I’m sure we’re all in favor of medical research. Although we’ve made tremendous progress in the last century toward solutions to the many diseases that ravage the human body, there is much work yet to be done.
But how much of your privacy are you willing to give up to further the progress of medical research? That’s the heart of the question at stake in new government legislation that Congress passed unanimously last December.
The 21st Century Cures Act
Twila Brase, R. N., writing in The Wall Street Journal, is president of the Citizens’ Council for Health Freedom. She calls attention to the little known threat that medical research poses to our privacy. The 21st Century Cures Act has been hailed as the biggest healthcare reform since ObamaCare for its generous increases to the budget of the National Institutes of Health. It designates nearly $2 Billion for cancer research, and sets aside $500 million in 2017 alone to address the opioid crisis.
This good news is tempered by the fact that the same legislation weakens patients’ privacy rights. This decline in protections for our privacy began in 1996 with the Health Insurance Portability and Accountability Act (HIPAA). As every doctor knows, this legislation placed restrictions on the handling of medical records in private offices and hospitals to protect privacy. But it also allowed government-funded researchers to collect and even share patients’ medical and genetic information without their consent.
But the 21st Century Cures Act takes it one step further. Brase says, “The law tries to create an “information commons”; a government-regulated pool of data accessible to all health researchers, regardless of background, training or motive.”
Are patients willing to sacrifice their privacy to speed research?
A 2007 survey by the Institute of Medicine found that only 1% of Americans were willing to have their health information shared for research without their consent. Yet the new law doesn’t give patients in government-funded research any way to opt out of sharing their medical data. In fact, it prohibits “information blocking” by healthcare providers, creating a mandate for them to share data with the researchers.
How have the courts ruled on this issue?
Federal courts have upheld forced data sharing because patients “voluntarily” give personal health information to their doctors. But some jurists and legal scholars disagree, arguing that today’s laws don’t provide constitutional privacy protections.
Even liberal Supreme Court Justice Sonia Sotomayor wrote in the recent 2012 ruling of U. S. v. Jones, “It may be necessary to reconsider the premise that an individual has no reasonable expectation of privacy in information voluntarily disclosed to third parties.” She warned that the current privacy laws are “ill suited to the digital age.”
How readily available is private medical information?
Some would argue that the data can’t be traced back to individual names. It is stripped of the usual identification data including names, street addresses and Social Security numbers. But researchers have shown great ingenuity despite these protections. Harvard researchers examined about 600 anonymous profiles from a genome-research project using only birth date, sex and ZIP code. They were able to identify nearly half of these people by name.
In 2013, a group of researchers led by MIT’s Yaniv Erlich took anonymous genetic information and cross-referenced it against a public database genealogists use to match small differences in Y chromosomes with certain family trees. They were able to identify dozens of completely “anonymous” people.
New legislation recently introduced in March, 2017, by Rep. Virginia Foxx (R – NC) is called The Preserving Employee Wellness Programs Act. It would give companies leverage to push genetic tests on their workers. Those who opt out could have their insurance premiums raised by up to 50%. It is obvious this could lead to discrimination in hiring since companies would have the incentive to avoid hiring people with high-risk profiles.
What is an acceptable price to pay for advances in cancer research, heart disease, and other chronic debilitating diseases? The Fourth Amendment of the Constitution never envisioned these kinds of tradeoffs when it prohibited “unreasonable searches and seizures.” But the Internet age has forced us to consider the reality of a world where privacy is fast disappearing.