A proposed rule change by President Trump, which demonstrates the administration’s disregard for science, could significantly reduce researchers’ ability to protect kids, such as those in Flint, from lead poisoning.
The weakening of existing Environmental Protection Agency (EPA) regulations would undermine medical specialists by limiting what data they can use when pinpointing numerous forms of lead contamination that can lead to neurological defects, brain degradation or cancer.
This reversal targets the “secret science” rule, requiring scientists to disclose all of their raw data, including confidential medical records, in order for their findings to be considered valid in shaping regulations. But in the research community careful use of medical records on an anonymous basis without invading privacy is key to tracking lead contamination.
That’s according to one of the nation’s premier public health researchers in this field, Gabriel Filippelli.
Filippelli warns that the proposal would drastically limit what kinds of scientific and medical research the EPA can draw on as it makes policy. Press reports indicate dissension within the administration, as an EPA advisory panel with many members appointed by President Trump has criticized the rule, saying it will do little to increase transparency and may limit what kinds of research get done.
Filippelli explains:
As director of a center on urban health, I study issues including human exposure to toxic substances such as lead and mercury. Confidential patient information is a key resource for my work. If the secret science rule is enacted, I believe that children’s health will suffer as a direct result.
…My work is made possible because researchers can obtain confidential patient records, under strict regulations and oversight to ensure their confidentiality throughout analysis. These controls are mandated under federal regulations that were rightly instituted to protect people’s identities and health data pursuant to the 1996 Health Insurance Portability and Accountability Act (HIPAA.)
The nation has witnessed countless attempts to use the Flint water crisis as a catalyst to crack down on hazardous lead exposure in every state, but especially in the industrial Midwest. Five years later, Flint kids struggle with educational failures due to behavioral problems, dyslexia, reduced IQ and deficits in attention, learning and memory.
Studies indicates that high lead levels can damage kids permanently through water, dust, imported spices, glazed pottery and air, via nearby construction projects. At the same time, the Trump administration is bothered by research that works within the HIPPA law but also allows anonymous reporting of individual health problems, mostly in children.
Filippelli began researching lead exposure hot spots in U.S. cities nearly 15 years ago, well before thousands of kids were contaminated by water in Flint. In an essay written from his home base, Indiana University-Purdue University-Indiana (IUPUI), Filippelli offered the example of Indianapolis as a site where his detailed research would have been impossible without the “secret science” rule.
The professor could not analyze millions of soil, dust and water samples in Indianapolis but instead he turned to medical records of kids who undergo routine blood tests. Relying upon 16,000 medical records that included each child’s age, test date and address, Fileppilli was able to create a block-by-block map of the city that revealed danger areas for lead poisoning.
