Health insurance is insurance against the risk of incurring medical expenses among individuals. By estimating the overall risk of health care and health system expenses, among a targeted group, an insurer can develop a routine finance structure, such as a monthly premium or payroll tax, to ensure that money is available to pay for the health care benefits specified in the insurance agreement.
Re “Uncle Sam Wants You — or at Least Your Genetic and Lifestyle Information” (news article, July 24), about the government effort to get such data from a million volunteers for a research project on disease treatment and prevention, part of President Obama’s Precision Medicine Initiative:
As a researcher peripherally involved in the initiative, I want to provide some assurance to prospective participants about how the data collected from volunteers will be managed.
A working group approved by the National Institutes of Health gathered information from academic researchers and industry experts to develop a comprehensive program for analyzing health data from a large number of volunteers.
The group issued its “Data Security Policy Principles and Framework” for organizations participating in precision medicine activities. This framework provides recommendations to health care providers that include limiting access to volunteer data, supporting third-party review of security policies, and the encryption of patient data to provide confidentiality for the volunteers.
The future of delivering personalized health care depends on well-designed data-governance policies like these that enable predictive behavior without compromising privacy.
The writer is a research fellow at the Institute of Simulation and Training, University of Central Florida.