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EPA Proposes Limits To Science Used In Rulemaking (reuters.com)
An anonymous reader quotes a report from Reuters: The U.S. Environmental Protection Agency proposed a rule on Tuesday that would limit the kinds of scientific research it can use in crafting regulations, an apparent concession to big business that has long requested such restrictions. Under the new proposals, the EPA will no longer be able to rely on scientific research that is underpinned by confidential medical and industry data. The measure was billed by EPA Administrator Scott Pruitt as a way to boost transparency for the benefit of the industries his agency regulates. But scientists and former EPA officials worry it will hamstring the agency's ability to protect public health by putting key data off limits.
The EPA has for decades relied on scientific research that is rooted in confidential medical and industry data as a basis for its air, water and chemicals rules. While it publishes enormous amounts of research and data to the public, the confidential material is held back. Business interests have argued the practice is tantamount to writing laws behind closed doors and unfairly prevents them from vetting the research underpinning the EPA's often costly regulatory requirements. They argue that if the data cannot be published, the rules should not be adopted. But ex-EPA officials say the practice is vital.
The EPA has for decades relied on scientific research that is rooted in confidential medical and industry data as a basis for its air, water and chemicals rules. While it publishes enormous amounts of research and data to the public, the confidential material is held back. Business interests have argued the practice is tantamount to writing laws behind closed doors and unfairly prevents them from vetting the research underpinning the EPA's often costly regulatory requirements. They argue that if the data cannot be published, the rules should not be adopted. But ex-EPA officials say the practice is vital.
Medical research.
The participants in a medical study generally are protected from having their medical histories exposed to the world.
I suppose one could argue that knowing someone is 37, a non-smoker, takes over-the-counter asprin, and has high-blood pressure might not be enough to expose who they are. But in more detailed tests knowing someone had cancer in a timeframe or making their DNA public definitely could be invasive.
Excerpt from a letter signed by 1000 scientists urging Pruitt not to do this:
Proponents for these radical restrictions purport to raise two sets of concerns: reproducibility and
transparency. In reality, these are phony issues that weaponize ‘transparency’ to facilitate political
interference in science-based decisionmaking, rather than genuinely address either. The result will be
policies and practices that will ignore significant risks to the health of every American.
First, many public health studies cannot be replicated, as doing so would require intentionally and
unethically exposing people and the environment to harmful contaminants or recreating one-time events
(such as the Deepwater Horizon oil spill).
Second, there are multiple valid reasons why requiring the release of all data does not improve scientific
integrity and could actually compromise research, including intellectual property, proprietary, and
privacy concerns. Further, EPA has historically been transparent in demonstrating the scientific basis of
its decisions, so the public can hold the agency accountable to establish evidence-based safeguards; any
changes should be made with the full consultation with and support of the scientific community.
"Solid research" means meeting the normal standards for research in that field.
I've actually worked with public health data, and the standard for exchanging data is to aggregate that data in such a way that personally identifiable information is not recoverable. For example when you report an HIV case, you know the person lives at 123 Maple Street, but you instead report it as occurring within a geographic area that contains enough people that it's not feasible to work out who that person is, even if you combine it with other data.
That's the usual standard. If you ask for surveillance data, you get sanitized data, never raw data. It may limit the kinds of conclusions you draw, but it doesn't undermine the validity of the conclusion you *do* draw.
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Not everything is about your politics.
If a construction crew drops a girder, what happens if it hits a Trump voter? Is this any different from what happens if it hits a Clinton voter instead?
I expect snark in response, of course, since you're more interested in looking clever than you are in finding truth.
Il n'y a pas de Planet B.
They're compensated.
Bull-hockey. Having one's entire life laid bare is hardly compensation for a free home page.
Il n'y a pas de Planet B.
Secret laws, secret courts, tyranny.
Secret data, secret science, charlatanism.
I worked with such sanitized data. Geography is reduced to a state and time reduced to a year. That was definitely not enough to do science.
I do not believe in karma. "Funny"=-6. Do good and forbid evil. Yours, Oft-Offtopic Flamebaiting Troll.
The HIPAA Privacy Rule establishes the conditions under which protected health information may be used or disclosed by covered entities for research purposes. Research is defined in the Privacy Rule as, “a systematic investigation, including research development, testing, and evaluation, designed to develop or contribute to generalizable knowledge.” See 45 CFR 164.501. A covered entity may always use or disclose for research purposes health information which has been de-identified (in accordance with 45 CFR 164.502(d), and 164.514(a)-(c) of the Rule)
Source: Health Information Privacy
Ignorance of the HIPPA regulations is fueling much of the backlash this proposed federal regulation change is attracting.
Once the data is "de-identified" it can be published, and removing identifying elements is trivial.
Ken