“use genomic data to justify racial discrimination by claiming that observed differences between racial groups are largely genetically determined. MTT argue that this research has neither practical value, because our society has accepted that people deserve to be treated as individuals rather than as groups, nor theoretical value, because the methods employed cannot distinguish genetic from environmental causes.”
This is disingenuous. If genetic research can explain even some of the black/white achievement gap it serves immense value in a society that is fixated on that gap and seeking to remedy it by stiffing me as a white man with ever higher levels of taxation and discrimination.
Quantifying between/within group heritability will not actually tell you whether the gaps are environmentally caused, whether they are "justified", or how to address them:
Efforts to understand specific genetic mechanisms may tell you something about causes and MTT are supportive of such efforts. And you will be happy to hear (as I note in the piece) that the NIH actively funds this kind of work. But it's telling that the genomic racism movement is completely uninterested in it.
New subscriber after your appearance on Awais' substack (I'm a psychiatrist and researcher from the UK) and you have not disappointed. Really interesting and informative, and I appreciate the level of thought and rigor you have put in to this detailed article.
You tackle several big issues in this post. I will focus on one of them, which is the desirability of wresting control of genomic data from self-interested gatekeepers and putting it in the hands of consenting participants in research studies. I wholeheartedly agree with this goal and encourage you to pursue paths toward shifting public policy in this direction. The major challenge is that, in studies of any size, there must be a trusted intermediary between participants and researchers. It is simply impractical for researchers to engage in 1:1 dialog with all participants in large studies. The importance of a trusted intermediary is particularly compelling since interpretation of the scope of consent is nearly always at issue. Things change between the time when samples and data are collected and the much later date at which most analyses are carried out.
Ten years ago I was a minor author on a policy piece entitled "Redefining Genomic Privacy: Trust and Empowerment" that made this case (Erlich, Yaniv et al. 2014. “Redefining Genomic Privacy: Trust and Empowerment.” PLoS BIOLOGY 12 (11): e1001983. https://doi.org/10.1371/journal.pbio.1001983.) Our paper has attracted considerable interest (>75 citations), but I cannot detect any effect on policy. Many vested interests, few of which relate either to the actual protection of research subjects or the public good, make this system difficult to reform.
Thanks for the comment and a great reference, which I wish I had read and cited in my post. I agree that this is a very slow moving process. I will say that I am optimistic for a few reasons: (1) While the NIH is not yet outright mandating consent for broad sharing, their language is getting quite strong and including guidelines for grant reviewers. At the end of the day, funding is where the most pressure can be applied and it's good to see the NIH doing so. (2) In my experience at a cancer institute, there is increasing enthusiasm for broad data sharing for many different research purposes, simple consent agreements without legalese, and tiers of consent for patients who have concerns. This is just anecdotal but it is where I see the momentum going. Finally, and most speculatively, modern tools like video presentations, interactive web-sites, and even AI chatbots are starting to be tested out as a way of giving participants a more 1:1 experience without requiring an army of investigators.
The public is quickly losing faith in social science as it has obviously become politicized, along with the widespread fraud that has been discovered recently. If you make the argument that certain kinds of knowledge are harmful, no matter how well intentioned, it will remove any doubt in the public that social scientists aren't actually concerned about the empirical facts. This new (clever) argument about "consent" will seem like just another excuse to block research which might disprove the beliefs many social scientists hold about human nature.
I'll just reiterate that obtaining participant consent is the cornerstone of appropriate scientific study and flouting it (either by studying data that was not consented OR by blocking access to data that WAS consented) is both unethical and has been highly damaging to research efforts in the past.
"The diabetes study did not yield results and the project was shortly ended, but the investigators continued to use the data for research that it had not been consented for, including studies of psychiatric disorders and evolutionary history. The latter usage was particularly egregious as it directly challenged the tribe’s beliefs about their ancestral origins."
Consent is important. At the same time, science has directly challenged just about every single group's prescientific beliefs about the world and about itself. Hungarians presumably did not consent to being found by linguists to be at least culturally related to Finns and Mordvinians rather than to Huns. There cannot be something intrinsically invalid about research that happens to go against a group's traditional beliefs - or against the beliefs that a leadership resurrects or cobbles together, as is most often the case in a national or religious awakening. Does going against such beliefs make research without or against consent more "egregious" than it already is? Maybe, but it is not so clear.
(In this particular case, the genetic data only illustrated what was already known, viz., the ancestors of Native Americans came from elsewhere a few tens of thousands of years ago, mainly through Beringia. In countries with a Native American or partly Native American majority, this fact is thoroughly uncontroversial.)
"Beyond the immediate impact on the tribe itself, the case was highly publicized and led to broad distrust of biomedical research in the Native American community. As a consequence, population genetics research of Native Americans in the US was effectively frozen for years."
Tribal leadership has agency; it does not simply react, as an automaton, to a failure to request informed consent from a particular tribe. If what happened was not just their decision or mainly their decision, then it would be necessary to know who or what was behind freezing such research, with all the deleterious consequences that entails.
I think the specific case of the Havasupai is fairly clear cut, the participants wanted their data used for a specific purpose which the investigators agreed to, then the investigators simply broke their agreement. The tribe got zero benefit out of the primary study -- no genetic mechanism was discovered that could help them and in fact the search for one was very quickly abandoned -- while the researchers benefited handily by being able to investigate whatever they pleased. So I do not blame them or other US tribal groups from responding with extreme skepticism to subsequent genetic studies, even though I think such studies can be very beneficial to the health of these communities.
All that said, I agree that the broader question of consent becomes much more complicated when unwanted information about a community can be learned from one or a few consenting members of that community. In general I errr on the side of individual autonomy over their specimens and data. But back to the point of this post, whatever investigators decide it should be decided at the time the study is designed and consented, not at some much later date when a new researcher is requesting access.
Fair enough, but it is important to stick to the good argument, nor the bad ones. I don't think "scientists disprove an obviously incorrect origin myth of some group" counts as a "particularly egregious" use of the data; that result was clear before they ever sequenced their genomes. Non-Europeans have agency and all that, they deserve to be treated like adults if their beliefs conflict with reality in the same way that scientists (rightly) treat people who believe in Adam and Eve or Noah's arc.
If you enter into an agreement with someone and they say "you can use our data for X but under NO circumstances can you use our data for Y" and then you immediately stop using it for X and focus most of your attention on Y -- I would say that's pretty egregious. Treating people like adults surely means not lying to their face?
On what are you basing your claim? They tried using it for X, it didn't work out, I doubt they ever talked about Y with any of the people involved either way. Again, maybe make it clearer to people when they're signing up for other miscellaneous uses of their DNA. But I don't see any reason to believe they lied to them about anything. My point is just that hurt feelings because you believe some factually untrue claim shouldn't count as particularly egregious harms (in a way that using their data for random other studies wouldn't as well), and they wouldn't in other contexts. Surely if Mormons believe some Native Americans are actually Israelites, refuting that wouldn't be treated in the same way.
Quoting from the NYT article on that drama:
> “I’m not against scientific research,” said Carletta Tilousi, 39, a member of the Havasupai tribal council. “I just want it to be done right. They used our blood for all these studies, people got degrees and grants, and they never asked our permission.”
> Ms. Tilousi understood little of the technical aspect, but what she heard bore no resemblance to the diabetes research she had pictured when she had given her own blood sample years earlier.
Seems like they were just surprised their DNA was used for more than the original inquiry.
> One reported a high degree of inbreeding, a measure that can correspond with a higher susceptibility to disease. Ms. Tilousi found that offensive. “We say if you do that, a close relative of yours will die,” she said.
With some misunderstanding of the results sprinkled in. But I'm not aware of any claims that there was any specific breach of a promise to them not to study where their ancestors came from etc. I doubt anyone would have really complained about the eventual other studies if they had first found something that helped deal with their diabetes problem.
"In the September 8 letter, counsel for the Tribe asserted that “ASU conducted genetics experiments on the Havasupai blood samples or derivatives ․ for purposes unrelated to diabetes” without tribal members' consent. Without consent, the Tribe further asserted, ASU “published papers unrelated to diabetes but which disclosed private genetic data and other private information derived from the Havasupai blood samples.” Further, the Tribe alleged, ASU distributed tribal members' blood samples to third-party institutions without consent to do so. These third-party institutions conducted their own genetics research and published the results, all without consent, the Tribe alleged. "
These claims have not been disputed and the university settled the lawsuit and returned the samples.
"MTT argue that this research has neither practical value, because our society has accepted that people deserve to be treated as individuals rather than as groups"
Maybe society had accepted that in the 90s, but it's quite clear the pendulum has swung the other way and many on the progressive side very much focus on groups, along the victim/oppressor axis.
Not sure about that. In STEM, gender equity programs would seem to be much more prevalent.
That said: the "important principle" is something that many people believe in (including myself), but it is not something normative in the US as it is, say, in France (which is consistent about the matter: you cannot publish statistics by race in the newspaper, for instance). Indeed, for the last ten years or so, it has been very fashionable to denounce it as backwards, though perhaps that is winding down.
All of that takes us away from genetics - but I also wondered whether that statement was some sort of provocation, to see who would question it first.
It makes me nervous to see you aligned with Stuart Richie, even if your arguments are not entirely the same. In Richie’s book Intelligence: All that Matters, he describes Francis Galton as someone who “would likely have been appalled to see the end results of the eugenics movement.” (p. 102) I find that statement, and Richie's obfuscating of Galton's genocidal beliefs, both upsetting and telling.
Appreciate the response and links, and yes that does make me feel better. I read your previous criticism of his research, I can't claim to understand most of it but I appreciate you pushing back on his aggressive genetic determinism. Don't know if you've spent time pondering how explicitly eugenic ideals are being revived in the AI space but I for one would be curious to read your thoughts on this topic.
I have no idea. The one interaction I've had with him, where I pointed out an error in his book that he acknowledged has not aged well, is linked above. But social media can be a very frustrating experience and I don't begrudge people for their blocks (for a long time I had the workwear guy on twitter blocked simply because I couldn't handle how much of his content was coming into my feed).
The false positives of behavioral genetic’s studies for the past 3 decades has driven the race scientists. “But this time our meager results are the real deal.” Do you not see the problem, here? See the comment above. They’ll grab at any bullshit correlation touted by scientists busy promoting their research. There aren’t “educational attainment” genes. Have some common sense. It’s ludicrous and harmful. Are you aware that astrology studies generally find some correlations? These are just false positives, or do you believe in the Mars effect?
I think there is already clear evidence that the broader study of behavior and intelligence has value. A good example of this is the rare variant GWAS of Chen et al. (https://www.nature.com/articles/s41588-023-01398-8) which used educational attainment as a proxy phenotype to identify genes associated with developmental delay, followed by experimental validation.
“Rare variants” often cause mental disabilities. This is simply not the same thing as saying that nonpathological genetic variants convey some mythical studiousness or intelligence. Anyone can understand why a kid with a genetic issue that puts them in special education is not likely to go to college. This conflation has also been used to claim schizophrenia has a genetic basis. It’s a lack of understanding of who gets a diagnosis of schizophrenia in the real world.
Invoking common sense is interesting, given that you are assuming that for some special reason the brain isn't influences by genetics or evolution in the same way that everything else about animals is.
“use genomic data to justify racial discrimination by claiming that observed differences between racial groups are largely genetically determined. MTT argue that this research has neither practical value, because our society has accepted that people deserve to be treated as individuals rather than as groups, nor theoretical value, because the methods employed cannot distinguish genetic from environmental causes.”
This is disingenuous. If genetic research can explain even some of the black/white achievement gap it serves immense value in a society that is fixated on that gap and seeking to remedy it by stiffing me as a white man with ever higher levels of taxation and discrimination.
Quantifying between/within group heritability will not actually tell you whether the gaps are environmentally caused, whether they are "justified", or how to address them:
https://theinfinitesimal.substack.com/p/no-heritability-will-not-tell-you
Efforts to understand specific genetic mechanisms may tell you something about causes and MTT are supportive of such efforts. And you will be happy to hear (as I note in the piece) that the NIH actively funds this kind of work. But it's telling that the genomic racism movement is completely uninterested in it.
New subscriber after your appearance on Awais' substack (I'm a psychiatrist and researcher from the UK) and you have not disappointed. Really interesting and informative, and I appreciate the level of thought and rigor you have put in to this detailed article.
Thanks for reading!
You tackle several big issues in this post. I will focus on one of them, which is the desirability of wresting control of genomic data from self-interested gatekeepers and putting it in the hands of consenting participants in research studies. I wholeheartedly agree with this goal and encourage you to pursue paths toward shifting public policy in this direction. The major challenge is that, in studies of any size, there must be a trusted intermediary between participants and researchers. It is simply impractical for researchers to engage in 1:1 dialog with all participants in large studies. The importance of a trusted intermediary is particularly compelling since interpretation of the scope of consent is nearly always at issue. Things change between the time when samples and data are collected and the much later date at which most analyses are carried out.
Ten years ago I was a minor author on a policy piece entitled "Redefining Genomic Privacy: Trust and Empowerment" that made this case (Erlich, Yaniv et al. 2014. “Redefining Genomic Privacy: Trust and Empowerment.” PLoS BIOLOGY 12 (11): e1001983. https://doi.org/10.1371/journal.pbio.1001983.) Our paper has attracted considerable interest (>75 citations), but I cannot detect any effect on policy. Many vested interests, few of which relate either to the actual protection of research subjects or the public good, make this system difficult to reform.
Keep at it.
Thanks for the comment and a great reference, which I wish I had read and cited in my post. I agree that this is a very slow moving process. I will say that I am optimistic for a few reasons: (1) While the NIH is not yet outright mandating consent for broad sharing, their language is getting quite strong and including guidelines for grant reviewers. At the end of the day, funding is where the most pressure can be applied and it's good to see the NIH doing so. (2) In my experience at a cancer institute, there is increasing enthusiasm for broad data sharing for many different research purposes, simple consent agreements without legalese, and tiers of consent for patients who have concerns. This is just anecdotal but it is where I see the momentum going. Finally, and most speculatively, modern tools like video presentations, interactive web-sites, and even AI chatbots are starting to be tested out as a way of giving participants a more 1:1 experience without requiring an army of investigators.
The public is quickly losing faith in social science as it has obviously become politicized, along with the widespread fraud that has been discovered recently. If you make the argument that certain kinds of knowledge are harmful, no matter how well intentioned, it will remove any doubt in the public that social scientists aren't actually concerned about the empirical facts. This new (clever) argument about "consent" will seem like just another excuse to block research which might disprove the beliefs many social scientists hold about human nature.
I'll just reiterate that obtaining participant consent is the cornerstone of appropriate scientific study and flouting it (either by studying data that was not consented OR by blocking access to data that WAS consented) is both unethical and has been highly damaging to research efforts in the past.
"The diabetes study did not yield results and the project was shortly ended, but the investigators continued to use the data for research that it had not been consented for, including studies of psychiatric disorders and evolutionary history. The latter usage was particularly egregious as it directly challenged the tribe’s beliefs about their ancestral origins."
Consent is important. At the same time, science has directly challenged just about every single group's prescientific beliefs about the world and about itself. Hungarians presumably did not consent to being found by linguists to be at least culturally related to Finns and Mordvinians rather than to Huns. There cannot be something intrinsically invalid about research that happens to go against a group's traditional beliefs - or against the beliefs that a leadership resurrects or cobbles together, as is most often the case in a national or religious awakening. Does going against such beliefs make research without or against consent more "egregious" than it already is? Maybe, but it is not so clear.
(In this particular case, the genetic data only illustrated what was already known, viz., the ancestors of Native Americans came from elsewhere a few tens of thousands of years ago, mainly through Beringia. In countries with a Native American or partly Native American majority, this fact is thoroughly uncontroversial.)
"Beyond the immediate impact on the tribe itself, the case was highly publicized and led to broad distrust of biomedical research in the Native American community. As a consequence, population genetics research of Native Americans in the US was effectively frozen for years."
Tribal leadership has agency; it does not simply react, as an automaton, to a failure to request informed consent from a particular tribe. If what happened was not just their decision or mainly their decision, then it would be necessary to know who or what was behind freezing such research, with all the deleterious consequences that entails.
I think the specific case of the Havasupai is fairly clear cut, the participants wanted their data used for a specific purpose which the investigators agreed to, then the investigators simply broke their agreement. The tribe got zero benefit out of the primary study -- no genetic mechanism was discovered that could help them and in fact the search for one was very quickly abandoned -- while the researchers benefited handily by being able to investigate whatever they pleased. So I do not blame them or other US tribal groups from responding with extreme skepticism to subsequent genetic studies, even though I think such studies can be very beneficial to the health of these communities.
All that said, I agree that the broader question of consent becomes much more complicated when unwanted information about a community can be learned from one or a few consenting members of that community. In general I errr on the side of individual autonomy over their specimens and data. But back to the point of this post, whatever investigators decide it should be decided at the time the study is designed and consented, not at some much later date when a new researcher is requesting access.
Fair enough, but it is important to stick to the good argument, nor the bad ones. I don't think "scientists disprove an obviously incorrect origin myth of some group" counts as a "particularly egregious" use of the data; that result was clear before they ever sequenced their genomes. Non-Europeans have agency and all that, they deserve to be treated like adults if their beliefs conflict with reality in the same way that scientists (rightly) treat people who believe in Adam and Eve or Noah's arc.
If you enter into an agreement with someone and they say "you can use our data for X but under NO circumstances can you use our data for Y" and then you immediately stop using it for X and focus most of your attention on Y -- I would say that's pretty egregious. Treating people like adults surely means not lying to their face?
On what are you basing your claim? They tried using it for X, it didn't work out, I doubt they ever talked about Y with any of the people involved either way. Again, maybe make it clearer to people when they're signing up for other miscellaneous uses of their DNA. But I don't see any reason to believe they lied to them about anything. My point is just that hurt feelings because you believe some factually untrue claim shouldn't count as particularly egregious harms (in a way that using their data for random other studies wouldn't as well), and they wouldn't in other contexts. Surely if Mormons believe some Native Americans are actually Israelites, refuting that wouldn't be treated in the same way.
Quoting from the NYT article on that drama:
> “I’m not against scientific research,” said Carletta Tilousi, 39, a member of the Havasupai tribal council. “I just want it to be done right. They used our blood for all these studies, people got degrees and grants, and they never asked our permission.”
> Ms. Tilousi understood little of the technical aspect, but what she heard bore no resemblance to the diabetes research she had pictured when she had given her own blood sample years earlier.
Seems like they were just surprised their DNA was used for more than the original inquiry.
> One reported a high degree of inbreeding, a measure that can correspond with a higher susceptibility to disease. Ms. Tilousi found that offensive. “We say if you do that, a close relative of yours will die,” she said.
With some misunderstanding of the results sprinkled in. But I'm not aware of any claims that there was any specific breach of a promise to them not to study where their ancestors came from etc. I doubt anyone would have really complained about the eventual other studies if they had first found something that helped deal with their diabetes problem.
I'm basing this on the text of the lawsuit brought by the Havasupai tribe, which I linked in the post (https://caselaw.findlaw.com/court/az-court-of-appeals/1425062.html) and includes claims like the following:
"In the September 8 letter, counsel for the Tribe asserted that “ASU conducted genetics experiments on the Havasupai blood samples or derivatives ․ for purposes unrelated to diabetes” without tribal members' consent. Without consent, the Tribe further asserted, ASU “published papers unrelated to diabetes but which disclosed private genetic data and other private information derived from the Havasupai blood samples.” Further, the Tribe alleged, ASU distributed tribal members' blood samples to third-party institutions without consent to do so. These third-party institutions conducted their own genetics research and published the results, all without consent, the Tribe alleged. "
These claims have not been disputed and the university settled the lawsuit and returned the samples.
"MTT argue that this research has neither practical value, because our society has accepted that people deserve to be treated as individuals rather than as groups"
Maybe society had accepted that in the 90s, but it's quite clear the pendulum has swung the other way and many on the progressive side very much focus on groups, along the victim/oppressor axis.
The pendulum certainly swings back and forth on this but I think it is an important principle that most people still believe in.
Maybe, but most people have also been affected by various government/corporate racial equity programs that treated them as a group.
Not sure about that. In STEM, gender equity programs would seem to be much more prevalent.
That said: the "important principle" is something that many people believe in (including myself), but it is not something normative in the US as it is, say, in France (which is consistent about the matter: you cannot publish statistics by race in the newspaper, for instance). Indeed, for the last ten years or so, it has been very fashionable to denounce it as backwards, though perhaps that is winding down.
All of that takes us away from genetics - but I also wondered whether that statement was some sort of provocation, to see who would question it first.
It makes me nervous to see you aligned with Stuart Richie, even if your arguments are not entirely the same. In Richie’s book Intelligence: All that Matters, he describes Francis Galton as someone who “would likely have been appalled to see the end results of the eugenics movement.” (p. 102) I find that statement, and Richie's obfuscating of Galton's genocidal beliefs, both upsetting and telling.
I've criticized Ritchie's work in the past (https://theinfinitesimal.substack.com/p/does-education-increase-intelligence) and I've pointed out glaring errors in his book with respect to molecular genetic analyses (https://x.com/SashaGusevPosts/status/1789724007870132285). But I do think he offers a thoughtful and well-balanced take on this specific issue, even though I disagree with him on the underlying principle. And he at least went through the trouble to actually point to a specific study that had vague gatekeeping. If it is of any consolation, I am one of only four people Ritchie has blocked on social media ( https://clearsky.app/stuartjritchie.bsky.social/blocking ).
Appreciate the response and links, and yes that does make me feel better. I read your previous criticism of his research, I can't claim to understand most of it but I appreciate you pushing back on his aggressive genetic determinism. Don't know if you've spent time pondering how explicitly eugenic ideals are being revived in the AI space but I for one would be curious to read your thoughts on this topic.
Huh, can you point to why that is?
I mostly come from his world view but progressively see value in and understand your arguments better.
It might be of interest to see how you might both disagree so vehemently that he'd block you
I have no idea. The one interaction I've had with him, where I pointed out an error in his book that he acknowledged has not aged well, is linked above. But social media can be a very frustrating experience and I don't begrudge people for their blocks (for a long time I had the workwear guy on twitter blocked simply because I couldn't handle how much of his content was coming into my feed).
The false positives of behavioral genetic’s studies for the past 3 decades has driven the race scientists. “But this time our meager results are the real deal.” Do you not see the problem, here? See the comment above. They’ll grab at any bullshit correlation touted by scientists busy promoting their research. There aren’t “educational attainment” genes. Have some common sense. It’s ludicrous and harmful. Are you aware that astrology studies generally find some correlations? These are just false positives, or do you believe in the Mars effect?
I think there is already clear evidence that the broader study of behavior and intelligence has value. A good example of this is the rare variant GWAS of Chen et al. (https://www.nature.com/articles/s41588-023-01398-8) which used educational attainment as a proxy phenotype to identify genes associated with developmental delay, followed by experimental validation.
“Rare variants” often cause mental disabilities. This is simply not the same thing as saying that nonpathological genetic variants convey some mythical studiousness or intelligence. Anyone can understand why a kid with a genetic issue that puts them in special education is not likely to go to college. This conflation has also been used to claim schizophrenia has a genetic basis. It’s a lack of understanding of who gets a diagnosis of schizophrenia in the real world.
Invoking common sense is interesting, given that you are assuming that for some special reason the brain isn't influences by genetics or evolution in the same way that everything else about animals is.
How far did your cow go in school?