U.S. Sen. Michael Bennet has cosponsored legislation to implement new data privacy and security rights for individuals’ health information.
“Effective public health surveillance ultimately requires the cooperation and trust of individuals and communities whose data must be collected. If people fear the government will misuse their data, they may avoid testing and withhold critical information, jeopardizing our response to the pandemic and endangering the health of our communities,” said Bennet.
The Public Health Emergency Privacy Act would clarify that data collected for public health reasons be limited in its use, and that use of such data for discriminatory or commercial purposes is prohibited. The bill would require reports about the effect of digital data collection tools on civil rights and would require consent for collection.
Medical protocols during the pandemic, which include contact tracing, symptom tracking apps, and health screening websites do not necessarily square with existing patient privacy law. A recent Pew Research Center survey found that more Americans felt that the risks of collecting data by the government and private companies outweighed the benefits. Nearly two-thirds of respondents also said that they knew "very little or nothing at all" about existing data privacy regulations.