Two senators introduce bill to give patients more control of data

Recently introduced legislation in the U.S. Senate would give patients more control over their own health data by shielding it from third party companies.

The rising use of home genetic testing kits and health data tracking apps has given companies access to consumer health data, and present laws do not adequately address privacy concerns as consumers adopt health apps and wearable devices, says the two senators who have introduced legislation to seek protection for patient data.

New technologies have made it easier for people to monitor their health, but they also give companies access to the data with limited oversight, says Sen. Amy Klobuchar, (D-Minn.), who introduced the Protecting Personal Health Data Act with Sen. Lisa Murkowski, (R-Alaska).

“This legislation will protect consumers’ personal health data by requiring that regulations be issued by the federal agencies that have the expertise to keep up with advances in technology,” Klobuchar adds.

Murkowski says constituents have voiced concerns about the protection of personal privacy. “This legislation takes important steps to ensure guidelines are created for security and privacy protections of modern health information. Our policies must evolve to keep up with advancements in recent technology.”

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Lisa Murkowski Photographer: Andrew Harrer/Bloomberg

Provisions of the bill include appropriate standards for consent that account for differences in sensitivity between genetic data, biometric data and general personal health data; enabling consumers to handle their own health privacy options, which include accessing, amending or deleting a copy of the personal health data that companies use.

The bill also would create a task force to address cybersecurity risks and privacy concerns associated with consumer products that handle health data, and security standards for consumer devices, services, applications and software.

Also See: Oregon may give individuals control over health data

The task force also would address the long-term effectiveness of de-identification methods for genetic and biometric data, and ensure sufficient resources to educate patients about direct-to-consumer genetic testing.

Consumer Reports supports the proposed legislation, says Dena Mendelsohn, senior policy counsel. “Protecting the legal right to privacy for users of a new health technology is about ensuring consumers have the freedom to take advantage of new technology without losing the right to privacy or facing harm such as discrimination.”

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