In China, "sudden events" like disease outbreaks or chemical spills are state secrets. That's not good for China's health or the health of the world. I'm glad that's not US policy. Not yet, at any rate. But a new bill introduced by Republican Senator Chuck Hagel is a step in that direction.
S. 3898 was introduced on September 14 to little notice. It is a Bill to amend the Homeland Security Act "to provide for the health of Americans by implementing a system that detects and identifies in a timely manner diseases, conditions, and events that represent a threat to humans, animals, food production and the water supply." (text of bill here). This sounds unobjectionable on the surface.
But the first thing to notice is this is not a public health law. It is a Homeland Security law. It sounds like public health but it isn't. The best that can be said about it is that it is a version of public safety legislation, like police and fire. That's the best that can be said about it. And I don't think even that is valid. Like China's legislation, it is narrowly defined as threats that affect the health of the American people. Infectious diseases don't know where the border is. The clear intent here is homeland security, not public health.
What's the alleged purpose?
It is the purpose of this Act to provide for the health of Americans by implementing a system that detects and identifies in a timely manner diseases, conditions, and events that represent a threat to humans, animals, food production and the water supply.
This is a pretty broad net: diseases, conditions and events that are a threat to humans, animals, food and water. And who is the overall arbiter of what is a threat to people, animals, air, water or food? Is it the Secretary of Health and Human Services or Secretary of Agriculture or Administrator of the EPA and all the agencies under them? No, it's the Secretary of one of the most incompetent and dysfunctional cabinet departments in government, the Secretary of Homeland Security. And how is Homeland Security going to do this? By establishing a secure electronic data repository, "controlled by the Department." This will be a databank of National Reportable Conditions:
The terms `national reportable conditions', `condition', and `conditions' mean the diseases, conditions, and events that when identified by health practitioners, veterinarians, animal and food production specialists, State and local health professionals, environmental and public utility workers, and laboratorians must be reported to the Department of Homeland Security as required under this section.
(6) NATIONAL REPORTABLE CONDITIONS SYSTEM.--
The terms `National Reportable Conditions System' and `System' mean the electronic system providing for the standardized collection, analysis, and transmission of national reportable conditions among the appropriate public health organizations, as required by the Secretary under this section.
(7) REPORT.--The term `report' means a set of data elements related to the identification of a detected condition. The content of such data elements shall be defined by the Secretary upon the advice of the Commission [to be set up by DHS]. Such data elements may include demographic data of the individual or entity reporting the condition, condition identification, the contact information of the reporting individual, and method of detection (such as laboratory test, subjective findings, or clinical observation).
There is more. The information in the system will be restricted to those people DHS says "need to know":
Not later than 1 year after the date of the enactment of this section, the Secretary shall establish a data repository of records processed by the System for use by Federal, State, and local public health personnel, law enforcement agencies, and other Federal agencies. The Secretary shall provide a mechanism for State and local entities to obtain access to the repository for designated individuals who have been identified as needing such access.
In other words, DHS will decide who gets to see this information. Not CDC. A police agency, DHS. This raises the specter that some observations made about a disease outbreak or a spill might be classified by DHS as a national security issue, our version of China's "state secret." This is a national federal reporting system that will contain information about all sorts of things, including diseased individuals, that may have identifiable information. It will be run by DHS, a police agency with no intrinsic public health mission, perspective or expertise. It takes the place of the National Notifiable Disease Surveillance System (NNDSS) run by CDC, as well as other systems run by other agencies like USDA, EPA and FDA. I'm sure they are thrilled. Unfortunately, with their compliant leaderships (I am thinking especially of CDC, here), they probably won't stand up to DHS here any more than they do elsewhere.
On top of all this, the task that has been set by S 3898 is incredibly difficult, a reflection of the complete lack of expertise and experience in the framers of this bill (it came from Hagel but clearly with DHS collaboration). Melding these data sources into one system sounds good (let's leave aside the threat to civil liberties of having personal health information in a national federal police agency run by incompetents and people who just canceled out habeas corpus), but it is not even possible with current knowledge and techniques. They will wind up with a poorly designed system which cannot be used as envisioned (because nobody knows how to do this yet; you may not believe this, but I know this from people who are up to their eyebrows in a similar task for the much smaller NNDSS system). It will make all the component parts worse and locate things in the wrong Department for the wrong reasons using the wrong people in the wrong way.
The public health establishment, at least, is likely to oppose it strongly. This idea is so incredibly bad I wouldn't expect it to go anywhere. But incredibly bad ideas are the stock in trade of this administration, so while I can't imagine this could ever becoming law, I didn't think as a nation we would ever sanction torture or cancel habeas corpus, either.
What do I know?
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Oh no.
The DOD is currently doing this to cover up their negligence. They call it "National Security".
Their claim is that they do not want our public, our allies, or our enemies to know our vulnerabilities (Christoper Shays stated this to a friend of mine who died from viscerotropic leishmaniasis last year).
It is bad enough that the DOD is getting away with lying to the public.
There is far too much room for abuse in this bill.
Just how much more power do these self serving politicians and entities need?
It doesnt have enough votes to even come close folks. It wont pass. Hagel is a two edged sword for the Republican party and with all of the stink about Habeas and torture, it likely wont ever leave the committee.
Randy: It's the kind of thing that sounds good and seems uncontroversial. Things like that sneak by sometimes. So we are calling attention to it.
I was not familiar with the bill. However, from the description here it appears compatible with the fact that DHS is the home of the National Biosurveillance Integration System (NBIS). NBIS is intended for early detection of disease outbreaks by comparing human and animal health data, among others. The human outbreak information is supplied to NBIS by CDC and its BioSense system. CDC/BioSense also integrates the VA and DoD TRICARE human health data before relaying it to NBIS. The bill identifies "conditions" and diseases, indicating it may be covering prediagnostic "syndromal" information, such as that it receives from the BioSense system. This bill could be for a DHS database to store reports from CDC (for humans) and other agencies (for animal and water data) as part of the NBIS system. CDC particpates in NBIS, not only supplying de-identified and aggregated data (not protected health information), but also particpating in the monitoring group to interpret the data.
David: If you read the Bill, it looks like it is meant to replace all the other systems, including NNDSS and Biosense by integrating it into one large system. Since NNDSS is still trying to figure out how to "integrate" its data, this is a foolhardy attempt. It will mean that an understaffed effort will have even more data to look at.
Hi, Revere
If the bill reads that way, it is probably sadly misplaced. My understanding is that CDC has had almost 100 separate surveillance reporting systems for different ailments that have been staving off consolidation for quite some time. In regard particularly to National Notifiable Disease Surveillance System, just its title implies diagnostic data, as opposed to indications. If the point of the bill is "timely identification of threats," as it mentions, it should probably focus on prediagnostic data.