Viewpoint: How to balance data sharing for public good while preserving patient privacy

Technology companies and federal organizations are increasingly collecting users' personal data, spurring calls for more regulation to protect individual privacy. 

The nation's approach to this regulation must balance privacy concerns alongside the social benefits of greater access to this data, David Deming, PhD, an economist, professor and director of the Malcolm Wiener Center of Social Policy at the Harvard Kennedy School in Cambridge, Mass., wrote in a Feb. 19 editorial published in The New York Times.


He outlined three examples of how data sharing can be used for public good, while protecting personal data:

  1. Public access to sensitive health records expedited the development of COVID-19 vaccines produced by Moderna and Pfizer.

  2. The U.S. government led the Human Genome Project, which began in 1990 and sought to map the entire sequence of human DNA by 2005. Labs that participated in this project shared their data on a public site within 24 hours of sequencing the gene and opened a new era in scientific progress for genetics. Previously, labs patented specific genes for research and hid their discoveries, Dr. Deming said.

  3. The U.S. Department of Treasury was not able to allocate Paycheck Projection Program loans based on U.S. companies' financial health due to a lack of data, according to Dr. Deming. This economic data already exists but is kept private by companies. Anonymizing the data and making it public could give policymakers real-time data to target policies to communities that need the most assistance, Dr. Deming argued.

He said the U.S. should create a federal data library to clean up and assemble data for public viewing. 

"Data's increasing value as an economic resource requires a new way of thinking," Dr. Deming concluded. "Strict privacy protections are needed to make socially valuable data available for the public good."

More articles on cybersecurity: 
Kroger warns of data breach for some pharmacy customers
IT vendor pays ransom to recover nearly 30,000 patients' data stolen from California clinic, surgery center

New Mexico hospital's computer network hacked

 

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