Three events portend serious danger to medical privacy, but it may be hard for patients to connect the dots because they seem unrelated, involve different sectors of the economy and occurred several years apart.
The first threat arose from the 2008 financial crisis. Buried in the major legislation that passed quickly in February 2009 – the “Troubled Assets Relief Program” (TARP), aka “stimulus” bill – were two provisions unrelated to the regulation of financial markets. Apparently, no one asked why, but then few read the bill before voting to pass it.
First, to maintain their existing level of Medicare and Medicaid payments, all U.S. physicians were required, by 2014, to use electronic medical records and to send electronically generated medical records directly to the federal health coordinator, or “health czar,” without patients’ direct permission. Most patients don’t know that their information can be shared with the federal government without the need for further consent.
Until the TARP legislation was passed, patients were the owners of their medical records, which could not be shared without their knowledge and permission. Physicians who generated the medical records were the custodians and entitled to keep their originals, but were required to provide copies to patients if formally requested.
This new mandate to share all electronic medical records with the federal government’s health coordinator violates two provisions of the U.S. Constitution: 1) the Fourth Amendment’s protection against unreasonable searches and seizures, and 2) the Fifth Amendment’s Takings Clause. Your property – your medical information – is taken by the government without just compensation.
Second, TARP set up the National Coordinator for Health Information Technology, to create a national database of electronic medical records for each person in the United States by 2014. The medical information compiled in the database would then be used by the Independent Payment Advisory Board (IPAB) to decide which treatments would be allowed based on such factors as age, weight, health condition, life expectancy and “quality adjusted life years” (QALYs). In effect, this set up the medical care rationing mechanism similar to those operating in the British and Canadian single-payer, socialized medical systems. Your own medical data are then used against you to deny treatment you may need but the government decides is “unnecessary” or too costly.
Two additional threats to your medical privacy have come in 2018.
One was the data breach when more than 87 million Facebook users had their personal information “mined” and used without their knowledge by third-party businesses. In a massive abuse of privacy and trust, Facebook user data were shared via apps and questionnaires people used, unaware that their answers were being compiled and sold to outside businesses. Facebook CEO Mark Zuckerberg was called to testify before Congress about the company’s actions and data privacy in general.
But other than an apology, nothing has yet been done to compensate Facebook users for the violation of their privacy and sharing of their personal data. What has not yet been discussed is whether data from the various health and medical apps linked to Facebook, Google, Twitter, Amazon and other “big data” companies have also been shared with third parties without users’ consent or knowledge.
The second was the announcement of a federal government 10-year project called All of Us, to compile your personal medical and lifestyle information. It isn’t just focused on medical treatment you may receive, as specified in TARP. This project seeks ALL of your personal health and lifestyle information: medical records, psychiatric records, drug abuse/addiction treatment, lifestyle, personal habits, your physical measurements such as blood pressure, weight, lab results, all health care visits, medications you are taking and even your DNA.
The launch of this massive data compilation effort has already begun, with such diverse partners as the University of Arizona, the University of Pittsburgh, Biobank, San Ysidro Health, TransAmerica Precision Medicine Consortium,and a host of federal agencies. More are scheduled to join the effort.
The project is ostensibly focused on “research.” But just what “research”? Who defines the research? What will it be used for? Are there limits to it? Many physicians and other experts have expressed serious concerns about both the privacy of health information once turned over to researchers and just exactly what type of research will be done using people’s data. For example, would such massive data compilation of DNA be used to identify and perhaps abort those at risk for criminal behavior, or those of an unwanted race or sex, or those carrying genes for high-cost illness or dementia? Are you going to be required to undergo “gene-editing” to reduce medical costs to the government?
Ronald Reagan prophetically warned in 1961: “One of the traditional methods of imposing statism or socialism upon a people has been by way of medicine. It is very easy to disguise a medical program as a humanitarian project.” As the world saw with Nazi Germany’s horrific medical “experiments” on Jews and others deemed “undesirables,” it may sound “beneficial” to undertake “research” for the “common good,” but such laudable goals can easily be perverted to objectionable or even diabolical uses.
Patients must be proactive in protecting medical privacy, realizing that much privacy has already been lost when seeking “insurance” payment for medical care, whether private or government insurance like Medicare and Medicaid.
Patients also need to keep in mind they are surrendering their privacy whenever they “share” data with Facebook and other private businesses under the guise of innocuous “research” or “surveys.” It’s the price paid for “free” electronic conveniences.
Preserving medical confidentiality requires constant vigilance today. Physicians must speak out against being used as agents of the State against the best interests of individual patients.