Thank you for highlighting this issue. It is not just in these population wide studies that you talk about we face problems. As a Neurologist, I have participated in Alzheimer's research. In US we have millions of patients who have dementia and in significant proportion of the cases, it leads to Alzheimer's. Many of these patients are tracked over years and we have MRI imaging data for each patient acquired over the years. By applying machine learning models or even simple statistical markers on these MRI images we could get vast information about Alzheimer progress and treatment protocols.
The research group, I collaborate with was able to get MRI image data from a large hospital group in India for carrying out research but the university ethics rules prohibit usage of such data for research as we need paperwork to prove every patient consented to release of data, which the hospital did not have. I have spoken to patients and their families and most of them are ok with these images being on used for research purposes as long as identifying personal information ( name, place, exact date of birth etc) are purged. But hospitals cannot share this data as the law is very strict on patient privacy. Even if we had consent, hospitals fear lawsuits that could claim consent was not clear as many of them have decreased mental capacity due to dementia.
>> Scenarios once written off as scaremongering fictions are now a very real possibility. For instance, if an individual is diagnosed with high blood pressure by a One Medical doctor, will he later be advertised over-the-counter blood pressure medications whenever he shops at Whole Foods Market? Promoting wellness is one thing; dystopian corporate ‘nudging’ is quite another.
> So Hawley’s “nightmare scenario,” which hasn’t even happened yet, is that a consumer might have a choice to buy a product that could help him.
Richard, you are a smart guy, I can't believe you don't see the blindingly obvious conflict of interest here. If the same corporation is in charge of diagnosing the disease and selling the cure, they will be incentivized to (a) over-diagnose, and (b) direct patients to the brand of medication they sell (even if a competitior's brand would be better). This is not just a hypothetical, Purdue Pharma paid doctors to push their addictive opioids onto patients and we all know how that story ended. When a single entity controls every industry, that's socialism, not a free market.
Many good points in this article. However, the underlying assumption -- that the "health"care system in the USA is designed to help patients or humanity, improve health, and prevent disease, is itself false. The "health"care system is a giant redistribution racket controlled by 4 industries -- hospital, pharma, insurance, and medical device -- all in cahoots with the US Government. The USG subsidizes corn, rice, and wheat (the basis for all processed carbs), so they will be cheap and easy and tasty to eat. The USG redistributes wealth from the high IQ taxpayer to the low IQ non-taxpayer. The low IQ non-taxpayer then buys and consumed said processed carbs and processed foods... predictably, they get fat, sick, and cancerous. These lab rats then enter the "health"care system with no money and no insurance, and again, the high IQ, taxpayer with good medical insurance that he pays for (but rarely uses bc he's healthy), ends up subsidizing the low IQ, fat, sick, non-taxpayer... via Medicare, Medicaid, lots and lots of "free indigent" care in hospitals and ER around the country, which of course the high IQ folks pay for through higher medical bills and direct and indirect hospital subsidies from tax dollars. It's a 4 Trillion dollar racket. Probably 90% of that is spent like this... redistributed from the high IQ, to the low IQ's "health"care. Of course the low IQ fatties never actually "get better" -- this is laughable, no, the "health"care system keeps them just sick enough to be profitable, but not so sick that they die... that's the sweet spot.
So any discussions of "fixing the healthcare system" must first acknowledge these hugely perverse incentives and money flow, and address the root cause... i.e. redistributive dysgenics in the USA.
Thank you, Richard! You have opened a discussion that as a physician I feel needed to be opened a long time ago... as evidenced by the lively pro and con comments to it! I do aviation medicine in a medical world largely outside of HIPAA, where I can communicate openly with my pilot patients, FAA physicians, union physicians and airline medical directors when there is a complicated medical condition that requires a complex discussion. My physician friends outside of my world tell me it is extremely difficult to have these discussions, to the detriment of their patients' health. Again, thanks... I will monitor this.
I am a biomedical researcher, and I completely agree with this. IRBs and related bureaucratic processes are a huge tax on researchers’ time and surely retard progress, although it’s difficult to estimate by how much.
Amazon locked a guy out of his smart house for a week because a delivery driver reported he was racist. He got let back in his house eventually because he proved he's not a racist. But if you are racist, then no house for you.
But of course Lolbertarian dunderheads jump in to tell us that privacy concerns are minor. No doubt when someone can't turn on their lights because they don't want to take some medication, RH will be on hand to explain why it's fine because he signed a form 4 years earlier and, anyway, it's more important to have a pro-vaccine culture or whatever.
Interestingly , with regards to Covid vaccinations confounding variables do make an extreme difference . In a study in the NEJM for example the non boosted died from covid at a rate about 20 times higher than the boosted , but they also died from non Covid related diseases at a rate about 20 times higher than the boosted . https://www.nejm.org/doi/full/10.1056/NEJMc2306683
Privacy is of course important but HIPAA just totally sucks. Makes everything harder. Many doctors don’t communicate with their colleagues about a patient because it is such a hassle getting permission for everything. It instills a fear of accidentally hitting some legal bureaucratic trip wire (dealing with Medicare can be similar sometimes). So then we have to create very expensive, barely functional workarounds for the tangled mess we put ourselves in. I could go on and on.
Interesting argument but you had to spoil it with a silly aside about the Covid vax. Yes there were RCT for the Covid vaxx and mortality was higher in the intervention groups for MRNA vaccines. If you are not aware of this fact, you have no business opinionating in public about the topic. Unfortunately, since the labs destroyed the placebo groups by offering vaccination after just 3 months, we’ll never know about the long term effect on mortality. As for the supposed observational differences in mortality, the US data is so ridiculously flawed that there’s no point arguing about it. Some countries have much better data collection (Israel, Northern Europe...) but the problem is that when 90 pc of a population is vaccinated, those who are not are outliers (too sick, marginals, socially isolated).
If researchers want to use personal medical data of individuals they should pay those individuals for that data. If a company manages to turn a profit based on the information they got from personal medical data, they should pay those persons for contributing to the science. If a company intends ti turn a profit on our data then let us dip our beaks in the financial benefits produced. While progress is a fine ideal, that’s not what is at stake here. It’s about control and benefit. Let those of us producing data used in research benefit from our production and control whether we want to contribute to that progress or not.
Excellent article. Hard agree. This reminds me of Scott Alexander's articles on the insane bureaucracy of the IRB.
As someone in the software engineering field, I think your article missed one area of concern though: criminals and the fact that most organizations are horrible at IT security. Said another way, PII (personal identifiable information) is valuable for identity theft and criminals would like to hack organizations to steal that PII and then engage in said identity theft.
Example: credit cards. One piece of PII is your credit card number. Criminals would really love to get that and other PII to steal your identity and make fraudulent charges on your credit card. This happens all the time. The US government passed a law many years ago that said credit card companies are liable for those charges, not the consumer. So the credit card companies got fed up with how lax merchants' security practices were and tried to force them to improve their security through an insanely complicated process called Payment Card Industry Data Security Standard (PCI DSS). The reason it's so complicated is that merchants' view security as a cost they want to minimize and the credit card companies view it as a high risk that costs them millions of dollars. Incentives are massively misaligned.
So let's make this more concrete for the healthcare field. antibiotic resistant gonorrhea is a huge problem. A research group wants to test if bacteriophages is a more effective way to treat the STD. In this thought experiment, imagine we get rid of HIPAA and the IRB, the research group is responsible and promises to safeguard patients data and only use it for research purposes inan anonymized fashion. They then proceed to collect patient data and store all the data in a database. Unbeknownst to the researchers (who are NOT tech savvy at all) this data is not anonymized, they thought it was but their IT product doesn't actually support that and no one told them. Furthermore the database is a set of products that was EOLed 10 years ago and has major security vulnerabilities in it. But no one in the organization wants to spend money on reducing an unquantifiable risk and really what are the chances they'll get hacked?
Well, a criminal does hack them and exfiltrates their data and threatens to dump the non-anonymized data on the internet unless the organization pays 1 million dollars. The org refuses. The criminal follows through on the threat. Now every patient in that study is one google search away from everyone knowing they had a STD.
So: whose liable in this situation? What consequences if any does the organization deserve? Can the patient, whose information was leaked through the organizations negligent IT security practices, sue the org for damages?
To be clear, this is not a theoretical concern. This happens all the time now. I am not saying IRB or HIPAA solves this problem but removing them without a corresponding legal regime around liability to take proper care of one's PII may exacerbate the problems.
I can see an argument that says the benefits to human flourishing through better medicines far outweighs the negative externalities of bad people misusing PII but it's a very large negative externality. Said another way: it's cold comfort to someone who reputation has been destroyed through no fault of their own and is unlikely to personally benefit from those scientific advances.
This seems like a pretty predictable result of giving women political power. That's almost certainly not the only thing at work, nor am I saying women shouldn't have political power, but rather just making this as an observation that occurs to me. The mindset that you describe behind the regulatory bureaucracy, this sort of extreme neurotic hand-wringing over fringe worst-possible-case scenarios with no consideration of trade-offs, it strikes me as the sort of thinking more likely to be exhibited by, and thus well-received by, high-anxiety women who spend most of their lives worrying about absurd, non-existent and purely imagined threats or problems. Men are naturally more likely to brush off small harms and take risks in pursuit of a better end goal, and more capable of weighing trade-offs without falling into catastrophic, irrational thinking. I think that much is pretty undeniable.
When dealing with very small numbers denominators matter.
A survival rate of 99.6pct vs 99.9pct can be expressed as a death rate 3x higher. Headlines trumpeting 3x higher risk for a baseline risk that is measurably .001 are completely meaningless. With tiny numbers it is more informative to look at the data the other way (or both ways).
Great piece. I imagine the 3x to 9x better prospects if you are vaxxed against Covid may be right for the elderly and the sick. I doubt it’s even measurable for the young and healthy.
Thank you for highlighting this issue. It is not just in these population wide studies that you talk about we face problems. As a Neurologist, I have participated in Alzheimer's research. In US we have millions of patients who have dementia and in significant proportion of the cases, it leads to Alzheimer's. Many of these patients are tracked over years and we have MRI imaging data for each patient acquired over the years. By applying machine learning models or even simple statistical markers on these MRI images we could get vast information about Alzheimer progress and treatment protocols.
The research group, I collaborate with was able to get MRI image data from a large hospital group in India for carrying out research but the university ethics rules prohibit usage of such data for research as we need paperwork to prove every patient consented to release of data, which the hospital did not have. I have spoken to patients and their families and most of them are ok with these images being on used for research purposes as long as identifying personal information ( name, place, exact date of birth etc) are purged. But hospitals cannot share this data as the law is very strict on patient privacy. Even if we had consent, hospitals fear lawsuits that could claim consent was not clear as many of them have decreased mental capacity due to dementia.
>> Scenarios once written off as scaremongering fictions are now a very real possibility. For instance, if an individual is diagnosed with high blood pressure by a One Medical doctor, will he later be advertised over-the-counter blood pressure medications whenever he shops at Whole Foods Market? Promoting wellness is one thing; dystopian corporate ‘nudging’ is quite another.
> So Hawley’s “nightmare scenario,” which hasn’t even happened yet, is that a consumer might have a choice to buy a product that could help him.
Richard, you are a smart guy, I can't believe you don't see the blindingly obvious conflict of interest here. If the same corporation is in charge of diagnosing the disease and selling the cure, they will be incentivized to (a) over-diagnose, and (b) direct patients to the brand of medication they sell (even if a competitior's brand would be better). This is not just a hypothetical, Purdue Pharma paid doctors to push their addictive opioids onto patients and we all know how that story ended. When a single entity controls every industry, that's socialism, not a free market.
Many good points in this article. However, the underlying assumption -- that the "health"care system in the USA is designed to help patients or humanity, improve health, and prevent disease, is itself false. The "health"care system is a giant redistribution racket controlled by 4 industries -- hospital, pharma, insurance, and medical device -- all in cahoots with the US Government. The USG subsidizes corn, rice, and wheat (the basis for all processed carbs), so they will be cheap and easy and tasty to eat. The USG redistributes wealth from the high IQ taxpayer to the low IQ non-taxpayer. The low IQ non-taxpayer then buys and consumed said processed carbs and processed foods... predictably, they get fat, sick, and cancerous. These lab rats then enter the "health"care system with no money and no insurance, and again, the high IQ, taxpayer with good medical insurance that he pays for (but rarely uses bc he's healthy), ends up subsidizing the low IQ, fat, sick, non-taxpayer... via Medicare, Medicaid, lots and lots of "free indigent" care in hospitals and ER around the country, which of course the high IQ folks pay for through higher medical bills and direct and indirect hospital subsidies from tax dollars. It's a 4 Trillion dollar racket. Probably 90% of that is spent like this... redistributed from the high IQ, to the low IQ's "health"care. Of course the low IQ fatties never actually "get better" -- this is laughable, no, the "health"care system keeps them just sick enough to be profitable, but not so sick that they die... that's the sweet spot.
So any discussions of "fixing the healthcare system" must first acknowledge these hugely perverse incentives and money flow, and address the root cause... i.e. redistributive dysgenics in the USA.
There is a free market solution to this: https://childfreebc.com/candidates/ -- but it will take time to take effect.
Thank you, Richard! You have opened a discussion that as a physician I feel needed to be opened a long time ago... as evidenced by the lively pro and con comments to it! I do aviation medicine in a medical world largely outside of HIPAA, where I can communicate openly with my pilot patients, FAA physicians, union physicians and airline medical directors when there is a complicated medical condition that requires a complex discussion. My physician friends outside of my world tell me it is extremely difficult to have these discussions, to the detriment of their patients' health. Again, thanks... I will monitor this.
I am a biomedical researcher, and I completely agree with this. IRBs and related bureaucratic processes are a huge tax on researchers’ time and surely retard progress, although it’s difficult to estimate by how much.
Amazon locked a guy out of his smart house for a week because a delivery driver reported he was racist. He got let back in his house eventually because he proved he's not a racist. But if you are racist, then no house for you.
But of course Lolbertarian dunderheads jump in to tell us that privacy concerns are minor. No doubt when someone can't turn on their lights because they don't want to take some medication, RH will be on hand to explain why it's fine because he signed a form 4 years earlier and, anyway, it's more important to have a pro-vaccine culture or whatever.
Interestingly , with regards to Covid vaccinations confounding variables do make an extreme difference . In a study in the NEJM for example the non boosted died from covid at a rate about 20 times higher than the boosted , but they also died from non Covid related diseases at a rate about 20 times higher than the boosted . https://www.nejm.org/doi/full/10.1056/NEJMc2306683
Privacy is of course important but HIPAA just totally sucks. Makes everything harder. Many doctors don’t communicate with their colleagues about a patient because it is such a hassle getting permission for everything. It instills a fear of accidentally hitting some legal bureaucratic trip wire (dealing with Medicare can be similar sometimes). So then we have to create very expensive, barely functional workarounds for the tangled mess we put ourselves in. I could go on and on.
Interesting argument but you had to spoil it with a silly aside about the Covid vax. Yes there were RCT for the Covid vaxx and mortality was higher in the intervention groups for MRNA vaccines. If you are not aware of this fact, you have no business opinionating in public about the topic. Unfortunately, since the labs destroyed the placebo groups by offering vaccination after just 3 months, we’ll never know about the long term effect on mortality. As for the supposed observational differences in mortality, the US data is so ridiculously flawed that there’s no point arguing about it. Some countries have much better data collection (Israel, Northern Europe...) but the problem is that when 90 pc of a population is vaccinated, those who are not are outliers (too sick, marginals, socially isolated).
All regulation/taxation need to pass cost benefit analyses. This is just example #1376.
I might also mention:
Immigration laws
Land use regulations and building codes
NEPA
NRC "safety" regulations
CDC guidance on NPI during COVID
FDA non-approval of asymptomatic screening tests for COVID
FDA procedures for approving new drugs and medical devices
Regulation of firearm sales
Registration and voting
Net CO2 emissions
Note that this is not "deregulation" and in some cases could mean more stringent taxation/regulation.
If researchers want to use personal medical data of individuals they should pay those individuals for that data. If a company manages to turn a profit based on the information they got from personal medical data, they should pay those persons for contributing to the science. If a company intends ti turn a profit on our data then let us dip our beaks in the financial benefits produced. While progress is a fine ideal, that’s not what is at stake here. It’s about control and benefit. Let those of us producing data used in research benefit from our production and control whether we want to contribute to that progress or not.
Excellent article. Hard agree. This reminds me of Scott Alexander's articles on the insane bureaucracy of the IRB.
As someone in the software engineering field, I think your article missed one area of concern though: criminals and the fact that most organizations are horrible at IT security. Said another way, PII (personal identifiable information) is valuable for identity theft and criminals would like to hack organizations to steal that PII and then engage in said identity theft.
Example: credit cards. One piece of PII is your credit card number. Criminals would really love to get that and other PII to steal your identity and make fraudulent charges on your credit card. This happens all the time. The US government passed a law many years ago that said credit card companies are liable for those charges, not the consumer. So the credit card companies got fed up with how lax merchants' security practices were and tried to force them to improve their security through an insanely complicated process called Payment Card Industry Data Security Standard (PCI DSS). The reason it's so complicated is that merchants' view security as a cost they want to minimize and the credit card companies view it as a high risk that costs them millions of dollars. Incentives are massively misaligned.
So let's make this more concrete for the healthcare field. antibiotic resistant gonorrhea is a huge problem. A research group wants to test if bacteriophages is a more effective way to treat the STD. In this thought experiment, imagine we get rid of HIPAA and the IRB, the research group is responsible and promises to safeguard patients data and only use it for research purposes inan anonymized fashion. They then proceed to collect patient data and store all the data in a database. Unbeknownst to the researchers (who are NOT tech savvy at all) this data is not anonymized, they thought it was but their IT product doesn't actually support that and no one told them. Furthermore the database is a set of products that was EOLed 10 years ago and has major security vulnerabilities in it. But no one in the organization wants to spend money on reducing an unquantifiable risk and really what are the chances they'll get hacked?
Well, a criminal does hack them and exfiltrates their data and threatens to dump the non-anonymized data on the internet unless the organization pays 1 million dollars. The org refuses. The criminal follows through on the threat. Now every patient in that study is one google search away from everyone knowing they had a STD.
So: whose liable in this situation? What consequences if any does the organization deserve? Can the patient, whose information was leaked through the organizations negligent IT security practices, sue the org for damages?
To be clear, this is not a theoretical concern. This happens all the time now. I am not saying IRB or HIPAA solves this problem but removing them without a corresponding legal regime around liability to take proper care of one's PII may exacerbate the problems.
I can see an argument that says the benefits to human flourishing through better medicines far outweighs the negative externalities of bad people misusing PII but it's a very large negative externality. Said another way: it's cold comfort to someone who reputation has been destroyed through no fault of their own and is unlikely to personally benefit from those scientific advances.
This seems like a pretty predictable result of giving women political power. That's almost certainly not the only thing at work, nor am I saying women shouldn't have political power, but rather just making this as an observation that occurs to me. The mindset that you describe behind the regulatory bureaucracy, this sort of extreme neurotic hand-wringing over fringe worst-possible-case scenarios with no consideration of trade-offs, it strikes me as the sort of thinking more likely to be exhibited by, and thus well-received by, high-anxiety women who spend most of their lives worrying about absurd, non-existent and purely imagined threats or problems. Men are naturally more likely to brush off small harms and take risks in pursuit of a better end goal, and more capable of weighing trade-offs without falling into catastrophic, irrational thinking. I think that much is pretty undeniable.
When dealing with very small numbers denominators matter.
A survival rate of 99.6pct vs 99.9pct can be expressed as a death rate 3x higher. Headlines trumpeting 3x higher risk for a baseline risk that is measurably .001 are completely meaningless. With tiny numbers it is more informative to look at the data the other way (or both ways).
Great piece. I imagine the 3x to 9x better prospects if you are vaxxed against Covid may be right for the elderly and the sick. I doubt it’s even measurable for the young and healthy.
"...the answer is a vigorous enforcement of anti-discrimination laws in this area..."
Not a phrase one usually expects to see in an article written by Richard Hanania.