EPA Finalizes Rule Limiting Research Used for Public Health, Environmental Policy (axios.com) 66
The Environmental Protection Agency has finalized a rule that limits scientific research used in the crafting of public health and environmental policy. From a report: Researchers argue the rule that prioritizes studies with all data available publicly "essentially blocks" research that uses personal information and confidential medical records that can't be released because of privacy conditions, per the New York Times, which first reported the news Monday. A requirement to disclose raw data would have prevented past major studies from going ahead. "Such studies have served as the scientific underpinnings of some of the most important clean air and water regulations of the past half century," the Times notes. The EPA declined a request for comment, but referred Axios to an op-ed by Administrator Andrew Wheeler in the Wall Street Journal published Monday evening headlined, "Why We're Ending the EPA's Reliance on Secret Science." Wheeler is expected to officially announce the rule Tuesday. In the op-ed, Wheeler insists the rule is "not a stick for forcing scientists to choose between respecting the privacy and rights of their study participants and submitting their work for consideration."
Re: Sounds like a good rule to me (Score:4, Insightful)
The intent is to defund.
Sounds like a bad rule to me (Score:5, Insightful)
I understand the point of the rule, but in the current legal environment, this means throwing out good studies.
Medical data is protected by law; and the HIPAA privacy rule is very stringent and doesn't allow exceptions for good intent. It's not that the researchers don't want to release data, it's that the law forbids them from releasing it and puts people in jail if they do.
If you aren't allowed to pay use good studies, then that means that they will only pay attention to bad studies.
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What you claim is a side effect is actually the major purpose of this decision. This is the Trump EPA, and the goal is to prohibit studies that would limit corporations.
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If a study is needed that relies on PII, why not seek permission and compensate the study participants for waving their right to privacy?
Because it would be difficult to get a statistically valid sample population if you only include test subjects who are willing to sell their privacy?
Re:Sounds like a good rule to me (Score:5, Insightful)
I would sooner believe a study which makes its data publicly available for independent verification over one in which we are just supposed to take the researcher's word for it. Rather absurd that it has taken this long for this rule to be put into place.
No, you wouldn't. There are countless studies out there with publicly available data showing trickle down economics doesn't work, showing the dangers of drug use, showing this or that, and you, along with countless millions of others, will gladly ignore the evidence because it doesn't fit your narrative.
But here's something. Are you in favor of the con artist, and all the other Republicans attempting a coup of a legitimately elected president, producing publicly available date for independent verification of their lies of fraud in the election?
Because in the 54 lawsuits so far filed, not once has any of them produced any evidence to substantiate their lies. In fact, in not a single case has fraud been mentioned as the reason for the lawsuits.
P.S. You can't request all the data from the monthly Commerce Department reports unless you register with them and sign a form indicating you'll keep all of their data secret. This means those reports can't be trusted since the data is not publicly available and also means when they claim the unemployment rate is falling when there are millions of people out of work, they're lying.
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(source: https://www.bls.gov/cps/cps_ht... [bls.gov]). On that same page, BLS also states
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https://www.thebalance.com/wha... [thebalance.com]
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In general it's a good ideal. However, in the medicine the raw experimental data contains tons of personal data that's impossible anonymize effectively.
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That's true of environmental health impact studies too. If you want to study insert-pollutant-here causes cancer, you're doing to end up with a list of cancer patients and their estimated exposure somewhere in your research.
Re: Sounds like a good rule to me (Score:5, Insightful)
This is exactly the sort of study that the rule intends to exclude. The raw data, by necessity will include personal details and most people won't participate if they're not guaranteed anonymity. Which basically means most medical studies are off limits to use for the EPA. Which of course is the point of the rule - to cripple any ability to use most studies - hence removing the EPA's ability regulate just about anything.
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It isn't a difficult question to ask. But when there is a significant number of responses that are "no", it becomes much more difficult to get unbiased results. With medical studies, this might be quite common. Who in their right mind wants their medical history published??? Anonymization is, as discussed elsewhere, very hard to do and the more meta data that is included (and that is often essential to understanding the data), the easier it is to de-anonymize. Especially with all the data mining that goes o
Re: Sounds like a good rule to me (Score:1)
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"Do you consent to having your anonymized information used to study blah blah blah?" is not a difficult question to ask.
But it's not the question that will need to be asked. If investigators intend for their study to be used by the EPA, they will need to ask whether test subjects consent to having their PII revealed as part of the study's underlying data.
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That's the whole point: That type of study would be excluded. If the EPA is required to discard any anonymous medical data, which they would be under this rule, then it becomes almost impossible to prove a risk to public health.
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In general it's a good ideal. However, in the medicine the raw experimental data contains tons of personal data that's impossible anonymize effectively.
Nice excuse though, isn't it?
The problem with HIPPA is the same as with Computer security. They give it all away to hackers online. But It keeps us from finding out what room our cousin is in at the hospital, or berates us about the length of our password while handing our CC numbers over to the same people.
It would seem that instead of squelching an important avenue of research that a different approach might be found that isn't so convenient for people who would rather not have that research be don
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Screw you, Bill. I told you at Thanksgiving that you were a right bastard for simply showing up, and I didn't want to see you again. Now you come trolling around my hospital room asking about whether you're mentioned in my will. Well, you're not, and you're not going to be. Go back to your job clerking at the liquor store.
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Screw you, Bill. I told you at Thanksgiving that you were a right bastard for simply showing up, and I didn't want to see you again. Now you come trolling around my hospital room asking about whether you're mentioned in my will. Well, you're not, and you're not going to be. Go back to your job clerking at the liquor store.
I legit laughed at this. Well done.
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The problem with HIPPA is the same as with Computer security. They give it all away to hackers online.
I think you have a different definition of "give it all away" from most people. I infer from your reasoning that a locked house also has the same problem as HIPPA and computer security. Anyone that locks their house is just giving the contents of that house away to thieves in the real world.
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The problem with HIPPA is the same as with Computer security. They give it all away to hackers online.
I think you have a different definition of "give it all away" from most people. I infer from your reasoning that a locked house also has the same problem as HIPPA and computer security. Anyone that locks their house is just giving the contents of that house away to thieves in the real world.
Wow, not even! You've managed to infer the exact opposite. Businesses and Hospitals do CC and Private information, and often hide behind that, while having abysmal computer security. themselves.
Hospitals: https://healthitsecurity.com/n... [healthitsecurity.com]
Credit cards: https://www.usnews.com/news/bu... [usnews.com]
These are just two examples, there are many more.
But we are regularly harangued about our bad passwords.
That's the point. Why make a big deal out of individual's when the people who are supposed to be the pros are
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I think you are missing my point. None of those organizations are "giving out millions of people's data" anymore than someone getting burgled at home is giving away there possessions to the thief. I suppose you blame the lock manufacturers if your home is robbed and the thief used a lock pick to open the lock on your front door. I doubt that it is any easier for the average person to pick a lock than it is to breach the security of a hospital's network. I doubt it is any harder for a well informed thief to
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I would sooner believe a study which makes its data publicly available for independent verification over one in which we are just supposed to take the researcher's word for it. Rather absurd that it has taken this long for this rule to be put into place.
The great part is that we don't have to do this research any more, and instead can base health and welfare on politicians who have proven to be the people who really know science, and are 100 percent honest. Those damn scientists need bitchslapped back into submission anyhow, all the science we know is in the Old Testament, .infallible and always true.
Education is what paves the road to eternal damnation anyhow.
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Education is what paves the road to eternal damnation anyhow.
According to the book of Isaiah this is true even if you get your education from a Prophet! Or, especially then.
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So I take it that you are willing to give free access to your health and financial data? Sure you may not currently be involved in any research that will be submitted to the EPA but this policy may not be limited to just the EPA. I'm sure that if this policy is adapted by all government agencies that one of them will require public access to your personal data so that studies that affect policy may be submitted.
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If you read the agreement you sign with pretty much any corporate health care provider, you are already giving permission for that data to be used, though allegedly "anonymized."
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With the proper controls on who may access that data, which fields they are allowed to access, and how the data may be used, then why not? But the general public doesn't need it.
I wish the same controls applied in all cases of mass data collection. In some states, voter registration records are available to anyone upon request. Also car registration, property records and so on. Again, the general public doesn't need thi
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And yet, right there, from EPA's [epa.gov] own site, the "final rule strengthening transparency in pivotal science underlying significant regulatory actions and influential scientific information.pdf" says:
The EPA has established a docket for this action under Docket ID No. EPAHQ-OA-2018-0259. All documents in the docket are listed on the http://www.regulations.gov/ [regulations.gov] web site. Although listed in the index, some information is not publicly available . . .
[emphasis added] /. made me remove the underscores from the title of the .pdf
Also,
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I would sooner believe a study which makes its data publicly available for independent verification over one in which we are just supposed to take the researcher's word for it. Rather absurd that it has taken this long for this rule to be put into place.
Studies can be (and are) replicated without revealing the subjects private information. Scientists can access anonymized datasets. New data sets can be compiled by other scientists and then analyzed to validate the findings of the earlier studies.
The purpose of this rule is to give the political appointees heading up government agencies a reason to ignore science when making policy decisions.
Not a stick (Score:4, Insightful)
>"not a stick for forcing scientists to choose between respecting the privacy and rights of their study participants and submitting their work for consideration."
Of course not - it's a lever for getting all that annoying medical science and public health bullshit out of the way of protecting corporate exploitation of the environment. Tragedy of the commons? More like windfall of the corporations, am I right?
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>"not a stick for forcing scientists to choose between respecting the privacy and rights of their study participants and submitting their work for consideration."
Of course not - it's a lever for getting all that annoying medical science and public health bullshit out of the way of protecting corporate exploitation of the environment. Tragedy of the commons? More like windfall of the corporations, am I right?
Exactly. Because we'd still have BPA, wouldn't have the research that shows that autism is tied to glyphosate use, and a lot of other things that impede business. All things that require that the results are referenced to humans.
HIPPA is about as bitched up a rule as you can get.
Here's a solution: Assign patient numbers that can be referenced by a trusted professional Medical doctor. They can work with Researchers and testify under oath as needed that Patient 59B is a real patient who exists, the cond
Re:Not a stick (Score:4, Insightful)
Here's a solution: Assign patient numbers that can be referenced by a trusted professional Medical doctor. They can work with Researchers and testify under oath as needed that Patient 59B is a real patient who exists, the condition Patient 59B has is accurately depicted if there are questions.
It's not as simple as this. Depending on the size of the cohort, demographics, and locality, seemingly innocent demographics that might be pertinent to the research can be considered identifying PHI when taken together.
For example, if you were looking for elevated cancer rates in people living near a chemical plant in rural Maine, then the fact that one of the subjects is a 72 year old single black male with a history of diabetes might be pertinent to the research. However, if there are only like 5 black households in the area covered by the study, you couldn't publish that fact as it would be too easy to identify the individual using publicly available information.
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Here's a solution: Assign patient numbers that can be referenced by a trusted professional Medical doctor. They can work with Researchers and testify under oath as needed that Patient 59B is a real patient who exists, the condition Patient 59B has is accurately depicted if there are questions.
It's not as simple as this. Depending on the size of the cohort, demographics, and locality, seemingly innocent demographics that might be pertinent to the research can be considered identifying PHI when taken together.
Actually, it is simple. Problem is, someone's worried about the color of someone's pubes, as if that's a problem.
For example, if you were looking for elevated cancer rates in people living near a chemical plant in rural Maine, then the fact that one of the subjects is a 72 year old single black male with a history of diabetes might be pertinent to the research. However, if there are only like 5 black households in the area covered by the study, you couldn't publish that fact as it would be too easy to identify the individual using publicly available information.
Who exactly is going to take a 20 percent chance of identifying a specific person as being personally identifiable? Especially when all the information is given away by hospitals whne hacked anyhow. This all ends up being an exercise in weirdness, like the guy I kicked out of a meeting for not wearing a mask, claiming he had a health problem that he was not required to tell me about. Well, I sup
Re:Not a stick (Score:4, Informative)
Who exactly is going to take a 20 percent chance of identifying a specific person as being personally identifiable? Especially when all the information is given away by hospitals whne hacked anyhow.
Some random stranger on the internet probably won't care and won't find it useful, but some nosy neighbor might. Someone familiar with the community might know that 4 of those households don't have any elderly people in them and be able to narrow it down to 1 guy. Depending on what is disclosed, that could cause real problems for that person.
I never met a person with a health issue who wasn't more than happy to tell me all about it anyhow. Does HIPPA override a personal desire to have the world know?
And what if you are studying psych issues, or STDs? What if the collected data includes drug use history, addiction, or sexual orientation? You don't think being outed as gay, HIV+, or transgender has ever been a problem for someone? Never gotten anyone fired? Disowned by their family? Never gotten anyone killed?
You don't get to make the decision to disclose this stuff on behalf of people. If these types of disclosures become routine, you will find that volunteers for studies will dry up and less of this type of science gets done, or gets done much more slowly and at greater cost. I suspect this is precisely the intent of this new rule.
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If these types of disclosures become routine, you will find that volunteers for studies will dry up and less of this type of science gets done, or gets done much more slowly and at greater cost. I suspect this is precisely the intent of this new rule.
I think that kneecapping research has been done. It's stopped now, because they cannot disclose the data they use. I trust that you are very happy with this? One thing is for certain, a lot of stuff will be brought onto the market, and if it kills you, at least someone made some profit. The cool part is that you can't even be used as possibly being killed. This is a great day for manufacturing. Maybe we can bring back that awesome greeen wallpaper that has arsenic in it. Can't prove it isn't healthy becaus
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This kind of science got done in the days before HIPAA and it was still routine to anonymize personal information. These days I think you would be hard pressed to find an IRB that would approve spraying the subjects' personal information all over the internet, regulations and consent nonwithstanding.
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As others have alluded - it used to be possible to make a good-faith attempt to anonymize data. Now with World + Dog assembling massive cross-referenced databases of both publicly available information and internet surveillance, it has become trivial to de-anonymize pretty much any collection of personal data.
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As others have alluded - it used to be possible to make a good-faith attempt to anonymize data. Now with World + Dog assembling massive cross-referenced databases of both publicly available information and internet surveillance, it has become trivial to de-anonymize pretty much any collection of personal data.
I guess health research is pretty much over.
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Why? You don't have to make your raw data public to publish your results - in fact it's not super common to do so in any field - very often the closest you'll get is an imprecise graph of datapoints. Raw data is only useful for finding calculation flaws - proper peer review requires independent corroboration of your results using an independent sample.
You can even potentially share raw data with other researchers who have agreed to similarly stringent patient privacy protections.
What you *can't* ethically
Re: Not a stick (Score:1)
Fuck Wheeler... (Score:5, Informative)
His history (https://blog.ucsusa.org/elliott-negin/andrew-wheeler-decimated-epa) shows he has nothing but contempt for the environment.
How can anyone condemn their successors to hell-scape that America is becoming because of their decisions. What kind of monster has that little forethought or conscience?
Fuck Wheeler.
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Don't worry. When Biden takes office on January 20th, he'll have this stupidity undone.
If we're really luck, Biden will have the DOJ investigate the con artist for his corruption and violations of election laws and have him thrown in jail.
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American tradition, and same here in the UK: When the people in charge of government change, their first order to business is to purge government of all those loyal to the last government and their ideology and replace them with a whole new set of administrators, who then repeat the process going down the line. In this case it's a good thing, but Wheeler got into the position by the same process. And it makes long-term planning a nightmare. You can't depend on any policy to endure much past the next electio
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Biden might undo this, but it will take a while. Biden can't just do it by executive fiat. There are lots of hoops to go through to change this sort of thing (this is why the rule took 4 years before being finalized).
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And there's no shortage of Republicans ready to apply what was used to delay and block Trump against a Democratic president.
You were warned about this. I assume someone will write another bleat how they are shocked -- shocked! -- that their tactics are "being weaponized against us."
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Don't worry. When Biden takes office on January 20th, he'll have this stupidity undone.
If we're really luck, Biden will have the DOJ investigate the con artist for his corruption and violations of election laws and have him thrown in jail.
If his bold faced threats against the Secretary of State in GA are not prosecuted, we are no longer a country of laws. Did you listen to that recording? Chilling.
Re:Fuck Wheeler... (Score:5, Insightful)
Problem is the Democrats will have to expend time and political capital undoing all this shit. They have to go through the democratic processes, agree on a replacement, get any needed votes done.
It's all time and energy wasted that they could be using for more productive stuff, rather than just undoing the damage the last lot did.
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Don't worry. When Biden takes office on January 20th, he'll have this stupidity undone.
Not necessarily. It is not easy to change official policy/rules once they are codified. There is a process involved in changing the rules. See the difficulties the Trump administration had in revoking the "dreamers" rules.
Said X, Means Y (Score:5, Insightful)
Said this:
"I don't mean to be rude, but..."
Means:
I'm going to be rude, but....
Said this: ...the rule is "not a stick for forcing scientists to choose between respecting the privacy and rights of their study participants and submitting their work for consideration."
Means:
The rule IS a stick for forcing scientists to choose between respecting the privacy and rights of their study participants and submitting their work for consideration.
Re:Said X, Means Y (Score:4, Insightful)
Re:Said X, Means Y (Score:5, Insightful)
The fact that the EPA declined to comment about this policy change and instead referred Axios to said Op-Ed is an even bigger red flag. 8^)
Thomas Sinks...funny man. (Score:2)
This was at the end of the article and it's just really funny.
Thomas Sinks said, "based on a conspiracy theory, which is that EPA practices secret science" despite no evidence to support this.
How could there be any evidence of secret science? It's secret! He's such a jokester...
Privacy issues? (Score:1)
If there are privacy issues just ask for either a release or make an attempt at anonymizing the data.
If there are so few people or institutions that they can be re-identified, that means you're using too few subjects.
Toxic Air, Water, Land, Products... Are Good? (Score:2)
Pick One: (A) USA Progress Polity, (B) U$A Profit Polity.
Does Plutocrat Polity Prevent Progress?
Does Isocracy Polity Prevent Profit?
Thanks for the Info.
Just relax... (Score:2)
Prioritizing data and methods? (Score:1)
This is very bad (Score:1)
Researchers sign legal documents that say they will not publish any personal information used in the research. That personal information is very important for many kinds of research that will eventually help people. Without that how will they even do important research. Must they ask permission for each and every person to use their personal information? That's just more red tape and in this case it WILL hurt people because some research will be impossible. On the positive side US will now have to pay other
fifteen day rule (Score:2)
Good this this rule will only last a few weeks.