US lawmakers have argued back and forth for years on what a federal data privacy law should look like. Before they were able to pass any regulations, however, the COVID-19 pandemic stormed in and highlighted why data privacy is a necessity in public health.
Technology regulators testified to Congress on Wednesday at a Senate Commerce Committee hearing on the need for a federal data privacy law. It was the first hearing focused on data privacy regulations since the coronavirus outbreak changed everything, from how students attend school to how court hearings happen.
You might not think of data privacy as a priority when you're talking about an infectious disease that's killed nearly 1 million people worldwide, but it plays a big role in how governments can effectively respond to the public health crisis.
Contact tracing -- the act of getting information from patients about who they've been in touch with to slow the spread of a disease -- is a proven method for dealing with outbreaks. But without data privacy laws to ensure that this information is protected from abuse, and given Silicon Valley's track record of privacy violations, trust has remained low for contact tracers.
Several incidents of health data abuse have also eroded trust for contact tracers. Members of a church in South Korea have been subjected to online abuse after data about COVID-19 patients leaked online, while a fast food chain employee in New Zealand used a customer's contact tracing information to hit on her. Public Health Wales announced on Sept. 15 that it on 18,105 coronavirus patients after a staffer clicked the wrong button.
"The need to collect a great deal of data for contact tracing and to track the spread of the disease raises privacy concerns if done improperly," Sen. Roger Wicker, chairman of the Senate Commerce Committee, said at the hearing on Wednesday. "The need for a uniform, national privacy law is greater than ever."
While your health data is supposed to be private under the national Health Insurance Portability and Accountability Act (HIPAA), it only applies to covered entities like health care providers and insurance agencies.
That means companies like Google, Apple and Microsoft, which are investing in public health efforts to help with the coronavirus outbreak, are not held to the same privacy standards that your doctors are.
The companies have promised not to use this data for, but without a law requiring it, getting the public to trust them is a different challenge.
"If we don't pass a federal privacy law to deal with these issues, we will have a great deal of difficulty in the US in terms of dealing with pandemics like the COVID crisis, in terms of providing people with the trust that they need to allow companies, governments and other organizations to respectfully and responsibly use date to address these crises," Julie Brill, Microsoft's chief privacy officer and a former FTC commissioner, said at the hearing.
Not all contact tracing apps have the same level of privacy protections, either. While Apple and Google's exposure notification tools don't rely on location data and reset randomized IDs every 24 hours, others like Citizen's app give an exact location of where the exposure to COVID-19 happened.
In June, senators proposed a COVID-19 data privacy bill that would ensure that the data collected by companies could not be used for commercial purposes, and could be deleted upon request.
Like the many other federal data privacy bills that have surfaced in Congress, the COVID-19 data privacy bill didn't get very far. It never made it to the Senate floor.
"Protecting Americans privacy rights is critical, and that has become even sharper in the focus of the COVID-19 crisis where so much of our lives have moved online," Sen. Maria Cantwell, a ranking member of the committee and a co-sponsor of the bill, said. "The American people deserve strong privacy protections for their personal data and Congress must work to act in establishing these protections."
The information contained in this article is for educational and informational purposes only and is not intended as health or medical advice. Always consult a physician or other qualified health provider regarding any questions you may have about a medical condition or health objectives.