Utah Could Lead the Fight Against a National Autism Registry  A recent editorial in the Deseret News calls on Utah to stand against the new Health and Human Services (HHS) plan to create a national autism registry, a pilot program for a larger health-care “Real-World Data Platform.” Eventually, other chronic diseases would be added. To make it happen, the National Institutes of Health and the Centers for Medicare and Medicaid Services have announced a new data sharing agreement, amassing private medical records from numerous federal and commercial databases. The goal is to create a comprehensive picture of patient data representing a broad swath of the U.S. population, including:
The NIH will then fund as many as 20 outside groups to access the database and produce autism study results. NIH is promising “state of the art” confidentiality protections and says that researchers won’t be able to download the private medical data they access. But promised steps such as removing personal identifiers are not enough, writer Heather Judd asserts, noting the NIH’s own studies show that de-identified data can be re-identified if multiple sources are combined: “This is not how public health is protected,” Judd writes. “It is how personal rights are violated.” What’s at stake, she says, is whether federal health agencies have authority over deeply personal medical information, superseding states and individual citizens. In other words, who owns the data? What happens to consent? What happens to due process? To make matters worse, the HHS is premising its autism search on pseudoscience that appears to disregard decades of scientific research (that the federal government itself helped to fund). This includes falsely referring to the condition as an “epidemic” and labeling it as a “preventable” disease (genetically inherited diseases aren’t preventable). And thus, with absolutely no scientific basis, HHS has declared a nebulous medical emergency to justify scooping up the data of millions of Americans and registering them in a national database. In response to the HHS initiative, last week Illinois Gov. JB Pritzker signed an executive order designed to shield his citizens’ medical information from federal claws. Utah is just the state to take on this federal privacy overreach with the passage of a new law. In recent years, the Beehive State has:
Utah has an opportunity to once again be a national privacy leader, this time against the federal government’s all-out, long-term assault on Americans’ medical privacy. Comments are closed.
|
Categories
All
|
RSS Feed