that nowadays encounters no resistance or counterarguments in certain groups. And there will always be a group of people genetically smarter, more athletic, good looking than yours. So it doesn't take much thinking to reach the conclusion that we are all in this together.
  - MichaelCollins 4y ago
    > That seems more like a moral conclusion than a scientific one. That distinction doesn't change anything. Even if you can keep that sort of language out of even the preprints, you'll have politicians citing the studies and making those statements themselves. It boils down to this: if you tell people you're collecting data to help them, then you can't allow that data to harm them.
inglor_cz 4y ago
There is a depressing # of voices here in this discussion which argue that ignorance is better than search for, however imperfect and fractional, knowledge, because humans (always some other humans) aren't capable of handling the truth. I will try to argue against them from a pragmatic point of view. The US sure is the top dog in scientific research, but far from the only dog. New competition has arisen, mostly Asian countries that do not care too much about historical Western traumas and sensibilities. The US is no more capable of blocking certain research worldwide that the Pope was, back in the Early Modern Era. By blocking intelligence research in the US, the US is basically ceding the ground to those competing countries on ideological grounds. As a result, they will get ahead and possibly discover new facts. (At this point, too many smart readers will wave the suggestion away with a bland "Intelligence is too complicated to be ever really understood." Sorry, I don't believe that. Intelligence is surely complicated, but so was atom splitting. It would be strange if there were never any results in the field, regardless of work spent.) Which means that a generation or two down the road, strategic adversaries may have tech to alter intelligence and other mental traits, because they will know what to edit and how. Perhaps not that much, but who knows how genetic and epigenetic manipulation in human beings is going to look like in 2070. Such an ability may prove even more world-changing than the atomic bomb, and the US is shooting itself in the foot by making sure that it won't be able to compete on the field early.
- remarkEon 4y ago
  Exactly this. What results from this field has the potential to be downright terrifying and dangerous on so many different dimensions. Which is exactly why it should be studied, especially in a society where we still ostensibly have some semblance of respect for the individual.
  - thebradbain 4y ago
    The Cold War didn’t become a Nuclear War because both powers realized in some capacity that an arms race spurred by this very assumption that the other is creating ever more advanced technology which could threaten one’s power would ultimately just result in each country annihilating the other in the name of self defense/preserving power/stability/“peace”. Who benefits from those “advances” in technology in that case? To argue that dangerous/unethical/X research must be done just because a potential adversary is also doing that research is what armed the world with the nuclear option in the first place. Sure, nuclear weapons would likely have been theoretically discovered anyways, but did they need to be actually built? Did we need to execute on actually building and using nuclear weapons to understand practical use cases for nuclear energy? Because I am certain that powers today in an arms race with each other could and would, by this logic, discover and unleash entirely new man-made horrors upon this world that make nuclear weapons look elementary, if this is the path we’re going to go down. Just because some people choose to study eugenics does not mean we all have to (or should).
seydor 4y ago
There are ways to fight back against such abusers: - Announce that you re moving your research to china - Claim that the chinese will get an advantage on this - Claim a priori that your research demonstrates how genetics don't matter , even if it does unfortunately, research in europe / japan and elsewhere follows american trends to the T, so there is not even the probability of having some competition here
iqgnotmics 4y ago
pfisherman 4y ago
I see a lot of controversial comments about race, etc. Well the big joke is is that there are huge ancestry biases in genetic databases. They are not representative of much of humanity. The other thing I think people here are not considering is the issue of informed consent on the part of the patient. When patients agree to give biological samples, they generally do so with the understanding that that they will be used for a particular purpose or within some scope. It is unethical for researchers to use the bio samples or data outside the bounds of patient consent because it is disrespectful and violates their autonomy. For example, if I tell you that I am going to use your DNA to cure cancer, and then turn around and give it to someone who wants to develop a bio weapon (or targeted ads), that is not cool. You would probably feel duped, and never would have agreed had you known it could be used for such purposes. This is kind of an extreme example, but hopefully it makes the issue clear. My guess is that this is less about “censorship” and more about legal issues around patient consent.
KKKKkkkk1 4y ago
Remember the uproar when the George W. Bush admin banned research in stem cells on religious grounds? All the uproar from the left and the pledges of enlightened EU countries to step in to support the freedom of scientific inquiry? Whatever happened to all these folks?
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elizabethes 4y ago
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qikInNdOutReply 4y ago
Ah, the freedom of research vs what humanity made of it debate. One can detect what this debate is about, in the direction its proponents want to take the results. There is no search for a "cure" no search for a way to help, instead its almost always a search for a "anti-social" behaviour justification. I want to cut responsibilties for my fellow men, want to cut taxes and justify atrocities, in war and peace, looking scientific doing it. One can predict the "research" to be showing up usually in booming and busting places, were good-times spending has to be cut back and crisis looms. Example is the museums build for https://en.wikipedia.org/wiki/Peking_Man https://en.wikipedia.org/wiki/Peking_Man which currently has a sizeable pseudo science following, explaining any economic superiority with a "race" superiority and definatly do not look like the "Aryan" Uebermensch in old nazi germany museums. https://www.youtube.com/watch?v=TO7dvuDslJk https://www.youtube.com/watch?v=TO7dvuDslJk Want some mental model with some actual explenation power? Human groups cycle through resource crisis since the dawn of time. And we adapted natural instinctive responses to that. A exponential curve cycling endlessly between TheHornOfPlenty > PreCrisis > War > Reconstitution. And evolution, the blind, mindless industrious process it is, "optimizes" to any constant environment, even a cycling one. So there you have them, the whole zoo of adaptions and even "non-intelligence" which all have a place. To not party hard and produce labour intensive offspring en mass is "intelligent" if ones instinct consider the optimization for the loop holy. To have no feeling but group loyalty is not intelligent, unless you are in a mass butchering in some trench and try to get your side home safe. Its not intelligent, but is very good adaption. To be paranoid and direct society tensions to outsiders of the group, is not intelligent, but well adapted to this cycle. All paid the ferry-woman in the end, before science came along and was able to suspend the self destructive vehicle for 70 years. So what is intelligence? Optimal Adaption to the inevitable? Hacking the circumstances, until the inevitable makes it a sizeable catastrophe? Lets assume, being on board, you favour Hacking the circumstances, aka research: You can build great structures from the various loop adaptions. The paranoid make for great explorers of stagnant fields, when forced through training and kept from noise over interpolation. The peacefull ones are great incremental researchers, in newly discovered fields. The warlike ones, make for great critics, unafflicted by emotions and with a few of the whole. Intelligence is the usefullness of pieces in societal machines. The individual is irrelevant.
Ligma123 4y ago
They can block any research they want in the West. The Chinese don't really care about those kinds of sensibilities, and if they find it useful to research something, they will.
- pannSun 4y ago
  The Chinese can do all the research they like, because the Western political and media classes will have no trouble ignoring them. See for example the polls of anthropologists (not geneticists) limited to the US, confidently proclaiming race (or some exceedingly narrow definition of it) doesn't exist: https://pubmed.ncbi.nlm.nih.gov/27874171/ https://pubmed.ncbi.nlm.nih.gov/27874171/
em1sar 4y ago
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captainmuon 4y ago
I can't say anything about this concrete case, but I think especially from an anti-racist and anti-sexist standpoint, one should thoroughly and ruthlessly perform research into differences, as that is the only way to falsify racist and sexist ideas. But if one is not convinced of anti-racism in the first place, and only conforms out of social pressure... then I can see why one would be afraid of such research. But what if research does find out meaningful differences? It's all a matter of how we look at it. We all agree that they are differences between different families. In one family people tend to be tall, in another they have musical talent, and so on. Its undeniable that there is some influence from genetics in our lives; it mostly becomes problematic if we think of it in terms of races, gender, instead of "my genetics, my parents, my ancestors". When it becomes essentialized, and puts people into boxes where it becomes a destiny (X people are like Y). I think in a saner world, we would want to know as much about our genetics and out biological potential as we could - alas, we are not in a sane world yet.
- Vt71fcAqt7 4y ago
  >But if one is not convinced of anti-racism in the first place, and only conforms out of social pressure... then I can see why one would be afraid of such research. Can you explain this point?
  - captainmuon 4y ago
    If you are not racist in your self-image, but you suspect that a study will show that some people are inferior, then you are likely going to be against such a study. I think this applies to many people. But if you are convinced that there are no meaningful differences between groups, or that the differences are innocuous, then there is no reason to oppose such research.
skymer 4y ago
I don't think the NIH is the only source for this type of data. Don't 23andMe and other DNA data companies have millions of genomes of individuals along with their names and addresses? These can easily be (or already have been) linked to much more personal, financial, and other information than is in the NIH data. We know these companies have used their data for law enforcement purposes. Do they also allow academic researchers to use it (anonymized, of course)?
- Vt71fcAqt7 4y ago
  UK biobank has allowed GWAS of intelligence and academic achievement.

184 points by Bostonian 4y ago

When I was in university, academics of every discipline made it clear to me: controversial research does not get published. Donors have huge sway over the university, and if the university fears controversial research will chill donors they will intervene. This is on top of other mechanisms like foreign censors (one academic had a colleague who's book was banned in much of South Asia), and good o'l fashioned twitter mobs. Tenure, despite it's elitism and problems of fostering a gerontocracy, is one of the few mechanisms that helps people explore controversial topics. But even then, finding can be cut and labs shut down even if the tenured professor is not fired.

narrator 4y ago

karpierz 4y ago
Your comment was flagged because you're arguing against a strawman of liberal ideology. If someone holds your views, then you don't need to convince them. If someone doesn't hold your views, then you haven't given them any more information. In either case, it doesn't move the conversation forward. All it can do is provoke a pointless argument. Hence, flagged.
- Vt71fcAqt7 4y ago
  Is it a strawman if the editorial referenced by the article basically holds GP's point (as I remember it at least, I can't see it now) >In creating this guidance, we took as a starting point the first article of the Universal Declaration of Human Rights — humans are “free and equal in dignity and rights”[0] This document was written before the discovery of the double helix. How can we take it as a starting point? I think the flagged post was perhaps flame-baity, but I don't think the point you're making is so cut and dry. As I remember it, GP's argument was that liberal ideology holds the equalness of all people as a fundamental truth rather than a result of inquiry. That seems to be what is happening in reputable scientific jounals. [0] https://www.nature.com/articles/s41562-022-01443-2 https://www.nature.com/articles/s41562-022-01443-2
  - narrator 4y ago
    Let's say a researcher wanted to do a study to find out what gene polymorphisms are associated with better performance on standardized tests. Nope, can't do it. Might reveal that some people, or God forbid kinds of people, are genetically less intelligent than others and that is a forbidden conclusion. Heck, this post might even get flagged because it raises the possibility that this proposition could be true. Meanwhile, in other countries, they are offering gene modifications to insert these genes discovered by researchers doing this forbidden research into consenting adults. Anyone in the west who would want to confirm their research would get locked out of the database.

verisimilitudes 4y ago

pseudo0 4y ago
I mean, we live in a society where big tech firms hire "machine learning safety" experts to prevent their algorithms from noticing the wrong patterns.

api 4y ago

I hate this stuff, but I also understand it. The human race has continuously proven itself too immature to deal rationally with the true nature of human biological diversity. Give us any axis on which we can sort ourselves and pretty soon we're using it to play ape status games or worse. We are not truly intelligent beings yet, just a clever neocortex grafted clumsily onto an animal. That animal happens to have a lot of instincts around tribal in-group/out-group behavior that immediately kick in when differences are discussed. My personal opinion is that things like genetic differences in ability or gender developmental stuff should be studied but it should be discussed in the most obtuse and utterly alien academic jargon possible for an effect bordering on encryption. It should be impossible to quote such research in any way that would be comprehensible to someone outside the field, making it impossible to cite it directly in support of popular political arguments. Or maybe gate it off entirely. Maybe we should not publish openly about human genetic or gender differences for the same reason we do not publish precise schematics for atomic weapons or detailed how-to documents on how to create a doomsday plague with a mail order CRISPR kit. That reason being: some of us will use such knowledge to kill each other. What I really hate is that humanity can't handle understanding itself.

denkmoon 4y ago
Kind of defeats the purpose of studying it doesn't it? Presumably we do research to inform decision, usually about social policy. Social policy is, ostensibly, dictated by voters in democratic societies. Might as well not do the research, and I don't mean that cynically. It might genuinely be for the best.
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Manuel_D 4y ago
This doesn't do anything to dissuade people from belief in racist ideas of genetic intelligence, or whatever else. Why are scientists gating off research and data, if they're so confident that the problematic conclusions are incorrect? Because the problematic conclusions are correct, the racist will say. Scientists wouldn't lock away data that disproved racist theories of intelligence, would they? It's a fallacious argument, but one that will probably work on a lot of people.

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smrtinsert 4y ago

Thus ends my research into why genocide is usually committed by high achievers. /s

dekhn 4y ago

I, too, have applied for, and then had revoked, access to dbGaP. In my case, I worked for a corporation that wanted to simplify the hosting of this data to appropriately credentialed researchers with the goal of making genomics look more like modern bigtech data processing. We made friends with the various program managers, did all the necessary due diligence, applied, got approved, downloading hundreds of terabytes of data, and then received a stern note from the leadership at NIH that we had to delete everything. Apparently, some Very Important People at NCBI didn't like Google and really didn't like the idea that we'd have a copy of all this data, even though the intent (I can say authoritatively since I was the founder of the project) was to accelerate scientific research. It's now hosted on AWS as a public/private dataset. I try to avoid human genomics or really any controlled-access dataset now. The total value in the data is much smaller than generally claimed, and entrenched interests go out of their way to gatekeep and sort of maintain an "artisanal, bespoke" approach to data processing. Now, if you want to use this data to make strong conclusions about the relationship between genotypes and human intelligence: best of luck to you, as you'll be grabbing the electrified third rail of American politics and science. Nearly every foray into this area generates controversy, and even intelligent, good-faith researchers end up in a trap of "appearing to be racist, or sexist". With career ending consequences. I study tardigrades instead now.

Pulcinella 4y ago
This actually makes me feel more confident in the system. I as an average citizen, would prefer if an advertising company did not have access to a giant database of genetic information. (I also don’t want Bezos to have access either, for what it’s worth).
- heavyset_go 4y ago
  I agree with this. Google doesn't need access to terabytes of genetic datasets and I'm glad that the NIH asked them to delete what they had.
  - shaboinkin 4y ago
    Imagine finding a correlation between specific genes and specific spending habits. Have Alphabet spin up a company that does what 23andMe does, offer a cooler, trendier version of the competition to entice adoption, then in the fine print say they’ll mine the data they find in your genes. Those resulting ads are gonna get ugly, quick. Edit: Although, in the context of medicine, it would be pretty cool if you can find trends in medicinal health that tend to be common with individuals like yourself, and give you warnings should conditions are more likely to arise. I imagine that would involve adding in a different dataset to compliment understanding characteristics of your DNA

Vt71fcAqt7 4y ago

>Note that none of the studies I am referring to include inquiries into race or sex differences. Apparently, NIH is clamping down on a broad range of attempts to explore the relationship between genetics and intelligence. For those who don't click the link. This is getting to really dangerous territory. Political correctness wants to remove genetics altogether from the study of the human condition. Blank-slate cultists are scared of what research will find.

stjohnswarts 4y ago
Sorry I can understand why they want to stop this. It would likely be used by MAGA and similar organizations to justify a lot of what I see as coming down the road from that particular political faction to justify policies aimed towards minorities and women.
- tomjen3 4y ago
  At that point they are no longer get to call themselves scientists. A scientist use the scientific method to get at truth. They don't get to hold back research because it might help a political course they don't like.
  - socialismisok 4y ago
    It's willfully naive to believe that a bad actor will feel any impact from being called "not a scientist". Plenty of people will call a eugenicist a scientist because it suits their narrative.
- tdeck 4y ago
  - remarkEon 4y ago
    I’m not sure what point you’re making. Studying human genetics is naziism?

norwalkbear 4y ago

Whoa, explains why all the cognitive boosters are coming from Asia these days. I know many many people dosing on custom peptides to keep up with the grind in game development these days. If I had to guess,I think the cats out of the bag already, and we are behind.

citboin 4y ago
Can you name one of these “ custom peptides “ or a source for one? This is interesting.
- norwalkbear 4y ago
  P21,p22, semax variants are the only ones I've heard.
  - bergenty 4y ago
    The first two are just “apoptosis inhibitors”. Perfect if you want to grow your own tumors and cancers.
    - JPLeRouzic 4y ago
      Are you sure you are talking of the P21 peptide (Ciliary neurotrophic factor), and not of Ras GTPase or p21 as a cyclin-dependent kinase inhibitor?
    - norwalkbear 4y ago
      Yea these aren't related to any genes, there are just custom names for a peptide booster series.
- norwalkbear 4y ago
  If you need help googling for more look up where Americans expats go in southeast Asia and south America.

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rafaelero 4y ago

All these scientific datasets gathered with taxpayers money should be made public. If people end up discovering "dangerous" patterns then well... so it's scientific progress. Sometimes they don't conform to our preferred bias.

pseudo0 4y ago
Could an entity with sufficient resources just FOIA the data? It does not appear to fall into any of the FOIA exemptions or exclusions. The closest would be #6, which protects information that would constitute a clearly unwarranted invasion of personal privacy. But since researchers are accessing this data, shouldn't it already be very carefully anonymized? https://www.hhs.gov/foia/exemptions-and-exclusions/index.html https://www.hhs.gov/foia/exemptions-and-exclusions/index.htm...
halostatue 4y ago
The problem is that while the genomic data is fine, the attached metadata regarding "race", "intelligence", etc. is of questionable and deeply biased origin. GIGO. By providing blocks on certain types of research which are known to be flawed because they try to make the garbage metadata meaningful…some of the worst of the bad science performed over the last 200 years gets eliminated. Really, some of the ideas that exist that form the basis of IQ &c. aren’t much better than phrenology.
- rafaelero 4y ago
  The quality of the data is important in every research field and it is a factor widely and openly discussed whenever a new paper is out. We can't even start having a conversation over it if such datasets are not easily available.
- Rebelgecko 4y ago
  What makes the data questionable/biased?
- LawTalkingGuy 4y ago
  There are many helpful questions that can be answered with imperfect data. What if you wanted to search populations with a high concentration of strongly retarded children to look for epidemics of birth defects, and then compare areas by race to see if it looked like there is any unexpected bias? A research block would stop this and other useful question from being answered. The data would easily suffice, whatever its defects, because you wouldn't need high-resolution IQ measurements, only enough to detect severe defects and you wouldn't need genetically-accurate racial identification, only a rough guess because that's what visible minority means. But because a bunch of pearl-clutchers are afraid of MAGAites the researcher trying to find and fix other cities like Flint Michigan would instead of demonized, denied tenure, and hounded out of academia.

tksiden 4y ago

Is this going to be like the stem cell research ban? America falls behind Europe and others?

bergenty 4y ago
The stem cell research ban was to assuage religious people. This I understand, the last thing I want is some insurance company saying I need to pay 10x because of my genes.
- rafaelero 4y ago
  > the last thing I want is some insurance company saying I need to pay 10x because of my genes. On average you would expect to pay the same of what you are paying today. But it would give discount to people with longevity genes and makes the bills more expensive to disease-prone individuals.
  - socialismisok 4y ago
    Yeah. That's fuuuuuuuuuuuucked up. "Sorry you were born more likely to suffer disease, which is unfortunately going to make your life much harder. We'd like to double down by making you pay more money too. Hope you are comfortable being both less wealthy and less healthy!"
iqgnotmics 4y ago
I doubt it will come from Europe; genetic testing (like 23andme and parental tests) is literally banned in France because "genes don't exist/don't matter" and "we're all French". This research will come from China, which has taboos about certain political topics, but not race.

LinkLink 4y ago

Good. If there's anyone out there anyone who thinks there isn't an entity that will happily take databases of genetic information and use it to develop the most horrifyingly efficient genome specific advertising and hiring selection algorithms i've got some snake oil to sell you (it has peptides).

Vt71fcAqt7 4y ago
"Send us a saliva sample for 2 months free + one month of your choice streaming service on us!"

tkk23 4y ago

What is preventing one of the genetic sequencing services from making the connections? There must be enough commercial databases available to allow them to "add data about health, education, occupation, and income". Sooner or later, the data will be available. Where will it end? Will "stupid" people stop having children or will they choose intelligent donors until genetic engineering is possible?

ckemere 4y ago

I think what the author sneakily avoids is that what is being withheld is socio-behavioral measurements made along with the genetic samples. And the reason is that people who didn't actually gather data themselves are ignorant of the shortcomings of the measurements. This includes both "intelligence" testing and measuring/assigning "race". As the parent of a phenotypically "white" child and "black" child (who share both parents, to be clear) this later point is really relevant. It's possible that people can study these things carefully, but an obvious precursor is understanding that if someone doubts their dataset is appropriate for something, they probably have good reasons. Bias in deep learning models is a classic case of this....

jacobriis 4y ago
"If someone doubts their dataset is appropriate for something, they probably have good reasons." The reason they "doubt" their dataset is appropriate is they don't like the conclusion.
- DoctorOW 4y ago
  It's understandable to me that the scientific would object to conclusions drawn from flawed datasets and intentionally poor methodology.
  - deleted 4y ago
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- bergenty 4y ago
  I doubt they’ve even made conclusions, they don’t want people to p hack their way to nefarious conclusions.
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MichaelCollins 4y ago

To those saying the data should be open in the pursuit of truth, damn the consequences, please consider this scenario: Researchers come to your community and tell everybody they're studying genetic diseases. Their research will provide comfort to those who suffer. Sounds great, so you all hand over your DNA/ec to these researchers. Then a few years later, using that same data, researchers publish studies saying that your people are genetically stupid. That you're a bunch of subhumans generally unqualified for anything but menial labor. How does that make you feel the next time researchers come around asking for more data? You'll tell them to fuck off, that's what you'd do. Why would you consent to research that demeans and degrades you and your people? And because your community now has an adversarial relationship with scientific research, that initial promise of research helping people goes out the window too. If using this sort of data as a weapon against others is permitted, you harm not only the people you collected the data from, but your own ability to collect data from them again in the future.

rafaelero 4y ago
> That you're a bunch of subhumans generally unqualified for anything but menial labor That seems more like a moral conclusion than a scientific one. Sure, maybe scientific evidence can fuel discrimination, but at least it gives us something over which we can have an intelligent conversation. It bounds a discussion that nowadays encounters no resistance or counterarguments in certain groups. And there will always be a group of people genetically smarter, more athletic, good looking than yours. So it doesn't take much thinking to reach the conclusion that we are all in this together.
- MichaelCollins 4y ago
  > That seems more like a moral conclusion than a scientific one. That distinction doesn't change anything. Even if you can keep that sort of language out of even the preprints, you'll have politicians citing the studies and making those statements themselves. It boils down to this: if you tell people you're collecting data to help them, then you can't allow that data to harm them.

inglor_cz 4y ago

There is a depressing # of voices here in this discussion which argue that ignorance is better than search for, however imperfect and fractional, knowledge, because humans (always some other humans) aren't capable of handling the truth. I will try to argue against them from a pragmatic point of view. The US sure is the top dog in scientific research, but far from the only dog. New competition has arisen, mostly Asian countries that do not care too much about historical Western traumas and sensibilities. The US is no more capable of blocking certain research worldwide that the Pope was, back in the Early Modern Era. By blocking intelligence research in the US, the US is basically ceding the ground to those competing countries on ideological grounds. As a result, they will get ahead and possibly discover new facts. (At this point, too many smart readers will wave the suggestion away with a bland "Intelligence is too complicated to be ever really understood." Sorry, I don't believe that. Intelligence is surely complicated, but so was atom splitting. It would be strange if there were never any results in the field, regardless of work spent.) Which means that a generation or two down the road, strategic adversaries may have tech to alter intelligence and other mental traits, because they will know what to edit and how. Perhaps not that much, but who knows how genetic and epigenetic manipulation in human beings is going to look like in 2070. Such an ability may prove even more world-changing than the atomic bomb, and the US is shooting itself in the foot by making sure that it won't be able to compete on the field early.

remarkEon 4y ago
Exactly this. What results from this field has the potential to be downright terrifying and dangerous on so many different dimensions. Which is exactly why it should be studied, especially in a society where we still ostensibly have some semblance of respect for the individual.
- thebradbain 4y ago
  The Cold War didn’t become a Nuclear War because both powers realized in some capacity that an arms race spurred by this very assumption that the other is creating ever more advanced technology which could threaten one’s power would ultimately just result in each country annihilating the other in the name of self defense/preserving power/stability/“peace”. Who benefits from those “advances” in technology in that case? To argue that dangerous/unethical/X research must be done just because a potential adversary is also doing that research is what armed the world with the nuclear option in the first place. Sure, nuclear weapons would likely have been theoretically discovered anyways, but did they need to be actually built? Did we need to execute on actually building and using nuclear weapons to understand practical use cases for nuclear energy? Because I am certain that powers today in an arms race with each other could and would, by this logic, discover and unleash entirely new man-made horrors upon this world that make nuclear weapons look elementary, if this is the path we’re going to go down. Just because some people choose to study eugenics does not mean we all have to (or should).

seydor 4y ago

There are ways to fight back against such abusers: - Announce that you re moving your research to china - Claim that the chinese will get an advantage on this - Claim a priori that your research demonstrates how genetics don't matter , even if it does unfortunately, research in europe / japan and elsewhere follows american trends to the T, so there is not even the probability of having some competition here

iqgnotmics 4y ago

pfisherman 4y ago

I see a lot of controversial comments about race, etc. Well the big joke is is that there are huge ancestry biases in genetic databases. They are not representative of much of humanity. The other thing I think people here are not considering is the issue of informed consent on the part of the patient. When patients agree to give biological samples, they generally do so with the understanding that that they will be used for a particular purpose or within some scope. It is unethical for researchers to use the bio samples or data outside the bounds of patient consent because it is disrespectful and violates their autonomy. For example, if I tell you that I am going to use your DNA to cure cancer, and then turn around and give it to someone who wants to develop a bio weapon (or targeted ads), that is not cool. You would probably feel duped, and never would have agreed had you known it could be used for such purposes. This is kind of an extreme example, but hopefully it makes the issue clear. My guess is that this is less about “censorship” and more about legal issues around patient consent.

KKKKkkkk1 4y ago

Remember the uproar when the George W. Bush admin banned research in stem cells on religious grounds? All the uproar from the left and the pledges of enlightened EU countries to step in to support the freedom of scientific inquiry? Whatever happened to all these folks?

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elizabethes 4y ago

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qikInNdOutReply 4y ago

Ah, the freedom of research vs what humanity made of it debate. One can detect what this debate is about, in the direction its proponents want to take the results. There is no search for a "cure" no search for a way to help, instead its almost always a search for a "anti-social" behaviour justification. I want to cut responsibilties for my fellow men, want to cut taxes and justify atrocities, in war and peace, looking scientific doing it. One can predict the "research" to be showing up usually in booming and busting places, were good-times spending has to be cut back and crisis looms. Example is the museums build for https://en.wikipedia.org/wiki/Peking_Man https://en.wikipedia.org/wiki/Peking_Man which currently has a sizeable pseudo science following, explaining any economic superiority with a "race" superiority and definatly do not look like the "Aryan" Uebermensch in old nazi germany museums. https://www.youtube.com/watch?v=TO7dvuDslJk https://www.youtube.com/watch?v=TO7dvuDslJk Want some mental model with some actual explenation power? Human groups cycle through resource crisis since the dawn of time. And we adapted natural instinctive responses to that. A exponential curve cycling endlessly between TheHornOfPlenty > PreCrisis > War > Reconstitution. And evolution, the blind, mindless industrious process it is, "optimizes" to any constant environment, even a cycling one. So there you have them, the whole zoo of adaptions and even "non-intelligence" which all have a place. To not party hard and produce labour intensive offspring en mass is "intelligent" if ones instinct consider the optimization for the loop holy. To have no feeling but group loyalty is not intelligent, unless you are in a mass butchering in some trench and try to get your side home safe. Its not intelligent, but is very good adaption. To be paranoid and direct society tensions to outsiders of the group, is not intelligent, but well adapted to this cycle. All paid the ferry-woman in the end, before science came along and was able to suspend the self destructive vehicle for 70 years. So what is intelligence? Optimal Adaption to the inevitable? Hacking the circumstances, until the inevitable makes it a sizeable catastrophe? Lets assume, being on board, you favour Hacking the circumstances, aka research: You can build great structures from the various loop adaptions. The paranoid make for great explorers of stagnant fields, when forced through training and kept from noise over interpolation. The peacefull ones are great incremental researchers, in newly discovered fields. The warlike ones, make for great critics, unafflicted by emotions and with a few of the whole. Intelligence is the usefullness of pieces in societal machines. The individual is irrelevant.

Ligma123 4y ago

They can block any research they want in the West. The Chinese don't really care about those kinds of sensibilities, and if they find it useful to research something, they will.

pannSun 4y ago
The Chinese can do all the research they like, because the Western political and media classes will have no trouble ignoring them. See for example the polls of anthropologists (not geneticists) limited to the US, confidently proclaiming race (or some exceedingly narrow definition of it) doesn't exist: https://pubmed.ncbi.nlm.nih.gov/27874171/ https://pubmed.ncbi.nlm.nih.gov/27874171/

em1sar 4y ago

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captainmuon 4y ago

I can't say anything about this concrete case, but I think especially from an anti-racist and anti-sexist standpoint, one should thoroughly and ruthlessly perform research into differences, as that is the only way to falsify racist and sexist ideas. But if one is not convinced of anti-racism in the first place, and only conforms out of social pressure... then I can see why one would be afraid of such research. But what if research does find out meaningful differences? It's all a matter of how we look at it. We all agree that they are differences between different families. In one family people tend to be tall, in another they have musical talent, and so on. Its undeniable that there is some influence from genetics in our lives; it mostly becomes problematic if we think of it in terms of races, gender, instead of "my genetics, my parents, my ancestors". When it becomes essentialized, and puts people into boxes where it becomes a destiny (X people are like Y). I think in a saner world, we would want to know as much about our genetics and out biological potential as we could - alas, we are not in a sane world yet.

Vt71fcAqt7 4y ago
>But if one is not convinced of anti-racism in the first place, and only conforms out of social pressure... then I can see why one would be afraid of such research. Can you explain this point?
- captainmuon 4y ago
  If you are not racist in your self-image, but you suspect that a study will show that some people are inferior, then you are likely going to be against such a study. I think this applies to many people. But if you are convinced that there are no meaningful differences between groups, or that the differences are innocuous, then there is no reason to oppose such research.

skymer 4y ago

I don't think the NIH is the only source for this type of data. Don't 23andMe and other DNA data companies have millions of genomes of individuals along with their names and addresses? These can easily be (or already have been) linked to much more personal, financial, and other information than is in the NIH data. We know these companies have used their data for law enforcement purposes. Do they also allow academic researchers to use it (anonymized, of course)?

Vt71fcAqt7 4y ago
UK biobank has allowed GWAS of intelligence and academic achievement.